“God, when we meet you are going to have to explain why I had to endure this.”

54 years and still moving forward...

Always hungry…

For me autoimmune disease has been a long journey, often forcing me to look to heaven and say “God, when we meet you are going to have to explain why I had to endure this.”

When I was 6 years old, my mom noticed I was eating sugar from the sugar bowl and was continually hungry. I also developed a tremor and complained about being hot, and I was always tired.  The first doctor my mom brought me to see told her I had “mental” issues. That just angered my mom!  She found another doctor, and following a visit to a hospital and an examination by specialists, they diagnosed me with Graves’ disease.

At that time, my mom was not aware that Graves’ disease is an autoimmune disease.  

I managed to live OK with Graves’ disease, but when I was 17, my blood glucose started misbehaving.  After 2 glucose tolerance test and many X-Rays to look at my pituitary gland, I was diagnosed with type 1 diabetes.

“Hey God, what the heck!!!!”

I had huge energy demands, and my family and work colleagues watched as I ate large amounts of sugar, sweets (candy) and high carb foods. My mom was worried. My uncle had died 6 years earlier from an extreme event (I’m not sure what is was). He was a type 1 diabetic. My mom quietly started the whole family on a diet suitable for a type 1 diabetic. News also got through to my colleagues at work and the scrutiny of my diet was intense. I became really good at sneaking in extra energy during the period before my thyroid was removed. My thyroid was removed when I was 19.

Heart disease, asthma, and more

But a few years down the road, my heart dived into the fray: I was diagnosed with supraventricular tachycardia*. Nobody was sure if it was related to any of my other conditions, but it was not fun. I got treatment in April 1994 and at least that problem was solved.

I then developed asthma and often wonder if this was the precursor to being diagnosed with rheumatoid arthritis (RA) when I was 56. I initially though I was suffering nerve damage from the diabetes even though I had been in great control of glucose and insulin levels. That was overturned by my endocrinologist. My primary care doctor, an astute and experienced man, quickly discovered I had RA and I went directly into treatment.

The interesting outcome is that prior to treatment for RA I had many events related to the asthma. Since I started treatment for RA I have had not and the asthma and diabetes is considered well controlled.

A long and difficult journey, but moving forward

Autoimmune disease has been a long and difficult journey for me and my family. I have not allowed it to stop me reaching most of my goals. Being positive all the time has not been possible and I have been diagnosed with major depressive order. This is also well managed now and thanks to my fantastic wife, I have committed to continuing to move forward.

Being able to share this story helps me, and I hope others facing the same challenges realize that people with severe chronic conditions can thrive, and I am grateful for that.

* Supraventricular tachycardia is not an autoimmune disease, but is associated with autoimmune diseases, especially rheumatic fever