the journey of a butterfly

khaliah's journey with sjs/ten


The Butterfly Blog

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I hope you enjoy reading about my journey and learn more information about SJS/TEN.  


Halfway There

By Khaliah, Jul 19 2014 01:02AM

Today is the 18th. 18 has been a trending number in this ordeal. And anyone who knows me knows I am freak about numbers! I started taking the medication on December 18th. Went in the hospital on January 18th. February 18th I was able to see again. Started physical therapy on March 18th. Lost my last fingernail on April 18th. Had my last day of occupational therapy on May 18th. And today is July 18th. Which means I am half way through the first year of my unintentional new life. I canNOT believe it has already been SIX MONTHS since SJS turn my world upside down. My doctors have told me that I “should” recover fully within a year. And when I first heard that I thought this was going to be the longest year of my life. Sometimes it feels like this whole process has taken FOREVER, and then other times… it seems like being in the hospital was just yesterday! There are some things I am simply amazed by…and other things I am still struggling with…but nevertheless, I have come a LONG way in just six months.

My skin is healing and looking better everyday, even though I don’t see it sometimes and I have to go back and look at pictures to believe it.

My hair is FINALLY growing back! Still waiting on one area to grow some hair! My eyelashes are starting to come back and I learned last night that I do, IN FACT have some eyebrows! My alien forehead will be a thing of the past very soon!

My fingernails haven’t emerged yet but I am the proud new owner of THREE toenails! Never thought I would ever be excited about that!

My eyes…well…they still kinda suck, but they are better in certain ways. I don’t have to wear sunglasses EVERYwhere, as much. However my vision in my right eye is still pretty limited. This is causing major problems in my ability to take pictures…which is hard.

Eating/swallowing can still be difficult sometimes but I can pretty much eat whatever I want now…I just have to chew 927678469369 times…

Walking has DEFINITELY improved…physical therapy is going GREAT! Still trying to improve my range of motion in my left leg but I am hopeful that it’s going to get better and soon I will have matching legs again!

My psyche is…well…it’s…progressing? I don’t know…some days I am perfectly fine and then the next day I don’t want to get out of bed. But no one has gotten cut and I'm still I guess thats a good sign...

This journey has been full of learning! I have found myself having to re learn how to do EVERYTHING. First it was learning to stay awake for more than 3 seconds…then it was learning how to eat…learning how to walk…learning how to drive with my altered vision…and here lately its been learning how to trust. I have always had trust issues, but this ordeal brought on a whole new set of trust challenges that I never saw coming!

When I think back to where I was when this first started…why I needed Lamictal in the first place…I can see very clearly why I have trust issues. I trusted my doctor to do what’s best for me. I trusted this medication to work and relieve me of my mental torture. I truly believed that I was going to be ok! Never once did I think something would go wrong. God is on my side…what could POSSIBLY go wrong? And then when this happened, it was like someone took my trust, put it in a box with an atomic bomb, wrapped it up in beautiful wrapping paper and blew it up into a gazillion pieces. I have no idea WHAT to think now. I am still terrified to take ANY medicine. I am still skeptical of everything every doctor tells me. And if I am being honest…my biggest trust issue is with God….

I have a very hard time buying into things I don’t understand. I still don’t understand why this had to happen. But bigger than that, I don’t understand why God didn’t just take me when it would’ve been easy. Before I got sick, I was miserable. I was unhappy and I wanted life to be over. That’s how I found myself in a psych hospital, where I was medicated. I STRUGGLE with feeling like this. It’s not every day anymore, but any day is too many days. I made the decision to take myself there. I made the decision to take the medication. Sometimes I feel like I am the reason this happened.

This week has been hard for me emotionally. I took my best friend’s maternity pictures and it turned out great but it was A LOT harder for me to take pictures than it was before. It’s harder to focus, harder to look into light, harder to do everything involved with taking a photograph. I found myself driving home from her house, frustrated, crying, worrying I would never be able to be the photographer I have dreamed of being because of my eyes. I drove to another friends house because I didn’t want to go home to be alone. I talked to her for several hours and it started all over again. The why couldn’t I have just died-I don’t want to live like this-I can’t take anymore pain. Yesterday, I found myself sitting at another friend’s kitchen table until 5 am crying, complaining, begging, praying, trying to understand, trying not to give up but wanting nothing more than just that. To give up…to be free from all the pain of this world. Not just SJS, but EVERYTHING. But every time I find myself at this place…this place I HATE being at, I HAVE to remember that He could’ve taken me…but He DIDN’T.

I don’t get it. I don’t even like it sometimes, but the inquisitive part of me wants to find out WHY He kept me here. It HAS to be something good. It just HAS TO. In these moments when I feel like the rug is getting ripped from under me again, I have to go back to what I know has gotten me through every other hard time. And trust me when I say, it is NOT easy! I may not be able to trust doctors or medicine or even myself at times, but I have to trust Him. Even when I don’t understand. I have nothing else to live for…nothing else brings me hope. It is so hard to find even one ounce of strength some days…yesterday was definitely one of those days. But thank GOD He gives us new mercies every morning, unconditionally. Thank God for the renewing of our minds.

Jul 19 2014 01:58PM by Granny

You are so much stronger now than before, I see such determination AND wisdom! I am proud of who you are and who you are becoming. You are being refined and renewed! You have always been my beautiful princess but I am excited to see the butterfly emerge from its cocoon! I know this has been an ordeal I would not wish for anyone but you were chosen for a reason, YOU are special in every way, What the enemy did was try to take you out but God has a grander plan for you! I love to life!!!

Jul 20 2014 11:35PM by amarbury

Thank you Granny! I love you!!!!!

Feb 17 2015 05:24PM by jo ann

Hope and pray you are doing good.. You have been and are going through a super difficult time ..Most people have never heard of sjs (steven Johnsons ) . I just saw a post about your ordeal .. My heart goes out to you .Its wonderful that you have a loving supportive family..and God .

As a retired rn I had to deal with one case of sjs .. I will never forget it. A very smart lpn recognized the symptoms. The dr. was called and patient was transferred to a hospital that could treat them .. It was in its beginning stage ..

Once again , here's praying you are much better .. Perhaps you can give an update..

Feb 18 2015 04:25AM by D Working

Hi there...just found your blog from the Sjs mom had sjs in 2006 and reading your entries bring me back to her struggles of the first months...hang in there and I know how scary this can be.I didn't go through it myself but did with my best friend! Contact me if you ever need to vent or justjust talk :) God bless

Mar 23 2015 12:30AM by Callie G

WOW I thought it was bad when all my skin peeled off and half my hair fell out after I had Meninngococcal disease then I had an allergic reaction to one of the medications prescribed for Trigeminal neuralgia, (it could have been the same one you were prescribed) Both the medications for the Neuralgia are also prescribed for Bi-Polar disorder, Tourettes syndrome and epilepsy, the skin on my face dried up and was flaking off pretty bad but nothing like this, I can't imagine how that feels, Khaliah you are brave for sharing your pain with the world, It has been a long road back for you, I really hope you regain some of your eyesight, all of it would be fantastic,

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