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Sophia Smith
Приєднався 24 лют 2021
I am a saxophone/woodwind player, composer and music educator living in Toronto, Canada. This channel is to document my journey through Topical Steroid Withdrawal to help spread awareness about the dangers of Topical Steroids. I've had eczema my whole life, but it burned out in my teenage years and was never a big deal. My eczema didn't come back until my mid twenties, when I started eating more foods that I was allergic to. This caused my addicted to Topical Steroids. I started TSW on December 2nd, 2020.
ONE YEAR of TOPICAL STEROID WITHDRAWAL - Updates on my skin, life and mental health!
Sophia's TSW How-To Guide: docs.google.com/document/d/1fFXHPk2ZWcUymHaLCzf981eW72-qFllvkRk0I47bkIM/edit?usp=sharing
TSW Instagram: sophia.sans.steroids
I MADE IT!! ONE YEAR of Topical Steroid Withdrawal. Wow. So much has happened this year, and it was the hardest year of my life by far, but I learned so much about myself and about what I want in life. I've learned to embrace myself for who I am and to be confident in my own skin. TSW sufferers definitely know how to appreciate the little things. I hope that I can carry these lessons with me throughout the rest of my life.
I remember being so terrified of starting TSW. I remember laying in bed, shaking and sobbing into my fiancé, Corey's, arms while I called my parents to tell them what was happening. I remember trying to decide whether it would be worth it to wait to start TSW until after our wedding and my traveling, but I am so glad I started sooner, and I can't wait to one day get back to wedding/travel planning, and playing music!! It has also been a year without playing woodwinds, which absolutely breaks my heart.
I have the best partner, parents and friends and am so thankful for them. I didn't know how I would survive this journey. There were many days where I wanted to end my life, because I couldn't take the pain, and there was no relief. I just wanted a way out, and there seemed like no escape. Mental health and suicidal thoughts are huge obstacles for many people going through TSW, but I am feeling so much more positive and clear headed now that I've been through a few flares. I wouldn't be here if it weren't for the love and support of those around me.
I am SO glad to be here a year later and to be doing relatively well. I know I may get bad again, but now I've got a year of this thing behind me, and I know that healing is possible!!!
TSW Instagram: sophia.sans.steroids
I MADE IT!! ONE YEAR of Topical Steroid Withdrawal. Wow. So much has happened this year, and it was the hardest year of my life by far, but I learned so much about myself and about what I want in life. I've learned to embrace myself for who I am and to be confident in my own skin. TSW sufferers definitely know how to appreciate the little things. I hope that I can carry these lessons with me throughout the rest of my life.
I remember being so terrified of starting TSW. I remember laying in bed, shaking and sobbing into my fiancé, Corey's, arms while I called my parents to tell them what was happening. I remember trying to decide whether it would be worth it to wait to start TSW until after our wedding and my traveling, but I am so glad I started sooner, and I can't wait to one day get back to wedding/travel planning, and playing music!! It has also been a year without playing woodwinds, which absolutely breaks my heart.
I have the best partner, parents and friends and am so thankful for them. I didn't know how I would survive this journey. There were many days where I wanted to end my life, because I couldn't take the pain, and there was no relief. I just wanted a way out, and there seemed like no escape. Mental health and suicidal thoughts are huge obstacles for many people going through TSW, but I am feeling so much more positive and clear headed now that I've been through a few flares. I wouldn't be here if it weren't for the love and support of those around me.
I am SO glad to be here a year later and to be doing relatively well. I know I may get bad again, but now I've got a year of this thing behind me, and I know that healing is possible!!!
Переглядів: 632
Відео
10 Tips for Healing Topical Steroid Withdrawal & 15 Week Update!
Переглядів 1,4 тис.3 роки тому
Here are 10 of the things that I have been doing to cope with Topical Steroid Withdrawal! Everyone's experience with TSW is different, and what works for one person may not work for others. This is just my own experience :) 1. Find a Naturopath -The supplements I am using are Quercetin, Vitamin D sourced from mushrooms, Zinc and Plant Sterols (Pomegranate Powder). 2. THC for Sleep - I use the c...
Life Update: Topical Steroid Withdrawal!
Переглядів 1,5 тис.3 роки тому
Welcome to my first UA-cam video EVER, documenting my journey through Topical Steroid Withdrawal! I involuntarily got addicted to medicated creams my doctors gave me to treat eczema. I am currently 3 months into it and will now have to spend 1-4 years recovering, dealing with agonizing nerve pain and horrendous looking skin among SO many other symptoms. The medical community does not give nearl...
How's your skin lately?
How is your skin now?
How long were you on steroid cream for? Thanks for sharing your experience.
Hello! It's hard to say exactly - I did use steroid creams as a child on and off, but I'm not sure how much. I used them occasionally as a teen, but it wasn't really a big issue, then I barely used them at all in university (however I did start using Protopic only on my bottom lip a few times a week). Then I had a few years where I didn't use them at all (only used Protopic on my lip), but in 2017 I started having allergic reactions and using them 1-3 times per week for about 3 years until I started TSW.
@@sophiasmith9844 thanks for sharing your experience. It's helping me thru. The steroids and protopics are so dangerous and unpredictable on how our body will react to them. Doctors prescribe them as if they candies. It's encouraging seeing you have gotten so much better.
@@Johnnymahon218 Totally!! Definitely lots of ups and downs, but hopefully we'll both be better soon!
The light therapy is covered in Ontario. Not sure what province you are in . The dermatologist near me has the stand uo booth in her office .
