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I am forever indebted to CSRF for the wealth of information and support they provide via the newsletter and website. Without this information and support I would not have gotten through this critical time in my life. Therefore, I am writing to offer my support to other Cushing’s patients. This is a condensed version of my story.
In the spring of 2004 I was diagnosed with Cushing’s disease at age 52, and it was guessed I had had it for approximately 10 years. A tumor was found in the right side of the pituitary gland, and more than half of the gland was removed in September of 2004. Also, it was discovered I had degenerative scoliosis / degenerative disk disease and stenosis in 2001, and the degenerative condition was rapid in a year’s time. I underwent major back surgery in February 2002. Although Cushing’s did not cause the scoliosis it significantly contributed to the rapid degenerative state of my back.
At this same time it was discovered I had osteopena, and in the fall of 2002 two broken bones were discovered in my right foot. It was guessed that I had been walking on the broken foot for more than a year, and the breaks were not healing. I underwent several non-operative treatment plans with no success and finally succumbed to surgery in the spring of 2003.
I had all the classic symptoms of Cushing’s - moon face, buffalo hump, weight gain, weakness, fatigue, acne, bruising, high blood pressure, lack of vitamin D, brittle bones (I had broken several bones in this 10 year period), depression, agitation, anger.
Coming off of the high doses of hydrocortisone created steroid withdrawal. Symptoms include, but are not limited to, extreme fatigue, muscle/joint weakness, headaches/dizziness, nauseous feeling/loss of appetite, sleeplessness, mood swings, confusion/lack of focus, memory loss/forgetfulness. While the physical symptoms are quite debilitating, the emotional upheaval has also been severe. I went from a very physically and socially active person to reclusive, afraid to drive but locally. Angry was my middle name, and it was directed at anyone without reason. I am still working through my emotions and trying to accept my life now with its limitations.
I am off of all hydrocortisone and am told that I am “cured” of Cushing’s. However, I will be regularly monitored as several tests have shown high levels of cortisol. I have been told that Cushing’s is one of the hardest diseases to cure. This has been a long 1-year and ½ of recovery, and I am feeling much better now.
To all who are going through this physical/emotional upheaval I hope this will help, and you will realize you are not alone. I cannot stress enough the importance of educating yourself. You will more than likely need to educate your doctors. Take charge of your own health and accept the changes in your life.
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