Our oldest son texted this photo to me last week with the captain, “I forgot how sick he was. This is bad.”
The photo shocked me. I had forgotten too. It was taken on his 44th birthday. He weighed about 170lbs at the time. The change to his body happened quickly. It was eery. His heart rate was averaging out at about 100-110 in those days. He would shake so badly we thought he had early onset Parkinson’s Disease.
Life changed for us pretty drastically in those days. Every day he woke up was a celebration but also a new ailment would pop up.
It was almost three years ago today that he swallowed that radiation pill that ate away at his thyroid. We were so relieved, thinking that he would be able to take a pill everyday and be back to normal, but then his eyes started hurting him, and his vision changed.
We learned about TED by reading the Internet and talking to his endocrinologist. We also learned that this disease will never go away. There is no cure, and there is no healing. There is remission, but he will never have that option now that his thyroid is gone. The radiation was the only option for him though, so it was a good decision. He is severely allergic to Methimazole. His reaction was so severe that the doctors were not willing to try any of the other meds. At the time he went in for his surgery consult, his thyroid was so swollen, the surgeon said no surgery. He couldn’t live much longer with no treatment, so we took our last available path. It is what was best for him.
So, this Friday, he checks in to surgery at 1:30 pm. Our daughter, and my father-in-law will be with me while he is in surgery. Here are some before photos:
Here, you will notice how his eye looks rounded in the socket, and it is protruding out causing a “dimple” at his temple. That dimple is usually filled in by our eye ball. His is out of the socket, so it is inverted. If you look at yourself in the mirror (and you don’t have TED), you will see that your eyeball is set into your face. Here you can see that his are protruding out of his face.
I am going to try to have my iPad up and running at the hospital. David thought it might be interesting to “live blog” our day on Friday. Hopefully I’m not too scatterbrained.
Thank you for coming along with us on this journey! See you on Friday!