As we recover from a variety of illnesses, or while during treatment, we can often find ourselves spending an inordinate amount of time on bed rest. Here are some fun things to choose from to pass the time while on bed rest or resting at home.

Choosing joy in the midst of life’s challenges and among life’s darkest hours isn’t just naive optimism. Joy is, in itself, an act of ongoing resistance – resistance to the near-overwhelmingness that threatens to lead us wandering in our journey through life, down the darkest paths.

I could choose anguish and walk through life with leaden footsteps, seeing only gray clouds, dusty roads, and empty faces, focusing on the sadness that threatens to consume all of us, if we let it.

I could choose despair and find myself without hope or any expectation of improvement. I could let hopelessness guide my days, and let loneliness overwhelm me, even in a crowded room.

Choosing joy is direct defiance against despair and hopelessness. Once you have chosen joy, you will see it everywhere – in a butterfly fluttering by, in the calm sunshine of the early morning, in a tiny, defiant flower thriving amidst a pavement crack – you will find joy even amidst the gravel and dust of everyday life.

I, for one, choose intellect over ignorance. I choose hope over desperation. I choose composure over chaos. I choose to smile rather than to grimace in pain.

There is nothing false in these choices. They are not a denial of my life’s reality. They are simply an adjustment to my reaction when faced with life’s trials.

Tragedies, struggles, hardships and challenges affect us all. We do not choose them, and we cannot avoid them. We can only choose how we react to them, and how we respond.

My response to life’s calamities is steady and enduring. Quite simply, I choose joy.

If you have a chronic illness, such as Psoriatic Arthritis, Rheumatoid Arthritis, Lupus, Inflammatory Bowel Disease, etc., you may have heard the term “flare” mentioned. But what is a flare?

A flare is when your chronic illness symptoms are significantly higher than is typical “for you” on a daily basis. I’ll use my psoriatic arthritis (PsA) as an example. My biologic keeps my PsA well controlled, although I still have some pain, stiffness, and swelling, I am able to function in day-to-day life. (Maybe not well, but I can basically function.)

When I have a flare (which isn’t often) my fingers become so stiff and swollen that I cannot pick up a pen, dial my phone, hold my phone, or use my computer mouse. In a flare, my back stiffens to the point I am basically unable to get out of bed or walk.

When having a flare, I contact my rheumatologist for additional medication (such as a prednisone taper) or my pain management doctor for additional medication (such as strong muscle relaxers or oxy or morphine to help deal with the extreme pain.) Technically, to be a flare, the pain or immobility of whatever joints or body parts are involved has to be significantly more than your day-to-day pain or immobility.

This month, I was hospitalized for 15 days due to bacteremia, which is when you get an infection in your blood stream. It is very dangerous, because you can end up with sepsis, which is life-threatening.

The most likely cause, in my case, was my PICC line. So, they had to remove it and send it off to be cultured. The tip was not infected, which is very unusual, so we still aren’t exactly sure what caused this infection

Since they removed the PICC line in my right arm, the next step was to put a new one in my left arm. We faced a problem though. I didn’t have a single vein in my left arm that was wide enough to support a PICC line.

So, instead, I have what is called a “tunneled chest inter-jugular double lumen PICC line.” That sure is a mouthful! It means my new PICC line was tunneled under my skin across my chest, and it is located right above my right breast. It really hurt when they tunneled it. It was a minor surgical procedure.

This is a very inconvenient position. I can’t wear bra because it would put pressure on the PICC line. The lumens either have to come out over the top of clothes or through the underarm, neither of which looks good or feels good.

You have to use stick deoderant because gels or roll-ons will get on the lumens. You can’t face forward in the shower anymore, because you’ll get the PICC wet. Baths and hot tubs are out of the question. And of course, no swimming.

Showering now means sitting on a shower chair with my back to the shower stream, with plastic piecnes over my PICC, and a hairdressing cape (like they use when you have your hair died, when you have it rinsed out) which is velcroed tightly around my neck. Any place covered by this cape, I have to was later with just a wash cloth, because I can’t risk getting the PICC line wet.

My stay at the hospital was far from ideal. The various doctors didn’t seem to communication with each other or the nurses, which lead to me not getting any TPN for over 10 nights! Meds were never on time, and two of my meds have to be timed extremely carefully, which caused some withdrawal symptoms. I won’t go into it further, but it was not a good experience.

I could go on and on about all the things that went wrong during my stay. I could probably write a small book. But that is not what I want to talk about. Just as there were a couple of horrible nurses, there were also many fabulous nurses.

My third day there, a nurse came into my room at shift change. Her face lit up and she cried out “Ms. Jan! Is that you?” It was Nurse Kellie. She took care of me at a different hospital several years ago. I instantly recognized her and was so happy to see her. She is one of the great nurses.

Later that shift, she was giving me meds, and I told her, because they didn’t have TPN for me, I was getting a Dextrose drip and I had to try to eat food orally (which is very difficult when you don’t do that often.) I told her how I wished I had some kind of chocolate bar.

She smiled and said, if you could have any kind of chocolate bar, what kind would it be? I replied, oh that is easy. It would be a Kit Kat bar.

The day went on, and eventually it was the end of her 16-hour shift. As she was introducing me to the next shift nurse, she very quietly placed a Kit Kat bar on my hospital table, with the biggest smile. I couldn’t thank her enough. She had gone down to the cafeteria and bought that Kit Kat for me. And I savored every bite of it. That Kit Kat bar was more than a chocolate bar — it let me know that someone cared about me. At that point, I really needed that!

She was my nurse several more times during my stay, which made me glad because not only was she officiant and responsible, I knew how much she cared about me. It makes a huge difference!

And on the day I finally checked out of the hospital, she was just starting a shift and was at the nurses station. She saw them wheeling me out, and ran over, waving goodbye and saying “Goodbye Ms. Jan! I hope the next time I see you, it won’t be in a hospital!”

Nurse Kellie will always be remembered to me at least, as Kit Kat Kellie – the nurse who cared.

My RBC, hemoglobin and hematacrit have been very low for over 8 months now. Having had chemo done twice in the past 2 ½ years easily explains that, but it is very hard to live any kind of life when these three items are so low.

It leaves you tired, exhausted, sick-to-your-stomach, unable to keep food down, and just feeling like you need to sleep 24/7. If you even sit down in a stiff-back chair, you’ll fall asleep. It can also make your blood pressure very low. One day, mine was 74/43! (and yes, I immediately went to the hospital for that.) It isn’t a great quality of life when you spend 20+ hours a day sleeping!

My RBC is 3.04 which is very low. In range is 3.8-5.10.

My hemoglobin is 8.2 which is dangerously low. In range is 11.7-15.5.

My hematacrit is also low. It is 27.4. In range is 35-45.

I have severe anemia, but not iron-deficient anemia that we typically think of. I have no iron deficiency.

I often get pernicous anemia (a lack of vitamins D and B-12,) because I can’t absorb them due to having short bowel syndrome, but I get injections of these daily through my TPN.

My anemia is pure and simple a lack of red blood cells. This often happens after intensive chemo, but mine is not resolving. There is a good chance my bone marrow isn’t producing enough red blood cells, and the ones that are being produced are the wrong shape and size.

My kidney function is less than half what it was 2 weeks ago (which is very scary.)

My Creatinine is very high (much higher than usual) which shows that something is taxing my liver.

There is a medication that can help me. I’d need to get an injection at a hematology center every two weeks, until my blood levels come up. I’ve been trying to get into one and get set up for months. I’ve been there twice already, but they didn’t feel it was “that bad” and wanted to “wait and see.”

They made my next appointment for the end of October! (which is two months from now!) I did a lot of praying and came to the conclusion that I needed to put on my “pleasantly persistent” persona.

I sent a note to them saying I’m not sure I’ll still be here in 2 months for that next appointment, that I’ve already been in the ER on three different occasions and was hospitalized for 15 days all in the past month, that I am weak and shaky, I’m in the bed 18-22 hours per day, and this isn’t much of a life. I reiterated that I need help NOW, not two months from now. I ended it by simply saying “Please help me!”

I think it hit a chord with them, because the very next day, they called and worked me in, did all the labs they needed to do to prove to the insurance company that I did need this insanely expensive treatment, and I’m now set up for my first four treatments!

“Pleasant persistence” is a very powerful attribute.

UPDATE: After my first Pro Crit treatment, I started to feel better. My labs increased a bit. I felt less tired and less fatigued. Now, three months later, I feel like a new person! My RBC, Hemoglobin, and Hematocrit are still low, but not “scary” low anymore.

Being your own advocate (or being the squeaky wheel) is essential in our healthcare system. I’ve always found that the key is to stay pleasant (pleasantly persistent). Yelling, shouting, and threatening don’t tend to get you anywhere (and besides, those attributes are just not in my nature) but if you stay pleasant, yet insistent, I’ve found you can effectively advocate for yourself and get what you need.

Today was a really tough day for me physically. I was weak, dizzy, nauseous all day, and my balance was really off. And I had a blood lab, a doctor’s appointment, and then my cleaning ladies came (and we all know you have to straighten up a bit before they come.) I was shaking so hard and my vision was blurry. I wasn’t sure I could make it through the day, but I was determined to push myself to try.

But here is the other side of things. I had a doctor’s appt at the time my home health nurse usually comes to my house. She rescheduled my home health to 7am this morning, so I got it done early, and it was done and over with way before my doctor’s appt. What a blessing!

My ride (a volunteer from the American Cancer Society’s Road to Recovery Program) showed up right on time to pick me up. He’s driven for me once before, and he is just a delightful gentleman (who has Multiple Myeloma, a type of blood cancer. He’s had it for 19 years, and does stem cell therapy to keep on keeping on.) He drives as a way of “giving back” to the cancer community. He is a great driver. He likes to have conversations while we drive to the appt. He waits in the waiting room the whole time (reading a book on his phone) and then all the way back we have nice conversations. What a wonderful blessing! We have the nicest chats, and very little of it is about cancer. It is so nice to talk about anything other than cancer!

My cleaning ladies came early today, right after I got home from my doctor’s appt. (Their boss texted and asked me if that would be okay.) I felt so sick, and all I wanted to do when I got home was crawl into bed and rest. Those wonderful cleaning ladies immediate stripped the bed and put on fresh sheets, so I could lay down in my own bed and rest! Wasn’t that thoughtful of them? I told them they could vacuum around the bed and I wouldn’t even notice, and I certainly was true to my word. I’m amazed by their kindness. I hadn’t even asked, but they just realized I wasn’t my usual upbeat self and that I didn’t feel good. What a blessing that was! Little things mean so much!

When I woke up from resting, I felt a bit better. Then we had a huge rainstorm, and I just love the sounds and sights of storms. It takes me back to when I was a small child. When there was thunder and lightning, my dad would call me over to stand next to him by the huge picture window in the front of the house. He’d always say, “Come on, Janice. Let’s watch all the pretty lights in the sky.” Because of him, I’ve never been afraid of thunderstorms. And to this day, I find myself standing at the window, looking for all the pretty lights. What a blessing that was. Somehow, my dad knew just how to take the “scary” part away, and just see the beauty in loud crashing thunder and crackling lightning.

I guess my point is, I could have grumbled all day about things that didn’t go my way, but truth be told, there were more blessings today than I could even imagine until I wrote them down and counted them.

Count your blessings, name them all one by one.
Count your many blessings, see what God has done!

A couple of people have asked me what Short Bowel Syndrome is.  Some people (babies) are born without enough small intestine.  I don’t have that type of Short Bowel Syndrome, and I don’t know enough about it to even try to explain Congenital Short Bowel Syndrome. In my case, I had to have most of my small intestine surgically removed due to something called “radiation enteritis.”   

According to Focus Medica, “Radiation enteritis results from radiation treatments to organs in the abdomen and pelvic areas such as stomach, reproductive organs or rectum. These treatments maybe given for prostate cancer, vaginal cancer, cervical cancer, rectal cancer, anal cancer, lymphoma and other malignancies.

The symptoms include:

Nausea

Vomiting

Rectal pain

Stomach cramping

Watery diarrhea

Rectal bleeding

Mucous discharge from the rectum

Weight loss

Stomach pain which occurs in waves“

According to the Cleveland Clinic, “Radiation enteritis happens when radiation damages sensitive tissue in your intestines. It may occur during treatment or months after you’re finished. Some people experience mild symptoms, while others have long-lasting discomfort and complications.

Other terms that describe this condition include:

Pelvic radiation disease.

Radiation colitis.

Radiation enteropathy.

Radiation-induced bowel disease.

Radiation mucositis.

Acute radiation enteritis typically only lasts a few weeks to months. Chronic radiation enteritis can last for months, years, or for the rest of your life.

Symptoms may include:

Abdominal pain and cramping.

Bloated stomach.

Diarrhea.

Loss of appetite.

Nausea and vomiting.

Pain when you poop.

Rectal bleeding or pain.

Unintended weight loss.

Urgent need to poop.”

The Cleveland Clinic goes on to say that “Ongoing irritation and inflammation in your intestines can lead to:

Dehydration.

Electrolyte imbalances.

Fistula, an abnormal connection between your intestines and a nearby organ.

Intestinal perforation, tears in the lining of your intestines.

Malabsorption, an inability to absorb nutrients from food.

Small bowel obstruction.

Stricture, narrowing of your intestines.

Ulcers, including peptic ulcer disease.”

According to medlineplus.gov, radiation enteritis can also cause adhesions.

Medlineplus.gov goes on to say, “Adhesions are bands of scar-like tissue. Normally, internal tissues and organs have slippery surfaces so they can shift easily as the body moves. Adhesions cause tissues and organs to stick together. They might connect the loops of the intestines to each other, to nearby organs, or to the wall of the abdomen. They can pull sections of the intestines out of place. This may block food from passing through the intestine.

Some adhesions don’t cause any problems. But when they partly or completely block the intestines, they cause symptoms such as:

Severe abdominal pain or cramping

Vomiting

Bloating

An inability to pass gas

Constipation

A symptom the Cleveland Clinic adds is Obstipation (being unable to pass gas or poop).”

Radiation enteritis usually goes away in a few months after radiation treatment, but if it is severe, the effects may be long-term, or even life-long. If it causes bowel obstructions, especially repeated bowel obstructions and hernias, then surgical intervention is required.

When they did pelvic radiation and internal radiation during my first battle with cancer, the radiation burned, inflamed, and destroyed most of my small intestine.   I had multiple adhesions, bowel obstructions, and two hernias in the course of just a few months. It also damaged 4 places on the inside surface of my large intestine and left 7 strictures.

Because of the inflammation, burns, adhesions and strictures, there was no opening left. Imagine a water drainpipe, with all kinds of hard gunk stuck on the inside surface. It wouldn’t let the water drain properly, and if there was too much of it, the drain wouldn’t drain at all. So, in my case, everything I ate got stuck in the first tiny part of the intestine, and in the lower part of my stomach.   It is incredibly painful and requires at least a 10-day hospitalization with an NG tube from your nose to your stomach to slowly and methodically breakdown everything that is stuck into tiny pieces about the size of a pinhead, flood it with a sterile liquid, and then suction everything back out (through your nose.) Gross, eh?  Painful?  You bet. 

If this isn’t done, your intestines or bowels could rip or tear, leading to a life-threatening condition. Having your abdominal cavity suddenly filled with human waste products from a tear in your intestine is a critical situation that is typically fatal. During this 10+ day hospital stay, you aren’t allowed to eat or drink anything! (You are given fluids through an IV.)

A person of my height and weight should have between 610-710 cms of small intestine.  (That’s 20-24 feet for us Americans, who have no concept of the metric system.)   A person typically can’t survive with less than 200cm (6 1/2 feet) of small intestine without some type of medical intervention.  They left more than 6 feet for me, and while it wouldn’t let me eat normally or have normal bathroom habits, I could at least eat, and by taking special vitamins (via injections) I could manage. I did have issues with malnutrition, severe abdominal bloating and pain, and obstipation.

Then the second cancer came along.  Radiation for that was in my neck, mouth, and the back of my head, so it didn’t touch the area around the pelvic region.  However, there were huge parts of my small intestine that still had radiation enteritis and strictures, but they just didn’t remove because I couldn’t survive well without those sections of my bowel. The chemo destroyed most of the rest of my small intestine, leaving me with less than 200cm of functioning small intestine.  The small intestine is where you absorb nutrients, vitamins, minerals, and where bile breaks down wastes.  I can’t do any of those things anymore. 

Without spending 12 hours a day on a TPN pump, I would suffer from malnutrition and slowly starve to death, no matter how much I ate.  So, in that way, TPN is a lifesaving item.  Thank God, it exists, because I couldn’t have survived without it. 

The pictures below, the first one — the white part on top is the stomach connected to a normal small intestine (which is also white.)  The second picture is what my small intestine now looks like.  The white stomach joins the now severely reduced small intestine. The beige-colored part in both pictures is the large intestine (the large bowel.)  Mine is also not like this, because it is damaged by radiation in four places, as well and has seven strictures. 

My large bowel (also called the large intestine) also looks different because I have several strictures. An intestinal stricture is a narrowing in the intestine that makes it difficult for food to pass through. Sometimes, it can lead to intestinal blockage. More often, it causes daily bloating, cramping, severe abdominal pain, and nausea.

Here is a (very blurry) picture of the strictures in my large intestine.

There are 7 strictures in my large intestine which make it difficult to get food to pass through. This, along with my damaged small intestine, means I need to stick to very low-fat foods, no fresh fruits, no dried fruits, no cruciferous vegetables (like broccoli, cauliflower, brussel sprouts, cabbage, etc.,), no seeds, no beans, no legumes, no popcorn, no hard crunchy foods, no nuts, and what veggies I can eat have to be cooked until they are “soft and mushy.”

It is also essential that I eat in small amounts 5 to 6 times per day, rather than regular meals. Currently, I am only able to ingest about 700 calories in a day. Some days, I’m lucky if I manage to eat 300 calories. Fortunately, I have a PICC Line and a TPN pump, that pumps nutrition directly into my bloodstream, near my heart.

It provides about 2,000 calories per day, along with so many vitamins, minerals, and enzymes that my GI system simply can’t absorb at all. This helps prevent malnutrition, rickets, pernicious anemia, and many other life-shortening conditions.

If you’d like to see how I hook-up to TPN each night, you can watch this video of how to use TPN via a PICC Line. Total Parenteral Nutrition Patient Instructional Video (landmarkhc.com)

Chronic (or life-long) radiation enteritis doesn’t normally happen, but they think it happened to me because of my abnormal shape of my pelvis, as well as the metal implants I have.  My pelvis (what is left of it) is much further down, and at a strange angle. Radiation machines are made for a standard skeletal shape, with some adjustment available, but not for the front-to-back slant of my pelvis.  I had even asked my radiation oncologist about this before pelvic radiation. She called the tech support for the manufacturer of the radiation machine, and they told her they didn’t anticipate it would cause any problems. I was assured it was fine.

However, the outcome has been that I now have Short Bowel Syndrome. While I am hopeful that someday I may be able to get off of TPN, my doctors tell me it is not likely. Being on TPN is very costly. My TPN bag costs $1,124 per day. (That is $7,868 per week, or $409,136 per year.) And that price is just for the actual TPN product. There are also costs for the supplies (alcohol wipes, gloves, hand sanitizer, flushes, tubing, caps, arm covers, dressing materials, injection needs, and so on.) Then I have to add the cost of a nurse coming once a week to change the dressing. (The nurses who do this have to be RNs.) On the same day, the nurse also draws 3 blood samples and drops them off at the local lab. There is also the cost of the doctor (in my case, my PCP) who must look at the lab results weekly, put in weekly orders for dressing changes and labs, and meets with me (via telehealth) to discuss any issues that are occurring, and to prescribe any drugs that will be needed to offset any issues. I say all of this to make the point that TPN is not cheap!

The hardest part of living while on a TPN pump is that you really can’t travel. Yes, I can put the pump and TPN in a special backpack if I need to run to the drugstore but if I wanted to go on a vacation, I couldn’t do that. TPN has be refrigerated at all times. A week’s worth is delivered on Friday by refrigerated delivery. I must be home on Mondays for labs and dressing changes. I must be home on Fridays to receive the actual TPN for the following week. TPN only stays usable for about 8 days, so you can’t just get some early. Trying to get a cooler of TPN as a carry-on on a plane is a nightmare (from what I’ve been told, and they can insist on taking a sample of the liquid, which makes the rest of the bag unusable.) If you check the cooler on as checked luggage, and somehow it gets lost on the way, that would be very serious. (It can take 24-48 hours for a specialized pharmacist to make TPN and deliver it, and there is often no process for replacing lost bags.)

TPN bags (especially when full or during the first 6-8 hours) are incredibly heavy, and hard to carry on one arm. (You can’t carry it with the arm that has the PICC Line in it, because it exceeds the weight restrictions.) That means, I would have to carry the TPN backpack on my left shoulder, and I limp on my left side. When you add that much weight to my weak side, it makes walking a bit concerning.

There is also some information that has to be faced by people who will need TPN for the rest of their lives. According to AmeriPharma Specialty Care, “Roughly half of all patients receiving TPN will require either long-term or permanent TPN treatment. The vast majority of patients on permanent TPN receive therapy in the comfort of their own homes. In the United States, there are approximately 40,000 people who receive TPN therapy at home. TPN solutions have essential nutrients, and they typically include fluids, proteins, sugars, vitamins, and other electrolytes. 

Although TPN may offer many people who do not have fully functional intestines the opportunity to live long and productive lives, patients who are receiving TPN are always at an increased risk for complications related to the procedure.

Possible complications include:

TPN-induced liver damage or, in worse cases, liver failure (TPN-induced liver failure is more common in children than it is in adults)

Weak or brittle bones

Inflammation of the gallbladder

Frequent infections in the central-vein access lines

Blood clotting in central access veins

Refeeding syndrome (a serious condition that might happen if your body doesn’t process the TPN nutrients as expected, leading to electrolytes/fluids imbalance which could be potentially fatal in some cases)

Patients who are receiving TPN and suddenly develop a fever or notice any change in the skin in the area around their central line should immediately contact their healthcare provider and go to the emergency room as this most likely indicates that they have an infection.

Because TPN severely limits daily activities, some people who receive it on a long-term basis may experience difficulties in their social lives.

When determining the outcome for patients being treated with TPN, the underlying cause of the intestinal failure needs to be considered, and this would affect the long-term survival prospect for those patients. TPN-dependent patients have a 3-year survival chance of about 65 to 80%.

So, life with a TPN pump can be very restrictive, although I do have to add thank goodness for TPN. I wouldn’t be here without it.

Once you get home, there are many items that can help you with your recovery, such as adjustable beds, assistive devices, bidets, bedside commodes, and specialized pillows and wedges.

I used to be a teacher.
Before that, I was a city supervisor.
Here and there, I’ve been a writer.

Now, I am a nothing.
I sit in a house, day-in and day-out
without anyone to talk to.

I live for Mondays, when the home nurse
comes to take my blood work and change
my PICC Line dressing
because it is 20 minutes of conversation
I don’t typically get.

My hobbies are gone.
My job and volunteer work are gone.
I’m completely unreliable
because I never know if I’ll have the energy
or ability to do anything.

I’m so hungry sometimes
while food spoils in the fridge
because I don’t have the strength or
the energy to actually cook it.

Anything I try to make my life better
fails
just like me.
A complete and total failure
sitting alone day after day.

Be patient, they tell me
Your body needs time to heal
as months and months pass
and very little changes.

The years pass
and very little changes.
And all I can say is,
“I used to be . . .”

Often, cervical cancer metastasizes in the mouth, tongue, or throat. Here are some products that can help when going through head and neck radiation and aggressive chemo. I hope you can find some products that will make your life easier during this trying time.

When you have a chronic illness or are living with multiple life-changing conditions, it impacts every aspect of your life.  Progressive disabilities are thieves who steal our inclusion in daily life, as well.  Things you once did and enjoyed slowly and relentlessly are stolen from you, until even with adaptation they merely bring you frustration and irritation instead of the joy they once contained.

