And It's About Time There Was Some Support For Cushing's!
March 28, 2006 - My Cushing's road is a long one which started in 1998 when I noticed that I wasn't digesting food as I used to. I have always been a very thin adult (5'6" and 105 pounds) who could eat or drink anything without gaining a pound or feeling bloated so when I started to get bloated in my hands every morning it was quite strange for me. Looking back, I realize that it was about that time that I started having a depressed personality and a very short temper.
I have two wonderful boys, ages 11 and 14 and when this all started they were 3 and 6. Slowly I started losing patience and needed to put myself into "time outs" so that I could control my emotions.
During 1999 and 2000 I started gaining weight but because I was so thin it really wasn't noticeable. When I look back at pictures I can now see that my moon face began to form quite early in my disease.
From 2000 to 2002 things became worse. I became an insomniac and then was exhausted during the day. Because I am a type A personality I tried to compensate by taking on too many responsibilities, thereby increasing my stress levels. I never felt like myself anymore. I wasn't happy, I couldn't sleep and I was bloated. My periods were getting farther and farther apart. The only good thing that had happened was that the migraines that had plagued me during most of the 1990's had completely gone away.
I now realize that my increase in steroids was poisoning the rest of my system but was actually preventing my migraines. In 2002 I fractured a rib in two places during a minor fall while skiing. It seemed quite odd to me at the time because I wasn't skiing fast and I didn't fall hard.
In 2003 I had my first cholesterol test as part of my annual physical - surprisingly for a "thin" person it came back very high. At this point my weight had creeped up to 119. My blood pressure, which had been very low for my whole life (even while I was pregnant) started getting high. My doctor put me on Lipitor and told me to exercise. And exercise I did - I stopped eating carbs and exercised five days a week. All I did was put on more and more weight and sleep less and less. I was loosing my hair in clumps - I used to have beautiful long thick hair. To add insult to injury I was growing facial hair and getting rolls of fat around my waist. My arms and legs were getting thinner so I looked quite odd. I had this odd bump on the back of my neck and had grown a double chin. I weighed about 123.
In 2004 my father died and this was a very stressful time for me. I spent many weeks traveling between my family in Hartford and my father in New York. I knew at that point that something was seriously wrong with me but my doctors attributed my issues to the death of my father and middle age. I started needing to eat all the time and I couldn't get enough sugar. I would raid the refridgerator at midnight and go through tons of ice cream. This was so foreign to me - I had never needed food before and now I couldn't stop thinking about it.
In the Fall, 2004 I was diagnosed with diabetes and my blood pressure was dangerously high. I was put on Diovan (a blood thinner) and a diabetes med. My periods stopped completely. My doctors were still attributing my problems to middle age. The diabetes was explained away because I was a gestational diabetic with my pregnancies and there is a huge overlap of gestational diabetes and diabetes II. My mom has high cholesterol so that was explained away as well. It seems that well meaning family members fell into the trap of trying to minimize my problems "to make me feel better."
In 2005 I was so ill that I could no longer work more than an hour without becoming completely exhausted. I went to two endocronoligists in Hartford who thought I was too thin to have Cushing's so they didn't bother to test me.
In April, 2005 I hit critical mass - my blood pressure was so high (even on Diovan) that I was almost hospitalized twice. Finally, I went to my GP who took one look at my now very round face and told me that I had Cushings. He had me in immediately for an MRI which found a 3cm. tumor on my left adrenal gland. I made an appointment with an endocronologist at Yale Hosp. in New Haven, CT but I couldn't get in to see her for four weeks.
Finally, I had blood tests which showed that I had cushing's and I was scheduled for a laporoscopic adrenalectomy on July 14, 2005. I couldn't get in to see my surgeon of choice because I didn't weigh over 140 pounds even though I had diagnosed cushings and had been suffering for 7 years. But the fun was just beginning. Unfortunately for Cushing's patients who have been undiagnosed for years, it is easy to want to believe that the "cure" is the surgery. One doctor told me prior to surgery that I would have to be patient for the symptoms to go away but NO ONE told me that I would suffer from steroid withdrawel syndrome and feel worse (if that is possible) post-surgery than I did pre-surgery.
For six months after my surgery I was nauseous, exhausted, depressed and started suffering from significant cognitive impairment. My endo at Yale was tapering me slowly, and tried different types of steroid, but none of them have helped. My right adrenal is still completely inactive and it seems like this will never go away. My body is back to it's pre-cushing's size but my mind, which actually used to be quite smart, is failing me. The depression is exhausting and never ending. I have turned away from my friends who can't possibly understand what I am experiencing and I don't really see a light at the end of this very long tunnel. I am going to a neuropsychologist this week to try to get a handle on the damage to my cognitive functions. If this story sounds familiar to anyone I could really use your support.
Thanks,
Linda
