My Story

Hey all,

Never really did this before. Well, what I mean is I never sat down and told my whole story. I guess I never wanted everyone to know. In part it is because it's not a happy story. I was diagnosed July 7th 1985. Looking back I had all the symptoms. But after loosing my lunch after drinking a can of Tahitian Treat I ended up in the ER with a glucose reading of 840. There were trying times there at first but we got it under control. By the time I was 15 I had had enough. I was tired of being told when to eat, what to eat, how much to eat. I started not caring anymore. That is a decision I regret everyday now. I drank Pepsi. I ate Little Debbie and Snicker bars. It was great at first. Then I started getting sick. Many bouts with Ketoacidosis and lost weight. But after being diagnosed with Depression I started to get back on track.

Then at the age of 17 I was on my own completely. This time I totally got out of control. I would drink a couple 2 liters of pop. Ate large amounts of sugar cereal and not do any fast acting insulin. That September I had Ketoacidosis 3 times. Not to mention the Cellulitus from a syringe I dropped on the bathroom floor and still used. The next couple years I pretty much pretended like I was normal. I don't think I tested my glucose for 4 years. I went by the old system of how I felt. I didn't know it but my body was getting used to the higher glucose levels. Suddenly 400 felt like 150 to me and 200 would feel like a reaction. I couldn't see it but I kept losing weight and always looked sick and pale.

in 2004 I tried to go to the Job Corps program. Of course I had to go through all their medical test. That's when I found out about the protein that was spilling out. The early signs of kidney damage. This also when the Neuropathy began to get worse, along with the Gastroparesis. That last one has been a bigger problem than I thought. I fought hard and got my A1C down to 7.7 from 12.1. I had to hire an attorney and threaten to sue just to get in. They said I had to have an A1c of 5.5 to be allowed in. Needless to say I won. While I was there it was a never ending battle with a medical team that didn't have a clue. I still get mad when everyone treats me like I'm a type 2. Then I was almost thrown out after I was diagnosed with Retinopathy. I had to go and have laser every other week for 3 months, plus a major one where I had out patient treatment in the hospital. 

Four months after I left Job CorpsI was working full time and went to college full time. That's when, because of a mistake with the state, I lost my insurance again. This would be the beginning of the worst time in my life. I started getting Cellulitis everywhere. I had to go back on the older cheap Insulin. By the fall fall I had developed infections in both my heels. I went through 5 rounds of antibiotics and almost lost my foot. A few weeks later I came down with the flu and took a couple weeks to get rid of it. 

I started feeling better. That lasted 2 months. By August severe muscle pain in my neck, shoulders and upper back. It was the worst pain I had ever felt. I could barely hold my head up and couldn't even turn my head. Then I would get light headed and almost fall over every time I would stand. This was the time my stomach had started to shut down. I lost all feeling in my bladder. Week after week it just got worse. I'd get through the week and then end up in the ER every weekend until I was unable to even get out of bed. I started having black outs and seizures from low glucose. In December I had 6 of them. Then I had what the doctor said was Transient Global Amnesia with Paralysis. Nothing like waking up and not being able to move any part of my body except my eyes. 4 horrific hours of lying there. Two weeks after that I suffered a mini stroke which was a traumatic event for me to. A week after that I started coming down with pneumonia. Took almost a month to recover. That is when I realized that I just couldn't work anymore. That was the hardest decision for me to make. I always loved working. I took pride in my work. 

After running out of savings I had to break down and say I needed help. I called my mom many times saying I needed help. A week and a half later she called me back. I know now that she just didn't want to help me and would have left me to die on the street. I lucked out and my step dad came and picked me up. I still remember the look on their faces when they arrived. By that time my weight had dropped to 115 lbs and could barely walk.

It took 6 months become stable again. Along with a insulin pump and continuous glucose monitor. And physical therapy twice a week along with re-education on how to eat and do insulin. I thought things would be OK for a while. Now I take 20 medications and powders and gels. With Neuropathy, Retinopathy, Gastroparesis, High Blood Pressure, Autonomic Neuropathy, Neuorgentic Bladder, Fibromyalgia, Anemia, degenerative Arthritis, PAD and Stage 4 Kidney Disease it's all a little much sometimes. My days are filled with phone calls and paperwork. And the state and insurance companies and doctors, home care nurses and phys therapy. I'm 30 years old and have to face the fact that I don't have many years left. 

The last month it's been in and out of the hospital because of kidney issues. My kidney function fell to 18% and my potassium rose to almost 7. Normal is 3.5 to 5.5. While being rushed across the street to the ER, my heart stopped for 3 minutes. The treatment for high potassium is insulin flush. Thanks to their mistakes I was in and out of it for hours. A couple days later I was back in the ER cause of more kidney issues and a major infection in my digestive tract. I only say all of this for one reason. I don't want anyone making the same mistakes I made. I try to show other diabetics what can happen and it;s not a pretty picture. When you get sick the world is pretty lonely. People call less and less until nobody does. The only interactions you have are on facebook. It's hard to explain to people why you can't do something that day. I give every ounce of energy to working my 2 shifts.

Hopefully my next post will be a little more upbeat.

Mark