Members of Team SJS just minutes before the start of the 2010 Fox Cities Half Marathon!

Tuesday, June 1, 2010

A Little About SJS

This picture was taken about 2 days prior to me getting sick.

So I thought I should tell you a little bit about this Stevens Johnson Syndrome. Well, it's like this - it's and adverse drug reaction (most often times) and it effects the mucous membranes of your body as well as the top layers of your skin. Now I don't have a medical background and do no claim to be anything that I'm not. This is all about my experience! Got it?

It all started for me after I was on a medication for 16 days. I was taking it because I had been fighting depression and my doctor thought this would help. My husband and I were at a local Country Music Festival camping with our friends and having the time of our lives. The short of it is that I started to find a red rash on different parts of my body. I went to see a doctor who thought Benadryl and rest would help. That the reaction would just take time to work it's way through. Within 24 hours, I was admitted to the hospital with blisters over most of my body.

I was eventually moved to a burn unit, where I stayed for approximately three months. The process of SJS is almost like a second degree burn from the inside out. My blisters filled with fluid, they spread over 95% of my body and the skin began to slough off of my body. I was intebated twice, had a feeding tube for nutrients because I could not eat or drink. The lining of my lungs, esophagus and mouth began shedding as well. The doctors prepared my family for the worst, but remained optimistic.

The biggest fears were infection, organ failure and pneumonia. You see, when your body has no way to protect itself from the outside world, it is likely that infection will kill you. As it turned out, all three of these things happened to me! I had sepsis, which they treated me for with antibiotics. Once they had that under control I started to make a change for the better. They were able to keep me awake for longer periods of time and even get me up and around. However, the fluid in my lungs began to cause problems and I developed pneumonia. After that spell, my kidneys began shutting down and I gained 65 lbs. of water weight. The medication they were trying to use to take the weight off wasn't working, so they hooked me up to dialysis to pull the water off a drop at a time.
I know these pictures are pretty graphic, and I'm sorry about that. I don't want to freak my readers out, and I know some of you have seen them. But for those of you who haven't, this is reality!

I went into the hospital in the early morning hours of June 29, 2008 and came home in the late afternoon of September 16, 2008. I had seen my boys only once during that time and I am happy to report that even though I had a trache, and I was still bandaged, I remember seeing them! I was so happy! The pig skin they used to stimulate my skin growth worked and I can say that now have a full body of skin!!!! The weight eventually all came off, and then some, but I was going to live through this!!

When my husband drove us home from Milwaukee, my yard was covered with Welcome Home signs! I had never been so glad to see my sweet little house!

The road to recovery has been a very long one and things have come up since then that I have had to deal with. The worst of which are my eyes. I no longer make tears on my own! I have to use artificial tears and the vision in my left eye is nearly gone. I can see shapes and colors, but that is all. I now wear a prosthetic over that eye to keep the light out of it because it is so sensitive. I wear a sclera lens in my right eye which keeps fluid on the eye all of the time and I am able to see 20/20 out of that one. I am so grateful. I have had two surgeries since coming home and there may be more down the line. But that is not unusual for those of us who have survived this rare disease. A disease that can happen to anyone at anytime. They told me it was a 1 in a million chance, but now it is being reported that it is somewhere between 2-6 out of every million. It's still rare, only about 300 cases in the US every year. But through the Internet, i have met so many!! People who are now my friends that I may never meet in person, but know the struggles I face every day.

I hope this hasn't scared you, just made you aware of it. There is information out there for you if you want to learn more. I hope that you will take the time to look it up, read your own medication bottles and those of the ones you love. Take into consideration the love and joy you have each and every day in the little things. Together, we can spread the word and make some noise so that others may be spared! And don't forget to keep putting one foot in front of the other! That's what I'm going to do! I've got 3 miles to put in yet today!!

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