I think I may be flaring...
Lots itchier than normal, skin is really dry again and sore to touch, a few lint wounds and a bit of oozing too. not fun :(
I hate flaring for a few reasons..
1) It makes me wonder if the ciclo is even working, and if isn't then i'm putting my body at risk of other things such as skin cancer and liver disease/kidney problems for no reason.
2) If the ciclo is working and these are just mini flares that are being dampened by ciclo...how much would I be sufferng if I weren't on ciclo?! and how badly will I suffer when I have to reduce and eventually stop ciclo? I actually skipped a dose by mistake a few days ago so maybe this is the result, but i thought it took a while for the ciclo to actually affect the system so I'm not sure.
3) I still have that classic eczema mentality that somehow a flare or bad skin is my fault. "If i could just keep my nails short", "If i could just stop scratching" etc etc etc. For so many years doctors have drummed it into me "YOU MUST NOT SCRATCH" that in my head scratching is the problem. In my head I don't actually even HAVE an underlying problem i just need to STOP SCRATCHING. This was the best thing about starting TSW for me, I started to realise that there are some things that are out of control, my skin will flare and break just the same if I scratch or if i dont - within reason! obviously scratching can damage the skin and slow down healing but whether I scratch or not I still have tsw, it's out of my control. That's a really liberating feeling
Anyway hopefully this will pass. I have a derm appointment on 1st June and I'm terrified he will want to reduce my ciclo :( I'm enjoying having quite good skin and I don't want that to change before my holiday on 1st July!!
Hope everyone is well
S x
Monday, 19 May 2014
Saturday, 17 May 2014
Hello hair!
Hi all!
Just a quick one and a warning that if I bump into you on the street, I am not actually currently transitioning into the American werewolf in London (or the British werewolf in...Britain), it is in fact apparently just a side effect from the ciclosporine (I hope, maybe stay away from me during future full moons, just in case)
I actually had to TRIM my arm hair today, with SCISSORS! I also have lovely attractive long blonde furry sideburns 8) maybe I'll start a trend? The hair on my head is thicker too but not in a good way, it's really wiry and uncontrollable. I've asked around though and apparently this is common & it should settle down in a few months.
If it doesn't maybe I'll just start auditioning for a walk-on part in the next Twighlight film or something.
Here's a delightful photo of my caterpillar arm pre-trim
S x
Just a quick one and a warning that if I bump into you on the street, I am not actually currently transitioning into the American werewolf in London (or the British werewolf in...Britain), it is in fact apparently just a side effect from the ciclosporine (I hope, maybe stay away from me during future full moons, just in case)
I actually had to TRIM my arm hair today, with SCISSORS! I also have lovely attractive long blonde furry sideburns 8) maybe I'll start a trend? The hair on my head is thicker too but not in a good way, it's really wiry and uncontrollable. I've asked around though and apparently this is common & it should settle down in a few months.
If it doesn't maybe I'll just start auditioning for a walk-on part in the next Twighlight film or something.
Here's a delightful photo of my caterpillar arm pre-trim
S x
Sunday, 11 May 2014
Thinking about addiction...
So first of all, I'm aware of how neglectful I've been with this blog, I hope I can be forgiven...
I suppose it's because things are really going okay for me at the minute, it's nice not to have to dwell on my skin all the time.
But, I did want to post about something that's been on my mind for a couple of weeks.
Being a member of ITSAN and also a few of the facebook groups, I've heard a lot about people's stories, and most people have (sadly) been using steroids for a long long time, most for decades. I've also been using steroids for decades - since I was a baby. But, something I've been thinking about that I don't think is discussed much...when do you think you became addicted?
I suppose for some this might not be easy to figure out but I was thinking the other day that I spent a Summer in the US in 2012 and didn't take any of my topical steroid creams with me and didn't have too much problem with my skin. I was still using emollient but no steroids at all.
Then, when I got back I moved house and got a new GP, who gave me a repeat prescription for fucibet and eumovate.. Then I remember my skin was great in Summer 2013, and although I was using steroids daily I was applying quite sparingly. My problems really started in around October 2013 when I was using steroids twice daily and noticing no improvement, skin was CONSTANTLY dry and sore, and I would cry when I showered because the water hurt my skin. I kept thinking that this didn't feel like normal eczema, I remember thinking I was allergic to my emollients and trying lots of different types to get my skin to heal but to no avail. I was prescribed betnovate in November 2013 and used for a month before finding ITSAN and that's when my TSW journey began.
