Tuesday, 10 September 2013

Month 11 August 2013

I can't believe I'm almost 12 months off steroids. Again although I may look pretty good compared to the first 6 months, I'm still waiting for the 100% healed celebration. I have been a bit naughty with the food this month and I have cheated my clean eating. My downfall from that red itchy skin in places like behind my knees, inner arms and face. So I'm in heaven munching on a chocolate frog but the day after itch, itch, itch. I've done that a few times to see if it's actually TSW or my food allergies. And yes food allergies it is. The side effects of withdrawing are still hanging around which are, swelling in the legs, itchy inner thighs and a bit of tight skin in the mornings and afternoon which I still find painful.

I thought I'd add some more pictures of my withdrawal this month to give you more of an idea what you will go through to get to the stage of steroid cream free living. And to also have a recap for myself as sometimes I need to look at myself how bad I was and to appreciate how I am now more.

But first here's a really good picture of me and my little man before the long coarse of steroids. Perfect clear skin. It wasn't long after this I stopped breast feeding and the first rash appear on my hand which prompted me to the doctors. Wish I could turn back time.



The following are a few before I went through the withdrawal. I didn't know what was wrong except each morning I wake up with a spreading itchy rash that just got worse and worse. The addiction was taking place and nothing was working any more. I was always covered in bruises too. I now know that steroids make you bruise very easily.








The next lot of pictures are stages from month one to current of the withdrawal. It was the hardest thing I have ever gone through. It certainly beat giving birth to two children, that was easy compared to this. Thank you doctors for taking away precious time from my life. I feel that I have around another 6 months to go before I'm completely healed but I can say it will be worth every inch of pain and suffering that I have gone through just to get my body healthy and working again normally. 







A very good example of the elephant skin everyone talks about whilst in TSW. Yes this is completely uncomfortable and challenging to walk!






 The swelling you can get is pretty intense. Some mornings I could barely open my eyes. My eye brows here you can see have fallen out. Looking very very pretty :)


My hand print on my leg to show you how red and burning the skin gets. Very very painful. I could describe it as being burnt by a fire. It blistered as well on some parts of my body. All this from stopping the use of steroid creams. And doctors say it safe! Yeah right..




 Check out the swelling around my neck. Elephant skin there also. At this time of my withdrawal I could turn my head to the left or right or up and down. Too much swelling and  skin to move it.





My tomato belly..red red and burning like mad..




 Turning a little white and turning a corner..


Almost no eye brows below but girls they do grow back and they grew back pretty fast compares to the hair on my head.




The famous red sleeve of fire. Always stops at the hand. A strange side effect of withdrawing. I never got anything on the palms of my hands..


One thing everyone mentioned whilst going through TSW. The white of my eyes were pure sparkling white and still are today.The eyes are the windows of health. They were never this white. They look like I have put some of those eye drops in them..Check them out below.




The good old purple legs. Mine looked like they were going to drop off. Its actually the blood vessels trying to work again after so much steroid cream applications. It constricts the blood vessels when the steroid cream is on your skin. End result when you stop using it is this below. And it extremely painful.


My belly below is how it looks today. I still have some scarring which looks like a c-section scare but its slowing fading. Constant scratching caused this.



So I have so many more pictures but I think the above gives you more of an idea of what happens. It's not for the faint hearted but if you're about to go through the withdrawal, this can give you an idea of what might happen. Everyone is different so not all the same things can happen. They can be more severe or less than mine. Hugs xooxo

This is me today at 11 months xoxox


 And to finish off this month, here's an excellent video of Dr M Rappaport discussing TSW and the causes. It explains everything you need to know and he's cured thousands of patients in the US of TS poisoning. My belly makes an appearance at the end of the video. It's worth a watch...

http://vimeo.com/68189383

22 comments:

  1. Wow - thank you for sharing this! Going through my own hell (skinatrophy.blogspot.com) - hoping that this is not permanent! More power to you.

