Monday, 14 July 2014

Not Getting Any Better

So things seem to be getting worse and worse. This past weekend was good though. I decided that even though I was probably in no fit state, I still wanted to go on a coach trip with my Mum to Chester/ Liverpool which meant getting up at 4:30am to drive up north to hers, to catch the coach for 9am, to go all the way back past Leeds again to get to Chester. Joy lol. But we did have a jolly good time despite me not being in my best shape and feeling sorry for myself a bit. It definitely beats staying at home moping around alone anyway!

So yes, Mum came back home with me last night as although I wasn't great I was still better than I had anticipated so we had decided that we would have a shopping trip in Leeds. I also had a follow up dermatology appointment to attend this morning from my time in hospital the other week. However by the time we got home, there had been some road closures in the city centre and I got SO lost (thanks sat nav!) which resulted in me being completely stressed out and a little worse for wear and didn't think it had actually been a great idea to invite my poor mum back with me when I felt so hideously ill. But we persisted all the same.

So this morning: after getting completely lost and driving round and round the infamous ring roads of Leeds, I finally arrived, 40 minutes after my appointment slot. It turns out there was a long wait anyway so it probably worked out in my favour that I had been so late as I didn't need to wait too long to be seen.

The dermatologist was the same man who had seen me at the hospital. He examined me and said I would need a course of oral steroids and topical steroids but obviously I wasn't having any of that! After we'd talked about my extensive and complicated history for a while I could tell he was only really interested in following normal protocol and refused to believe my topical steroid dependency. I told him about how my allergies had diminished when I stopped using them and he said that it was just coincidence. I think not.There was no changing his mind though. He was adamant that this was "just the nature of the eczema beast" and that I would always be fighting it. Eye roll.

I asked about going back onto Ciclosporin even though I'm now afraid of using any immunos because of the high risk associated with me contracting eczema herpeticum. He said he would need to test my bloods but he wanted me to go down the steroid route first. I declined and started to get into a bit of a tizz, in the end it resulted in me bursting into tears. He asked if I'd like to think on it for a while, so I was whisked off to another room to speak it through with my mum and one of the nurses.

I think we must have been sat there for about an hour just going round and round in circles. The nurse had to leave the room at one point and when she came back she said she'd spoken to another of the nurses who suggested it'd be a good idea to admit me to hospital so they could monitor me to ensure a herpeticum attack didn't occur. Although I think it would probably have been the best idea, I don't want to use steroid creams any more, neither do I want to risk putting my job in jeopardy by having any more time off. If I was allowed to be admitted with just the use of moisturisers I would probably have said yes, but as it is... I just can't.

After much deliberation I went back to the dermatologist and we came to a compromise and agreed that I would go back on the Ciclosporin, providing my bloods and chest X-ray came back OK. I would also be taking a maintenance dose of Aciclovir to prevent the herpeticum from returning. This seemed to satisfy him and steroids weren't pushed on me again thankfully. The only thing is I have to wait 3 weeks to be issued with the Ciclosporin so we'll see how I get on in the mean time.

I am in a really bad place again and definitely need some form of intervention right now just to get through this as I need to start getting my life back on track again. Stress is definitely the trigger for my skin and moving to Leeds certainly hasn't helped me in the slightest. I just hope I see some small improvements soon with my dead sea salts. Also I was wondering where people are getting their colloidal silver from? I've heard that sometimes a silver substance can cause the skin to change a bluey/silver colour and is posed under the name of colloidal silver and I'd hate to buy the wrong thing. You never know who is reputable these days!

Any ways, I hope everyone else is well!

14 comments :

  1. Hi Jenny just started my self to get off it on my second month its very embarrassing as its on my face. You should use allicinmax for infection i've been using it since i started to make sure i didnt get any infections

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  2. Please please please don't use colloidal silver, It's really dangerous!
    Read her story http://rosemaryjacobs.com/rose2.html

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  3. I used to have very bad eczema all over and used all sorts of creams and chemicals to no avail - I decided to change my diet to see if it would help. I went on the Paleo diet - you have to stick with it for a while but it's helped so much more than any cream. I found one post about your diet and asking for recipes. So I thought I would share. It works for some people but not others. Do a search on google about it. Loads of stuff out there.

    I swear by it and its changed my life.

