Did that really happen? Wow! Was it really that bad?
I'm not saying I forgot about all the sleepless nights, or spending hours getting ready just to got to the store. I haven't forgot that the back of my knees were so bad that I couldn't walk and limped everywhere. I haven't forgot THE BOILS. I still consistently check my skin thinking that there's just going to be one on my legs.
I did forgot about all the things I could/did do before going through Topical Steroid Withdrawal.
Like wearing whatever I want and not the same jacket over and over again because it was the only one that hurt me. I forgot how I wore makeup. I forgot what it was like to smile without having to worry about my lip splitting.
I almost forgot who I was.
I was so scared of losing myself from TSW but I can slowly see myself coming back. But there are something that are going to take longer. I don't think my hair will ever recover its original thickness. It's something I've come to term with, I'm thankful I have any at all. Also I have anxiety speaking and looking at people. It's something I avoided heavily for the first two years, but now that I can I find I stutter and jumble my words. This had never been an issue before TSW.
Topical Steroid Withdrawal is serious stuff. There are still many who don't believe in it and there are others who are already giving the condition a bad name. This is the best condition my skin has been in since 2000. Lichen Planus, Psoriasis, Eczema, MRSA, and Topical Steroid Withdrawal. I've been sick all of my 20's. Those are supposed to be my prime years, and here I am, dying. I'm happy others are realizing this, but sad so many people are going through this.
Also I'm disgusted at those who try to make a buck of this, or anyone who tries to glamorize this. I'm not targeting anyone or trying point blame at any websites but I'm starting to see this more often. I don't think it's okay having a blog, having followers, talking about this disease like it's the fad and trying to pitch "What make up is the best for covering up TSW? Check out my blog for more!"
You shouldn't be putting make up on your messed up skin in the first place! I don't like that you post pictures of yourself with a pouty face and full on make up and bandages around your neck. #Topical steroidwithdrawal. There's nothing wrong with a lil eyeliner or lip-gloss every once in a while when your feeling down. But when that's your whole gimmick.... Shame on you.
I do have MAD RESPECT for those who try to go deeper and learn why this is happening. The men and women who make these giant posts with all those silly pictures and graphs, I read them. I admire their strength in being some of the first, they had less guidance than us. I know many of these guys are veterans but these are the people you should be following. Those who may even healed and are still fighting with us.
I can relate to the thought about losing the prime years of your life. I suffered badly with my skin in my 20s because I didn't realise I was addicted to the steroids. I only got off them in my mid 30s and then the real "fun" began. I'm doing ok now but I will be over 40 when I'm healed. It does make me sad.
ReplyDeleteYou look great! So glad to hear you are getting your life back. You deserve it after all your suffering.
ReplyDeleteHey can you chat to me im wondering about this because i too am suffering at the moment :( its so hard please hope we can talk
ReplyDeleteI'm always here to chat, even if I am a little late. I believe I messaged you but in case you didn't get it I'm responding here to.
ReplyDeleteHi Cat,
ReplyDeleteHow are you?
I just want to start by saying I LOVE this post and your blog. I know how it feels to suffer with eczema to the point where you lose your hair. I lost my eyebrows at one point and yeah I got bullied.
I'm 19 and I've suffered with Eczema my whole life, I'm assuming just like you. I've just plucked up the courage to begin my own blog which will include TIPS I've learned for eczema management over my years, my own stories, photos of my eczema, how it's improved, supplements etc to take..
And I would just REALLY appreciate the support if you could follow me and recommend me to any other fellow sufferers you know.. I of course will be following back!
Here is my blog: http://itchyandblotchy.blogspot.co.uk/
I really want to connect with as many eczema sufferers as I can and see if we can all find a way to beat this disease together :-)
Please do follow and visit my new blog!
http://itchyandblotchy.blogspot.co.uk/
Thank you SO much.
X
Congrats on making it 3 years even though it might not feel like it. It's amazing MRSA didn't kill you. I think that's probably the worst case TSW scenario. It's really good to hear you're feeling decent at the moment, even though TSW has been hell. I hope it can continue that way and maybe your body has adjusted. I send you lots of hugs... I feel so bad for what you went through :( I wish I could be there to help out. Sounds like you have a lot of anxiety - understandably so - do you have someone supportive you can talk to about it?
ReplyDeleteHi Cat. I'm currently in my fifth month of tsw. This is horrible. I really can't take it anymore. Tsw sucks my life away. I have never seen my rash so bad before and I have funny bumps at the back my neck near my scalp. I'm currently 26. I should be living my life. I'm really mentally defeated and I'm losing patience with this whole thing. I know 5 mths is nothing compared to what you have endured. I am really thinking of going back to steroids. May I know after trying dr aron and weaning down on steroids did you experience further flares? Do you require higher dosage? Please advise.
ReplyDeleteI found Dr. Aaron to be rather flaky. He stopped emailing me after I "seemed" clear, instead of sticking with me and monitoring my progress. Part of his program has you fill out a progress report after a certain amount of time in order to show your progress. He was rather pushy in reminding me to fill those out, but I had to ask him 3 times in one conversation on what my new dosing would be become I got an answer along the lines as "what ever feels best for your skin"
DeleteI am still getting flares, I'm still struggling, but not as bad as I was.
At this point, I don't think I can go through TSW again.
I may have to wait until more research comes out or more studies, or new medication like dupilumab. But after everything I suffered through, I choose steroids again.
I'm still having trouble on quality or life over quantity.
There's a lot I'd like to do/see before I die.
While it's awesome to say "I was steroid free for _____ Months." I can't say I've gained anything positive from it. Yes, many people have healed but many others have not and are going on 3+ years.
This leaves me asking is it worth it?
Hi cat. Thanks for your reply. I went back on steroids as the whole tsw was taking a toll on my life socially but as a person it changed me to someone I'm no longer am. I wondered why did I put myself through this. I know steroids is a quick fixed. But life is short. I want to be able to be myself to talk to people normally not to hide away from my friends and strangers to travel. Many people may not agree and some of them has healed. I envy them and all I know is I'm not mentally strong for this anymore. Thanks for your reply.
ReplyDeleteHi cat. Thanks for your reply. I went back on steroids as the whole tsw was taking a toll on my life socially but as a person it changed me to someone I'm no longer am. I wondered why did I put myself through this. I know steroids is a quick fixed. But life is short. I want to be able to be myself to talk to people normally not to hide away from my friends and strangers to travel. Many people may not agree and some of them has healed. I envy them and all I know is I'm not mentally strong for this anymore. Thanks for your reply.
ReplyDelete