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.