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Wednesday, 26 June 2013

26th June 2013 TSW

My skin isn't improving at all. It's weeping constantly throughout the night making sleep somewhat of a difficulty to achieve and my antihistamines are not working one little bit.

I'm currently dithering as of whether to start up the Ciclosporin again as in the back of my mind I have a feeling it may be what contributed to my recent hospitalisation. On the other hand, I don't know how much longer I can deal with the itchiness. It's that kind of itchiness that I would describe as "searing" just like searing pain that is endured when you have small scratches and when showering is magnified as you experience the pain in each and every single scratch. The searing itch to me feels on a similar scale to this as you feel each and every single scratch tingle with an acute, unrelenting itchiness. It's terrible.

As for my skin itself, Shane pointed out to me last night that I'm not bright red all over my face any more, I'm back to being blotchy which I haven't experienced for a few months. I guess it's just a form of healing. 

For me, it's really hard to gauge what is going on. I stopped using topical steroids in May even though I had been going through a tough time with recalcitrant full body "eczema". As soon as I started the Ciclosporin, by the end of the week my skin was becoming beautiful. I was really happy that the dryness was less apparent and I'd lost the redness. However the very next day obviously I ended up with my nasty infection of eczema herpeticum and a secondary infection of cellulitis, and since that time had taken antibiotics to treat the cellulitis. Skip two weeks later with the antibiotics finished and I'm back to being a mess.

Is it the lack of antibiotics? Is it the lack of Ciclosporin? Or is it just TSW?

It's just so hard for me to know what avenue to take with all this as obviously my body is at the end of it's tether. If I'm not reacting through my skin then I'm getting reoccurring infections. I say this often but I'm just becoming tired of the whole routine.

Anyway I leave you with some images. They're not brilliant in showing all the detail but they'll do. 


 A mostly white face with red blotchy patches

 A close-up. There's a lot of raw openness which you can see in the red as well as yellow and orange areas where the skin has thinned.

 Red open scratches on my neck that lead down to my chest, mostly due to the skin cracking open when weeping.

Tummy has started up again. Grr.

9 comments :

  1. Awww honey :( honestly reading your blog is like reading my own mind sometimes. Luckily my skin seems to be not too bad right now, the main damage is from scratching during the night so my legs are fairly cut up.

    Anyway, I was wondering if you've used Aveeno products? They're available in Boots and I love 'em because the oatmeal in them is soothing and lovely on your skin. Also: oatmeal baths! My favourite when my skin is sore and red and awful.

    Obviously everyone's skin is different but those couple things seem to be good for me, not as a cure or anything but the Aveeno is good as a moisturiser that won't sting/irritate, and the oat baths are calming/soothing as hell.

    xo

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    1. Thanks for your comment lovely :) I'm so glad I have other people to talk to. When I'm talking about my troubles to others who don't experience any of this I often feel like a fraud or something because they just don't understand at all. Even after having created this blog I still get people with stigmatised reviews. But hey ho!

      Yep, tried Aveeno in the past and it made my skin weep something chronic :( funnily my brother has the same issue (his skin is no where near the same state as mine though). I've never actually tried an oatmeal bath, more so due to the messiness it would create and I wouldn't feel clean. But I do eat a tonne of porridge so I guess I know it's not the oats that affected me with the Aveeno.

      Thanks for your input anyway :) xx

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  2. Hi Jenny - I have been following your blog for a few weeks now. I know this is a tough time - I am having it rough as well. I have thought about Ciclosporin as well and my derm would be happy to help me with that, but I decided against it. It suppresses the immune system, allowing for a higher risk of infection - from viruses, bacteria, or fungus. Your recent hospitalization may or may not have been due to being on ciclosporin. You have to weigh the risks - better skin with a higher risk of being back in the hospital or dreadful skin for a few months. No easy answer there. I thought I could go back to work full time if I tried the ciclosporin but because I work as a nurse, I am a HIGH risk of catching multiple different things! So whether I suppress my immune system, or I have open weepy sores, I just cannot risk going back to work full time. The bottom line is we all have to do what we have to do to survive - weighing the pros and cons of each decision. All I know is all us warriors will support you no matter what you decide! Hang in there!!!

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    1. Hey lovely! Thanks for your support - it means a lot :)

      I think my decisions end up being all the more challenging because I absolutely have to carry on working to provide enough income to our house hold and even then I'm on a very low salary, working part time. My partner earns over the threshold for me to claim benefits too so it's a bit of a catch-22 on that front! In order to carry on working I need my skin to be in a decent way as I work in retail with the public and the shop can be a very dusty environment sometimes which is no good for my skin as it is. So yeah... the big problem for me is that no matter what direction I go in whether it be cold turkey or chancing the Ciclosporin, I will probably if not definitely end up being too ill to work. My health sucks!x

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    2. Ouch! I so hear you! I too cannot claim disability because of my husband's income. So he is now working 60 hours a week! Every time I go to work (one shift per week) I end up in a worst state - not sure if it from exposure to so many germs or stress or both. I understand the catch 22 all too well! Thankfully the over time is available right now for my hubby AND he is willing to work it so we do not become financially destitute! If you go back on the ciclosporin - ask about taking an immune booster like Echinacea with goldenseal. I don't think they would interact but it is wise to ask first. Also I know probiotics are awesome for the immune system as well. Good luck dear!!

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    3. Thanks for that info about immune boosters - I'll definitely do that! Will also see if it's possible to see a nutritionist some where to see what else I can do. In the mean time I'll just buy some multi-vitamins with my food shop tonight. Unfortunately my fella is on a salary wage and already does a lot of hours, plus all his charity business on top of all that means he has 0 time to do much else. I've looked into working from home but they're either scams, commission based or I don't have the proper experience for data entry etc. I even started an online shop in the hope I could sell some crafts but my health just won't allow me to do it which is so annoying!

      Keep in touch xx

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  3. :(
    Could you not talk to your new derm about what direction you should go in? I really hope something comes up for you soon :(

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    1. I see her on Friday so yes, I shall be able to do that! Though after I last saw her even she was in a bit of despair as of what would be best for me. I just need my health to be better. Will buy some multi-vitamins when I pop food shopping after work tomorrow me thinks. Can't hurt.

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  4. Jenny, Oatmeal baths are really amazing when you feel awful, they were one of the only things that would comfort my boy when he was bad, and honestly they are not too messy! As he is a child he gets free scripts so I use the collodial oatmeal sachets by aveeno, but they are no different to any rolled oats at all, so if your scripts are costing you a fortune, just buy a bag in tescos! I just rinse them straight down the plughole and have never had a problem yet (bound to have jinxed myself now). The itchyness with this has to be seen to be believed, my son was hospitalised one and the nurses seeing how bad he was, was at a loss on what to do. They had never seen anything like it happen before.

    I know when I have seen the fancy natropathic docs for my boy years ago they said it is very important to buy decent vitamins is you are going to use them, and thing the brands they said were Solgar and Biocare I think. Also vitamin d really important, my sons bloods were so low, apparently steroids impair the metabolisation on that so common in eczema people.

    No idea how it works with adults but I know with children it is common to claim for DLA, might be worth looking into.

    Good luck on friday x

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