September 2005 - I Gave Up

Not much has been happening the last couple of months. One thing I have found about Dermatomyositis is that the disease will cause a lot of other medical problems. On top of fighting the disease there are a handful of other medical conditions that I had to deal with.
There has still been a lot of pain, I still have bad stomach cramps, so I was not eating. This month was my darkest month, I GAVE UP.
My weight was below 120. I would sit in a chair and watch TV, or sleep all day. I was slowly dying, and I believe that I would not be writing this if Kim did not fight for me.
One day I was sitting on my chair, depressed, ready to die. Kim came to me with tears in her eyes, and told me that she knew I did not want to be here, but please fight for her and Tyler.
She saved my life. That day I started fighting again.

9/9/05 - Went to the hospital as I had a bad scab on my left elbow. Dr. took a culture of the infection, it was a BAD staff infection. The infection is in my system, and is making me sick.

If you have ever had a staff infection, it is one of the most painful in the healing process. The infection had eaten about a 1" diameter around the opening. I had to insert a swab deep into the infection to clean it out, then impact (Shove) gauze into the infection. VERY PAINFUL!

9/20/05 - I have had blood in my stools for some time now. I did not think much of it, until today. I stood up and almost passed out. I called Kim, she took me to the hospital, they took a sample and could not believe how anemic I was. The Drs. told me that my blood count was the lowest they have seen. They rushed me to the Seattle hospital by ambulance.
Once I was there, they put 5 bags of blood into me. I had a colonospy the next day. I was in the hospital for 3 days. I felt pretty good after the 5 bags of new blood..... hmmmm maybe I should do that all the time? :)

I have found with Dermatomyositis that the disease will take it course. There is not much you can do, but to hang. When the Dermatomyositis has finished, you can start to wage war on the disease. This was the lowest point of the disease, from this month, things started to improve. I was not out of the woods yet, but in the next couple of months, I was starting to win, not the disease.

June 2005 - Feeding Tube

I have one of the worse cases of Dermatomyositis that the Drs. have seen. Dermatomyositis can effect your ability to swallow food. From the onset of Dermatomyositis the muscles that allowed me to swallow have been getting worse and worse. I could eat every little (Kim would have to put the meals in to food processors to make baby food), I could barley swallow water without choking, and at night I could not swallow my spit. I had to have a cup by my bed to spit out my spit or I would choke on it (Yes, it was kinda gross).

Something had to be done. My weight was dropping very fast (About 120 lbs right now!) and my strength was nothing. We had spoken to the Drs. about a feeding tube, but, as a typical guy, I did not want one. The Drs. told me that if I did not take the feeding tube, I would die.

I had a GI feeding tube. The Drs. inserted a tube from the outside of my belly, that went into the stomach. There was 12" tube that hung from my belly, I had to tuck the tube in my pants. When I ate, I would take liquid food, pour it into a funnel, into the tube, that went into my stomach. NOT FUN, but it was life or death. This was my only nourishment and liquids that I would take in. I cannot tell you how much I missed eating. You find that eating and meals are enjoyment, and entertainment. This was very discouraging for me.

6/15/2005 - First Rituxan infusion

6/22/2005 - Second Rituxan infusion

6/29/2005 - Third Rituxan infusion

7/6/2005 - Last Rituxan infusion

Rixuxan is taken by IV. It is taken 4 times, in four weeks. The only side effects that I had; I felt like I had the flu. I did feel that Rituxan worked, I felt the effects in about 6 weeks time. The first time was the best reaction, the other ones I felt did not work as well.

6/30/2005 - Feeding tube put it.