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  4. Try turmeric - a nature product. It really worked wonders for my son. Research has shown that turmeric's 'curcumin' has anti-inflammatory effects to be comparable to the potent drugs Hydrocortisone and Phenylbutazone; as well as over-the-counter anti-inflammatory agents such as Motrin. Turmeric has magnificent wound healing activity. Turmeric not only has antioxidant, antiviral, antibacterial, anti-inflammatory and antiseptic properties, but also acts as a natural antihistamine. Blogged about it in the hope that it helps others like it did him www.atopicdermatitisnaturecure.blogspot.com

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  5. THERE IS A CURE FOR ECZEMA IF YOU FOLLOW THESE STEPS.

    First off GP's and Dermatologist hospitals are USELESS AND they know NOTHING ABOUT ECZEMA.

    Do NOT USE the steroid creams they provide. IT ONLY WEAKENS THE SKIN AND THE SKINS BECOMES ADDICTED.

    THE CURE FOR ECZEMA IS TO IDENTIFY THE FOODS AND ENVIRONMENTAL ALLERGENS THAT AFFECT YOU. ONCE THEY ARE ELIMINATED FROM YOUR LIFESTYLE, THERE IS ONLY A 100% CHANCE YOU WILL HEAL.

    THE HEALING PROCESS DEPENDS ON THE SEVERITY OF THE DAMAGED SKIN, BUT, YOU WILL EVENTUALLY HEAL.

    IN MY CASE THE FOOD ALLERGY WAS SULPHITES - http://www.allergyuk.org/sulphites-and-airway-symptoms/sulphites-and-airway-symptoms

    PLEASE REMOVE SULPHITES FROM YOU DIET AND WITHIN A FEW WEEKS REPLY TO THIS COMMENT AND TELL ME THE RESULTS. I ALSO STOPPED EATING EGG AND MILK (DAIRY)

    BUT SULPHITES IS THE CULPRIT.

    ONCE YOU HAVE IDENTIFIED THE ALLERGEN. YOU WILL NEED TO FIND A MOISTURIZER THAT SUITS YOU.

    IN MY CASE IT IS THE - Physiogel A.I. Lotion - http://www.cocooncenter.co.uk/physiogel-a-i-lotion-200ml/8566.html - NOT SOLD IN THE UK.

    I FIND LOTIONS TO BE MORE COMFORTABLE THEN CREAMS, BUT, FIND THE BEST MOISTURIZER THAT WORKS FOR YOU.

    THE COMBINATION OF ELIMINATING YOUR ALLERGEN AND MOISTURIZING WILL HELP YOUR BODY NATURALLY HEAL ITSELF, IT IS INEVITABLE.

    P.S. Do not use or pay for an allergy test to find your allergen they are pointless in my opinion. The best way to identify you food allergen is by the process of elimination and keeping a food diary.

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  6. Hope things are improving. Best wishes x

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  7. Read this & listen ! TSW is a huge pile is steaming horseshite... Rappaport is from Beverly Hills FFS

    ELECON & potent steroids do rebound thus u need to taper down to Eumovate & Hydrochortisone with strict moisturisation routines & as much SUNLIGHT as possible without getting burned.

    Notice how everyone who has healed has been on holiday abroad of lives in Australia...

    I've been on cyclo & Azophioprine at the same time & they were both useless because the skin was so damaged beyond repair I abstained from steroids for 3 months to get worse every day... & look like you no offence but you need a fucking reality check its not diet it's not steroids it's compromised skin barrier I use Eumovate once a week now as a maintenance & moisturize 3 times a day & lead a normal life. I refuse to show any photos so that ITSAN won't pervert the story

    But get a grip get admired to hospital with paraphin wraps & Elocon for 2 weeks get UVB if you can & taper down to eumovate.
    You do or want to be taking immunos there's a reason the doctor wants you on steroids

    This is a mental battle as much as it is physical thus the poor choices we have both made listening to this shit. you're not going to get better without steroids & I fucking hate them but your skin can't come back from where it is without them =(

    Anyone who disagrees enjoy your epsom salt baths which destroy the skins barrier even further & let this testimony eat at you because the Drs are right & rappaport who probably isn't even anywhere near as qualified as an NHS Dr is wrong... The man gives Botox FFS !

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  8. I may take you more seriously if you weren't posting as anonymous. ....what am I saying no I wouldnt as im 5 months into tsw n my skin is no longer red flaky or burning and I dont live in Australia I live in the uk! So just because you couldn't go thru tsw fully enough to see the benefits dont be nasty about other people trying it as there are plenty of success stories from people and not on itsan but on facebook group people I have been talking to for months and watching there progress and sharing my own so stop with the negativity!

