livingwitheczemaiscruel:

Hi Everyone, It is a long read, but well worth it. Here is the story of Rachel: 16 year old that almost died from TSW. She went into the burn unit ICU. Dr. Rapaport flew from LA to NJ (5 hour flight) to see her twice during her recovery. She is completely healed today. Have hope friends…

Dear Miss. Palace,

I am Rachel and I am 16 years old. I heard about your website and wanted to share my story.

Ever since I was 3 I have had minor eczema in the creases of my arms, my fingers and behind my knees. I had an allergist and a dermatologist. Doctors would always treat my case with oral or topical steroids. It seemed like that was the only option they gave me.

As the time went on and I got older they gave me higher doses. I remember them telling my mom to sometimes mix the steroids in with Vaseline so it wouldn’t be as harsh. My mom, trusting the doctors would rub the cream on my hands when I would cry that it “hurt” or “itched”. When I turned 10 I had watched my eczema move around my body to bigger spots. For example instead of it just being behind my knees it was both my legs and instead of it just being in the creases of my arms it would be my whole arm and my whole wrist as well. In between my fingers would itch like crazy. So for the itching I would put the topical steroids on it and It would go away. Just disappear like that. But two or three days later Id have it ten times worse. My mom and dad would see as it got worse the more I used it but the doctors said that it was all I could use.
So as good parents who wanted to trust the doctor with what they said they did what they were told would make me better.

I’ll never forget the night it all started. December 9th 2005. I went to take my every day shower before I went to bed. I got in the shower and the second that water hit my body I screamed and turned it off. My mom had come running into the bathroom ad asked what had happened. I had said to her that the burning sensation I had just felt was unreal. It felt like someone sent fire throughout  my body. The thing was that I was at the point in time where the steroids had made it disappear so when my mom looked at my skin there was nothing there. We had moisturized it with the steroids and as the night went on it got worse.

Over the next few years my skin had developed into a living nightmare, after many emergency visits and doctor visits. My skin was oozing through my clothes which made it hard to put them on or take them off. It was getting harder to go to school.

It was my 6th grade year the month of November the year of 2006 that things had started getting much worse. I was up almost every night in pain. Doctors didn’t know what to do anymore. My dad had taken off of work and brought me to my doctor and at this point he didn’t know what to do anymore. So he advised that I should be admitted to the hospital. I was in so much crippling pain from my body being dry and crusted, red and burnt all over he had to carry me to the door of the hospital’s emergency room, where I was put in a wheel chair. I had told them every thing I was feeling. Since I was in so much pain they had hospitalized me. Through out the hospital visit they had given me high doses of morphine and put me on medicines like oxycoden and high doses of prednisone ext. They said that for an 11 year old girl it was shocking how those doses of medicine wouldn’t put me down because it would put a small pony down in a matter of a few minutes however no. That didn’t happen but what did happen was me standing up screaming in the corner of my hospital room at 11 pm saying my skin was burning. All the medicine was doing was making me dizzy and more uncomfortable because it made my head hurt. The doctors didn’t know what to do so they just put me on more higher doses of pain killers and steroids. I was in so much pain I would not even be able to describe the pain. They had done many tests on me and in the end they had come to the conclusion that it was all in my head! Oh G-d no I thought!

So the doctors tried hypnotizing me. The doctors sent me home. But every night was horrendous. I was up every single hour of the night. Eventually I had to stop going to school. It was so painful. After being admitted to the same hospital several different times they had decided to transfer me over to a different hospital in New York. There they said that I was allergic to everything except for rice and oranges. So since my daily diet was this I lost almost all my weight and was only a 60 pds. at 11. My cheeks were blown up and so was my stomach from the prednisone and I had started noticing my hair coming out. After while it had become a living nightmare anytime anyone had ever said the word shower or water that had to do with me cause I knew that it was going to be another horrible experience added on to my day. Living in pain was the worse.

My mom and dad are working parents. They both have jobs that require them to be at work everyday and focused. They had to transport back and forth every night from NY to NJ. My mom and dad would take shifts every other day and on weekends they would both stay with me. Eventually they discharged me and from that hospital. They didn’t know what was wrong with me. Its hard to remember to much after this. After a while, I was getting worse and worse. No one knew what was wrong with me. My whole body was full of burning pain everyday.  They put me on cyclosporine and I got even worse. On top of that thee doctors kept giving me inhalers with steroids and told my prents I would die if I didn’t help my lungs with the inhaelrs.

