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Monday, 26 May 2014

Kidding Myself?

OK so I admit defeat. I think I've been kidding myself that everything is fine and dandy, my skin is alright but the harsh reality is that it isn't. Right now I'm really struggling with it. I have widespread redness and I just can't stop scratching. I've actually reverted to wearing my Dreamskin pyjama tops to bed again in the hopes that I won't scratch myself silly. Yet despite my best attempts it doesn't seem to be working in my favour.

I am so upset that I'm back at this point. I do think the stress of the move has played a large role and it looks like stress will always go hand in hand with making my skin flare up.

Today I am having a moisturiser free day, laying unclothed sandwiched between a towel that I have laid out on the couch and a fleece blanket to keep me and my modesty warm. I'm so dry, itchy and flaky that I could cry.

On the plus lack of moisturiser = lack of redness.

My inner thighs 

Left arm

Chest

Close up of chest

Right side of face

Left side of face

Scabby, weeping, flaky ear.

The back of my right knee

Back of right arm, I've tried to capture the weepy bit which is shadowed at the top.

19 comments :

  1. This is maddening. How far in are you again? I'm finally past the HORRIBLE first few months. The crazy, wet, bat shot crazy face and am on to the dry, red, inflamed stAge...

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    1. Hi Jen, I just reached the one year mark a few days ago. :\

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  2. Ouch ouch ouch, you poor thing :( hope you have a good rest and it starts looking up soon.

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    1. Thank you! I hope it gets better soon too :(

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  3. Dang, Jenny, how disappointing and horrible for you. But lots of people flare at 12 mos, apparently, then the real improvements start... Lets hope this is the case for you too. I know what you mean about the lack of moisturiser=lack of redness. But the tight feeling and the ancient wrinkled face (for me at least as Im 46) is unbearable. I can also relate to the stress = flare. This happens to me too. Hope things improve soon... Bloody steroids. Bloody betnovate. Have you tried shouting "FUCK IT!" really loudly over and over again? Useful for stress release.

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    1. Haha I haven't but maybe I should :p Hopefully it will start to calm down again soon. I need it too really!

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  4. Hi Jenny
    I have been following your blog for last 6 months or so and am about 4 months behind you with TSW. Terrible time for you at the moment looking at your photos, must feel like hell. Can i ask you if you have made any dietary changes and what moisturiser you use(when you do use it) I recently went dairy and wheat free and its made a real difference to how quickly my skin heals, it absolutely shit not been able to eat bread, milk etc, but id rather feel comfortable than sore, hot itchy etc. still feel like that but a lot lot less. I also make my own moisturiser and definitely don't use vaseline it made my skin erupt everywhere and would not heal for months. I know what works for one person doesn't do for another but i'm always looking for ways i might improve the quality of my life while going thru this HELL. I live about 10 miles out of Leeds so i'm a northern monkey. If you want any info about moisturiser, diet etc give me a shout. Ive used steroids for over 40 years albeit most just hydrocortisone 1% but also betnovate and other potents ad hoc along the way. Regards tracie

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    1. Hi Tracey,

      Thanks for your comment! I haven't actually made any dietary changes, no. Though it would probably be in my favour to intake more fruit and water and cut down on a lot of the other stuff I'm eating. At the moment I'm sadly back to using the white soft paraffin because I feel I need grease but no doubt I'll cut down on it again shortly. Nice to know that you're nearby though and I wish you well in your own journey :)

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  5. I also have eczema, but it's only a fraction of what you have to deal with. I hope that you'll keep fighting and that you become better someday. I've found eczema is truly a vicious cycle and stress is almost always the cause of when I start to feel that itch. But, I'm sure there's no need to tell you that... aside from the fact that you definitely don't seem to be keeping your chin up! Sorry, that was in poor taste.

