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Avoiding Unstable People Who Want to Start a Support Group

Posted Jan 17 2010 2:36pm

There is a wonderful website, the source of some of my initial information concerning Cushing’s disease at . I visited it today and found my biography which I wrote the summer of ’04 after the pituitary tumor was removed. Unfortunately, I find the site quite complicated to navigate, albeit informative, and I was unable to figure out how to update my old bio. It left off with me saying that I would love to get in contact with other Cushies in my state so we could start a local support group. “Whaddya think?” I eagerly asked.

The trouble with Cushing’s patients is that their symptoms vary and they don’t all have the same end result. Cushing’s causes different things in different people. The excessive stress hormone from Cushing’s causes fatal heart disease in some people, and diabetes in others. It can be associated with a number of odd glandular diseases with names like Acromegaly, Addison’s, Carney Complex, Nelson’s, Conn’s, PCOS, Prolactinoma and Rathke Cleft. Some people have severe depressive and/or psychological issues. Years of excessive steroids can cause thinning ligaments and joint problems. While Internet support is valuable, personal communication can be downright awkward because while we all had difficulty getting diagnosed, very few of us have identical issues.

For instance, take my endocrinologist’s other patient who was across the hall from me in the hospital. My doctor said that this patient was interested in getting a support group going, so I gave my doctor permission to have her call me. (I was still in the “Let’s have a support group – whaddya think?” mode). She was born in Italy and still had a thick accent and talked a mile a minute. It made it very difficult to understand her but she had experienced Dr. Nasty’s wrath which was comforting to know (in a sick sort of way). However, her boldness unnerved me. Just three weeks after surgery, she went with her family to Disneyland! (Remember the no bending over, no sneezing or coughing, no blowing your nose for three months rule?). I could barely walk from my bedroom to the kitchen at this point! I’m already thinking she’s a little wacky, when she tells me how Dr. Nasty had left packing in her nose, too, but yanked it out herself! So I’m asking her how she knew it was safe to do so, and she said something like “What’s the worse thing that can happen? If I need surgery again – so what?”

This should have been a big clue that this lady was definitely a “little off,” but I kept in contact with her for awhile. She would later have a cerebrospinal fluid leak (what a surprise) and need to be rehospitalized for repairs. She would also contact me to be at the bedside of new surgical patients of Dr. Nasty. Well, since it was two hours away and I still wasn’t feeling so great, I wouldn’t be able to go. But she didn’t understand that because she was on two different antidepressants, and some other medicine for being manic-depressant, and she felt great, so I should go on her medicines, too. She would call constantly with one-sided (her side) ramblings.

She did give me more insight on the damage Cushing’s disease caused its victims. Since the surgery I was experiencing a lot of nighttime anxiety, and finding the weaning off prednisone unbearable, so I contacted a counselor who could talk me through this recovery process. About the same time we had to get our phone number changed (for unrelated reasons) and I lost contact with her. And that helped me a whole lot, too.



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