And It's About Time There Was Some Support For Cushing's!
Not sure exactly where to start. This seems to have been such a long, on-going thing for me. It started maybe five years ago with constant battles with ovarian cysts. Two and a half years ago after two laps they finally did a radical hysterectomy and removed the remaining pcs. of the ovaries, the uterus and the cervix. They also operated on the bladder and intestines since the edo had already started attacking them. The doctor said it was the worst case he had seen in his career.
I felt good for about six months and then slowly began realizing changes. I was getting tired easily again, the migraines came about once a month, I was putting on weight. I was told I was just getting old. I was 35 at the time.
Flash forward to now. In the last year I have gained almost 40 pounds on my 5'3" frame. My migraines are weekly. I am so fatigued that my eyes constantly burn as they beg to close and yet I don't sleep. I either lay awake all night or I doze for short periods at a time in which I have constant nightmares. I have developed a lump in back of my neck that constantly burns. My cholesterols and tri's are in the 300's. My allergies (which just started two years ago, have never had them before) have gotten so back I am up to 4 shots bi-weekly. I am the only patient my PC has like that. I have developed scaly skin and my hair is brittle and dry and falls out. I bruise if you look at me too long. The list goes on.
I have spent the last six months trying to convince someone that I am not mad or crazy. My family, friends (the ones that haven't deserted the "hypochondriac") all try to convince me I am depressed. Meanwhile I know I am not. Here is a brief medical run down: (in the last six months)
Nutritionist: Decided I had thyroid problems
Psychiatrist: Decided I am NOT depressed but we have tried 10 anti-depressants anyway to see if it would help me. It didn't. Wants to do a sleep apnea study.
Gynie: Says there could be a connection to all the female problems I have had to Cushing's.
Primary Care: Thinks I am nuts. I BEGGED for a year to see an endocrinologist. He ran some thyroid tests and said I didn't need to. With my insurance I needed a referral. Finally I contacted my insurance company and filed a complaint against him and I got my referral.
Endocrinologist: Has run the bloodwork, glucose testing, cortisol testing and the urine testing, all show positive for Cushing's, however is in no hurry to do anything. After ALL the positives now isn't sure that is what it is because it is so rare. Wants to wait a couple months to see her and see if my condition improves. Has determined that I am probably hypoglycemic.
I have tried to lose the weight, but cannot through exercise or diet, instead I keep gaining. All I do is cry. I always dreamed of meeting someone and getting married, but that will never happen for me. What man in his right mind would want a walking medical disaster?
In the meantime I don't know how much more I can take. I am wondering if I am
crazy?! I have been told I am a walking heart attack because of the cholesterol
levels...and I fall asleep at the wheel from fatigue and exhaustion. I feel
like I am going to be dead before this year is out and I just turned 38.
Can anyone give me some hope?