Thursday, 25 August 2016

39 Months TSW/ BBC Eczema Documentary

Hi guys, this blog is long overdue an update!

So what's going on with me?

Well I'm afraid to say, it isn't exactly great news. I've actually been putting off talking about it because I don't want to discourage others. But about a month ago, I began to get a really itchy face and the band around my tummy where my top had been tucked into my skirt also triggered a heat rash reaction, due to the hot weather we have been experiencing as of late.

I figured with time and patience it would disappear on it's own, as it usually does. However a month later it has instead spread all over my body; my face, neck, chest, arms, torso, legs... everywhere.

I went to a walk-in-centre and was given a weeks worth of antibiotics as we both assumed it to be an infection. They didn't even touch it. This Tuesday just past I went to the doctors and all she could offer me were steroids, emollients and an extra antihistamine because she felt it looked more like an allergic reaction. Not great. At this point I'm actually debating using oral steroids just to help clear my system but the other part of me is screaming 'NO!' because it would ruin years of hard work if I were to rebound, and also get eczema herpeticum.

I'm currently having to take time off work because it is virtually unbearable. I think part of this flare-up is due to the fact that I now no longer have time to heal, because I work a full time job and am always on the go. So having a few days off should in theory help me... but it just seems to be getting worse. The heat is not helping and I'm just a poor tired mess.

Edit: It turned out to be a washing detergent allergy!

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In other news. The last time I went to see the dermatologist, back in May, she told me that they had forgotten to contact me 1.5 years ago to tell me that I was severely deficient in Vitamin D. I can't even. Sounds about right though...

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On a slightly more positive note; another thing that happened that I should really have blogged about sooner was that a fellow from the BBC contacted me in regards to making a radio documentary about eczema sufferers and what we really have to go through etc. I was invited to the studio in York and nervously gave my view point. There was a lot I didn't manage to say as I tend to burble when put on the spot and probably also a lot I didn't put across properly... but if you fancy a listen it is airing on bank holiday Monday (29/08/16) at 09:00 on http://www.bbc.co.uk/radiosheffield and later on at 18:00 on http://www.bbc.co.uk/radioleeds.

Alternatively you can catch it via this link after 10:00am Monday morning and it will be available for 30 days.

Hope everyone else is well!

x

23 comments :

  1. Oh Jenny I'm so sorry to hear this. You just can't catch a break :(
    It's easy for me to say this, but I don't think you should go back on steroids, as that will undo all the hard work and hell of the past three years, and you've come so far in that time. The last thing you need is to go back to square one again!
    Maybe it's because as you've said you haven't been able to relax in order to heal that it hasn't cleared up yet? How long have you been signed off so far/how much longer do you have to go?
    Is it Urticaria? Or an infection?

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    1. Hi Anon, thanks for your comment <3

      Today is only my 2nd day off work and I haven't actually been signed off so I guess it's just for as long as I need to. I was hoping to be back in for Sunday but it just isn't improving. I have no idea what it is. It's bumpy and rashy and not really typical of how my 'eczema' appears. I'm going to ring the derm nurse tomorrow and see if there's any chance we can up my dose of Ciclosporin in case it could be that. I'm just at a loss.

      :(

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    2. That might help. Do you ever have Dead Sea Baths? I've been reading up on those and I'm considering them. They might be helpful for you!
      Are you taking anything else at the moment? It might be an allergic reaction to that, or maybe to something you're around at work, cleaning product, dust etc.
      Maybe sit in a cold bath, and see if that helps? Especially if it's urticaria related!
      Anything but steroids, *shudders*

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    3. Also, maybe it's related to your lack of vit d? Especially if you're severely deficient!
      Sorry for the amount of posts!

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    4. Hi, that's OK I don't mind :)

      I've been doing baths with epsom salts, tea tree oil to keep infection at bay and yesterday I just dumped some oats in there (couldn't be bothered with the sock).

      I don't think it'll be the Ciclo - I've been taking it for 2yrs now but I've had to reduce my dosage because they want me off it soon. I'm also taking Vit D supplements now as well as a probiotic. I just don't know :(

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  2. Oh, hun. So sorry. My son still flares at the three year mark. Have you looked at Dermatitis Academy? If you don't think it's a flare, then maybe it's a new contact allergen? Please make sure to read Reba's story of getting a shot of steroid after having been clear before deciding to do the oral. Just know what you're potentially getting into. So many hugs!

