TSW, Day 82 – Punished for Doing Nothing Wrong

I just walked past a newspaper that was lying on the table and that headline is what caught my eye, “Punished For Doing Nothing Wrong”.

It made me stop and think.  THIS is exactly why TSW hurts so much, emotionally and physically and mentally.  Because all of us, in good faith, accepted these steroid creams prescribed by doctors.  We just wanted to manage our eczema and get it under control.  It is not our fault we’re in this predicament of feeling trapped in our itchy, red, bodies feeling hopeless that they’re ever going to emerge looking new and fresh and healthy-skinned.

If I was a drug addict, who had consciously chosen to pollute my body with heroin and meth and crack, and was now reaping the repercussions of withdrawal, then sure, in many ways, I probably deserved what was coming to me.

But that wasn’t me.  All I was, was an atopic girl with a history of mild eczema who didn’t want to have rashes.  I was even one of the few that would literally sit down with the folded medication info that comes in the box and READ the whole thing!  I wanted to be informed about what I was putting on my body.  But it never says in those pamphlets, “Hey, if you use these for more than a few days, your skin may get horribly addicted and you’re going to have to deal with a huge variety of disgusting, unsightly, maddening symptoms that are a whole lot worse than plain ol’ eczema”.  Nowhere in the printouts for Desonide, Protopic, Elidel, or Mometasone furoate does it say these things, or even HINT at the notion that your skin can get addicted and then go through a withdrawal.  I can tell you this because I READ ALL OF THEM.  And most doctors never tell you this either.  And this is why we’re all here.

I guess I am continuing to get better, even though it’s so true what they say, that it’s like watching hair grow.  TSW now is still unsightly and completely annoying, but a little more tolerable.  If I’m alone or in bed, I still itch almost constantly on some days, and I still have to have all my limbs covered (and my neck, on most days).  I just want to wear what I want to wear, instead of having TSW dictate my personal style (or current lack thereof, lol).  I still have a “skin curfew” where I need to be getting ready for bed by 8 or 9 pm at night or I get stressed out and itchy.  I constantly want to sleep a lot and eat a lot.  With the eating, I’m not sure if my body really needs many extra calories as it rebuilds, or if I’m just seeking to fill an emotional hunger.

Anyway, some of you nice blog friends wanted a pic of my new short hair, so here you go 😀  I have concealer on in this picture so my face looks good!  I just feel the need to point out I don’t have skin this clear yet naturally!  🙂

haircut edited

 

 

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19 thoughts on “TSW, Day 82 – Punished for Doing Nothing Wrong

  1. Amanda says:

    Love the haircut on you! I wish I had the nerve for a cut like that.

    And, this is a great post. You have such a way with words!

    I’m the same way as you with reading medication inserts. It’s too bad that steroids are so over-prescribed and doctors refuse to look at the potential for addiction/withdrawal. My blog isn’t even about TSW and I get so many searches for it reaching my blog. It’s scary to think how many people might be out there suffering from it.

    My skin has been bad lately too and I’m getting frustrated with having my skin dictate what I’m able to wear. It’s so frustrating and I end up feeling so frumpy because I only want to wear comfortable clothes that don’t irritate my skin at all.

    • Why thank you on BOTH compliments! That is the nicest thing I’ve heard all week that I have a ‘way with words’ 😀

      It IS scary! I don’t even want to think about people that are out there suffering needlessly. It’s also amazing to think that ‘adult eczema’ never existed until the 1950s, ironically the same time steroids came into topical use. :/

      Do seasonal allergies irritate your skin as well, or are you stressed out about moving? Just trying to pinpoint what made your skin act up, but we all know that’s often a futile exercise!

  2. Mie Ululani says:

    preeeeeaaaaach!!!!! bam. exactly. thank you.

  3. Great post! I had just made an appointment with my daughter’s doctor because I thought that we should at least let them know that we have stopped using steroid creams on her eczema. I feel better prepared for that converation now after reading this!

