I’m coming up on my four year anniversary. Not my wedding, although that is on the horizon too, but of being diagnosed with Lupus and Fibromyalgia. In some ways it feels like it was a very long time ago and in others it’s as if I was just sitting in my first rheumatologists office. It’s such a weird dichotomy to feel so knowledgeable and yet feel so helpless in dealing with my own health. After this long of dealing with all the symptoms, you would think I or at least my doctors, have a handle on it. The reality is my cocktail of medication still changes. As I write this I’m starting 2 new drugs. One I have been on in the past that my last doctor told me to stop taking but the new doctor says try it and if it makes you feel better then stay on it.
It’s almost comical how each doctor has a different view of treatments. My first rheumatologist handed me prescriptions like candy. All except the really good stuff, other warriors will know what kind of stuff I’m referring too. In all honesty I needed all those drugs. I was in my first flare and it needed to be stabilized. Skip two years later and my next rheumy had a more holistic approach and when I say holistic all I mean was she didn’t want me on any meds at all. Our appointments ran more like therapy sessions. But I hated pumping my body full of chemicals, so I spent another year slowly going off all but two medications. I was still “stable” in med speak but I always felt like crap, all my symptoms were heightened and constant. There were few things I could do without resorting to strong medication to make me feel better but they were all temporary and typically cost more than I was willing to spend.
Now fast forward to my 4 year anniversary. I’ve just moved to a new state, the very very health state of Colorado and new doctors. They want to change things up. If certain meds make me feel better and let me live a more normal life then why not take them? That comment was like a slap in the face. The last 2 years I have been completely passive, letting my doctors tell me what treatments to take and my only question was “what are the side effects?” They know best right? In reality I’ve been a husk of myself. I lowered my meds as far as I could go without going insane with pain and sleep deprivation and all the accompanying side affects and thought I was doing the right thing. The less chemicals the better. Right? Result: My life sucked. I had energy for nothing, I was a zombie. Brain fog and pain ruled my days. I hated leaving the house, just the process of showering and putting on my eyes tuckered me out. My couch was my best friend. Books were my pain killers.
I don’t want to be that person anymore. Passive can sucks eggs, proactive is my new sidekick. It’s not easy. I have a lot of goals of what changes I want in my life and I wont lie, it’s going to take a while and a lot of effort. But living in such a healthly and active state, where trails surround the city like snail tracks on a rainy sidewalk, helps with the motivation. I’m so tired of feeling like crap that I’m willing to add more chemicals to get pieces of my life back. I want to go out to dinner with friends, hang out and play games, spend the afternoon at the mall, take my dog hiking, feel like a person again. If that means adding a few things to my twice daily cocktail, fine. Eventually when I’m feeling healthier I can start the process of taking them back out and see if I can manage without them again. The key word is ‘manage’. The rest of my life will be about managing. Managing my meds, my symptoms, my life, my activities….My health will never be healthy, it will be a constant vigilance and acknowledgement of symptoms and managing them. Unless a cure is found in my lifetime, I will always be managing these diseases. A juggling act that will never cease.
After four years, I’m finally beginning to understand and accept the challenge of having 2 auto-immune diseases and another of chronic pain. I will never be rid of them but I can yell at them when I have to and smack them back in there places when there being rowdy. Constant doctors appointments and changing cocktails are routine and one day I hope to scrape both down to there absolute minimum. It will take a lot of work and a lot of alternative therapies and I’m willing to try to use them to my complete advantage. As you can see after hundreds of doctors appointments, books, articles, research, blogs, support groups and ranting I’m full of knowledge but it doesn’t change the fact that these diseases cause our bodies to constantly change, creating new symptoms and new triggers to often. In the end, I know what I want now and I’m willing to work to achieve it. If my doctors are not of board then I’ll get new ones!
For other warriors curious about my treatment plan, scroll down.
Meds: Lyrica, Plaquenil, Ambien, Cymbalta, Hydrocordone, Nexium, Depro-provera, Vitamins (fish oil, Vit D, C) and ibuprofen.
Doctors: Rheumatologist, Hematologist, Opthamologist, Primary Care, Dentist, Plumonary Specialist, Chiropractor and Gynecologist.