I know I know. I need to keep this updated. I have received so many emails from people about updates and information it is terrible I have neglected this so badly.
SO
Here I am. I want to make this more educational too. Not have this be only about me but SJS in general. I will keep updating on my progress but I have been asked so many times for information about SJS I feel like I really should be including current events stuff too. Sound good?
First, a little update about me. I have been asked to post new pictures of my scars. To see how they look after 6 months of being discharged from MGH. I will try to do this. But as I live alone now I need someone to help me take them. But I will do that, I think it is so important for others to know that they do start to fade, and you do start to love them. They are constant reminders of your perseverance to survive. My eyes are still the same they have not changed since the last visit. I am still using steroid ointment at night on them which is wicked annoying and makes me wake up with my eyes glued together (losing more eyelashes). I honestly can not say that this makes a difference. I think it helps with the itchiness of the scarring because that was really annoying. I still can not really wear any makeup because it makes my eyes tear up like crazy. The tear ducts are still scarred shut and my eye doctor said I am not a candidate for the surgery to open them because the constant tearing is what is helping save my corneas. So I am learning now to just get over and on with this. The biggest issue that I am worried about is that my vision being so bad and my eyes watering so much it will really affect my skiing this winter. But honestly, I am about to ski so I think I will just get on with it.
My skin has been hurting a lot recently, the scars feel like they are on fire. I think it might be the weather changing it is freezing here where I live now. So ill keep that updated as well as time moves on.
My finger nails are still a mess, peeling and cracking away but there are two that are finally looking normal! So that is great!
My mouth is still very bothersome, when I drink anything bubbly it is really sensitive and painful. But again, it is ok. I went to the dentist and they were not to worried about how my teeth look at this point, I took amazing care of them in the hospital at the cost of my mouth to keep them clean. But they are very hesitant to do any kind of work on them because of any risk of infection or introducing any new chemicals to my body.
My hair is growing back slowly, I actually cut 7 inches off because I was so sick of it being dead. So that was exciting and now I have a fresh new look to enjoy.
My female problems again, if you want to know more send me a private message. The news was not good though from my last visit. Honestly the SJS seems to have affected this area of my body the worst.
That is all I am thinking of right now. I will edit it if I am missing something.
Also, I want to mention that it is not all doom and gloom. I have been able to start a new job that I love as a sexual violence specialist and that has been so good for me to work with people who are also going through something life changing and terrible. I also continue to have the most amazing family (Dad, Caroline, Alex, Mom, Sam, and everyone else in my family) and friends (especially those not in this country). I am SO lucky to have this support network which is why I am so passionate about creating this for others who may not have the luxury to call their sister and cry about how they are feeling. Or know someone who sat in the hospital next to them as they fought for their life. Or just a friend who does not know how to help. That is where I want people to feel conformable to reach out to me. While I am no expert, I did go through it and have a wealth of family and friends who can also help give advice of their experience. I also have a great network of other survivors of SJS who are just amazing that I could ask to pass information along to people too.
Moving on to other things though.
This is a new article about yet another drug that has been recognized to cause SJS:
http://www.fda.gov/Drugs/DrugSafety/ucm377204.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery
It has been so interesting the emails I have been receiving, the drugs that have caused all of your SJS are totally different. I have not herd of any that are the same. This is both frighting and frustrating at the same time. It really just pisses me off that they are not researching this more A and B that they have NO IDEA WHY WE GET IT. I swear to god sometimes I know more about SJS than my doctors. I go in and teach them about it. How annoying is that? They dont know if it will happen again to me what will cause it what caused it in the medication I took to begin with, how to even test for it and the list goes on and on. How can we as a group make this more of a forefront in research. How do we get scientists and doctors to care about this? I think about this daily and if anyone has any ideas please let me know.
My younger sister who is totally amazing is doing her senior project on SJS to raise awareness. I told this to my new doctor who said she wants to go to learn more about it. I think that things like this need to happen to not only get more doctors educated but also get the community educated. Yes it is rare, but if you can help one person be spared the pain and misery I had to endure it is worth it.
I also am wondering how do we get more of us together as a support system. I have this amazing friend from England who has been above and beyond supportive to me and I hope I have been that for others who have been emailing me back and forth. But how can we be more active and supportive and reach more who could really use someone to talk and relate to. I guess how do I get my blog to become more mainstream and educational? Any ideas?
I just want people to know they are not alone, and honestly if I am making one person feel better from reading my blog well then that will make it worth it to me. No one should have to go through what my family and friends and I did. No one should feel alone when struggling with SJS and the horrific aftermath of it and the effect it has on your life moving forward.
NO ONE.
So here I am. Just one person, but I hope that somehow I can help others who can help others and then SJS will be better known. Maybe this is to idealistic but I know from the amount of emails I get weekly that there is a need for this. There is a need for support. And I will do whatever I can to be that shoulder to lean on.
Thank you for all your continued support and your emails. Please NEVER think twice about emailing me with a question. I am here to do whatever I can to help even if it is just reading my day to day experience in the hospital. Stay strong, stay positive, and let me know if there is anything I can do to help.
