RhondaK's Journal

1/9/07, It is 2:23 a.m. meaning it is another sleepless night. I still have trouble believing that I developed Cushings for the second time. To go through another horrible surgery that removed the carcinoid with the 3rd adrenal gland growing inside of it, is just to much to comprehend somedays. I have never really felt well since this last surgery. And now I am seeing symptoms of Cushings again. I have lost faith in doctors and no longer know what to do or where to turn. My Neuro-endocrine surgeon and my endocrinologist are in total disagreement with one another. My endocrinologist since 1985 apparantly did not do certain follow up testing that may have found this problem earlier. That is according to my neuro-endocrine surgeon, Dr. Sheldon, who also believes that my endocrinologist has been over medicating me, thereby creating this problem or at least making it worse. Yet my endocrinologist, Dr. Sunderlin believes that everything is fine and there is nothing to worry about. I have requested a referral for a 2nd opinion at another hospital/clinic. My appointment is not until 2/28/07, but at least I have one to look forward to. I keep praying that I will find a Doctor that will investigate and research and collaborate and network with other specialists until a solution to help me is found. After my pituitary and adrenal surgery's in 1985-86 I lost the excess weight, my hair grew back, my skin color, tone and elasticity improved and my overall health and energy improved. I don't know when things went arye again. I do know that for at least 3 years prior to 2006 I constantly would say "if I didn't know any better I'd swear that I have cushing's all over again". But that , I thought, was impossible! I was told over and over again that I could never get Cushing's again. I no longer had the glands that created the problem. But now I know that that is just not true. It sucks to be given just a small taste of what normal may feel like. This time I lost the weight, heck I was a size 4 for 2 months, now size 6, after a month, is getting tight too. I am watching my stomach and face get more rounded. My skin color is dark ash grey especially my toes, knuckles, knees and elbows. My eyes are yellow and bloodshot. Ontop of all this in 2002 I fell down a flight of stairs injuring my spine in 3 places and developed RSD with severe neuropathy in my feet and legs. My joints have been hurting so much lately and the neuropathy causes so much pain, crippling cramps and muscle spasms. In the recent past the muscle spasms have been so intense that the spasms have broken my ribs. I am so worried that if I don't find a Doctor who is willing to take on a challenge then this illness will not let me ever really live, let alone live long enough to see any grandchildren.With all of the doctors that I see one would think that someone would take more of an interest in getting to the core of my situation. I see a primary care physician, an endocrinologist, neurologist, urologist, gynocologist, opthomologist, neuro-opthomologist, orthopedic MD/surgeon, neuro-endocrinologist/surgeon and an internal medicine MD/surgeon. All through the same hospital/clinic, yet it seems that the networking needs serious improvement. Just prior to this last surgery in May, I had a minor heart attack. Now just 2 weeks ago I had another minor heart attack. My blood pressure had leveled out to where it should be, but now it is climbing again. I truly don't know how much more I can take. My body feels so tired. But I guess it should, afterall, I have been dealing with Cushings, through one complication of it or another, for almost 25 years.