    Today I learned that my near-deathly-ill grandmother has been tested positive for MRSA as a carrier, and I had just bought a ticket to go and help her and my mother in an effort to help my grandmother recover. Now I learn that apparently people with eczema are at higher risk for MRSA, and see your blog--I honestly am not sure what to do now. If I go, I risk getting MRSA--if I don't go, my mother will have to deal with the situation alone, and I may never be able to see my grandmother again. And even if she does survive, if she is an MRSA carrier that may mean I can't see her in the future anyway--much less if my mother picks it up from her. And my father is diabetic. If my grandmother passes away and my mother becomes a carrier... I don't even want to think about it.

    I'm sorry, I have no advice for you--but I wanted to share my situation as you're sharing yours. I apologize if it's a burden rather than a support, but I'm rooting for you and can understand part of your pain, at the very least. I understand I've pretty much dumped my problems on you masking it as trying to show I can understand, but I do have one positive thing to say: seeing your blog and your comments about MRSA will help me make a more informed decision about the risk I am deciding whether or not to take, which may prevent myself and in turn who knows how many other people from being infected with MRSA. So, thank you.

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    1. Hi Anon,

      Thanks for commenting. I wouldn't worry too much about MRSA as everyone carries an amount of staph on their skin, it's only when it colonises that it can become a problem. I definitely wouldn't distance yourself from your family though just because your grandmother is a carrier, it just isn't worth the heartache! Just remember to use good hand hygiene and I don't see why it should be such a problem. I only ended up with MRSA because I was hospitalised with an infection and was moved about from ward to ward despite the nurses being under orders to keep me in quarantine away from everyone else. Silly nurses. Besides MRSA is just a form of staph that can't be treated with common antibiotics, it just needs a different type to be treated. Besides when it infects the skin, it tends to be not so serious an infection as to getting it internally, during say a surgery.

      Hope this sets your mind at rest a bit.

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    2. Thank you for the quick reply. I don't want to burden you with more of my consideration, but I will definitely keep your words in mind as I make my decision on what to do.

      But, since it is more positive and beneficial to anyone reading to discuss this, I would like to question you here--you say that most people carry an amount of staph on them. This is what my mother told me as well when we discussed the issue today. However, according to my limited research and understanding, while it's true that 20-30% of the populace does carry staph on them, MRSA is a certain strain("race") of staph that is only carried by about 1% of the population, and is potentially a much more dangerous and persistent strain of bacteria precisely because it can't be treated with antibiotics. Staph as a whole is not considered a huge problem by the medical society, and thus the vast majority of people carrying staph are not particularly a concern, but MRSA is. Apparently, while treating it with certain drugs is possible, eliminating/curing it so that you're no longer a carrier or it is no longer present in your environment(aka house) is extremely difficult if not impossible. I really don't mean to be rude by saying this, but to my understanding, you're still having problems with it yourself, aren't you? It sounds like you've gotten it repeatedly over the past year or two, although I've barely just found this blog, so sorry if I've misunderstood something or am being insensitive. Because my father has diabetes(where it's a much more serious risk) and is very old himself, I can't afford to come home bringing an MRSA bomb with me even if I could afford the risk myself, especially if I am susceptible to it as an eczema patient(and I have other mysterious health problems as well--a surgeon thought I had Crohn's disease but I guess I don't?).

      Hah, I said I wouldn't bombard you with more considerations and I ended up doing it anyway... sorry. But I feel this could be relevant to any eczema patient.

      Either way, for now my primary sources of information are Wikipedia and various information I've been searching through today on the oh-so-credible source that we know as the internet(as well as basic biological knowledge--I used to be a bio student), so based on what you've said I'll try to put my mind at ease until I can talk with a doctor. Thank you again and sorry if I've come off as paranoid.

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    3. Hi again Anon,

      You're wrong about my suffering with MRSA. I have only had the MRSA virus once because of a hospitalisation I had. Yes, I have had staph infections prior to this but not resistant to common antibiotics. The way you can look at it is you can catch an infection, serious or not, from anywhere at any time and MRSA as a skin infection isn't usually the massive "super bug" it is thought to be when issued on the skin, as I said, it is when it internal that it is harder to treat.

