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!

Thursday, 3 July 2014

13.5 Month Photos

Please ignore the toilet and general bathroom stuff in the background. I can't be bothered to retake the photos.

Face with a little bit of Purepotions on. Yay for eyebrows though.

My lovely Deirdre Barlow neck :(


Right hand side really seems to be going at it in terms of flaring.

Right leg

Left leg

Left thigh

Poor wrinkly tummy

Mass shedding on left arm (right is the same but too hard to photograph!)

Hard to see but wrists have a bit of a sleeve thing going on

Right arm - you can just about make out the open sores

Armpit. Infection has disappeared thankfully but it's dry and slightly red.

Back of knees are appalling and I'm finding it hard to walk.

Wednesday, 2 July 2014

At a loss

Hey guys, so I thought I would update you on how I'm doing now. Well let's just say I'm not good.

After I was discharged from the hospital I asked about the antibiotics for my skin infection but was told I didn't have one and that it was "just eczema". I couldn't be bothered to argue so just thought oh well... let's see how I get on without them.

I was doing pretty good, getting over the allergic reaction and then this Sunday just passed I was so ill. I kept falling asleep as I was completely devoid of energy, I couldn't do anything for myself. My skin was back to being a full body warm, weepy, smelly mess and I could tell infection was present again. I didn't go to the doctor's until yesterday morning where I was issued with an antibiotic, coincidentally the same one I was given whilst in hospital, so I hope my body doesn't become immune to it. Recently there have been news stories about how our antibiotics will no longer work against infections soon because our bodies are just becoming too used to them, and this worries me a lot because of the amount of infections I do contract, and the amount of times I've been told to stop taking them halfway through a course.

For some reason I also asked for Dermol 500 because I know it has antiseptic properties and is something I've used frequently in the past. Oh what an idiot I am. I applied it last night and it was as if my skin was trying to expel it. I can't really explain it but half an hour or so after applying it, the surface of my skin became slick again with the product and it was unbelievably itchy! Also this is even more bizarre but I could taste it in my mouth! I knew my body had developed sensitivities due to TSW but I can't believe how it has reacted as of late... first with the penicillin based antibiotics and now with other creams. I know my body has become intolerant to an extent of white soft paraffin too, and also doesn't seem to like many of the natural products I put on either. It seems to be pot luck with them. I've been trying out Shaloah Skincare Calendula & Borage sooth & repair cream which sometimes works, but not always as well as some products from Salcura which I also don't seem to have had great success with but I may persevere...

Moisturiser withdrawal isn't an option for me right at this moment because of how much my skin is shedding and how thickened it has become from over-scratching. I feel like my skin needs to be fully quenched and hydrated but I'm struggling to find a way to do that.

I'm just so annoyed that my skin has been allowed to get to this state and I truly despise myself for not waking up sooner to the perils of medications.

I feel at a loss right now and don't know how much strength I have left to fight this. I just feel the need to complain and get my whinge out there so sorry if this post reads like one big ramble.

I also can't be bothered with arguments as to whether this is a "year TSW flare" or skin infection as I now know my body well enough to distinguish what is going on.

I hope everyone else is having a better time with their skin.