the journey of a butterfly

khaliah's journey with sjs/ten


The Butterfly Blog

Welcome to my blog!  


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


By Monique Shaw, Aug 25 2014 09:26PM

Sooooooo...I am happy to announce that all my corrective surgeries are FINALLY behind me! I was very nervous to go back under the knife but PRAISE THE LORD I am DONE! Sometimes, I am truly amazed at what my body has been through and what my body is capable of doing! I have watched myself heal these last couple months and it is simply amazing. To see wounds the pigment in my skin sloooooooowly coming hair's crazy! And every day, I find something else that has gotten a little better!

There's still some things I am patiently (sarcasm) waiting on! My eyes still give me so much trouble! However, I am prepared for that to be something I have to deal with moving forward. It's hard because I am still concerned about how this will affect my ability to take photographs like I used to, but so far I've somehow figured out a way to make it work!

Almost got this walking thing completely down! It may not look like I have a problem to the average person, but my PTs LOVE to creep on me and correct every wrong step that I take! Love them. I'm not far from perfect though...just a little bit more practice and I'll be ready to fly!

Recently, I've noticed my joints are really achy! Like to the point that I feel like a granny sometimes! It amazes me that no part of my body went untouched by SJS and sometimes I wonder, "what's next!!!!!?" As I said earlier, all my corrective procedures are done and behind me. But my latest procedure brought to light an issue I knew would come sooner or later.

I had oral surgery to detach where my tongue had fused to my jaw and extract a tooth. So, my surgeon prescribed an antibiotic as a preventative measure and of course gave me some pain meds. I didn't really know how I was going to handle taking medication going forward since obviously medication is how I got here in the first place. Needless to say, I am OVERLY cautious and looked up the medicine to see if it was associated with SJS and to my surprise, it was! Why was I surprised!? Because it shocks me that healthcare providers still try to give me drugs that are associated with SJS. Like of ALL PATIENTS, I am NOT the one they should just flippantly give SJS poison to. And I realize that any medication can cause it, but there are some that are safe-er and there are some that are KNOWN for causing it!

So of course I call the surgeon and he tells me "I prescribed that medication to you because it is the best form of preventative care. The chances of it causing SJS is unlikely, but the choice is yours."

It took everything in me not to flip ALL the way OUT! The words "rare" and "unlikely" don't mean ANYTHING to a person who literally lost their skin because of a pill! MY SKIN! And not just my skin but EVERYTHING in my body was ruined! It TERRIFIES me to think about having another SJS episode because I know I will not survive if it happened again. I literally feel like I'm holding a loaded gun when I touch medication. And taking it feels like playing Russian roulette. I opted to take my chances at getting an infection because I don't care what anyone says, NOTHING is worse than being burned alive and living to tell about it.

It still haunts me to think about everything they did to me while I was in the hospital. I can still hear the IV machines beeping and I can still taste that disgusting crap they put in my feeding tube that made me PUKE every single time. I never want to end up in the burn unit EVER again. There are still things I avoid to this day because it reminds me of that time. And no amount of discomfort is worth getting SJS again. NONE.

By Monique Shaw, Aug 22 2014 04:05AM

I've always been somewhat of an "independent" and "self-willed" person. When I was a child, I learned to walk when I was 10 months old...probably because I was tired of waiting on everyone else to take me where I wanted to go and I wanted to get every where and any myself! I'm not entirely sure what my first words were but they were probably something along he lines of, "let me do it!" I think I developed a need to be in control of everything that affected me at a very early age. This hasn't always been a bad has kept me out of a lot of trouble at times. However, this somewhat set me up for failure when it came to trusting God and "letting" Him control where my life goes. (If you know Him, you will know why I emphasized the letting!

In the 5 months that I've been recovering since SJS, my life has been a roller coaster ride of amazing, heart melting, forever memorable UPS...and some earth shattering, pain stricken, heart wrenching DOWNS!! There have been SEVERAL days that I have found myself lying in bed until 8PM...literally not doing anything but worrying and....well worrying. It was an all consuming fire that I felt like I was trapped in. Everything I tried to do, never seemed to make it any better...except one thing.

