Month: August 2020

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!