I am an autoimmune disease survivor. What, you ask? We never hear words like that. Those who had cancer, receive treatment, and enter into remission are called “survivors” of their illness. It’s common to hear people refer to themselves as breast-cancer survivors, etc. Well, I now see myself as an autoimmune survivor. I’m going post about my story here to provide encouragement and ideas for those who also want thrive and survive a chronic disease. They aren’t in a specific order and each strategy is just one facet my path to wellness. My trip wasn’t short or easy, but it worked. There were lots of changes and many coping strategies that helped.
How it Started
On December 21, 2002, I had the mother of all migraines, I hurt everywhere, and I finally realized that something was truly wrong. I could no longer overlook my symptoms and write them off as something I just needed to gut through. My internal medicine specialist decided the symptoms weren’t real and basically told me I was a hypochondriac. One of my symptoms affected my eyes,
so I saw my ophthalmologist, who immediately understood the severity of my condition. He called my soon-to-be-fired internist and told her what raft of medical tests I needed to narrow my diagnosis. He also recommended that I find a rheumatologist, a specialty I hadn’t heard before, that specializes in treating autoimmune diseases. The aspect of the condition involving my eyes is the third leading cause of blindness in the US and my ophthalmologist became my hero. He not only saved my vision, but he understood my symptoms and didn’t think I was nuts.
As the doctors tried to narrow the diagnosis and ensure correct treatment, I endured endless tests that were expensive, painful, and frightening. They had to be sure it wasn’t muscular sclerosis, for example because it had a totally different treatment and trajectory. My symptoms didn’t fit neatly into a specific flavor of autoimmune disease but matched the syndrome as a whole. My doctor finally asked if I wanted to continue narrowing the diagnosis or start treatment. Once treatment started, it would prevent further diagnosis until I had another relapse. Relapse? What? He kindly explained that I would never get over the disease and that I might periodically go into remission while on the medication and then surge into a period of symptoms in which I’d need even more medication. During one of those surges, we might be able to further refine the diagnosis to a type of autoimmune disease. Top contenders were ankylosing spondylitis and lupus.
Screw the tests – I quickly opted for treatment. All my joints hurt. My hands/fingers were so painful I couldn’t grip a pen or steering wheel. Pain limited the distance I could walk, and I was so fatigued I couldn’t make an entire circuit of my grocery store. I felt like a basket case and wasn’t thinking too clearly either. Life sucked and I began to wonder what was the point. I had four young children and a full-time job that my family needed me to continue if we wanted to pay the mortgage. What I’d once done without a thought – all the cooking, shopping, laundry, and chores — looked insurmountable.
We eventually found a medication that worked, but the doctor cautioned that it was pretty new. There were few side affects, but the label included warnings that cancer of several critical organs could result in a few years down the road. The tests hadn’t run long enough to make a conclusion. Well, that made me feel better (NOT!).
How it Ended
Fast-forward to July 5, 2007 – my first day without any prescription medication.
I was free of the immune suppressants and the pain medication. I was still in pain, but it wasn’t debilitating any more. I was unwilling to move up to opioids and the lesser prescriptions either didn’t help or caused major headaches, so I ditched all the pain meds and decided I would just have to cope with ibuprofen. Unbelievably, I did fine.
Now, I can walk a couple of miles without it becoming too much of an ordeal. My hands and fingers work fine. I don’t need any pain medication except for a bit of ibuprofen when I over-do. I’m over it! I am so much happier and each year I feel healthier than I did the year before.
It was a long journey back to health, and my doctors didn’t understand how I did it. When I tried to explain it, they didn’t understand something so contrary to their ideas of disease and medicine, and I soon stopped trying to explain. I stopped seeing the rheumatologist. Somewhere in the world, there are others who are walking this same path. They’re looking for ideas on how to cope with bodies that suddenly seem to have a mind of their own.
I think much of what I learned can apply to many health issues, not just autoimmune ones. I’m posting a series throughout this next year to help those of you with a chronic illness to take your life back, one bit at a time. If we leave it up to the doctors, we’ll cope, but we’ll end up addicted to pain medication and with unintended side-effects galore. If we want full health, not just getting by, we have to be willing to change our thinking and lifestyle that got us into this mess. We have to honor and take charge of our bodies. We can’t leave everything up to the doctors – it’s up to us.