In the last few months, I have spent MANY nights at one of my DEAR friends kitchen table...talking...praying...sometimes wallowing in all that has come with having SJS. Thankfully, my friend loves Jesus and does an AMAZING job of pointing me back to Him whenever I start spinning my wheels out of control and get lost in my overthinking! (SN: problem is I THINK I'm in control...but really I just overthink every possible scenario so much that I find myself unable to come to a conclusion about anything because I start thinking about the WORST case scenario. It's a problem...I know.) back to my lately, my friend and I have talked a LOT about what it means to TRULY trust and rely on God. This may sound simple and easy to some people. But if I'm being honest, which I always am, this is one of THE most difficult things for me! And it doesn't make ANY sense to me why I struggle with this. Maybe because I have a lot of trust issues in my relationships that I can see, touch, and put my hand on. I think it's natural for us to associate our relationship with God that which is comparable to one with another human being. But I figured out that it's NOT! God is the only "person" in my life that knows EVERYTHING about me and yet He loves me more than I can fathom. He knows every stupid, selfish, thoughtless thing I have ever done and yet He still considers me to be precious ROYALTY! The other night, I found myself praying and asking God to show me why I can trust Him with my whole heart. And strangely I felt Him saying, "why do you have a hard time trusting?" And my answer was something along the lines of, "UHM MAY-BE because people will SAY you can trust them and then when you let them in and show them the REAL you, they break their promises they made when it was easy...hurt you...and eventually abandon you!" And then I found this,

"Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." Deuteronomy 31:8

And then it hit me.

Ok...maybe I've heard this somewhere before but I have to make things seem like my own idea in order for them to have a lasting impact! LOL

But dawned on me that already in tomorrow! Me and everyone else has to go to sleep and wait for tomorrow, but HE is already there. HE already knows what is going to happen! The story is already written and HE is the writer AND the director! KHALIAH is just the actor!! So HELLO!!!!!?!!? Shouldn't I trust the One who already knows how the series is going to end!!??!!? DUUUUUHHHHHH!!!

OMG it was epiphany. All of a sudden, EVERYTHING was starting to make sense. Ii should trust God simply because, God is the ONE area of my life that has NEVER changed, NEVER led to disappointment and He has ALWAYS come to my rescue!

And can I just say that power of prayer is REAL! I have been praying that He would turn my days give me some time on the mountain top! And He has done just that! Another thing I was thinking about on my drive home tonight...that old saying "give a man a fish and you feed him for a day; teach a man to fish and you feed him for a lifetime" I have heard this a thousand times throughout my life but tonight I thought about it a little differently. If God just did whatever I wanted Him to do, gave me whatever I wanted, when I wanted it... I would become a spoiled-rotten bratty little princess, which we all KNOW I am not. And yes, there are times that He blesses me with exactly what I asked for, sometimes even with what I didn't ask for...but other times He chooses to TEACH me! He says, "Wait baby girl, I got something I want you to learn first!" And His lessons are labeled: love, peace, joy, mercy, grace, forgiveness and (my FAVORITE) patience!

I don't always understand His tactics...and yes sometimes I love up to my inner rebel child and I pout...but He has this amazing way of reeling me back in and showing me exactly why He did what He did, the WAY He did it.

Tonight I go to bed with a happy heart that is overflowing with joy. HOWEVER, I also know that know Satan will try his HARDEST to knock me down. But I am locked and loaded *click click* and ready for battle! As long as I keep my sword (or in my case, my GUN...guns are quicker! LOL) sharpened...I will be able to fight! And everything else, HE can handle! Because with trust, comes the end or worrying...and we ALL know I have done enough of THAT!

"Trust in The Lord with all your heart. Lean not on your own understanding. Acknowledge Him in all your ways and He will direct your path. " Proverbs 3:5-6

By Monique Shaw, Aug 4 2014 07:28PM

That old saying "what doesn't kill you makes you stronger" is a LIE.

At least it is for me. What didn't kill me made me angry...






Scared. also made me something else...

So here I am. Once AGAIN. At the all too familiar "why am I alive again?"

The truth is...I absolutely hate where my life is right now. I am 24. I'm single. I live at home with my mother. I'm not working. Meanwhile all my friends are doing exactly what I wish I was doing right now. SURE, I could go on and on about how great it is to have this new found appreciation for life because of what's happened to know that I am a miracle...blah blah FREAKING blah...but that would be me being fake. Not that all those things aren't true, but there is DEFINITELY more to the story. It's easier being the one inspired than it is being the inspiration.

