I had reason to be ashamed and fearful of the world. I was looked at like a disgusting monster. I know this because I heard it come out of children’s mouths, “is that a monster, mommy?” After a cursory glance from a pharmacist, he whipped his head back in my direction and immediately asked, “What is wrong with your face?” Once, a nurse stood mouth agape following a loud gasp, just at the site of me. I was an ugly, scary, site to be seen. I would’ve rather died than hear how obviously disgusting I looked, like a “MONSTER.”
I’m not sure I can put into words the physical, mental, emotional and spiritual torture that is TSW. My journey with “red skin syndrome” is long, complicated and not without setbacks. And, even though my childhood was spent in a war-ravaged country, where I saw unmentionable atrocities happening right before my young and innocent eyes, I was unprepared for the battle I’ve been forced to fight these last few years. My continued healing, is nothing short of miraculous.
My story begins in 2000, when I was prescribed a cream containing steroids for a small rash in my armpit. The rash would subside briefly before I’d be prescribed more steroid creams for another.
By 2007, I was bald and the doctors were clueless as to the cause. What was apparent was my shame, embarrassment and utter devastation. My parents kindly shelled out nearly $2000 for a wig to help me adjust. I was just a teenager yet I was bald.
There were more questions than answers even then.
During this time, I withdrew from life. I was depressed, anti-social and anxious. One minute, I was a normal teenage girl — fun-loving, outgoing, hopeful — the next, I was confused, withdrawn and heartbroken. I did the only thing I knew to do: I turned to specialists for help, psychologists that rendered “talk therapy,” while psychiatrist prescribed medications.
I talked until I was blue in the face and took the cocktails of benzodiazepines, antidepressants, sleep meds and mood stabilizers I was prescribed, but my questions still outnumbered my answers. And, worse, my mental and physical conditions continued to decline.
Although I felt broken inside and out, I wanted so terribly to be normal; so, in 2011, I picked up and moved 900 miles from home with my boyfriend. We were happy and my life began to resemble the normalcy I longed for. But it was a brief reprieve from my torture. Before long, I was in and out of emergency rooms, with infections, inflammation, and issues. My skin continued to get worse and worse, until my body was completely covered with redness all the time. I was prescribed pain medication and other drugs for the intense burning that accompanied my red skin.
Then one day while I was working, my condition took a terrifying turn for the worst. I recall sitting on the patio outside of work, thinking that I was on my break. A coworker of mine is telling me “the paramedics are on their way.” I look at her, confused. “What do you mean?” She said someone found me in the bathroom, hanging out of the stall unconscious. I had a grand mal seizure while on the toilet, and hit my head twice going down, and blacked out. I had no recollection of this whatsoever. Shortly thereafter, while lying in the hospital bed, I had my second seizure that necessitated IV benzodiazepines to control. I was very confused. Why was this happening? Another issue. Another problem. Another devastation. Still no answers.
That day, I decided that I needed to move back home to be with my family. I could not take care of myself anymore, my broken body was making life dangerous. However, moving back home, did not improve my health. I continued to spiral downward, physically, emotionally and spiritually. Some doctors suspected cancer, others suspected lupus, but nobody had any clue what was going on with my body.
Of course then, I was put on a number of seizure medications as the seizures continued to increase in number. So, at this point in time, I was taking over ten different prescription medications daily. I went through all kinds of testing from blood work, to biopsies, cancer testing, MRIs, EEG, etc. and the answer to my health issues was nowhere to be found.
Doctors continued to give me steroids, both oral and topical, and even injections more frequently. Little did anyone know, that was only making my issues worse all these years.
Finally, my world crashed in around my damaged body in the beginning of 2014. I was admitted into inpatient psych ward 3 times for suicidal ideations. I had given up. I wanted to end my life. I did not see light or hope anymore, only darkness. I simply just wanted to die.
Although I had given up, succumbed to an unknown enemy that reduced me to nothing, my loving family had not. Desperate for answers, my father stumbled on a blog of a woman who was suffering the exact same symptoms as I was. Since I was dangerously unstable at the time, recovering in a hospital after my third suicide scare, he waited to tell me about what he’d found.
I’ll never forget sitting in my room, watching a video of Dr. Rapaport explaining red skin syndrome and the withdrawal process, and crying with joy, relief and complete understanding. My father had led me to International Topical Steroid Awareness Network (ITSAN) and here, I was finally getting answers I’d been seeking for years. There was finally an answer, and I knew this was it. There was no other choice, I had to go through the withdrawal process, or my broken body was going to kill me.
Looking back, I realize I had NO idea what I was getting myself into. Nothing, not even all my suffering thus far, could prepare me for the battle I was about to wage, known as topical steroid withdrawal. I immediately got rid of all of my steroid products, and started to withdraw cold turkey. Within a day or two, I was covered from head to toe in what looked and felt like searing hot third degree burns.