    I expressed concerns when her first steroid creams were prescribed but I was really dismissed out of hand by her doctor and was told that she needed treatment to ‘nip it in the bud’. I knew there were long term use side effects but I had never heard of TSW. If I hadn’t read your blog I would maybe have caved and gone back to using steroid creams on Alice. Your suffering (and that of the other TSW bloggers I’ve been reading on here) has helped let one little girl be steroid free for almost 2 months.

    So thank you so much! And great hair BTW!

    • Hey there GoingNaturalMum! I’m glad that this post helped! If you go on the ITSAN.org forum or look at any other TSW themed blogs, there are just tales and tales of people being almost bullied by their doctors because they wanted to stop steroids, or doctors dismissing that TSW exists.

      One of the last times I used topical steroids on my face, I had a bad allergic reaction to aloe, and the dermatologist used the exact same words, that I NEEDED to use topical steroids to ‘nip it in the bud’ and that it wouldn’t get better otherwise, even though I told her I didn’t want to have to use them. (I did end up using TS for a couple days because it was so bad, but I didn’t know all about TSW then). I feel that I will never visit a dermatologist again as I don’t want them to scoff at me or push TS on me.

      You are doing absolutely the right thing and are being a wonderfully informed and caring mother to Alice! I have complete faith that she is going to have smooth, clear skin in a matter of time. You are her advocate while she is too young to know about topical steroids and all this stuff. I don’t know if you’ve ever checked out this blog about a little boy that is going through TSW: klinestopicalsteroidhell.blogspot.com, but poor little guy, he has been going through it for SO LONG, it’s a real lesson not to use TS, especially on very young kids. Again, I am grateful I could help 🙂

  4. joey says:

    hey, there is an antidepressant called endep, you might want to look into. it’s effects include reducing itching.

    • Hey Joey, thanks for the suggestion. Have you tried it yourself?? I was just having a crazy itchy day a few days ago and I think it was maybe more stress related. Today I am less itchy, but I get worried that I do it out of habit since I’m used to doing it SO MUCH.

      • joey says:

        yes, it’s good. It’s a serious thing though so you should talk to your dr and research before making any decisions. There is a medical field called ‘psychodermatology’ which looks at the minds relationship with the skin. It’s well known that stress & eczema interplay.

        I find that I scratch as a matter of habbit & as a source of pleasure rather than actual itching which is a problem I’ve had to overcome.

        Have you tried the phenegram yet?

  5. Cheers to that! That’s definitely how I feel sometimes – it can make me pretty angsty. And I love your hair! VERY cute! 🙂

  6. hopeful says:

    You always just know what to say to all of us here. I love your hair. I too am suffering from a “very red” neck and face area. The chest I don’t care cause i can hide it. However the rest makes me wanna stay in bed…lol
    Could you pleaas update me as to what our using on your face and neck area and what makeup is working for you
    thanks your hair sure is awesome…good for you for being so brave…

    • Aww, thank you, you are so kind 🙂 I’m actually SO GLAD you posted on here, because I saw your question about makeup on the ITSAN feed I get, but I have been locked out of actually going into the forum and posting, and I wanted to reply to you! As I know what it’s like being all red and needing to cover up!

      On my face and neck at night I use grapeseed oil and then Vaseline over that. Sometimes I use Avene Tolerance Extreme cream but it’s really expensive, although it feels soothing and never burns or stings. During the day I use grapeseed oil and Vanicream with sunscreen, it’s the SPF 35 kind.

      As for makeup I use Tarte Maracuja Creaseless Concealer. I’ve tried other concealers but this one is really the best. Covers redness well and doesn’t dry out your face or look weird as the day wears on. Also I use Tarte Amazonian Clay Smart Mascara and an Almay eyeliner pencil on my bottom eyelids, these specific products have never irritated my skin.

      If you would like to chat some more about TSW or anything else please feel free to email me if you’d like! nubtorious@yahoo.com 🙂

  7. I’ve found that I’ve been wanting to eat more frequently and in smaller portions… Like once every couple hours! My smaller portions are really more like normal-sized meals. And then I get very hungry soon after. I’ve always had a pretty hearty appetite, but have never felt like I was starving after every couple hours of eating. Maybe it’s because our bodies are trying to heal and need more energy? I’d say just trust what your body is telling you. If your stomach feels hungry, have a bite.

