Disclaimer: I am not a doctor and what I chose to do was solely based my decision after spending hundreds of hours researching on my own. You know your own body best. Listen to it.
I’ve been holding off on this blog for a long time mostly because I’ve been procrastinating and digging up all this old info is a bit traumatic, but I’m finally getting to it now. Originally, I wanted to do a month by month post on what happened, but I made this slide slow of my powerpoint slides I showed during my skin talk in January, and it basically shows a quick glimpse of what my skin went through in chronological order over 12 months in just a few minutes. It would take forever to try and explain every little thing that happened.
Please watch the video below to see what happened to my skin, health and body in 12 months from Jan 2018 to Dec 2018:
On January 6th, 2019, I gave a presentation on my 12 months of TSW to a group of 40ish friends (mostly) at the Ballard Public Library. I wanted to do this so that I could talk to everyone all at once and wanted to let them know how much they meant to me and that nothing could’ve changed our friendship during my TSW, especially if we’ve had a long history. I still knew they cared deeply for me even though I never saw most of them. It was something I had to fight through almost entirely alone. Even my naturopath came, and I was overwhelmed with the support. I cried so much, cursed, educated, laughed and everything in between. It was amazing to see everyone there and everything that had happened all into one powerpoint presentation.
I recorded a video at month 4 explaining how it all started, my eczema history and what sent me into withdrawal here. I also kept a very consistent, detailed skin account documenting my day to day chores, routines and skin ups/downs. I want this post to be helpful to those who are looking for info on TSW and suspect they may be going through it themselves. And if they choose to go through TSW, I hope this a useful source to go to on what I did to cope to get through my hardest months. I also started recording videos bc I was watching others in TSW who were in similar months as me and seeing how they were doing and always hoped they’d reach a turning point, giving me hope.
Here’s some 101 on the condition, copy and pasted from ITSAN.
what is tsw/rss?
RSS or Red Skin Syndrome, also known as Topical Steroid Addiction (TSA) or Topical Steroid Withdrawal (TSW), is a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema.
“Topical Steroid Withdrawal” refers to the symptoms that occur when someone with RSS stops topical steroid use, reduces potency, applies topical steroids to reduced areas of the body, or applies them less often. Weaning, stepping down or ceasing use can all cause varying degrees of withdrawal symptoms.
In the RSS community, “TSW” is also used to reflect the timeframe of the withdrawal phase. For example, “6 months TSW” refers to the time that has passed since ceasing topical steroid treatment.
Read more at ITSAN.org
what does a topical steroid do to my body?
Topical steroids are prescribed for use on “particular spots” of the skin and are not meant for application to the entire surface of the skin, injection or to be taken by mouth. Some examples of topical steroid preparations used on the skin are: creams, ointments, oils, gels, and lotions.
Corticosteroids, often known as steroids, are an anti-inflammatory medication prescribed for a wide range of conditions. They are a synthetic, or man-made, version of hormones normally produced by the adrenal glands (two small glands that sit on top of the kidneys).
Topical steroids can reduce inflammation (redness and swelling), suppress the immune system, and narrow the blood vessels in the skin.
Read more at ITSAN.org
what are symptoms of tsw/rss?
Skin flushing bright red, resembling a sunburn
Visible and measurable flaking of skin – appears to be ‘snowing’
Skin cycling between oozing, swelling, burning, and flaking
Red sleeves: (arms/legs become red and inflamed, sparing palms/soles)
Thermoregulation altered (feeling too cold or too hot)
Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.
Nerve pain, sometimes described as “sparklers” or “zingers”
Enlarged lymph nodes
Eye dryness and irritation
Hair loss: (head and/or body)
Insomnia and altered body clock
Emotional fluctuations, depression, anxiety
Read more at ITSAN.org
women that i looked up to
Cara Ward - Cara is a woman in the UK and is the first person on how I learned about TSW a few years ago. I remember stumbling upon an article about her skin story in 2016 but never thought it could ever be me bc I didn’t use it everyday all over my body like I had read. I ended up buying her book on Amazon and reading it made me feel like I was reading my own story. She had written everything so specific and every symptom, I had been experiencing in the moment as well. I felt less alone and that she described the pain and feelings so spot on that I couldn’t even vocalize myself. I remember her always being open if I ever messaged her, and she showed me so much support, compassion and encouragement to keep pushing forward.