Nothing would help it , not the oral topical steroids. Not anything would take this pain away. I was sticking to my sheets, I was up all night and I was out of school. I was becoming more and more weak as the days went on. I had lost my appetite. So I lost more and more weight. At 11 I remained a measly 60 pounds. I had lost a lot of my hair because of the medications the doctors had me on. I was getting home schooled but during the sessions I’d get sharp pains through out my body and would have to stop early.  My doctor had sent me to a specialists in NY because at this point they didn’t know what was the matter with me. My parents knew that they had to take me off some of the medicines at this point. Since they weren’t working. The specialists in NY told me she would admit me to the hospital to do a 3 day bathing treatment. She said that after three days I would be better. So my parents once again trusting this “highly professional” dermatologist, brought me to the NY hospital for my scheduled admission. When we got there nothing was going the way it was supposed to. They put me in a small white room that wasn’t clean. Its hard for me to remember this part. I was in so much pain and was so weak that I slept most of the time and because I was on such large pain killers I was out of it. But however unfortunately I do remember some parts. I was in this room with my dad and I remember sitting fully unclothed crouched on the floor saying “I’m in to much pain can someone help me”. No matter what anyone told me I would not lay on the bed it hurt to much to touch anything.

A touch of some ones finger would lead me to scream or cry. My mom or dad could not comfort me when I was in pain. I was living in a  nightmare at 11 years old with no hope and no light at the end of the tunnel. I was fully depressed and didn’t know what to think. I wished every day that I didn’t have to live like that. The next day they tried my first treatment. Little did I know it wasn’t a full on treatment. I walked into an old bathroom with an unclean tub. The nurse forced me to sit in it. I screamed so loud my dad ran to the bathroom and asked if I was ok and the nurse took me out of the bathroom and brought me back to the room. Five months later I was still in the same hospital after thinking it was supposed to be a three day treatment. Even worse than when I was first admitted to the hospital. I had been put on life support 1 time threw out this admission. And I had toxic shock. But one good thing that I had gotten out of these five months of being so sick. Even loosing my ability to walk for several months.

My dad had gotten so desperate for help he had researched on Google “ prednisone withdrawal” a link came up for Dr. Marvin Rapaport’s dermatology. My dad got on his email and emailed doctor Rapaport immediately. A few hours later my dad got a reply. saying that he needs to take me off the medicines a.s.a.p. And that I have the Itchy Red Burning Skin Syndrome. He explained what it was. Basically what happens is every time I felt that horrible burning sensation and every time someone or something touched me or even when I was just sitting down. It was all the poisons (topical/and oral steroids) seeping out threw my veins out of my skin. Its called N/O (noxious oxide). Your veins constrict and release N/O’s which feels like a burning sensation no one could ever imagine. Once those are released the only thing that can help the veins calm down is ice. And LOTS OF IT. So the doctor told me to hang in there and my dad and mom fought day and night with the doctors  for me. And every time a new doctor came in, there answer to the problem would be steroids. And my parents answer was always NO.

After 4 or 5 months in this hospital. I had gotten so weak. I couldn’t eat. I would sleep most of the time. I couldn’t get up and walk. And my skin started turning green and purple cause the doctors were not taking proper care of me in that hospital. I had gotten toxic shock and my immune system shut down along with my adrenal glands. What happened was my body was so used to being given steroids, that the steroids that are supposed to be regularly producing in your body stopped and didn’t want to work anymore.  At this point they just wanted to get rid of me so they discharged me. I remember the night I was discharged I was in so much pain yet I was so happy I could see something other than the same four white walls. I was so little for 11 years old. I was an unhealthy 60 or 70 pds. After a few days back at home I had gotten more and more sick. Ill never forget the day I came closest to my death. A lot of the parts of that day were faded but I know a lot of it because I’ve asked for my parents to tell me some of the sequence in which it happened and who was there and unfortunately a lot all I remember is the agony I was in and how much I wanted to jump out of my body.

I woke up and tried opening my eyes but they were crusted together. I was laying on my back holding my legs to my chest crying. I couldn’t get up not only cause I couldn’t hold myself up but because my skin was stuck to the blankets. My skin was also stuck to the covers over me. I screamed and I remember my dad and mom first coming in. He pulled my desk chair next to my bed than came my mom with an ice cold water bottle. I’ll never forget looking over and seeing my dad and mom  in tears leaning by my bedside. It was at that moment that I  knew I had very little chances of surviving.

My mom called 911. They rushed to my house. I remember blurs of that morning. My mom walking me into the bathroom and taking every step little by little. Every step came with a scream you could hear from 10 miles away. She sat me down and told me it would be ok while my dad had gotten the door downstairs. An officer I’ve known since I was very little, walked into the bathroom with his friend. He had never seen me like this. And he even had to walk out. His eyes were filled with tears. Next came the ambulance along with a women who helped save my life along side Dr. Marvin Rapaport. The EMT came running up my stairs and told my mom and dad to please leave the bathroom. I knew my mom would never leave me and she was right outside the bathroom door. To see if anything at all was needed. My dad had left because Dr. Rapaport had called after my dad had left a desperate message  and he told my father to tell the EMT’s to get me to the closest burn unit a.s.a.p or I might not be able to make it. I have 32 steps in my house.

