Tuesday, 28 May 2013

Topical Steroid Withdrawal

So I haven't applied any steroid creams since Saturday 18th when I was in a bad way with the hot water not coming on when I was in my state of desperation. Eventually after I'd had my bath I liberally applied Hydrocortisone ointment as if my life depended on it. It hasn't  been an intentional thing as such to cease usage, but there is the niggling in the back of my mind that they are likely to be the source of all evil. 

However, since this time my skin hasn't really improved at all. Like I mentioned in my post prior to the Bake Sale, my skin has been going through all sorts, never following the usual pattern of red, weep then flake. Instead it has been doing all these things either at the same time or in whatever random order it feels like doing it. As you can imagine, this has resulted in me whinging and feeling like crap and the need to nap and generally relax. 

I also think I have a viral infection on my torso. Whether it is from the antibiotics I took, I have no idea but it's getting on my nerves as every part of me seems to have something wrong with the skin. My arms and back are dry and flaking, with deep gouges and scratches from attacking myself in my sleep; my face and ears are a mixture of weeping, red, dry and flaking skin, and in fact felt as though I had been stabbed in the face hundreds of times when I woke up yesterday morning... The backs of my knees are also awful but I'm putting it down to being overheated, and my thighs are also pretty bad right now. 

excuse my flabby tummy. I appear to have put on a bit of podge ;)

Backs of legs

Front of thighs

I'm fed up of the sight of my skin flakes every where and the constant hoovering. It just brings it all back to the old days. I feel bad for Shane that I'm having to depend so heavily on him just so that I can function and get through the day. I can see how much stress I add to his life and I just wish he didn't have to carry out this additional burden, given how much else he has to attain to. 

I'm seeing my derm on Friday so hopefully he decided to do some background reading... I am thinking about possibly giving Ciclosporin another go whilst I go steroid-free, though I am wary of it working for me as it didn't the second time round. We'll see.

Hope everyone else is doing good?x

Saturday, 25 May 2013

All The Cake

Wow. What a fantastic day today has been!

The sun has been shining, putting us all in a lovely mood which has been absolutely brilliant for the Bake Sale we held today to help promote Shane's 1000km Challenge in order to raise money for the National Eczema Society. We made a whopping £152.72 which couldn't have been achieved without the help of others donating their baked goods - so a big thank you to everyone who has taken part - we are incredibly grateful for your support!

The layout of this table changed a lot over the 6hrs we were there, including further cake donations!

It was also lovely to see a turn out of other eczema sufferers and to have a chat about our conditions sharing our tales of both woe and hope. I'm just so pleased that people have taken an interest in our cause as eczema as a condition tends to go unrecognised in the wider scheme of charities, especially given its debilitating nature in a large number of individuals.

My friend pictured above, Hannah, who blogs over at The Retired Bridgeburner, came to stay overnight to help us man the bake sale. It's been lovely having her here and I am beyond grateful for her assistance and indeed putting up with me complaining about being extremely itchy and flaky ;) Come back soon, Hannah! She is a huge tea and cake fiend like us, so of course despite being surrounded by cakes for a bake sale we had to bake some for ourselves! We also had to have a trip to Bunty's Tea Room which was a pleasure as always. People who have never been to Lincoln should always go to Bunty's as it is a part of the city experience! 

Wednesday, 22 May 2013

An Eczema Update

My blog is in dire need of an overhaul. I don't much like how it looks but hopefully we can rectify this soon... I've also added the Google Followers widget which I use over on my other blog yet for some reason it completely slipped my mind to add it on here, so you can now follow me that way if you wish.

So yesterday I went to see my dermatologist, bringing with me an article from the ITSAN website. He seemed to be fairly open-minded about it though obviously in the short time I had to see him I couldn't exactly divulge the entire longs and shorts of what is to be expected through withdrawal and so on, and so I can only hope he uses the resources I gave him to do a bit of background research. I also gave him access to this blog, so if you're reading - hello!

In the mean time I've been given antibiotics to rid the infection/ inflammation and another stepped up course of Aciclovir as despite taking the medication, most irritatingly a cold sore has decided to crop up on my lip. Think I've caught it just in the nick of time though. He did suggest I cease all steroid usage now and I have a follow-up appointment next week but as I tried to explain to him in the first instance it will be hard to keep up with my job. I will seriously cut down on my use though and only stick to milder ones such as Hydrocortisone, if I do feel I need to use them. We'll see anyway.

I've not been sleeping well for the last few nights because I've been unable to sleep on my side due to both my ears overheating, resulting in weeping and just general discomfort. Not nice. My skin is also being super crazy generally. As most people find it goes through it's red, angry, rashy stage; does it's oozing etc. and then finally sheds. Right now my skin is doing all of that at once. I hate the oozing so much. It actually smells as though the skin is rotting. Grim.

Hope everyone is doing well, and I wish all those who are going through withdrawal right now the best of luck as I hope to be doing what you're doing some time soon in the hope of regaining a better quality of life.