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    1. Hi there Dennis

      Thanks for reading.. Its a hard slog but you will get through. Its not forever and if you can bear it, its all worth it in the end. I'm about to check your blog out. Feel free to add my blog to yours and if I can add yours that would be great. The more word we get this out the better and maybe soon more doctors will sit up and listen like Dr Rappaport :) xo

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  2. Thanks Megs, for posting. But which pictures show your current look?
    thanks
    E
    x

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    1. Hi Elaine..sorry for the late reply, I have been away.. You should see some more healing pics in months 7-10 but I have just added a face shot for you for month 11.. Next month, will take more pics from head to toe. Do you suffer from TSW? If so I hope this note finds you well xoxox

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  3. HI Megs
    thanks for the 11 month shot. You look BRILLIANT! I am at 300 days (10 months). I went cold turkey in Feb 2012, and at 5 months could no longer function and was forced back onto roids by the derms here in the UK. I gave up again in Dec 2012 and have been on ciclosporine since then. I am still red and ugly about the face and my neck is terrible, though everywhere else is fine (all my hair has fallen out too - and brows and lashes, the doc thinks its due to the toxicity of the ciclo) I hope 2014 brings better things for me (its been a nightmare, and such a long process). I am 45. I don;t know when i first used steroids. I know I never used much, even when young. But I did use small amounts of hydrocortisone on my face during the last 10 years. The process is so hard to attach a time scale to, but we all try to do so. Good luck to you. And well done. Those red pics of you, that was me too! Its great to see your improvement, thanks so much for posting. Were you a long term user? take care. Elaine xx

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    1. Hi Elaine...I used steroid creams on and off since being a teenager but only for short periods of time. I never got much eczema during these times, just the annoying rash which went after short term use. The real damage I believe was after I stopped breast feeding my son. I ended up using it twice a day from head to toe as directed by my doctor. This went on for at least two years... Im so happy for you to get off it again and making progress. I smile when I hear people have found the real cause and get off the steroids... Please keep me updated on your progress. Do you have a blog too. I would love to have a read. Im sure our stories would be very similar..hugs xoxo

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  4. Hi Megs

    You look great! We shared similar tsw journey. Like you, I never have eczema in my life. I gave birth to my first son in 2011 and stopped breast feeding after he turned 1. And since then I caught small eczema patches on my arms, hands and face which my derma gave me mild to strong steroids over the course of 6 months or so. At the end I got so swollen and had a course of 10 days oral steroids.... After that, I so happened to learn about itsan and everything else is history.
    I think a lot of these are due to hormones, and I feel so sad now that I can't spend time to take care of my son as much given my weak body. I m now 5 months in tsw.
    When did you start feeling better and more "functional"?
    Your son looks so cute in the pic!

    Brenda

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  5. Hey Brenda
    Thanks for reading x Yeah I think hormones played a part too and my food allergies to start the hand flare up. I think about 6 months I was getting it together. I was so nervous the first day my mum left me alone with the kids. But the inner strength kicked in.. Every day seems to get a little better but I am still up and day..whether its swelling, hives, tight dry skin its all a pain in the rear and I wish it away every day and think why me. Im now at 12 months I thought Id be completely healed.. but no. I look pretty good though from a persons view but for me, I still feel yucky. I hope this note finds you better than yesterday. Do you have a blog yet? xoox

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  6. Hey Megan,

    So you still feel like you're not 100% healed yet? Do you still experience itchiness or hives? Anymore red skin and dry skin? I am in a round of major flare-up now ( honestly I don't know how to count so I have no idea what round of flare-ups I am in now....), pins & needles feelings all over my legs and arms... Goush, I also have this "why me" screaming in my heart every single day... and I cried a few times already.. but I know I have to stay strong because of my boy and my family.

