Update

I have finally been cleared by dermatology! They only need to see me on as needed follow ups! This is great news for me! All of my fingernails have fallen off and my skin is still full of scars but I do not need to go back unless a problem arises. My fingers now feel so weird now that there are no nails on them, but hey I do not need to continually tape them down anymore so that is good. My mouth is still healing, and I get sores still which is so strange to me but normal according to derm. She also said that my mouth is scarred and that's just the way it will be. My skin also has issues controlling my body temperature. I get very cold or very hot, and my body sweats at the weirdest times. Finally, the skin on my feet is so sensitive! I used to be able to walk around barefoot everywhere, but now the smallest little pebble I step on is painful. There are still lots of other medical issues I am struggling with including my vision and the scarred shut tear ducts, among other things but I will post about those as I get more information from doctors.

I am now finally off the methadone successfully! The weaning off was painful and jeasum crow the withdrawals were nasty but I am finally doing better on that front. I am also off the lyrica which is great news because my memory was affected by that. My memory I would not say is much better but its getting there. I am starting two of my pre recs for nursing school next week so that hopefully will be ok with my lazy brain. I am doing the classes online because since I had to move back in with my parents in Maine while I recover it is hard to commute for doctors appointments and classes. So hopefully they go ok! 

I am still working on a SJS foundation here in Boston, I am hoping by continually posting on here with my recovery I am able to be a resource for other SJS patients, family, and friends. The most frustrating thing for me is that there is a lot of questions for my health. No one can tell me what will happen with my vision or body because each case is different and no much research has been done. But what I can do is raise awareness and educate people about the symptoms of SJS. I wish that the doctors in the first ER I went to knew about SJS because I would have started treatment two days earlier. So doing anything I can to educate is my new goal, well and nursing school.  Keep the comments coming and suggestions! I can use all the help I can get, and thank you all for your great ideas! I am considering doing a fun run or something to raise awareness. In 2009 I biked across the US to raise money for cancer, while I can not do something that huge it would be great to do something to spread the word about SJS and have some fun! 

Thank you everyone for your continued support and love!!!!