    Totally agree with you about feeling like we’re being punished for doing nothing wrong. Sometimes I can feel like I’m going through this crappolli for something I’ve done… That’s how the world works, right?! Unfortunately, that’s just not the case with TSW… It’s more like we’re going through this for trusting our doctors’ expertise and knowledge.

    I’m totally digging your new ‘do! I’m sort of inspired to go out and get my hair chopped! It’s been a nuisance anyways and miss having short hair. Yours is so funky fun!

    • Yes!!! Me too! I’m constantly eating at work, and my co-workers will approach to ask something and be like, “sorry, didn’t know you were on lunch” and I will say, “no worries, I’m PERMANENTLY on lunch; I eat all the time!” Okay, good to know we are experiencing the exact same thing.

      Thanks for the hairdo compliments 🙂 You should totally do it, you’re a pretty lady (even if you don’t feel that way with TSW) and could rock short hair! It’s extremely freeing and feels good not to have hair touching my face and neck anymore!

  8. @ Joey – I agree with you that at this point, I mostly scratch out of habit and because it feels good. The past few days I have not been too TRULY itchy, but have scratched a lot due to that. Thankfully I haven’t had the uncontrollable itching lately that you get with TSW where I just want to rip through the skin. I keep meaning to try more holistic stress-relieving stuff like mindful meditation to calm the itch and make me more cognizant of it.

    Honestly I’m really wary of trying drugs because of how they can screw you up. I mean here we all are with TSW because of drugs. Also for example my ex-husband went into horrible depression and anxiety and panic attacks as a side effect from a medication, and had to deal with that for many months. So although I am grateful for your suggestion and it’s good to know I can look into those if things get REALLY bad, I probably will just stick to taking allergy pills every so often to knock me out when I’m super itchy. 🙂

  9. Daphne says:

    I’m feeling exactly like this blog post right now. I’ve had eczema on/off my whole life and followed doctor’s orders with topical steroid application. These past two years have been the worst ever- I never had it on my eyelids and cheeks until now. I went to several doctors for second, third, and fourth opinions hoping someone would tell me what caused eczema and what were the long-term effects of topical steroid usage. Instead, all of the doctors said there’s no cure, prescribed stronger and stronger steroids, said the meds were safe to use as long as I only applied them to eczema areas, even my face.

    Exactly 1 week ago I googled “tiny pink bumps eczema” and the first search result preview returned: “Topical corticosteroids can occasionally cause tiny pink bumps and acne, especially when used on the face and around the mouth.” FML! The majority of search results that followed were for TSW blogs, pages and pages of them. How is it possible that so many of us have TSA but none of these doctors have an idea about it? Why is it so easy to get a prescription for topical steroids? Why didn’t I see all these TSW blogs before? WTF!

    As soon as I read the FAQ at ITSAN, I understood why my eczema was getting worse. I quit topical steroids then and there. Every day since then my face has been getting itchier and itchier (a single strand of hair makes me want to tear my face off) and now I can hardly open my eyes because the eczema has spread over my eyelid creases. I just want to hide at home, but it’s not an option – I have to go to work. So even though I have to brave the outside world, reading your blog and many others gives me comfort knowing that I’m going to eventually get through this.

    • Hey Daphne… thank you so much for visiting! My heart goes out to you and all the other thousands of unsuspecting people that got into this mess with steroids. Because there are now SO MANY blogs and bits of information out there, I find it hard to believe that doctors are completely ignorant about TSW. I’m glad that you found the FAQ and finally had a solution to what your skin was going through! I know I was oddly relieved to know this was due to a drug and not just my body going haywire.

      The itching is the worst and it will get to points where it feels uncontrollable, but take each day, each hour at a time and know that you will heal. Having some kind of soothing ritual after work, whether it is eating nice food, having a relaxing bath, reading a book, etc., is a must as it gives you something to look forward to after the stress of facing people at work. And I think eyelids are the worst place for TSW. I looked awful and tired for months, so I feel you there 100%! If you ever want to chat or vent more, feel free to email me at: nubtorious @ yahoo.com. I can show you some more before and after pics via email too if you want. Speedy healing to you!

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