“I beat the odds.
What’s your superpower?”
For those who may not know me. I am an advocate for Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis, a listener, supporter, and a survivor. I am Jeri-Ann, now 31 years old, and this is my Fight story, of what many patients may deal with before, during and after something so tragic…
In August 2011, I was 22 years old working 3 jobs and going to school. But for that entire year and beyond, I was in and out of the hospital with a few mental health conditions that came up after traumatic events that happened throughout childhood and again when I was 19. Trying to get my life stabilized, trialing and errors with medication after medication to get something that worked well for me. Nothing seemed to work, I felt like I was going crazy, the highs and the lows, feeling hopeless, and not worthy, I felt like giving up. I don’t remember much from this day. Except a nurse that spoke to me, something he said clicked and made me realize I had a lot to live for, and showed me what I would be missing out on. I couldn’t let the trauma define my life anymore. I wanted to be a survivor, not a victim. They admitted me after a suicide attempt (that of which I never share with anyone). I was then diagnosed with Bipolar disorder, and put on Lamictal/Lamotrigine. The doctor said if any symptoms pop up, do not stop the med, only a rash may show up, but if this happens, don’t stop the med, go directly to the ER. After over a week I was released, but not monitored on this new drug, as the dosages were drastically increasing over time.
I was always a sick kid growing up and after, so I didn’t think there was anything new going on with my body, even though I was experiencing symptom after symptom. I always had dizzy/fainting spells. One day my friend, niece and I took a walk to the park, I got super dizzy, I collapsed and couldn’t move. We had to get picked up, to where I got sick on the car ride a few times. This never happens when I am dizzy, so I knew something was not right. We thought, maybe I had the flu, we made an appointment, that came back negative. Maybe it was the stomach bug, but this lasted several days. They just said I had a viral infection, prescribed me an antibiotic and sent me on my way. My symptoms were just getting worse over time, with good and bad days here and there. Every other day for 28 days I was in and out of the doctors and the hospitals being misdiagnosed when finally I just gave up and hoped this would pass. When one day we had a small party at my brothers, I started randomly slurring my speech, everything tasted disgusting, like I was losing my taste buds. I was talking, but it felt like nothing was coming out. I tried to tell my friends that this is not funny, I am not kidding, I am slurring my speech. My sister could tell, and we knew something was not right, this has never happened to me, and I was not drinking, so this is unusual. We waited until the next day, then it happened again. I told my friends to pull over to the hospital we were passing, they knew something was wrong when I am actually insisting on going to the ER. We waited hours for them to run any tests, urine samples, and we overheard them saying “We need to detox her (referring to me) before we send her home.” We snapped and said I could be having a stroke and you’re not doing anything. I have never been treated so horribly in my life. All it took was a urine sample to rule out drugs or alcohol. They did a CT scan to rule out stroke or any brain issues after fighting with the staff. Come to find out, they looked at my mental history and thought this was all in my head. We left and stated if anything happens to me it’s on them.
Jeri-Ann Peabody
The very next day, my eyes and chest were on fire, my throat felt like it was closing up. I didn’t even notice that my tongue was swollen (which would explain the slurring of my speech), and that my chest was full of hives until my mom came in and checked on me. She immediately went online, looked up the new drug I was on, Stevens Johnson Syndrome was the first thing that popped up. All it took was for these hospitals and doctors to look it up for them to know I was not totally delusional. I didn’t have the hives until last, which is why this beast is so easy to miss and so difficult to diagnose. Even If you get a rash, SJS/TEN is often very hard to diagnose, because many doctors are taught that SJS is so rare they may never have a patient with it. My mom called 911, I was rushed to my local emergency room, we didn’t know what SJS was, or what it entailed until I was diagnosed. I was given morphine while I was there, so I do not remember much. The doctor spoke with my mom outside where she was told that SJS starts on the inside, so my insides started burning so severely that all my internal organs can shut down and soon fail if they didn’t get me the proper medical attention. Which would mean I needed to be rush med-flighted to our city hospital ICU burn unit, before this got worse.
