June 24, 2016
What Makes You Strut?
There are 3 steps leading toward the IV room at the doctor's office, and I just sorta trotted up them. I shocked myself and exclaimed to one of my nurses, Wendy, with a few tears, "I just kinda ran up the steps!" We celebrated for a moment. Me in my flip flops, and she with a syringe in her hand. Quietly, but truly celebrated with that little spark of spontaneous joy. I love Wendy.
It is remarkable what an infection can do. Just a few weeks ago, I was having a great deal of trouble going up and especially down even one step, because my muscles were becoming shockingly and suddenly weak. I'd see a step, panic, and then strategize how I would make my way down. A flight of stairs took an odd amount of courage. I lived in a second floor apartment and it was literally 24 hours between my ability to walk down the steps without blinking, and then pausing in fear as if I were at the top of Everest. If someone were watching, I tried to walk down like a super model, but could see how dreadfully I failed by the looks on my friend's faces. I think I take so many pictures of shoes and my feet, because in May, I was beginning to wonder if I would be in a wheelchair by June. Lyme likes to attack ligaments and joints, and for me it is the ligaments in the hips and shoulder - this time on my left side, and more recently my left knee and elbow, as well. Then all of my muscles got weak. When this first started, it focused more on my right side, but at my sickest I would wake up with all of my limbs temporarily paralized for hours. The fatigue then, was stunning. Neverending. But at that time I was told that I would be lucky if I lived.
But I did live. In February, I as I started feeling like myself again, I had moments that I could skip around like a teenager. I love to move. Then the door froze shut behind me, I was without a coat, and my skippy little feet found a patch of ice outside and hit only one thing - my head. Concussion.
I was starting to work out again on my Total Gym after adjusting my IV treatment at my regular physician's office in Michigan. As the infection was killed off, I could build my muscle back up again, but I could tell there was something blocking my progress. In 2013 and 2014, I was having trouble getting out of the car without falling. My left leg just couldn't hold any weight on its own. I couldn't open doors with my left arm, or hold anything reliably in my left hand. It was simply too weak.
A couple of years before that, I was doing handstands in yoga class. After working my way out of a terrible relapse that happened shortly after I moved to Michigan, I got my stiff back into backbends again, and felt my power return. I would go from very athletic to feeling like aliens took over my body. Once, my muscles were spasming so severely that my Dad brought me to my medical masage therapist, and the therapist had to bring me home and carry me inside. This is scary stuff. Each relapse was brought on by extreme stress and the lack of my own knowlege as well as medical knowlege about Lyme Disease and its co-infections did nothing to stop it. I had never, until recently, heard the word, "co-infection."
Co-infections are one of 16 ways, according to Dr. Horowitz, that keep people with Lyme sick - chronic, they call it. I hate that word, "chronic." But so it has been.
Now, I wait to see which co-infections I actually have.
Each time I relapse, I put out a pair of beautiful high heeled shoes to keep me going toward a goal. I put them where I can pass by them every day. I keep them out to remind me that there is beauty in the world, and people to see, and streets to strut. I like homework, you see. I like something to concentrate on besides feeling like crap. "Hope" is too namby pamby. It feels like a cruel, unattainable joke with a bad, bad punchline. Homework, now that I get. A target, a goal. A bullseye.
Pink high heels.