Your friends and former colleagues drift away because they don’t know what to say or what to do.  Phone calls, video calls, and even social media posts and messages grow more and more difficult because it is hard for people who care about you to see you in pain, especially when there is nothing that can be done about it.  Communication between you and former dear friends becomes infrequent, shorter in duration, further apart in frequency, and often ceases altogether. 

It becomes harder and harder for you to maintain friendships and relationships as your world becomes smaller, and the only events or experiences you have to share are medical or pain-related ones.  While your friends discuss the activities in their lives, you really have nothing to add unless you discuss your illness, and that gets tiresome to all involved. 

While they are happily telling you about a concert they attended last week, you are all too aware that you haven’t been to a concert in several years.  As they tell you about all the goings-on at work, you are reminded that you are no longer able to work, and very well may never be able to work again.  As you listen to them tell you about a recent vacation, it saddens you to recall that you are no longer able to enjoy such holidays.   If they talk about a wonderful restaurant they recently visited, you regretfully remember that you are unable to eat those types of food anymore, that you can’t have any alcoholic drinks anymore, and that even sweet treats are something from which you must abstain.  It doesn’t make for an enjoyable conversation for either person. 

When you are dealing with a variety of issues (such as sun sensitivity, food restrictions, urinary incontinence, fecal incontinence, overwhelming fatigue, blurry vision that prevents you from driving, extreme nausea, intractable pain, taking strong medications that leave you drowsy and unable to logically converse, etc.) it can make social events all but impossible. 

The unexpected nature of many chronic illnesses can cause you to frequently have to cancel plans, even though you really want to participate.  When you frequently cancel, or when it takes a herculean effort to include you, people stop asking you, and your social life can become non-existent. 

You may have to cancel because you are extremely unwell that day, because of an unplanned hospitalization or medical treatment, or an unexpected reaction to a new medication.  Sometimes, you have to cancel for reasons you really don’t want to share – like the lack of a handicapped restroom where you are going, a long walk from the parking lot to the event site, or the realization that the event is held in a historic building and you’d have to climb stairs, which you can’t do.

When the world is not as accessible as it needs to be, when illness takes your strength and energy, and chronic fatigue and malaise leave your thoughts muddled and confused, it is difficult to feel included and hard to be involved. The barriers to inclusion sometimes seem insurmountable and leave you with a quality of life that you wouldn’t wish on your worst enemy. How many times can you be the scorekeeper in the kickball game of life?

I tend to be a person who thinks of what I can do rather than what I can’t do.  I tend to look for the joy in situations rather than let myself be unhappy.  Just for today, I am allowing myself to do something I have never fully done before – think of what I can’t do.   I sometimes start along this path, but become overwhelmed by the sheer enormity of what I can’t do.  Then I have to stop simply to spare myself from the magnitude of it. 

First, there are the things I have never been able to do.  These include things like snow skiing, water skiing, digging a hole with a shovel, holding a baby on my hip, sitting cross-legged, being pregnant or giving birth, playing contact sports, running races – things like these. 

Second, there are the things I once could do, but no longer can.  This list is so much longer.  These leave a sorrowful place in my heart.  I once could ride a regular bike, sit on the floor, run, climb a tree or ladder, walk a mile or two, sit on low furniture, walk on soft sand, wear flip-flops, ride a horse, go canoeing, swim in a lake, roller skate (although that always was a struggle,) bend and pick things up from the floor, lift heavy boxes, go camping and sleep in a sleeping bag, climb stairs, do intricate embroidery and needle crafts, hold a book in my hands to read it, open a soda can or a water bottle, walk my dog, do martial arts, manually type without having to use speech-to-text, use a cell phone without hitting multiple buttons by mistake and disconnecting, partner dancing, walking across a grassy field, mowing my lawn, line dancing, vacuum my house, mop the kitchen floor, taking a bath instead of a shower, riding on the back of a motorcycle, playing the guitar, standing in front of a classroom, eating at a restaurant (due to extreme food restrictions), traveling in any way other than a medical transport, holding a baby in my arms, singing songs and hymns in a clear, beautiful voice, and even working a full-time job.  It also includes things that I’d prefer not to mention, like being sexually intimate, or reliably continent.  The list is so long that I’ve only been able to touch upon the substantiality of it.    

You learn to lie about how you are doing.  People ask how you are doing, but they don’t really want to know unless it is mostly good news.  I can’t blame them for that – it is human nature.

I can’t bring myself to lie when I’m asked, “how are you?” by saying “I’m fine.” so I usually respond, “Oh, I’m hanging in there.”  Or “Well, I can’t complain.  Well, I could, but who wants to hear that?” with a well-timed laugh.  It ends the query and allows me to quickly change the subject.    How many times can you tell a friend that you are not doing well, or that you are getting worse?  “How are you?” isn’t really a question in our society.  It is a greeting with an expected response of “I’m fine.” or a very brief mention of a small (and somewhat insignificant) problem.

We all have something about ourselves that we wish we could change – the shape of our nose, the texture of our hair, our figure, etc.  At times, these things can make us feel like something is wrong with us, or if only we could change some basic feature, our lives would somehow be enhanced or that true happiness would await us.  Some things we can change, by getting a perm, having our teeth straightened, or devoting ourselves to a rigorous exercise routine and healthful diet. 

For others of us, what makes us feel like an outsider cannot be fixed or changed.  People with facial skin discolorations, burns, or growths, people who are missing body parts, or who have congenital malformations that can’t be changed – these people are in a different category than those who simply abhor their Roman nose, their frizzy hair, or flabby thighs and thick ankles.

There is part of a poem I learned as a child that says, “I cried because I had no shoes, and then I met a man who had no feet.”  It is supposed to convey the message that the boy with no shoes has nothing really to complain about because others are much worse off in the world.  In my mind, I despise this poem.  While it is very sad that a person has no feet, it certainly doesn’t minimize the fact that the boy with no shoes has a problem, too.  He still doesn’t have any shoes! 

I’ve always thought that minimizing someone’s problem by reminding them that others have it worse conveys the message that your issues, your problems, are not really a big deal, and you are wrong to have even commented on them or concerned yourself with them.  Well, if I lived in Wisconsin in the winter and had no shoes, my “problem” is very real to me, regardless of who is in a worse condition. 

When we remind others that their problems aren’t really significant, we are judging their life journey, and finding their needs and concerns to be inconsequential.  I don’t believe in minimizing a person’s needs or insecurities by insisting that their perceived problem isn’t so bad.

For most of us, others barely notice what bothers us.  But for a few of us, our issues are hard to ignore.  Even the most compassionate person has a hard time not turning away from a person with severe, disfiguring facial burns.  We certainly don’t think “Wow, I’d like to get to know that person.” when we walk past them on the sidewalk.   We look away and then get away as quickly (and as unnoticeably) as we can.  (And later, we feel very bad about having done that.)

While not as extreme as having disfiguring, gruesome facial wounds, those of us born with functional disabilities fit into another category – those who used to fit in but who are now an outsider.  Those of us with progressive disabilities and chronic illnesses often find ourselves pulled from “fitting in” to being an outsider as our illness progresses, and our limitations increase. 

Many times, our loved ones react in strange ways to our progressive medical and physical changes.  Some blame us as if we caused it to happen.  Some feel that we should be able to do everything we did before if only we’d really try and stop being lazy. 

Some pretend the changes aren’t even there, which leaves the person with the progressive disability or chronic illness feeling gaslit.  And some of our loved ones think they can “cure” us, and become angry with us if we aren’t willing to try every crackpot idea they’ve read about (even though our own doctors insist it won’t help or could actually make things much worse.)  Often, it can be as if our loved one blames us if their efforts don’t lead to a cure.  This is especially difficult, because it changes (and often ruins) the dynamics of relationships, at the same time both are struggling to cope and need the support of the other so much. 

While I’m not claiming that one type of loneliness is harder to deal with than another, I am stating that there are different types of loneliness.  Some we can change, by learning social skills, seeking out like-minded individuals, or putting ourselves in situations where we will meet others whom we might enjoy.  For others, the progression of illness and the unreliability of wellness pulls us away from almost all kinds of social inclusion.   We no longer fit-in with our old friends, and we are too isolated by our medical issues to make new friends. This type of loneliness includes the mournfulness of great loss and an overwhelming sense of defeat.

Current research shows that a household with a disabled adult has 28 percent more expenses than a non-disabled adult household to have the same standard of living, which is currently an average of an additional $17,690 a year. (Source: National Disability Institute, The Extra Costs of Living with a Disability in the U.S., 2020.)   This doesn’t include the extra expense for households where an adult is in active treatment for a life-threatening disease, such as cancer or lung disease. 

People with progressive disabilities and/or treatment for active serious illnesses, can also face bankrupting medical expenses even with excellent insurance, and progressive disabilities and life-threatening illnesses often result in the person having to be underemployed, or unable to earn any income at all.  Even for those who turn to disability (SSDI) the amount is less than 40% of their prior income, while their expenses are significantly more than when they were able to work. 

Do me a favor?  Write down your annual income.  Now, multiply it by 0.40.  That will give you 40% of your current annual income.  Now take that amount and multiply it by 0.28.  You will need to subtract that amount from the 40% of your previous income. That will account for the extra expenses that a disabled person encounters (not an ill patient, just a disabled adult.)  Now divide that amount by 12.  That would be your base income as a disabled adult.  (There would also be other expenses, such as insurance premiums, co-pays, and non-covered medications, but we’ll leave that alone for this example.)

So, let’s say you typically earn about $50,000 per year from working.  That means that 40% of that is $20,000. That would leave you $1,667 per month.  Even without accounting for the 28 percent additional costs that disabled adults incur, could you live on $1,667?  Would that cover your mortgage/rent, car, gas, car repairs, home/renters’ insurance, health insurance, taxes, medical co-pays, non-covered medications, dental visits, eye exams and glasses, groceries, wi-fi, basic streaming, etc.?  What if you have a pet?  Would you be able to cover vet costs, dog/cat food, etc.?  So instead of having $4,167 per month as an employed person, you would have to live on $1,667.  Could you do that?  Would you still be able to do the things your friend that are in your previous earning’s bracket do, or would you no longer have the funds to participate?  Would you struggle to keep your home or pay your rent, to pay your property taxes, or pay your car insurance? 

This loss of income, and constant financial struggle, leads to not being able to live the lifestyle the person was accustomed to.  The lack of money often leads to further isolation as the person can no longer afford things like a night out, sporting events, meals at restaurants, or participating in gift giving.  Even being invited to something as innocuous as a potluck is difficult when you are food insecure, especially when none of your friends or colleagues can even conceive of being in that situation, based on your former lifestyle. 

The change in lifestyle caused by lack of mobility, the effects of strong medications, hospitalizations, medical procedures, pain and fatigue are only the tip of the iceberg when it comes to the isolation, anxiety, and loneliness of having a chronic illness or a progressive disability. The compounding effects of financial instability, food and medication insecurity, and medical treatment costs leads to stress and distress that causes trauma and anxiety which lead to even more isolation and loneliness. The financial burdens of chronic illnesses and progressive disabilities are more complex and far-reaching than most people realize.

Where were you when you learned
that your cancer had metastasized?

I was home, alone, listening to a voice
on the other end of a phone
wondering if I was really hearing
what I thought I heard?

Where were you
while I was having it biopsied?

Bravely doing it without sedation
just because I’m a tough.

Where are you, as I’m losing my voice
and possibly my mind,
while I’m researching like mad
hoping
that it doesn’t mean what I know
it means.

When the biopsy reports came in
who held my hand as the doctor said
it is even more advanced than I thought?

My hand was, of course, empty.

You’ve never seen a stiffer upper lip.
The Brits would be proud of me.
but I’m not a Brit.

I listened to the words
“Stage 4” and “inoperable”
I almost, in my mind, decided no more treatment
until he told me, treatment won’t cure. Treatment
won’t even prolong, but it can make your passing
more comfortable. They call it “comfort chemo” and I
cannot imagine two more contradictory words.

I’ve already started to lose my voice.
It is whispy, and raspy, and
sometimes I say words, only to realize
that no sound came out.

And as if that wasn’t enough
to bear
today, the biopsies from my throat, my stomach, my intestines
my entire GI system, came back.
Words like immune caused chronic gastritis,
precancerous polyps and the beginnings of stomach
cancer stand out.

No wonder I can’t eat much.

And through all of this, I’ve stood strong
Until today, when I broke-down because of stupid things
three times — because the van driver asked
me a question, I answered but no words came
out of my mouth, and she yelled at me.

Stage 4. Inoperable. Comfort chemo. Hospice,
rehoming my precious pup — for those I stood brave
and didn’t break. Refused to break.
But a van driver I’ll probably never see again in my life
yelled at me unfairly, and I crumbled.

Sometimes I think, oh how the mighty have fallen, but
I am not one of the mighty.
In my heart I’ve always been just a small
person, wanting to help others and live a small
life.

I want to talk, and chat about happy things,
pleasant memories, hopes and dreams,
and our favorite flavor of ice cream,
play board games, watch the sunset
in comfy chairs with our favorite beverages
with a group of friends who
feel as at home
as if they were family.

I just want Sunday night family phone calls
and visits that seem to come out of nowhere.
But you can’t manufacture these.
You either have them or you don’t.
And I don’t.

My parents had these things, and I so happily
lived vicariously through theirs.
I want one last Thanksgiving with a crowded table,
Mom’s Christmas china,
people by the TV cheering on their favorite teams
or scowling at an ump’s bad call.

But my heart knows, it will never be again.

I am brave. I am strong. I know both of these things,
you don’t need to tell me.
But my heart is not made of stone.

My life right now is so empty.
For whatever reason, my life never entwined
with anyone else. There were no
dates, or boyfriends, or girls’ nights out
or even a friend I could say, hey, let’s go shopping
or two a movie, or to a craft fair.
It all seemed to be an art I never learned.

And while I know the time and day for these things
is long gone
it doesn’t keep me from craving it all the more.

A week at a peaceful Michigan lake in an A-frame, a walk
in the woods, or playing croquet (of the most vicious variety)
in a flat square grass. Somehow, even things like that
have been beyond my grasp
for as long as I can remember.

I never wished for riches, or power, or fame.
I just wanted Thanksgiving crowded with family
I knew and loved, making all of our favorite foods
while some stayed up talking into the small hours
of the morning,
while others toddle off to bed in the early hours
with a to do list that guides each early rise,
and fills their lives with purpose.

Now, I fight the sleep at night, afraid that I may not wake up at all.,
and knowing that all too soon
that will be true.

(written on August 24, 2023 by Jan Mariet Thomas)

I was born with a disability that progressed as I grew and aged. My loss of mobility was much greater than was ever expected. Nineteen surgical reconstructions helped slow it down a bit, but nothing could stop the eventual loss of my mobility.

I had a career I loved. My disability’s progression ended my ability to do that job (even with accommodations, which were not an available option back when this happened.) I had a master’s degree in my field, 12 years of successful experience, and had worked my way from an entry-level position to a top management position in a relatively short time.

And just like that, it was gone. I couldn’t physically do it anymore.

Losing your mobility is difficult. Losing your job at the same time (which also meant losing my health insurance, at a time when a disabled person couldn’t get health insurance outside of a workplace) was devastating.

That was over 25 years ago. I took some classes, got certified in another field that I could physically do, and began a new career. Again, it was a job I loved. And then, after 20 years in my new career, once again, a physical issue made me unable to continue at that job, or any job.

Inflammatory arthritis and ankylosing spondylitis left me almost bedridden and in so much pain. Just when I thought it couldn’t get worse, I was diagnosed with invasive cancer.

Throughout all of this, adaptability was my best ally. A bit lost without the ability to work anymore, I took the chance to write and publish a book, which had been a dream of mine since I was a teen.

When your circumstances alter your life, you really only have two options — let it destroy you or embrace adaptability.

Sometimes, the treatment for cancer can cause short-term and long-term issues that you never expected. Here are some items that can help a person through cancer surgery, radiation, chemo, or brachytherapy.

There are also many items that can help friends and family of cancer patients to both help them through the process, and to let them know that they are loved and cared for.

Crohn’s Disease and IBD can make life very difficult. Gut pain, bloating, anal discharge, urgency, and fecal incontinence are all difficult subjects to discuss. Here is a list of items that have made my life with Crohn’s Disease a bit easier.

Here are some items I personally recommended that can help make your life with Crohn’s or IBD so much easier. I have personally purchased and/or used every item I recommend. These are items that help me get through my day with Crohn’s.

By means of full disclosure, I may earn a small commission from Amazon for links to any products or services from this website.

After you finish cancer treatment, you have imaging often at the six month and one year mark, and then several more times during the first five years to make sure the cancer hasn’t reappeared.

They don’t say you are “cured” from cancer. They rarely say you are in remission. What is normally observed is that you are NED.

NED stands for “no evidence of disease.” It means they no longer see any signs of your cancer. Those of us who have gone through this always know, in the back of our minds, that even if one tiny, microscopic spec of cancer still remains, it can and probably will, be back. This is called a reoccurrence if it returns to the same or neighboring area, or if it travels using your lymphatic system, it tends to metastasize elsewhere in your body, such as your lymph nodes, or your lungs.

No matter how hopeful and how positive you are, if you’ve been in a cancer support group for any length of time, you will know someone who was NED, who seemed to beat cancer, who suddenly finds it roaring its ugly head, and within days or weeks, it overwhelms their body, and they slip away.

A single, solitary thought goes through cancer survivors’ heads — “if I’m still alive . . . ” We all know, even if we never express it, how tentative life is, and how quickly the disease we “survived” can snatch us away.

It took me 6 months after my first NED to stop thinking “If I’m still alive . . .” when I thought about the future — as in, “I’d like to go to the craft festival, if I’m still alive then.” Cancer changes you in ways others who have not experienced it will never understand.

You get treatment, you sort of recover from the treatment, you get NED, and everything seems fine — until it’s not. I lost both of my parents to cancer, and in both cases, things seemed fine, until it metastasized and dealt its final blow.

No matter how much you know it can return, when your life returns to normal and all is well, it is still a shock when it returns. You think you have beaten a great enemy, that you have won fierce battle, and slain the enemy, only to have it reappear and let you know exactly how puny we humans really are — that a microscopic cell could snatch our victory — how fragile the human condition is.

I have no illusions. Cancer is rarely “gone.” It lies sleeping just outside our view until with a lightning strike it jolts you out of your comfortable rest.

I just try to enjoy each day, live that day as it happens, and not worry too much about the future. I like to stay busy in the present since it’s the only thing we can really be sure of.

There is a poem I read for the first time in college, called Musee des Beaux Arts by W.H. Auden. I found the words haunting back then, and after battling and surviving cancer, they ring even more true.

Musée des Beaux Arts

by W.H. Auden

December 1938

About suffering they were never wrong,

The Old Masters: how well they understood

Its human position; how it takes place

While someone else is eating or opening a window or just walking dully along

How, when the aged are reverently, passionately waiting

For the miraculous birth, there always must be

Children who did not specially want it to happen, skating

On a pond at the edge of the wood:

They never forgot

That even the dreadful martyrdom must run its course

Anyhow in a corner, some untidy spot

Where the dogs go on with their doggy life and the torturer's horse

Scratches its innocent behind on a tree.


In Brueghel's Icarus, for instance: how everything turns away

Quite leisurely from the disaster; the ploughman may

Have heard the splash, the forsaken cry, 

But for him it was not an important failure; the sun shone

As it had to on the white legs disappearing into the green

Water; and the expensive delicate ship that must have seen

Something amazing, a boy falling out of the sky

Had somewhere to get to and sailed calmly on.

A few close people will feel our loss, at least for a while. Certainly, Daedalus mourned his son, Icarus as he fell to his death. To Daedalus, the loss of his son, Icarus, was a great tragedy. But the rest of world, as portrayed in Breughel’s famous painting Icarus, pays little notice to the boy sinking below the water to his death.

In a similar way, whether we win or lose our battle with cancer, the world goes on just as it always does. We never know if we are soaring too close to the sun, melting the wax that holds us together, and plunging us into the icy waters of the unknown.

Are you wondering what treatment options are available for psoriatic arthritis?  Has your doctor asked you to make a choice between two treatments, and you feel overwhelmed by such a decision because you don’t really understand the options?  Or do you just want to read reviews of PsA medications from others who use specific drug treatments?  If so, this blog post is for you!

The site called drugs.com has a page dedicated to reviews by people with PsA using specific drugs.  Some of the drugs only have a few reviews, but others have hundreds of reviews.  It’s worth a look.  https://www.drugs.com/condition/psoriatic-arthritis.html

The Arthritis Foundation has a wealth of knowledge about different types of treatments for PsA.  This article provides a great overview,  https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/treatment-options-for-psoriatic-arthritis

Another great article through the Arthritis Foundation is Alice Goodman’s Treatment Guidelines for Psoriatic Arthritis.  It offers many recommendations to help guide doctors’ and patients’ shared decisions about treatments.  This is definitely a worthwhile read.  https://www.arthritis.org/health-wellness/treatment/treatment-plan/you-your-doctor/treatment-guidelines-for-psoriatic-arthritis-arthr

If you want to know more about how biologics work and the different types, this Arthritis Foundation article is very informative.  https://www.arthritis.org/drug-guide/biologics/biologics

If you are a total newbie with psoriatic arthritis, a good overview of all things PsA related is the Cleveland Clinic.  https://my.clevelandclinic.org/health/diseases/13286-psoriatic-arthritis   It’s a great place to start.

The last article I’m recommending is https://www.verywellhealth.com/biologics-for-psoriatic-arthritis-5190400  This article explains the differences between all of the currently approved biologics (in the USA), and discusses PsA treatment in concise, easy-to-understand terms. 

If you are having a hard time getting your family, friends, and colleagues to understand exactly what psoriatic arthritis is and the challenges it involves, I invite you to read my article, When Your Loved One Has Psoriatic Arthritis (PsA), at https://janmariet.com/when-your-loved-one-has-psoriatic-arthritis-psa/   This article can help you educate others on exactly what it means to have psoriatic arthritis.

I’d also like to provide you with a link to my Products That Make Life Easier with Psoriatic Arthritis, Plantar Fasciitis, and Enthesitis post at https://janmariet.com/products-that-make-life-easier-with-psoriatic-arthritis-plantar-fasciitis-and-enthesitis/  It is a list of adaptive products that I own and use to help me with activities of daily living with psoriatic arthritis.  You may find an adaptive product you never even knew existed, that can help you lead a fuller and more robust life. 

If you’ve found any of these articles helpful, if you have questions, or if you have resources to share, make sure and leave a comment below. I look forward to hearing from you!

Heredity is a strange thing.  It can give your child shimmering blue eyes, dark, long lashes, or a large, Roman nose.  You can end up with a slender build, a large bust, a short stature, dimples, or male-pattern baldness. 

Heredity can lead to some wonderful happenstances – like cousins who look like twins, or coppery red hair generation after generation.  Heredity can also lead to some unpleasant issues, like rheumatoid arthritis, kidney disease, or congenital deafness. 

It almost seems cruel that within a family tree, some have tendencies toward being healthy and robust, while others find themselves on the losing side of the genetic crapshoot we call life.  Even among siblings and cousins, the genetic roulette wheel treats some to great fortune while leaving other family members in a completely different situation.

While I am one of those people who finds themselves with a variety of conditions that tend to be caused by the negative part of genetics, there are several traits I quite knowingly obtained from certain family members and ancestors, and those are fortitude, perseverance, stick-with-it-ness, sheer determination, and adaptability. 

It is also true that there are other things I quite knowingly gleaned from my family tree. Some I have directly inherited, while others are believed to have a strong genetic component.