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    1. I'd not heard of Dermatitis Academy but will deffo look into it, thank you :)

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  3. Hi Jenny,

    I've been following your blog on and off for the last year or so and so amazed at your honesty, I think your frankness about eczema is incredible and brave. Don't forget that.

    Like you, I've been through the it all eg the hand bubbly eczema, eczema infections from cold sores, itchy scalp, ozzing and had it since I was about 8, I'm 29 now. Been hospitalised, had the wet wraps, homeopathy, I even moved to China to live for a year to heal when I was 13 which did help. I had Chinese Medince soups and herbal baths and for me, the sun helps so I've had light therapy too but by the sounds of things, sun might be a trigger for you.
    At the moment, my skin is under control (first time in 7 years) and I think partly it's to do with the sun but also mostly to do with my stress levels being a lot lower due to not working as a lecturer.

    For me stress comes through the skin immediately, it's like my skin is communicating to me to slow down to listen to myself. I really noticed this from this year as my workload has changed, my skin is more manageable, l have a bit of a Type A personality (conscientious, working etc) and I think this tendency can stress my skin out. I find it hard to relax in general but also having eczema is stressful, it's a vicious cycle. I have found acupuncture to be really amazing in calming my body and during the worse of my eczema, it helped me to switch off and totally relax, during the worse of my skin I would have acupuncture and be so relaxed from the treatment i would sleep for 2 hrs afterwards, my body was tired of being tired, not sleeping and itchy blah.

    Of course it doesn't 'cure' it but just coming back into a more relaxed state in myself really helped. Also I have found that reiki has been helpful in unblocking emotional energy that has been buzzing around my body in a nervous way. Reiki has also been very soothing and grounding for me especially as eczema is so frustrating and relentless. Because of the nature of the scratching, sometimes I felt like I grew to dislike myself but things like reiki and acupuncture has helped me emotionally understand my skin. Alternative therapies like these might seem a bit left field but they have really helped me to understand my skin from an emotional perspective and the mind and body and skin connection. Some acupuncture or reiki maybe something to think about in terms of giving a little extra support for the mind and body. I hope things get better for you, you are strong, you can do it! :) and amazing work on the bbc, inspirational. Keep up the faith!
    D x

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  4. Hi Jenny, how's things going? Has the rash cleared up yet?

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  5. Hi Jenny. I hope things are going a bit better for you of late. I have been following your blog for a while now and think you're doing a great thing with your writing. I haven't got the guts to be so honest and revealing about my eczema so I think what you are doing is really brave. I just wanted to see if you had heard of an eczema doctor called Dr. Aron? If not, check him out, you can join this Facebook group, https://www.facebook.com/groups/draron/ . I was a little sceptical at first but after deliberating for a few months I finally signed up and the cream he has given me is working wonders. Combined with some dietary changes, mainly a low histamine diet, I have been able to get my eczema under control. It used to be all over my face, neck, arms, hands and behind my knees. Anyway, if you haven't checked him out it might be worth just having a look and see what you think about it. It's a bit expensive but I've heard of him waiving the treatment cost for some cases. Hope you feel a bit better soon, Jimmy.

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  6. Hi, I'm 58 and had eczema on and off all of my life.I've been on Cyclosporine for 6 months (two a day) but the dermatologists have now taken me off them, one week later the Eczema is flaring up again. I have an appointment with them next month when I'm sure they will want me to try Methotrexate, but all of the reports on side-effects terrify me.

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    1. I've had eczema for 10 years and tried everything. But I finally found the cure. I am light skinned red hair blue eyes and live in North Virginia with numerous good dermatologists.But the research I've done from sources worldwide says THIS IS NOT A SKIN CONDITION. It's an intestines issue.Dont believe me?Try this for 7-10 days. Drink every morning first thing 2 tablespoons of Bragg's Apple Cider Vinegar with 6-8 Oz's water. Your skin will thank you. If you get red blotches in spots it will pass.

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  7. Foderma eczema serum is really great. I saw vast improvement with eczema within a few days of usage. It is truly a cream and not greasy, a pleasure to use not only for those with eczema but with rough and red skin as well. Also, it's a great alternative to steroid cream some of which have side effects more concerning than the skin problem one is trying to cure. Also, only a small amount of this product is required and it is a large indeed, making this an exceedingly good value.

