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Claudette's Story

My story...well, it's definitely been that, unfortunately. My first glimpse of this thing when it started, was a small patch of hair I saw, on the left side of my face, (in which case I tried to take off with some hair remover (twice applying it) then proceeded to burn the crap out of my neck!), but this my friends, was only the beginning. Now 311 lbs later, adding anywhere from 10 to 15 pounds a year for the last 18, has been anything but joyous.

At present, I am on my sixth endo, she currently resides in Columbus, at OSU hospital. she just ran a 24 hr. cortisol test on me a few weeks ago, it came back normal, but the testosterone readings are still high, she says she will recheck in six months. Until fairly recently, I have noticed yet another symptom that figures in to the Cushing's' equation. I have noticed upper arm and leg weakness (burning, trembling) more frequently upon simple exertion. I think I first noticed it a couple of years back, now it seems more frequent. I also think, my bones are weakening.

I have begun physical therapy again for a constant reoccurring chronic low back that is with me 24/7. It seems the pain is not only traveling crossways in the lumbar area, but seems to be traveling up my spine as well, causing alot pain and stiffness. Currently, I have been out of work for over two years due to everything that has materialized over time. I could not keep up the pace and was in too much pain to continue. I have been trying for disability for three years, but was just denied again. Without a diagnosis, they don't take this thing seriously enough. The endo I had before the one I have, told me that I had adrenal hyperplasia and prescribed me spiranolactone. I have been taking that for over two years, it acts as a diuretic, but has also helped with the hair growth, on my back especially, although the hair on my face continues to grow like a man's and I must shave everyday, sometimes even shaving twice a day to keep the shadow away. I had been going to a hair removal specialist (500.00 a whack) until somewhere in the process, this woman says, "you know, you might want to ask your doctor about this hair removal, it does not look like it's working, why don't you ask her about this before you make another appointment, you're spending an awful lot of money on this and I would hate to see you waste it". So.... since that appt, I have not had any laser treatments, until I can get these other problems (weight) under control, it probably won't work.

The problems go on and on and just keep coming, my endo has asked me twice now if I am suicidal, I hesitantly tell her no, but on the inside I feel much different at times. Sometimes I do feel it would be better to be "not here", but I try like hell to remain positive, some days its harder than others, but i keep on. as far as a diagnosis goes, they might as well tell me I have Cushing's since it seems I have all the symptoms, but what they do come up with so far has been PCOS, adrenal hyperplasia and diabetes.

Whether the doctors will come up with a diagnosis remains to be seen, I just know that I am mostly miserable and tired and feel that there is no escape. There is no amount of sleep, pills, therapy (physical and mental) that can cure this. It is an ongoing and exhausting process, not to mention the treatment from some of the endos--their attitudes, their neglect, the manner in which they perceive our "concerns" that's a whole other story that would take up another page or two. I don't know whets been worse, the disease itself or the doctors who treat it or 'mistreat it' its funny how such a terrible disease gets no attention, I am all for opening this can of worms, just let me know, I'll be there, well you all know what I mean--relatively, thank for letting me share, I hope I can find some friends--take care love and peace, Claudette

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