Its funny how something can spark a long-buried memory or trigger something in your brain. A phone call a few weeks ago led to me remembering something that happened about 13 years ago. I was actually in steroid withdrawals without realising it. Sit down comfortably and I will tell you my story....
I was chatting with my mother in law (yes, we are friends!) on the phone and she was telling me how she had been looking over some old diaries from 1999 when I was pregnant with my first child. She said she had made a lot of entries in the diary about how bad my eczema was. This was what caused all my memories to come flooding back.
When I found myself pregnant with my first child, I had already been using moderate to strong steroid creams daily for about 3 years. In other words, I was addicted to them but didn't know it. The discovery that I was pregnant made me paranoid about doing everything right. I only ate the healthiest foods and I stopped using my steroid creams for fear of harming the baby. Of course, within a week of stopping the creams, my skin went crazy. Of course, I thought it was the pregnancy affecting my skin. I also thought that my eczema was bad because I needed the steroid creams.
My skin got so bad, my poor hubby, who was working nights at the time was finding it hard to look after me and get enough sleep, so I went to stop at my mom's house for a few days. I was lying on the settee, red from top to toe and my mom was using non-steroid creams on me. I think she used 50/50 WSP and liquid paraffin. As you can imagine, my skin went bonkers, craving the steroid creams. This was the first time I noticed the ooze and the ooze smell. "What the heck is that weird smell?" I thought, but dismissed it as being overly sensitive due to pregnancy.
My skin got worse and I was crying all the time. It hurt to wash my skin. I remember saying something stupid, like I wanted to die, which upset my mom and dad. They didn't realise how bad my skin felt. It was like I was on fire. Movement was agony. I worried about the stress affecting the little life in my tummy.
After I went back home, we got an emergency appointment with the dermatologist at the hospital. I remember sitting in the waiting room wailing and sobbing with pain. She saw me straight away and said that it was safe for me to use the steroids in pregnancy and whisked me away to a treatment room where the nurse daubed tube after tube of eumovate ointment on my skin before wet wrapping me in bandages to let it soak in deeply. Naturaly i thought that the dermatologist was the greatest person in the world.
For the rest of my pregnancy I remember ordering a tube of Eumovate a week. I got through tons of it. Luckily, my baby was born without complications, although I continued to use steroids whilst breastfeeding the poor little fella. He is very lucky that he didn't end up addicted to steroids.
I WISH I had known then what I know now. It is so obvious that the agony was due to steroid withdrawal, but I knew nothing about it at the time. The sad thing is that if I had, I could have withdrawn a lot easier, having only 3 years steroid use under my belt. After that I went on to use steroids daily until November 2011, when I stopped. Goodness knows what further damage those years of applications did to my skin and blood vessels.
Saturday, 30 March 2013
Friday, 29 March 2013
6 Days Into This Flare
My last skin flare at the end of February lasted 10 days, so I am expecting this one to be similar. it is just a case of sitting it out and waiting.
Last night was rough. My neck started oozing fluid as soon as my head hit the pillow and the oozing, red skin has now spread down my neck to my chest. I woke up at 3:00 a.m. and it took me hours to doze off again. It was hard to get comfortable. in the end I zonked out completely and finally woke up about 8:30 which is late for me. There was blood all over the pillowcase, flakes in the bed and stinking ooze all over the duvet. More washing today then!
I am quite philosophical about skin flares. I just view them as necessary medicine.I was thinking last night of the analogy of a building project. If an ugly building is to be remodelled, there will be a lot of disruption and chaos whilst the repairs and reconstruction take place. But in the end, the result is worth it. It looks like my face and neck are going through a reconstruction, but I know that in a few days, my skin will be glowing and better than ever. The sun has even decided to shine today!
Stay positive, Red-Skinners! The current flare may be the last one before you heal completely!
