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Cushing's Chapter of My Life
"What was wrong with me?" Around 1995 my body was going through some kind of change. I felt mildly depressed at times, but I guess everyone experiences this some time or another in his or her lifetime. My ankles and legs were swollen 75% of the time. I'd go home at night and my legs looked like sausages. My hair was getting so curly, usually you lose your hair, but not me. I also bruised easily, really easily. I was gaining weight, must stop eating! Symptoms were moving slowly. Five years went by, boy, this menopause is for the birds! I was 52 years old and still having my period. I have an identical twin sister (DNA proven identical) who was a teacher and enjoying her life and menopause (as much as you can!), why wasn't I?
I started seeing a doctor and was put on Prozac in 2001. It helped, but I still had all the swelling, moodiness, weight gain, and depression. I went back and forth to my Internist for a couple of years not feeling well. I knew something was wrong besides menopause. You know your own body. Try telling some doctors this! It got so bad, my sister insisted that I see my doctor, and she went with me. I couldn't even handle the office visit. I looked terrible, old, and felt it!! She had had it! I thank her for making me realize I needed help. Being identical twins, there is a certain bond. She was hurting deeply for me. We've cried together a lot of times through this time in my life. I thank God everyday for her!!
My Internist (no help to me in all this by the way), had her doubts since all regular tests on me came back normal. However, she had me see an Endocrinologist she knew and I have a feeling indicated to him about her doubts that anything was wrong with me, except for menopause. From day one with me he was disrespectful to me and treated me like a case number instead of an individual. A very intimidating person. He sat down with me after a few minutes and asked me why I was in his office. (Needless to say, that was the last time I went by myself to see him.) He agreed to give me some tests but said he did not expect to see me again.
One month later, I received a phone call from him. I forgot who he was, because I was getting nowhere with this. He said he was shocked that I had a very, very and dangerously high cortisol level. I had to get some more tests done and soon! I let him know that he made me feel like a hypochondriac in his office. No apologies from him, just stated that that's what he was there for, to check things out. No kidding!! MRI tests revealed a pituitary tumor and I also had a mangianoma (benign tumor on my brain lining). I had Gamma Rays about 6 months ago for the benign tumor.
Wow, I was devastated!! Found this out at work. I felt like I was losing control and went into even more of a depression. Thank God for sisters, my husband, family and friends from this point on. I couldn't mask my pain, I'm no good at that. I always wore my heart on my sleeve. Everyone knew something was wrong with me. They wouldn't ask me, but they would ask my husband and sister. Well, a year of tests (one test was $22,000.00 to locate the exact place of the tumor). Later, I had brain surgery on 9/1/04. I couldn't imagine brain surgery! All my life, I was always in the best of health! I was in the hospital for 10 days, Intensive Care for 6 days, it was suppose to be only 2 or 3 days. My levels were constantly changing, up and down.
I switched Endos after two post-surgery visits. He was so intimidating and with no sympathy or empathy at all. It is a rough recovery. I found out later by other doctors that I wasn't the first to note this and change doctors. My Endo today, Dr. Dominic Corrigan is my guardian angel and has helped me tremendously through my recovery! A sweetheart!
I'm on my way to a better life and to me now, "Life is great!" I'm a different person now. If I can end with two pieces of advice after all this, they are;
One -You know your own body, you're the only one that can tell there is something wrong with it. Have perseverance, you're not "spinning your wheels", it may seem like that sometimes, but stick to it.
Two - Make sure you have the best endocrinologist. You're going to be spending a lot of time with him. Best to all and please, I am here to help anyone else who may need it.
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