Camille Mateos - Wow, what can I say about Cam? Except that the hiking world is so small. She is also a gal overseas but had been following me on Instagram for awhile and when she had first saw that I was going through TSW, immediately she felt connected and wanted to help me and shared her skin journal. We spent so much time writing emails/messages back and forth, and I reached out to her on those moments where I felt like I was in my worst months. She showed me so much care and support during my entire TSW. On my one year anniversary, she emailed me the most thoughtful video message I ever received…from someone I have never even met. I sat and cried in tears while reflecting what a horrific year it had been, and I couldn’t believe I had made it through a whole year.
Amanda Timeoni - When I say the world is small, it really is. A mutual thru-hiking friend who has literally thousands and thousands of miles under her belt also went through TSW. She was living in Bellingham at the time but had commented on my FB post when I shared that I was starting TSW. Immediately, we connected on the same exact symptoms and we started texting each other daily about our ways to cope and new things we were trying. Even though she was just an hour or so north of me, we didn’t get to see each other until month 8, and we went on a little hike around Baker. When we saw each other the first time since we both started, it was the wildest feeling to see someone face to face who had the same exact skin, symptoms and knew exactly what you had been going through. We bursted into tears and were just so overwhelmed with what we had went through.
Zainab Danjuma - Once again, not in America, but I followed her YouTube videos religiously. We were right around the same months, and it encouraged me to see someone so close to me in the timeline. I loved her personality, and she was still funny even in the darkest moments. She brought me so much light and comfort. I also just loved that she firmly stood behind the fact that she was NOT going to touch any medication through TSW, not even the immunos.
Emi Shibata - I also just loved this girl. I didn’t really interact with her much, but I always felt her pain through her videos and felt so happy when she reached a turning point. She always talked about the daily grind and routines, and I resonated so much.
supplies that helped me cope
white cotton gloves - These were like a second skin to me. Though almost every night I ripped them off and scratched anyways, they were my safety net. In the beginning, I was using them and tried tying hair ties around my wrists hoping to help keep them on, but I always gave in and took them off. I’ve read stories about people duct taping the gloves to their arms at night. In my later months, I used them in public to help protect against germs. It also helped me mentally at work bc if I had the gloves on during break etc, they helped me not scratch as much during the day at work bc once you start scratching…you literally cannot stop until you’ve bled all over. I still use them at month 15 but have weaned off of them for the most part. I will mostly use them if I know I have to touch something that would irritate my hands or have mega germs. I also wear them under rubber gloves.
dead sea salt - I did daily (sometimes twice a day) DSS baths from month 1-7 to help with pain. Basically every morning I got up, I was covered head to toe in my own filth (skin flakes, ooze, blood) and my skin was SO tight that I had to peel myself out of bed to get into a bath. Somehow the warm water would be the only place I felt “somewhat” soothed from all the pain. But sometimes, I would also get very itchy in the bath. I would attempt to clean myself and sometimes pass out in the tub from sleep deprivation. Getting out of the bath was a nightmare though…for some reason when my wet skin touched the air, my skin would literally feel like acid being poured onto it. It was so, so awful.
tea tree oil - I added a few drops into my bath to help with infection
apple cider vinegar - Also added into bath to help with infection but honestly, I think this really dried me out being constantly exposed to it everyday.
jojoba oil - I was also slathering myself with all sorts of oils and moisturizers to try to keep my skin from drying out and that "rippage” feeling but if we’re being honest, there was no oil that would seep deep enough into my skin that would not dry up within 20 minutes, and I would be back to a prune. I tried anything from castor, avocado, olive, petroleum jelly (the worst), but I think I preferred jojoba in the end. Avo for the really dry days. I basically walked around as a giant greased body. It was also so awful.