• Congenital hip dysplasia (Developmental hip dysplasia)
• Psoriatic arthritis
• Ankylosing Spondylitis
• Degenerative Disk Disease
• Crohn’s Disease
• Inflammatory Bowel Disease
• Chronic Kidney Disease
• Scoliosis
• Spinal Stenosis
• Sjogren’s Disease
• Myotonic Dystrophy, Type 2

We have no control over having an inherited condition.   It is as randomly assigned as eye color or foot size.  However, what you make of these conditions is within your purview.  No one denies that having chronic conditions which cause you pain and disability can be overwhelming.  Personally, I think that finding those small moments of joy, that beautiful sunset, that walk with a friend, or a new bloom in your garden, are the small victories that make life worth living.   It doesn’t reduce or relieve the pain, it doesn’t improve your mobility, cure your anxiety, or fix your medical issues, but for that brief moment in time, joy can be the best medicine there is.

Life does not mete out pain, illness, or disability fairly.  Sometimes — most of the time, actually — we just have to make the best of what life has given us and find joy where we can.   

Let’s face it, Psoriatic Arthritis (PsA) shows its ugly head in so many ways and forms. From Dactylitis (Sausage Fingers and Toes,) Plantar Fasciitis, Enthesitis (which is were the tendons and ligaments pull away from their bone insertion points) causing hand or foot weakness, grip exhaustion, the inability to open jars and containers, and even sometimes the inability to hold on to regular silverware, stiff backs and necks, stiffness and immobility — this autoimmune disease has more faces than a clock shop.

Here are some items I personally recommended that can help make your life with PsA so much easier. I have personally purchased and/or used every item I recommend. These are items that help me get through my day with PsA.

In case you’ve lost track:

Thurston High School

Columbine High School

Heritage High School

Deming Middle School

Fort Gibson Middle School

Buell Elementary School

Lake Worth Middle School

University of Arkansas

Junipero Serra High School

Santana High School

Bishop Neumann High School

Pacific Lutheran University

Granite Hills High School

Lew Wallace High School

Martin Luther King, Jr High School

Appalachian School of Law

Washington High School

Conception Abbey

Benjamin Tasker Middle School

University of Arizona

Lincoln High School

John McDonogh High School

Red Lion Area Junior High School

Case Western Reserve University

Rocori High School

Ballou High School

Randallstown High School

Bowen High School

Red Lake Senior High School

Harlan Community Academy High School

Campbell County High School

Milwee Middle School

Roseburg High School

Pine Middle School

Essex Elementary School

Duquesne University

Platte Canyon High School

Weston High School

West Nickel Mines School

Joplin Memorial Middle School

Henry Foss High School

Compton Centennial High School

Virginia Tech

Success Tech Academy

Miami Carol City Senior High School

Hamilton High School

Louisiana Technical College

Mitchell High School

EO Green Junior High School

Northern Illinois University

Lakota Middle School

Knoxville Central High School

Willoughby South High School

Henry Ford High School

University of Central Arkansas

Dillard High School

Dunbar High School

Hampton University

Harvard College

Larose-Cut Off Middle School

International Studies Academy

Skyline College

Discovery Middle School

University of Alabama

DeKalb School

Deer Creek Middle School

Ohio State University

Mumford High School

University of Texas

Kelly Elementary School

Marinette High School

Aurora Central High School

Millard South High School

Martinsville West Middle School

Worthing High School

Millard South High School

Highlands Intermediate School

Cape Fear High School

Chardon High School

Episcopal School of Jacksonville

Oikos University

Hamilton High School

Perry Hall School

Normal Community High School

University of South Alabama

Banner Academy South

University of Southern California

Sandy Hook Elementary School

Apostolic Revival Center Christian School

Taft Union High School

Osborn High School

Stevens Institute of Business and Arts

Hazard Community and Technical College

Chicago State University

Lone Star College-North

Cesar Chavez High School

Price Middle School

University of Central Florida

New River Community College

Grambling State University

Massachusetts Institute of Technology

Ossie Ware Mitchell Middle School

Ronald E McNair Discovery Academy

North Panola High School

Carver High School

Agape Christian Academy

Sparks Middle School

North Carolina A&T State University

Stephenson High School

Brashear High School

West Orange High School

Arapahoe High School

Edison High School

Liberty Technology Magnet High School

Hillhouse High School

Berrendo Middle School

Purdue University

South Carolina State University

Los Angeles Valley College

Charles F Brush High School

University of Southern California

Georgia Regents University

Academy of Knowledge Preschool

Benjamin Banneker High School

D H Conley High School

East English Village Preparatory Academy

Paine College

Georgia Gwinnett College

John F Kennedy High School

Seattle Pacific University

Reynolds High School

Indiana State University

Albemarle High School

Fern Creek Traditional High School

Langston Hughes High School

Marysville Pilchuck High School

Florida State University

Miami Carol City High School

Rogers State University

Rosemary Anderson High School

Wisconsin Lutheran High School

Frederick High School

Tenaya Middle School

Bethune-Cookman University

Pershing Elementary School

Wayne Community College

JB Martin Middle School

Southwestern Classical Academy

Savannah State University

Harrisburg High School

Umpqua Community College

Northern Arizona University

Texas Southern University

Tennessee State University

Winston-Salem State University

Mojave High School

Lawrence Central High School

Franklin High School

Muskegon Heights High School

Independence High School

Madison High School

Antigo High School

University of California-Los Angeles

Jeremiah Burke High School

Alpine High School

Townville Elementary School

Vigor High School

Linden McKinley STEM Academy

June Jordan High School for Equity

Union Middle School

Mueller Park Junior High School

West Liberty-Salem High School

University of Washington

King City High School

North Park Elementary School

North Lake College

Freeman High School

Mattoon High School

Rancho Tehama Elementary School

Aztec High School

Wake Forest University

Italy High School

NET Charter High School

Marshall County High School

Sal Castro Middle School

Marjory Stoneman Douglas High School

Great Mills High School

Central Michigan University

Huffman High School

Frederick Douglass High School

Forest High School

Highland High School

Dixon High School

Santa Fe High School

Noblesville West Middle School

University of North Carolina Charlotte

STEM School Highlands Ranch

Edgewood High School

Palm Beach Central High School

Providence Career & Technical Academy

Fairley High School (school bus)

Canyon Springs High School

Dennis Intermediate School

Florida International University

Central Elementary School

Cascade Middle School

Davidson High School

Prairie View A & M University

Altascocita High School

Central Academy of Excellence

Cleveland High School

Robert E Lee High School

Cheyenne South High School

Grambling State University

Blountsville Elementary School

Holmes County, Mississippi (school bus)

Prescott High School

College of the Mainland

Wynbrooke Elementary School

UNC Charlotte

Riverview Florida (school bus)

Second Chance High School

Carman-Ainsworth High School

Williwaw Elementary School

Monroe Clark Middle School

Central Catholic High School

Jeanette High School

Eastern Hills High School

DeAnza High School

Ridgway High School

Reginald F Lewis High School

Saugus High School

Pleasantville High School

Waukesha South High School

Oshkosh High School

Catholic Academy of New Haven

Bellaire High School

North Crowley High School

McAuliffe Elementary School

South Oak Cliff High School

Texas A&M University-Commerce

Sonora High School

Western Illinois University

Oxford High School

Robb Elementary SchoolThurston High School

Columbine High School

Heritage High School

Deming Middle School

Fort Gibson Middle School

Buell Elementary School

Lake Worth Middle School

University of Arkansas

Junipero Serra High School

Santana High School

Bishop Neumann High School

Pacific Lutheran University

Granite Hills High School

Lew Wallace High School

Martin Luther King, Jr High School

Appalachian School of Law

Washington High School

Conception Abbey

Benjamin Tasker Middle School

University of Arizona

Lincoln High School

John McDonogh High School

Red Lion Area Junior High School

Case Western Reserve University

Rocori High School

Ballou High School

Randallstown High School

Bowen High School

Red Lake Senior High School

Harlan Community Academy High School

Campbell County High School

Milwee Middle School

Roseburg High School

Pine Middle School

Essex Elementary School

Duquesne University

Platte Canyon High School

Weston High School

West Nickel Mines School

Joplin Memorial Middle School

Henry Foss High School

Compton Centennial High School

Virginia Tech

Success Tech Academy

Miami Carol City Senior High School

Hamilton High School

Louisiana Technical College

Mitchell High School

EO Green Junior High School

Northern Illinois University

Lakota Middle School

Knoxville Central High School

Willoughby South High School

Henry Ford High School

University of Central Arkansas

Dillard High School

Dunbar High School

Hampton University

Harvard College

Larose-Cut Off Middle School

International Studies Academy

Skyline College

Discovery Middle School

University of Alabama

DeKalb School

Deer Creek Middle School

Ohio State University

Mumford High School

University of Texas

Kelly Elementary School

Marinette High School

Aurora Central High School

Millard South High School

Martinsville West Middle School

Worthing High School

Millard South High School

Highlands Intermediate School

Cape Fear High School

Chardon High School

Episcopal School of Jacksonville

Oikos University

Hamilton High School

Perry Hall School

Normal Community High School

University of South Alabama

Banner Academy South

University of Southern California

Sandy Hook Elementary School

Apostolic Revival Center Christian School

Taft Union High School

Osborn High School

Stevens Institute of Business and Arts

Hazard Community and Technical College

Chicago State University

Lone Star College-North

Cesar Chavez High School

Price Middle School

University of Central Florida

New River Community College

Grambling State University

Massachusetts Institute of Technology

Ossie Ware Mitchell Middle School

Ronald E McNair Discovery Academy

North Panola High School

Carver High School

Agape Christian Academy

Sparks Middle School

North Carolina A&T State University

Stephenson High School

Brashear High School

West Orange High School

Arapahoe High School

Edison High School

Liberty Technology Magnet High School

Hillhouse High School

Berrendo Middle School

Purdue University

South Carolina State University

Los Angeles Valley College

Charles F Brush High School

University of Southern California

Georgia Regents University

Academy of Knowledge Preschool

Benjamin Banneker High School

D H Conley High School

East English Village Preparatory Academy

Paine College

Georgia Gwinnett College

John F Kennedy High School

Seattle Pacific University

Reynolds High School

Indiana State University

Albemarle High School

Fern Creek Traditional High School

Langston Hughes High School

Marysville Pilchuck High School

Florida State University

Miami Carol City High School

Rogers State University

Rosemary Anderson High School

Wisconsin Lutheran High School

Frederick High School

Tenaya Middle School

Bethune-Cookman University

Pershing Elementary School

Wayne Community College

JB Martin Middle School

Southwestern Classical Academy

Savannah State University

Harrisburg High School

Umpqua Community College

Northern Arizona University

Texas Southern University

Tennessee State University

Winston-Salem State University

Mojave High School

Lawrence Central High School

Franklin High School

Muskegon Heights High School

Independence High School

Madison High School

Antigo High School

University of California-Los Angeles

Jeremiah Burke High School

Alpine High School

Townville Elementary School

Vigor High School

Linden McKinley STEM Academy

June Jordan High School for Equity

Union Middle School

Mueller Park Junior High School

West Liberty-Salem High School

University of Washington

King City High School

North Park Elementary School

North Lake College

Freeman High School

Mattoon High School

Rancho Tehama Elementary School

Aztec High School

Wake Forest University

Italy High School

NET Charter High School

Marshall County High School

Sal Castro Middle School

Marjory Stoneman Douglas High School

Great Mills High School

Central Michigan University

Huffman High School

Frederick Douglass High School

Forest High School

Highland High School

Dixon High School

Santa Fe High School

Noblesville West Middle School

University of North Carolina Charlotte

STEM School Highlands Ranch

Edgewood High School

Palm Beach Central High School

Providence Career & Technical Academy

Fairley High School (school bus)

Canyon Springs High School

Dennis Intermediate School

Florida International University

Central Elementary School

Cascade Middle School

Davidson High School

Prairie View A & M University

Altascocita High School

Central Academy of Excellence

Cleveland High School

Robert E Lee High School

Cheyenne South High School

Grambling State University

Blountsville Elementary School

Holmes County, Mississippi (school bus)

Prescott High School

College of the Mainland

Wynbrooke Elementary School

UNC Charlotte

Riverview Florida (school bus)

Second Chance High School

Carman-Ainsworth High School

Williwaw Elementary School

Monroe Clark Middle School

Central Catholic High School

Jeanette High School

Eastern Hills High School

DeAnza High School

Ridgway High School

Reginald F Lewis High School

Saugus High School

Pleasantville High School

Conniston Middle School

Waukesha South High School

Oshkosh High School

Catholic Academy of New Haven

Bellaire High School

North Crowley High School

McAuliffe Elementary School

South Oak Cliff High School

Texas A&M University-Commerce

Sonora High School

Western Illinois University

Oxford High School

Bridgewater University

Robb Elementary School

Michigan State University

Covenant Christian School

This list seems endless! The one thing each of these schools have in common is a child/young person with emotional problems or mental illness got a hold of weapons and did the unthinkable — killed other people — most of them other children or young adults.

I can tell you, as a former teacher, young people with emotional problems, mental illness, uncontrolled rage (which is a mental illness) or reactive behavior are not helped in schools. They are either lost in the shuffle or given an IEP (individualized education plan) and placed in a “general ed” class, possibly with 10 or more other students also with such issues, and 20 or more students who are frustrated with their inability to learn because these students are placed into regular ed classrooms that are not given the support and resources they need.

General ed teachers are overwhelmed by this — wouldn’t you be? They are teachers, surrounded by students with undiagnosed, underdiagnosed, or “accommodated” mental health issues, in overcrowded classrooms, with very little assistance, limited training, and no time for dealing with these students, and school counselors (if the school even has them) who may have a caseload of 500 students! Schools can’t be “everything” — or they are so busy trying to be everything that the majority fall between the cracks.

Something has to be done if this many children feel isolated and ostracized enough to become school annihilators. Something has to be done if so many children with emotional problems and mental illness are plopped into regular ed classrooms without the support and assistance they need. Something has to be done when school counselors have such huge caseloads that they can’t get to the students who really need them. And just putting more responsibility on schools, without providing the staff, infrastructure, resources, and funding they need to do anything about it is not the answer either.

I also have to say this — it is indecent that in our society that so many children and young people find access to guns, and guns with rapid-fire capabilities, and no one in their lives even notices!

It boggles my mind when I see a parent on the news who had no idea their 6-year-old child has been carrying around the parents’ legally purchased loaded gun to school, and that they shot a teacher with it. It boggles my mind that a high school student can get access to and store 4 or 5 rapid fire assault rifles, ammo, and protective vests, and no one in their family is even aware of it.

We have to step up as a society and realize the problem isn’t just guns. It isn’t just lack of mental health options. It isn’t just school overcrowding and mainstreaming that is not being done properly. It isn’t just parents who are not present in their child’s life, or those who do not actively parent at all. It isn’t just classrooms where the aggressive and emotionally reactive kids outnumber the “behavior-typical” students, or where classes are so overcrowded and counselors are so unavailable that students are bullied, feel unwanted, and want revenge, or feel they are a “nobody” with nothing to lose who think mass murder of other children is a great way to “prove” they are not “nothing.” It is such a combination of things. There is no one simple thing that will instantly fix this ongoing tragedy in American culture. We, as a nation, are failing our most vulnerable kids in so many areas. We are all looking for a quick fix, when this problem is systemic of so many overlapping and interlocking issues.

Hip dysplasia, and the inevitable total hip replacements that go along with hip dysplasia, cause some very unique issues, especially with self-care and comfort. Here are some items I personally recommended that can help make your life so much easier.

By means of full disclosure, I may earn a small commission from Amazon for links to any products or services from this website. I also want to add that, as a person with bilateral hip dysplasia, and having bilateral hip replacements for 25+ years, I have purchased and/or used each of the products I am recommending.

I was just sitting here, and I noticed the date on the calendar —  3/29/2023.  It was two years (and 2 days) ago that I underwent a procedure that confirmed I had cancer.  It was, technically, the beginning of my cancer journey. 

I had been sure of it several weeks earlier, in early February, when I unexpectedly started bleeding vaginally, almost 12 years after menopause.  The first words out of my mouth were “Oh my God, I have cancer!”  I don’t know what brought those words out of my mouth, but I knew, without a doubt, I had cancer. 

I only bled for one day.  Imagine if I had just ignored it. Imagine if I had just “waited to see.”   Imagine if I hadn’t followed up, even though my insurance company made it almost impossible for me to follow up.

I knew this was serious, and I was tenacious in following up.  I think a person less used to having to advocate for her medical rights would have given up simply because of all the ridiculous hoops the insurance company made me jump through. 

Because of my altered anatomy (my pelvis has been reconstructed, plated, bone grafted, and pinned over the years) the only way to do a pelvic exam (at this time of my life) to confirm the cancer was to do it surgically, under full anesthesia, in an OR with a special platform for people like me – with musculoskeletal deviations. 

I wanted to get an appointment with a well-known oncologist gynecologist, but the insurance company wouldn’t allow it.  They said I had to go to my PCP and have a pelvic exam done there.  I explained to them it wasn’t medically or physically  possible, but they would not relent.  So I waited a few weeks to get in to see my PCP, all the while knowing cancer was pulsing through my body. 

When I went to my PCP, I explained the issue of my pelvic reconstructions and the difficulty of doing a pelvic exam.  She looked at me (and I do mean “looked”) and said, ”I can’t possibly do a pelvic exam on you.  I don’t have the right equipment, and I don’t have experience with your disability”.  I said, “I know, but the insurance insisted I come here.”  

She documented that I needed a gynecologist with experience with people with musculoskeletal deviations.  Then, of course, the insurance insisted I go to a standard gynecologist.  They couldn’t get me in for 6 weeks.  I personally called all over town until I found a gynecologist who knew how to do a pelvic exam on me, had hospital privileges at the only local hospital that had the special platform, and he worked me in quickly, and my PCP helped me appeal the insurance company’s decision.

This male gynecologist had just recently gone into practice.  He knew a lot about gynecology.  He knew very little about cancer.  When he did the exam, he knew what he was seeing was very abnormal, that it was some kind of cancer, and that it was invasive.  He called me into his office when the pathology report came back.  He told me I had cancer, and he gave me a referral to the oncologist gynecologist I had wanted to see in the first place.

I went to see her.  Of course, she couldn’t do a pelvic exam in her office either, so she relied on the other gynecologist’s report.  When she read it, she said, “This doesn’t seem too bad.  It looks like you just have endometrial thickening.”  I stopped her and said, “I don’t know what that report says, but I saw the look on that doctor’s face when he told me I had cancer.”

My oncologist gynecologist was a very smart woman, and she said “The best way for me to figure out what’s going in is to just call him directly.”  And she did, right there in the exam room.  He explained to her, in detail, what he had seen (which wasn’t clear in his report at all.)  When she hung up, she said, okay we need to get a PET scan on you, and then we’ll plan the next step.  I was relieved.

Guess what?  The insurance company wouldn’t approve the PET scan.  They said I had to have an MRI.  I tried explaining to them that an MRI would be of no use, since I have 9 ½ pounds of surgical metal in my pelvis.  They still insisted.  (Obviously, the metal streaks, blurs,  and physically blocking a huge section of my reproductive organs would make it unusable.) 

I asked my oncologist gynecologist to appeal the insurance’s decision, but she explained to me that they could tie up the appeal for up to 4 weeks, and that was not what we wanted to happen.  She said to go ahead and do the MRI, and when it came back as unusable, she could get the PET scan approved very quickly.  She said it would be quicker this way, so I had the MRI and exposed myself to unnecessary contrast, which is incredibly hard on my kidneys (I also have CKD.) 

Of course, all the metal in my pelvis and well as bone in strange places, made the MRI unusable and caused an issue we didn’t realize yet.  The MRI said my tumor was 1.4 cm.  The PET scan said it was 2.4 cm.  Based on this information, my oncologist gynecologist recommended a radical hysterectomy and removal of my pelvic lymph nodes for testing. 

I agreed.  This sounded reasonable.  A small 2.4 cm tumor is very operable.  If only we had known how wrong we were!

My bladder was prolapsed, so the surgeon (my oncologist gynecologist) removed it from its attachments, and moved it over, out of the way, and pinned it into place.  When she removed my uterus, she was shocked to see that tumor was tightly packed and over 4 cms, which technically means it was “inoperable.”  She had great difficulty even finding my pelvic lymph nodes (they were located so much deeper in the pelvis was typical, and 5 of the 11 she removed were not even functional.  (They remove the lymph nodes to send them to pathology to see if they have cancer spreading through your lymphatic system.)

I was in the hospital for 10 days, and my surgeon came to visit me every day.  Then I was sent to a nursing home for 4 weeks (I signed myself out against medical advice after two weeks, because the care was so poor.)  It was during my 2^nd week in the nursing home I was “called in” to my surgeon’s office.  The nursing home arranged a handivan to transport me.  This is when my oncologist gynecologist told me that the tumor was more than twice the size that the imaging had indicated and that I was going to need very aggressive chemo and radiation, followed by brachytherapy. 

I did ask her why she didn’t tell me any of this when she was visiting me in the hospital.  She simply said, “I wasn’t sure you could take it then. You were so weak, and you were completely alone.”   I think she was probably right.  She said I needed about another 4 weeks to heal from the radical hysterectomy (it was an open incision, so recovery was fairly long) 

So, then I started the second part of my journey – 45 sessions of radiation, 6 weeks of chemo, and two weeks of brachytherapy (which is internal radiation and  was incredibly difficult because of my anatomy.) 

All of this started — my cancer journey — two years and two days ago.  I never thought that two years later, I’d still be recovering from the damage done by radiation and chemo. 

Who knew two years and two days ago that I’d lose eleven lymph nodes, my ovaries, my fallopian tubes, my uterus, 2/3s of my vagina, 3 feet of my small intestine, several bowel loops, my cecum, my appendix, part of my ascending colon, and finally, my gallbladder?  Who knew my sigmoid colon would be damaged to the point it could not be repaired, that my rectum would be damaged, and that I’d suffer an anal fissure and internal hemorrhoids?.  Or that I’d contract a serious recurrent colon infection, constant B12, and vitamin D deficiencies, frequent malnutrition due to my remaining intestine’s inability to absorb vitamins and nutrients, and bile acid malabsorption? 

Lastly, who knew I would end up with dietary limitations which meant eating only low fiber, low fat, low residue, bland foods to almost the exclusion of almost all vegetables, fruit, all whole grains, seeds, nuts, beans, and dairy? But here I am – alive, and well, and waking up to sunshine almost every day!  Who knew?

You may already know my story, but for those who don’t, I’ll recap the basics and tell you the latest developments. 

I couldn’t keep food down, I had near-constant diarrhea and would simultaneously vomit bile because I had bowel obstruction after bowel obstruction where the intestine was burned and the tissue scarred and twisted.  They put me on hospice and said my condition was “incompatible with life.” 

I made my end-of-life plans, wrote my will and had it notarized and witnessed, double-checked my beneficiaries, planned my funeral and cremation (and paid for it), and even wrote my own obituary.  I posted my DNR order and registered it with the local hospitals.  I assigned a medical power of attorney and a financial power of attorney and chose my executor.  I put my affairs in order and even found a retired couple who agreed to adopt my elderly dog when I passed so I wouldn’t worry about what would happen to her once I was gone.  (They also cared for her every time I was in the hospital or when I was too weak from radiation and chemo.) 

Long story, short, after 12 weeks in and out of the hospital with basically nothing passing through my bowels, I was so weak, and I literally had only days left.  The surgeon the hospital had assigned to me said it was hopeless – that I was far too weak and too deconditioned to survive any attempt at surgery. 

He even stopped coming to see me.  I didn’t see him once during the last 8 days, no matter how many times I asked for him.  I knew the end was near.  I could barely lift my head off the pillow.  Physical therapy didn’t even bother to come anymore, because I was too weak and deconditioned to even stand on my own.  I had a PICC line put in, and since I hadn’t been able to keep any food down for months, they hooked me up to TPN, which is when they pump nutrients and electrolytes directly into your bloodstream. 

There was the added complication that a colostomy bag was out of the question.  You see, I have severe arthritis and enthesitis in my hands and wrists, and it wouldn’t be possible for me to open or empty a colostomy bag.  If I had one, it would have meant spending the rest of my life in a nursing home or care facility.  I was in my fifties, had been fiercely independent all my life, and honestly, I would rather die than spend the rest of my life with a colostomy bag I couldn’t care for and living in the never-world of a care facility decades before my time. 