As if being 24 is not complicated enough in it of itself, I am having to deal with losing my independence, which reaaaaaaally rattles my chain. Before this happened, I felt like I was in control of my life. I knew exactly what I wanted to do and how I was going to get there and I didn't need anyone else's help. Maybe this is when someone people would say I am too prideful, but let me explain something.

I have been hurt. A lot. Mostly by other people. And when you've been hurt by a lot of people, you're heart learns to trust no one. And where there is a hurt, there is a wound. And if anyone knows anything about wounds, it's me. I spent months watching my wounds heal and it is a SLOW process. The deeper the wound, the longer it takes to heal. But some wounds, are emotional wounds, and in my opinion, those can sometimes be worse than physical wounds. Physical wounds go through a regeneration stage. And it's going to close and heal. The body won't allow you to walk around with a gaping hole. So in a sense, physical wounds aren't as difficult to heal as emotional wounds. Now I would never say that to a gun shot victim, but I would also not tell someone who is suffering from depression that their pain is somehow less. It's hard having a wound that no one can see. Because you tell yourself that you should "just get over it". As if it were that simple.

But what if we started treating our emotional wounds just like we treat our physical wounds? When you have a physical wound, they tell you to keep pressure off of it, keep it clean and keep it elevated. What if we took the pressure off of our emotional wounds, kept our minds clean and kept our heads elevated? Instead of minimizing VERY REAL wounds...wouldn't it make more sense to prioritize healing them in the best way possible? When I was waiting on my flesh wounds to heal, I wanted to do everything I possibly could that would make the heal just a little faster. So what does this mean for emotional wounds? This means not pretending that the emotional wounds don't exist. It means speaking truth to yourself. This means keeping your emotional health environment clean and healthy. This could mean eliminating people or things that make it harder for you to heal. Or it could mean doing more of the things that promote your healing. For me, it's spending time with people who let me be exactly what I am at the time. Whether it's sobbing or laughing...twerking or ranting. It's also finding time to do the things that truly replenish my soul. Because another thing I have learned is that when life takes a lot out of you, you have to find something that puts life back in you. Much like a bank account. If all you're doing is withdrawing, at some point you are going to be in the negative. And ain't nobody got time for overdraft fees!!!!

So what else did SJS make me? A fighter. I've always believed I was a lover, not a fighter. But SJS has taught me, more than anything that I am a fighter. I fight for what I want. For what I love. And for what I need. And right now, I need to prioritize healing my emotional wounds. Some of them are from SJS. Some of them are deep. Some of them are 20 years old. And how can I expect to move past all the hurt if I never let the wounds fully heal?

And yes, for the record, I am stronger. But that strength came from learning how to pick myself up and fight again AFTER the K.O. The strength didn't come from having SJS. Ironically, SJS made me very, very weak. Both physically and emotionally. But learning how to live with what almost killed you and continuing to fight when all you want to do sometimes is give up, THATS what makes you stronger!

By Monique Shaw, 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.

By Monique Shaw, Jul 14 2014 06:35AM

There’s two groups of people in my world. Those that knew me before SJS and those who have only known me since SJS. And normally I have always felt and acted differently around those who have only known me since. But what I realized is that there are people that love me who have only seen me in this face. I have changed a tremendous amount physically, but I have changed emotionally even more. I feel like an entirely different person some days. But somehow through all my mess, some people just see…me. I don’t understand this. It’s weird because it’s all I have ever wanted…for people to love me for who I truly am…and that’s what happening…but it’s weird. Only because it’s so different from what I am used to. I have always stood on the side of the people who knew me before, because they have seen what I thought was the real me and am watching me transition back to the familiar. As this is what I have thought too…because I knew me before. But the post SJS group is seeing my transformation backwards. I never really thought about this from the perspective of someone who has only known me as what I am today and they are watching me transform into something they have never seen before! This whole experience has humbled me in ways I never thought I would be humble. And just when I thought I had learned the lesson, the unexpected happened.

