I am the Swamp Witch: SJS Survivor (Caution: a bit of medical gore)

[Swamp Witch]

Hello, I'm Swamp Witch. I am a survivor of Stevens-Johnson Syndrome/TENS, also known as "The Lamictal Rash". Paul read my survey on episode 588 - Covert Incest.

I am looking to connect with anyone who has survived SJS/TENS. It's The Rash they warn you about when you get put on lamictal/lamotrigine. This is a rare, life-threatening reaction, defined by a blistering rash and tissue-sloughing process that affects the skin and mucous membranes. When up to 30% of the skin is affected is called SJS, if over 30% is affected it's called TENS (Toxic Epidermal Necrolysis). In my case around 65% of my skin was affected and I had extensive mucosal involvement as well. What that means is I had these blisters that came up all over me and then burst or detached. When all layers of skin are affected this is called a "full thickness" burn, or what we civilians call a "third degree burn". I had similar blisters in my mouth, eyes, airways, esophagus and genitalia. I went into respiratory failure because I couldn't breathe through the blood and gore in my trachea and one lung, and was placed on a ventilator for 6 days and later trached. I needed multiple blood transfusions and skin grafts head to toe, including my head, genitalia, and face. During this time I was exposed to drugs like Fentanyl and Versed, which produced some terrifying delirium and hallucinations. There are also parts that I don't remember, and sometimes I have these highly unusual nightmares that turn out to be memories blocked from my conscious mind.

It is pretty rare, and I have not met another survivor in the 2.5 years since it happened. My body has healed to a surprising degree; to look at me today, you would never guess something so extreme has happened to me. In fact once I realized I was going to recover pretty well, I began taking much better care of myself than ever before; the only real signs are my tracheotomy scar, and my eyes water constantly now so I'm always dabbing at them. So I appear very healthy and in good shape, even though I continue to struggle with diminished energy levels and other mostly minor health issues, on top of the PTSD and (likely mild-ish) bipolar II that I have apparently been suffering with for a long time.

If you have endured this or something like it, I'd like to hear from you.

Ask me anything, I'm okay with answering questions for the curious.

[manuel_moe_g]

Hello Swamp Witch, welcome to our little forum!

I went into respiratory failure because I couldn't breathe through the blood and gore in my trachea and one lung, and was placed on a ventilator for 6 days and later trached. I needed multiple blood transfusions and skin grafts head to toe, including my head, genitalia, and face.

This is so horrible. I am so sorry you went through this. It sounds like an ordeal you wouldn't wish on your worst enemy.

My body has healed to a surprising degree; to look at me today, you would never guess something so extreme has happened to me.

This sounds very good, I am so happy that this is the case for you, but of course the physical part of the ordeal can be overshadowed by the mental part of the ordeal.

I am most interested in the disconnect between what can be seen on the outside and what can be felt internally/mentally on the inside. Because they only saw what was apparent on the outside, my loved ones had no idea of my most painful times while I was experiencing them, because my challenges were all internal and mental. Going through such a unique and extreme situation, i would think you would have an insight on this.

Thanks for coming into the forum, all the very best to you!

[Swamp Witch]

Hey Manuel, thanks for talking with me.

You are right, I would never wish such a thing on anyone, not the worst villains that ever lived. No one deserves what happened to me.

About not being recognized for the trauma I have experienced, this is something I still do struggle with. It has always been difficult for me to speak up and state my needs for myself. This is something I have been working on in therapy, assertive communication. Sometimes at my job (I only work 4 days a week because I know I can't handle a full 5-day work week, I just know in my knower that it's not a good idea), my colleagues will say "man I wish I had Fridays off!" or "I gotta get on that program!" or little jealous things like that. They know that I went through that insane medical nightmare, but they do not know that I'm bipolar. What I do when faced with that is I respectfully say something like: "Oh I know it sounds really nice but...you really don't wanna be in this position where you need the time off just to function sortof normally." And it backs them off.

Yes it is troubling, the difference between what is on the outside and what is going on inside, because the story that still lives inside me is a painful, desolate, tangled, bleeding, lonely mess that cries to itself in the background of my life. It has been really helpful learning how to self-soothe/reassure myself, that my needs are my own, they are real, and they are in fact needs. I need the time off. I need fewer obligations. This is what I need. I used to concern myself with the feelings of others a lot, be very anxious about how other people saw me and what they thought about me (in fact I did stand-up on and off for a few years in my city, pretty sure that's a lot of seeking validation from outside the self), but my therapist taught me that that is not my business or concern. I went through hell to get here, just to survive. If anyone is jealous of what they see as special treatment I get, that ain't my business. I do deserve special treatment. If they need to see a doctor's note to legitimize it, fine, I can provide three. If they underestimate the effect it had on me, well of course they do! They don't have any idea. No one does, except my family and close friends who witnessed it. No reason to give a single fuck about anyone's little feelings or dumb judgements. This is what I tell myself lol, and I try to practice it well.