Somehow, as weak as I was, I found the strength to realize I had no confidence in the doctor the hospital had assigned to me.  He had long since given up on me.  There was no compassion from him.  There was no hope.

I felt my body shutting down, but I just wasn’t willing to let go yet.  I was very confused by it all.  I didn’t know if I should pray to die or try to live.  One second, I’d hold on to life with everything inside me, and the next, I was ready to let go.   I was overwhelmed by it all.  As weak as I was, I still had just a sliver of “fight” left in me.   

It took every ounce of strength I had, but I picked up the hospital phone and told the operator I wanted a patient advocate, and I didn’t have time to wait.  I needed an advocate now. 

The patient advocate listened to my concerns and agreed that I had a right to feel that my needs were not being adequately addressed by my doctor.  She explained the process to fire that doctor from my case.  With what seemed like my last ounce of strength, I fired him.  I barely had the strength or state of mind to go through the process, but somehow, I did it.  For some reason I have never understood, God and the universe have always looked out for me. 

I asked for a surgeon I had seen earlier in my enteritis battle.  He came immediately to the hospital, and said he knew he couldn’t “fix me,” but he was willing to go in surgically, do an exploratory, and if he saw any way to improve things for me, he would do it.  He promised me that there would be no permanent colostomy.  He scheduled my exploratory for 8am the next morning.  He gave me hope.

He was very upfront that it was a high-risk surgery and that there was a good chance I might not survive it.  He said he’d do his best for me.  I prayed that night that he was successful, but that if the life I would have wasn’t worth living, that God would keep me from waking from the surgery.  I chose to trust, both the doctor and the universe.

I made a good choice.

I woke up from the surgery to find he had removed over 3 feet of my intestine, including my ileum (and terminal ileum,) my cecum, and about half of my ascending colon.  He explained that he didn’t try to repair my sigmoid colon because he doubted he could make it better, and he was concerned he might make it worse. 

I felt better when I awoke from surgery than I had felt in over eight months.  Even with the three new incisions, my pain was so greatly reduced.  I spent ten more days in the hospital and then went home, and spent the next six months recovering from the surgery, and learning to live with my “new normal.”  I understood my eating and bathroom habits would never be the same, but at least I could eat some things and I didn’t have a colostomy bag I couldn’t open or empty. 

What I did have was a constant battle with bile acid malabsorption.  In case you don’t know, when you no longer have a terminal ileum or a cecum, your intestines get overloaded with bile that can’t reabsorb into your body and return to your liver.  Your body, realizing you have too much bile, tries to push it out of your intestines by flooding them with water.  It causes you to anally expel huge quantities of watery diarrhea and the mucous lining of your colon, often up to 20 plus times per day. 

The loss of all this fluid also leaves you dehydrated no matter how much water you drink, causing frequent trips to the ER to have your labs and electrolytes determined, and have several bags of fluids administered.  It leaves you with fecal urgency and often, fecal incontinence.  The explosive watery stool you expel is so watery that it immediately soaks through pads and incontinence briefs, leaving a horrifying mess multiple times per day, and per night.  This constant flooding with watery stool also leads to frequent UTIs, no matter how often you shower and change your clothes. 

To help reduce this, you can take a bile acid sequestrant. It is a resin powder you mix with juice and drink, in my case, twice to three times per day.  This mix is thick, grainy, and gritty, and you have to use bleach on the drain in your kitchen sink weekly or the resin will coat and clog the pipes, and the sticky sweetness will attract drain flies and fruit flies.  

Without the ileum (a section of your small intestine) you can’t absorb certain vitamins, no matter how much of an oral supplement you take.  It just passes through you without being absorbed.  I’ve had constant B12 and D deficiencies, which left me weak, fatigued, and low on energy. Biweekly B12 injections and weekly vitamin D sublingual gels, along with large quantities of vitamin K, E, and O supplements, and a good multivitamin are helping to prevent ongoing malnutrition. 

Not only do I have a difficult time absorbing many vitamins, but my food choices are also extremely limited.   The list of foods I cannot eat is 14 pages long.  The list of things I can eat is a single page of bland, low-fat, low-fiber, and low-residual foods.  For many foods, the only way I can find out if I can tolerate them is by trial and error.  The error part can be very painful, to say the least. 

Things like dairy products (including sour cream, cream cheese, milk, ice cream, and yogurt,) whole grains, beans and legumes, seeds, nuts, greens, raw vegetables, baked goods (like cakes, croissants, and sweets,) cream soups, popcorn, rich sauces, tomato-based products, processed meats, fatty foods, fruits with skins or husks, anything with high fructose corn syrup, spicy foods, vegetable oil, butter, margarine, and cruciferous vegetables, are all on the “never eat” list.  My digestive system simply can’t process these things.  Even the few vegetables that are left have to be cooked until they are soft and mushy.  (This “diet” makes it hard to avoid malnutrition.) 

After months of living basically on Rice Krispies, scrambled eggs, plain untoasted English muffins, poached skinless chicken breast, and unsweetened applesauce, my condition ebbed and flowed, but left me basically medically homebound.  After about eight months, it seemed to get much worse, but I had no idea why.

I had recurring Enterococcus faecalis (E. faecalis) and Escherichia coli (E. coli) UTIs and infections.  Just to add to the “fun,” I got a call from the lab that I had a very serious colon infection called C. Diff that is contagious through contact and can be deadly.  They immediately started me on a course of very specific antibiotics.  This infection can be easily spread, so I had to be very careful and avoid physical contact with others.  I had my home thoroughly cleaned with bleach to help as well and had to clean my bathrooms at home with a special bleach cleaner at least twice a day.

This infection, the partially clogged bile duct, and abdominal inflammation, all added to my worsening diarrhea and fecal incontinence no matter what meds I took or how careful I was with my diet.  Nothing seemed to help.  After a while, I just learned to live with it.  I stayed at home, and my world became very small.

Then I started having unexplained pain in my abdomen and lower back that would leap from just barely bothering me to 10 out of 10 on the pain scale.  I’d have seriously low blood pressure and almost pass out, and then as the pain spiked, my blood pressure spiked to over 180/100, which required me to take Clonidine to level it off. 

Eventually, CT scans and ultrasounds named the culprit.  It was a medical term I had never heard – “gallbladder sludge.”  It was most likely also caused by my cancer radiation treatments, and this sludge was causing my bile duct to be partially blocked, and my gallbladder itself to be distended and spasming. 

Believe it or not, the ER sent me home with an anti-spasmodic medicine and didn’t even recommend follow-up of any kind.  I casually mentioned this to my rheumatologist at my next appointment, and she was shocked they hadn’t sent me to a specialist. 

She gave me a very good piece of advice.  She told me, “If your abdominal pain goes up and you spike a fever, call an ambulance and get straight to the hospital.  Don’t hesitate.  Have them remove your gallbladder.  It’s going to have to go, so do it sooner rather than later.” 

A week later, that is exactly what happened. Abdominal pain, lower back pain, pain by my right shoulder blade (all classic signs of gallbladder pain) and a 102.5 fever.  I called.  I went.  She was so right!

This was the same hospital where my life-saving surgery had taken place ten months earlier.  When I got to the ER, I asked the head ER nurse if the doctor who did my previous surgery was on-call.  They told me he was off that weekend (it was a Friday morning.)  They told me the name of the surgeon on-call, and at least it wasn’t the doctor I had fired before.  I wasn’t happy about it, but I resolved to let a doctor I didn’t know remove my gallbladder.

In one of life’s unusual twists, the head ER nurse popped his head into my room a few minutes later.  He said, “I texted the surgeon you wanted, and he said that for you, he would come in on his weekend off.”  And that is exactly what happened.  He came in later that morning and removed my gallbladder the next morning.  The relief I felt when I found out he was going to be my surgeon again is beyond words. 

After the surgery, he told me it was a good thing I had my gallbladder removed, that it really needed to come out.  It was inflamed, distended, and infected.  I stayed a total of four days in the hospital.  I came home and spent about two weeks taking it easy and recovering from the surgery. 

The strangest thing happened during my recovery.  The horrendous bile acid diarrhea slowed down, and then almost stopped.  Days have gone by, and now that I no longer have a gallbladder to flood my intestines with bile, I started to have fewer bowel issues.  (After your gallbladder is removed, the bile just sort of drips a little at a time in smaller amounts throughout the day.)  

I’ve finished my course of antibiotics, so my C. Diff infection has resolved.  I’m not having such horrendous bile acid malabsorption.  I’m staying hydrated.   I’m almost afraid to mention how much better I feel because I’m afraid I will jinx things, and it will go back to the way it was. 

Sometimes, you don’t even realize how sick you are until you are halfway recovered.  It feels like this is what has happened to me.  Without the constant bile acid malabsorption, I’m not constantly fighting dehydration, my skin has stopped looking like crepe paper, and I’ve stopped losing layers of skin at the tiniest bump or scrap to my arms. 

I’m only two weeks out of my gallbladder surgery, so who knows how this story will end?  I’m glad to say I will be here to find out. 

I realized a few days ago that I’ve become depressed since my gallbladder surgery. (I’ve fought depression my entire life, though not many outside my immediate friend group would know that.) When I’m depressed, I just quietly sit and stare, and my life and heart feel very “blank.”

I had my emergency surgery, everything went well, I came home, and I’ve been recovering well, so I have no reason to be depressed, but sometimes, when I’m alone for any length of time, and recovering keeps me tired and uninspired, I find myself drawn into a very blank, empty state of mind that I have a hard time putting into words.

I’ve tried to push through this for the past three days now, but instead, I’ve just been sitting here, staring aimlessly, and wondering why I feel this way. Sometimes, the best way to push through it is to “fake it ’til you make it.”

So finally, around 3pm today, I said to myself, “Enough!” I took a long, hot shower, washed and dried my hair, put on clean clothes (instead of staying in my nightgown all day) and went for a fairly long walk with my upright rollator. It’s 77 degrees, sunny, and bright here today, and I let the sun and its warmth surround me.

I felt the sun surround me, and before I knew it, I was smiling and feeling good. Never underestimate “faking it until you make it.” Sometimes, your soul is begging to be happy, but you just can’t find the way to start. That fake smile turns into pure joy before you even realize it.

I have lived in the Gulf Coast of Florida for 3 ½ years now, and yet, I have not seen a single beach here.  I spent 28 years living in Virginia, a stone’s throw from Virginia Beach and Ocean View. Seven years prior to that, I lived near Buckroe Beach and Grandview.   I started thinking about it today.  The last time I recall walking on a beach was in 2005, when I met my parents at Myrtle Beach, SC for a week’s vacation. 

You see, I can’t walk across soft sand without assistance, and I’ve had that problem since I was in my early thirties.  Back in 2005, my dad was at Myrtle Beach with me, and he knew just how to help me traverse the powdery sand.  I could walk by myself on the hard, wet sand at the water’s edge, and feel the water and grainy mixture of sand, shells, and water engulf my toes.   

My parents went for a walk down the beach, while I stood on the firm, wet sand, watching the sunrise and the gentle waves bank, ebb, and flow.  At one point, they turned toward me from down the beach, and my dad waved at me.  I snapped a picture, and in my head, I thought to myself, it’s as if they are leaving me and saying goodbye for the last time.  To this day, I have that photo, and it brings tears to my eyes because they are both gone now.  I still imagine them walking away forever, and when no one is watching, I wave back at them.

And so, it has been 18 years since I have walked on a beach – any beach.  I long to go and spend just a short while, splashing my feet at the edge of the waves. 

I’m very good at thinking of ways to do things.  I know they have beach wheelchairs, but that is not as simple a solution as you may think. 

First of all, you have to have someone to push that chair.  Second, you have to be able to find a parking place close enough to pick up that chair.  Last of all, you have to be able to get the chair back to where you got it, and get back to the car.  None of these are easy things in Florida, where the parking lots are always full of tourists, most everyone has a handicapped placard, and where I’ve become quite intolerant of direct sun. 

They even have motorized sand wheelchairs over on Anna Marie Island.  However, they only rent those by the week or the day (not by the hour) so it would cost almost $200 for that pleasure, and it still has all the parking and returning issues.  They assume you are renting a beach house, so those are the only places they deliver to and pick-up from.  Beach houses are, of course, only rented by the week or month.

Even without a sand wheelchair, if I had someone able to help me walk on the sand, I could probably still do it.  But that would also mean bringing a folding chair (a very specific one that is high enough for me, because I can’t sit on the ground or the sand and get up safely.)  Once I got there, I wouldn’t have the strength or the tolerance for the sun to stay too long.  And I don’t, stupidly, think the world revolves around me.  It would be quite an expedition to make this happen, with anyone who helped me finding little or no pleasure in the journey.  So instead, I look at the two photos I took the very last time – back in 2005 – one of the foamy water rushing forward, and the other of my parents turning and waving goodbye as they walked away. 

I spent so much of my life struggling to live independently and to rely only upon myself, while simultaneously distancing myself from things I loved because they forced me to be dependent.  With each thing you can no longer do, your world becomes smaller and smaller. While walking on a beach, or swimming in the ocean, lake, or gulf, are distant memories to me now, they are so close that they call my name even when I squeeze my eyes tightly closed, and try to think of mountains, or boats, or bicycles whizzing down a steep hill.  Somehow, it all becomes the sun rising, or setting, across a darkened sea.  And suddenly, I am washed-away, to where the horizon lies.

As children, we are told we can achieve any goal if we just try hard enough and don’t give up. Television commercials tell us this. Motivational speakers tell us this. Often, our own parents tell us this. The harsh reality is that, sometimes, we choose goals and paths that are beyond our physical, emotional, financial, or intellectual abilities. We all have limitations, whether or not we choose to acknowledge them.

The reality is there are many goals we can choose from, many ambitions we can follow, many careers to choose from, so the thought that each of us has only one path to follow is erroneous. There are thousands of things in our universe that can make us feel valuable, worthy, needed, and successful.

By learning to adapt to life’s inevitable upheavals, we can start to embrace life’s limitations, make life choices that will fulfill our reasonable dreams and expectations, and stop worrying about who other people think we should be. Resilience, flexibility, and adaptability are the traits that lead us to a happy and fulfilling life.

In November 2022, I fulfilled my lifelong ambition of writing a book. I have been piecing together the parts of my story for the past two years through my online blog http://www.janmariet.com along with at least 100 pages of new material. I hope you will enjoy reading part of my life remembrances and responses in “Embracing Life’s Limitations: Letting Go of Who You Were Supposed to Be.”

While my book is still very new to the market, it already has 5-star reviews on both Amazon and Goodreads.com. I’d like to share a couple of the reviews with you.

I hope you decide to share my life story. There’s so much more to tell!

I have exciting news! My book, “Embracing Life’s Limitations: Letting Go of Who You Were Supposed to Be” is available on Amazon.

You can follow this link to find it. https://www.amazon.com/Embracing-Lifes-Limitations-Letting-Supposed-ebook/dp/B0BL94PHJH/?_encoding=UTF8&pd_rd_w=CxvDY&content-id=amzn1.sym.f05f10a7-d30f-4cc9-9521-a1dfe37686ab&pf_rd_p=f05f10a7-d30f-4cc9-9521-a1dfe37686ab&pf_rd_r=JAYN9H244QZ1E8ANGSX9&pd_rd_wg=f9bPx&pd_rd_r=48106e0e-ef73-4d69-9675-08ae089a9c21&ref_=pd_gw_ci_mcx_mi

I hope you’ll take a look. Best wishes!

I came across this quote today. “Speak to people in a way that if they died the next day you’d be satisfied with the last thing you said to them.” It brought to mind a memory from the 1990s, when I was a Girl Scout leader.

We met in the evening (which was a very unusual time for a scout meeting but met our schedules very well.) We met in a church in a very bad part of town, just past the very nice historic district where I lived. The church hired the custodian to stay and watch the cars (so they didn’t get broken into) and to make sure we were safe, coming and going from the building. It was very kind of them to do that for us.

From day one, I told parents, don’t be late picking up your child. If you can’t come, arrange with one of the other parents to pick up your child. If you come late and the windows are dark, and the doors are locked up, you can be assured your child is safe and with me…wherever it is I was going.

This was before cell phones, and you couldn’t call into the church at night (although we could make outgoing calls, it was tricky to do so; we had to make them from the emergency phone in the elevator.) So, I told parents, if you are late, your child will be safe, but you’ll need track me down. I may be at the grocery. I may be at the drug store. I may be at a restaurant eating my dinner. I worked really long hours and sitting waiting for half an hour or more was not something I was willing to do. I set a very firm boundary about this.

My troop parents were excellent about accepting my boundary. I didn’t want to be left alone with one child in an unsafe neighborhood at night. I had things I needed to do before bedtime. If I didn’t do them after the meeting, they didn’t get done.

One of the girls in my troop was being raised by her grandfather. After a meeting one night, he wasn’t there to pick her up. He was always the first one there. He didn’t send anyone to pick her up, and he didn’t ask any of the parents to drop her off at his house. I called the house, but no one answered. The answering machine came on, but I didn’t leave a message.

I was a bit worried, but I was more angry. I ended up doing what I promised I wasn’t going to do. The custodian was ready to leave, and I wasn’t willing to stay there by myself with one child, in a dark church in a very unsafe neighborhood.

I started to go to the emergency phone in the elevator and call and leave an angry message on his answering machine. “How dare you not show-up and leave me in such a predicament. Why didn’t you get another parent to pick up your child if you were going to be late?” I thought about it, but I didn’t leave that message.

Thank goodness, I didn’t make that call or leave that message.

I finally decided to drive the girl to her grandfather’s house, which was on the way to my house, just to see if his car was there. I decided if he wasn’t there, I was going to drop the girl off at my assistant leader’s house (she had two children in the same age group, and they were in the same group of friends. Because I was a single person living alone, taking a child to my home was just not a great idea.)

I drove to the grandfather’s house, and saw his car in the driveway. I pulled up behind it. There were lights on inside. At first, that made me angry, thinking he had just neglected to come get his granddaughter. How inconsiderate, I thought.

The girl started to get out to run up to the door, but I got the strangest feeling, and I told her to stay put. It was then I noticed the front door was slightly ajar. I told her to stay in the car and lock the doors.

I slowly and quietly crept up to the slightly open door and peeked in. Then I swung the door open as I realized the grandfather was laying on the floor just inside, gasping for air, and clutching at his chest. He had been on his way to the car when he had a heart attack!

Long story short, I called 9-1-1, he went to the hospital in an ambulance, while I followed with the granddaughter. A relative was called to get the girl from the hospital. The grandfather recovered, and, in the end, all was well.

But just imagine if I had left that angry message on his answering machine. I often wonder what stopped me from doing just that.

How awful I would have felt knowing my last words to him would have been angry accusatory ones. (Remember that back then, answering machines recorded the message aloud – everyone in the room could hear the message as it was left. He would have heard it, while laying there having a heart attack.) Those could have been the last words he ever heard.

Imagine if I hadn’t broken my cardinal rule of taking kids with me wherever I was going if the parent was late, and drove to his house instead. If I hadn’t, he probably would have died on that living room floor while I did my grocery shopping for the week or ran by the drugstore.

I sometimes think God and the universe whispers to us. Sometimes we hear words, but mostly, we feel a strange disquieting feeling. We just instinctively know there is something we are supposed to do, or something we are not supposed to do.

It often takes time for us to figure out what that something is. The hard part is following those whispers, even when we aren’t exactly sure what they are saying to us.

The part that is even harder yet, is never leaving harsh or angry words between us, because we never know when those words will be last that one or the other will ever speak.

When I was growing up, my parents taught me that I could do anything, be anything, if only I wanted it bad enough, worked hard, and never gave up. These are the lies my parents told me.

It was a hard reality when I was a young adult, and faced the truth – that what I had been taught as a child wasn’t true at all. It took me a long time to realize that it wasn’t my lack of trying, or working, of believing – it was having unrealistic expectations of life that were my greatest downfall, and my ultimate victory.

I had a great “work ethic” – I didn’t mind working 80 hours a week (at no additional pay) or earning advanced graduate degrees and certifications while working full time and having a second job. I had a professor in college who had a sign in his office. It said, “Hard work makes happy people.” I remember reading it, and saying to myself, “I’m going to be very happy, then.”

I had many jobs I liked, and many jobs I loved. I watched and struggled as each one became beyond my physical means. I was born with a disability, although we never called it that when I was a child. I had “a hip problem, and the doctors had fixed it when I was a little girl.” That was another lie my parents told me.

I was in college before I even knew that my “condition” had a name – severe bilateral congenital hip dysplasia, with complete unilateral dislocation. I was in college when I learned that I could never have children. I had just finished college when I learned that my childhood repairs would not last much longer. My mother, who I loved very much, could not bring herself to tell me these things, although she had been told these things when I was still quite young. I learned them after I was 18 and went to my first orthopedic appointment by myself. The surgeon who blurted out the part about not having children assumed I had been told long ago, but I hadn’t ever been told. He started talking about the bone spurs I had been developing, the need to go in and surgical remove some of them that were causing me pain, and how I needed to start on steroid therapy immediately so I could tolerate the pain until I was a bit older, since hip replacements (at that time) only had a life expectancy of about 10 years. To say I was stunned by this news is quite an understatement.

The doctors had “fixed me” through a series of 12 childhood surgeries, that broke my pelvis and restructured it, broke my femurs and adjust the angles, cut notches into my restructured pelvis so I had some semblance of hip sockets, and reshaped my acetabulums and misshaped femoral heads. My first surgery was when I was 18 months old. From that time, until I was 4 and half, I had to wear body casts after each surgery and retrieval procedure. When I wasn’t in a body cast, I had to wear a position brace. I could not walk or use the bathroom in either of these devices. Can you imagine being a toddler trapped in body cast after body cast? But those 12 surgeries gave me the ability to walk. It was a miracle. In my mind, I was “fixed.” If only that had turned out to be true.

What I never knew was that this “fix” would not last my whole life, and that in my early 20s, the wear-and-tear of walking as a child and teen would wear-away every part of my childhood “repairs.” I had no idea how many more surgeries were in my future, or how long each recovery would be.

Being in your mid-twenties and needing bilateral hip replacements was not an easy place to be. I had my first replacement in my late twenties, which simply wasn’t done back then. My second total hip replacement was in my thirties, after suffering an AVN which cut off the blood supply to my left hip and pelvis, causing the bone there to die and crumble away. It required bone harvesting from another part of my body, multiple bone grafts, a modular hip replacement, and months of recovery time and physical therapy. The incision for that surgery was 16 inches long!

I worked so hard throughout my life, but my lifestyle never reflected that hard work. I always had inexpensive compact cars, and I kept my cars for 15 years or so, until the engines finally just gave way. I had to give up the jobs, and careers, I loved so much, because I simply became physically unable to do them anymore. As my body declined, I simply couldn’t do the work anymore, and each time this happened, it felt like a defeat – like a failure on my part. I have to tell you, this crushed me.

But each time, I found a way to get through it, a way to survive it, and found something else I could do with my decreased physical abilities, and most importantly, I found a way to love my new job or circumstance. I had so much joy, despite my circumstances.

My medical expenses over my adult years almost bankrupted me several times, and left me without savings for fun things, like vacations, going to the theater, to concerts, to sporting events, out with my friends, or virtually to anything fun. I never had enough money to pay for my adult surgeries, x-rays, injections, physical and occupational therapy, my medications, my ongoing doctors’ appointments, etc. Before the ACA (the Affordable Care Act,) every time I changed jobs, my disability was considered a “pre-existing condition” and wasn’t covered by health insurance for the first year. My second hip replacement happened while in one of these “pre-existing condition” periods, which meant I had to pay everything myself.

That hip replacement (which included multiple bone grafts and bone harvesting) left me no choice but to sell my home to pay for my surgery and rehab expenses. This meant, when I finished recovering, I would be homeless, unemployed, and once again, without insurance.

Thank goodness a family member stepped in and purchased my house from me, and then let me live there rent-free for a year while I retrained for a new, less physically demanding career. Once I started working full-time again, I paid back every penny for that “free rent” and I made the mortgage payments on the house until I had bought it back completely. It took me 11 years to recover from that surgery financially, but I paid every penny I owed.