Last night was rough. My neck started oozing fluid as soon as my head hit the pillow and the oozing, red skin has now spread down my neck to my chest. I woke up at 3:00 a.m. and it took me hours to doze off again. It was hard to get comfortable. in the end I zonked out completely and finally woke up about 8:30 which is late for me. There was blood all over the pillowcase, flakes in the bed and stinking ooze all over the duvet. More washing today then!
I am quite philosophical about skin flares. I just view them as necessary medicine.I was thinking last night of the analogy of a building project. If an ugly building is to be remodelled, there will be a lot of disruption and chaos whilst the repairs and reconstruction take place. But in the end, the result is worth it. It looks like my face and neck are going through a reconstruction, but I know that in a few days, my skin will be glowing and better than ever. The sun has even decided to shine today!
Stay positive, Red-Skinners! The current flare may be the last one before you heal completely!
Tuesday, 26 March 2013
More Bad Skin Photos (sorry)
Another cold night and I'm sad to say that I'm still flaring. I woke up about 4:00 a.m. again to a soaking wet neck and face. It was hard to get comfortable. I lost another layer of skin off my neck in my sleep and it is even tighter today.
Unfortunately, there is a concert on at the school, so I have to go and watch the kids sing in a boiling hot school hall. I have laid off the hemp cream today, because it stinks and I don't want the smell of hemp wafting off me during the concert....
So here are todays photos. They are not for the fainthearted.
Lots of cuts in my neck where the skin has stretched and split. I am walking around holding my neck rigid, looking like I am wearing a neck brace.
The other side of my neck. You can see how red the skin is. The oozing is the blood serum leaking out from the skin as the blood vessels expand. I have lots of wet creases in my neck from the oozing in the night. They sting like hell.
My miserable face! Generally red, flaky and sore from oozing all night.
OK I know this is a weird shot and I look a bit like ET on this one, but I wanted to show how bad my chin is! I have a deep ridge under my chin where the skin has cracked. It is very sore.
My son was off school yesterday (snow day) and he wanted to know why I had the camera. I told him I was taking pictures for the blog.
"I've seen your blog...." he said.
"...its just loads of weird pictures of your face and neck."
Erm...well, I guess he is right.
16 months in folks! It is a L-O-N-G road. Moral of the tale; don't use steroid creams in the first place, especially not on your FACE AND NECK!!!!!
Unfortunately, there is a concert on at the school, so I have to go and watch the kids sing in a boiling hot school hall. I have laid off the hemp cream today, because it stinks and I don't want the smell of hemp wafting off me during the concert....
So here are todays photos. They are not for the fainthearted.
My son was off school yesterday (snow day) and he wanted to know why I had the camera. I told him I was taking pictures for the blog.
"I've seen your blog...." he said.
"...its just loads of weird pictures of your face and neck."
Erm...well, I guess he is right.
16 months in folks! It is a L-O-N-G road. Moral of the tale; don't use steroid creams in the first place, especially not on your FACE AND NECK!!!!!
Monday, 25 March 2013
Bad Weather Blues Part 2
Still snowing.....
My garden looks like this...
....my neck looks like this.....
....and my face looks like this.
For some reason, the area between my nose and top lip is particularly bad today. Yesterday, that area was wet and oozy and it looked like I hadn't wiped my nose! Yuk! Today is even worse because the ooze has dried and it looks like I have a bogey under my nose.
If you look at the picture of my neck, you can see rips in my skin. I think this is where the skin has actually split and ripped because of the tightness, so when I bend my neck, the skin tears. And yes, it hurts as bad as it looks.
I slept really well last night, strangely enough, although |I woke up around 4:00 a.m. to a soaking wet neck. In the morning, the air dries the ooze and tightens the skin to a taught, papery layer. This is why it is SO important to have some sort of moisturiser by the bed. When I wake up, I prop myself up and slowly cream up the bits that won't move! I call it "unsticking myself". It's the reason that I hate mornings.
