Back on the Ciclosporin and life is good :)
Will do a proper update after the weekend!
Thursday, 14 August 2014
Wednesday, 6 August 2014
Month 14.5 TSW
I've been very reluctant to post on here recently. I'm fed up of whining really but figured I should do an update on what's been happening.
Well I'm now 14.5 months into my withdrawal and I'm still a complete mess. It turns out I did have a staph infection so was given antibiotics but now that they've finished I'm still struggling. I haven't been able to get dressed in the past 3 weeks now bar a couple of times where I've managed to force myself into stuff. It's insane. I've also been off work on the sick for all this time too. I don't return until next Tuesday but I'm scared that I still might not be ready!
I have a lot of important family stuff coming up over these next two weekends and my skin couldn't have picked a worse time to degenerate. Luckily I see the dermatologist tomorrow with the view of putting me on Ciclosporin for a bit, mainly as a compromise because I declined the steroids. I'm terrified of contracting eczema herpeticum whilst taking it, especially with these said events I need to attend but I guess we'll cross that bridge when we come to it. I'm hopeful the Ciclosporin will at least clear my skin so I have a cleaner slate to deal with and will hopefully help my skin to heal a bit better.
I've also drastically changed my diet. For the past 3 weeks I've been following a high carb, low fat raw vegan diet. I've seen a lot of helpful information regarding this diet where people have managed to eradicate chronic illness, from eczema to the likes of cancer. I haven't noticed much of a difference yet, other than weight loss... but I'm surprised at how well I'm managing to keep it up. I don't really have any cravings for bad foods so I guess that's cool. I suppose my body is so toxic inside that it will take time to see any visual differences regarding my skin but I hope that this change will at least help to boost my poor immune system.
Thanks for all your messages, be it comments or emails and I apologise for not responding to everything, though I do read everything. I'm just lacking motivation and feel as though I've slowed life right down just to get by, but I know everything will need to resume to normal speed soon, as I just don't have time to be ill.
Ok, I've rambled on enough. I hope everyone is well and I'm sorry there are no photos. My camera battery has died and I can't find the cable to recharge it. Oh well.
Well I'm now 14.5 months into my withdrawal and I'm still a complete mess. It turns out I did have a staph infection so was given antibiotics but now that they've finished I'm still struggling. I haven't been able to get dressed in the past 3 weeks now bar a couple of times where I've managed to force myself into stuff. It's insane. I've also been off work on the sick for all this time too. I don't return until next Tuesday but I'm scared that I still might not be ready!
I have a lot of important family stuff coming up over these next two weekends and my skin couldn't have picked a worse time to degenerate. Luckily I see the dermatologist tomorrow with the view of putting me on Ciclosporin for a bit, mainly as a compromise because I declined the steroids. I'm terrified of contracting eczema herpeticum whilst taking it, especially with these said events I need to attend but I guess we'll cross that bridge when we come to it. I'm hopeful the Ciclosporin will at least clear my skin so I have a cleaner slate to deal with and will hopefully help my skin to heal a bit better.
I've also drastically changed my diet. For the past 3 weeks I've been following a high carb, low fat raw vegan diet. I've seen a lot of helpful information regarding this diet where people have managed to eradicate chronic illness, from eczema to the likes of cancer. I haven't noticed much of a difference yet, other than weight loss... but I'm surprised at how well I'm managing to keep it up. I don't really have any cravings for bad foods so I guess that's cool. I suppose my body is so toxic inside that it will take time to see any visual differences regarding my skin but I hope that this change will at least help to boost my poor immune system.
Thanks for all your messages, be it comments or emails and I apologise for not responding to everything, though I do read everything. I'm just lacking motivation and feel as though I've slowed life right down just to get by, but I know everything will need to resume to normal speed soon, as I just don't have time to be ill.
Ok, I've rambled on enough. I hope everyone is well and I'm sorry there are no photos. My camera battery has died and I can't find the cable to recharge it. Oh well.
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!
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!
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