It’s hard enough to try to get regular people to see past my skin. So naturally, I assumed it would be even harder to get a guy to see past it. So very early on in this journey, I decided to put dating on the back burner…more like put it back in the deep freezer…in the basement. I NEVER expected any guy to want to date me while I am going through this crazy transformation journey because let’s face it…our society says appearance is everything, and if not everything then 97% of it! It VERY rare that relationships start with “hey, that girl has a BANGIN…personality!” But that’s exactly what happened. One minute I’m sitting in the dentist office….trying not to fall apart because I have to get my teeth pulled, and the next minute I am being asked if I would like to go out sometime! And again…it hit me…there are still decent human beings in the world. Ones that are genuinely good people, that are not as superficial like the rest of our society.

It is SUCH a breath of fresh air.

To feel like SJS is not the only thing someone notices about me. To know it’s not the only thing that makes me special. To know it’s not the only reason why people love me. It’s things like this that give me strength to find my second wind while running this crazy race!

By Monique Shaw, Jun 21 2014 05:29AM

So. I am sitting here. At the lake. Trying to find some sanity in this craziness I live in every day. And I am just beside myself at today.

Now last week...was THE worst. And I was PRAYING that He would just send some smiles my way because I was SUFFERING and I was in desperate need of a break.

Now first, let me tell you how to crap hit the fan.

I was getting gas the other evening and my card got declined...which doesn't happen to me...ever...because it USED to happen all too I knew something wasn't right. Long story short, I checked my account on my phone and soon realized that it wasn't a mistake. I had ZERO dollars and last I checked, I had thousands. So OBVIOUSLY something ain't right! I then realized that I was a victim of credit card fraud and I. Was. PISSED. My first words were REALLY GOD...REALLY? Why me...why now when I have already had my heart ripped out and stomped on?

Thankfully, my dear friend Tiffany invited me to go to lake for a few days because I think I would've lost it sitting at home with no money and wallowing in my misery. BLESSING #1.

So I called the bank and of course they were not helpful. They told I had to wait seven days. SEVEN DAYS???? Who the hello kitty can go without money for seven days???? Ok... #firstworldproblems...plenty of people go without money everyday but y'all know what I mean!!! But I decided (actually more like didn't have a choice) to just deal with it when I got back from the lake.

So today, my mom texts me and tells me that she called the bank and by the grace of God, all my money was put back in my account. BLESSING #2.

I was SOOOOO relieved and PRAISING him because I was shocked that it happened that quickly. After that I was happy again. All was right in my world. And I thought that was it. But nooooo. Let me tell you how good my God is.

Since I have been well enough to really hang out with my friends (not just sit on the couch and cry lol) I have been praying for someone who truly understands what I am going through. Not that my friends aren't great....they are amazing! But my hearts desire was to have someone who had experienced what I went through, what I am going through. As much support as I have had through this journey, no one can truly understand how I feel.

I checked my email and saw that I had an email from someone from an SJS support group. I called the guy and talked to him and he informed me that his wife had recently battled SJS and that he knew of another girl around my age, who lived in my area, who got SJS from taking Lamictal...just like me. He gave me her number and we started texting, and I swear it's like I'm talking to myself!!! This girl's story is almost identical to mine. I. Was. Floored. BLESSING #3

And just when I thought things couldn't get any better, my mom texted me and told me that her company sent me a check to pay for these very expensive custom wigs that I have wanted. OOOOOOOMMMMMMGGGGGGGG!!!! BLESSING #4

And THEN I got a message from an old friend form college telling me that she wanted to write a blog post about what an inspiration I have been to her throughout my ordeal. I have never been more humbled I know it sounds crazy but I struggle with feeling like I matter to other people and that I truly make a difference. I was so blessed to read the words of someone who has been changed by my story. I love when I get to see the fruits of my labor. I want nothing more than for my testimony to bless other peoples life. That is the only thing that makes going through hard stuff worth it. And today, I truly felt like an inspiration. BLESSING #5

And then to top it all off, I saw the most beautiful sunset while sitting in my hammock, which anyone who knows me knows how I feel about sunsets. A beautiful sunset can change my entire mood. And it did. I went from happy to elated! BLESSING #6