So, by this calculation, maybe I have only been addicted to topical steroids for max. 2 years? It's hard to say for sure but I only really noticed a change in my skin in October..maybe I have only been addicted for a few months? This would make sense to me because although my initial withdrawal was painful, I've noticed a significant improvement quite quickly. Obviously I am still on ciclo and so I'm hesitant to make any assumptions, it could be when I reduce that I notice a massive decline and all my calculations are wrong! I spoke about this with one of my tsw friends (Hi Jo!) who does not use immunos. She thinks she has probably been addicted for around 2 years too and is now only experiencing mini-flares,her skin is much better than when she was using steroids.
Anyway I have a derm appointment on the 2nd of July and I'm going to bring up reducing the ciclo. I think I'll have a hard time convincing him because he wants to see my skin super-clear before he thinks that the ciclo is working for me because, obviously, he doesn't believe in TSW! But hopefuly I can convince him and work my way towards becoming properly drug-free!
How is everyone doing? I'm 4 months off TS now, counting down the days 'til 6 months TS free! x
I suppose it's because things are really going okay for me at the minute, it's nice not to have to dwell on my skin all the time.
But, I did want to post about something that's been on my mind for a couple of weeks.
Being a member of ITSAN and also a few of the facebook groups, I've heard a lot about people's stories, and most people have (sadly) been using steroids for a long long time, most for decades. I've also been using steroids for decades - since I was a baby. But, something I've been thinking about that I don't think is discussed much...when do you think you became addicted?
I suppose for some this might not be easy to figure out but I was thinking the other day that I spent a Summer in the US in 2012 and didn't take any of my topical steroid creams with me and didn't have too much problem with my skin. I was still using emollient but no steroids at all.
Then, when I got back I moved house and got a new GP, who gave me a repeat prescription for fucibet and eumovate.. Then I remember my skin was great in Summer 2013, and although I was using steroids daily I was applying quite sparingly. My problems really started in around October 2013 when I was using steroids twice daily and noticing no improvement, skin was CONSTANTLY dry and sore, and I would cry when I showered because the water hurt my skin. I kept thinking that this didn't feel like normal eczema, I remember thinking I was allergic to my emollients and trying lots of different types to get my skin to heal but to no avail. I was prescribed betnovate in November 2013 and used for a month before finding ITSAN and that's when my TSW journey began.
So, by this calculation, maybe I have only been addicted to topical steroids for max. 2 years? It's hard to say for sure but I only really noticed a change in my skin in October..maybe I have only been addicted for a few months? This would make sense to me because although my initial withdrawal was painful, I've noticed a significant improvement quite quickly. Obviously I am still on ciclo and so I'm hesitant to make any assumptions, it could be when I reduce that I notice a massive decline and all my calculations are wrong! I spoke about this with one of my tsw friends (Hi Jo!) who does not use immunos. She thinks she has probably been addicted for around 2 years too and is now only experiencing mini-flares,her skin is much better than when she was using steroids.
Anyway I have a derm appointment on the 2nd of July and I'm going to bring up reducing the ciclo. I think I'll have a hard time convincing him because he wants to see my skin super-clear before he thinks that the ciclo is working for me because, obviously, he doesn't believe in TSW! But hopefuly I can convince him and work my way towards becoming properly drug-free!
How is everyone doing? I'm 4 months off TS now, counting down the days 'til 6 months TS free! x
Wednesday, 30 April 2014
Look what I just found...
At least I have something I can burn if I ever get cold... ;)
Straight in the bin for you mr repeat prescription!
Friday, 18 April 2014
DAY 99
Tomorrow will be day 100 but it's my housemate's birthday and i don't plan on coming on here to blog so i'll just celebrate 99 days the same way i would 100 :)
Things are going okay, i just got out of possibly one of my worst flares since i started, it was horrible but it's passing now and i'm just flakey and scaly again which i can deal with.
i keep meaning to come on here and do a much-procrastinated post about MW but i never get around to it. I'm definitely going to write a detailed post this week
Lots of bank holiday & easter love!