I have always taken great pride in the fact that I have never left a debt unpaid. By doing this, though, I lived paycheck-to-paycheck, and did without so many things. I always repeated my grandmother’s words “if you don’t have cash for it, you don’t really need it.” so many times, as I walked away from something I really wanted, but couldn’t afford. Her depression-era advice helped me to avoid debt, other than medical debt.

My money always had to go for some medical issue that wasn’t covered by insurance, or for co-pays, or for out-of-pocket, or for self-paying my own insurance premiums. It went for physical therapy, and leg braces, and rollators, and walkers, and crutches, and $8,000 annual out-of-pocket I had to pay before my health insurance even kicked in each year.

In my twenties, I worked as a therapeutic recreation instructor and martial arts teacher (I’m a 3rd degree black belt in Aikido.) I also taught women’s weightlifting, self-defense, and wheelchair weightlifting. When I was 24, that came to a crashing halt as my physical condition deteriorated, and I was unable to do these things anymore.

I got my master’s degree in education and recreation, and became a recreation specialist at a rec center. I moved up quickly to a recreation supervisor, and then a recreation superintendent. But then my right hip failed. I was out for 16 weeks having it repaired and recovering. (I had enough leave time accumulated to cover the entire 16 week absence, and even found someone who was willing to do my job while I was gone.)

About a month after I came back to work full time, my boss called me into his office and said “You no longer have the physical stamina to do this job. You can’t walk long distances, you struggle with stairs to the stage at festivals, and you can’t do multiday festival work anymore. It is your choice, you can either quit today, or we will fire you tomorrow.” (This was before ADA or FMLA, so there was nothing I could do about it.)

Sadly, this ended my twelve-year career in recreation. Physically and financially, things got much worse before they got better. After my second hip replacement surgery (which required bone harvesting and multiple bone grafts) I decided to go back to school and become an elementary teacher. It only took me two semesters to complete these classes, and then one more semester to student teach.

I worked as a teacher for 20 years, but my physical condition continued to decline, until I had to give up teaching as well. I struggled with the physicality of it for years before I had to give it up completely. Again, I blamed myself because my body was failing.

Now, after losing my mobility, battling cancer for a year and a half (surgery, radiation, chemotherapy, and brachytherapy), I also lost one third of my intestines because they were so damaged by radiation they were no longer functional. When you lose this much of your intestines, you will never have regular bathroom habits, and you can never eat normally again. To say the past 3 years have been difficult is an understatement.

I also have to take a medicine twice a day which costs more than my entire monthly early retirement payment. (I cannot survive without this medicine, and there is no assistance program that covers it.) My disability check isn’t even enough for my basic expenses (housing, food, heat and air conditioning, car insurance, internet, taxes, etc.) I also have to pay for house cleaning and yard work that I am not physically able to do. I watch each day as I have to pull money out of the small investments that were supposed to take care of me in my old age, just to pay for basic expenses and medication. Knowing I will not ever be able to work again leaves me very concerned for my future, but I try not to think about it too much, simply because it will overwhelm me if I do.

I’m also on immunotherapy, which costs over $52,000 per year. Fortunately, I was able to find a medical foundation that covers most of this expense, as Medicare doesn’t cover any of it, and without it, I am completely immobile and homebound, and in incredible pain. Immunotherapy has been life-changing for me.

So I have learned in my adult life that what my parents taught me was not true. (I’m sure they believed it was, but that doesn’t change reality.) I worked hard. I gave it my all. I paid my debts, didn’t buy things I couldn’t afford, and didn’t waste money on vacations, movies, concerts, or nights out with friends.

My spirit has been so close to broken many times, but I’ve always bounced back. I’ve always adjusted and found another way to get by. And throughout it all, I’ve found great joy in everyday life.

I don’t want you to think that even in this financial crisis, that I am hopeless. I have had so many miracles in my life, how can I not rejoice in that? I have survived countless surgeries, psoriatic arthritis, ankylosing spondylitis, a battle with cancer, loss of a large part of my intestines/colon, loss of my mobility, and being medically homebound for the past three years.

I have even come to terms with my latest diagnosis, Myotonic Dystrophy type 2 (DM2), which is genetic disorder that causes proximal muscle weakness around the shoulders and pelvis or a “limb-girdle weakness.” This form of adult-onset muscular dystrophy started when I was around 38 years old, but wasn’t actually diagnosed until earlier this year, when my GI surgeon noticed my symptoms, and had genetic testing done. For 20 years, my doctors had said my increasing weakness, stiffness, and declining mobility was caused by my congenital disability. They never even looked for another cause. It turns out, it had nothing to do with hip dysplasia or my autoimmune disease.

The clinical onset of Myotonic Dystrophy type 2 is in a person’s third or fourth decade of life (which is exactly when it happened to me,) and leads to weakness that typically affects proximal muscles around the shoulders and pelvis causing problems with climbing stairs, brushing and drying hair as well as getting out of a chair. I present with all of these symptoms, as well as the genetic marker. It explains why my mother, who also had bilateral congenital hip dysplasia, was so much more able-bodied throughout her life than I was.

I used to think I could be anything I wanted, I could fix any problem, I could achieve any goal, if I just tried hard enough and didn’t give up. Reality is much different. So many times, your spirit is willing, but your body just can’t do it. I struggled with this for most of my adult life – feeling like a failure because I couldn’t achieve it, no matter how much I tried. I’m here today to tell you that it wasn’t because I didn’t try hard enough, didn’t work hard enough, didn’t believe hard enough. I blamed myself for most of my adult life for a failure I had no control over.

To end my story, I’m going to tell you something a wonderful professor (and dear friend) told me when I was in my late twenties. He said “In the universe, there are a million things you can do, and a million things you can’t do. And in your entire life, there is only time to do a thousand or so things. You can spend your life mourning what you can’t do or enjoying what you can do. The choice is entirely up to you.”

Thank you to my friend and mentor, (the late) Dr. Charles Smith, for those amazing words of wisdom, that have gotten me through the past 40 years of challenges and joy. I wonder if he ever knew how life changing his words were. I truly hope he did.

I do try to enjoy what I can do, and not focus on what I can’t do. Sometimes, that is harder than other times, but I’ve gotten pretty good at it over the years. Life is full of joy, if you just know where to look, and to ignore the (well intentioned) lies our parents told us.

It’s hard to believe this photo was taken just one year ago today! It seems like a lifetime ago. My battle with cancer started in February 2021. I had my radical hysterectomy on May 3rd, 2021, and in this picture, I was about 6 weeks past my radical hysterectomy and had just started Chemo and Radiation. When the first clump of hair fell out, I made up my mind — no tears, just smiles, and I was going to lose my hair on my own terms. I went to my hairdresser, and had my hair shaved down. This way, when it continued to fall out, it was just bristles that lined my sink and shower, not huge clumps of hair.

I made up my mind, there and then, no tears, just smiles. Every single photo I took after that, whether I was hooked up to chemo, coming out of radiation, or wearing my head covers, all anyone was going to see was a smile. You know that saying — “fake it ’til you make it!” But I didn’t have to fake it too long. The smiles and the happiness came back into my life, even through some very dark times.

I think I have my mother’s stubbornness when it comes to things like this. Even when cancer was taking her life, all anyone else saw was smiles — except her inner-sanctum (my Dad and I.) We saw the pain, the tears, and the frustration. All anyone else saw was smiles. I think I was the same way. There were only three or four people (my inner-sanctum) who ever saw anything but the smiles.

The smiles in all of these pictures are genuine. I lost my hair on my own terms, and I felt quite victorious. There is more than one way to let cancer know that you aren’t going to let it destroy you. This was my way of saying, “you may ultimately take my life, but you won’t take the happiness in my soul.“

A little over a year ago, I was diagnosed with cancer. First, I was told it was Stage 1. Then, it was changed to Stage 2. During the surgery, they realized it was really Stage 3. When I heard the word “invasive” I thought it couldn’t get any worse. Then I heard “aggressive radiation and chemo, followed by brachytherapy.” Shocked? Yes. Heartbroken? A bit. Realizing what was about to happen to me? No freakin’ way!

My mind and my body are forever changed because of that one simple word – Cancer. I have surgical scars and radiation burns that will never go away. The huge T-shaped abdominal scar will always look back at me from the mirror.

My body and mind are still dealing with the repercussions from chemo, radiation, and brachytherapy. Every single day of treatment, I knew that cancer was trying to kill me, and the treatments themselves were poisoning and burning me. That’s a hard reality to wake up with each morning.

Every single day, I am sick to my stomach and weak. If I happen to have a good day, there will be at least two bad days that follow. It is always three steps forward, and two steps back.

Every single day, I wonder “Is this going to be my last day?” Every single day, I remember that today could be the day it comes back. This could be the day it spreads. This could be the day it finally kills me.” Or it could just be a sunshiny warm day. That uncertainty is hard to cope with, every single day.

Inside, I’m angry that I had to do so much of this alone, at least, physically alone. I’m angry that some friends and some family just disappeared when I needed them the most. I’m angry that no one will ever really truly understand what I’m going through. And inside, I’m so grateful to those wonderful friends who were there for me; who “showed up,” long-distance, if not physically. It is so hard to be angry and grateful at the same time. It’s like having a love-hate relationship with every breath of air you take.

I’m heartbroken that the old me is gone. I’m angry that every day I wake up, I’m “Cancer Girl,” not Jan. And I know I always will be, from this point on, and that anger is really hard to deal with on a consistent basis.

I know the odds that it will come back, and what that means. “Thirteen percent chance of being alive in 5 years” – those words resonate in my brain more often than I care to mention. I carry that burden every day.

I’m angry that I have survivor’s guilt, as I watch so many in my cancer support group announce they are NED (No Evidence of Disease) and celebrate, only to die in the arms of their family two or three months later! It is so unfair to endure months and months of painful treatments, be told you are okay now, and then within months, you’re gone! How can there be any fairness in the universe when this happens to people who fought so bravely?

Sometimes I get angry when people tell me how strong I am, because I never had any other choice than to be strong. I’m sad because I can’t plan, or even imagine, my future. Every thought of a future starts with the words “if I’m still alive…”

My life, which has mirrored my mother’s life so closely, has shown me the frailty of life. She fought, was declared free of cancer, and two year later, she died with my Dad and I holding her hands, of a Stage 4 re-occurrence. Having done and seen that, how can not know how uncertain my future is. Do I even have a future?

I watched both of my parents die from this unspeakable disease. I was with both of them in their final moments. I’m the one who gave both of them support and comfort at the end. And I wonder, will there be anyone to hold my hand when my time comes? And truly, I know there probably won’t be.

I’ve hated cancer, not just for the pain of it, the treatments, the surgery, or the radiation burns, but for making me weak and dependent, and making others pity me. It’s something I never wanted – other people’s pity. I have always been so self-sufficient, able to adapt to every obstacle that life has thrown at me, but that may be gone now – maybe forever.

Tomorrow, I will probably be back to my cheerful appearance and demeanor. Tomorrow, I’ll say “I’m fine” again, even though I don’t think I’ll ever really be fine again.

Today, I’m sad, and angry, and disappointed, and losing hope – but just for today. Tomorrow, I’ll put the “I’m fine” mask on again, and even if it’s pouring rain, I’ll smile and notice the sweet smell of honeysuckle.

You may have noticed it has been over 6 months since I’ve posted. So much has happened since then, but I wasn’t ready to write about it until now. You see, in March, I was diagnosed with invasive cervical cancer.

After many doctor’s appointments, MRI with contrast, pet scan, a D&C, and surgical procedure to gather cells to test them, I was scheduled for a radical hysterectomy, bilateral salpingo-oophorectomy, and lymphectomy.

My MRI showed the tumor to be about 1.6 cm. However, I have bilateral hip replacements, which caused distortions in the MRI. So then, a pet scan was ordered. It showed the tumor to be about 2.4 cm. This meant that surgery was the best option.

But even the best laid plans do not always work out. Once the surgeon had removed my uterus, she found that the tumor was actually very deep and very tightly curled. The tumor was actually over 4.0 cm, which means that surgery alone would be ineffective. She also found that my cervical cancer had spread into the vaginal cuff and vagina, which meant she had to remove 2/3s of the vagina. She removed 11 lymph nodes. Several of them were non-functioning, but fortunately, none of them were malignant. Additionally, part of my abdominal wall had to be removed because of the cancer. The hardest part – my cancer had intravascular invasion. That means it was spreading.

This meant, that after 5 weeks of recovery time from the surgery, I had to undergo aggressive chemo and radiation. Radiation and chemo kicked my butt! I have never felt so sick and weak in my life. For almost 4 weeks during chemo, I couldn’t eat or drink anything. This meant many trips to the chemo center to get IV fluids. It also meant that I ended up losing 42 lbs in the 6 month period. I’m don’t mind losing weight healthfully, but this not the way I wanted to lose it.

Finally, 6 weeks after chemo and radiation ended, I am finally starting to feel okay again. I have energy again, and I’m able to eat better (although I am still very limited in what I can eat.)

Did they get it all? It will be three more months before we can collect cells and do imaging to find out. Even if I come out as NED (no evidence of disease) I will have to have imaging every 3 to 6 months for the rest of my life.

Even with surgery, radiation, and chemo, my chance of being alive in 5 years is between 32-35%. The odds aren’t great. However, I remind myself that none of us know when our time will come, and that I’ve had a great life, and done almost everything I ever wanted to do. I live each day as if it were my last – finding joy and happiness in each and every day.

The hardest thing was that as soon as I was diagnosed with cancer, I had to stop taking my biologic, which treats my PsA and psoriatic spondylitis. There are no other drugs that can help at this point because of my kidney disease, so there is nothing I can take to treat my PsA and psoriatic spondylitis. If I go back on a biologic, and even one spec of cancer has been left behind, the biologic will make it grow and spread very quickly, and I’m not willing to risk that. Of course, my PsA and spondylitis has come back with a vengeance.

So that is where I am, right now. Between surgery, radiation, chemotherapy, and brachytherapy (internal radiation), I spent the past 6 months either in bed, with no energy, throwing-up for hours on end with constant nausea and diarrhea, or in cancer treatment. My GI tract is damaged, my pelvis has softened from the radiation which is causing one of my hip replacements to loosen, and my left knee gave way, so now I have to wear a leg brace on the left side. I won’t lie, it was a horrible experience.

But in my heart, I know I fought as hard as I could. Whether I win or lose this battle, I know I did my best. Whatever the outcome, I’m okay with that. Life is beautiful all the time! I am happy for every day I get, and I’m finding the happiness and joy in very single day I’m blessed with.

Growing up, reading was always an important part of my life. I still remember when our local public library opened a children’s department, and most Sundays at 3:30pm, that is where you would find me. Being let loose in that magical room, and knowing I could select 3 books to take home with me was like being transported to a different world.

At my house, the newspaper was read after work by the adults, while we children read whatever might interest us. Before 4th grade, I had so many magazine subscriptions there was always something new and interesting to read. These were educational magazines, and they opened a world I had never seen.

There were always books on our bookshelves in the family room, especially Reader’s Digest condensed books. There was no such thing as a “children’s book” in my home – if you wanted to read it, you simply did. If it was too advanced for you, you simply wouldn’t understand it, and would move on.

You might think that I was always a good reader, but you would be wrong. I was the last child in my class to learn to read, and it frustrated me to no end. I didn’t learn to read until the end of first grade. My teacher, Mrs. Radar, never gave up on me. She told me that all flowers bloom when they are ready, and I would bloom and read when I was ready. With her, I never felt dumb or stupid, even as all the other children began reading, and I still couldn’t.

I would sit with one of my Fun With Dick and Jane readers and desperately try to recognize a word – any word, but day after day, they eluded me. While everyone else moved on, I still struggled with the first reader, We Look and See.

I remember one day towards the end of the year, staring at that book, willing myself to recognize a word – any word! “It” was the first word I recognized, followed by “look” and then “come.” Then the words all came together and told a story. Dick, Jane, Sally, Spot, and Fluffy all helped me feel like I had conquered the world! From that point on, I read everything and anything I could get my hands on.

My love of chapter books started in the 3rd grade, when Mrs. Arnquist began reading aloud every day after recess. She read the most incredible books, and it encouraged me to start checking-out chapter books instead of picture books at the library.

She encouraged us to learn new words by reading, and to share those new words with the class. It made learning vocabulary a game. We couldn’t wait for our turn to go up to the front of the class, tell our word, read the sentence we found with that word in it, and explain what it meant to the whole class. It was exciting! Yes, vocabulary was exciting!

We learned to use a dictionary that year. I remember one time, Mrs. Arnquist “bet” us an ice cream sundae if we could find an English word (excluding abbreviations) which had no vowel in it. We all read through the dictionary for days hoping to win that sundae, but of course, we never did find one.

At school, in 4th and 5th grade, our class went frequently to the school library, where Mrs. Katz, the librarian, ruled supreme. She could direct you to any book you desired, and when you weren’t sure what book to choose, she always had marvelous suggestions. I adored The Secret Garden in 5th grade. I chose it for its illustrated cover, but the writing entranced me. I was hooked.

In 4th grade and 5th grade, the reading aloud continued, each day, without fail. By this point, our teachers would announce the next book, and many of us would go the library and check out our own copy so we could read along. The only rule was we were not allowed to read ahead, so we wouldn’t ruin surprise twists and turns in the book.

Each day, we would beg our teacher to read more. Mrs. Rouse, our teacher in 4th grade, was a pro at ending at the best spots, leaving us begging for more. This is something I did when I became a teacher. I’d always pre-read the book, to find all the best stopping places that would leave my students begging for more.

To this day, I remember those books from 3rd, 4th, and 5th grade. Later in life, I read many of them to my own classes. Here are the ones that were the most memorable to me:
▸ By the Shores of Silver Lake
▸ Charlie & the Chocolate Factory
▸ Charlotte’s Web
▸ Farmer Boy
▸ Follow My Leader
▸ The Hiding Place
▸ Hitty, Her First Hundred Years
▸ Inky: Seeing Eye Dog
▸ Island of the Blue Dolphin
▸ Johnny Tremain
▸ The Life of Helen Keller
▸ Little House in the Big Woods
▸ Little House on the Prairie
▸ Little Town on the Prairie
▸ The Long Winter
▸ The Mixed-Up Files of Mrs. Basil E. Frankweiler
▸ My Side of the Mountain
▸ On the Banks of Plum Creek
▸ Ramona the Pest
▸ Runaway Ralph
▸ The Sign of the Beaver
▸ Snow Treasure
▸ Sounder
▸ Stuart Little
▸ The Summer of the Swan
▸ The Trumpet of the Swan
▸ The Witch of Blackburn Pond
▸ Where the Red Fern Grows

By the end of 4th grade, I was hooked – on chapter books! Long books, complicated books, grown-up books, books about war and poverty, exploration, making a new life, and life in far away or long-ago places. Every night, before bed, I sat on the floor of my bedroom, reading for at least half an hour. Sometimes, I spent most of my Saturdays reading, as well. I may have had a shaky start to reading, but later, it became life-changing.

Reading was not always smooth sailing for me. In junior high and high school, our district had a recommended reading list, and we were supposed to only read books from that list for school for book reports. This is when “the book report incident” happened.

We had to keep a log of all the books we read in our permanent file, so that we wouldn’t “cheat” and reread the book the next year, and reuse its book report. Once a book was on your book list, you couldn’t use it again.

I methodically kept my list, and every month would add to my reading log in my permanent file. By the end of 9th grade, I had read every single book on the entire recommended reading list for high school. Crime and Punishment, The Count of Monte Cristo, Les Miserables, The Three Musketeers, To Kill a Mockingbird, and The Great Gatsby – I had read them all. There were over 200 books on that list, and most of them were classics.

My English teacher in 9th grade, Mrs. Barlow, didn’t believe I had read them all, but she began to ask me about many of the specific books and found I could answer every question she had. When it came time for the next book report, she was in a quandary. We weren’t supposed to do book reports unless they were books from the recommended book list, and I had already read them all. She told me to read any book I wanted, and I felt quite special.

I had an entire bookshelf of books at home that were not on the recommended reading list. I wanted to choose the most incredible book, but simply couldn’t decide which book would live up to that honor.

I had a friend, we were both avid readers, and she shared a book with me. She loved to read “trashy romance novels” that she kept hidden from her mother. She alluded to me that it was a very “grown-up” book. I took that as a challenge. I was a good reader. I could read “grown-up books.”

I was quite naive for a 9th grader, and while I enjoyed the book, there were parts of it I didn’t quite understand, and there were other parts that seemed very grown-up, and were describing things that shocked me a bit. I thoroughly enjoyed the book, anyway. I decided this must be what “grown up” books were like. It was full of intrigue, romance, and yes, there was a lot of description of “grown up” things. It used words to describe body parts that I had never heard before, so in that way, it was very educational.

When the day came for me to stand up in front of the class and give my book report, my teacher looked at the cover of the book, and said that I would have to wait until the next day to give my report. She skipped my name and went on to the next student. I was surprised by this, and even more surprised when my teacher told me to come back to her class after school.

After school, I dutifully went to her classroom, and she gave me a sealed envelope that was addressed “To the parents of…” I wondered what I had done wrong.

At home, my mom always worked late, so I gave it to my dad. He opened it and read it slowly, and then asked me to go get the book I had used for my book report.

He looked long and hard at the cover, and then flipped through a couple of chapters. He asked me why I had chosen this book, and I told him that it was exciting, and I learned many new vocabulary words from it, and that it talked about things, grown-up things, I had never heard about.

I can’t really describe the look on his face. It was a mix of concern and amusement. I could tell that he really didn’t know quite what to say.

He asked why I didn’t read a book from the recommended reading list, and I told him that I had read all of them, and the teacher had said I could choose any book I wanted, and that my friend had loaned me this book.

Then he asked me to get him a piece of paper and a pen, and the wrote a note back to my teacher. At this point, I still didn’t know what the teacher’s note said. When my dad finished writing his note, he read the teachers note to me.

It said

“Dear Mr. & Mrs. Thomas,
I’m sorry to tell you that your daughter has chosen a very inappropriate book for her class book report. It is pure smut, and I know you would never have allowed her to read it. I cannot allow her to give a book report in front of the class on this book. She will have to read another book, and do a new book report.”

Then my dad read his reply before sealing it in an envelope.

It read

“Dear Mrs. Barlow,
I agree that this is not the most appropriate book for a 9th grader, but you did tell her that she could choose any book. Perhaps next time, you should say the book has to be approved before reading it for a book report.

You should know that I do not, and will not, censor what my child reads. My daughter struggles in every subject in school except reading. In reading, she excels. She loves to read. I am simply glad that she reads, and I will not tell her what she can and cannot read.

She should not be punished by being forced to write another report on a different book. She put in the time and effort to complete your assignment, and followed your instructions to read any book she chose. She spent hours reading this book, and preparing her book report according to your outline. I insist that you allow her to give the book report she has already prepared.

If you don’t feel it is appropriate to present it in class, please allow her to come to you during lunch or after school, and present it to you without any other students present.

I suggest that, in future, if you don’t mean “read any book you choose” that you shouldn’t say it. “

And with that, he handed me my book back.

And yes, I did stand in front of that teacher (during lunch) and told her all about the novel I had read, including detailed descriptions of sexual slavery, female domination, male anatomy, all with a trashy romance novel ending. Mrs. Barlow turned every shade of red you can imagine, but she listened to my report, and in the end, I got an A on it.

And yes, for my next book report, Mrs. Barlow told me I must get my book approved prior to reading it. I chose a book called “The Micronauts,” which was much more appropriate for a 14 year old girl. It was the book of the month with Scholastic, and had just been published. Mrs. Barlow was happy with this book choice.

To this day, I remember having a dad who was proud of me for being a good reader, who didn’t scold me for making a naive mistake, and who stood up to a teacher for me. I felt so empowered.

I also used that experience to realize that choosing what you read is an important decision, that not every book is worthy of my time, and that I alone make the decisions of what I should read. I also learned to never ask that friend to loan me another book.

