I am not much of a writer, however I cannot decline a chance to share my story when it gives me a chance to raise awareness of Toxic Epidermal Necrolysis Syndrome (TENS) and Stevens Johnson Syndrome (SJS).
Four years ago, just before Thanksgiving, I decided to pay a visit to the doctor with complaints of joint pain, nausea, and a slight fever. The doctor suspected Lyme disease after my father told them he had found a dead tick in my bed. I was given Doxycycline after a few blood tests, which would take several more days to confirm the diagnosis Even after taking just the first pill, I felt worse with weakness, aching, high fever, headache, and nausea. I took one more pill on Thanksgiving and we noticed the beginning of a dark red, pinpoint rash on my belly. Soon after, my eyes started to burn, my heart rate spiked and my fever was rocketing up. My cousin Amy, a nurse, told my family to take me off the medication because it might be an allergic reaction.
The next day, the rash covered most of my body, I couldn’t open my eyes because they hurt so badly, my whole body was swollen up like a balloon, and my fever and heart rate were through the roof. I was taken to the clinic, but they didn’t know what was wrong, gave me benadryl and sent me home. A friend of ours, who was a doctor told my dad to bring me to the ER right away. My dad packed up my things and rushed me off. This is when things get a little blurry for me. Doctors were flying in & out of my room drawing blood, trying to keep me comfortable & get fluids in me, asking millions question. Early the next morning the doctor told my family that I had Stevens Johnson Syndrome, a rare drug reaction & transported me to a children’s hospital in St.Paul.
My time at St. Paul was short but will forever haunt me because it was there my eyes blistered. That first night when my eyes began to blister was the worst pain I have ever experienced. I have never felt like I was closer to hell or screamed so loud in my life. It felt like my eyes were on fire while being thrown in a blender. The pain was overwhelmingly extreme and I will never have the right word for it. It wasn’t just pain, the word pain is too simple & covers too broad of a spectrum. I believe there should be a new word made for this extreme level of pain. A word that describes “the worst amount of pain a human body can endure”.
After the night at St. Paul, I was transferred to Regions Burn Center where I was put into a coma and on a ventilator. As any burn survivor will tell you, the horrible hallucinations you experience during an induced coma are never forgotten. My hallucinations were horrific and included being tortured, being submerged into a tub of lava, being thrown into fire that burned me from the inside out and being attacked by venomous spiders. I have decided that these hallucinations are the human body’s way of trying to explain or make sense of the pain you are going through. TENS is the worst pain in the world & it consumes you. It’s all that you can think about. No matter how many pain meds they pumped into me the pain never eased, even when I was knocked out, I felt everything.
When I eventually I woke up, somewhere in my conscious I knew I had lost my hair. So while everyone else was asking the major questions of “can you see?” & “how is the pain?”, all I wanted was to see my hair. The doctors were concerned I might have gone blind due to the eye blisters, but in a miracle above all miracles, although my vision was awful, I could still see, for which I am so very grateful to this day. At the time though, when I finally got to see my bald head, I turned into myself and let myself stop feeling because what I saw in the mirror was not me. What I saw looking back was a monster.
My healing was slow and I couldn’t eat or swallow water. I survived during this time with the help of IV’s, a feeding tube & ice chips. Since I was also diabetic, the doctors told me that I wouldn’t be able to leave the hospital until I could eat or drink. Due to the severe damage from the blistering and burns from the drug reaction, they expected it could be months before I could go home. This crushed me, and put me further into a pit of despair. All I wanted to do was be home in time for Christmas & be with my loving family and spend our Christmas together at home, not in a hospital. I repeatedly told my parents that I was coming home for Christmas and that when I did, it would snow so that we would have a white Christmas.My Christmas Miracle
On December 23, 2012, my miracle wishes came true. The doctors and nurses had gotten together multiple times to try to hash out a way to let me be home for Christmas. Eventually they were able to find home caregivers that were willing to come to Wisconsin to take care of a diabetic, 12 year old TENS survivor like me during the holidays. They had many logistical things to figure out including how to get me to swallow & where they could get me a miniature food pump and food mixture to go home with. On December 23rd, the doctor came in and told me I was going home for Christmas. He came up and hugged me as I cried on his shoulder.
That same day I didn’t just get one miracle though, God gave me two. There had been no snow, which is rare for Wisconsin in December, yet as we were driving home, I watched out the window as the first snowflake of December started to fall. Snowflake by snowflake my second miracle bloomed and by Christmas Eve, the ground was covered in a layer of my bright white, sparkling miracle.
