United States

From 2008 to about 2011, my mobility started to slow down. I was starting to get the internal issues, like the scarring.

I had real bad acid reflux, to the point where I haven’t laid flat to sleep probably since 2009. It was that bad, even with medication. I also had stomach ulcers. That was probably one of the hardest things because I confused it with the acid reflux, but it actually burns holes in your body. That probably made me lose the most weight. I dropped 30 lbs in a couple of months. 6’6”, 200 lbs is already skinny, but to lose that 30 was real bad. I was also anemic.

I had finished college in Oregon, gone back home and gotten diagnosed in the Bay Area, then moved back to Oregon because of my work and health. Again, the doctor in Oregon was telling me it was more serious than I was taking it. She said, “Look, you gotta take care of these issues.” She did the same thing. She called me one day. The first time, she said she needed me to take the day off and go get some labs or something.

I didn’t listen to her, but at that time, I was starting to faint just walking maybe 15 or 20 feet. I started having that issue in the shower, where I wouldn’t last in the shower long. I got a chair just because I couldn’t stand up.

She called me later that day while I was on my way to work and said, “We got you a bed at the ER.” I just said, “ER??” I never even knew they could order a room for you at the ER. She told me I was at risk for a heart attack. My reaction was, “Well, let me go to my job and tell him this is what’s going on.” But she told me, “I don’t even think you should be driving. You need to pull over and call an ambulance.” Those were the first couple of issues.

Then all of a sudden in 2011 and 2012, I started getting very physical issues.

My fingers contracted, and so did my knees, my hips… all of my joints except my feet. My feet stayed fine, but my skin was so tight. You could see it pull from my thigh up to my chest. I couldn’t open my mouth maybe more than four popsicle sticks. My elbows contracted. My shoulders subluxed – which means partially dislocated, so it was like still on the joint, but kind of off. It happened to both shoulders; anything that happened to one side happened to the other. Anything that contracted on my left side did on my right as well. My fingers are all contracted, but my thumb and pinkies are dislocated on both hands. My elbows do not straighten either. They go probably a little past 90 degrees. I also lost more weight. In March 2012, I remember getting stuck on the bed and thinking I couldn’t get off. I thought I would have to jump off or roll off. That was probably when it was at its very worst. I could barely move.

In January, I could reach on top of the freezer, even though it was a struggle. By March, I even couldn’t reach inside of the refrigerator. At that point, I was starting to load up the sides of the doors or not put anything in the fridge.