After many months of waiting, I finally received a diagnosis (hopefully the right one this time!) today. The verdict? Congenital Myopathy. Apparently, I have had some of this since birth, or maybe even before. There are several variations of this, but most insurances will not cover more specific tests unless one plans to have children.
I can remember being the smallest, weakest, and most uncoordinated child on the playground. But, I was able to march in the band when I got older. I did some swimming and aerobics when I was in my 20s and 30s, but I was never able to keep up with others in the class. By my 40s I had multiple other problems (ruptured discs, asthma, sleep apnea, severe anemia) that cropped up and apparently exacerbated the problems I already had.
This is one of those bad news/good news things. The bad news is that there is no cure for this. Muscle abnormality is muscle abnormality. The good news is that it is relatively non-progressive. There is something called Coenzyme Q10 that may help a bit and I have been given permission to do some gentle stretching. Stimulants may help the severe fatigue if my heart checks out OK. I am continuing my more mindful eating and less of me to move around would certainly help.
For the most part, my fears have been relieved. I am not on a path to become completely helpless or a burden to my loved ones. I just keep on keeping on, doing the best I can with what I have to work with.
And I don't think that is too shabby.
Sunday, February 17, 2013
Like so many who have had the "crud" this Winter, I am sure I am not the only one who is just tired. Tired of coughing. Tired of losing sleep. Tired of taking seemingly endless medications. Tired of being tired!
The mind and body are sometimes incompatibly intertwined. The body becomes tired and the mind seems to automatically follow suit.
One of the things I think I am most tired of is people saying "Well, you have been sick for 10 days! Aren't you about OVER it?" As if that is going to somehow make me buck up and get well?
Fatigue seems to color my mood more than my pain does. I can and do muscle through a certain amount of pain every day. But after a while, "tired" gets me. It saps my creativity. Dulls my brain. Plays havoc with my attention span.
I am sure that this is mostly just lack of sleep talking and it will improve when I really AM over the "crud."
But, for now, I am...
Tuesday, February 05, 2013
I received a late evening (9 PM for us) call last night. That does not sound late to most people these days, but, for my "old school" husband, it is. Has anyone else ever noticed that calls after 9 PM and before 8 AM are rarely good news? At least for my generation.
This call was no exception. It was an alert to be aware of impending DRAMA. Totally uncalled for, unnecessary, and exhausting drama. Drama that I refused to get into last night. I may need to help address this issue, but I will do it at a normal hour. Better yet, I will get my ever efficient and logical sister to address it.
I am already dreading an event that may well turn into a "dramafest." I will do what I need to do. My parents reared me properly. There are duties and occasions which I will not shirk, despite personal misgivings.
I truly feel sorry for people who see drama is a way of life. A way to stay in the spotlight. A way to feel important when other aspects of their lives are less than satisfying.
One of my favorite sayings is "Save the drama for your mama."
I don't want it.