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  9. Obviously Mr Anonymous wasnt as strong as Jenny or the rest if us, and when the going got tough, the tough ran to steroids. Would you kindly not leave such negative and incorrectly researched comments, all they do is make us laugh at your expense.

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  10. Oh dear anonymous why the anger?

    Firstly my son is totally better despite living in dreary old England, so that puts your well researched and thorough study to bed. Secondly we had the support of a wonderful ( and extremely well educated ) consultant, who helped us get my son better.

    I suggest you stick to your elecon then when you are ready perhaps research the qualifications of those you are so quick to dismiss based on where they work ( such inverse snobbery I feel ) and the you may like to look at some of the papers the current chair of the nea has contributed to and then please do come back and re affirm your 'horseshit' theory, with some more evidence rather than a ranty tantrum.

    Amazing how well you can spell fucking, but paraffin seems to stump you. Kind of sums up your argument I feel.

    Best of luck to you, with your kind of mindset I rather feel you may need it.

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  11. when referring to steroids you say "i fucking hate them" yet you still use them? there are many many veterans who live in england. the sun helps healing yes but the only thing that heals is TIME, anon, and it looks like you just didn't give TSW enough of it. the thing is, the people i have met in the tsw community are the sweetest most genuine and helpful people i've ever met and i can say with confidence that we'll all welcome you with open arms when the drugs no longer work for you and you need a support network. good luck.

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  12. Dear Anon,

    The NHS doctors that you choose not to question, are destroying the health of 100,000s of people in this country by relying on outdated measurements to diagnose and treat thyroid conditions. So your rather abrasive and sanctimonious lecture on the merits of their prescribed use of steroids, really doesn't wash with me. My faith in the NHS has been seriously rocked when it comes to their methods in 'treating' certain conditions. We don't have functional doctors, so steroids are the easy way to push us out of the door. Oh and really, Eumovate once and week and moisturising? Good grief? Don't you think we tried it ALL!!!! ps Bleach, Epsom, Himalayan and Deep Sea Salts, all the way for me!

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  13. Hi Jenny,

    You are so brave and very inspirational to anyone who suffers with any form of skin condition to put yourself out there for everyone to see. I hope you get over your condition very soon or at the very least find a way to manage with your skin much easier. As I myself know how painful physically and emotionally severe skin conditions can be.

    I was just wondering if you had tried Colladeen Visage supplements? They're promoted mainly for the signs of aging, but I can't vouch for that. What I did notice was that it has made my skin much softer, smoother and easier to manage. I have atopic eczema, I'm not saying that they will definitely work but they might be worth the expense to see how your body reacts to them. They are herbal supplements, I personally would not do without them now.

    Best wishes,

    Jenny
    From Lancashire
    26 years old

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  14. Hey sweetie,

    I'm just becoming acquainted with your blog tonight, and I am so feeling your frustration! I have been there; in the hospital, taking steroid creams. I still do have the occasional topical steroid cream. I've never heard of the addiction before coming across your blog. I don't have the time to read through all of your posts, but I see that you have tried many a different method. I'm wondering if you've tried a couple of things that help me from time to time? Evening primrose oil (internal use- triple dose), food elimination (I know I've seen that you've tried, but it is very difficult since wheat, dairy, corn, and eggs tend to be in everything- but are major culprits as I've found out from my naturopathic doctor), an alkaline diet, and adrenal gland fatigue support?

    Mine is on my hands mostly but spreads when bad, and is a complete bother to my life. It keeps me from working in my first career as a hairstylist (10 years ago I tried because I just loved doing it. Suffered for a year, and am still paying those student loans now), I cannot work in the hospitality industry if I wanted to because of all the cleaning, nor do I feel confident to even find a job now. I find eczema can be qued by the amount of stress I'm under as well.

    I find when I'm on a really great food plan (where my toddler, and fiancee don't get in my way of "planning" it all out), exercising lightly (yoga, walking, or body weight exercises), meditating and drinking lots of water helps me. Its just an incredibly frustrating balance when life gets in the way- and it always does. I hope your journey brings you to clear skin. Lots of love.

    I hope you come visit me, I'll be talking more on a healthy regime for your body in the near future. But I do talk a lot about healthy diet, and lifestyle.

    Lyssa
    Optimismproposal.blogspot.ca

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