Being a snowy day, I would have loved the chance to stay inside all cosy, but the rotten school has decided to open today and hold a "Science Day" for the parents, which means I have to go out looking like this. Maybe I should be an exhibit for Science Day and have my own little table about the dangers of cortisone...
On a brighter note, you will notice that my facial skin on my cheeks is white! White! Its nice to see a lack of colour in my cheeks for a change! I still think the perioral (fancy word for round the mouth) dermatitis is worse that other areas because of using the inhaler for so many years. I'm so glad to be off it now.
I'm wondering how long this flare will last. Hopefully it will be short and sharp. It is rare for a flare to last more than a week, so I'm hoping things will change soon. For the record, the rest of me is fine. My neck and mouth area are the last strongholds of the TSW rash, so please don't go thinking "Oh my days! This woman is 16 months off the steroids and still looks like a bag of scabs!", because actually, the rest of me is normal skin. I'm just miffed because I know that some people are healed by 16 months. But hey, if I have to play a little extra time, there's not much I can do about it.
My garden looks like this...
For some reason, the area between my nose and top lip is particularly bad today. Yesterday, that area was wet and oozy and it looked like I hadn't wiped my nose! Yuk! Today is even worse because the ooze has dried and it looks like I have a bogey under my nose.
If you look at the picture of my neck, you can see rips in my skin. I think this is where the skin has actually split and ripped because of the tightness, so when I bend my neck, the skin tears. And yes, it hurts as bad as it looks.
I slept really well last night, strangely enough, although |I woke up around 4:00 a.m. to a soaking wet neck. In the morning, the air dries the ooze and tightens the skin to a taught, papery layer. This is why it is SO important to have some sort of moisturiser by the bed. When I wake up, I prop myself up and slowly cream up the bits that won't move! I call it "unsticking myself". It's the reason that I hate mornings.
Being a snowy day, I would have loved the chance to stay inside all cosy, but the rotten school has decided to open today and hold a "Science Day" for the parents, which means I have to go out looking like this. Maybe I should be an exhibit for Science Day and have my own little table about the dangers of cortisone...
On a brighter note, you will notice that my facial skin on my cheeks is white! White! Its nice to see a lack of colour in my cheeks for a change! I still think the perioral (fancy word for round the mouth) dermatitis is worse that other areas because of using the inhaler for so many years. I'm so glad to be off it now.
I'm wondering how long this flare will last. Hopefully it will be short and sharp. It is rare for a flare to last more than a week, so I'm hoping things will change soon. For the record, the rest of me is fine. My neck and mouth area are the last strongholds of the TSW rash, so please don't go thinking "Oh my days! This woman is 16 months off the steroids and still looks like a bag of scabs!", because actually, the rest of me is normal skin. I'm just miffed because I know that some people are healed by 16 months. But hey, if I have to play a little extra time, there's not much I can do about it.
Sunday, 24 March 2013
Bad Weather Blues
TSW is usually a pretty random affair, with not much indication as to what is causing flares. However, I have discovered one thing guaranteed to bring on a flare in my case; cold weather.
We have been suffering arctic conditions here in the UK and my skin went downhill as quickly as the weather did. As soon as the cold weather hit, my neck started oozing again. Yes, that's right oozing AGAIN after 16 blinkin' months off the steroids.
Last night I was freezing cold in bed and buried my head deep under the duvet. When I woke up, I was a mass of dead skin and ooze. Suffice to say, I didn't smell all that great and headed straight for a long soak in the bath. My neck was covered in "Skin Putty", a wonderful mix of dead skin, moisturiser and ooze which somewhat resemble grey bits of playdough. Honestly, I'm sure if I collected all the stuff up, I could sculpt something. My poor old bed is full of bits of it, which harden when dry. Sorry to be gross.
My neck skin is now so tight that I cannot look up. The skin just won't stretch that far. It stings like crazy. My whole face is flaky too. So much for thinking that the last flare was the final one.
