And KRATOM is “BAD MEDICINE ” ?

My Beautiful Little Monster: TSW and Kratom

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.”

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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.
24098895_10213490818242295_1795137722_nThere 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 One minute, I was a normal teenage girl — fun-loving, outgoing, hopeful — the next, I was confused, withdrawn and heartbroken.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.

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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.

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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?

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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.
24020140_10213490817802284_1197924271_nI 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.
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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.
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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

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6 Responses

  1. I Am 55yrs of age. On July 31st 2017 I was admitted to a heart hospital via the ER. On Aug. 1st a Gastro-Intestinal Doc’ was assigned to me. He came into my room & immediately began questioning me. “What treatment are you on for your Crohn’s?” I responded, “I’m not. I’ve been on a strict diet & use naturals products which both have proven quite successful. I did not want him knowing that I knew Crohn’s is caused by parasites & by takng what 3rd world countries take to offset contaminated drinking water…I got rid of those parasites many years ago. I was in no way prepared for his SEETHING RETALLIATION. Angrily he stated, “YOU WON’T EVER GET NATURAL PRODUCTS FROM ME ALL YOU WILL GET IS PHARMACEUTICALS!!!”

    And w/that he stormed out of the room. The following morning I had 3 big tests to endure. 1st abdominal ct…w/only one kidney….dyes/contrasts should not be used unless it is critical to diagnosis. I told the tech who was about to connect the line from the contrast to my IV that I cannot have the dye. She went to phone the dr..I fell asleep. The bed slid into the O-Ring as the CT began imaging & then…a very heating up began flooding thru out my body & I knew what had been done. The “FULL DOSE OF OMNIPAQUE” was given.

    Soon as this was done…I was given Lexiscan for the Scintogram…imaging of the heart as this chemical was taken up more n more. The 1st part of that test was about 15mins. While we had to wait to do the 2nd n last part of the Scintogram…I was taken directly across the hall to the heart stress test. I was given a 2nd dose of Lexiscan & went right into respiratory arrest. Listed on adverse reaction that knowingly caused death is….respiratory arrest & I HAD A DOUBLE DOSE…!! Emergency Team was ordered in & reversal agents given. Everything is still quite vivid…I didn’t wanted to be resuscitated…I did not want to be brought back to a life of horrific pain suffering..back into continuous increase of medically-doctor induced PTSD..LET ME GO..!! As you can see…I was brought back.

    Within an hour of returned to my hospital room the nurse came in w/a gallon of Golytely…an explosive bowel cleanser used to prepare the bowel for a colonoscopy. The nurses poured 3 large glass fulls into me & my heart went nuts…I was forcibly vomiting into the trash can while a nurse accused me of making myself sick. The anger pulled me out of it & I informed them that Dr. Joshua Whorton of Norman Oklahoma was discharged as my doctor & is to be replaced. I was discharged the following morning at 8am where I had to drive myself home…a 5 hour journey. Had to stop by an ER to get the medicine to regulate my heart.

    Dr. Whorton set out to kill me from the moment I stated Natural Medicines successfully treated My Crohn’s disease. And he wanted to get that Golytely in me which is CONTRA-INDICATED FOR PPL HAVING ONE KIDNEY & PERFORATED BOWEL. He did not want ppl knowing their multi-billion profit from Crohn’s was curable…he would see to it that I was silenced.

    I filed a complaint w/the hospital. Come October 2017 I received phone calls from Dr. Whorton’s office stating the Dr. wanted to schedule me for a “Colonoscopy”. I informed the hospital’s liason of this. Then in November 2017 I received yet more phone calls from his office stating the Dr had seen “something” on the Abdominal CT & he wanted a Colonoscopy scheduled. When asking the Nurse what he had “seen”…there was nothing in my files & so stated it was a follow up to the Crohn’s. Showed just how mentally sick he is & shows the level of sociopath’s tendencies have entered our medical profession. Absolutely there are those Dr’s Who Kill & Torture….and the amount of Medical Clients suffering from Medical-Doctor Induced PTSD is skyrocketing and is very much a reality as i is also a REAL-TRUE MEDICAL PROBLEM.

    I KNOW SHE IS TELLING THE TRUTH…I know how horribly she suffered…& I Know the personal hell & Medical-Doctor induced PTSD is Very Much So Real. I’ve screamed from that kind of pain too.

    Her story so moved me…it brought a “tonage of medical torture memories” back to me. Am so glad she found treatment & that her story has an incredible up turn. So many ppl are being so horrifically torture. We so need to Unite against Dr’s, CDC-FDA ‘n others who are taking away our Mercy (aka Pain) Relievers….those who are telling us that we must “accept a considerable level of pain in our DAILY lives”. This is all nonsense & medicine is better than this. No one & I mean NO ONE SHOULD EVER GO THRU & KNOW WHAT IT IS LIKE TO HAVE DRS who use their license as a torture & murder weapon.

    Natural Medicines…people are returning to them & getting healthier ‘n healthier. f

  2. Sleeping over 20 hours a day yet taking 8 hours of cold baths a day?

  3. Ths story has a great ending it’s called HOPE! Happy ths girl has her body image back w/onthe help of medical doctors#mostlychickens

  4. wow. And why I prefer using holistic medicines when possible after getting a DX of whatever Im suffering from . Terrifying.

  5. I am so sorry that you went through this..we are in a similar situation with our beautiful dog. He developed calcinois cutis from prednisone for his severe allergies…I had to make a set of clothes for him and he is wearing a cone to prevent self-trauma ..his skin broke out all over with cacium filled lesions..the worst on top of his head..they are healing and slowly going away with the removal of the corticoidsteroids..but what a nightmare..I really feel for what you have been through…you are a lovely young woman. It is supposed ot heal completely with the removal steroids , for dogs about 6 months..but it’s been such an ordeal..

  6. Thanks for sharing Steve! My team did a great job with Nina’s story. Lisa Melchor worked with Nina on her story and since I’m still relatively new to blogging the lay out was a learning experience. I hope to have more stories. #TeamKratom

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