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Age 46. Married. One daughter in 5th grade, another in 10th. Working in a high stress job 4 ½ days a week. Busy all the time. I started gaining weight and would eat dinner then head for a box of crackers even though I was already full. My face and neck started breaking out. I started having to get up at 3:00 am to go to the bathroom. My face got red and puffy, my arms and legs got skinny. My blood pressure went up, and my sex drive went down. None of my clothes fit. I thought I was in menopause, but tests said no. I thought I had rosacea, but the dermatologist said no. I finally went to a new family doctor with a typewritten page long of symptoms, and he immediately sent me for tests for Cushings….He said he could retire now because he had successfully diagnosed a case of Cushings! The next few months brought a whirlwind of tests, doctors visits, and finally a transphenoidal operation in a local hospital. I foolishly went on blind faith in the doctors, ignoring Louise Pace's plea to go to a doctor in another city who was more experienced in pituitary surgery. I didn't want to leave my family, and I didn't want to question my doctors. Well, I thought my surgery in April of 1997 was a success..the doctor told me he had removed the tumor, I was back to work in 8 weeks, I lost all the weight I had gained (about 25 lb.) and life was good again-until a year later when I went to donate blood and was told my blood pressure was too high. I was also waking up again at 3:00 am again to go to the bathroom., so off I went to the endo for more 24 hour urine collections, and sure enough, the Cushings was back…My endo urged me not to do any research on the Internet, to leave everything to him. This did not set well with me, and when I tried to talk to my neurosurgeon, he would not return any of my phone calls, which I found rather odd. I decided at this point I needed to take matters into my own hands. I talked to Louise, I talked to Kathy Carbone, I talked to the Pituitary Tumor Network Assoc, I met with doctors in New York, but decided in the end, my best chance for recovery was to try to get admitted to the NIH. I went through months of letter writing, sending x-rays, presenting my case, phone calls, emails until I was finally accepted as an "exception"…Persistence was the word here…They do not deal with many repeat transphenoidals. During this period, my weight went up 40 lb., my legs were so weak I couldn't get up from a squat, I could barely climb the stairs at night to go to bed. My brain was in a constant fog. I couldn't make a decision to save my life. I couldn't even decide if a cake was done cooking in the oven. I didn't even trust myself to be driving because I would have to tell myself "green means go, red means stop"…I was shopping for my clothes in the maternity section, I had a mustache, and my hair was thinning. My periods stopped, and I was pretty much a mess. In the meantime, I sent my oldest daughter off to college. During all this time, which was almost year, I started taking meditation classes, therapeutic touch classes, and reading about relaxation therapy. I headed to NIH in April of 1999-I was so impressed with the quality of care in this facility and met people there that I still correspond with. I spent 3 weeks there away from my family, but it gave me time to concentrate in myself and my healing…I brought meditation tapes and music with me, and the meditation practice got me through some very long, scary nights. I had people praying for me and sending me healing energy, and I could feel their caring from afar. Unfortunately, the operation at NIH was not a success, they were unable to find the pit tumor and further surprised me by saying that the original surgery had not removed a tumor, at all, that the path report had shown only normal pit tissue removed. ---now I knew why the first neurosurgeon never returned my calls!
Now I was left with decisions on where to go from here. NIH recommended traditional radiation, but I wasn't so sure…also, I needed a new endo-I was able to get an appointment with Carl Malchoff at UCONN, and he helped me with my decisions that summer….we had a choice of an adrenalectomy or radiation, but since the radiation can take 6 months to 4 ½ years to work, I needed to be on medication to block the cortisone in the meantime…I went on ketacozanole and metopirone, but I needed such large doses that they were causing liver damage, so I opted for a laparascopic bilateral adrenalectomy, followed by gamma knife radiation at UVA to prevent Nelson's Syndrome. This was completed all by December of 1999. I was out of work for 1 year while I recovered my strength. I worked for the next year 2 days a week, and for the past 2 years, 3 days a week. I lost 15 lb. after the adrenalectomy, but still had poor muscle tone, was fatigued and overweight and could not think as clearly as before, and I required 12-1 3ours of sleep a night. I waged a year long battle with the insurance company to cover genotropin for me, and after I started this, I lost another 10 lb., and felt much more energetic, and my brain cleared up.
My life is now great. I am 52 years old, and I am able to do anything I want…one daughter is married, another is in college…two weeks ago I was hiking in the Grand Canyon + Sedona with my husband. I went on the South Beach Diet a month ago and have lost 13 lb., so am nearing my pre-Cushings weight. My thinking is clear again…except I have trouble with names of people and flowers. Meds that I now take include Cortef (10mg 6:00am, 5 mg 12:00, 5 mg 5:00), Florinef (0.1mg), Synthroid (.1mg), Estratest, Prometrium, Genotropin (0.4mg).
So…..what have I learned from this disease?
I learned to live in the present moment. I learned how wonderful people are. I learned to be kinder with myself, to not expect perfection. I learned that it's OK to say "no". I learned to respect my limitations. I learned how much people really care. I became a spiritual person. I learned that everything doesn't need to be done "now". I learned about myself. I learned that it's OK to ask for help. I learned to not be afraid. I will be happy to correspond with anyone who is struggling with Cushings.
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