I was flown into Boston, biopsies were taken to rule anything else out. Within a matter of hours the burns were escalating, taking over my entire body. Before we knew it I was in a coma, sedated, feeding/breathing tubes inserted, oxygen and tracheotomy were a must to survive, I was basically on life support, given only a 5% chance of survival. Everyday my mom & stepdad had meetings with groups of specialists working on me, they stayed with me, prayed over me. I was going downhill real fast. They said if I didn’t turn around within a week there was no chance of making a recovery. The doctors told my parents to call in all loved ones to say their final goodbyes as they didn’t think I would make it through the night. They were surprised how quickly the burns were spreading. On October 16, 2011 only 2 days after admittance I was diagnosed with TEN, the most severe form. I lost over 90% of my skin. The problem with burning from the inside out is they can’t see what is going on so much inside, that it could’ve been so badly affected, even kill someone, and cause many problems later on. I couldn’t leave ICU until my prognosis was stable, and until I was awake & alert. I was spiking 109° fevers, everyday I was getting worse. After 6 days eye specialists came in and performed some eye surgeries, one including amniotic membrane grafts, that even one day sooner could’ve saved my eyes. All they could do was let this illness run its course, and keep me on morphine for pain and steroids to stop the spread. After a week the burns seemed to slow down, and stopped spreading. Slowly I was getting better. I had to learn how to walk, talk, and write all over again. In order to get off the feeding tube I had to pass a swallow test, which seemed like forever. Surgery after surgery, test after test, losing almost all my skin, and lost all my nails, 3 weeks in ICU, a month in the hospital I was released to go home.
I was flown into Boston, biopsies were taken to rule anything else out. Within a matter of hours the burns were escalating, taking over my entire body. Before we knew it I was in a coma, sedated, feeding/breathing tubes inserted, oxygen and tracheotomy were a must to survive, I was basically on life support, given only a 5% chance of survival. Everyday my mom & stepdad had meetings with groups of specialists working on me, they stayed with me, prayed over me. I was going downhill real fast. They said if I didn’t turn around within a week there was no chance of making a recovery. The doctors told my parents to call in all loved ones to say their final goodbyes as they didn’t think I would make it through the night. They were surprised how quickly the burns were spreading. On October 16, 2011 only 2 days after admittance I was diagnosed with TEN, the most severe form. I lost over 90% of my skin. The problem with burning from the inside out is they can’t see what is going on so much inside, that it could’ve been so badly affected, even kill someone, and cause many problems later on. I couldn’t leave ICU until my prognosis was stable, and until I was awake & alert. I was spiking 109° fevers, everyday I was getting worse. After 6 days eye specialists came in and performed some eye surgeries, one including amniotic membrane grafts, that even one day sooner could’ve saved my eyes. All they could do was let this illness run its course, and keep me on morphine for pain and steroids to stop the spread. After a week the burns seemed to slow down, and stopped spreading. Slowly I was getting better. I had to learn how to walk, talk, and write all over again. In order to get off the feeding tube I had to pass a swallow test, which seemed like forever. Surgery after surgery, test after test, losing almost all my skin, and lost all my nails, 3 weeks in ICU, a month in the hospital I was released to go home.
Once home I had to go through constant skin dressing changes, trachea bandage change, and constant blood control. About a week home and I went downhill again. I fell in the shower, boils were forming all over again, and I was spiking another high fever. I was rushed to Boston again, diagnosed with Pseudomonas, a bacterial infection caused from the long hospital stay. I was there for another 2 weeks. Still blind and couldn’t open my eyes, which was the worse of it. Finally sent home and on the mend. But had to take bleach and hibiclens baths for 6 months until the infection was completely gone.
Once home for good without anymore hospital stays we could work on physical therapy and getting back to myself again. I was told I’d never drive, graduate, or work again, I was determined to prove them wrong. I couldn’t open my eyes, I was legally blind. My cornea specialist referred me to get fitted for PROSE devices. These devices are gas permeable, prosthetic contact lenses to protect the cornea from further damage. My life instantly changed once I was fitted for these devices. I could open my eyes again, the burning/sand paper sensation was gone & there was instant relief once these devices are inserted in my eyes. I finally regained a majority of my vision back. My eyes will never be 100% again, but because of these lifesavers I can actually live. After all the surgeries and procedures that seem never ending my eyes have been stable. SJS does a number on our mucous membranes, especially the eyes. Since SJS/TEN I have had to deal with more than any person should ever have to go through, before, during and even now. I have over 20 specialists I see, for my eyes, skin, arthritis, fibromyalgia, sjogrens, severe dental issues, IVIG infusions, immune deficiency, asthma, PTSD, anxiety, depression, and many auto immune diseases, etc. Life has definitely given me my fair share of battles, it’s been one heck of a rollercoaster ride, but I am stronger because of everything I have gone through. I may never be the same again, but after 4 years due to IVIG & the technology today I have been able to go back to work.
I am learning to love and live with my new self one day at a time. Each day i am alive is a new day to be thankful I can open my eyes, see my family & friends & just be here celebrating life with each and every one of them.