I am desperate for some warm sunny weather and am now dreading going to bed tonight. Neck flares are officially the worst.
On a positive note, I think I am finally off the steroid inhaler. I say "think" because I cannot be completely sure yet, but I haven't needed it for a few days, which is a good sign.
I wish I could post better news, but I'm afraid TSW is an unpredicatable little beast at the best of times. I'm dead jealous of all you red-skinners living in sunny climes.
We have been suffering arctic conditions here in the UK and my skin went downhill as quickly as the weather did. As soon as the cold weather hit, my neck started oozing again. Yes, that's right oozing AGAIN after 16 blinkin' months off the steroids.
Last night I was freezing cold in bed and buried my head deep under the duvet. When I woke up, I was a mass of dead skin and ooze. Suffice to say, I didn't smell all that great and headed straight for a long soak in the bath. My neck was covered in "Skin Putty", a wonderful mix of dead skin, moisturiser and ooze which somewhat resemble grey bits of playdough. Honestly, I'm sure if I collected all the stuff up, I could sculpt something. My poor old bed is full of bits of it, which harden when dry. Sorry to be gross.
My neck skin is now so tight that I cannot look up. The skin just won't stretch that far. It stings like crazy. My whole face is flaky too. So much for thinking that the last flare was the final one.
I am desperate for some warm sunny weather and am now dreading going to bed tonight. Neck flares are officially the worst.
On a positive note, I think I am finally off the steroid inhaler. I say "think" because I cannot be completely sure yet, but I haven't needed it for a few days, which is a good sign.
I wish I could post better news, but I'm afraid TSW is an unpredicatable little beast at the best of times. I'm dead jealous of all you red-skinners living in sunny climes.
Wednesday, 20 March 2013
16 Months off the Steroids (photo)
Sorry I have been so remiss about posting lately. I have been really busy.
I have wanted to post some photos for ages, so here we are:
I am really happy with my skin at the moment. You can see how much the redness has gone away. The skin colour is almost normal again. All those nasty oozy bits on my cheeks have gone. You can see a bit of dryness round my mouth, but that is easy to zap with a bit of moisturiser.
This is the most normal I have looked in ages!
My neck is still a bit dry and tight and my hands are a bit flaky because I have been wearing socks over them, but everything seems to be improving dramatically. I really hope this is it now. The final dash to the finish line. I would really like to think I am done flaring.
I have cut down he steroid inhaler to absolute minimum. I caught a cough from the kids, but was determined not to use the steroid to relieve it. After all, steroids damp down the immune system, so how would that help? I have decided to take the steroid inhaler only when absolutely necessary and hope that the gap between puffs is so long that I can give up completely soon. An inhaler-free life is within my grasp!
So I have nothing but positive news to report. I think I am nearly healed. I can't believe how far I have come when I look at my skin these days.
I have wanted to post some photos for ages, so here we are:
This is the most normal I have looked in ages!
My neck is still a bit dry and tight and my hands are a bit flaky because I have been wearing socks over them, but everything seems to be improving dramatically. I really hope this is it now. The final dash to the finish line. I would really like to think I am done flaring.
I have cut down he steroid inhaler to absolute minimum. I caught a cough from the kids, but was determined not to use the steroid to relieve it. After all, steroids damp down the immune system, so how would that help? I have decided to take the steroid inhaler only when absolutely necessary and hope that the gap between puffs is so long that I can give up completely soon. An inhaler-free life is within my grasp!
So I have nothing but positive news to report. I think I am nearly healed. I can't believe how far I have come when I look at my skin these days.
Thursday, 14 March 2013
On the Move
My TSW rash seems to be on the move again!
Veteran red-skinners will know that this is entirely normal and one of the quirky things that sets TSW apart from regular eczema.