And that was when I realized that God absolutely keeps His promises. I have been very interested in Gods promises lately. I know that He will always keep His promises but I wasn't exactly sure what His promises were. So I started searching for verses about His promises. And the first one that I found was 2 Corinthians 4:8. And it spoke to me directly! These words express exactly how I have been feeling. Broke by my troubles, confused, hurting...a mess! But He promises that we will be broken but not destroyed. Pressed down but not crushed. This world will try to kill you but He will never abandon you. And despite feeling like my prayers just hit the ceiling, today proved that HE HEARS ME! My prayer last week was just to have a reason to smile, and He gave me MULTIPLE reasons to smile! I just wanted my money back and He did MORE! It amazes me that He thinks enough of me to bless my whole day, my whole week, my whole LIFE!

The second promise I found was 1Cor. 4:7-9 which pretty much sums up my life right now. Since SJS came in a wrecked my life, Ihave felt like I was being tortured in every angle! If it wasn't my appearance, it was my inability to walk...if it's not that, it's the difficulty eating and swallowing. WHAT HASN'T been bullied and tortured by SJS is a better question. God doesn't promise that we won't experience hardship, BUT He does promise that it will not break us! He will never abandon us and we will not be destroyed by this life!

These are the moments I live for. To see God show up and show out when I feel like all hope is lost...UH-mazing. Simply amazing.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. (Ephesians 3:20, 21 NIV)

We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. (2 Corinthians 4:7-9 NLT)

By Monique Shaw, Jun 16 2014 03:49AM

I canNOT wait for this week to be over. I am so looking forward to a fresh start next week because LORD knows this week almost defeated me. Today was hard for lots of reasons. But mainly because it is Father's Day. This day is always a hard day, but for some reason this year it was just extra sucky.

Most of you know my story when it comes to my father but in case you don’t here’s a quick synopsis.

He is a non-existent part of my life and has been for the last 23 years. I spoke to him a couple times a year and I hadn’t seen him in 10 years before I woke up from being sedated. I have waited my whole life for my father to make an effort, validate his love for me...basically just to show up. I have serious “daddy issues” and I have struggled with feelings of inadequacy and abandonment my whole life because of it. The end.

I’m sure you are wondering if he has always been MIA, what’s different about this year? Well. As I mentioned before, I hadn’t laid eyes on my father since I was 14 years old before I got sick. The last conversation we had before I got sick was “I never want to speak to you again and I don’t care what happens to you.” And although he came to the hospital and stayed for a few weeks, he rarely spoke to me. It’s weird and it doesn’t make any sense and I try to convince myself that his presence there was merely another figment of my drug induced imagination.

So today, I woke up sad. Already down because of everything else. I realized I have spent my whole entire life waiting. Waiting for my father to care about me. Waiting to move out and get away from my crazy family. Waiting to feel better about myself. Waiting to graduate. Just constantly waiting. This ordeal has been nothing BUT waiting. In the hospital it was waiting to get my trach out. Waiting to get my feeding tube out. Waiting to go home. Waiting on EVERYTHING. And even out of the hospital, it's been waiting to get stronger. Waiting to walk better. Waiting on my hair to grow back. Waiting on my eyelashes and eyebrows. Waiting on my vision to improve. WAITING, WAITING, WAITING.

Confession: I HATE WAITING. I want things to get better NOW. This has always been a thorn in my side. I never want to wait on God's plan, because His timing is NOT the same as mine. I want to go with my plan because I control when my plan starts. And even though 99% of the time my plan fails, I stil have issues with this waiting thing.

So needless to say, I was spent. DONE. I lost it. I yelled. I cussed. I got really mad. I came home and cried. And now I am letting it all out because I am done with today. I am leaving all of this week’s worry and sadness at the feet of Jesus. There is nothing I can do about it. It is, what it is. I am praying that God will put lots of band-aids over my heart and help me find the blessing. I hate when I get like this because I feel like I am not making Him proud. And that’s really all I want to do. But lately I have found myself feeling oh so human. Reacting instead of waiting. But I am hoping He sends me lots of smiles in the next few days. Because I am aching to smile again. I know I have a lot of reasons to smile, I just wish some of my reasons to frown would go away.

So for now, I will just wait. Wait…and wait…and wait some more.

