MAC Region: J8WPS
Tell us a little bit about who you are apart from your illness. I am a 59 year old male living in Indiana. I have been married for 39 years to Sheryl. We have two sons I love more than life itself, and three grandchildren by linage and three by marriage. The grandchildren are the best. I suggest everyone get some.
What is your diagnosis and when were you diagnosed? I have RA (1999), Ankylosing Spondylitis (2016) and Type 1 Diabetes (1974). I was feeling bad and I told my endocrinologist who ran some tests and referred me to a Rheumatologist. The Rheumatologist gave a straight forward on the spot diagnosis.
Can you talk a little bit about your experience with diagnosis? I was shocked. I had no idea. I asked my endocrinologist after two things happened.
First, my son bought a great new car a 1999 Trans Am nicknamed the beast. The car was magnificent and he came home asked if I would go for a ride. I could not get in the car. He was upset with me because he felt I was dissing him. I was not, I just could not get in the car.
Then, I accompanied my other son on a college visit to my alma mater (Indiana University). I wanted him to attend, I love this place. When the tour started I could not walk with them. I had to sit in the visitor area and wait for him to return. I was so embarrassed. On the way to and from the campus I had to stop to get out of the vehicle. I was in so much pain I could not understand my issues.
After I was diagnosed I was in complete shock. Good grief I had something, I did not need something else.
What is your greatest challenge in living with a rheumatic disease? Giving up my job. I love working and I loved my job. In 2008 I had to give it up because I simply could not keep going. Fortunately, I did qualify for disability but I still want to work. It has been painful to give it up. I think men in particular gain identity from the work we do. When I stopped working I lost my entire identity. I no longer knew who I was and even to this day I do not know what to say when people ask what I do for a living. I used to have a clear understanding of who I was, now I have no answer.
Describe something that keeps you hopeful in the day-to-day struggles with your illness. I love having a purpose, I love feeling like I am making the world better. When I think about life without purpose I cannot imagine not having the greatest purpose possible.
Why is advocacy important to you? Our grandchildren drive me forward. My mom was a person with type 1 diabetes, when I was diagnosed in 1974 she said she hoped my life then would be better because of her efforts on behalf of diabetes. Today I stand on her shoulders. I wear an insulin pump, she took part in pump trials in 1971, I see the advancements in laser eye surgery; she had some of the first laser eye surgery in the State of Indiana. And she had experimental eye surgery which now is fairly routine in the diabetes community. Mom lived until age 46 and had diabetes for about 22 years of her life. Today I am 59, I have had type 1 diabetes for 42 years. I wear a pump on my belt and it is common to see people live 70 years and more with type 1 diabetes.
I stand on her and others shoulders who invested in research and advocacy to make my life better. For years I have advocated around diabetes and when I was diagnosed with RA, I wanted to do the same. Not for me. I have no illusion I will have be healed of diabetes or RA any of the rest of it. But I do think my efforts in both communities will make life better for my grandchildren or their children. Someday I want them to say I stand on the shoulders of my grandfather. If I can do this, I will have fulfilled my purpose.