Is that UV light therapy? There are some different kinds, and unfortunately the kind I was getting wasn't covered in Ontario :(
@@sophiasmith9844 was in in your dermatologist office ? Oak Ridges dermatology . Just north of Richmond Hill
Thanks for your video. I'm about 2 year in TSW and my skin is still terrible even though I'm taking cyclosporine to help me through it, when will it end it keeps persisting. I used steroid creams for about 20 years off and on. Cheers from Melbourne Australia.
Hello from Canada! Thank you for watching :) I can't believe how long and relentless TSW is. Hopefully we see improvement soon!
@@sophiasmith9844 Cheers from Aussie.
Wow. You look great. I am 18 months steriod free, its was rough, TSW is a challenge you really need to pack patience and figure out a game plan to start a journey to healing. You will heal. Thanks for sharing your journey, it helps all of us going through this.
I did regress a bit after this video haha, typical TSW cycles. 18 months is such an accomplishment! No kidding, it has been a huge lesson in patience. We'll get there! Thanks for watching :)
Thank you for sharing. Getting these stories out is so importnt. You have come so far. I am in month 19 of TSW, so I get it! I am also sharing parts of my journey on my you tube channel, so feel free to check that out. Feel free to get in touch if you need to share experiences with someone who in going through it. x
Happy to share! I hope your journey is going well :)
Really unbelievable. I am so glad you are feeling better and educating the public about a little known syndrome.
Thanks so much, Dianna!!
Having Shingles Virus is not the end of life , I got cured after using Doctor Ani John herbal supplement within 14days..
♥️
You've been through so much. Thank you for sharing with us.
Happy to share :) Thank you for watching!
you have come so far. well done. keep on keeping on
Thank you!! :)
how are you now in your journey? Also how long were you using steroids for?
Hi! Sorry for the late reply! I am almost 10 months in now - definitely still struggling, but better than I was in months 4-6. I have less nerve pain which is amazing but still having trouble with my skin/itching/heat/sweat/adrenals etc. I used them as a child and then not really as a teenager/university, and then used them 1-3 x a week for maybe 3 years?
@@sophiasmith9844 thanks for the reply hope you are getting better. I stopped using them on the 15th august, last month I’m seeing some changes itching getting worse and spreading over my body but not had any really bad flares yet.
@@vira7925 Glad it hasn't been too bad for you yet! Hopefully it stays mild :) My face and neck were the hardest in month 1. Just this past month my hardest spots have been my hips and armpits which is pretty awkward! lol.
How long did you take topical steroids? Good luck on your journey.
It's hard to say because I used them as a child/baby and then only needed them super occasionally or not at all for years as a teen/early 20s. Then the last few years I was using them 2-3 times a week (once a day). But I also used Protopic as well on my lips for a few years and then needed it on my face too for the last few years. It's a crazy thing. Thank you!!
I asked my Dermo to put me in a coma whilst i was going through TSW. The prick didn't take me seriously!!
Haha! I've thought about that so many times... 😂
Thanks for sharing. So many people are going through this.
Totally! I can never believe how many people there are in the support groups... And how many people are going through it and don't even know it!
TSW is Horrific
It really is! 😔
Hang in there I am 7 months in TSW. I remember everything you are going through. It's gets better your temperature will eventually regulate. I am 62 years old this is the hardest thing I have ever done in my life. It's well worth it, no turning back once you start. Stay the course.
Thanks so much for the encouragement!! I cannot wait for the temperature to regulate 😂 It's definitely the hardest thing I have ever done too, by far. Thanks for the kind words 😊 Happy healing! ❤️
It is definitely the hardest thing a human can go through
What do you use when you have a flare up?
Because I'm doing NMT I don't put anything on my skin. I use ibuprofen for the moments I'm really struggling, but try not to use it every day :) Unfortunately, there isn't something that will "fix" a flare-up, and it's 99.99% just a waiting game. In this video I talk about what I do to cope: ua-cam.com/video/_u4oUTF6J6M/v-deo.html
@@sophiasmith9844 Thank you for your reply
how long did you use the steroids for? sorry you're going through this 😓
It's hard to say - I used them as a baby/child, but then I didn't need them much at all as a teenager/in university. The past 3.5 years I started using them more again (1-2 times a week). I also used Protopic regularly for the last 7-ish years on my face.
im not saying to ignore medical professionals but in my experience tsw wasnt something they knew how to treat. listen to your body and let time and nmt heal you
Yes, there isn't really a way to treat it... besides time :)
Excellent video Sophia, so sorry you are going through this. The medical community can't acknowledge it as they would then be libel, maybe some day it will come to them giving compensation. I was wondering about your nails all the way through, so great ending! Auntie T (signed in as Adam like an old lady). Sending love and healing.
Thank you! For sure...hopefully some day they at least believe it is a thing and can monitor patients on TS more closely. Haha, thank you!! <3
Thank you for this video and spreading awareness for TSW/RSS. I’m currently in month 5 of TSW and praying for a quick recovery for you ❤️
Hi Jodie! I hope it helped knowing you're not alone <3 Hoping for a quick recovery for you also :)
Hope you get well soon!!
Thanks, Stefan!!
Thanks for sharing. Some of those photos are really intense. I am glad your recovery is going in a more positive direction and I hope it gets better soon.
Intense for sure. I hope so too :)
Well done Soph! Thank you for sharing, those photos are so scary, sorry you had to go through this. Your hair looks great though! Sending lots of love, Aunty T.
Definitely a scary time! Haha, thank you!! <3
Sophia, thanks so much for sharing your challenging journey with the world. You are resilient! Hang in there and wishing you all the best in your recovery. Stay strong!
Thank you so much, Allison!!
Sophie! Thank you for sharing this. I didn't even know this was a thing. I hope your recovery is swift!
Thanks so much, Matt!!