S x
Things are going okay, i just got out of possibly one of my worst flares since i started, it was horrible but it's passing now and i'm just flakey and scaly again which i can deal with.
i keep meaning to come on here and do a much-procrastinated post about MW but i never get around to it. I'm definitely going to write a detailed post this week
Lots of bank holiday & easter love!
S x
Thursday, 10 April 2014
Happy 3 months to me!
Today marks my 3rd month off topical steroids! Big milestone :)
I'm sure some of you who follow my progress will know that when I quit TS I was actually hospitalised and put on a short course of oral steroids which I had to taper down, so although this is a big milestone I'm actually only 1 month steroid free but I'm still proud I've reached this milestone!
When I first started this journey I was reading the blogs of people who were so far into their progress and never imagined I would have the strength to make it to those markers, but the time has gone so much faster than I imagined and I'm optimistic for the future.
Just a short one for today really, I want to do a post soon about MW, there's always a lot of questions surrounding it and I'd like to have a blog post of my own that I can refer to when I'm asked questions. I'll do a bit of an update on where my skin is at then too.
Hope everyone is doing well
S x
Monday, 31 March 2014
Day 78/Day 19
78 days off TS, 19 off all steroids (inc. orals)
(/end of edit 03/04)
Left arm 26/03, 27/03, 31/03
Just a photo update today. Flared up a bit last week and it's healed nicely, I'm having a little mini break (still v dry and nowhere near 100% but much more bearable).. they never last more than a few days but those are the best few days.
Wrist 26/03, 27/03, 31/03
EDIT: wrist 03/04 really happy with how it's healing :)
Even though I hate these flares I am encouraged by the fact that they pass really quickly, at the minute id say I'm passing through 1 cycle a week, which is pretty fast I think.
Can't wait to reach the 3 month mark
S x
Wednesday, 26 March 2014
Feelin' Purple
So today I post this song because it's appropriate (and also because it's great!)...I'm definitely feeling (and looking) kinda purple!
I'll post some photos for you here but the colour really doesn't show..I'm a lovely shade of violet really I am!
I'm flaring now, I'm sure of it. All the joint areas are suffering a bit, like insides of my elbows and my wrists are particularly sore, but I'm..ready for it...2 weeks steroid free! and 75 days topical steroid free. I'm also well into MW now too, I can't remember how far, i think 3 weeks or a month?
Oh and I've got a bit of sexy elephant skin going on on my hands now too...here's the photos
Anyway even though it looks and feels bad today I know this is a cycle and I trust the process so I'm keeping a sense of humour and positivity about me.
How's everyone doing?
S x
Saturday, 22 March 2014
"Hypochondriac"
Ok so just checked the post and I have a letter from yesterday that was a copy of one my derm has sent to my gp. Now, luckily I'm the sort of person who laughs about things rather than cries about them as this is one of the sentences in the letter:
"Sarah has severe atopic chronic eczema that requires the use of steroids, possibly indefinitely. However Sarah refuses to admit this and wil not use steroids. Sarah actively refuses treatment which leads me to believe there may be some form of hypochondria involved"
HA! I'm literally all out of words. Sometimes I think my derm just likes to be a dick on purpose 😡
Anyway, I'm off to enjoy what's left of my weekend, hope you all do the same
S x
Thursday, 20 March 2014
8 days...
So, skin update.. I think I'm flaring a bit. My daily salt baths have started to sting :( honestly when I stopped the pred I had about 5 or 6 days where I didn't rebound at all but I think maybe I'm rebounding now. Or it could just be a normal tsw flare, it's so hard to say! I upped my dose of ciclo when I last went to see my derm anyway so I'm hoping i'll see the results of that soon, unless I've already seen them... Oh it's all so complicated! I'm just going to roll with it; grit my teeth through the worst parts and look forward to the best parts
Anyway I'm looking forward to the next couple of weeks, lots of things to look forward to and to take my mind off things, I've been feeling really self conscious lately which really isn't like me :/ hmm
Hope everyone is doing well
s x
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