December 2, 2010 was my last post about my husband's recovery from lymphoma and leukemia. Charlie has been doing well; in fact, he has not had to go to the oncologist for almost four years now. At 58 years old he is still working in a very physical work field that the doctors never expected him to return to. Many say he is a walking miracle.
The entire time Charlie was battling lymphoma and then leukemia I too was battling with what we now know is a pituitary tumor and an adrenal tumor. Most doctors then thought it was high blood pressure and panic disorder. No medicine was able to get it under control very well. Only those closest to me knew about it. When doctors don't know what is wrong with you they often put labels on you which they did in my case. After a while I even at times believed that they were right. But I now know they were wrong. After almost countless doctor and ER visits I found an endocrinologist miles away in California that found the pituitary tumor and told me that most likely I had some form of Cushings (either Cushings disease or Cushings syndrome). Cushings disease is caused by a pituitary tumor. More than likely I have cyclical Cushings disease which is a form that causes low, high, and normal cortisol which makes it very difficult to diagnose. Cushings syndrome is caused by an adrenal tumor. My doctor thinks that my pituitary tumor came first and then caused the adrenal tumor for me. The only cure for this disease is God curing it or surgery to remove the tumor. At this time I am still testing. I have had very high cortisol at times. I am doing multiple tests and when my endocrinologist thinks I have enough highs he will send me to surgery for removal of the tumor. The surgery is risky and we have to know for certain that I have Cushings disease and not just a non-functioning tumor. I would want my Lord to take it away so I would not have to have surgery, but sometimes it can be God's will for surgery.
It is humbling to write about this disease in me because so many people misunderstand it. A person with it usually gains lots of weight in spite of diet and exercise. The high cortisol released from the tumor causes this. If excess weight was the only and most serious symptom it really would not be so bad. There are a lot more serious problems than being obese with Cushings. It can cause heart disease, high blood pressure, anxiety, diabetes, kidney stones, osteoporosis, blindness, DEATH, etc. I think I have had this disease for over twenty years. Many people do go that long with it without being diagnosed. The last eight years have been particularly difficult for me.
I have decided to start writing in this blog again so that maybe I can help someone just like me get the help they need. Most likely if a person is diagnosed early with Cushings they have a better chance to fully recover. Even if a doctor tells you nothing serious is wrong with you, if you know that there is, find the help you need. The beginning of my way to recovery was when I found a large group of people just like me on www.cushings-help.com. Cushings is called a rare disease, but to be more accurate it is rarely diagnosed. If I could help one person from going through what I went through for all these years it would be worth all the time I spend writing in this blog.
So now my role as a caregiver for Charlie is over. This disease has progressed to the point now that I can barely stand for 10 minutes. So, Charlie now takes care of me in so many ways. I guess it can be said that our roles have been reversed. The Lord has been good even through this. HE has a reason for allowing it in our lives.