December 18, 2015
When you don’t have a diagnosis life can be very scary. You symptomize your whole life, paying attention to every little detail of your body and wondering if that will be the key to wellness while at the same time trying very hard not to be a hypochondriac. The future is so uncertain and you don’t know how to plan for it at all. In no particular order here are the things I’ve been worrying about lately; how to teach Martin to call 911 and what to say in case I don’t wake up one morning, will I be able to go back to my job, will Derek be able to continue being this supportive, how long can I really expect him to go without sex, what if the first doctor was right (hypokalemic periodic paralysis) and I’ve lost that diagnosis to happenstance, what if they never figure it out, will I ever be able to give Martin a piggyback, what is going on with my heart, could it just be Addison’s Disease, do I sound like a broken record, will I make my parents have to deal with losing another child, how do I lose weight when I can hardly walk and all I want to eat is sugar, and on and on and on.
I’m so weak today I crawled to the bathroom. It’s possible for me to walk of course, but it was just so much easier to crawl. The fat guy sitting on my chest is getting fatter and fatter. Waking up this morning I cherished the few minutes of weightlessness before I sat up and he returned. Some nights he wakes me up a few times by jumping on my chest. I haven’t been sleeping well. When I lay down my legs are so uncomfortable and my heart seems to want to beat out of my chest. No matter how I try to position myself I don’t feel comfortable. I’ve resorted to taking ZyQuill a few nights a week. Sometimes it works and sometimes it doesn’t. I’ve asked my family doctor for a sleeping pill, but with my shortness of breath he’s reluctant to prescribe it. He did give me an inhaler to try for a month, I’ve taken it for 9 days so far and haven’t noticed a difference.
I went to the neurologists in the other city and they did more testing. It provided no answers though, and now my journey with neurology is finished. I don’t know what that means though. I didn’t get a follow up appointment to ask, and when I called I was told the doctor doesn’t need to see me. Defeated I asked for copies of everything. I got them but they provided no answers and instead just referred to me as a “very, very complicated case”. I’m still being seen by other specialists (respirologist and gastrointestinologist) so it’s still a wait and see game. I have a scope of some kind scheduled for 2 months from now.
The massive purge of stuff continues. My basement is practically empty now.