It’s been a while

I have a few updates, things have just been so busy I haven’t had time to write.  I had an ACTH stimulation test on November 6th. They put in an IV and and they gave me synthetic cortisol and drew my blood after a half hour and again after an hour to see if it would stimulate the ACTH hormone. The test result came back good but not great. My doctor wanted me to keep taking the hydrocortisone. I haven’t been taking it since October 26th. I asked if I could stay off it and he said it was fine as long as I keep it with me just in case. I had another blood test to check my cortisol in December. It’s now at 9; still not back to normal but still going up!

I’m still having problems with the joints and muscles. I went back to the rheumatologist but it was not helpful. It continues to get worse. After a lot of research, I’m wondering if it’s steroid induced myopathy. I have read it can last a year! It has been very difficult to do daily tasks. I also spend time in bed struggling to go to sleep because my legs and arms are in pain. I’m learning to adjust. Some days are harder than others. Sometimes I get really frustrated and throw a little adult tantrum about how much my life has changed. Last Sunday I couldn’t get my tights on because I couldn’t bend my legs the way I needed to. It ended in ripped tights and tears. 

I do have hope that things will get better, I will get stronger, and I will have lots of lessons learned!