      I would however recommend you speak with a doctor if you do feel that this could impede on your family life as I myself can only talk from my own experience and I am far from qualified from talking about it in a factual manner.

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    4. Also I forgot to say that I'm no longer struggling with the bout of MRSA I had. That went out of my system months ago. If you read my blog in full you will see that I am recovering from the harsh effects of topical steroid addiction and am slowly building up my immune system from the immunosuppressive drugs I was made to take for 3 and a half years. The body undergoes various stages of healing and weeping skin with wide spread redness and itchiness are just some of the horrible symptoms. You can read more about it on itsan.org.

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    5. If that's the case, I'm sorry for the misunderstanding that I had. I assure you it was my fault, because I've only had time to briefly skim your blog in addition to all the other things I've had to look at/do/think about in the past hours since I've found out about this. I think that I will steel myself and go down to see/help them. Thanks once again for your words and blog, if you've successfully fought off MRSA it helps me be more confident. I wish you the best of luck, I can't imagine how hard it is for you.

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  6. Hi Jenny
    I also used soft white paraffin/petroleum jelly(same intrusive chemical) and found it actually messed up my system cause of the harsh base its made from(paraffin) Even though the greasiness helps the chemicals actually aggravated my body/skin. When i see how you are suffering i just need to pass on what i have found through my own experience and if i can help just in a small way to alleviate your discomfort then its worth it. I make a rich greasy moisturiser from mango butter(naturally heeling) almond, castor, jojoba oils etc. This made a massive difference to by body and allows it to heal quite quickly. All the products purchased thru ebay and cost me around £15 to make a massive 600g that last me a couple of months.
    Regards
    Tracie

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  7. Dear Jenny

    last year my eczema [which i had always been told was the seborrheic type] became terrible for no reason i could think of, i literally couldn't walk because the skin on my legs was so inflamed, and on my arms it went all the way down to the wrists and onto the backs of my hands. At night my arms and legs would itch like mad for hours, i was covered in scratches. Having had treatment for moderate eczema for over 20 years, i didnt think my gp would be able to do much for me other than prescribe strong steroids, but after months of no change i was desperate so off i went to the doctors and saw a gp whose specialist interest was dermatology and she gave me some vit D ointment to try [dovonex - the one without steroids] and it has been really good, the itching has gone, the inflammation is 80% better. the ointment is greasy and gets on your clothes a bit. i wish i was brave enough to have taken some before and after photos, but i just wondered whether you have ever been given vit D ointment to try?

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  8. Ive had eczema all my life...but two years ago it became a living nightmare. My skin would flake so bad..i had piles of skin on the floor..clothes. .it was embarrassing. .I was extremely cold all the time...I could barely move from being in so much pain..I could literally take my finger and peel layers of dead skin..I tried everything. .went to several doctors. .dermatologist. ..ended up with a specialist with Ohio State University. .found out I had a combined staph and fungus infection mixed with my eczema. .I was treated with antibodic..special cream and fungus meds for several months ( im still getting treated)..but my skin is 89% better....I feel like im claiming my life again...I understand the struggle. .I still have my days but not like it was before..I truely hope things will turn around soon..We are extremely brave people ..courageous to deal with the daily challenge. .DON'T Ever Give Up!

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  9. Don't give up Jenny! It will get better, you are on the path to recovery, its just going to take time. 1 step forward, 2 steps back, unfortunately - but the hope is that once you're through this there's no going back, you'll be permanently recovered. Hold on to that! Take care, Louise x

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  10. Hi Jenny,

    I wanted to thank you so much for your blog - I've just finished reading every entry. I started having flare ups a few months back that my daily topical steroid wouldn't address and finally found the source of the issue (TSA/TSW, of course) with my first severe flare up this past Monday. Reading through your blog has given me both fear and hope... I am not looking forward to the months ahead, but having your testimony through this process will remind me that there is light at the end of the tunnel!! Thank you again for your blog.

    -Virginia

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