By Monique Shaw, Jun 14 2014 03:43AM

My feelings are all over the place. One minute I'm smiling, the next minute I'm crying. What's wrong? Well...simply put...I miss myself!

That sounds psycho, but I promise it's not. I just really, really wish I looked like my old self again! I know I will get there one day....but I want that day to be today! I'm still not over the fact that I basically woke up to a new body overnight! I still dream in my old body, I see pictures of my old self everyday....and I feel like I am looking at a different person! It's weird because I am starting to sound like myself again and I am not as sick so I am doing more normal things again, but I am still not me! I am trying SO hard to like this person I see in the mirror, but she is different. She is amazing and she is strong, but she doesn't look like Khaliah.

Who knows when I will start looking more like myself again. But all I know is that I miss her. And I miss how my life was before SJS. I miss my house. I miss my cat. I miss going to work and being with my students. I miss being carefree. And I miss being pretty. I miss that more than anything.

Praying that He will help me find myself again. And that He will show me who I am in Christ.

By Monique Shaw, Jun 12 2014 01:17AM

I was on cloud 93798273986 this past Saturday at my race. And I started this week off in a positive state of mind. But then…Tuesday happened. Most of the time, I try to stay busy and occupy my mind so that I am not tempted to sit around and feel sorry for myself but yesterday, I found myself staring a little too long in the mirror. When I first got home form the hospital, I refused to look in mirrors. Because every time I did, I would sob profusely. I’ve gotten better about it as I have healed over the last few months but yesterday I just found myself staring…with the same look that I get from strangers. The look of confusion, the look of shock, the what the hell happened to you look…I get it now.

As I looked at the person in the mirror, I realized that I STILL don’t recognize who that person is. It sounds like me (kinda) and it sorta, kinda, MAYBE looks like me…but it doesn’t feel like me!

I literally feel like I woke up in another persons body.

I am half the size I have been for half my life (which is GREAT!) which is enough of a transformation for any one….but shortly after my weight loss, I also lost everything that I feel like made me beautiful. And before everyone jumps on me about inner beauty, let’s get real about something….

The world…doesn’t give a damn about inner beauty…at all. The world teaches us that our appearance, is everything. It’s your brand, it’s your logo, it’s your money maker! It’s your first impression, regardless of what you say, regardless of how smart you are, your appearance is the first thing people notice about you.

It breaks my heart when people stare at me. It tears me up when I sense that people are weirded out by my appearance. Yes….I know I shouldn’t care, but I do care. Anyone in my position would care. It’s easy to act like you don’t care…but you never just don’t care! I’m strong a lot of the time. I ignore A LOT. I focus on things that are good, every day. But some days…I’m just a little too human! And Tuesday, I found myself in the Target dressing room, staring at my splotchy skin and my patchy scalp, wondering if I will ever be myself again…wondering if my skin will ever look normal again and if my hair will ever grow back completely. I have PRAYED for contentment and that the Lord will minimize my desire for these things…just in case they aren’t normal again, maybe I won’t be so disappointed if He changes my heart to not prioritize those things so much? I guess that’s how it works…

And then, the dentist happened. I hate the dentist under normal circumstances, but this time was especially unsettling. I was informed of the multiple problems in my mouth as a result of SJS. Once AGAIN, SJS is taking something else away from me! You would think that my skin, my hair, my nails, my job, my house, my sanity, my faith in medicine was enough….OH NO…now my teeth have been affected. And the one pretty thing I have left, is now damaged too.



My whole life, I have heard what a beautiful smile I have. And now I’m just worried that I won’t want to smile if I have missing teeth. It’s the one thing I have left through all I have endured. And YES, I realize that I can wear veneers and fake hair and fake eyelashes and I can draw my eye brows on, and I can wear make up to cover my cheetah print skin…but what about me? The real me? The me that still sees the world through the exact same eyes? That’s part of the reason why I haven’t started wearing fake everything! What message am I sending? By making myself “more attractive for society” what am I telling myself? That I’m not good enough just how I am today….maybe?

I have no clue. I’ve never done this before, and there is not a manual on how to handle all the crap SJS hands you.

