Living with Graves' Ophthalmopathy

I was having vision problems, thought I was just having a “funky ” migraine. It went on for several weeks. In the morning I would wake in pain, sometimes looking quite like Frankenstein from the swelling in my face. I was still not alarmed, having enjoyed good health all of my life I really had no fear that it could be serious. I also got a swelling in my left leg, the foot and lower leg got quite big, but again, I wasn’t too concerned!

I went on a trip with friends to San Francisco and we were walking around down by the pier. One suggessted that we go to this resturaunt that was quite a few stairs to climb. I stated that I didn’t think I culd make it up the stairs and we all just said “Oh OKAY” Instead of Lori what is WRONG with you?? I was 42 years old and could not climb stairs?? We got home to Minneapolis and I did then go to the DR regarding my eye pain and light sensitivity.

The first doctor told me she thought I had some kind of macular degeneration, which scared the willies out of me. (She never even touched my neck) I was bac and forth with her for awhile and when ther was no clear diagnosis I went to an opthomaogist. He was a wonderful Doctor and after the exam of my eyes he asked if ther was anything at all abut my body that was a concern to me besides my eye pain. I told him about my “big fat foot” He looked and said OK’ just a minute ” I heard him go into the next room and get on the phone to make an appt for me at another doctor’s. I heard him say he would like a test to rule out Graves disease. I cried. I knew something about the terrible disfiguring of this eye disease. My uncle had it and he looked terrible.

I was by this time so self concious that I would put my hand up to my face when a car would pull up next to me at a stop sign so the person driving in the car would not see that I looked like a Bullfrog. I also had gained weght at an alarming rate, About 60lbs in 4 months.( I thought we were supposed to LOSE weight!) My eyes were quite protruberant and very disfiguring. This , plus the weight gain, contributed to a huge depression that overcame me. I began reading about Grave’s and in one article it said that 60% of people who had it died from it. I was happy - I thought “good, this will kill me” Then the article went on to say that figure was from the 1800’s!

I had two wonderful doctors, they took good care of me and when my eyes became dangerously painful, I was liicky enough to have radiation therapy on them. Within weeks they became less bulgey. Less painful , too. I still suffer from painfull vision and light sensitivity.My eyes still don ‘t look like they did before the Grave’s. But at least I don’t look like a Bullfrog anymore. I pray I don’t have another “hot” episode. I would still like to have the surgery on my eyes to alleviate all the pain.