Spoiler alert: If you’re expecting one of my usual uplifting, inspiring posts, where I use humor to make the icky seem, somehow, less so, you might want to skip to another blog, because this is definitely NOT that. For those dealing with myriad issues of multiple disease management, you’ll understand that I’m just having a bad day. I’ll get over it.
Once again, I find myself at square one. I’m exhausted, worn down by the constant nagging complaints of a physical body genetically engineered for planned obsolescence, continually trying to function normally in a culture that worships new and improved. …………………………….
I have, over the past week, begun questioning some of the medical choices I’ve had to make this year, not a new experience for me, as I’ve lived with a long list of physical issues for many years. The difference now is that I’m now 60 years old. Ever notice that the people who say that “age is just a number” are generally the ones who have few or no health issues or they’re under 35 years old?
My struggle with myasthenia gravis began long before anyone could determine a diagnosis. There are relatively few treatments for this disease, so I’ve been willing to try whatever seems reasonable. The first round of meds made me sick day in and day out, added 15 pounds (visualize 15 boxes of butter stuck to my gut) in 10 weeks, but didn’t do much in the way of treating symptoms, as evidenced by my head rolling around on my neck like one of those bobble-headed dolls you sometimes see in the back windows of cars belonging to a certain segment of society. Mestinon failed the risk/benefit analysis, going down in flames (and I’ve seen those on the sides of said cars, as well).
Although made aware of the potential side effects and risks, I next opted to try prednisone, a corticosteroid. My father, also diagnosed at 59 with MG, took prednisone for 20 years before his death at 79. For a type II diabetic, the side effects can be serious, possibly life threatening, and definitely life shortening. From the first day on the drug, my blood glucose skyrockted. For a month, I tried in vain to control it with increasing doses of oral meds, eventually ending up on a cocktail of high doses of insulin in combination with oral medications. Another month of experimentation finally brought my blood glucose under control, but at what cost?
What I had not anticipated was the very rapid weight gain and accompanying moonface that occurred with prednisone, despite eating a ridiculously low-carb, low-calorie diet. Every additional box of butter negatively affects insulin resistance, very aggressive osteoarthritis, and both cervical and lumbar spinal stenosis, not to mention my budget and the cost of visiting Omar the tent maker in search of something with enough fabric to cover my bloated body. Neither had I anticipated the astronomical cost of all the medications each month (I’m working full time just to pay the medical bills), nor the number of times I’d have to change and wash the sheets after waking up soaking wet with perspiration during the night, another gift of prednisone. Each trip up and down to the laundry room in the basement exacts a toll. Going down is a piece of cake. Coming back up with an armload of laundry is virtually impossible when you need your hands to pull yourself up with the railings. (I’ve found the cats singularly unhelpful in this endeavor.)
And so, I have begun tapering off the meds. I have no idea what will be next. Meanwhile, a recent MRI shows a cyst in my foot. I see yet another doctor next week to figure out what to do about that.
I’m tired, very tired. My head hurts, my foot is throbbing, my arthritic shoulder aches, my jacked-up spine is restricting my mobility, the muscles across my mid back and into my neck have already left the building without me (and it’s only 6:51 a.m.), and I’ve only had one cup of coffee. Time to shower and get dressed for work.
*Deepest thanks to “14” at galleryoftheabsurd.com for permission to use her image, with alteration. Click here to see the original (https://penguin4peace.files.wordpress.com/2014/08/1a5c9-babstent_1.jpg) and marvel at her other great artwork, check out her site.