I've been studiously avoiding recent mention of my RA. From the time of the diagnosis in late June, the subject has consumed me on so many levels. I wanted to cut my readers/friends--and myself--a break.
A sudden setback changed my mind. Besides just being a way to vent any fears or frustration, I would hope that my adding my words to those of others might add to an atmosphere of encouragement, and promotion of research for eventual cures.
After a brief symptom reprieve, my initial medication regimen ceased to be effective. So, after consultation, meticulous documentation, and submission to the insurance company, my angel-in-the-white-lab-coat, Dr. La, has now got me on Remicade. He began by giving me the educational pamphlets on this and Humira. One option was to go with a biologic with which I would inject at home, a choice I quickly rejected. My hatred of sticking any needles into myself goes back to my days in a high school summer science class, when we were asked to poke our fingers for a lesson in blood typing. My lab partner had to do the deed for both of us. When I went home and told my mother, a nurse, about what happened in school, she scoffed, and called me "a baby." Yup, Mom, and that's why you became the nurse in our family, and I pursued another path. To this day, I cannot look when I get a vaccination or any thing similar. In fact, I couldn't even do this when I took my son for any of his many pediatric appointments.
Yesterday, after my last client, I went for my first infusion. Ushered into my now-familiar rheumatologist's office, I was shown to a quiet nook away from the main corridor of exam rooms. I had my choice of either of the two cushy leather recliners behind the privacy curtain. Since this was a two-hour procedure, I had brought a book, and was relieved of my handbag. After a check of my temperature and blood pressure, I was given a Benedryl and a Tylenol, to prevent any negative effects. The doctor himself came out, asked if I had any unanswered questions, and encouraged me to signal at any time if I felt any discomfort of any kind. Then the doctor inserted the IV himself, which was the first time I had ever had an MD doing this, rather than one of the nursing staff. Then the foot rest was put up for my comfort, and I was even tucked in with a light blanket...so reassuring was my care.
To pass the time, I chose to bring my latest leisure read, Haldol and Hyacinths: A Bipolar Life, by Melody Moezzi. This feisty new memoir is something I highly recommend to anyone who is familiar--personally or professionally--with this disorder. Even with the Benedryl buzz, I was able to read at a respectable pace. At one point, however, my head snapped up, and I began coughing. I'd probably dozed off, and "swallowed wrong." A nurse was there in a flash, asking if I needed anything, like water. No, I was okay... And so, before I was even eighty pages into the book, the IV was spent, my final BP reading was taken, and I was given an order for a lab test before my next "refill" in a couple of weeks. Mission accomplished. All A-OK.
Once I was home, I called it a night early. This morning, I immediately checked out my hands and wrists, and have done so throughout the day. Just as I shared with you a few months ago after my first round of dosing, I have noticed a dramatic difference in the way I feel, and yet, also recognize the possible role of hope that a treatment will be effective. One thing I've learned is that I have to keep an eye on my response to emotional stress; any negative mental energy ripples through my bones like a tuning fork.
Coincidentally, my latest issue of Arthritis Self-Management was in my mailbox when I arrived home. Of particular interest in this very practical magazine is an article, "Choosing Home Exercise Equipment." I've been wondering just what I will do with those eight-pound hand weights I used to so easily heft over my shoulders in the quest for toned upper arms. Swap 'em out on Craigslist or Freecycle for some less heavy, I guess. The stationary bike is again my friend; recently, I've been able to dial the pedal resistance back up as I watch my recorded TV shows.
Another must-read article is "Getting the Support You Need." At the top of one page, one can see this highlighted passage, "BenefitsCheckUp, a free service from the National Council on Aging, can help you find government programs for which you may be eligible." This, and the cover feature, "RA in Young Adults: Social Relationships," reminds us that this disease cuts across demographic lines and calls for more aggressive funding for research.
As we head into a weekend, I wish everyone well.