Bea , the ambulance lady who I now call grandma who made me an honorary amblance volunteer at a ceremony in my town,led me down every single one of of the stairs  tone at a time. Every little step meant so much to me. That this one person could understand FOR ONCE that I had to take my time and I couldn’t go fast. She was patient and that’s all I needed. I don’t remember to much after this. Except the ride in the ambulance with another EMT who was there that day. I remember looking to my left and seeing my mom crying telling my medical updates.
I remember to my right
giving my sips out of my water bottle. As we pulled away from my house I heard the siren go off and I said bye to my house as if I would never see it again. The ambulance lady had told them the name of the Burn Unit . I remember them rushing me into the hospital saying girl you can do this your strong. When I got there a doctor had made a decision that risked his job and got him fired. The hospital wanted nothing to do with the fact that an 11 year old girl might die of a skin condition in there hospital. But knowing he had to save me, he went with his heart and put a life line in the back of my neck. And I was out.

I remember waking up in this big lighted room. It was about 3 weeks prior that I had been flone to this hospital. I had woken up from being on life support in the ICU unit of Hospital of Philadelphia. I was flown to the hospital that night. According to my mom Dr. Rapaport came to Philadelphia to visit me, he traveled all the way form California just to see me, He told all the doctors what to do and when to do it. My mom and dad stayed at the Ronald McDonald house. I don’t remember much out of these visits. Except bad hallucinations and horrible events that were to painful to describe. They were all flares and this hospital layed me in everything ice. I started eating and I got my appetite back. But I was put on life support several different times and so many different pain medications. I have bad memories of that hospital only because it was painful there and I saw things an 11 year old girl would never want to see. But I remember the days that my mom and dad would take me for walks through the Philadelphia campus. My mom showed me FIT and said many times “maybe this is where you will be someday Rachey.” I would walk around with my ripped apart feet and the bandages of Vaseline rapped around my body. But I needed to get out of the hospital so my dad would take me on little adventures and get me starburst from the CVS across the street. Those little walks towards the end were what made my day. I had gone threw a lot of physical therapy so I could start walking comfortably again and just to keep my body on a good schedule. I would do daily ice treatments and as I got flares the nurses would know what to do. Eventually I was discharged but another admission had come again soon after because of an infection I had. I had eventually got discharged from the hospital.

Dr. Rapaport would call my parents every night to see how I was doing. And he also visited me 2 other times after that. Eventually my hair grew back but when I went back to school I would get severally bullied for what I looked like. I was put in home school so I could focus on school and getting better. I was told everyday my health is whats most important. My parents would take shifts at night with me. I would get flares threw out the days and nights. Tons of ice and Motrin and atarax (non steroidal medication for itching) Doc told me it would get better soon and just know that I’m healthy now its just the matter of having the strength to get threw the end of it all.

August 18th 2008 was the year I was taken off all steroids.  Its been 4-5 years that I have been off all steroids. My flares went from being 24’7 to every night to every other day. To the point where I was finally able to go out for a while. To maybe a few hours to and hour to 15 minutes and eventually id get one or two a week. It took me 4-5 years to get to the point I’m at now. I’ve gone without a flare for 18 months now. I have a stubborn patch on my foot. Its red and gets itchy sometimes. But I’m happy to call it eczema. I’ve been back to school for 3 full years since 8th grade. I can wear all kinds of clothes now and eat all kinds of foods. I was bullied for what I look like and kids who can’t grow up, bring up my past but it only makes me stronger cause they only saw the half of it all. Although things they say can hurt over the years I have become so much stronger.  I’ve learned too look back at my story not as something negative but to look at it as a lesson or an “experience.” No one has a story like mine. I’ve learned how to know what’s important in life. And how EVERY SECOND DOES COUNT. Nothing can bother me anymore. Everything has made me stronger. The words I hear now go in one ear and out the other. And the people that matter stay with me for a life time. I recently celebrated my “ dream sweet-16.” I had all my family and close friends there. I had Bea the lady who helped save my life that morning, there with me to celebrate. My sweet was aboard the Spirit of New Jersey Cruises and I loved the city skylines. I appreciated every second of it. I had two big limos and I felt like a star. And thanks to my mom and dad for making my day so special and my life so worth living.

Advice I have for people who are going threw this is that you WILL get threw this. It won’t be easy but in the end it will be worth it. Grit and bear the pain. You’ll get better.

“Theres is a light at the end of the tunnel baby.” -my mommy