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This letter is written not only to tell my 'Cushing's' story but to officially thank Louise Pace for organizing the Cushing's Foundation to provide support and promote awareness of this very dreadful disease and for helping me in particular by guiding me to the proper treatment that saved my life. My tale only adds credibility to the need for urgency to make the public knowledgeable early on of the symptoms that could save a victim years of agony trying to find a diagnosis and for the medical world to be more ambitious in recognizing these symptoms so treatments and cures could be facilitated and lives saved.
Until I was 48, I was super healthy, athletic, hard-working and ambitious. I was a single mother, raising two teenagers, working full time and staying in top physical shape playing tennis, jogging and exercising daily. Then little by little things started falling apart, starting with a stress fracture of my ankle in about 1992. Then I started getting un-healing wounds that turned into ulcers, my skin ripped off like an onion, and I noted the appearance of facial hair. A few more doctors later and still no one made a diagnosis and quickly referred me on to other specialists…to no avail. Obviously I knew something was wrong and I started getting quite frustrated that no one could figure out the problem. By the time I was making a move from New Jersey to New Mexico in 1999, I noticed I was losing my muscle strength and was having trouble lifting boxes and climbing stairs. Then after a year in New Mexico I was in really bad shape and was told by several doctors that I better get back east where supposedly there was better medical care. At this point my arms and legs were pencil thin and covered with bleeding ulcers, my weight had shifted to my belly, my face was getting distorted and roundish, my cheeks reddened with broken vessels like a severe sunburn, and my internal thermostat was screwed up - I would be cold in a hot room and visa versa. Unfortunately just coming back east didn't solve my problems and I went bouncing around to several more doctors before one finally thought of Cushing's and recommended the urine tests that showed my cortisol was almost 800. Then more time was wasted because the radiologist failed to see the 7mm pituitary tumor on the first brain MRI and spent 8 months looking for an ectopic tumor. Finally my third endocrinologist saw the very evident tumor but for some reason wasn't convinced that it was the culprit and wanted to remove my adrenals to stop the cortisol production even through the adrenals had no tumors. At this stage of my disease I had high blood pressure, was losing my memory and sensibility in general, was easily confused, could not understand instructions, was disoriented in time and space, and my speech was getting jumbled. It seemed my mind and body were always revved up in fast drive and I truly felt like I was ready to explode. But somehow I had the presence of mind to question this doctor's advice to remove my adrenals and this is when Louise Pace stepped in to tell me to get yet another opinion. Fortunately through the Internet I found that the National Institute of Health in Bethesda was doing research on the testing for pituitary Cushing's and I was accepted into their program at the eleventh hour.
Dr. Lynette Nieman at the NIH confirmed the pituitary tumor and Dr. Oldfield removed it in January 2002. I wish I could say that was the end of my problems. Besides being on the hydrocortisone for 19 months with at least 4 months of agony weaning off the medication, I am now trying to put together the pieces from the damage done by the high cortisol. It literally ate my bones away and left me with a deteriorated ankle which was fused in December 2002, several collapsed cervical vertebrae which were fused in November 2003, two hip fractures that leave me walking with a cane, and such a severe collapsed scoliosis of my spine that I lost 3"in height and at this point don't know if surgery will even help the pain and deformity. Humpty Dumpty was in better shape than me. But despite the years lost to Cushing's and the permanent damage I am suffering, and the fact that I will probably never be able to work again, I can still say I am so thankful to be here to tell my story. I certainly have had to make adjustments to my lifestyle but at least I have that life to adjust. It's bad enough having Cushing's but no one should have to waste years of their life going to 30 doctors to find their cure. More people like Louise Pace and those at the Cushing's Foundation deserve everyone's support in their efforts to change the situation. I hope my story helps in that endeavor. Also, I would appreciate hearing from anyone who had similar bone problems, in particular if anyone could share their results of a lumbar fusion, which I am considering.
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