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.
