Tuesday, October 18, 2011

Sometimes the Clearest View is from the Valley

We all have them - peaks and valleys.  The natural ebb and flow of life's geological journey.  I have definitely been in a valley (Grand Canyon?) for the last 2 1/2 months.  (For new readers,  Methotrexate was damaging my liver, the standard TB skin test to begin biologics was positive, and while I wait for the state health department to process protocols for my doctors, I am between meds.) 

Interestingly enough, being completely off RA meds long enough for my body to recover its natural state has resulted in a bit of clarity I haven't experienced since before my diagnosis. 

I'm still taking daily pain medication, but it is the mildest of narcotics, so I don't suffer fuzziness or lethargy from that med, like I did with Methotrexate.  As each day passes, I can literally feel a slight difference as MTX exits my system - yes, every day brings a bit more pain, spasms, stiffness - but also a clear-headedness and focus I had lost has returned, and surprisingly I have more energy.  Having tapered off Prednisone in early summer, I am no longer anxious, ravenous, and grouchy like I was the entire 9 months of Pred therapy.  As the fog of side effects clears, I have come to realize what a hot mess I was on these combined drug therapies and while they helped with symptoms, they by no means led to remission.

At this point dear reader, you might expect me to suggest that others might also benefit from a medication vacation.  I hate to disappoint, but that's not the theme of this post at all.  We all know that trying to manage RA with pain meds and the occasional steroid burst will do nothing to stop the march of destruction - we need DMARDs and biologics to slow the damage.

What I have come to realize through this forced halt in therapy is this:  I have been a poor steward of my own body.  When I was finally diagnosed, after years of symptoms and the all-too-common disconnected treatment of individual episodes, I was only too eager to take the meds I was prescribed.  I am ashamed to say that I was so miserable by the time I got that first prescription, I never researched the side effects of long-term prednisone therapy - until I started feeling them.  I jumped at the chance to start Methotrexate in hopes of getting off Prednisone.  I never really practiced the caution I should have when taking a drug that is known to cause liver damage (I test positive for autoimmune liver disease, so it should have been a priority to recognize the signs before my 60-day labs told my rheum I was in trouble.)  It is our responsibility to be informed and aware about our drug therapies, even when we desperately need relief.

Things happen for a reason, and I guess I needed this mini-crisis to bring clarity for me.  Although I hope that every one of you can reach this state of clarity, I certainly don't recommend the path I'm on.  Trust me, you do not want liver issues, to be reliant on pain meds to accomplish activities of daily living (read wiping your tush), or to have the state health department interject itself into your treatment plan.  But I hope each of you can take away this moral from my story:  RA treatment is a science experiment ... literally.  Be informed before you put a new drug in your body; be conscious of your body's signals; don't just accept side effects if other therapies are available; don't assume that everything you feel is an RA symptom.

Because so few of us achieve remission, we struggle for balance in our treatment and balance in our lives.  And the only person who can define a proper balance is you.  I have accepted my disease, I understand my options, and I am now better prepared to define my personal balance.  I hope each of you can find that for yourselves.

How do you balance your treatment options and overall wellness?

Friday, October 7, 2011


Missing in Action ... that pretty well describes the past month for me.  We've had a serious family illness/surgery, I've been swamped with doctor's appts, and I have floundered so much mentally and physically with my RA that I didn't feel I could make a meaningful post - I am in a difficult transition period between treatments, and really don't know what to think, so why record *that* for posterity.  :p

Today marks one year since my "official" diagnosis with Rheumatoid Arthritis.  I think I'll mark this day by noting some interesting things I have learned in the past year:

*There are people out there who understand.  One of the best things that happened for me this year was finding the RA community on the internet.  Having that outlet and information resource has literally saved my sanity in a world where the public (mis)conception of RA is that we get aches and pains in our joints, pop a pill, then go out and buy a new pair of red high heels.  I have learned so much more from my fellow RA patients than from my doctors, and so much more from my doctors by asking the right questions because some who have traveled this road before me shared their experiences.

*I can do anything (I vaguely remember believing this when I was in my twenties, before cynicism reared its ugly head.)   There is something to be said for being forced to reinvent yourself.  Many of my favorite activities are out; chronic pain and fatigue severely restrict my social life; doctor's appointments, procedures and medication side effects keep me from traveling unless it is planned with military precision.    The mental exercise of prioritizing and adapting has been good for me, and I now know that there is nothing I can't do if I want it badly enough - kind of a psychic cleaning of closets.

*You must be your own advocate.  RA treatment is ever evolving; doctors can be behind in the latest research & treatments; factions in the medical community can disagree.  Experiencing my first year of full-blown RA has made me fully realize that this is my body, my disease course, my treatment choices, and it's okay to question, to research for myself, and to go against the grain if it's in my personal best interests.

 *RA is not a death sentence (unless I let it kill my hope, strangle my independence, bludgeon my zest for life - then I might as well be dead.)  It's natural to be depressed sometimes and I know there will always be good days, bad days and occasionally very bad days.  But each day is an opportunity to choose how I will live that day and I value the good ones even more than before.  I will make good use of the good and I will get through the bad.  I will not let fear of the future prevent me from wringing everything I can out of a good present.

*The reason wisdom comes with age is because mortality puts things in perspective.  For the first time in my life, I can actually see my reduced life expectancy and potential disability from where I stand.  Take my word - that puts things into crystal clear perspective for you very quickly.  No time to waste, I now know what's truly important.

*Next year will be better.  See all the above. 

Here's wishing all my fellow travelers Love, Hope & Joy.  Don't sweat the petty stuff (and don't pet the sweaty stuff).