zinc cream - On my super raw areas, I would slather on thick white zinc cream. It would burn a bit for a few minutes but I would leave it on all night/day and the area would be a little bit calmed down when I removed the bandages. This was also awful…it stained everything and the ooze/open wounds would stick to any fabric. I used a few different brands like Tom’s, Butte Paste and Stephanie’s but the Amazon one was the cheapest for how big the tub was.
tubigrips - I used these compression bandages to protect my skin as a barrier. Sometimes I would wrap my arms or legs up after apply zinc or just wear the bandages to avoid my skin rubbing against a rub surface.
ice packs - These were good for when my skin was radiating SO much heat and itch. For example, I would wear ice packs around my stomach or sit on one when I was doing long drives. My skin touching anything for more than 20 min would radiate and be really hot to the touch causing it to become a raging itch.
pillow cases - Having extra ones helped to also create a barrier for when I needed to sit somewhere in public. My legs were always shedding/itchy/raw, and I had to live in shorts so it was nice to sit on something soft and clean. Also they help if you need to wrap ice packs around your neck or just to soak up any ooze.
dry brush - During month 7, I started MW and ceased all exposure to oils, creams and water. My skin was still very raw and broken, so I started dry brushing on areas of my body that were more durable. When I started rapidly shedding after 4 weeks into MW, the dry brush was amazing on helping me clean off flakes every morning and speed up the shedding process. To this very day, I am still dry brushing every morning. It’s not a confetti party anymore but skin still powders off my body.
molly suds - The only laundry detergent I use now. It has only 5 ingredients and is super gentle. Though it did not remove any zinc/petroleum, it cleaned pretty well. I basically threw away any item that still had a film on it from my early moths.
bamboo sheets - Okay so after being gifted MOUNDS of sheets, I ended up loving bamboo ones. They were soft to the touch and my skin felt so good against it. Having plenty sets will help with laundry everyday.
loose, soft clothing - My skin started catching on most of my clothing and would pill almost everything I wore bc my skin was sandpaper. I lived in ugly baggy dresses for most of the year and an XL tank/running shorts I found at cheap places like Old Navy/H&M. I stopped shopping fast fashion a few years ago now, but I didn’t want to waste money on clothing that was temporary that I needed to get me through.
air filter - I ended up randomly getting one to help filter out dust bc I was paranoid about dust mites….but to be honest, they’re everywhere and we can’t avoid them. But I do like having it knowing lots of the skin brushed off my body were getting somewhat absorbed into the machine.
witch hazel - My facial routine now is just wiping my face w witch hazel and that’s about it. It cleans off the dirt and makes my skin feel soft and hydrated.
rose water - I’ll spray this one my face if it’s feeling dry. Just do a few sprits onto your skin and let it absorb in. It smells so good.
uncle harry’s shampoo - I found this at PCC last year. When my scalp was still broken, it would sting really bad, but now that my scalp isn’t oozing anymore, I love it! It only has a few ingredients and my hair feels SO clean afterwards. Some natural shampoos still feel greasy afterwards, but this one does not! Since my hair is so short, I do not use a conditioner.
bend soap co’s unscented goat milk soap - I do use soap on my body now bc I feel like my skin feels sticky after a few days from sweat and salt build up. My trail angel Shelley actually mailed me so many soaps from this company early in my tsw, but I wasn’t using any soap back then. But now, I’m able to use it and feel clean and not sting.
inflammatory - This was a very, very strict diet avoiding all foods that would cause any inflammation w the exception of some rice, potato and even citrus.
vegan - After about 6 mos or so, I started allowing myself some vegan desserts…my FIRST exposure to sugar in SO long. Then I cut meat out for about 4 months.
dairy/gluten free - I started feeling like my body was need meat protein, so I added it back just fine.
whatever but mostly clean - So randomly, I was craving a real sandwich and pizza, and I randomly gave in one day, and now I’ve been having dairy/gluten more consistently but I know it’s showing through on my skin. I’m trying to get back on a paleo diet, but it’s been really difficult on getting back to something so strict after being deprived for so long.
dairy/gluten/soy/added sugar free - This would be my prime ideal diet that I’d like to move towards to.
