The road of recovery

Recovery is a strange thing. It constantly amazes me how my skin has healed. I look at my body every day and am in awe of what the human body can do. I am covered in scars, but as I keep telling people who email me asking about SJS I am not afraid of them, or disgusted by them. They remind me of what I have done, which is survive this terrible syndrome. They are everywhere though, and I mean everywhere. But the more I heal the more they look less alarming and more tolerable.

I went to see my eye doctor Thursday and my lids are scarred and I have some keratin growing near my scared shut tear ducts. So that is something we will be keeping close tabs on because with that scarring could lead to cornea damage if it is not caught early enough. If it does start to cause an issue I will have to get PROSE lenses in my eyes which will protect them from further damage, but we will use that as a last resort. My eyes are still extremely sensitive to the light, even light inside sometimes, so I am always wearing my sunglasses. But I will see my doctor monthly to make sure my eyes are not harming themselves which is fine, because each time I go I learn more and more about SJS from my eye doctor who is wicked amazing.

In other news, I am trying desperately to lose the weight I gained from the steroids. My older sister made a good point to me today though, that the steroid “fat” is what saved my skin. Which is true, and when I think about it like that it makes it easier to cope with. But I am her maid of honor for her September wedding so I am not pleased with how hard it has been to get the weight off. I was on high doses of steroids for three and a half months, and that means that my body basically inflated. I am honestly more self-conscious about my weight than my scars could ever make me. I have always been active and have had a very athletic body so this is a daily struggle for me. But, now that I have been cleared to start WORKING and being more active I can finally start getting back to my normal weight. (Big event that happened was the getting cleared to actually start working again) I just really understand now what the doctors told me in the hospital though about steroids being a messy way to treat SJS but honestly I would never have expected to look the way I do from them.

My nails are finally growing back! They are very thin and keep splitting and breaking but they are coming back! What is really weird though is that now, two months later, I am losing some of my hair and my toe nails are falling off! I thought that once the damage was done it was done, but apparently it can happen after. My dermatologist said that because steroids inhibit the hair anagen growth phase even though I am off the prednisone I can still experience something called telogen effluvium. This happens because my hair had to cycle though its stages before actually losing it, it has a delayed onset which is what I am experiencing now three months later.  So this is something new that I am dealing with now but minor in comparison to other issues. I still get sores in my mouth, and my tongue is STILL healing. It still hurts when I drink carbonated things or even brush my teeth with mint toothpaste.  And, I have one of the most scarred mouths my dermatologist has seen so that is pretty impressive right! Oh, and lastly, my eye lashes are coming in strong! I had to have a few pulled out when I was at the eye doctor because they were growing in, but for the most part they are coming back, which is great news.

Finally my OBGYN issues.  I am a little hesitant to right about this on here, just because it is such a personal thing. But because it creates huge issues for women who have SJS so in general I will write about it in future posts but just not today.

So like I said the recovery process has not always been smooth. It has its ups and downs, and I get good news and I get some not so good news. I never would have guessed I would ever have to experience something like this. I never would have guessed that I would not be working at Mass Eye and Ear’s ER right now, I never could have imagined the constant support and love I get daily from people reaching out to me from this blog. I am going to continue this blog, because the emails I keep getting with questions for me about SJS and about my experience are amazing to get. I love sharing what I have been through with anyone especially if I can help make someone less scared, lonely, or mad. Because believe me I went through the anger stage. But what is important to remember is that this happened, and I have chosen to do what I can to make a positive from it. I do not have good days all the time, and in fact I have had some pretty terrible days on this road to recovery. But what matters is that you move on, I reply to some emails from my readers, I just pick myself up and keep going. In general I think this experience has seriously changed how I look at life, and though the path I am on now is not the one I would have ever expected it is just a testament to life’s unpredictability. And you know what, I think I am ok with that.

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!!!!

SJS Pictures

NOTE: These images are protected by copyright. This means that you may not take or share them without my permission. Anyone who has had this debilitating condition knows all too well how vulnerable we feel having our story shared. While it is hard to have these graphic images posted online of myself, I would hope that any other SJS survivor or family member would respect my wishes. It is critical for other survivors to know they are not alone, and that they will heal. I refuse to take them down as they have helped so many others. 

Vacation!

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!