Saturday, 18 May 2013

Sore, Red, Dry, Itchy and Oozy

In my last post a lady linked me to her video that she had created about her experiences with this "Red Skin Syndrome" that is brought on from Topical Steroid Withdrawal. I was quick to show some of my immediate friends and family as she explains it all so, so well and her story is extremely similar to mine. I also like her comical way of putting the video together. It made it that much more "real" and there's definitely no pussy-footing about (no pun intended Miss Kitty Fantastico!) she gets straight to the point.

So please take the time to watch this, it really is interesting!

In news of how I am today, well I'm not good really. I only woke up at 11:30 which is hugely late for me but the truth is I've been avoiding getting up because it just feels all too raw and painful today. It's all because of last night's antics and frustrations. I came home from work expecting to be able to have a nice relaxing bath and the hot water stopped being hot when I'd only filled a small amount of the tub so sitting there on the bathroom floor in a state of itchy frenzy, with no one to support me I had a bit of a break down. It  took about an extra 40 minutes or so until I could run my bath. 

It will sound beyond trivial to some that I wasn't able to bathe as and when I wanted to but it isn't because I want to, it's because I need to for the sake of my poor skin. If I don't pander to the needs of my skin as soon as I can life just doesn't feel worth living.

Tuesday, 14 May 2013

Is My Medication The Cause Of My Eczema?

Been doing more thinking about this "red skin syndrome" malarky to try to solve the mysteries of when did this happen, and more importantly, how did this happen?

I was talking on the phone to my Mum regarding when my eczema, asthma and allergies first started. She said my eczema started when I was a child, however she can never remember it being severe in any way, shape or form. It was mostly just sensitive, dry skin to which we stopped using bubble baths and switched to hypoallergenic products.

It was asthma that was most prevalent, often resulting in trips to hospital and taking oral steroids to help return my lungs to a more normalised state. I distinctly remember these times well. I would be at my Nana's house and she would dissolve the nasty little red tablets in some water in the "special medicine glass" to form the most vile pink fluid you will ever taste, which was always far too much for me to neck down, and would always proceed in me gagging. Memories to treasure, huh?

My allergies were also never really that bad. Although I did always have a snuffly nose and would produce more snot than is depicted as normal. Although I do distinctly remember picking up my friends' pet rabbit, and within seconds my eyes swelled shut and I was so itchy and sneezy and my asthma went mental. So never again did I pick up a rabbit. But I do remember going on trips to farms and picking up various animals and never having a problem. Same goes with cats. Misty was around before I was born. So I've always grown up with cats around me. In fact, my brother had gerbils too, to which I never reacted.

A face full of make-up, in my "Goth" attire, aged 15. Note the clear, pale skin :(

Fast forward a few years and I would often get small patches of eczema on my inner elbows, my upper lip and sometimes around my eyes. It was an annoyance, yes, but nothing that a bit of E45 and hydrocortisone couldn't help. I'm unsure as to whether my hormones played a part in this or not but I can't figure out what would have been the initial trigger.

Then we come to me aged 16 where I was faced with the awful situation of my Grandfather's funeral and meeting my biological Father for the first time in my life. I don't remember my skin being bad on the train journey down, though I do remember my asthma worsening as we changed trains on London Underground. I just remember the morning of the funeral the entirety of my face, neck, chest and arms were coated in a weeping, swollen rash which was so bloody itchy I couldn't stand it. E45 worsened it and from then on I've avoided it like the plague.

Now whether it was the stress of the situation that brought on the flare, my Grandad's extremely dusty home, the feather duvet's, the woolen carpet, or a combination of these things... I just don't know. It wasn't until the following day I believe, that I was admitted to hospital with an asthma attack. My skin had worsened so much and oozed and was burning and infected, covered in scabs that would just reopen and make me stick to the bed sheets.

It took around 6 months for my skin to return to normal after that, applying a zillion different steroid creams during this period. Then it returned to its "mild" form, not bothering me again for another 3 years. [Although it was during this "resting" period that I developed my heat urticaria. I came out in hives when on holiday in Spain and from then on whenever I got too hot would break out in hives.]

It was then in January of 2009 that it all kicked off again (for reasons I can't quite put my finger on...) and so I returned to using steroids, but this time more potent steroids. I was given oral steroids and antibiotics to prevent my reoccurring infected eczema. Unlike before where it was on my face, neck, chest and arms, it spread down my torso and then down my legs leaving no part of me unscathed.

I assume in the first instance of having eczema that it was down to a severe allergic reaction as why else would it have appeared on my most visible parts? I can only think that it was due to an airborne allergen... possibly the sheer levels of dust? The second time however, I really have no clue.

I have been in the same state since 2009 with only small breaks of respite. As I've mentioned before I've undergone all sorts of treatments, had allergy patch and IgE testing and nothing has really come to light properly, other than my obvious dust and animal allergies.

So could my eczema be a by-product of the steroids? Perhaps it was the steroids that caused me to get eczema to start with if I took them frequently for my asthma troubles. I just don't know and I need some answers soon.

Does anyone else who has suffered from Red Skin Syndrome have severe allergies? I need to help make a distinction I think.

Forever pondering...

