Bird Scribble · TSW

The Threadless Labyrinth

“Miss, are you you sick?”

“Yes, I am.”

“I can tell because your neck is red.”

I didn’t have the energy or, quite frankly, composure to tell an 11-year-old student that my obnoxious cold has nothing to do with why I’m a red, blotchy disaster. At 44 months T.S.W. and succumbing to the plague that has been infiltrating hundreds of homes, I am admittedly lost.

I’ve been in this random flare ever since I finished the documentary. I’ve never been fully clear, but I’ve been more red than usual this past month. It honestly tears down my confidence and spirit knowing that I may never look like I used to before I got sick. Not just look, but not perform like I used to when I was athletic, and outgoing, and care-free in the face of sweat, or a fun swimming pool, or even a long night out.

Lately, I’ve only been given compliments on “my body”, as in my “nice figure”. It’s never the full package, just the parts that aren’t under dictation from Red Skin Syndrome. It sounds so narcissistic and pathetic to display, but when your only comments about your face are, “you should be taking allergy pills,” and the like, well… it’s demoralizing. When people know what I USED to look like, not the distorted, indefinite image that I am now.

Oh, and when I have people, normally people who don’t really understand my condition, come up to me and talk to me about their “dry skin”, I cringe and withhold the fuming rage that stirs inside, BEGGING to have what they label as their “dry skin”. What I wouldn’t give to know what it’s like to not feel like a cracking, plastic shell. Just two weeks ago I was such a mess that I woke up for work with my tubigrip VELCROED to my face. Literally.

People see pictures and think I’m 100% better, that I’ve gotten on with life. I’d be so grateful if that was the reality. Now, I am not UNgrateful for how far I’ve come and all the life lessons I have learned by growing through this painful process, but I am still wandering in this labyrinth. I sometimes don’t know up from down. Sometimes I have days where I see there may be a way out until, SMACK, I run into a hedge. So much of this is out of my control. There is no protocol, no golden thread to march us out of this bind.

I struggle, daily, with this: physically and mentally. I believe anyone with a chronic illness can relate, especially if it’s one you aren’t able to hide. I feel the weight of this condition crushing my chest, filling it with monstrous anxiety. It is connected to every facet of my life, like a virus I can not destroy. It is not a disease — it’s vivisection with no anesthetic. It’s constantly entering a world that indulges in love at first sight. I live in fear everyday that I go to work that some pea-brained, abhorrent child with an attitude will spout some cruel remark at me regarding my skin because I’m making them do work, and that I will be paralyzed by it. I know, so ridiculous. But it’s the truth.

Which is why, for good reason, I do not invest in a love life. It’s embarrassing enough to wake up alone with a piece of fabric stuck to your face. I don’t feel like adding a potential witness, or the potential of having my heart broken when they leave. I’ve caught a glimpse of the brutality invoked on Tinder, and Bumble, and Hinge, and blah blah blah, just mediums for men (and women…) to judge you solely on your looks, and when they don’t like what they see, remind you that there are plenty more swipes to be had. I’ve soldiered on enough to not put myself in that war. Rejection would not only be probable, but certain. “Briana, that’s anyone using those apps.” Yes, of course you’re right. But it’s still an uphill battle trying to deal with who I am now vs. who I used to be. You don’t like my style, cool; you and I don’t align politically, bueno; but knowing that someone else could potentially leave based on the fact that my condition gets in the way… I fear I would not recover a second time. I don’t want to be anyones burden or charity case. I don’t want to put someone in that line of fire. I’d rather just stay in the dark and live vicariously through my good friends’ romantic relationships and sexcapades.

And I think that’s fair. If you don’t love yourself like you should, then I don’t think searching for someone else to do it is going to cure that missing hole. I have a lot of growing to do, still, with this condition. On the days that I feel low, I can feel feel l o w. That’s something I have to fix, no one else can.

But I will say, I am filled with love and gratitude just the same. For every dark hour, I catch glimpses of sunshine by way of tremendous friendship and familial grace. That is something my condition can never take away. Whether they know it or not, my friends and family are my angels. Their laughter, and nights out, and sweet texts, and moments of encouragement are blessings. They keep my spirit alive. They keep me wanting to fight for myself, and for others; to never give up on this relentless journey. They don’t look at me and see a condition — they just see Bri.

So, even though I am heavy and weary inside my head, and even though my body does not wish to abate this tenacious redness and dryness, I know I still have plenty more to give despite any setbacks. I may not be where I wish to be physically, but I will find my path.

My compass may be faulty.

My heart may be fragile.

But I will find the way out of this labyrinth. I will find my golden thread.

Love, B. R. Banos

7 thoughts on “The Threadless Labyrinth

  1. do you have diet for now? Do you eat meat or some suppliments? What creams do you use?.. It seems not looks like tsw for this period of time, because it’s already too long for it. I understand you feelings and condition very well, may be you need make some changes/corrections in your strategy.. we are all have our own triggers, but at the same time have a lot of in common. My big changes started when i stopped eat all meat, sugar, milk; also i made a great mistake with using creams (not used it properly, it caused hothouse effect and made my skin much more worse). Wish you will find your way to the healthy skin!

