Friday, October 18, 2013

Fill 'er up!

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.

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