Thanks again for the questions and conversation, wishing you well.

[snoringdog]

Hello Swamp Witch,

Welcome! I read your post when it first appeared, then read a bit about SJS-TENS. Oh My God! What a horrible thing for you to experience!
And so unexpected, like your body betraying you or something, right? (Here - take these pills, they should make you feel better... then BAM )

Probably the closest thing the average person might relate to is an anaphylactic reaction, since these kinds of allergies are becoming better known.

Anyway, I'm glad you're done with that and working thru the memories and feelings. No wonder you are traumatized.

Interesting about doing stand-up. You can probably have a few chuckles with Paul about it - "war stories" and such. Did you find that it helped at all? Did you have a theme? Just curious. It takes courage to get out there and expose things that could come close to where you're at internally.

Anyway, you seem to have a good grasp of what you need in your life at the moment and how to express it. Clear, concise, balanced.. Good on you!

Wishing you well.

SD

[Swamp Witch]

Hello SD

Thanks for chatting with me.

You might be right about people who have suffered anaphylaxis being able to relate! That is such a scary thing to happen too, and I'd imagine they have a hard time trusting their bodies too, among other things. Interesting.

Yes this experience did damage my ability to trust anyone or anything. My doctor was supposed to warn me and they didn't, the pills were supposed to help and they did NOT, my body was not supposed to come apart like that and it did...I even had lawyers look at my case to see if I could claim temporary disability or receive compensation from Lamictal for my pain and suffering and they could not help me either. I was scared off pills of any kind to manage my emotional episodes for 2 and half years. It was terrifying for me to even take Tylenol (which, I found out, has been known to cause SJS/TENS sometimes! A LOT of drugs have caused it. Awesome.). I almost expect the worst case scenario in every situation, every day I am sort of prepared to rally all my strength and press through the worst shit imaginable, alone. That is one thing I know I can handle, haha, is the worst case scenario.

About standup, when I got sick I had not performed in over a year. So now I have not been onstage in over 3 years. When I was performing, I would talk about the anxiety and depression I dealt with and how absurd and funny these conditions could be, and I really did love the catharsis from that. It was so great to have someone who felt similarly come up to me after a show to talk about it, so wonderful. There was also a fair amount of female-specific material, since of course most comics around were men. I could not perform or write consistently, I believe this is due to both the untreated bipolar and the fact I was raised without a lot of consistency or structure. I could go weeks killing it, being productive with writing and stage time, and then suddenly I'd be unable to write or perform, unable to leave the house much at all for months at a time. So I went about 5 years like that, on and off and on and off, never got anywhere past the open-mic circuit. I've been toying with the idea of performing again in some capacity because there might be someone out there who needs to hear a story like mine. At this time, however, the comedy scene in my city has somewhat deteriorated, so there aren't really good rooms here anymore. It's very painful to see, and now to get to a good room I'd have drive at least an hour to another city.

[manuel_moe_g]

Yes this experience did damage my ability to trust anyone or anything. [...] I almost expect the worst case scenario in every situation, every day I am sort of prepared to rally all my strength and press through the worst shit imaginable, alone.

Wow, this is staggering. I acknowledge your great pain and suffering and lingering effects.

I've been toying with the idea of performing again in some capacity because there might be someone out there who needs to hear a story like mine.

What a gift you have to give! If you could perform again, i would love that so much!

[Swamp Witch]

Hey Manny

I thought it might interest you to know, a couple weeks ago I did do a set at an open mic in my city. It went well, I was open about being diagnosed bipolar and the crowd was good to me and liked me. I also had several audience members speak to me after and give me compliments, which honestly felt really validating. Performing after being so sick did help me feel like this is something I can still do, I definitely still have the skill to speak in front of people and make them laugh for a few minutes, which was a nice boost to my self-confidence. However I do have a pretty intense stress response to performing, it has always been very hard on me physically to perform in front of people even though I like to do it. So, in conclusion, I'll probably tell jokes every now and then, but it can't be a big part of my life at the moment.

[manuel_moe_g]

I'll probably tell jokes every now and then, but it can't be a big part of my life at the moment.

The important thing is that you have proven to yourself you are still a creator and artist. Fantastic stuff, Swamp Witch, so proud of you, you did it!

[oak]

Swamp Witch, congratulations for getting up there!

Btw, I just searched NIH PubMed for recent research on SJS, and it looks like there is some movement and progress.

I’m not a scientist, but it looks like they are trying many drugs and other interventions to address SJS and TEN.

[snoringdog]

Hello Swamp Witch,

Congratulations on what I'm sure was a fine performance!

Here's a well deserved round of applause!