In a time long before the internet, a simple card catalog and the Dewey Decimal System led me to the wonders of imagination and the universe. They sparked ideas I never would have considered otherwise. They let me see both sides of an argument, and make my own decision. They helped me find facts when others spouted statistics they didn’t source or verify. Reading not only taught me to use my imagination, but also to think critically about what others said and wrote as fact.

And to think – it all started in Mrs. Radar’s class, with We Look and See.

I looked. I saw. I read. I live.

Psoriatic arthritis (PsA) is not just “rheumatoid arthritis with a rash” as so many people seem to think. Psoriatic arthritis is a chronic disease characterized by a form of inflammation of the skin (psoriasis) and joints (inflammatory arthritis.) While it is possible to have PsA without psoriasis, typically, people with PsA have some type of psoriasis.

PsA is a chronic (long-term) disease, and currently there is no cure. But unlike other types of arthritis, people with PsA can develop inflammation of tendons, cartilage, eyes, lung lining, and, even rarely, the aorta. This inflammation can even attack the digestive system in the form of inflammatory bowel diseases. It certainly isn’t just “arthritis with a rash.”

About one out of five patients (20%) with PsA will develop inflammation in the spine, which is known as spondylitis. This condition is called psoriatic spondylitis (PsSpA). Patients with PsSpA may experience pain and inflammation along with specific or all areas of the spine, such as the neck, lower back, or pelvis. PsSpA can eventually lead to the total fusion of the spine, which happens when the spinal bones known as vertebrae become so stiff that they actually grow together, or fuse. Psoriatic spondylitis refers to inflammation in the joints between the vertebrae. People with PsA sometimes also get sacroiliitis, which refers to inflammation in the joints between the spine and the pelvis.

Many studies show that PsA increases the risk of developing heart disease by 40 to 50 percent. This is because long-term inflammation damages blood vessels and can lead to stroke or heart attack. People with psoriatic disease are at increased risk for developing non-alcoholic fatty liver disease. People with PsA have a greater risk of developing inflammatory bowel disease (IBD), including Crohn’s disease. Additionally, kidney disease may occur with PsA.

People with PsA are at an increased risk of developing other serious health conditions such as some cancers, heart attack or stroke, depression, diabetes, metabolic syndrome, obesity, osteoporosis, inflammation of the eye, as well as both kidney and liver disease.

With PsA, your immune system mistakenly attacks healthy tissue. It is an auto-immune disease that causes a person’s immune system to be overactive and attack one’s own body. In addition to inflammation, it destroys joints, connective tissues such as tendons and ligaments, and even some organs. This constant barrage of attacks against your own body causes the most intense fatigue you can imagine. When you body is constantly attacked by your immune system, it is like having the flu, every single day. The weakness and exhaustion as your body fights this erroneous enemy is overwhelming.

PsA leads to permanent joint and tissue damage if it is not treated early and aggressively. There are powerful medications that can help lower the immune system to a more normal level, and offer some relief to PsA symptoms, but these come with dangerous potential side effects, and leave you vulnerable to infections, especially tuberculosis and hepatitis, and to many types of cancer. PsA patients have to decide which is the lessor of two evils.

Tell me again how PsA is just a little arthritis with a rash?

PsA (psoriatic arthritis) is a strange disease. It has the word “arthritis” in it, but it is not anything like “old people” arthritis. It has nothing to do with bones rubbing together or wearing out – that is osteoarthritis.

It isn’t just rheumatoid arthritis “with a rash.” PsA affects joints, tissues, and some organs. It causes inflammation, in your joints and connective tissues. It causes your joints to narrow and become unusable. It causes all types of joint deformity and skin overgrowth.

It comes with “friends” (called co-morbidities) such as type 2 diabetes, high blood pressure, kidney disease, and liver issues. It can come with ulcerative colitis, irritable bowel syndrome, or Crohn’s disease. The constant immune battle that goes on in the body of a person with PsA causes fatigue and impaired reasoning. The impaired reasoning and confusion is often referred to as “brain fog.”

PsA is nothing like your grandmother’s arthritis, and stories about how she “cured” it with liniment, apple cider vinegar, and a special diet are not helpful. It isn’t the same thing. PsA is not just creaky joints or swollen knuckles – it is an autoimmune disease where your immune system is convinced that alien viruses are invading your body. Instead of protecting you from viruses, your immune system is confused and starts attacking itself. No one knows exactly why the body mistakenly does this, but there is a genetic component.

You see, with PsA, your immune system is over-active, and it mistakenly attacks your tissues, joints, and some organs. It can cause neuropathy in my feet, numbness in the hands, stiffness and swelling in the fingers and toes, inflammation, stiffness, and pain in the back and neck, a strange blurriness in our vision, and even kidney failure and liver disease. It can cause blindness if the eye because inflamed and it goes untreated. It causes pain, inflammation, horrible skin rashes, and deformed joints – but there is so much more to it than that.

One thing that is fairly unique to PsA is enthesitis. Enthesitis is inflammation of the sites where tendons or ligaments insert into the bone. It can actually cause the tendons to pull away from the bone. It happens in many areas of the body including your heels, knees, hips, toes, elbows, backbone, and the bottom of your feet. It feels like you have “worked out too hard.” Your muscles feel exhausted, and you can’t even lift your arms, feet, or affected area when it is bad.

The stiffness and immobility are worse first thing in the morning, and also get really bad after not moving for a while. Simply sitting too long in a car, or laying down too long can cause the pain and weakness. Your arms become limp and non-functional. Sometimes your hands curl and your fingers get stuck in odd and painful positions (called trigger finger) while you sleep.

There is no cure for PsA, but there are treatments that can make it less active. The medications that treat PsA are very powerful, and have many unpleasant side effects. They often make your hair fall out, cause all types of intestinal distress, make you nauseous, cause your nails to chip, crack, and fall out, leave you in a confused state where you can’t reason the way you used to, and can cause the most intense allergic reactions. They can even cause cancer (in rare cases.) They are also very expensive – with many of them costing over $10,000 for a one month supply.

Some people think they can just change their diet, add certain exercises, take certain herbal supplements, and their PsA will go away. While eating healthy and exercising is a good thing, it will not cure or even treat PsA. Without the powerful medications that inhibit the immune system, even if you start to feel a little bit better, the joint damage continues unchecked, and this damage is irreversible.

It is hard to understand, but you can’t just take a pill or get an injection for a couple of weeks, and then be “all better” and expect it will never come back. PsA doesn’t work that way. There is no simple solution, and if you have PsA, you can rest assured many medications are in your future. Without them, joint and tissue damage will run rampant. Joint damage is not reversible, so the sooner you get treatment, the better your outcome will be.

Typical symptoms of PsA include reduced range of motion, stiffness, difficulty moving or bending joints, redness and swelling, changes in nail shape and texture, general fatigue, swollen fingers and toes, swelling over tendons, and of course, the telltale skin rashes.

PsA is very unique to each individual, and the way it presents can be so different. One person may have dactylitis in his toes, while another person has deformed, swollen fingers. A third person, may have severe skin rashes, while a fourth person has difficulty walking due to plantar fasciitis. Another person may have agonizing back pain due to spondylitis. The treatment that works for one is ineffective for another. The medications that treat psoriasis are not the same as the medications that treat inflammation and degeneration of the spine. Treating PsA is highly specialized.

Because the treatment of PsA often requires several attempts before a drug therapy or combination is effective, laypeople often assume the doctor doesn’t know what she/he is doing because of a failed first or second treatment attempt, when the reality is that person’s PsA may just be particularly difficult to treat.

While many people begin their PsA journey with special anti-inflammatory or immune-boosting diets, exercises, alternative therapies like dry-needling or cupping, acupuncture, special soaps and ointments, and over-the-counter supplements, these tend to provide only temporary relief of some symptoms, and do nothing to stop the ongoing joint and tissue damage. Early intervention is important to minimize later problems. You don’t want to wait to “see what happens” because the damage from PsA is irreversible.

“Waiting to see” is the first response of an overwhelmed person newly diagnosed with PsA, or someone who is suspected of having PsA. “Waiting to see’ is the last thing you want to do. Each day that passes brings more irreversible damage to your joints and tissues. PsA never resolves itself on its own. It never just “goes away.” It certainly doesn’t go into remission without fairly aggressive treatment.

Time is not your friend when it comes to PsA. While there is no cure, you can get medications that will slow it down, and maybe even put it into remission.

Sometimes, but very rarely, PsA can go into remission for a period of time with treatment, but it always comes back, and usually with a vengeance. Even if you go into remission, you can’t stop taking the drugs, at least at a lower dose, or it will quickly come back.

And when PsA is extremely active, you suffer from debilitating fatigue. It feels like you have the flu, but it doesn’t go away. The immune system is so busy attacking itself, that you feel exhausted no matter how much rest you get.

PsA changes you. You can’t make plans, and if you do, you will find yourself changing them and backing out of things, because your body will shut-down at the most inconvenient times. You stop being able to process stress, and need to keep unnecessary drama out of your life – because your body will react physically to it. The anxiety of never knowing if you can actually do something, or participate in something you have anticipated, is real – very real.

Often, spouses, family, friends, and neighbors do not understand that PsA can flare up, making your ability to do things unpredictable. One day, you can do the laundry, and the next, you couldn’t do it if your life depended on it.

Frequently, people with PsA have to cancel-out of things at the last minute because their PsA pain flares up. When you frequently have to cancel plans, people stop inviting you, which leads to increased anxiety and isolation. Not feeling “in control” leads to depression and the constant pain makes a person wonder if life is worth living. People with PsA begin to feel left out, and that the world is passing them by.

Sometimes, people with PsA are unfairly accused of being lazy. It is hard to comprehend that people with active PsA need lots of rest, and that sometimes, they can sleep for 12 hours, and still wake up exhausted. When your immune system is attacking you, day-in and day-out, it takes a toll on your physical, mental, and emotional health. People who don’t have this debilitating disease have a hard time comprehending how it sucks the life out of you.

I have to add that PsA does not have to destroy your life. There are ways to continue finding joy in life, even though sometimes it doesn’t seem so. With the help of an excellent rheumatologist, the best possible treatment can be found, and it will help to diminish the pain and fatigue that is typical of PsA.

It often takes a lot of time, and trial-and-error, for the doctor to find the right treatment combination. This is because the meds used to treat PsA work so differently in different people. There isn’t one med that will treat joint swelling, and another that treats a stiff spine. What works for one person can completely fail with another person. It can be very hard to be patient when you are in pain, immobile, and exhausted.

If a friend or family member has PsA, here are some things you can do to help them.

• Be understanding when they have to change their plans at the last minute because they don’t feel well. You can’t just “push through” PsA. It is overpowering. It is overwhelming. Resting when your immune system is attacking you is essential – it is not a sign of giving-in.

• If a person with PsA has to cancel plans, keep inviting him/her anyway, or plan something else that they will be more likely to be able to do. Isolation is the enemy with a disease like PsA.

• When PsA is very active, things like house cleaning, laundry, preparing meals, gardening, all become practically impossible. Help out, if you can, or hire someone to help, if that is possible.

Family and friends can be a lifeline to a person with PsA, or they can be an anchor, dragging them to the bottom of the sea. Be the lifeline. Your support can make a devastating, debilitating disease bearable.

Even with PsA, people can lead a useful, happy life, if they have the support, compassion, and strength of their families and friends. PsA tries to steal the pleasure out of life – but supportive friends and family can help bring the joy back.

I went to a junior high school from the Fall of 1975 through the Spring of 1978. I wish I could tell you I have good memories of junior high, but that simply isn’t true. I was (am) disabled, and grew-up in a small town in Michigan, where all of my classmates accepted and befriended me. When we moved to Virginia the summer before 7th grade, I was very scared of starting a new school and meeting all new people. I had no idea what laid in-store for me.

If you knew me back then, my name was Janice, and I had (and still have) a strange way of walking that resembles a duck waddling, or a person wobbling from side-to-side. It was because of a skeletal abnormality. My pelvis and hip joints never formed properly, which left me unable to walk as a toddler. I had bilateral hip dysplasia that was so severe I got a hernia the first time I tried to walk.

I spent most of my preschool years in and out of hospitals. I had always known I had this disability, and had gone through twelve very painful surgeries and almost 3 years in body casts, so that I could walk. I didn’t walk like other people, but at least I could walk. I knew this, but didn’t consider myself any different from anyone else.

Where I grew up, no one ever treated me as different. When we’d play kickball at school, I’d kick the ball, and then one of the other kids would run the bases for me. I never had to ask – we all just knew. When we’d run races, the other kids would give me a head-start, so I could do it too. I was friends with everyone. They were friends with me. And I was always included.

Then we moved in 1975 and I started 7th grade at a new junior high school. The cruelty and bullying that was aimed at me was beyond anything I could have imagined. Because of my disability, I was teased, called names, pushed over, had rocks thrown at me, and was taunted on a daily basis. I was beaten up in the hallway leading to the girls locker-room more times than I can say. (There were no other classes in that hallway, which meant there were no teachers around.)

I had never experienced any of this prior to coming to Virginia. I had no idea how to react or respond to it. I came home every day in tears. I begged my parents not to make me go to school every single morning. Before coming to Virginia, I had loved school. Now, the only thing I wanted was to be invisible.

Some of the “cool kids” decided to nickname me “Weeble Wobble” and they would hum or sing the song from the commerical – “Weebles wobble but they don’t fall down!” as I walked down the hallway. A favorite thing they liked to do was get on each side of me in the hallway, and slam into me from the side, to see if they could make “the weeble” fall down. Sometimes, they would just knock the books out of my arms, but more often, they would completely knock me over, and I’d have to struggle to get up and gather my books, while people stepped over and around me. This happened daily.

I had a really hard time walking, so I’d fall sometimes in gym class, especially if the sport required that I run. I couldn’t really run, so I’d just walk as fast as I possibly could. When I fell, the other kids would just laugh at me as I struggled to get back up. When we picked teams, I was always picked last, and there were often comments like “do we have to have her on our team? She’s a loser!” The gym teacher never said a word to them about their behavior.

I hated dressing-out for gym class, because it meant changing clothes, which meant the other girls could see all of my scars from my twelve childhood surgeries. The “cool girls” would point and laugh, and say I was “all sewed up.”

For three years, I attended that junior high, and for three years, I was despised and taunted. I learned to hate school, and try to be as invisible as possible. I would tell teachers what was happening, but they didn’t do a thing about it. I grew to hate my teachers, because they saw what was happening, and did nothing. My grades plummeted and for two of the three years, I didn’t have a single friend.

It was three years of being beaten-down, mentally, emotionally, and even physically. Because of my disability, I couldn’t run to get away from those who bullied me, but their cruel words hurt far more than the times they beat me up or threw rocks at me.

If they didn’t like my personality, so be it. If they didn’t want to be my friend, that was their right. But to taunt me over my disability, something I had no control over and couldn’t possibly change, was beyond unfair. To physically hurt me because they knew I wasn’t able to run away or fight back was beyond cruel. To those who taunted me, and to those who stood by and watched it happen, and did nothing, I only hope that somehow they found a way to live with themselves.

Years later, I ran into one of my tormentors as I was walking down the street in my neighborhood. She hollered across the street “I’m sorry I was so mean to you in Junior High.” I stopped and stood there for a moment, and finally answered “What do you expect me to say? That it’s okay? Don’t worry about it?” And then, I walked on.

I guess I should have told her that I forgive her, but she caught me off-guard. At that exact moment in time, I wasn’t ready to forgive. At that time, I still didn’t realize that I hadn’t brought all of this on myself. Deep down, I still believed that if I had done something differently, if I had been “good enough,” they would have liked me, and that it was my fault, that I had done something to cause what happened to me.

This was a year after I finished high school, and I still blamed myself for my misfortune. Honestly, I wasn’t even convinced she was being sincere. It wasn’t like she had sought me out to apologize, she just happened to pass me on the street. There was no explanation for her actions, no sincere expression of remorse – just a casual comment, hollered across a street. She didn’t even cross the street to speak directly to me.

There is, and always will be, a part of me that wonders if I should have replied differently. I don’t think I was wrong, but I’m really not sure.

I was born with very severe bilateral congenital hip dysplasia. The twelve hip surgeries I had before the age of 5 allowed me to walk, but my gait has always been abnormal.

My five childhood osteotomies and use of a position brace allowed me to learn to walk. Until my tendon lengthening surgeries at age 4, I was a toe-walker and unable to flatten my foot to include my heels in my step, but that particular surgery (and subsequent physical therapy) fixed that issue. Since then, my walking pattern is a mixture of three identifiable gaits — Waddling gait, Trendelenburg gait, and Antalgic gait.

Waddling gait means that when walking the part of the pelvis of the leg moving forward moves outward and the part of the leg which is normally placed moves inward. The reason for a Waddling gait abnormality is weakness of the proximal muscles of the pelvic girdle which causes weakness of the gluteus muscles. It is often referred to as “walking like a duck” and indeed, during my entire childhood, I was teased that I walked like a duck.

The second is Trendelenburg gait, which is caused by hip abductor weakness — the pelvis tilts downwards instead of upwards on the non-weight bearing extremity. In an attempt to lessen this effect, the person compensates by a lateral tilt of the trunk away from the affected hip, thus center of gravity is mostly on the stance limb causing a reduction of the pelvic drop. This condition makes it difficult to support the body’s weight on the affected side. Trendelenburg gait is very typical of people with congenital hip dysplasia. My Trendelenburg gait is especially noticeable on the right side.

The last is Antalgic gait. An Antalgic gait is a gait that develops as a way to avoid pain while walking. It is a form of gait abnormality where the stance phase of gait is abnormally shortened relative to the swing phase. It is totally a response to constant hip pain, and is a reactive stance gait. In my case, this is a response to several things — my weak abductors, my limited adduction, my leg length discrepancy, and my hip height discrepancy.

You may ask, how do I know that my strange way of walking is a mix of these three gaits? I did not know the names of these gaits until I was in college. The head of the physical therapy department saw me walking one day, and approached me to ask if I had hip dysplasia. I told him that I did, and he asked me to “help him out.”

For the duration of my college experience, I was a gait model for the physical therapy department. Young physical therapy students were asked to observe my gait and determine my gait pattern(s). Once they determined this, the department head would have them develop a PT plan for this, and when they all had, he would demonstrate how to work with a patient with weak hip abductors, limited adduction, and weak medial glutes.

It made me feel good to help in this way. By identifying gaits, physical therapists can help a patient strengthen weak muscles and improve their walking ability, balance, and strength. While physical therapy can’t eliminate these gaits if the underlying causes have not or cannot be repaired, it can help each patient to lead a more independent life, and avoid falls by increasing balance and mobility.

Even now, after a total of 19 hip surgeries, including two total hip replacements in my early 30s, I still have these distinctive gait patterns. Hip replacements could not undo the prior thirty-some years of muscle development (and atrophy,) or fix my skeletal abnormalities. Even with hip replacements, my pelvis is still mis-shaped, as are the angles of my artificial hips. My skeletal abnormalities will never permit full abduction and adduction range-of-motion, which leaves my hip abductors, hip flexors, and gluteal muscles forever weakened and unable to fully function.

The severe unsteadiness that remains because of this leaves me balance-impaired. However, assistive devices, such as my rollator, dual canes, or forearm crutches, help me maintain my balance while walking or standing, and helps me prevent falls. On-going physical therapy helps me to maintain as much balance and mobility as possible.

I spent my entire life working 60-80 hours per week, for no extra pay, and being so proud of my work ethic. I didn’t take vacations, hurried back from illnesses before I was ready (or came to work sick) and was very proud of my commitment and dedication. I worked in two different low-paying professions throughout my life because “I was making a difference” and “serving my community.”

If I could give any advice to young people today, I would say, “Don’t give your life away. Don’t be complicit in a lifestyle that always puts you last, and some noble cause first.” I’m not saying people should be selfish or self-centered, but to realize that people treat you the way you let them treat you, the way you encourage them to treat you, the way you direct them to treat you.

Your life is just as worthy if take time for yourself, your family, your friends, and set reasonable boundaries. It actually makes you a better person. You have more to give, because you haven’t been drained of your energy by an unbalanced life. Stand up and realized that living your own life is just as valuable, and that there are greater virtues than working hard and giving all.

I always thought that when I got to retirement age, there would be time to spend with family, to share good times with friends, to travel, to do all the things I never had time for before. Then I got sick, and realized my family is gone now, I never had the time to make deep, lasting friendships, I’m no longer able to travel, and I’m not able to do all those things I tucked-away until “later.”

For me, later isn’t coming. It is my one great regret in life.

Here are some recent statistics about PsA, an autoimmune disease that causes a person’s overactive immune system to attack that person’s own joints, cells, organs, and connective tissues. There is no cure for PsA.

PsA is not life-threatening. You don’t die from PsA (although you can die from many of the side effects of the treatments and co-morbidities.) The damage done by PsA limits your quality of life by destroying your joints, inflaming your connective tissues, damaging your eye sight, causing extreme fatigue on a near-constant basis, and leading to brain fog, a condition that causes confusion, lack of focus, inability to reason or problem solve, and memory loss. It steals a person’s independence and ability to do basic daily tasks.

Many of the treatments that are currently available are insanely expensive, are excluded or severely limited by health insurance plans, and can cause kidney failure, liver disorders, stomach and intestinal distress, induce Lupus, or in some rare cases, can cause the patient to develop cancer.

While there are many treatments to try, it is very difficult to predict which symptoms will respond to which treatments. These treatments have very different success rates in different people, and even once a treatment begins to work, it frequently stops working for no apparent reason, resulting in the patient having to change treatments unexpectedly.

While treatments do help lessen the symptoms for many people, only a small percentage of people with PsA actually go into remission, and even fewer stay in remission.

My rheumatologist diagnosed me with secondary Raynaud’s phenomenon (sometimes called Raynaud’s disease or Raynaud’s syndrome) two months ago, but I’ve clearly had it for many years. I just didn’t know what it was called. The diseases most often linked with Raynaud’s are autoimmune or connective tissue diseases. I have both.

Raynaud’s phenomenon is a problem that causes decreased blood flow to the fingers. In some cases, it also causes less blood flow to the ears, toes, knees, or nose. This happens due to spasms of blood vessels in those areas. The spasms happen in response to cold, stress, or emotional upset.

I’ve clearly had this issue for years, and it has affected my ears, nose, fingers, and toes over the course of time. I had no idea it could affect the knees – until two weeks ago when I found myself with white, pale knees each day that were cold to the touch.

The blood is unable to reach the affected areas because the nerves and blood vessels are constricted. Cold climates, repetitive vibrations, or simple chills can bring on the symptoms. Fortunately for me, I now live in the warm state of Florida. However, stress and emotional upset can bring on symptoms, often even more seriously than exposure to the cold. I have to avoid simple things like putting my hands in cold water or taking cold items out of the freezer. Any little bit of cold air or water can trigger an attack.

Physical symptoms of Raynaud’s don’t require extreme circumstances to be triggered. Relatively minor conditions, like holding a really cold drink or being in an air-conditioned room can bring on an episode of Raynaud’s. Because emotional stress can also be a trigger, managing or avoiding anxiety-producing situations can also help to reduce episodes of Raynaud’s.

In my case, the trigger always seems to be emotional stress and anxiety-producing situations. The stress and anxiety are caused mostly by my many medical treatments, and the constant battles with the insurance company to get or continue the treatments that I need. These endless battles take a serious toll on my health and my emotional well-being.

In my case, my fingers and toes (and sometimes my ears, nose, and knees) turn color from white to blue, and sometimes red. This change of color is due to reduced blood flow. When the skin turns white it is called pallor. As blood remaining in the tissues of an affected area loses oxygen it turns blue and is referred to as cyanotic. When warm, oxygenated blood returns to the area it may turn red. There can also be pain or discomfort including a tingling or “pins and needles” sensation, followed by throbbing.