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  8. I'm not sure if you still read this blog but from looking at your photos it seems (like me) you're having an allergic reaction to moisturisers. If I use ANY of them, my skin turns red and itches, it starts to swell and turn yellow and then I end up in hospital. My advice is to allow your skin to be dry and ditch the moistuisers. Yes your skin will be dry (at first) but it won't be red, inflamed and weeping. And even if it does weep / sweat on a night, it won't be anywhere as near as bad, after a few weeks. Your skin will be dry and cut at first but it will start to heal by itself, with just water. One shower a day with lukewarm water, or hot if you need to cortorise the wounds early on. You can then reduce to lukewarm later on.

    What do you have to lose? You can't keep using antiobiotics / steroids because they're playing havoc with your system. The antibiotics will kill off your GOOD and bad bacteria. If your skin is in a bad way it no doubt means your gut is in bad shape, as your skin is the last place to show. I speak from experience.

    Change your diet. My advice is to get some gluten free oats and eat them every morning for weeks / months. Oats change bad bacteria into good bacteria over time. Second: take a vitamin D suppliment. Ever noticed how your skin heals in the sun? I take 1000 iu every day with one tablet of these K2. https://www.amazon.co.uk/Veganicity-Vitamin-Circulation-Health-Supplement/dp/B008FXOS4I/ref=sr_1_9_s_it?s=drugstore&ie=UTF8&qid=1481062494&sr=1-9&keywords=vitamin+k2 You must take K2 if you take vitamin D. According to the Vitamin D Council you can safetly take upto 10,000 iu a day of Vitamin D, so 1,000 iu is nothing.

    Finally, if like me you suffer from anxiety this book will help you recover. https://www.amazon.co.uk/Dare-Anxiety-Stop-Panic-Attacks/dp/0956596258/ref=sr_1_1?ie=UTF8&qid=1481063040&sr=8-1&keywords=anxiety+dare

    Eat fruit (in moderation, to limit sugar, sugar in the blood can cause itching), vegetables (including vegetable smoothies daily) and nuts. remove anything from your diet that you can't pronouce, in the ingredients. Eat natural food until you recover. Red meat is inflammatory, so eat turkey and chicken instead. Tumeric and ginger are anti-inflammatory. Fennell is also great for you. More info here: https://primephysiquenutrition.com/how-i-overcame-severe-eczema-when-doctors-said-there-was-no-cure/

    By changing your diet, ditching the tablets and allowing your skin to be dry it will eventually heal. I haven't used anything on my body for years and it is like normal skin now, even after daily exposure to hot water. The skin on my face is still dry (worse in winter) but it isn't that dry at all in summer. I'm two years into TSW. My skin has also started to sweat alot (on a night) which Dr Fukaya says is a final stage of TSW. I'm hoping he's right. Good luck.



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  9. There was a study out about how putting a small amount of bleach in the bathwater can help keep eczema at bay.

    Baby Lotion For Eczema

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  10. My sister recommends foderma serum after using it on her son's eczema. She really likes it. This product has worked great for my hubby's eczema. He gets it on his face so it is hard to treat but this really helps clear it up.Great product.

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  11. I have eczema and have used many different products both prescription and over the counter. I have to say foderma serum is awsome. It calms the burning immediately and adds so much needed moisture.

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  12. Hi Jenny.
    How are you doing? How's your skin these days?

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  13. My daughter has severe eczema and foderma serum is our product of choice. It is the best thing we have come across so far. Even with just switching to foderma intensive repair, we noticed a flare up.

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  14. I suffer with skin problems and have for many years. I absolutely love using Aloe Vera products. I feel my skin hydrating once I’ve applied it and never feel like I’m damaging myself with chemicals. I use products from Forever Living: https://www.facebook.com/foreverlivingproductsuk/?fref=ts

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  15. Hello Jenny,

    I have gotten great relief from the itch with a gel called Mirvaso. It is for facial redness, but my doctor prescribed it for the side effect of relieving itch. It helps me stop scratching.

    Hope it can help you.

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  16. Foderma serum is best product I've ever used for soothing, healing and controlling the itchiness that comes with eczema. No greasy feeling residue and absorbs pretty quickly. Highly recommend!

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  17. I had been sufffering from eczema since childhood. Finally I found this great blog which I followed and now my eczema has almost gone completely. -> http://howtocureeczemaforever.blogspot.in

    ReplyDelete