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Well, it will be 3 years since my last cushie surgery, this coming January. Those of you who know me, know I had the disease for 10 years, and had an unsuccessful pituitary surgery, followed by an incomplete BLA. (Yes they left 1/3 of my right adrenal gland). It has been one year, and I have normal cortisol levels, and only a few episodes where I need to actually take cortisol. Don't know why the levels are normal, in that my ACTH is still elevated, but I am so grateful. It is entirely possible that the left adrenal gland was more diseased than first imagined. The docs think I may have not only had the Cushing's syndrome, but the Cushing's disease, as well. I still am left with diabetes, and now celiac disease (completely intolerant to gluten), but they are well controlled. I have osteoporosis to a mild degree, but I am working on that, too.
It has been a long journey. Those of you out there who think it is hopeless, and discouraging, DON'T. The fight was well worth it. I am alive, Cushing-free, with thin ankles, no swelling, no high BP, no sleeplesness, no sweating, no weight gain. I have lost nearly 40 pounds. 50 more to go (yes I gained 90 pounds with Cushings), no infections, no muscle weakness. I appreciate life, am tolerant of others, volunteer at church, do watercoloring, make jewelry and spend time with family. I probably, at 56 years of age, will ever go back to full-time nursing. My stamina is still a bit low.
Fight the fight. Go all the way. God loves you and knows your tears,and sees the stares from people who think you are fat and lazy, and the incompetent crazy docs you have to deal with, month after month, year after year. Do not choose to be a victim, you were "chosen" for this disease, do not let it rule you or beat you down. You have a purpose, and a reason, and sometimes we are not "privy" to the WHY. Stay on these boards, they are filled with veterans, and newbies alike and know you will always have a home.
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