I bought a new domed cake plate that I’ve always wanted. It is Godinger crystal, and I have to say, it is gorgeous. It was on clearance from a department store I used to shop at, and the price was incredible, so I bought it. I’m not sure what possessed me to buy it. I haven’t actually made a cake in over 10 years, and with my PsA and the enthesitis in my elbows/wrists/hands, my ability to cook, bake, or even do basic things that require gripping, is extremely impaired.

I’ve been on a new biologic for two months now, and I’m starting to get a little more use of my hands and arms. I’ve been able to do a few things I haven’t done in a while – like cut my own food, and even cook my own meals (very simple ones.) It’s making me feel empowered. There is, however, a very fine line, because PsA is true to form, and pops up at the most inopportune moments just to remind me that I’m not in control of my life. This soul-crushing disease rears it’s ugly head whenever I start to feel better about things, or start to see some semblance of a normal life.

I decided I was going to make a cake to put on my new cake plate. I haven’t made a cake in at least 12 years (other than a microwave cake, which doesn’t count.) It felt very empowering to do something like this again. I’ve been looking forward to it for days. I planned to invite my neighbors over later today to have some cake and coffee. (I don’t actually drink coffee, but I know other people like it.)

I decided on my double chocolate swirl cake with white icing in between the layers, chocolate icing on the outside, and chocolate curls on top. It was really hard mixing the cake because of my hands. Holding the mixer for two minutes while beating the batter was really tough, but I did it. I did all the fancy fudge swirls in the batter, and baked them, and they baked perfectly! (I’ve never baked in this oven, so I wasn’t sure if it was level and the right temperature.) I tested the layers with a toothpick in the oven, and they were done perfectly. I took one out of the oven, very carefully, and put it on the cooling rack. It was perfect.

I carefully took the second layer, and then it happened — my grip just let go (damn inflamed tendons!) Enthesitis in your elbows will do that – you suddenly can’t grip something, or you have a grip on it, and your hand just “lets go” and flops helplessly to one side.

The pan slipped from my hand, and the next thing I knew, it was upside-down on the floor with hot broken chocolate swirl cake all over the tile! I stood there in shock, and then, I burst into tears. Not just tears — ugly sobbing tears — over a ruined cake! How embarrassing! I’m usually a very composed person. I don’t cry over things like a ruined cake!

So then I was in a predicament, because the cake was all over the floor. I can’t bend down to clean it up because of my balance impairment caused by spondylitis, and I can’t leave it there because if they dog sees it, she will gobble it up before I can stop her, and she is incredibly sensitive to chocolate. I thought about getting a broom and long-handled dustpan and trying to sweep it up, but that would smear it all over the tile floor.

So of course, I did what I always do in times of trouble – I messaged my neighbor, Pete. Bless his heart, he came right over and picked up the big pieces, swept up the crumbs and the small pieces, and washed the part of the tile floor that was all chocolatey.

I told him I felt like a complete idiot crying over a smashed cake, we joked around for a while, and he tried to make me laugh. All the joking did make me feel better, and after a couple of minutes, we were both laughing.

I’ve had so many things in my life that were worth crying over — serious losses, sad moments, hard realizations — and I totally managed to keep my composure, and then I cry over a ruined cake! I guess it was because I had put so much energy into making it – it made me feel so normal to do it – and then in a second, everything was a mess and my plans were ruined. This is the legacy of PsA – ruined plans and a feeling of not being good enough.

So before he left, the one remaining layer had cooled, and I asked him to flip it onto a plate for me (because I could just see myself losing control of it and dropping this one, too.) He did, and now I’m trying to figure out if I even want to bother frosting a single layer. It hardly seems worth all the effort. All that mixing, and swirling, and cleaning up dishes (mixing bowls, beaters, measuring cups, measuring spoons, etc.) all for this one layer of cake.

By this point, you may realize that my story is not really about a cake. I only made a cake because I wanted to feel normal again — do things I used to enjoy — do things that make me feel like a normal person again, simple things, like making a cake. I definitely don’t feel normal right now. I can’t even get a cake pan out of the oven! And if I accidently make a mess, I can’t even clean it up myself. That doesn’t feel very normal.

I’m feeling a bit defeated right now. I’m trying to laugh about it, but I keep going back and forth, between laughter and sadness. And as much as I sometimes hate being alone in the world, I can’t imagine try to explain these feelings to another person, and hoping he would understand, while all the time knowing that he wouldn’t. Sometimes, being alone has its advantages.

I’m determined not to let this get me down. I’m trying to be totally over it, and just laugh about it, but honestly, it’s a struggle. That voice inside me keeps saying “You aren’t good enough. You’re never going to be good enough. You can’t be like other people…so why keep trying? Just give up, already!“

I’m not going to give-in to that voice — but the struggle is real – and it has nothing to do with cake.

Years ago, an old friend found me on Facebook. I’ll never forget his first message. He asked if I remembered him, and went on to say that he would understand if I didn’t. I was a little shocked by that statement, because we had been really close friends during junior high and high school, we used to talk on the phone all the time, and we shared the most personal thing in the world to either of us – our writing. I could have never forgotten him.

We both aspired to be writers. We both went on to do something completely different with our lives, while keeping our love of expressing ourselves in writing — he in the form of poetry, and me in the form of prose.

We both went on to experience physical problems that changed our lives in ways we never anticipated. With me, it was my legs. With him, it was his vision. And still, we both found ways to have happy, meaningful lives.

The funny thing is, Mike and I didn’t go to any of the same schools. We didn’t even live in the same city. We met in 9th grade when we both were selected for the all-state chorus. There were four of us from my junior high who were selected and went together. We were all sopranos. We all sat together in that huge group of strangers for rehearsals and the performance.

We were in the last row of sopranos, and right behind us were the tenors and basses. There was a young man sitting right behind us, and somehow one of the girls I was with picked-up on the fact that he was by himself. That was Norene, and true to her beautiful spirit, she turned around and introduced herself, and drew that young man into our group for the rest of time. We all became fast friends that weekend.

We all shared a love of singing. Eventually, we all joined the same youth church group, and we remained close through high school. Eventually, our lives took us into different directions and different places, until years later, when we found each other again on Facebook. To this day, I enjoy reading some of his current poetry, which he sometimes posts online.

While going through my books this week, I came across a notebook I had in high school, where I wrote poems from age 14 through 18. Now, I admit, looking back on them, that most of them were just plain dreadful, but hey, I was just a kid.

In my old notebook, I came across this poem that I wrote on October 18, 1981 (for Mike’s birthday the next day) while sitting, watching a fire burn in the fireplace on a chilly October evening.

It brought back such good memories of two friends who shared their writing with each other. I decided to share it with “vintage” friends (you notice I didn’t say “old” friends.) Even after all the years, Mike is still my October kind of friend.

An October Kind of Friend (Written for Mike)

Bleak October, cold and gray,
Thy quiet nights and whispy days
Made my soul lain-back and weary,
Quiet, dim, and all but dreary;

‘Til a tiny flame arose
Into a fire did transpose
And fire turned to blazing roar
And then the flame was seen no more

The fire blaze with warmth and ember
Warmth to last me through September
‘Til October comes again.
You’re my October kind of friend.

-JMT 10/18/1981

Today is Patriots Day — the day we remember what we promised we’d never forget!

Nineteen years have passed since that fateful day, and I still tear-up remembering as I sat, glued to the TV screen, in utter disbelief. No matter what channel you turned to, it was the only thing on. Networks shared news footage for the first time ever, soap operas didn’t air, and home shopping channels (all the rage then) respectfully went off the air.

We watched as we thought the first plane crash was an accident. At first, everyone thought it was a small aircraft that hit. We listened to news reporters speculating on what type of plane could have done that much damage, but we were still in the dark about what was happening. It wasn’t until the second plane hit that we realized we were under attack.

I distinctly remember when the second plane hit. A startled news reporter asking “was that another plane?” One of the reporters “on the street” was interviewing a father who had rushed to his daughter’s day care after the first tower was hit, to pick her up. The little girl, who couldn’t have been 5, was tightly gripping her daddy’s hand when the second plane hit. She looked up at him and said “Look daddy, they’re doing it on purpose!” That little girl so easily saw what the rest of us had not yet figured out. But in the next few seconds, it all became perfectly clear — America was under attack.

Then it all became a whirl — the first tower collapsing, our President being informed of the situation while in front of a group of small school children, and maintaining his composure, the Pentagon being hit, our President being quickly whisked-off in Air Force One to destinations unknown, and then later, those brave passengers on the fourth plane and their tragic goodbye phone calls, as they took matters into their own hands, crashing the plane — preventing even more carnage.

We remember those horrific scenes we can never erase from our minds, of people trapped above the fire on the second tower, choosing to jump to their deaths to avoid the inevitable flames. We remember the collapse, and the white ash, and the boats that showed up in droves to transport trapped New Yorkers from harm’s way. We remember every US plane ordered to land, leaving Americans stranded all over our country and Canada, and the communities that stepped-up to care for them.

And how can we ever forget the days after — when we are all proud to be Americans, and we banded together. We promised we’d never forget. American flags were everywhere. We all took strength from those brave first responders who lost their lives trying to save others, and those heroic passengers on the fourth plane. We felt a surge of pride at that great bravery and selflessness. For one brief time, we didn’t care about politics, we weren’t Democrats and Republicans, we weren’t liberals and conservatives — we were Americans! If only it didn’t take great tragedy to bring us all together.

Congenital hip dysplasia describes a multitude of conditions. Some are very mild and may not even be noticed until adulthood. In other cases, the deformities are so severe that the child is unable to weight-bear without surgical intervention and cannot learn to walk as a toddler. How can one term, hip dysplasia, describe such a huge range of hip deformities? Why are some people only mildly affected by this condition, while others are severely disabled?

First, let’s start with some background knowledge. The hip is a ball-and-socket joint. The “ball” refers to the femoral head. The “socket” refers to the acetabulum which is a part of the pelvis.

In some cases, the femoral head is mis-shapened or at the wrong angle to fit into the socket (the acetabulum.) In some cases, the acetabulum itself is just too shallow to hold the “ball” (femoral head) or it is in completely the wrong location on the pelvis (too high or too low.) Sometimes, both the femoral head and the acetabulum are deformed or otherwise unusable.

Congenital hip dysplasia occurs more often in girls than in boys. (It is eight times more likely to occur in girls.) There is a genetic component to hip dysplasia. Most often, hip dysplasia occurs in one hip. For reasons no one completely understands, it occurs in the left hip more often than in the right hip. When you have dysplasia in only one hip, it is called unilateral hip dysplasia. Sometimes, much less often, it occurs in both hips, and that is called bilateral hip dysplasia.

Congenital simply means it is present from birth. This is misleading, because when babies are born, their hips are not fully finished developing. For this reason, this condition is sometimes called developmental hip dysplasia, because it happens as the hip develops.

Congenital hip dysplasia cannot be detected prior to birth. In the US, each baby is check at the hospital for hip dysplasia at birth, but it often goes undetected because the hips are not fully developed. Babies with family histories of hip dysplasia, as well as those who are breech births, or born to mothers with low amniotic fluids, need to be rechecked as their hips develop. Catching this condition early is key in a positive outcome or recovery.

Sometimes, hip dysplasia can occur later in childhood. This is typically caused by Legg-Perthes disease (also called Legg-Calve-Perthes disease.) This disease cuts off some of the blood supply to the femoral head, causing it to deform and lose its round shape. The blood supply eventually returns, but at that point, the damage is done.

If hip dysplasia is caught early, during the first few months, and if it is mild, a device such as a Pavlik Harness can help in reshaping the joint so it will be more functional as the child grows. A Pavlik Harness can only be used on babies younger than about 8 months. It works best on very young babies. It is worn for 6-12 weeks while the baby’s joints are developing. If this approach fails, if the child is too old when the dysplasia is discovered, or if the dysplasia is too severe, then the next step is often a femoral or acetabular osteotomy (or both.)

An osteotomy is when a surgeon cuts and reshapes bone to make it more functional. The bone may be shortened, lengthened, or the angle can be changed to cause realignment. When it comes to hips, there are two basic types of osteotomies, a femoral osteotomy (FO) and an acetabular osteotomy (AO).

In a femoral osteotomy, the ball portion of the hip socket can be reshaped to make it more round, the femoral neck can be shortened or lengthened to make it fit into the socket better, or the angle of the femoral neck and head can be changed. In an acetabular osteotomy, the socket portion of the hip joint can be made deeper, it can be increased, or a section of the pelvis can be cut out, turned, and pinned into place to make better contact with the femoral head.

For most osteotomy procedures, pins and plates are used. Children are placed in body casts after the surgery to assure they do not weigh-bear or change position during the recovery time. Most of the time, another surgery is performed afterwards to go back in and remove the pins and plates after the bone has healed.

There are many types of osteotomies, depending on the deformity that is present. Sometimes, there are multiple deformities causing the hip to not function properly. In extreme cases, more than one osteotomy per side may be required, leading to multiple surgical procedures.

You may ask, why not just do a hip replacement? You can’t do a hip replacement on a child because their bones are still growing, and replacements do not grow. For this reason, they are not an option for growing children. For many, the growth plates do not seal until around age twenty, and hip replacements are not an option until after the growth plate seal.

In young adults, in their twenties and early thirties, if no osteoarthritis has set in, a hip preserving surgery called a periacetabular osteotomy (PAO) is often recommended. Recovery time is longer than for a hip replacement, but the results are often remarkable. This type of procedure is called hip preservation, and preserving the natural bone is almost always preferable to replacing it with implants. People who get a PAO often have to have total hip replacements later in life.

You may ask why not simply give a total hip replacement (THR) as soon as the person’s growth plates have sealed? The reason is very simple. While hip replacements have advanced so much in the past decades, they still only have a life expectancy of 10-15 years. Then, they wear-out, and have to be fixed. When you fix a hip replacement, it is called a hip revision.

Revisions can be as basic as replacing the liner in the “socket” part, or as complex as removing the “stem” portion (the long spike part that goes into the femur) and replacing it, which often requires bone grafts and a much longer recovery time. Each revision is more difficult and more involved than the original hip replacement, and often, each time a revision is done, the person has less bone to work with, requiring bone grafts, and other metal parts (such as screws and bolts) to hold the prosthesis in place.

The outcome for people with hip dysplasia vary a great deal. Those with mild dysplasia and early intervention tend to do well. They often need to limit some activities, such as contact sports and high-impact activities, but are able to maintain a fairly normal lifestyle. Differences in leg length and hip height often leave a tell-tale limp.

Those with more severe deformities and multiple surgical procedures tend to have much more restricted outcomes. People with more severe deformities and multiple surgical repairs tend to suffer from diminished range-of-motion, weakened muscles, muscle atrophy, and very weak hip flexors and hip extensors (glutes), which greatly restrict their walking and standing ability. In these cases, physical activity is often restricted to walking, swimming, and no-impact exercises.

The last part can be very touchy to talk about. Weight has a huge importance in continued hip health. The plain truth is that the more you weigh, the more wear-and-tear you put on your hips. However, people with restricted motion and who use treatments like steroid therapy (a common treatment for pain and inflammation in hip patients) often lead to serious weight gain. It is very common for an orthopedic surgeon to insist a patient lose weight prior to hip preservation surgery or hip replacement surgery.

The reason for this is that these procedures have a much better chance of working if the patient is not obese. Recovery statistics for those who are morbidly obese are not good. Many surgeons will not even consider hip surgery on a patient with a BMI of greater than 35, with most surgeons preferring a BMI of less than 30. (Different doctors have different preferences.) For those whose BMI is greater, weight loss has to take place first – oftentimes leading to bariatric surgery or the use of rapid weight loss techniques such as medically-monitored liquid diets with extreme caloric-consumption controls.

It is not uncommon for surgeons to tell patients “come back when you’ve lost 50, 75, or 100 pounds.” Hearing that you are “too fat” for hip surgery is a very difficult thing to hear, especially when osteoarthritis and hip pain limit your mobility, reduces your exercise options, and some treatments (such as steroid therapy) can cause weight gain. Many orthopedic surgeons refuse to do surgery on those who are obese or morbidly obese. The prognosis is not as good for people who are obese, and the chance for complications is greatly increased. Co-morbidities of those who are obese, such as diabetes, high cholesterol, high blood pressure, and heart disease add to the risks, as well. Sometimes, bariatric intervention, such as a gastric bypass or gastric sleeve have to be considered.

Early detection and treatment improves the life experiences of people with hip dysplasia. Surgical advances have increased the likelihood of normal mobility, and have decreased pain and range-of-motion limitations. The severity and location of hip deformities, the age when receiving initial treatment, ongoing treatment as the person ages, and medical advances all play a part in the recovery potential for people with hip dysplasia.

I hope you’ll take a moment to leave a comment regarding your life journey with hip dysplasia. This can be a very isolating condition, and simply knowing there are others out there with the same condition can make the journey easier for those of us who are traveling this path.

When you have psoriatic arthritis (PsA) you can rest assured many medications are in your future. Without them, joint and tissue damage will run rampant. Joint damage is not reversible, so the sooner you get treatment, the better your outcome will be.

Typical symptoms of PsA include reduced range of motion, stiffness, difficulty moving or bending joints, redness and swelling, changes in nail shape and texture, general fatigue, swollen fingers and toes, swelling over tendons, and of course, the telltale skin rashes.

PsA is very unique to each individual, and the way it presents can be so different. One person may have dactylitis in his toes, while another person has deformed, swollen fingers. A third person, may have severe skin rashes, while a fourth person has difficulty walking due to plantar fasciitis. Another person may have agonizing back pain due to spondylitis. The treatment that works for one is ineffective for another. The medications that treat psoriasis are not the same as the medications that treat inflammation and degeneration of the spine. Treating PsA is highly specialized.

While many people begin their PsA journey with special anti-inflammatory or immune-boosting diets, exercises, alternative therapies like dry-needling or cupping, acupuncture, special soaps and ointments, and over-the-counter supplements, these tend to provide only temporary relief, and do nothing to stop the ongoing joint and tissue damage. Collectively, these are referred to as non-conventional treatments.

There are four basic conventional treatment options for PsA:

1. Therapy, including massage therapy, physical therapy, and occupational therapy, to reduce pain and inflammation.
2. Protective devices, in the form of splints and braces, that are sometimes used to immobilize affected areas or protect them from further impact or damage.
3. Surgery, which is used only as a last resort, to replace damaged joints and tendons, or to relieve entrapped nerves or malformations caused by bone calcification or ossification.
4. Medications to reduce inflammation and to stop an over-active immune system from causing further medical issues.

While many people start their PsA journey with their Primary Care Physician (PCP), or a dermatologist due to psoriasis, psoriatic arthritis is a rheumatoid disease, and its long-term care requires a rheumatologist. Because psoriatic arthritis is a fairly rare rheumatoid disease, it is always best to seek out a rheumatologist with a great deal of experience with psoriatic arthritis patients.

Not delaying in getting that referral is very important. Early intervention is important to minimize later problems. You don’t want to wait to “see what happens” because the damage from PsA is irreversible. Be aware that in most areas there is a shortage of rheumatologists, and the wait for a new-patient appointment can often take 6+ months.

When you first met with your rheumatologist, you will be inundated by an alphabet-soup of acronyms, initials, and unpronounceable treatment options. It is easy to become overwhelmed by the treatment choices, drug interactions, and potential side effects. It is typical to look-up these medications on the internet and then be horrified at the list of possible side effects – everything from developing cancer to having heart attacks can be listed. A good rheumatologist can put these side effects into perspective, and help you decide which benefits outweigh the risks.

“Waiting to see” is the first response of an overwhelmed person newly diagnosed with PsA, or who is suspected of having PsA. “Waiting to see’ is the last thing you want to do. Each day that passes brings more irreversible damage to your joints and tissues. PsA never resolves itself on its own. It never just “goes away” without fairly aggressive treatment. Those non-conventional treatments may make you feel better in the short-run, but the whole time, your joint and tissue damage is growing worse. Time is not your friend when it comes to PsA. While there is no cure, you can get medications that will slow it down, and maybe even put it into remission.

As a layperson, you can look-up information online, read for hours, and still have no idea what is being said. Educated people, with advanced degrees and lifetimes of experience, are left boggled and confused by the highly-specialized and often contradictory information you will find on the internet. As laypeople (non-medical, non-experts on the subject), we have to rely heavily on the recommendations of our rheumatologists, who are experts. My four hours of research on the internet are no match for my rheumatologist’s 10+ years of specialized medical training, and years of experience directly treating this illusive disease.

The difficult part here is two-fold – not all rheumatologists are as up-to-date as they should be when it comes to psoriaitic arthritis diagnoses and treatments, and even the most expert rheumatologists are not always good at explaining the options, benefits, and risks in terms we non-medical people can understand. Rheumatologists sometimes leave us, non-medical laypeople, to decide between treatment options that we don’t completely understand.

I want to make one point very clear – I am not a doctor. I am not a medical professional, or a rheumatologist. I am not an expert in PsA. You should always take the advice of a trusted rheumatology expert over anybody on the internet. If you do not feel you can take the advice of, or understand the explanations given by, your rheumatologist, then you need a new rheumatologist!

Your rheumatologist can be the most expert diagnostician, but if she/he cannot explain things well-enough to you, then you cannot make an informed decision. Your rheumatologist may also be wonderful in his or her communication skills, but if he or she is ten years out-of-date in PsA research and new drug therapies, then all the understanding that is provided by a warm and fuzzy, compassionate doctor loses its effectiveness because the message and treatments are out-of-date in this rapidly advancing field. Choosing a rheumatologist who is knowledgeable and responsive is essential, and unfortunately, not as easy to do as it should be.

Even reading online reviews or asking friends or other medical professionals for recommendations is not always particularly helpful because while people know if a doctor is “warm and fuzzy” (relatable) and if their office staff are responsive, efficient, and accommodating, they are not typically qualified to comment on how expert and up-to-date the doctor is in the field of rheumatology.

Also, because the treatment of PsA often requires several attempts before a drug therapy or combination is effective, laypeople often assume the doctor doesn’t know what she/he is doing because of a failed first or second treatment attempt, when the reality is that person’s PsA may just be particularly difficult to treat. This makes it very difficult to be a informed advocate in your own medical care.

We tend to seek-out doctors who are “warm and fuzzy” because it is comforting, without realizing that the complex diagnosis of this enigmatic disease is a very clinicial, intellectual endeavor, and that often the best medical diagnosticians and practioner in this complex field lack that “warm and fuzzy” personality that we, as patients, naturally gravitate towards.

Never be afraid to ask for a second opinion if your concerns are not being addressed, or if you are not even able to understand your options and their potential consequences. Don’t be afraid to say “I don’t understand what you are saying. I need for you to explain it again because my options are not clear to me.” Don’t let them rush you out of the office simply because your appointment time is up. Don’t be embarrassed to say “I have no idea what a TNF-alpha inhibitor is, or how it treats PsA. Can you explain it in simpler words so I can understand my choices?” Don’t be pushed into making a decision you don’t really understand.

The rest of this article focuses on general descriptions of the types of drugs your rheumatologist may suggest or prescribe. It is not meant to be a thorough description, but a basic, layperson’s explanation.

At the beginning, NSAIDs (non-steroidal anti-inflammatory drugs) are the first line of defense. NSAIDS are used to ease the pain and inflammation caused by PsA. They are taken by mouth (pills) or by rubbing them on the skin (topical). These help relieve inflammation, but they don’t address the cause of the inflammation. Different people respond better to different NSAIDs. NSAIDs have a high risk for GI issues, stomach bleeding, and kidney disease. Examples of NSAIDs are ibuprofen, aspirin, naproxen, meloxicam, and voltaren.

Steroids are often used, which blunt the body’s response to inflammation, but don’t slow down the progression of the disease. They are an anti-inflammatory or an immunosuppressant medication. Long-term use of any steroids can lead to bone loss (osteoporosis), especially if you are a smoker. You should not stop taking steroids suddenly, but must taper off taking them. The list of side effects with steroid use is extensive. You do not want to take steroids long term, and you need to be tapered-off of them. Drugs such as prednisone need to be carefully monitored and taken for the shortest possible duration. These drugs are great for flares ( a flare is a sudden worsening of the disease) but cannot be used long-term.

