You may or may not have noticed the countdown on the right side of the page. That is the countdown to my follow up appointment with the physician in Atlanta. At that appointment I will receive the results of my muscle biopsy and blood work. This is a big deal for me. I have been waiting a long time for this. I have a lot of hope that I will finally receive an accurate diagnosis on March 1st. In addition to a diagnosis I will find out, therefore, the prognosis, treatment, etc.
This is the first time that I have been hopeful that I will finally find out exactly what is going on with my body. I left Mayo last spring with a diagnosis of POTS. I didn't, however, feel that that was the end. I have just known that something else, in addition to POTS, is wrong. The treatment the doctors as mayo gave me has not worked and their prognosis of when I would get better has been proven wrong. That has reinforced my thoughts that something else is wrong. I am confident that I will get a definitive diagnosis at my appt. on March 1st.
Having a definitive diagnosis means a lot to me. Even if there is no cure or even a reliable treatment, I will be so happy to know what exactly I'm dealing with. I can, therefore, do research myself on treatments, raise awareness of whatever rare disease I may be dealing with, and/or work on fund-raising for such disease to help find a cure. These are all important to me. I am a fighter, but right now I don't know what I'm fighting for (other than the general idea of being healthy) or against.
Last weekend I really enjoyed a weekend away from home with some girlfriends. I invited my good friends as well as a couple of new friends down to the Lake of the Ozarks for the weekend. Yes, I know there's snow on the ground and it's freezing outside. However, we had a blast. We just stayed inside all weekend playing games, reading, drinking, smoking (if you are the long arm of the law, we were smoking cigarettes, of course) , and laughing. It was so nice to get away from home, away from the kids, and spend a little time with all of my friends. I would've really liked to get away from the one thing that causes me so much stress, my illness. But, alas, (yes, I said alas) that is not possible.
The one thing I hated about the weekend... KU lost to Texas! Their first loss of the season and it had to be when I was watching it with a bunch of crappy ass MU fans. At least I had two of my fellow KU alumni there. But listening to the others was excruciating. Maybe that's why my head hurt so bad on Sunday. And just because I feel like it...
Because I can't take a vacation from my illness, I was miserable on Sunday and Monday. I was in tears both days because my pain and muscle weakness were so awful. However, it was worth it. I only wish I could laugh that much more often.
My problem now is that I don't have anything to keep my mind off of the countdown to March 1st and/or Spring. If I'm having a good day, it's not so bad. However, on Monday, when I was in bed all day in excruciating head and leg pain, I didn't think there was any way in hell I could wait until March 1st.
I think I'm going to add another countdown to my blog. A countdown to Spring. I would add a countdown to my sanity, but I don't know if that's possible (my sanity, that is).
I have plenty more to discuss, but I will save until next time. I don't want to bore you all too much.