I think in the end, no matter how we eat during the beginning months, our bodies are going to flare. I noticed I would flare whether I ate perfect or not. I say, don’t stress about it and just keep your diet as chemical-free as possible while still enjoying in your comfort foods.
vitamin c - I took high doses in the beginning recommended by my naturopath. I take normal dosage now to help w my immune system.
zinc - Not even sure why I take these, but I take one a day.
biotin - When I noticed my eyebrows were getting buffed off from so much scratching, I started biotin and within just a few weeks, they grew back so fast! I take one a day for hair growth, and the rest of my hair seems to be coming in so quick and lush! I don’t really notice anything w my skin/nails though.
curcumin - Sometimes I’ll take this or turmeric to help w inflammation.
vitamin d - I always just take this bc Seattle has no sun.
magnesium glycinate - I love taking magnesium for bed. I’m used to taking it since it helped me on the pct for my muscles and helps me poop in the morning.
a new wardrobe
cjla basics - My friend Rachel told me about this mom brand. They pretty much market to post partum moms bc their fabric is so soft and stretchy. After I made my first order, I was hooked.
lulu crops - Since I normally live in my gf leggings, sometimes my skin still can’t hand too much friction so I wear these crops to work. They are loose, baggy and somehow look like slacks but are actually workout material! I don’t normally support lulu or their brand…but it was the only place I found pants that work for me.
everlane button ups - They have great stripes, basics and button ups that fit GREAT. If you can splurge on a silk top…they were worth it. I love mine to death.
true and co bra - My friend Emily first donated one of their bras to me, and now I’m in love. They are SO soft and don’t feel like I’m wearing a bra at all. I wished I would’ve known about this brand in my early mos bc I could’ve maybe gotten away w wearing these instead of no bra for months!
I had to basically change out my entire wardrobe post worst tsw months bc my clothes were either ruined from all the oils/zinc/petroleum or they were just still too rough to the touch for my skin. I just wear soft, baggy clothing now while still trying to be ethically conscious of where I’m buying from.
my current routine
I do sweat and get a “gross” feeling now, so I have been showering every 3-4 days. I try to go as long as I can without it, but I’m starting to experience normal ppl syndrome now where my hair gets super greasy and lil zits form in my scalp like my normal days.
Instead of changing out my sheets every morning, I just vacuum up loose flakes on my bed since I’m not oozing much anymore.
I still use a dry brush and brush my dry spots off. It feels good and my skin does not break.
I don’t wash my hands/face unless I have to. I clean my face w witch hazel.
the hardest part of tsw
One of the hardest things was when my friends/family doubted me when I first announced I was starting tsw and is something that I will never forget. They criticized me for diagnosing myself, told me to consider non steroid options and see a real dr. In my worst months, it was extremely difficult to hear bc it made it sound like they didn’t have hope in me and wanted me to give up. I kept repeating to them that I was only on month 3-4, and I had to keep pushing through to see what was on the other side but some ppl just didn’t believe me. It was mostly hard bc I was already self-doubting and to hear others telling you to go back to meds was prob one of the least helpful things to hear as I was trying with all my will power to stay strong.
The isolation was also one of the hardest parts for me. I’m usually pretty good at being intentional w my relationships, but this time I just couldn’t. The best thing for me and my healing was to literally isolate myself from those ppl who were toxic and surround myself w ppl who were easy to see and supported my choice for healing naturally.