The next line of defense are called DMARDs (disease-modifying anti-rheumatic drugs.) DMARDs can stop or slow the progression of joint damage, but they do not cure the disease. Because DMARDs suppress your over-active immune system to control inflammation and slow joint damage, they can make you very susceptible to infections and certain diseases. Methotrexate is an example of a DMARD that is commonly used with PsA. Each DMARD has different specific benefits and risks. Your rheumatologist is the expert in choosing the correct drug based on your specific type and location of pain or inflammation.

Biologics are a very special type of DMARD and are prescribed when conventional DMARDs prove ineffective. These are very powerful drugs.

Biologics are harder to make, which results in them being very expensive. Insurance companies often require that many other, less expensive options be tried prior to approving a biologic. Even with good insurance, the regular deductibles and co-pays often do not apply, making them very costly to even the best-insured patient.

For example, seven months ago, I was put on the biologic Secukinumab (the trade name is Cosentyx.) I have excellent insurance with low co-pays and deductibles. My annual deductible had already been met, but biologics are excluded from typical co-pays. That meant that my monthly co-pay for this biologic was $1,650.00. You may find this hard to believe, but I don’t just happen to have an extra $19,800.00 laying around this year to spend on biologic co-pays. Fortunately, many drug manufacturers have financial assistance programs to help pay for expensive co-pays that insurance won’t cover. Some drug companies even have programs that will cover the entire cost for a set period of time if your insurance denies coverage, while you battle it out with the insurance company.

Biologics are given by injections or by infusion. Biologics may work well for one person with PsA, and completely fail for another. Sometimes, they work well for a period of time, and then, without warning, stop working. There are many different types of biologics, so if one doesn’t work, there are others to try.

Biologics are produced from living organisms, or contain components of living organisms. They use products obtained from human, animal, and microorganisms by using biotechnology. They contain substances that suppress components of the immune system.

Biologics are genetically engineered proteins. They are designed to reduce inflammation and halt joint damage. Each different type targets a very specific part of the immune system, so, for example, a different biologic would be selected for a person with joint damage in the finger joints than for a person with connective tissue inflammation.

Biologics fall into several categories based on how they function. Understanding these is very complicated, and a highly-trained and educated rheumatologist is the best expert for determining which type is needed for each individual’s PsA presentation. Each category is used for targeting a very specific source of inflammation. These descriptions are in layman’s terms and are not meant to be complete medical descriptions, or fully exhaustive in their explanation.

▸ Interleukin Inhibitors – Examples of interleukin inhibitors are Secukinumab (Cosentyx), Ixekizumab (Taltz), Brodalumab (Siliq), Ustekinumab (Stelara), Risankizumab (Skyrizi), Guselkumab (Tremfya), and Tildrakizumab (Ilumya).

▸ Selective Co-stimulation Modulator, T-Cell or B-Cell Inhibitors – An example of a selective co-stimulation modulators is Abatacept (Orencia).

▸ Tumor necrosis factor inhibitors (TNF-Inhibitors or TNF-alpha Inhibitors) – TNF-alpha inhibitors suppress your body’s reaction to TNF, a protein produced by white blood cells, that causes inflammation. Examples of TNF-inhibitors are Infliximab (Remicade), Etanercept (Enbrel, Erelzi), Adalimumab (Humira), Golimumab (Simponi, Simponi Aria), and Infliximab (Inflecta).

There are risks involved with using biologics. You can have an allergic or hypersensitive reaction. By suppressing the immune system, biologics increase the risk of infections, or diseases such as tuberculosis, hepatitis b, and hepatitis c. Some biologics interfere with the effectiveness of vaccines.

There is a huge list of possible side effects from each biologic, which has to be considered when making the decision to take them. Biologics are given by injection or infusion because they are proteins that are quickly digested, and they would become inactivated if given by mouth (in pill form.)

Combination therapy involves using both DMARDs and a biologic. PsA often involves several types of inflammation so a combination of a DMARD and a biologic are often used. It can help target a variety of inflammation issues that are very unique to each individual.

Pre-existing medical conditions, such as active infections, liver or kidney disease, cardiovascular disease, or a history of cancer, can complicate the treatment of PsA. Other medications you take can also change the way PsA medications work for you, as well as increase the types or severity of side effects.

If remission occurs, DMARDs and biologics are reduced but not discontinued. If you discontinue these, the disease will reactive later. The difficult part here is that, often, when the original drug that worked is reintroduced, the body no longer responds to it. For this reason, it is essential to continue with a successful drug on a maintenance dose even once remission has been achieved.

At the end, if you tried multiple DMARDs, biologics, and combinations, and you still are not finding functional relief, there are still options — very expensive and illusive options — available to you. These come in the form of clinical trials of new treatments and stem-cell therapy. Stem cell therapy is an emerging treatment that offers a great deal of promise for those with PsA. However, the FDA has not approved any such treatments, and all stem cell therapies are presently considered experimental and investigational.

As you can see, treating psoriatic arthritis can be a very daunting task. In my opinion, only a highly-trained expert in the field of rheumatology has the education, background, and experience to make that determination.

One of my biggest pet-peeves is when I hear a fellow PsA-sufferer say “My rheumatologist said I could try this biologic or that biologic,” leaving the patient to choose, when he or she clearly does not understand the implications well-enough to make that decision. I am all about patient choice, but in this case, I feel it is unacceptable to ask a patient, with no medical or rheumatology background, to choose, when it is so highly unlikely that the patient will really be able to make a informed decision.

Please don’t think I am saying a PsA patient is not “smart enough” to make this decision, or “capable enough” to understand something it took the rheumatologist 10+ years of medical school to learn. I personally have advanced degrees, and consider myself to be very intelligent, and yet, I know without dedicating 10 years or so to a very specific medical education, I am simply not capable of making that decision. My choice would be nothing more than a guess based on a very rudimentary understanding of the processes involved. When confronted with this type of decision, I always turn it around, and ask the rheumatologist “In your expert-opinion, which would you choose if you were the patient in my situation?”

Those of us who battle daily with psoriatic arthritis (and other auto-immune diseases) know one particular enemy by name – fatigue, chronic, overwhelming fatigue. Those without this life-altering condition, hear it called by other names – laziness, loafing, not trying hard enough, giving up, giving in, and slacking off. These are all judgmental words that show how little others understand autoimmune diseases and the effect they have on a person’s body and reasoning abilities.

The constant inflammation caused by psoriatic arthritis, the continuous battle as our own immune system attacks our cells, tissues, joints, and organs, exhausts our bodies in strange and indescribable ways. People who don’t have PsA can’t possibly understand how you can wake up after 8 hours sleep and still feel exhausted; how you can feel fine one moment, and unable to so much as lift your arms the next, or why each afternoon is met with an overwhelming fatigue you just can’t satiate.

In addition to this overwhelming, harrowing exhaustion comes another condition with an innocent-enough name, “brain fog.” Living with chronic pain overstimulates your system to the point were it affects your mental clarity, your ability to focus, to deal with stress, to respond to changes, to process information, and to accomplish the most basic problem-solving functions.

I spent my career as a teacher being able to multitask, problem-solve, change gears quickly, observe and monitor a dozen things at once, and respond without a moment’s hesitation to the changing needs and situations in my classroom. But now, a simple, seemingly inconsequential change stymies my ability to “change gears,” adapt, be flexible, or reason through even the most minimal of complications in plans. It is almost inconceivable how someone who once thrived on flexibility and adaptability can now stare hopelessly at a calendar, unable to figure out how to reschedule an appointment or remember what the name of that white powder that looks like salt, but makes things sweet, is called. Nothing in my mental intellect has changed, but my ability to deal with complications or express myself with clarity has been forever altered.

The worst part is the intermittent nature of this ineptness. Sometimes, I’m as sharp as ever, and other times, I struggle to find words that have been a part of my vocabulary since childhood. I never know, from one moment to the next, which person will be standing here – the competent problem-solver, or the confused, disorganized laggard.

The way the rest of the world reacts to our sudden, intermittent lack of clarity or adaptability is the most challenging part of this disease. People who have spent their entire lives being competent and efficient are now reduced to blithering, confused, overwhelmed individuals, and yes, it hits our self-esteem and self-worth more than anyone can imagine.

So when you hear someone with psoriatic arthritis talk about fatigue or brain fog, please know that the struggle is real. The exhaustion and muddled feeling is not a sign of laziness or inattentiveness – we are not slacking or apathetic. It is, quite simply, our body’s way of dealing with the near-constant attack by our over-active immune system.

{This post was written in response to a news article on July 3, 2020, by the NY Post about a quadriplegic gentleman who was refused Covid-19 treatment simply because of his disability. https://nypost.com/2020/07/03/quadriplegic-dies-of-covid-19-after-hospital-refuses-treatment-family/ }

As a 5th grade teacher, one topic I had to teach each year towards the end of the year was about the Holocaust — in terms a 10 year old could comprehend. As a teacher, this was a difficult subject, but I took the importance of it very seriously. For most of my students, this was the first time they had ever heard of it. This subject opens a door, that once opened, can never be closed again. It marks a very specific end of innocence. I took this very seriously.

I was very careful to not show extremely graphic photos or list unfathomable atrocities. (They would see these soon enough as they grew older.) All parents had the right to opt their child out of this instruction. I never had even one parent opt out.

I always began my instruction by telling them a little story. You see, if I had been born back then, none of the surgeries I had that allowed me to walk or live a normal life would have been available. I would have ended up in one of the many “hospitals” (warehouses, actually) for people who were disabled. I never would have walked, and I would have been a burden to my family.

The Nazis, you see, didn’t actually start the Holocaust with the Jews (although their hatred of them was absolute.) They “tested the waters” with a different population. They started with the disabled, both physically and mentally disabled, and they made no distinction between babies, children, and adults. The word they used was “life unworthy of living.”

The doctors and nurses involved were complicit, as they chose which people, which babies, which children, which adults, were worthy of living, and which were not. They did not make these choices with deep caring concern for their patient’s well-being. They were not seeking to end their “misery.” They decided, very systematically, which were a burden on society, and they singled them out, and sent them to special “hospitals” for “treatment.”

They knew it was wrong, because they lied to the families of the “chosen” people. If they had thought it was the right thing to do, why not shout it from the rooftops, instead of using lies and subterfuge? They told families that these children and adults had suddenly taken ill, and needed special treatment. They put them on buses and sent them to special “hospitals.” Then they slowly, painfully, starved them to death.

In some cases, they injected drugs to cause the end more quickly, especially with vocal, mentally handicapped people. And they even used poison gas in rooms disguised as showers, because some of the medical staff’s mental health began to suffer from the slow, tedious starvation deaths. They decided to use something quicker, not to benefit these patients and end their despair, but to spare the medical staff from seeing the slow, agonizing deaths day-in and day-out.

Then they sent false letters and death certificates to the unknowing families, claiming these “chosen” people had died from natural causes like pneumonia.

These were not ignorant, uneducated people who did this. They were doctors and nurses, many of them were the top of their class and high ranking in their profession. Many convinced themselves they were doing this for the “greater good” and the benefit of mankind.

The chose themselves as the arbiter, the decider, the judge, and the executioner. They held themselves as the authority of who is worthy of life, and who is unworthy of “wasting” resources in our society. They assigned a value to human beings, and eliminated those they felt did not contribute significantly.

This series of mass murders by the best and the brightest of their medical institutions basically went unnoticed or un-confronted by society. Many who did know either felt helpless to stop it, or actually agreed with the decisions. And this was the start of it all, this thing we call the Holocaust. There was no uprising in response. There were no demonstrations. It happened quietly and without anyone choosing to stand up and say “this is wrong.”

And so, the Nazis felt empowered, the “Final Solution” began – this time it was directly aimed at the Jews, homosexuals, Poles, political dissidents, and others deemed to also be inferior and unworthy of life.

It has never been Man’s place to decide who is worthy of living, and who is not. This is a moral issue humans have struggled with for generations. I realize it is a narrow line between the rights of majority and the rights of “hopelessly” disabled. I realize that sometimes it is a choice made with the disabled person’s best interests in heart – not wanting them to physically continue suffering, but in this situation, that was not the case.

If this had been a case of one ventilator and two dying patients, and only one could be chosen to be saved, I would pity the medical professional who had to make that tragic decision and try not to second-guess it. But that wasn’t the case in this situation. The claim that there might not be enough ventilators was a “what if” decision — a “what if we use the ventilator on him, and then another more-worthy-of-life person then needs it?”

So in this case, I question the decision that was made. I’m not reminded of the kind, tormented family member who sees their family member in agonizing pain and decides to stop artificial means of respiration. Instead, I’m reminded of those fateful years back in the 1930s, when doctors and nurses, encouraged and instructed by a political machine and one man’s blithering insanity, to decide what makes a human life worthy of living.

I’m reminded of what happens when humanity turns a blind-eye to mere humans making the choices of God and the universe.

If you read history, then you know the phrase “life unworthy of life” (in German it is lebensunwertes leben.) It was a Nazi designation for the segments of the populace which, according to the Nazi regime, had no right to live, and who were targeted to be euthanized by the state, usually through the compulsion of their caretakers. They were seen as inferior and unworthy of life, and were treated accordingly.

“Those who do not learn history are doomed to repeat it.” Make no mistake, I do not compare those medical professionals who decided that life as a quadriplegic was not life worthy of life to the Nazi regime. But I do see that slippery slope of mere mortals deciding the value of life based on their preconceived notions of who is “worthy of life,” and who is not. It is a line, once crossed, that becomes blurred beyond recognition.

I have a “funny” disease called PsA (psoriatic arthritis.)  This is not anything like “old people” arthritis.  Please don’t tell me about your grandmother’s arthritis, and how she “cured” it with liniment and a special diet. It isn’t the same thing.  PsA is not just creaky joints – it is an auto-immune disease. 

You see, my immune system is over-active, and it mistakenly attacks my tissues, joints, and organs.  It has already caused neuropathy in my feet, stiffness in my fingers and toes, inflammation and stiffness in my back and neck, a strange blurriness in my vision, kidney failure and liver disease.   It causes pain, inflammation, horrible skin rashes, and deformed joints – but there is so much more to it than that.

One thing that is fairly unique to PsA is enthesitis.   Enthesitis is inflammation of the sites where tendons or ligaments insert into the bone.  It happens in many areas of the body including your heel, knee, hip, toe, elbow, backbone, and the bottom of your foot. 

In my case, it is affecting my elbows, wrists, and fingers , which in turn, affects my use of my hands and arms.  It feels like you have “worked out too hard.”   Your arm muscles feel exhausted, and you can’t even lift your arms when it is bad.  The stiffness and immobility are worse first thing in the morning, and also get really bad after not moving for a while.  Simply sitting too long in a car, or laying down too long can cause the pain and weakness. Your arms become limp and non-functional.  

In my case, it is severely affecting the tendons in my elbows.  You may think this is no big deal, because “what do elbows do?” but you couldn’t be further from the truth.  These elbow tendons are what allow a person to grip things with their hands.

When these tendons are inflamed, you can’t hold a pen, grip the steering wheel of your car, get the lid off of a jar, manipulate a fork or a knife to eat, pick up things, comb your hair, hold your toothbrush, use dental floss, or even press down on a stapler.  This truly changes your quality of life. 

In my case, it also causes additional problems, because I use a rollator or dual canes to walk.  Without my rollator or dual canes, I get off-balance.   Right now, I can’t grip them because of enthesitis. 

I have come close to falling many times because my grip on my rollator just “lets go” and it rolls out of my hands.  When you lean on something and hold-tight to support yourself when you are walking, suddenly having it fall out of your hands is significant.  It is frightening.  It is dangerous.  I fall more often than I actually admit.  Inside, I know, it is only a matter of time before I get seriously hurt in a fall.  I am terrified of this. 

Enthesitis is also a sign of increased PsA activity in your body.  My rheumatologist has increased the frequency of my biologic, and I am already at the maximum dosage.  Only time will tell if this will help.  It needs time to build-up in my system, and may take another 3 months (or more) to figure out if this treatment will ultimately help.  Until then, most of the time, my hands and arms are basically nonfunctional. 

The pain is significant, but I can cope with that.  I have a very high pain tolerance.  What I have trouble coping with is not being able to hold onto things, and my arms feeling so worn-out and exhausted that I can’t hold them up.  What I have trouble with is not being able to walk with any stability, and my constant risk of falling.  What I have trouble with is not being able to grasp a knife or fork, which means I can’t feed myself or prepare food properly. 

Sometimes, I can’t even hold onto a spoon, mix ingredients, or crack an egg.  I can’t cut my meat, or steadily keep my food on a fork or spoon.  When my enthesitis is bad, I hide-away from the world, so no one will see me spilling water from my small, lightweight glass, or having to eat by using my fingers to put food directly into my mouth because the fork and knife are useless.  What helps?  NSAIDS, steroids, and long-term use of biologics.  Because PsA has damaged my kidneys, I cannot take any NSAIDS or steroids.  I choose not to take opioids, which would mask the pain, but wouldn’t improve my situation.  I am already on a biologic, but it can take months for it to build-up in your system.  My rheumatologist hopes that by October I should see some type of relief.  It is now the beginning of July, and October seems very far away. 

Rest and ice are my only ways of getting any relief, but even those are very little help right now.  The more I rest, the stiffer my arms become, and the more the enthesitis affects me. 

And while ice does help, when my enthesitis is acting up, I have trouble handling the ice, I can’t manage the ziploc closure on the bag or tie a knot in the bag, so as the ice melts, it drips all over me.  I can’t hold the ice on my arms because both arms are affected.  When it is in full swing, I am unable to hold the steering wheel of my car, feed myself, or even steady and lift a glass of water to my lips so I can take a drink. 

Those of you who know me, know I am stubbornly independent.  I hate to ask for help, though I do when I must.  But how do you arrange for help when intermittently your hands and arms stop working?  Some days, I can manage, and other days, I can’t feed myself.  And I never know in advance when it is going to happen.

This is the reality of PsA – intermittent, unexpected, unsettling surprises when you least expect it.  My body is attacking itself on a daily basis, and I never know from day-to-day what to expect, or what my abilities, or inabilities, will be.  How do you plan for that?

It isn’t just “swollen joints” – although that is bad enough.  It is stiffness, and swelling, and hideous rashes that make you look like a monster – rashes so severe that they bleed and itch, and basically nothing provides relief.  Conjunctivitis causes itchy, swollen eyes, and uveitis causes sudden blurriness, floaters, and light sensitivity.  Neuropathy keeps you from being able to feel your feet or toes as they deform and swell. 

Fingers and toes curl up.  Back and neck pain are almost unbearable.  And tendons become so inflamed that the entire parts of your body become nonfunctional.    That is the reality of PsA.  Why it is still called “an arthritis” is beyond me.  It is an auto-immune disease and has nothing to do with the osteoarthritis that people get as they age. 

So please, if someone tells you they have PsA, don’t start telling them about how your grandma drank apple cider vinegar or took glucosamine tablets and was “cured” of her arthritis.  Her knee replacement at age 76, while inspirational, isn’t really the same thing.  It isn’t the same thing at all. 

Originally from Michigan, I’ve spent most of my  life in Virginia and North Carolina. An avid writer, I now reside in sunny Florida.

Born with a congenital skeletal abnormality called bilateral congenital hip dysplasia/dislocation (also sometimes now called bilateral developmental hip dysplasia,) I was born without functioning hip sockets or joints.  I began treatment at the ripe old age of 24 months old. 

I’ve had a variety of procedures to allow me to walk, including multiple femoral osteotomies, acetabular osteotomies, a PAO, fractural lengthening/release of paoas tendons, bone realignment, notching procedures, bone spur removal, multiple bone grafts, avascular necrosis repair, and two total hip replacements.  Right now, I’m waiting on a hip revision to repair my 24 year-old right hip replacement, which has worn out. 

I’ve run the gambit when it comes to mobility.  I’ve walked with a limp, a waddling gait, and Trendelenburg gait.  I’ve had braces, body casts, and more surgeries and treatments than you can imagine.  I’ve had to use canes, dual canes, hiking sticks, crutches, walkers, rollators, and now, even an electric cart to get around. 

Throughout my life, I’ve had many physical challenges.  Severe muscle weakness and atrophy in my legs, and limited abduction are the biggest issue.  Multiple surgeries in the same areas have left me with nerve damage, and spondylitis has left me with a balance impairment.  But then,  about ten years ago, I started having some medical issues I simply couldn’t explain. 

First, came some very strange rashes.  My balance became more affected.  I started feeling a numbness in my hands and wrists.  I honestly thought that was because I use a rollator, and that puts so much pressure on your hands and arms.  It made sense, so my doctor and I didn’t explore it further.

I began to have generalized weakness in my legs and core, and much greater difficulty in walking or standing.  That isn’t so unusual for someone who has had so many surgeries.  My doctor sent me to have some more physical therapy.  It helped a little, but then it quickly faded, and the problem reappeared with more veracity. 

Then came the fatigue.  No matter how much sleep I got, I had trouble staying awake during the day.  We even looked into seeing if I had narcolepsy, but I didn’t have that.  Even if I went to bed at 8:30pm, I was still exhausted the next day.  The exhaustion never went away.

Again, we explained it away.  I was working full-time at a very demanding job and caring for my father, who had Alzheimer’s.  We assumed that was the cause of my exhaustion.  Truth be told, I was so busy taking care of my father and all of his medical appointments, that I started neglecting my own medical care.  I’ve paid a very heavy price for that.

Last year, after my father passed away, I moved to Florida, and just weeks after I got here, my medical issues became so intense that I could no longer avoid them.  My hands kept “freezing up” as I slept.  My fingers curled and were stiff and swollen.  I assumed this might be rheumatoid arthritis, because my mother had RA.  My back and neck became stiff.  My exhaustion made it almost impossible to do anything.

And then one night, I got up to use the restroom, and my back was “frozen.”   I fell, and ended up in the hospital.  The next weeks and months were a whirlwind of finding doctors in my new home state, getting in to see specialist after specialist, as we tried to figure out exactly what was wrong.

Some of the treatment helped a little, but it was all “hit or miss” since we really didn’t know exactly what was wrong.  After a seven month wait, I finally got in to see a rheumatologist. 

After reviewing all my medical records and history for the past twenty years, running dozens of x-rays, ultrasounds, bone density scans, and more labs than anyone can imagine, my rheumatologist knew exactly what was wrong.  I didn’t have rheumatoid arthritis.  I had a fairly uncommon autoimmune disease called psoriatic arthritis (PsA.)   My doctor felt I’d had this for at least 15 years.  It isn’t uncommon for PsA to be mis-diagnosed becasue people look at the symptoms and never put it all together to see the disease.

The PsA didn’t come alone.  It brought with it diabetes, high cholesterol, high blood pressure, kidney failure, liver damage, gallstones, connective tissue disorders, enthesitis, crippling arthritis in my fingers and toes, neuropathy in my feet, spondylitis, psoriasis rashes, thinning hair, dry, itchy eyes, blurry vision, dry mouth, mouth sores, inflammation, and stiff, swollen joints.    Some of these are symptoms of PsA, while others are co-morbidities.

I never in my life thought I’d wake up “sick” one day and find out that I was never going to recover.  That is the reality of chronic autoimmune diseases like PsA.  There are some treatments, but there is no cure. 

So that is what this blog is about – my journey through living with a lifelong disability coupled by a chronic disease.  This may sound discouraging and overwhelming, and truthfully, sometimes it is, but this is also the story of hope, determination, and forging a new life in the face of adversity.

I hope you will become an active participant in my story, by leaving your comments and sharing your frustrations and your uplifting experiences.  As my grandmother used to say, “A burden shared is a burden halved.”  Let the sharing begin! 

Starting a blog is an idea I’ve thought about for a while. I enjoy sharing my ideas and experiences with others. I realized the therapeutic power of writing as far back as 4th grade. It is a format that has served me well throughout my life.

I especially want to thank my friend Leeann for encouraging me to start this blog. The support of friends is what makes life worth living.

And so I begin. I hope you enjoy the show!