As I’ve read over the other postings this month, I see so much of myself reflected in their words. Not one is exactly me, how I feel, what I deal with, but if you piece them together, a bit here and a bit there, a picture starts to form. The fact that I see even a part of me in someone else though, is in so many ways a relief. It means there’s someone else who understands, someone else who is sorting through all the issues, the ups and the downs and the uncertainties and unpredictability of the health issues that lupus, fibromyalgia, and other similar conditions bring with them.
I’ve been dealing on and of with health problems since I was 14, diagnosed with fibromyalgia and lupus (or lupus-syndrome depending on the doctor) since I was 19. In many ways, I’ve been very fortunate. I had a few rough years from 19-22. From ages 22-30 I coasted. I took a very reactive approach to my health, thinking that if I ignored it, it wasn’t an issue. I targeted issues as they arose: acid reflux, migraines, etc., etc. And I felt the need to prove that I was in control, not my body, and I let the over-achiever in me have free reign. I don’t think I did myself a lot of favors, but I made it through college, my first job, law school, another degree, a clerkship, and onto a professional career. I learned a few signs that my body would try to tell me and I would listen to them, but I definitely took a reactive, not proactive approach to my health. For instance, I learned that sores in the mouth meant it was time to take it easy for a few days or worse was yet to come. But as soon as I got past that, I went right back to the regular routine and life.
I managed, sometimes limping along, until really these past 6 months. At that point the wolf inside reared its nasty little head and demanded attention. I ended up in a fairly major flare, the first I’d had in almost 10 years. Ignoring it didn’t work so well for me, and for the first time, I had to admit that I couldn’t do it, that I couldn’t just go on as normal. While I know in my head that I wasn’t in control of that, it was such a blow. I felt like a failure. I’d spent so long convincing myself I was fine, that I was “normal” that I could do it all. The day I had to talk to our FMLA coordinator was one of the most emotional, most gut-wrenching days, that I can remember experiencing in my adult years.
From that point on, I decided to take a proactive, not reactive approach to my health. I’m in a high stress, demanding career, which I’m not willing to give up on. More than that, I realized I don’t want to feel that way again, when I don’t feel like myself at all. If there was a way to help prevent that, I was willing to try. I began to understand I couldn’t ignore the fact that I have lupus or that I have fibromyalgia. I accepted that these issues cannot be ignored, at least not with good results. So while I did the gamut of doctors and specialists these past few months, I also started looking into alternative medicines and taking a more holistic approach. And I found myself, almost by accident, a community of support and understanding.
I see a chiropractor (and have for over a year now), I started seeing a naturopath, and I started acupuncture. I worked with the naturopath on supplements and diet and with her help, I’ve made some major dietary changes. I kept a food diary and through it learned that I have issues with gluten. Cutting that from my diet, while challenging, has made such an improvement in my migraines and other inflammatory issues that it’s hard for me to believe. I’ve been able to go off the Ambien and the prednisone. I still take a large number of supplements and I continue to work to change my eating habits. I went off the birth control pill, which has been another positive change for me, with noticeable improvements in just the first few weeks. The one area I still have issues with is pain management. I see a massage therapist 1-2 times a month, my chiropractor at least weekly.
And then there’s the community. Sites like this, twitter, blogs, people who know, who understand. For the first time, I really feel like I don’t have to just deal with this internally. If I have questions, I “tweet” them, or post them on the blog I started as a form of release and outreach, or I search other blogs and resources. The support, the understanding, it’s been great.
Almost accidentally I found two women my age in my town, the wife of a friend and her children’s pediatrician, who have lupus. We’ve had lunch a couple times, with plans for more. It’s not your typical support group, those haven’t been for me. But it’s a chance to talk about what’s going on in your life with others who understand, without feeling like you’re whining, or boring someone with your health issues. It’s a real-life version of my online community.
And I reconnected over the past year with another friend who has turned out to be such a blessing. She has dealt with her own problems and understands from that perspective, and her mother has some of the similar issues I have, so she understands from that perspective as well.
I know that I have people who care about me. My parents. My husband, while not really sure what’s going on I think, has been fabulous, especially since this is the first time he’s had to go through this with me. I have other friends and family who are concerned and ask how I’m doing as well, and coworkers have been good too. But while they care, it’s so hard sometimes to try to explain how I feel, or what’s going on. I am so glad that they care enough to ask and to worry, but at the same time, I’m so glad to have found a group who understand the frustrations and the ups and downs that go along with lupus and fibro, without me having to go into detail. I’ve come to appreciate the Internet in a whole new way, as it’s led me to a great community of people who understand, people who are supportive, and who just “get it”. What more can you really ask for?
For now, I’m making my changes, taking my proactive stance, and working to continue with that plan even once I get through the worst here. And when I need a bit of support in doing that, I know that there are people and places I can turn to online to find that support. I’m hoping that maybe it will be another ten years before I have another major flare, but if that’s not the case, at least this time I’ll be more aware of what’s going on with myself and my body. While I can’t control my health, I can control what I do about it.
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JWZ (or Jennie) authors the blog, “ Taming The Wolf” and writes about “…the ups and downs of life as an early 30s career girl trying to balance the various demands of life, including fibromyalgia, autoimmune and dietary issues. Somedays I succeed more than others, but it’s an adventure…” You can also find her on Twitter as @TamingtheWolf. Be sure to follow this great gal and learn more about her adventurous spirit.
