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.***

Cover the Mirrors, Don your Black Threads....

My family is in mourning, but no one knows. We are fortunate that we haven't lost a loved one. What they mourn is life as we knew it just a short year ago.

Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.

Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".

I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.

So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.

And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.

Chronic Pain is Not a Symptom

I can remember a few years ago when I thought I understood chronic pain. Simply put, chronic pain is any pain that lasts more than six months. But when it happened to me, I responded in typical manner by researching chronic pain to better understand.

It was then I realized how shallow my understanding really was.

For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.

I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.

Effects of chronic pain are well-documented:

Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.

Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.

I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.

I am very lucky that my rheumatologist knows the secret to compassionate treatment of RA and its sister Chronic Pain. I'd say that I wish she could share this secret with other docs who treat RA patients ... but that would be wrong.

Her secret is that she has RA.