A family tradition is going to Moody beach in Maine each year. This year it has been particularly special since I was not sure I would be able to be here a month ago. I have had to make sure to stay covered up from the sun but I have been able to sit on the beach and hang out with my Dad's side of the family. I have been walking daily, not by choice, my dad basically drags me on these walks but I am glad I have been doing them. It is crazy to think how far I have come in a month. Last month I was on crutches still and now today I walked 2 miles with my little sister and Dad. I was feeling pretty proud of myself. On the second day I was here I had my favorite food, fried clams and guess what. My taste buds were not happy. They tasted disgusting, so that was not very fun. I keep getting little surprises like that to remind me that my body has changed from the SJS. I am not sure if this is something that will go away or if it is permanent but I can still eat lobster so at least that is good! I have also been in contact with Jean who started the SJS foundation and I learned a lot from her about her family's experience and other survivors of SJS. She put me down as the contact person for Maine and Mass so I am really excited about that and talking to other people near me about SJS. It is hard to talk about, but telling people my story feels really good. From that I have kinda decided to turn this website into more of a informational website so that anyone who is a survivor can read this and learn from me. I am not sure yet how I am going to do this but I will figure it out.
As far as how I am doing, I had the apt with OBGYN and learned that I will be able to have kids in the future (she thinks). This is HUGE! The scaring is healing and on that I am doing really well. That is all I had for apts this week thank god since I am in Maine, that was a long drive. My eyes are still running constantly, and I am still on the steroid ointment at night. No progress has been made, they are still extremely sensitive to light and are very blurry. I went down on the pain meds Wed so my body is furious with me. I never mentioned it before but I will put it on here now for others to know. I was on morphine in the hospital but because I was in there for so long and in pain for so long my body got used to it and it stopped working. So they put me on methadone, which is a really scary painkiller as I have learned. It has made my short term memory disappear and made my body, not mentally, absolutely addicted to it. That is why when I tried to stop it cold I had such a bad experience and the withdrawals were dangerous. So I was put back on it and am on a "safe" wean now.
My mouth still can not tolerate anything minty or bubbly, but it is healing for sure. Things taste different but my taste buds are growing back, but my tongue is very scarred. My skin is itchy. Very itchy. But that is also healing, I am just covered in scars. The weight is slowly coming off, the steroids really killed my body I had worked so hard on, but I am slowly getting it back. I keep saying it is like I am in someone else's skin, it is the strangest thing when I look in the mirror. My fingernails are almost all off, I only have three left to go! I will hopefully be able to go back to work soon! I am walking everyday to get my stamina up so I can tolerate my job where I was always on my feet in the ER. Fingers crossed that will be sometime in the next month or so!
So that is the update, this will be changing slightly as time goes on to be more educational about SJS and hopefully I will be able to get a support group together of SJS survivors to meet!
If anyone has any ideas email me! christinesjsblog@gmail.com I would love to hear if people have done this. Also, if anyone has any questions at all email me! I would love to answer any that people have!