My body couldn’t handle the shock, so it shut down, and I remained in a near-comatose state for 23 hours out of the day, for the next two weeks. I have very few memories of this time, but i vividly remember my caring, doting father, raising my eyelid, and shining a light into my eyes to make sure I would respond. I’ve found out since, that he sat over me during this time, checking my breathing, my pulse, scared out of his mind.
My parents knew that if they took me to the hospital, they would just pump me up with more steroids. I can only imagine the worry and the hard decision that my parents faced at that moment. Were they doing the right thing? Were we set out for this? Were we prepared?
All the preparation in the world, could not have prepared us for the confusion, fear, excruciating pain and trauma we were experiencing. But, just when my mom and dad were about to give in and take me to the hospital, I snapped out of this comatose state, and cracked a joke to my parents. They then realized that their little girl was still there, she was still alive, and there was hope. She wasn’t giving up, she was fighting like hell.
And, fighting like hell was necessary. I went through years of being mostly bedridden, unable to walk, move, feed or bathe myself. The slightest touch was excruciatingly painful. I was quite literally covered in what looked and felt like third degree burns from my scalp to the soles of my feet. I was oozing a foul smelling liquid from my skin, as if my skin was completely rotting away. There was skin covering every crevice of my room.
I spent most days trying to sleep the pain away, waking up, crying and screaming at the top of my lungs. (My neighbors thought I was being tortured at first until the situation was explained to them.) Then I’d force myself to sleep again in an attempt to escape the pain. Every movement, every touch, even air hurt my skin. I have never cried or screamed so much in my entire life.
I have suppressed much of this, because it has been such a traumatic experience and I have developed even more PTSD from it. I have bad social and general anxiety, panic, and fear now. I fear going out into public. I fear going to a doctor to seek help because there has been countless times that they just looked at me as if I was crazy and making it up. They didn’t offer me any help. That is why I decided to turn to natural alternatives.
My Friend mentioned Kratom to me one day, as he hoped it would be something that may help the severe pain I was feeling at the time. Before trying Kratom for the first time, I was spending 8+ hours per day in a bathtub just to try to cool my skin down. After extensive research, I decided to order a sample online from a trusted vendor and tried Kratom. It helped support my mood, and promoted a sense of well being and calm. It eased a little bit of the pain, but I was still in very severe pain given my circumstances.
When I joined Kratom groups on Facebook and met other Kratom consumers and advocates, I learned that you could also use Kratom topically for various skin conditions, so I decided to try that approach as well and used both soap and lotion made from Kratom leaves. It did help soothe my skin to some extent. It didn’t get rid of the rashes, it didn’t fully get rid of the pain, but it was comforting and didn’t hurt me like other soaps and products did.
For 3 and a half years I’ve fought an uphill battle with Topical Steroid Withdrawal (TSW). And, while I’ve found kratom and other dietary supplements to benefit my physical and mental health, I’m still in the process of healing.
I struggle daily, trying to deal with all the trauma, PTSD, anxiety, panic, depression, fear.. It’s extremely difficult and daunting. The more I start to get back into “real life”, the more terrified I am. I panic about being in public, I panic over people looking at me, I panic over my skin having any sort of change. Most of all, I panic that now that I’m trying to once again do something with my life, it will get snatched away from me again.
During TSW, every time I went back out into the world, started working or trying to have any sort of life, I went back into an awful flare and ended up bedridden again, with everything taken away from me over and over again. And to me, that’s the worst part. To get a taste of life, and then have it snatched from me time and time again.
The truth is, I’m terrified. And it’s easy to say “screw what other people say” and it’s easy to say that the key is to overcome the fears. But it’s much harder than it sounds. However true it is, it’s still very daunting.
I’m not giving up and continue my seemingly endless fight. With the help of herbal supplements like kratom, Chinese cat’s claw, skullcap, lemon balm, mulungu, etc, I am able to go out, see friends, spend time with my family, and even go on dates. It may take me longer to prepare than others and I must quiet my fears to whispers, but I try. I am currently in the process of earning a degree in business management and it wouldn’t be possible without the knowledge and support I’ve gained from my fellow TSW warriors and without the aid of natural, holistic supplements.
My mind is still boggled that all this happened to me over topical creams. But, I don’t really have a choice but to keep going.
~ Nina Ajdin
For more resources on TSW :
https://us7.campaign-archive.com/?u=fa611379d0120776a4a8fe090&id=9c71f00bbd
https://www.eczemalife.com/blogs/tsw/is-topical-steroid-withdrawal-tsw-real
