After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Looking for a Blessing

Looking for a Blessing

Sometimes you just get a string of bad luck. In my case it was an infection that first looked resolved and then came roaring back, didn't respond to the next course of treatment, and then I didn't tolerate the next. As a cherry on top I developed an allergic reaction to the antihistamine to make my body stop reacting…It was a brilliant, dazzling, eight-hour drug induced nirvana; a not recommended way to start November.

Like so many people, I do not do well being sick. I not only try to avoid sickness like the plague, I deny it even more. I push my body to the brink, and then I only admit it when I honestly, truly, can’t stand it anymore. Brilliant, I know.

If you’re thinking foolish, or I should know better as I have probably spent more hours with doctors than students spend to become a doctor, well…I have no defense. My body is going to call me out on it, as it does, because an illness no matter how trite makes all of my daily conditions/struggle ten times worse. That is a common problem for us with chronic illness—a cold can take down our bodies like a snow storm in Texas. Again, this is highly annoying and worked at to be avoided, denied, unseen, at all costs.

It doesn’t help my grumpy, exhausted, and not patient nature that even when I acted, “responsibly,” and dealt with my symptoms as they came, I still ended up wiped and in bed for over a week, (where I still am), with my fingers screaming in violent protest to writing this blog. (It’s okay; I can negotiate with them later.) But, again, that’s the stretch of bad luck. Or at least it would be if I believed in luck. Instead, I believe in living boldly—(my gambler’s spirit), with dashing moves and bold color strokes. Pretty fancy talk for someone who requires full physical assistance to move from one place to the next, write something, or even lift a plate of food.

One of my favorite quotes is, “If you don't like something, change it. If you can't change it, change your attitude,” by Maya Angelou. The power of choice over attitude revolutionized my embrace of the day. So as I have been laying here in bed with Camelot anchoring my legs, I try to ignore what a pain I must be to take care of and focus on being grateful that I don’t spend, all day, everyday in bed.

I may spend just about every day in my house, with a precious short moment outside, (the dogs are always happy to volunteer for that mission), but I at least spend it in different rooms. My mother made sure, when we realized how long term my limited state looked to be, that she found us a home I wasn’t confined to a room or two. Then, she blew up the notion of a quiet life when she decided to start her own business, operating a bakery from our house, which has grown to include a team of staff that come five days a week, filling the air with not only delicious smells but life and laughter.

Due to my own need for quiet and not a lot of visual stimulation, (you really sometimes have to fully appreciate my Elephant, and how it so thoroughly affected every muscle system in the body), I often spend the days in my own nirvana of a sun room on a comfortable couch, computer at hand, with Camelot supervising from a dog bed. I’m close enough to hear the action but far enough away it doesn’t ware me out. Plus, I have to go in and out of whenever I go anywhere. I can be more thought of as the bakery mascot—giving encouragement and praise and providing endlessly foolish jokes with a dazzling smile (there goes my flourish for living boldly), while not really taking part of the action.

The business is my mother’s dream, but she also did it as a gift for me; seeing long before I could what it would do for our world, how it would expand our lives exponentially. Being in it daily, the need to balance my own physical needs, endless medical research, and the demands that my mother’s business requires, I confess I sometimes lose focus on the gift of that. In application of Maya Angelou’s quote, and in the spirit of Thanksgiving, this reminder is the only blessing I can think of right now, as I’m stuck in bed and removed from the action. With this burst of exercise in typing, I’ve sweated out the last liter of fluid I had to drink, so I’m going to quit while I am ahead and say this’ll have to do!

Medical Politics? The Rules Of The Game

Medical Politics? The Rules Of The Game