3 Years TSW. 36 Months TSW. 1095 days TSW. January 25th 2015-2018.
Incredible isn’t it? To have journeyed this long through such a katabasis. The reflection on the loss and gains, ups and downs, triumphs and devastations… it’s like a completely different life.
I’m not healed, sadly. But I’ve been coming to terms with that. The longer we suffer, the less likely we feel we will EVER heal. I know it f**ks with some minds. I get it. You feel like you are bound to suffer indefinitely, which really means for the rest of your life. But I don’t think I will ever be able to buy that. It may slip into my mind, but it never sticks around for long. Our bodies are complicated machines, but machines are explainable. We all tick in our own eclectic ways, which means there are things we just need to figure out about ourselves. I truly believe I will get through this by figuring out my body — and so will you.
Right now, my skin isn’t too heinous! It’s been slow and steady, but I’ve felt a shift. Will it last? Who knows?? I certainly hope it continues on the upward track, but there is never a guarantee with this sucker of a condition.
I knew December was going to be a tough month for me. It would be filled with many emotions stemming from separating permanently from my husband a year ago. I needed to focus my energy on something positive. I started to work out with a specific regimen and routine. Then, on January 1st, I started doing Whole30, which is basically an even stricter Paleo.
I’m not sure what element in my altered routine has been helping with my skin, but I can say that anxiety has been a huge factor in my TSW journey and since beginning to work out again (something I used to do HEAVILY prior to TSW), I have felt more confidence and less anxiety. Working out for me, exerting energy, has always been such a cathartic process. I needed that back in my life. I’m so glad I’m able to do it. Does it sting? Does it burn? Does is annoy my skin most days? YUP to all three. But it’s been worth it for me.
So, things I’ve changed that I feel may be a factor for me:
— Diet: Even when I was eating healthy before, I would still munch on sugary snacks. I have the worst sweet tooth that I battle, especially with Twizzlers and Mint Chocolate, but since cutting that out for almost 2 months now, I think that processed sugar was not doing my body well. That could be a factor. Cutting out dairy or wheat may not be the biggest factor, but I do like eating this healthy just for my own athletic body building purposes. Now, Ive had more than enough comments about, “why aren’t you doing vegan? Meat is bad for you.” Look, like I’ve mentioned above, our bodies function differently from our neighbors. I tried going vegan for a whole month back in August and it drained me. I didn’t like it at all. I still eat plenty of vegetables, fruit, and good carbs on a Whole30/Paleo diet. I actually only eat meat for one meal a day usually. Sometimes it’s salmon, tuna, or tilapia, and no meat.
— Working out: It’s just good to get your blood surging, heart pumping, mind cleared, all of the above! Perhaps my body needed to do a little crying.
— Safe Soda: During December, I started taking Karyn Pickle’s Safe Soda from Australia. It sucks that it costs so much to get here in the states, but it’s something new I’ve introduced into my routine. At first, I did as she said with 4x a day internally. I was never able to keep up the routine of 2x a day in the bath since I don’t bathe anymore and my skin doesn’t seem to want to sit in a bath anymore unless it’s for relaxation (and that doesn’t happen atm). After a month of 4x a day, I have only been doing 2x a day, sometimes 3x if I’m able. I think people who are doing very poorly could give it a shot. She said it could take a few months for it to kick in, but you never know. It helps to alkaline our bodies, which perhaps mine needs.
— Elaj: My dear friend, Suhein Beck, who is in the TSW groups, gave me some of her emollient this past summer while I was out in California. I tried using it awhile back but my skin didn’t care for it too much. Now, since about late December, I started using it on my face. I really, really enjoy it. My face has always been one of my worst spots and this is the calmest it’s been. It’s still red and dry in spots, but I need less and less maintenance throughout the day. I’m still a huge advocate of Stephanie HomeApothecary’s Shea butters (they are the best!), but Suhein’s Elaj cream is pretty awesome, too!
— Reading: To also help with the anxiety, I picked back up with what I love to do: read. I’ve already had to purposefully fall off the horse this week because I need to solely focus on documentary stuff now, but reading really helped me. I love diving into stories, especially if they make me think in a new way or make me feel alive. I got to read Call Me By Your Name, a book I’ve had on my shelf since it came out. When I saw the movie debuting, I told myself I had to read it before I went to see it. I read it in three days I believe, and FELL IN LOVE with the characters. I will shamelessly plug that book and movie in this TSW blog!
I just want sufferers, overall, to know they aren’t alone and that healing will happen. It may not come when we want it to, but it does happen. And it doesn’t hurt to try new things for your body. See what it wants. See what helps it tick. Withdrawal is going to do what it wants, but if you need peace of mind about a product or way of living, do it. Give it a shot.
I love you all so, so much. I wish my documentary efforts could be done in a jiffy but these things take time. I don’t have a team. It’s just little old me who is barely scraping by at the moment financially. I want this project to be done correctly and am HOPING to have a finished product by the beginning of summer. Cheers if it happens, but if it’s not until the end of summer, that’s what it has to be. I do have updates on my YouTube though! So you can check those out — YOUTUBE LINK
This happened in late December, but wanted to share how excited I was that this could still happen! My body is still my own. I am still here underneath it all.
Most of these were late December/early January, and then the last three were about a week ago.
My stomach has had much improvement, as well as palms, but my arms and hands go up and down a lot. I also wanted to show the shedding that still happens. My scalp as well is still flaky, but it’s gone down a notch since last month.
I also forgot to mention I PLAYED IN A SOFTBALL TOURNAMENT!! That was HUGE for me. I was outside ALL DAY. I didn’t seem to flare. I got a bit hot at one point, during the afternoon, but I was so ecstatic that I was able to participate. I tried not to get emotional about it, but these are the little hurdles that are building me back up to the old me! We won 2 games and lost 2 games. Super proud I hit the ball (ha!) and did my little part. They needed females to play (5 minimum) so I literally “stepped up to the plate”.
Love, B. R. Banos
3 thoughts on “3 Years TSW (Topical Steroid Withdrawal)”
So glad to see you doing better! Even though it is such and up and down road.
I have a question for you regarding the itch. When does healed up skin stop itching? My 3 year old has been off topical steroids for nearly a year. Feb marks one year since “severe eczema” covered more than 50% of her little body, and then traveled from head to toe. At the moment her skin looks better than it ever did in the past year but the dang itch is still present. Does it ever stop itching?..
P.S. I now have a 4 month old who’s eczema got very bad. Few diet changes and his skin looks sooo much better already. Steroids are never ever touching his precious body.
Thank you for all you’re doing .
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Hi! So happy to hear about your littlest one and your alternative approach!! As far as the itch, i couldn’t tell you =( It may be awhile. I may always have a small itch when Im healed. No one really knows the answer for that unfortunately xo
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I am approaching year three, next month. I was progressing well, going on the advice of my Italian derm, who said, ‘it will be horrible, but slowly, slowly it will get better and better’, until last summer, when i got a fungus infection under my breasts and in sweat areas. HOWEVER, we discovered for me at least, treatment with an antifungal stops the vast majoriy of shedding, and i am jsut basically dusty. I wouldnt say i was covered with fungus, but something had been going on. I have pink sleeve syndrome still, not red, some issue on my ankles and wrists and my hands are better and better. However everytime i begin to get scaley i use the antifungal and it goes away.
I stopped ts due to 40 years of issues with my face, and my face is my good area, but you have my sympathy.