Wednesday, September 14, 2011

9/11, Heroes and Me

I have been thinking a lot the past few days about the heroes of 9/11.  I am awed by the hearts of those who ran into the WTC and those who stormed the cockpit of Flight 93.  I can only hope that I would show such grace and courage if given the opportunity to save a life.  I admire the heroes who choose service to others as their life's work - fire fighters, first responders, police officers, military men and women - and I admit that I don't have it in me to serve in one of those careers.

But I am learning to give myself a little more credit for a different kind of courage.  The quiet kind of courage that those of us with chronic pain and incurable illnesses show in somewhat smaller ways every day, simply by doing what has to be done, continuing to live life, getting on with it.

Don't sell yourself short: it takes courage to choose medical treatments that make you sick in hopes that disability will be stalled and others won't have to care for you; it takes a unique kind of bravery to give yourself injections, swallow those pills, go for infusions when you know the side effects will soon follow.  It requires a brave heart to pretend that you aren't frightened by the statistics - that the average rheumatoid arthritis patient's life is shortened by 10 years- or by the facts - that any simple infection could be life-threatening, or that in spite of all your best efforts, you could be living life from a wheelchair.

Some days, it takes the heart of a lion to rise from your bed, take your pain meds, and fight to have a "normal" day.  It would be so much easier to succumb to the depression, the pain, the fatigue.  But what kind of life would that be?  It takes heart and strength and bravery to live a life painted with fear and pain and loss.

So, let's give ourselves a little credit - we may not be heroes ... but then again, maybe we are.

Thursday, September 8, 2011

Just Checking In

This week I haven't blogged because I was so very busy feeling sorry for myself (see prior blog posts).  All better now.  Self-pity has its place, but quickly becomes boring for me.  And the imminent 10th anniversary of 9/11 helps to put my little problems into perspective.

Hopefully I'll soon hear about starting my antibiotic therapy for preventive TB treatment (see prior blog posts).  I'm ready to get that over with, but it has to be run through the state health department, and as we all know the wheels of bureaucracy grind slowly...

So, I have a big day tomorrow.  Rheum appointment so she can assess how I'm doing off meds,  then an MRI of my hands and wrists because they are looking & feeling a bit wacky to my doc. 
I may even have lunch out if I still feel like it after lying in a ginormous banging magnetic tube for 1 1/2 hours.

Ah, the retired life ... who needs hobbies when you have rheumatoid arthritis?  

Hope you're all well.  I'd love to hear your favorite MRI story! 

Thursday, September 1, 2011

Another Star in the AI Hemisphere

Venus Williams, a world-class professional tennis star, made headlines when she announced yesterday that she was pulling out of the US Open in the second round.  She started an absolute media frenzy when she published a statement today that she had to bow out of the tournament because of Sjogren's Syndrome, an autoimmune disease that shares some symptoms with RA and is often a secondary diagnosis for patients of its more debilitating cousins like Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis.

I don't want to play "who has the more serious AI disease" - I imagine a diagnosis of SS, especially for a professional athlete, is equally crushing as a diagnosis of RA.  Both are incurable, both can be extremely damaging, and both can be extremely difficult to manage.

I hope for Venus treatment is quick and effective.  I hope her SS is not a portent of other, more dreaded AI diagnoses on the horizon, as it is for so many.

I also hope, quite selfishly, that the buzz in the media brings a little desperately-needed attention to the plight of those with AI diseases, which are often "invisible" for years until their dirty work becomes apparent to the casual observer.

I hope that valid, factual information about AI diseases will find its way into the national consciousness.  We can hope that before the media loses focus, opportunities for dialogue will arise and advocates for the AI community will have a moment to speak.

There have been many public figures who have chosen not to share their private pain, and I respect their choices.  There have been some who have chosen to share their carefully spun stories to sell books or new pharma products, and I don't particularly respect their choices.

The autoimmune community needs our Michael J. Fox, someone who can capitalize on his fame to shine a light, educate, and advocate for research into the origins and a cure.
I hope that Venus Williams, this beautiful, talented, articulate woman, feels compelled to be our advocate.  I guess you could say I'm wishing on a star.

Ever Feel Like a Big-headed Boy?

My regular readers may remember that I have slogged through a month of indecision and frustration, finally reached a decision, only to be trumped by recent lab results (showing liver damage) that demanded I do what I had just grudgingly decided - start a new treatment for my rheumatoid arthritis, in spite of scary(er) side effects.

Here is the latest installment of the soap opera that is my life with RA ...
Part of the preparation for beginning treatment with biologic drugs is to have a TB skin test.  The drugs slam your immune system so effectively that if you have a smoldering infection, it can blossom into a life-threatening situation.  Many healthy people who are exposed to Tuberculosis carry a little capsule of TB that their immune system has effectively imprisoned, rendering it harmless.  So, in the better-safe-than-sorry approach, TB tests are performed to rule out the danger of creating an active TB infection by compromising your immune system.

You have already jumped ahead, haven't you?  Yep - you guessed it.  My TB skin test is positive.  That doesn't mean I actually have TB, it just means I have been exposed sometime in the last 6 decades.  In the past week I have learned (a bit late, eh?) that travel to Mexico, volunteering with at-risk populations (HIV, homeless) and simply living in a state that borders Mexico are all risk factors for exposure.  And that active tuberculosis cases are on the rise in the US.  Good luck trying not to obsess about this the next time someone coughs on you at the grocery store.

So, all RA treatment is on hold.  As the methotrexate wears off, I'm living on pain pills for the increased pain, carefully limiting my activity to avoid triggering a major flare, sleeping a lot as my fatigue increases.  I have my trusty prednisone taper for backup if things spiral out of control.  I'll begin 6 months of antibiotic treatment next week, and at about 6 weeks my rheum will begin to monitor labs to determine when I can start my biologic treatments.

So today I was reading the side effects of the antibiotic meds I'll be taking.  The number one side effect is liver damage.  Wait, that sounds... isn't this what... what the hell?

Ah I see, it's a big cosmic joke.  On me.  But, where is the punchline?  Now I know how Charlie Brown felt about Lucy and that damned football.