    I don't keep a blog for this horrible skin journey, as I simply can't look myself into the mirror sometimes. I am not a brave woman. However, I do keep a blog of my son and my dog... haha. So feel free to check it out... I haven't updated it in a while though given what I want to do everyday is just lie in my bed..
    http://puppymantau.blogspot.hk/

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  7. Hey Brenda
    Yeah absolutely not 100% . I have swelling in the ankles, knees..yes dry skin but in saying that if I dont shower for a few days my skin feels really soft. I think the water is now drying me out. Yes I still get the hives and itchiness is dying down but are persistent in the inner arms, behind the knees and inner thighs. Drives me mad but coping. If I had this before TSW I think I would be going mad, pain threshold has gone up 50 fold since going through TSW...its amazing how the body can work. Please keep in contact. If you need any help or advice Im happy to help..I will check your blog out right now Thank you !! xoxo PS dont worry you will get out of bed soon...xoxox

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  8. You're glowing in your last face photo! So glad it worked out for you, can't wait I have nice skin again!!

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    1. Thank you so much..Yes getting better every day but still not 100%. Its a matter of time now..I think a good burst of sun and salt water over the summer is just what I need. What month are you at now.. Its a terrible thing to go through but well worth it in the end..Hugs to you xo

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  9. This is amazing. Im going through the same thing however i don't have the same will power as you. Every time i start and my skin gets really bad i resort back to the creams as I'm not that strong. Cannot imagine going through this pain for 12 months. Also what food allergies do you have?

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    1. Hi there,
      Thanks for reading my blog. Yes its a very hard journey and certainly not for the faint hearted. I have no idea where I got my strength from. Im sure my kiddies gave me most though. My allergies are eggs, wheat, dairy, melons, kidney beans food wise.. xo

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  10. Thanks for your quick reply. Just another question. I have been using tacrolimus, a pro topic, is this also really bad. Will it not help with getting off the steroid creams? Could i get addicted to this instead. And lastly, did u have a blood test to determine your food allergy? thanks again. you are a true inspiration!!

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    1. Hello again :) tacrolimus is an immunosuppressive drug and is just as bad sorry. My derma tried to prescribe this to me while I was in hospital. Apparently you will get the same withdrawal as the steroid creams. I have some people on my support group that have used them and are now going through the withdrawal too. I had a blood test and to make sure it was correct I also did the skin prick test. Join my Facebook group and you will find some very good information there too. I hope this helps you in some way xoxoox

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  11. thanks so much, i really appreciate you help :)

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  13. Hi Megan

    Your skin is looking wonderful.. how is it going for you now... would it be completed cleared now?

    I'm wondering if you can advise me on whether you think I'd be able to handle tsw whilst looking after my 6 month old?
    We've just moved to a new town and I wouldn't have any help besides whatever time hubby is home from work .

    I came across your blog after finding itsan... and realising why my skin flares up with a vengeance after about 5 days of clearing up with the use of diprosone ov and wet dressings... It only really gives me relief for a few days .. and when the rash comes back .. It spreads to different areas ... It's soo horrible ..
    I've always had abut of eczema .. But it's only really gotten worse since I saw a derma who prescribed clobetasol.. Since then another derma prescribed diprosone ov with wet dressings... and tacrolimas for my eye area! he even said it wasn't a steroid and perfectly safe..
    After researching people's experiences I can see it will be a tough road ahead to overcome it.. But my main concern is whether it will be so bad that I won't be able to care for my baby .. appreciate any advice you have

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  15. I'm in my 13 month but I mainly have a problem with my face. It's so itchy still, that now I'm tapping it with my hands & can't stop. It's almost like an OCD thing going on, but if I don't tap it then I'll scratch it & the flakes come off & fly all over. My face feels chalky & dusty & any cream on it will make it red & even more itchy. Eyebrows are even itchy & they still haven't grown all the way back. Does anyone have any suggestions on clearing my face up? Thank you

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  16. I also want to know how long do the deep lines on the forehead go away? Thanks again

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