I’ve never, ever experienced true depression before. So real, that it completed altered my brain and who I was. I reached a point where I saw no future of my life besides skin stuff and no longer wanted to live. I had no idea that daily chronic pain and isolation would do that to you. As a pretty positive and strong person as I’ve always been, it was a true wake up call on what a mental illness felt like. Please get help if you see any signs of depression.
PTSD is also real. Triggers are real. I’ve never experienced triggers that would haunt me to this day. I know that time and exposure does help in healing, but right now, I’m mostly avoiding those things. I go to the bathroom in the dark and tense up anytime I’m in my room/bathroom. I have not sat in a tub since I started mw, I’m terrified. I’ve also become a germaphobe and don’t like touching public things without my gloves on. There are places at my old pcc that will trigger horrible memories of me flaring at work where I tore my skin up in public. I cry when I talk about how awful my worst months were. I’ve never cried so much in my life than in 2018.
the best part of tsw
Getting a “second chance” at life. Being broken down in in the most painful and isolating way in order to be picked up and see life with a new set of eyes.
You truly see what matters in life and feel grateful of the little things.
Surrounding yourself w those who lift you and have been your friends for life.
It connected me with others who were dealing w health problems of their own. They opened up to me. They knew what I was going through. I know what they were going through.
Knowing that I healed myself w only natural foods and supplements. Not a single medication or synthetic chemical was put into my body to speed up my healing process.
Learning so much about my body, the corrupt health care system and natural ways I can heal myself.
It truly strengthened some friendships while letting some go, and I don’t think can be any happier.
things i would’ve done differently
First and foremost, I wish I would’ve started mw as soon as I could and dealt w the grossness early on. The baths and oils really destroyed me and the routine was so, so exhausting and time consuming. It saves SO much money and time and probably wouldn’t have felt as painful at month 7.
Shaved my head from day 1. Cutting it off shorter and shorter was just me wasting extra time trying to hold onto my hair for comfort, but the maintenance was awful and not worth it. Plus, how many times in your life do you get to shave your head? Do it while you can!
Kept exercising. I mean, I tried, but I couldn’t bc the ripping skin got too intense. I wished I would’ve just pushed through and kept going at least to keep up w my muscles. I completely lost all my strength causing lots of my back issues. But also so much of my time was consumed, so I don’t even know if I would’ve even been able to bc I was in so much pain, and there was always a chore to be done.
That’s about it, honestly. I felt like my journey was the way it was supposed to happen for me. Besides those things, everything was my own timeline.
my advice to you
You MUST stay strong. Whatever it takes to for you to get through it…do it for yourself. For me, I used memories of trail to help escape my most painful moments. I ate all the chips and vegan desserts I craved and I only saw the ppl I wanted to see. Do what makes you feel comfortable and don’t get too caught up in what others are doing that works for them and not you. Everyone’s timeline and bodies are SO different.
I truly believe that we learn and grow the most through suffering. Trials in life only make us stronger and the resilience you build out of this pain will be worth all the suffering in the end. I promise you that this will only make you a better person.
Document as much as you can in photos. Progress is very, very slow and the only way you’ll see changes is if you take photos daily. Whether it’s good or bad, just keep it going. Having my skin account was good bc it was a photo diary of what my skin did throughout my worst months.
Reach out to others who have healed or are in your similar months. It will help you tremendously in not feeling so alone. It’s extremely hard to seek support from those in real life bc almost no one knows what you’re going through and it’s hard doing this alone. The internet can bring so much good in these situations.
Use the tsw fb groups as a resource. I would basically just do a search for whatever “thing” was going to try and see what other ppl’s experiences w it was. It helped w research and seeing if it helped or not w anyone.
Do not be afraid to seek extra help if you’re feeling in the pits or want to give up. People won’t know and won’t be able to help you unless you ask. Please do not feel any shame for speaking out and asking. The tsw community is there for you, always.
This ended up being way longer than expected, but I hope it will be a good resource to go to for those just starting their journeys. As always, please contact me if you have any qs.
**This blog post contains affiliate links.