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    1. Diet does not change TSA symptoms. It is not too long for her to have TSA also. In Rapaports papers and other sources show multiple cases have reached 4 and a half years. I am pretty sure she was patch tested already and has a good idea of what her triggers are. Not to sound too rude but she has directed a documentary, started a blog, and among other things…etc.The proof is out there. Its the patience that is hard to endure. I am on month 8, myself. I cant imagine going through almost 4 years of this, but I do feel like she will likely be healed within 4-6 months.

      Plus meat and milk can have good things for your skin like B-12 helps prevent chapped lips, chaffing in general. Milk can be very beneficial also. Eliminating key nutrients or fad diets wont cure her.

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      1. Ok, despite the fact, that my questions and advices may be sounds silly and inappropriate, to be clear i just translate my experience here and have a good intentions. I was going through tsw for 8 years and get over a lot; including the author of the post. Also i survived after getting a hospital acquired infection on my skin on all the body (beta hemolytic streptococcus), which i struggled for 3 months. It started skin necrosis, temperature was over 39-40. Doctors gave me 8 courses of different antibiotics orally and injected without result. In the long run they could do nothing and just sent me home (only acupuncture helped me to go out that nightmare). So, please, don’t judge me strictly. That comments above get me upset and i regret writing my opinion there… Meat, fish, milk, wholegrain bread are good products and contain lots of essentials for body. But after about 3 years after tsw i noticed, that eating meat, chicken and milk get me worse. I excluded them from my diet and it started better. At the same time i have never had allergy on that products before, so it was absolutely unexpected. That products should be in a ration, but may be later, not in flare but in remission. Thank you for your time and sorry if that not helpful.. i am sure all of us have its own experience in tsw and sometimes not ready to come back to simple things again. If it didn’t work that time, may be it going to work now

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  2. Hi Briana,
    I just wanted to to say hello, and that i still read many of these blogs and I’m still with you in spirit. I’m sorry you’re still suffering after so long, as I am. Its truly tiring. There’s a certain fatigue to my soul now after all the discomfort and itching and flaking over such a long time period.

    I first withdrew from topical corticosteroids in January of 2016, so it’s been over 2.5 years now for me. I’m still not better. Better than I was, but still not better in the important sense: TSW is still a drag on my quality of life. I’m uncomfortably itchy on multiple areas of my skin as we speak. I’ve been doing UV-B therapy, and going on and off different immunosuppressants. I even tried a new medication that was supposed to be groundbreaking called “Dupliomap/Dupixent” and it didn’t help much and game me bad conjunctivitis.

    I know personally how draining this is to the mind, over so long. It’s hard not to be pessimistic about ever returning to normalcy. Initially, I was under the (false) impression that most people recovered to normal within 1-2 years. I can say with confidence that what i’m dealing with now is still worse than the eczema i had before steroids. I’m sure comments like the above from Natalia are well intended, but it’s frustrating to see people say “it’s already too long for it.” I had a dermotologist tell me that like 2 months into TSW in 2016. The truth is, most people don’t even understand what we’re going through, expert or not, much less how long this takes. And I know for a fact from reading your blogs that you -have- tried tweaking your diet and reducing sugar and stuff like that.

    I also wanted to say that I’m sorry that I couldn’t contribute in any way to the documentary you worked on, and also, thank you for putting the time and energy into it. I haven’t checked it out yet but I will.

    On behalf of straight men, I want to say sorry for how much women are judged by looks. I’ve been a part of it and I don’t know how things came to be this way. I’ve been thinking a lot about relationships and attraction and society and things like that, and It’s a part of human existence that does depress me.

    I’m in a pretty low point myself. This TSW thing is pretty cyclical. Here’s to hoping you and I both get decent some time with minimal flaring soon.

    All the Best,
    Elliott

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    1. This is probably the nicest and most empathetic comment I’ve read in a while. Thank you. I had to read the comment above and let her words mainly go in one ear and out the other. They weren’t ill inteded, but nonetheless not helpful.

      Life with this is surely a rollercoaster and i do hope we catch a break. I hate when i hear stories about dupixent not working since it’s the only other avenue i havent really explored, but it does seem to obly help certain people and not everyone. All we can do is persevere.

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  3. Briana, I found myself coming back to your blog from time to time. I am sorry to hear that you are not doing much better. I am in the same boat, I am better than when I first started TSW. I am 26 months into TSW. I am doing UV-B therapy started March 2017 and I benefit from it quite a bit but I am not itch and flare up free. I got almost 3 months of itch free skin from July to October until then I started to flare up again. My neck, eye lid, fingers, inner elbows and wrist are swollen and itchy. The skin is sore and scaling from scratching. All in a sudden I fell to the bottom again emotionally. I am not writing this to make you more miserable but want to let you know you are not fighting alone. I wish I have a magic trick that can heal both you and me and others but…

    My skin condition has stopped me from enjoying a lot of precious time which I should be spending with my beloved husband and daughter. Instead, I spend many miserable days sitting on the couch and running back and forth to the hospital to get UV-B treatment. Life is so much more difficult for us TSW fighters. Please hang in there and knowing that there is someone out there praying for your (our) recovery everyday.

    Loretta

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    1. I truly appreciate this. Sometimes you feel like no one around you understands and can really relate to the emotional baggage of having “bad skin”, especially the ppl around me that didnt know me BEFORE all of this. They are getting to know someone who isn’t quite their self since im not able to be who i was before. So, thank you love, for giving me that reminder that im not the only one xo

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