Friday, 10 May 2013

Red Skin Syndrome

So today I'm in a state of turmoil and curiosity has finally gotten the better of me. I keep getting hounded by people telling me I have this "red skin syndrome" which to those not in the know, is essentially what happens when you've used steroids for years; your skin becomes addicted and completely dependent on the medication.

The typical symptoms of this are:

  1. Red burning skin, hot to the touch, that spreads over the entire body, despite it originating in smaller places with extreme itchiness that cannot be satiated. 
  2. Skin that weeps and oozes.
  3. Eczema type rashes that spread over the skins surface.
  4. Hives/ Urticaria.
  5. Difficulty regulating body temperature with freezing hands and feet and you may often suffer all-over body chills.
  6. Extremely dry skin that sheds like crazy and needs to be vacuumed daily.
  7. The skin is so sensitive that you can become allergic to basically everything.

Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.

The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.

I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.

My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.

So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.

At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?

You can read more about it here.

Images of Kelly Palace, before and after, pinched from the ITSAN website.

Tuesday, 7 May 2013

Summer Days: Eczema (Warning: Deep Post)

So the sun is shining, the last couple of days have been serene and beautiful... but I'm not allowed to enjoy it... according to my skin anyway!

I envy those people who's eczema gets better in the sun shine weather. Mine just gets worse and worse. Everything about the sunny weather just destroys me. The heat is too much that I get itchy and irritable and come out in hives; the abundance of UV rays means high factor sun cream which dries out my poor skin; not to mention the emergence of insects that act as irritants! It's bad enough to near-constantly feel as though I have millions of tiny insects crawling all over my body, but to have it actually happen makes that sensation all the worse!

I find myself tearing my poor skin to shreds because I just cannot get comfortable. Summer is literally hell on earth for me but I wish it wasn't. I want nothing more than to enjoy soaking some of the sun up through my Vitamin D deficient skin but those times are just distant memories, what with now taking immunosuppressants that make the risks of getting the likes of skin cancer that much greater.

I yearn for my youth for when I could paddle in the sea on a summers day, without feeling the sheer agony of sea salt driving itself into fresh wounds; for reading a good book in the sun trap that is the garden; for going on sun lit adventures; and most earnestly to just feel god damn comfortable in my own sodding skin.

I miss being normal.

I think that's what makes it worse for me. I've always had eczema but I've never suffered from it as much as I suffer now. It was always manageable and easy to rectify. Life gave me a taste of what it is to live but I have so many regrets that I've taken the life I had prior to this for granted. I'll never get back these past few years of my "prime" where I could have really made something for myself. We are only on this earth for a blink of an eye after all.

In short: you can't miss what you've never had, but if you were lucky enough to experience life beforehand make the bloody most of it. Life is too short.

Thursday, 2 May 2013

Dust & Cat Allergies

So the inevitable has happened - my skin has flared and left me in a bad way. Ugh.

As I mentioned in my previous post, I was going to visit my family up north because I haven't seen them for a while and I needed to sort through my old bedroom. Unfortunately hotel prices were ridiculously high for when I had planned to visit so I stayed with my Uncle who lives in a pet free house. My Mum helped to clean and tidy it before my stay to prevent me from reacting to any potential dust.

For her own home, she attempted to make it a cat-free zone for the duration of my stay; locking the cats in the utility room with the freedom to go outside. I felt so cruel for allowing her to do this as they are rescue cats and became really upset and indeed vocal that they were being abandoned. It was heartbreaking. Cats are my favourite animals after all and I hate the idea of allowing them to be upset, but at the end of the day my health is more important.

Benny boy on the window sill - I hadn't realised I'd got such a hilarious photo of him LOL

My Mum hoovered the entire house, paying close attention to textile areas, such as removing the blinds and placing an abundance of carrier bags and whatever plastic she could find over the top of the bed to stop me reacting.

I didn't enter her house until the second day of my visit to withhold from a potential reaction occurring; loaded up on antihistamines. We even took further precautions by purchasing dust masks and cotton gloves to enable me to look through my belongings without touching or breathing in allergens that would cause an asthma attack or flare of the skin. I looked ridiculous and felt ridiculous that I needed to go to such extremes but they did help to an extent. It wasn't until after an hour of being in the room that I bent down to look through a wardrobe that my poor eyes that had been unprotected had a reaction and all of a sudden I had to be out of there. My eyelids were weeping. 

Me donning mask and gloves

Me when I got home. Annoyingly my phone has made it look less severe than it was but I must stress that my face was clear and pale the day before.

The positives that can be brought to light are that I was still able to look through my things albeit for a short period of time whilst wearing the dust mask and gloves as they minimised my exposure. I should also be thankful that I didn't need to use the EpiPen or need to be rushed to hospital due to the lengths my Mum had gone to make the house more "Jenny Friendly". My asthma did flare whilst I was there but I only needed to take my inhaler a minimal amount of times compared to previous visits where I would take it countless times (naughty, naughty!).

Fortunately I had a text from a colleague last night asking if I could start work 3 hours later today which I am more than thankful for as I am in desperate need of the extra recovery time. A blessing in disguise really!

Hope everyone else's eczema/ allergies are behaving today :)