I’m drowning….I need peace of mind. I need relief. I need JESUS. I need Him to rescue me from what feels like impending doom. I need Him to heal my broken heart. To help me turn this horrible ordeal into something that glorifies Him. That takes the focus off of me and puts it on HIM. I want so badly to be in His presence and free from this world. I feel like I am in a constant battle between my flesh and my faith. My flesh tells me to give in to depression, and be angry and miserable because I have the right to be. But my faith says, LOOK TO HIM. Trust in His plan for your life and don’t abandon your faith just because none of this makes sense right now. Pray. Trust Him. Find the blessing. And LIVE.

If I choose to stop living, then SJS wins. And we ALL KNOW that is NOT happening!

Not today. Not tomorrow. So it’s time to put on the armor of God and fight. HARD.

By Monique Shaw, May 27 2014 02:04AM, throughout this ordeal, a lot of people have told me how strong I am. I always laugh when they say that because I have felt everything BUT strong during all of this. And TRUST ME, what little strength I did feel was 100% attributed to falling on my face and begging God to give it to me. Maybe I don’t see it because I know what goes through my mind every day…but truth be told,

I am MESSY and BROKEN right now.

I am WEAK and ANXIOUS at times.

I have cried more in the last 3 months than I have in 3 years! When I woke up and they told me what happened, I cried. When I realized all my hair was gone, I cried.. When my friends came to see me, I cried. When I realized I couldn't walk, I cried. When I left the hospital, I cried. EVERY time I look hard enough in the mirror, I cry. Crying has become my thing because…I don’t know what else to do!

There are times that I feel strong and there are times I feel like a wet noodle! But I want to make it very clear that the only reason this ordeal is different and I have held it together and kept moving forward is because of my faith in God. I decided to trust Him with my healing process and trust in His plan for my future. I know that sounds “churchy” but that is truly what differentiates this bad experience from other ones.

Many of my supporters and friends don’t know how all of this started. Last December, I reached a breaking point. I came completely unraveled. I reached the point of desperation. I was ready to end my own life and free myself of all the hurt and pain I’ve experienced. I felt like I was never going to be able to feel in control of my emotions and that I was just a sitting duck, waiting for the next horrible thing to happen. Basically, I was looking for the strength to keep going and when I couldn’t find it, I gave up. This is a classic example of what happens when we try to look for strength to keep going within ourselves and not Jesus. And this is why every other time that something bad has happened to me, I have come unglued. Not having anywhere to place my hope is how I found myself needing drugs to “fix” me.

Now let me tell you what I do know. I don’t fully understand why this had to happen to me and sometimes I think it would’ve been easier for God to take me. Everyday I think about what I would be doing if I had never taken that medicine. But what I do know is that God has used every bad thing that has ever happened to me to strengthen my faith, teach me something and bless someone else’s life.

Sometimes I wonder if that makes it worth it.

Initially, I say HECK NO! I almost died, my life was turned upside down and now I look like a freak!! Nothing good could possibly come from this! And honestly, I was livid in the beginning. I didn’t understand why God would allow me to survive tragedy, only for me to wake up in this mangled, broken body! But then I ask myself the more important question.

How does God want me to use this to glorify His name?

The minute I asked myself that question, I stopped thinking about myself and started thinking about Jesus. We forget that our purpose here on earth is not to be successful, make lots of money, get married, buy a house, (insert everything else we think life is about). Our purpose in this life is to love God and love people. That’s it. Everything else, is secondary.

What does that mean for me in this situation? It means choosing to love and trust God even though I don’t understand His plan sometimes. It means choosing not to be angry with the doctor who prescribed the medication that caused me to get sick. It means choosing to be a light for Christ instead of giving the people in my life a reason to question God’s faithfulness by being faithless. And I am NOT going to sit here and act like this is how I feel everyday. It’s not. Some days I choose to revert back to being a worrisome, anxious, hopeless human who is drowning in sorrow and gasping for air. But then I remember how far He has brought me. I think about all the things that could’ve gone wrong and I’m THANKFUL. I think about all the people I now know because of this and I am JOYFUL. It may not have been how I would’ve written my story but I am also the same person who was convinced I had no purpose, no one loved me and that I didn’t matter. So obviously I am in no position to take control of my life. So I’ll just stay in the backseat and let Jesus take the wheel because I have no idea where I am going and I am too stubborn to stop and ask for directions. ☺