So I've strayed a bit from two of my original intentions when starting this blog: talk about what it's like to live and deal with chronic illness both firsthand (me), and second hand (my mother); the second intention was to find quirky, different, garden-related titles for all my posts. I'll get back on track when I stop sliding on ice or mud everytime I walk out my front door. For now, I just feel like I've been going backwards.
I've been sick my whole life. I'm not just talking the tonsilitis, strep, flu, cold, etc. Even on a good day I was tired and achy. Everyone, including my primary doctor just passed it off as growing pains. It wasn't until I came home from work almost 10 years ago and my ex had to help me up off the floor because I was in so much pain, changing out of my uniform became too much to handle. So off to the ER I went. It started a few months earlier, but continued to get worse. By the time I went into the ER, I couldn't even wear jeans, as the weight and pressure left me in pure agony. Thankfully, yoga pants were coming into style. I could barely even pull my hair out of my face my hair hurt too much. Up until that point, I dealt with the increasing symptoms as I do everything else... sometimes I'd get angry and frustrated, but for the most part, I'd just suck it up. I had a life to live and bills to pay. Other than his total lack of support that night (he had an "important" poker game, so I had to drive myself the 3 miles to the ER), I will never forget the nurse who took care of me. I needed help getting into a gown, almost went through the roof when they had to draw blood for labs, and even the tiniest amount of pressure or movement caused excruciating pain. That's when I started to lose control. There I was, in an ER, with symptoms that made no sense, barely able to move, unable to change myself, and I was scared. Like most people in a similar situation, my brain kept thinking worst case scenarios except I couldn't fathom what could cause such hell. That amazing nurse sat by my side, her hand close to mine (since holding my hand hurt as well), listening to me as I cried from fear, from pain, from the unknown. She said there was nothing she could say to make me feel better, but she wasn't leaving my side until I was ready to go home. In the field of medicine, women (and men) in general just go to work, do their jobs, and go home. Every once in awhile you get blessed with the small few who genuinely care about the patients who come through their doors.
The Lyme Disease results wouldn't be available for several days, but other tests indicated that something was wrong, but nothing indicating as to what it could be. I was given a few Percocet, sent home with a copy of my labs, and told to see my primary doctor in the next few days.
Now, I've never really cared for my primary doctor. I was nothing more than another patient number. He got the Lyme report (negative), drew more labs, and sent me home with a prescription for vicodin and a note excusing me from work. Over the next few weeks my symptoms did not improve, even though my labs did. So once again, he assumed I was there to waste his time and mine. I mean, recent lab results show I'm getting healthier, right? That means that the pain and symptoms were all in my head. After refusing to take his word for it, I demanded a referral to at least 2 other specialists and he arrogantly gave me referrals for 3 (if 3 specialists agreed with him, then what do I know, right?) Except he ended up being the ass in the end. All 3 rheumatologists looked at the labs, took a brief history, performed a physical and diagnosed me with Fibromyalgia before I left their offices. Only one out of the 3 wanted additional labs, so he was the one I still see to this day. While it is highly likely I've had FMS my entire life, it was a Parvo B19 (Fifths Disease) outbreak I contracted that set in motion years of labs, trial and error medications, one specialist after another to find the source of symptoms that didn't fit into the fms mold, and I still feel like I don't have any more answers than I had in those months. I've since tested positive for Lyme Disease 8 times, Epstein Barr Virus, constant vitamin deficiencies, and new symptoms crop up all the time. I tend to blow anything new off when it first starts (such as the hair loss, seemingly being "allergic" to the sun, excessive bruising, joint pain, numbness....etc), but when it lasts for a few weeks, I make sure to document it. And I still don't have any more answers. I know Fibromyalgia is a real and legitimate illness and there's a good chance I do have it, but there are too many other things that can't be explained by such a simple diagnosis. Ten years later, I feel like I'm back at square one, banging my head into a wall, seeing doctor after doctor, the same tests run over and over, and hearing "there's most likely something else going on causing all of this, but we just don't know what..." I am determined that by the end of this year I will have real answers instead of new symptoms and ways to treat the symptoms. As difficult as it is, finding answers and having a name (or names) for what is making me so sick so often is easier to handle than dealing with the unknown...
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