Wednesday, December 9, 2009

Living with RA: Getting Worse AFTER My 1st Diagnosis

*** This post is part of my Living with Rheumatoid Arthritis series.

The alarm clock went off, signaling the beginning of another day. I slowly climbed out of bed and shuffled down the hall of our second floor apartment to the bathroom. There, I turned the shower on as hot as I could tolerate and let the water wash over my inflamed joints. The heat usually helped take away some of the stiffness.

4 different medications and two and a half years had passed since my first (unspecified) diagnosis of arthritis. I couldn't deny to myself that my disease was worse. A growing list of things I could no longer do made that clear:
  • Unscrew a grape juice bottle for the first time.
  • Unscrew a pickle jar lid that had previously been opened.
  • Peel a potato with a knife.
  • Quickly descend a flight of stairs.
  • Stay awake passed 8 PM.
  • Open my mouth wide enough to bite into a hamburger.
  • Get up off the floor by myself.
  • Squat down to talk to a child.
  • Kneel on the floor.
By this time Joel and I had been married for 3 years and I wanted to start having children. But I was afraid. Questions filled my mind:
  • How could I care for a baby all day alone when I couldn't screw on the lid of a bottle?
  • How I would I tie a toddler's shoe or zip up a coat when I couldn't kneel or squat?
  • How would I keep up with an energetic preschooler when I was sleeping 8-10 hours a night and napping 2-3 hours in the afternoon and still felt exhausted?
In the spring of 2000, relief for my pain and answers for my questions came about in the oddest way.

Because of severe TMJ, my dentist sent me to an oral surgeon. The oral surgeon just happened to be knowledgeable about the different kinds of arthritis. After examining my jaw and seeing the joints in my hands, he suspected I had Rheumatoid arthritis, NOT osteoarthritis, the most common form and what athletes and seniors get.

He scolded me about not seeing a rheumatologist (a specialist in the field of arthritis and related diseases). He also explained that I probably had RA, which affected my immune system and needed very different treatment than osteoarthritis. He even went so far as to call my primary care doctor and tell him I needed to see a rheumatologist!

On the next visit to my P.C., he handed me a referral to a rheumatologist in my area.  And that was that.

Once again I had hope that the pain and fatigue would go away and that my "Can't Do" list would become a memory of the past.

Disclaimer:  I am not a doctor nor do I pretend to be one on TV.  This post is intended to tell my experiences NOT to serve as medical advice.  If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments). 


Carrie said...

Again, it's very interesting and good to hear your journey. I can't imagine going through all of that in the first three years of marriage!

Wherever HE Leads We'll Go said...

How neat that God used an oral surgeon to set you on the right path. He loves to do things in a way that we would never expect!

Flamingo Mama said...

wow stephanie! just getting caught up in reading your story now! i know nothing about RA really so this is fascinating to me. It sounds terrible though!! Thank goodness for that oral surgeron! I want to call that primary dr myself! He should know that 20 year olds don't USUALLY get "regular" arthritis!

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