Month: March 2021

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.