As the 5 month anniversary of being hospitalized for SJS is upon me, and my 25th birthday I can not help but reflect on the past months. Never before in my life has so much changed. My body, my home, my job, nearly everything but my family, friends, and dog. As I often feel so much anger towards what happened to me and constantly wonder why me, I am trying very hard to move out of this anger stage to the finally being able to move on. But before I do I really need to thank everyone in my life who helped me get to this point. My mom and sister who single handed (along with the nurses) saved my life. I was NEVER alone, I always had either my mom, sister, or my dad there. My friends who were always visiting me, and my friends who couldn't sending me the most encouraging messages. I would never be where I am today without all of this continued support. I am started a new job that I am so excited about, I moved back to my hometown which is something I have wanted to do for a while, and I have moved out on my own (kinda). I am so lucky to be taking these next steps and celebrating my birthday tomorrow. I would NEVER have made it to this without this support system. I know I wouldn't. Thank you to each and every one of you who called me, emailed me, donated to my website, wrote me letters, sent me flowers, visited me, skyped with me, and just loved me unconditionally while I was the biggest pain when I got out of the hospital (Mom, Dad, Caroline, and Tommy). I love you all so much.
I move on with a new identity which I have learned to embrace. I was talking to another survivor last week about how so many people stare at my scars. I asked one woman if she would like to know what happened to me since she was staring. I am not scared to talk about what happened to me, in fact it is the opposite. I have found that raising awareness is the only thing that makes me feel better about it. So like I always say please never hesitate to contact me, I love talking to anyone about SJS.
SJS can be a death sentence, or TENS which is what I had. But there are also many survivors out there. My younger brother told me to include this in my blog because when he was originally researching SJS he was horrified when he could not find any stories about survivors. So we are out there!
Updates: My fingernails are back to falling off and splitting again, along with my hair. Skin is unchanged still scarred and dark. My eyes are being carefully monitored by my amazing eye doctor in Boston as the scar is growing and more caratin is forming on my lids. Eyes are still super sensitive to lights and I even have to wear my sunglasses inside sometimes now. My mouth is still healing, drinking anything with bubbles in it kills my mouth and even tooth paste and gum the mint burns it. My lips have recently reacted to something, a new allergy but we are not sure what to yet. They have swollen up and blistered on the inside. This was extremely alarming to me as it was a stage in the original SJS flare but it looks like it stayed isolated in my mouth. As for the other areas, well they are healing slowly too. I just started PT so that should help.
I also wanted to start including some news that is about SJS in these posts. Whenever I see anything about SJS I post it on my facebook but I also thought it would be nice to include it on here.
http://www.cbsnews.com/8301-204_162-57596731/fda-wants-warnings-on-acetaminophen-over-rare-risk-for-serious-skin-reactions/
http://www.cbc.ca/news/health/story/2013/09/06/sutent-skin-reaction.html
http://www.clarionledger.com/article/20130706/NEWS01/307060018/Miss-Mississippi-contestant-beats-death-s-call
and the most infuriating to me:
http://www.lawyersandsettlements.com/articles/sjs/stevens-johnson-syndrome-sjs-79-18869.html#.UitwGY1OS8A
(a note about this we should all be enraged about this decision. Our government refuses to hold drug companies accountable for their drugs. As someone who had SJS from a generic drug I am just appalled. This is NOT ok. When our insurance will normally only cover generic drugs what are we to do?)
I think it is wonderful how many people I have got emails from recently. Survivors and friends and family looking for information. I LOVE this. Please always feel free to email me with questions or anything at all. It is always such an amazing feeling to know you are not alone. I have appreciated so much the emails I have got from survivors 2,3,5 years out of having SJS. Your emails mean so much to me and the support is just fantastic. I have not felt alone in a long time, because I have so many people to turn to if I need support. So thank you so much for that.