My family and I had the best Christmas ever that year. I didn’t care how much I hurt, or that I couldn’t open my eyes, or that I couldn’t eat. I was home with my family and that’s all that mattered.What I would like you to know about TENS (Toxic Epidermal Necrolysis Syndrome) and SJS (Steven Johnson Syndrome)
- TENS and SJS are the same disease
- Often triggered by an allergic reaction to medication causing a severe skin reaction
- Causing the body to attack itself on the inside
- Covering the mucosal surfaces in blisters including the eyes, ears, throat, mouth, lungs, airways and other areas
- extremely rare
- covers more than 40% of the body
- more severe than SJS in the fact that it affects more of the body
- Covers up to 40% of the body
The doctors told me I had the severest of TENS. 100% of my skin was covered in peeling blisters.Things I have learned on my journey through TENS:
- Life is fragile
- We aren’t in control & anything can happen in a blink of an eye
- Live life to the fullest because it can end at any minute
- Have fun in life, but take time to help others
- Life isn’t just about you & we are each here to help others, to help the world & to share God through our stories
- Help heal other’s hearts by showing them a brighter path, and to lead them out of their darkness
- To become the brightest light you can be, you might have to go through the darkest places
- Always remember that even when life isn’t easy, it is still beautiful & there are beautiful things everywhere you look
- Being blind for so long taught me this. My world was nothing but darkness, in the literal and figurative form. But I got a chance to see a new beauty, not a physical one. The beauty of a person’s spirit. The beauty of how God is in EVERYTHING
- Physical things, while beautiful, paled to the beauty I felt, in the presence of the people that surrounded me
I want to take this moment to thank everyone that was there with me through it all. I may not have shown it in the past while you all were physically with me, but your being there for me meant the world to me. It got me through & I thank you for supporting me on my journey. You all are the beauty I am talking about. I could fill a million pages with the thankfulness I feel in my heart for each of you.Final Thoughts:
It is true that I went through a dark time, but through this darkness God was able to bring me the brightest light. One I am lucky to be experiencing.
Hannah’s Story From a Mother’s Perspective
Kathy (Hannah’s Mom) shares a parent’s journey through TENS The hardest thing I have ever done is watch my child, Hannah, on the brink of death while in severe pain that medicine could not touch. My prayers as I sat by her side were never ending, including asking God: To spare her life as life threatening infections set in; To spare her eyesight as her eyes blistered and she screamed in pain; To give us the strength to run the marathon of surviving TENS, which at times seemed like a never ending race.
One of the struggles I have had since the recovery of the acute phase of TENS is dealing with the many complications. It has been difficult finding doctors who know anything about SJS/TENS and its complications. There have been multiple doctor visits and tests that have led to the frustration of no answers because Hannah’s symptoms don’t fall into a predictable diagnosis. There are things she will deal with daily the rest of her life, including: that her eyes cause her pain every minute of every day.
Hannah has endured more pain than anybody should in a lifetime, much less in four of her short 16 years. I am so proud of how she has faced & overcome these many physical, emotional, and spiritual struggles. She is a hero to me in getting up every day, facing her trials and pain with determination, and in her wanting to use these trials in her life, due this horrible disease, to help others.Important things I would like you to know about TENS:
- Take time to educate yourself on SJS/TENS – Educate before you medicate. Be an advocate for yourself. Question the doctor on why he/she is prescribing it and the side effects. The main cause of death with TENS is infection because of blistering and infection kills 25-30% of TENS patients.
- Complications and chronic conditions that can come from TENS include: asthma, chronic cough, chronic fatigue, chronic pain, cold sensitivity, cornea ulcerations and abrasions, depression, dry eye syndrome, fluctuating vision, hearing loss, heat sensitivity, joint pain, clogged tear ducts, and inability to produce moisture in her eyes, mouth pain, sensitivity to certain foods, excessive tooth decay due to dry mouth, loss of nail beds, sensitivity to light, post- traumatic stress, stenosis, and difficulty swallowing some foods.
- Do not be afraid to approach somebody with chronic illness. Yes, they have a story and it has shaped who they are, but it is not who they are. They dream and struggle, laugh and cry, and have hobbies and interests just like everybody else. They are more than their illness.
- Through this marathon of a journey I have found blessing, strength and comfort from others through kind words, deeds, prayer, gifts, friendships, and mostly my Lord and savior Jesus.