Healing: How Not to Get PR for Your Website, or Palindromic Rheumatism and Me

My 2014 seemed to be the year of music.  I saw more concerts last year than any other year.  Every trip included a stop at a record store. It was also a year in which my life changed.

Of course, this change started on the day we were going to a concert.

I woke up early morning with pain at the base of my index and middle finger of my right hand.  I work with computers so I assumed it was carpal tunnel syndrome. That evening we were on our way to Gulfport Music Festival.  On the drive, my hand began to throb and it was slightly swollen.  By the time we were walking to the show, my hand looked deformed.  I tried not to complain, because 311 was performing and my wife was looking forward to it.  The Gulfport Music Festival might not get the biggest names but it’s a fun festival.  However, this night it was pouring.  When we got to the show, lightening was everywhere.  The show was stopped and eventually cancelled.

My hand hurt all this time.  We went to sleep.  At 5 a.m., I woke up with tears in my eyes.  I seriously thought my hand was broken.  It was the size of a grapefruit.  I got some Tylenol and some ice and tried to rest.  As the day progressed, my left hand started to hurt and swell.  Now, I was confused.

When we returned home it wasn’t as bad, yet I went to urgent care.  They gave me steroid treatments and suggested I see an orthopedic. The orthopedic did x-rays and saw no damage.  He claimed it was tendonitis especially since I worked with computers.  He did rule out carpal tunnel syndrome since it was on the top part of my hands.

I had minor hand pain during the summer.  Shoulder pain also developed in the summer but I’m a side sleeper and I just thought that triggered a pinch nerve.  It continued while we were in Scotland and Ireland, but we were sleeping on extremely uncomfortable dorm mattresses.  I assumed that was the culprit.

August was wonderful.  No instances of pain in my hands or shoulders occurred.  September and October were the cruelest months.

One Friday morning, I was experiencing plenty of pain in my hands.  It was so bad I could only sleep on my back because any pressure was bad.  By Sunday, my hands looked horrible.  I went to urgent care.  Again, they gave me steroids and suggested a rheumatologist this time.

I explained to the doctor my problems, but the steroids made the issue disappear.  However, the urgent care doctor urged me to take pictures of my hands before the medicine kicked in.  These pictures were objective proof for my rheumatologist to order tests.  The tests came back negative for lupus, but my white blood cell count was elevated.  However, the steroids could still be masking the problem. His educated guess was Palindromic Rheumatism.  This is a form of Rheumatoid Arthritis but it “comes and goes” hence the use of the word palindromic.

By Friday, my hand and my right shoulder were killing me.  In fact, the shoulder hurt the next month.  My hands, either both or alone, were in constant pain with some slight swelling.  Eventually, my ankles, elbows and my knees joined in the chorus of pain.  However, it was all over the place.  It felt as if someone had a voodoo doll and was pricking me in a different spot every single day. While most of the time, I would start hurting at night leading to uncomfortable sleep, once, in Dallas, it affect my foot during dinner.  At night, I couldn’t walk on it.   It was so bad that, Cristina had to attend doctor visits with me to aid me.  She also bought me a cane.  The doctor waited two weeks and ordered another blood test.  This time my Sedimentation Rate and my C-Reactive Protein were above of the standard range.   A nuclear test of my joints was ordered.  That showed my joints had little damaged, which is fantastic news.  This, along with the problem of the moving pain, led my doctor to go with Palindromic Rheumatism (PR) as the diagnosis.  However, the medications for PR and Rheumatoid Arthritis are basically the same so the diagnosis is more for academic reasons.  This how is not what most people think of as arthritis.  This did not develop because I’m old or because of wear and tear. It just developed.  It may have been the result of a viral infection back in the spring.  It could be because my family has a history of this and other auto-immunne conditions.

I was started on hydroxychoroquine, which was originally developed as a anti-malarial drug.  I was also prescribed Naproxen for the pain.

This is a autoimmune condition that I will have to live with for the rest of my life.  The medications do seem to be working, and I seem to be in remission.  However, I’ll have to take this, or some form of medication for the rest of my life.  One of the next level drugs is a chemotherapy drug that many RA patients have to take, in low doses, for the rest of their lives.  Palindromic rheumatism turns to rheumatoid arthritis in nearly half the cases.  I have had a few days with pain since the medicine kicked in, but nothing like I was experiencing all of September and October. In fact, the pain that I have now, makes me realize exactly how much pain I was in a couple of months back.

The worse part right now is the fatigue.  I’m tired all the time.  Doing events such as Comic Con and the Renaissance Fair take a lot out of me. I need to rest.  I sometimes need my cane just to move to help with my waning energy levels. The best explanation of what it is like is the spoon theory, which is a good read for anyone who knows someone with chronic pain.

Of course, I want to turn this into a positive.  I still go to comic conventions and Renaissance Festivals.  Nothing will keep my going to Record Raid tomorrow.  Coffee has helped greatly.  Of course, I’m going to start a collection out of this.  I want to collect walking sticks and canes. At Renaissance Fest, I got a nice walking wooden walking stick with a wolf carved into so I can cosplay as Maester Luwin.  I want a Riddler cane, a Willie Wonka walking stick, and others to cosplay.  It’s a good thing too, because the recent New Orleans Comic Con exhausted me.  I took three naps the next day, and ran a very low-grade fever two days after.  Cristina and I look at it as a paradigm shift.  The normal has to evolve into a new normal.  We have a trip planned that requires a lot of walking, and we will literally take it one step at a time.

I joined a couple of Facebook support groups, but quickly realized that I didn’t need it.  In most cases, it was people ranting about people not understanding how painful and life-altering this condition can be. Then I realized I don’t have that problem.  I have a great support system of family, friends, and co-workers.  They took the time to learn about this condition and took my pain seriously.  I did try to hide it, but I have a terrible poker face apparently. What is truly great about them, and this started with Cristina, they know the difference between helping and enabling.  This, by the way, includes my students.  I’m truly a lucky man.

I wasn’t sure if I was going to write this blog.  But it does affect the way I cook now.  I carved a turkey recently and my hand hurt for half hour after.  So cooking will change.  Of course, travelling has to change. We can’t do it as fast paced as before.  That might not be a bad thing as well.  Eating has to change even though there is no real diet for PR and RA patients.  However, if I weigh less that is less pressure on each joint.  In other words, cooktraveleat.com has to change for me.

But, if I have anything to say about it, not too much.

13 thoughts on “Healing: How Not to Get PR for Your Website, or Palindromic Rheumatism and Me

  1. My RA started out exactly like yours with the same diagnosis of palindromic rheumatism. I was on hydrochloroquinine for approximately eight years with only occasional flares. I graduated to moderate RA with a recent major flare and had to add prednisone and methotrexate, which is not working optimally so far–I’m holding out hope, though. You will win half the battle with your positivity. Live each and every good day to the absolute fullest, and I wish you many, many good days.

    Like

    • Thanks for the good wishes. And thanks for not making me feel alone. Going through the process sometimes I thought I was crazy because i knew i was in pain but didn’t know why. It’s easier to prepare to win when you know who your opponent is.

      Liked by 1 person

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