CHRONIC TONIC posts on Thursdays at 7 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.
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Today's diary by: andsarahtoo
Be sure to visit the Thursday Night Health Care Series: We Lost An Angel
It pleases me to announce in this forum that my lupus has been pronounced Well Controlled. Last week, my doctor and I discussed the fatigue and weakness I’ve been experiencing; she frowned over my last few rounds of bloodwork and pronounced those symptoms Not Lupus. She said there was a slight possibility that it could be a rare side effect of plaquenil, and she turned out to be right—after a week without it, my energy levels have returned to an almost normal level. If I continue to improve, I think there’s a strong possibility I could hear the magic word—REMISSION—within the next thirty days. So, on the cusp of that achievement, two and a half long years in the making, I wanted to use this space to celebrate what went right.
The first thing that happened when I started to recover was that I found a Good Doctor. My rheumatologist believed me, believed in me, and committed herself completely to helping me to get better. I have talked to a lot of people who don’t have the kind of doctor I do—they have doctors who want to treat symptoms rather than causes, or think patients exaggerate pain, or hear only what they wish to hear when the patient speaks. My doctor walks into the room for every appointment, looks at me and shakes my hand. She listens before she examines. She asks questions and doesn’t seem to mind if she doesn’t get the answers she was hoping for. She requires her office staff to be relentless in scheduling tests and retrieving records for her patients—so relentless that I believe the phlebotomist next door might be afraid of her. What I know is that it made all the difference in the world to find a doctor who would listen and commit—someone who wouldn’t get bored and ask me if I was depressed when treatment wasn’t working as it should. I had to fire a number of doctors in order to get here, but I got what I needed in the end.
Just as important as the support of a Good Doctor is the support you get at home. In April of last year, I was fortunate enough to meet the Right Guy. Love creates its own endorphins, of course, but I receive unbelievable support from the Right Guy. On the days when I felt good enough to do something, he cheered me on; on the days when I couldn’t get off the sofa, he said he was glad I had gotten some rest. On the days when I cried out of frustration and pain, he assured me that things would get better. He did dishes and laundry. He unpacked most of my stuff when I moved in. He called home and emailed from work to see if I needed anything. He grocery shopped and wrangled my kids and listened to me vent and generally made healing possible. Having been in a very different kind of relationship when I got sick, I will never be able to tell Right Guy exactly what he did for me. But I am convinced that being supported gave me the strength to help myself heal.
I’ve been fortunate to have a fantastic support system in other ways as well. When I worked, I had understanding bosses. When I became too sick to work, I had a dad who was willing to help me financially so that I could take the time I needed to get well. I had professors who worked with me in after deadlines so that I didn’t drive myself into the ground with schoolwork. My two little boys learned that Mommy needs a nap every single day, and they ask every morning how I’m feeling before they start demanding things I may or may not be able to do. I have friends who were there for me when I needed to talk, and who also understood when they didn’t hear from me for a week or so that I was likely too sick to sit behind the computer and tap out coherent email. I have a mom who’s come and cooked for me—and made extra for the freezer—when I’ve been too ill to do more than warm up chicken nuggets for the boys. And, of course, I have all of my Thursday night buddies here at CT who understand exactly where I’m coming from on my best and worst days.
So where do I go from here? I’m feeling better than I have in two and a half years, but it’s still a tenuous thing. Too much sun exposure or an errant flu could send my immune system into the overdrive that causes lung and kidney problems for me, and I’m still not strong enough to work and go to college as I used to. Without the plaquenil, the joint pain is likely to get worse, and I’m afraid to take the methyltrexate—I guess that’s something I’ll learn to live around. And I’m 50 pounds heavier than I was when I met the Good Doctor and the Right Guy, thanks to the evil prednisone—it will take me at least a year to lose the weight I want to lose, and that’s if I manage to stay healthy. I am aware that I’m not out of the woods—that I’ll never really be all the way out of the woods—but the trees are thinning, and I’m determined to start enjoying it.
So it’s time for me to get back out there—to start walking and working out again, to start going places with my kids again. It’s time to start planning for the future, mapping out the last two years of my undergraduate curriculum and developing a portfolio for my grad school application. Maybe—just maybe—I’ll feel secure enough in my health to finalize my divorce in the next six months--something I have been afraid to do because it means I’ll lose my health insurance. After that, who knows? When I was a younger woman, I had a five-year plan that I constantly worked on and updated; I threw the thing away when I got sick, because the five-hour plan was more important. Who can have goals when you’re too tired to take a shower without sitting down in the middle? But it’s time to turn back to my plans and my goals--to figure out where I’m going if my health holds. And to believe that it will.
I think it’s important to take stock of the things that lupus has given me, as well—I have perspective that I didn’t have before. I have a sense of the beauty of the everyday that was always lost in some frenetic shuffle when I was well. I’m more resilient, more determined, more forgiving of myself and others, more excited to find a niche than to carve one out. I’m happy now—and if I hadn’t had lupus, I don’t know that I would have grown emotionally to a point where I could feel this kind of contentment. And, of course, I’ve made some wonderful friends—you, dear reader, among them. Bless each and every one of you. And if there is something that you need to help you down the road toward Feeling Better, please—never hesitate to let me know.
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