I had gone for a yearly exam around my birthday as I always did. I was not looking forward to it as my doctor was the kind who gave you the brush-off if you complained about anything. This year I was lucky I guess. I got his substitute. This doctor noticed my hand. I placed a tissue on both hands. My tremors were so bad that day that the tissue fell off right away. This doctor ordered blood tests to be done immediately. He personally called to let me know I had Graves’ disease. I did not have a clue what that meant. How serious was this? Was I going to die? He told me a little about it and advised me to check out the Mayo Clinic on the Internet.
Thanks to this doctor and not my regular one, I quickly found out I was hyperthyroid. I started to lose weight, was depressed, had terrible mood swings and my heart was racing. Just to name a few symptoms. Then I got a goiter. It grew to the size of a tennis ball. My endo ordered a biopsy after a scan showed dark spots on my thyroid. He then advised radiation treatment to be performed as soon as possible. I had a history of panic attacks whenever I had surgery because I had once gone into a coma for a month after an adverse reaction to an anesthetic. Fearing this was cancer, I had the radiation. I was very naïve about all this and my doctors were not the best at communication skills.
I took the radiation pill and soon after the goiter was gone and I went hypothyroid. Now I was gaining weight, was sluggish, depressed, my hair came out in clumps and much more. I did not need to be told my journey was far from over. In fact this journey would never be over. I was sleeping so much yet not resting well at night. I was hot. I was cold. My body could not make up its mind. I thought I was going crazy. I think my family did too. By now I understood that this disease was treatable, but not curable. I also realized I was not going to get the answers I needed from my doctors to enable me to live with this disease. After five years, I was on my fourth doctor. I decided to research and find out as much as I could.
This was getting harder as now my eyes were protruding and tearing. I was seeing double. This was meant I was seeing with one eye up and one eye down. Now I had Thyroid Eye Disease to top everything off. I not only felt crazy, but looked crazy. With all the other symptoms and now this I was turning into a hermit. Friends and family thought I was on drugs or drinking too much. I fell a lot when my legs would just give out. I cried a lot, for no reason. I blew little things out of proportion. I could not work or drive any more. I found it hard to remember things. Now I find it hard to even spell. I can’t spell a word and sometimes spell backwards. This is still very frustrating. I knew I was not easy to live with. I felt so helpless and so lost. The only thing that seemed to help me feel better was to live a quiet life. I seem to do better when I am not around a lot of people. This was hard for me to accept as I was very involved in my organizations and public speaking engagements.
It is now thirteen years and nine eye surgeries later. I was lucky to have a very understanding husband. Who knows how sick I would be today if not for his understanding? I try to hide my symptoms and try to control them. The medication did not seem to help much at all. Some days I am just so tired, both mentally and physically. But I know I have to keep trying. This is the reason I started the Graves’ Disease Coffee Break, which involves thyroid patients and their friends and family uniting in an international coffee break in order to feel less alone. It started out being me just wanting to take a break from my thyroid disease. Now I have others joining me. We cannot let this disease control our lives. I will not let it control mine. I am taking a Graves’ Disease Coffee Break.