A Surprising Decision

I have always been a bit of a contrarian.  Those who know me realize it's a pretty ingrained character trait (or some would say a flaw).  Conformity and acceptance just don't come naturally to me.

But with my medical treatment for Rheumatoid Arthritis, I was uncharacteristically subdued and compliant that first year.  Virtually everything I read or heard urged me to aggressively treat with the latest, most effective drugs.  In theory, this should protect me from joint damage in 8, 10 or 15 years.  Then, when I was completely disabled by medication side effects,  I read this blog post by one of my RA heroes:  http://www.rheumatoidarthritisguy.com/2011/05/to-medicate-or-not-to-medicate-that-is-the-question/

It was so refreshing to me to read that someone else felt their body rebelling against the medications, especially since I was spending about 3-4 days a week in bed with side effects from max dose Methotrexate, daily Prednisone and NSAIDs at the time.  Maybe that blog post planted the seed, or at least nudged the contrarian in me.

Before I thought it through to a decision, fate made the final choice.  After 10 years of self-medicating with NSAIDs before my diagnosis, NSAIDs of all types (even over-the counter doses) became an exercise in self-punishment; doubled over with stomach pain, unable to eat, I gave them up after dire warnings of permanent damage.  Sick to death of the Prednisone anxiety, insomnia and hypertension, my rheum and I mapped out a taper schedule to get me off the steroids.   Methotrexate alone was not cutting it; we discussed biologic medication options.  Just as I was finally thinking of adding Cimzia, my liver enzymes went off the charts on my bimonthly labs ... bye-bye Methotrexate.  In my panic at the thought of going backwards, I agreed to start Cimzia. Then a week later, my TB skin test (just a formality for biologics therapy, right?) was positive.  Now I had to undergo a 6 month period of antibiotic treatment to be eligible for biologics (I'm halfway through that now).

Two interesting things came out of this confluence of fateful events - I was forced to accept and learn to live with my increasing daily pain, and I found my inner contrarian again.

Losing the NSAIDs was not a huge deal while I was on daily Prednisone.  Tramadol works for me to reduce pain (it doesn't work well for some), so that helped.  Tapering off Prednisone was much tougher - after tons of aches, pains, increased stiffness and a doubling of my Tramadol dose, I made it.  I now use Prednisone in short tapered bursts to manage disease flares.

How do I live with my increased daily pain?   I have learned to understand my triggers and be respectful of those boundaries.  I don't try to push through a flare.  I don't overexert myself, even when I really want to.  I accepted the fact that I can't work, even part-time without spiraling into uncontrollable disease from the everyday stress and required consistency.  I accepted medication and therapy for my anxiety, stress and depression.  I have learned to ask for help, and to accept it when it's offered.

What part does my inner contrarian play?  She tells me to trust my gut.  She reminds me that, although the common wisdom is that toxic drugs delay joint destruction, science has yet to prove it.  She urges me to balance quality of life NOW, TODAY against future risks.

The bottom line?  I will finish my TB treatment.  And after that, I will resist biologic therapy as long as possible.  I will reassess my choices as needed.  But I will not spend 3-4 days a week in bed from medication side effects as a tradeoff for the uncertain promise of delayed joint destruction.  I will look at the big picture, and make my decisions accordingly.  And I will continue to blog about my experiences, hopeful that my story can help someone else feel less alone.

***Please don't read this as advice!  This is a chronicle of my personal journey and choices.  I consult my doctor when making these decisions and you should too.  My disease is moderate, and other factors such as my age at diagnosis, my overall health, my lifestyle may not apply to you and your uniquely personal situation.***

New Year News

There is such a feeling of promise in the first days of a new year.  In the infancy of each new year we make resolutions; put away our holiday decorations; plan for spring break...whatever your new year rituals are, you are probably practicing them now.

In retrospect, I find that last year I failed to achieve some of my biggest goals for 2011.  Circumstances beyond my control prevented me from getting the upper hand on my disease, and I let it defeat me - I let it keep me from truly enjoying the good days (sometimes weeks!).

So my only resolution for 2012 is to live more in the moment.  I resolve to put the bad times in perspective and only let them rule in the moment.  I'm feeling pretty optimistic that, in spite of how my medical situation proceeds this year, I can still make it a good one.

I'd like to thank each and every one of you who has encouraged me as I chronicle my journey.  There have been times when your comments and compassion have been the light that helped me find my way.  Tune in if you can ... I'll try to keep it interesting, and I love to hear how you're doing too.