Thankfully, my face is looking a lot better. I just have a bit of a scaly rash round my mouth, but my cheeks are finally clearing up. I will post photos when I have chance, but I've had the kids at home with flu and haven't had much time to blog. I thought I could go without my socks on my hands last night, which was a big mistake and I woke up with a wet oozy jawline.
My neck is giving me hell! The skin on my neck is so tight, it is unbearable. I feel like if I twist my neck, the skin will rip open. It honestly feels like it has no elasticity at all. I am worried about ending up with stretch marks on my neck!
The odd thing is that the rash is now moving downwards. The area below the neck is really red and mottled and I also have a bad rash around my belly-button. Weird. The good news is that these areas are a lot easier to cover up than my face. The average T shirt covers a multitude of sins. Today, I could almost have passed as "Normal".
It was sunny today but cold. The sun has two good effects. It seems to make my TSW look better and it also makes everyone else look red, so it kind of evens things out!
Veteran red-skinners will know that this is entirely normal and one of the quirky things that sets TSW apart from regular eczema.
Thankfully, my face is looking a lot better. I just have a bit of a scaly rash round my mouth, but my cheeks are finally clearing up. I will post photos when I have chance, but I've had the kids at home with flu and haven't had much time to blog. I thought I could go without my socks on my hands last night, which was a big mistake and I woke up with a wet oozy jawline.
My neck is giving me hell! The skin on my neck is so tight, it is unbearable. I feel like if I twist my neck, the skin will rip open. It honestly feels like it has no elasticity at all. I am worried about ending up with stretch marks on my neck!
The odd thing is that the rash is now moving downwards. The area below the neck is really red and mottled and I also have a bad rash around my belly-button. Weird. The good news is that these areas are a lot easier to cover up than my face. The average T shirt covers a multitude of sins. Today, I could almost have passed as "Normal".
It was sunny today but cold. The sun has two good effects. It seems to make my TSW look better and it also makes everyone else look red, so it kind of evens things out!
Sunday, 10 March 2013
Quiet Weekend
Not much to report today.
I have been stuck in all weekend nursing my fluey family. Miraculously, I was the only one not to come down with the lurgy.
Being stuck inside with the heating on full blast has not really done my skin a world of good, but I am hanging in there. My lungs are still good, which is the main thing at the moment. I even managed to sit in a vets waiting room yesterday, surrounded by a load of dogs and I had no allergies at all!
My trouble area is still my neck. The rest of me is fine, but my neck is tight with lots of dryness. It started oozing again last night. Yuk. I will be so glad when the TSW rash has gone from my face and neck. The skin round my mouth and cheeks is papery and peels easily, leaving wet areas underneath. I have to resist the urge to pick off the papery skin, because it leaves red, wet areas that just grow another layer of papery skin over the top and the process repeats itself. I will wear socks on my hands tonight as my face is getting all scratched up and bleeding from picking at it with my nails.
I also have a weird swelling under my eye. I haven't got a clue whether it is TSW related. It hurts a bit when I blink and looks slightly bruised. It hasn't come to a head, so presumably it is not a stye. I thought it might be cold sore virus, but there are no blisters, so it is a bit of a mystery. hopefully it will go down by itself.
I have been stuck in all weekend nursing my fluey family. Miraculously, I was the only one not to come down with the lurgy.
Being stuck inside with the heating on full blast has not really done my skin a world of good, but I am hanging in there. My lungs are still good, which is the main thing at the moment. I even managed to sit in a vets waiting room yesterday, surrounded by a load of dogs and I had no allergies at all!
My trouble area is still my neck. The rest of me is fine, but my neck is tight with lots of dryness. It started oozing again last night. Yuk. I will be so glad when the TSW rash has gone from my face and neck. The skin round my mouth and cheeks is papery and peels easily, leaving wet areas underneath. I have to resist the urge to pick off the papery skin, because it leaves red, wet areas that just grow another layer of papery skin over the top and the process repeats itself. I will wear socks on my hands tonight as my face is getting all scratched up and bleeding from picking at it with my nails.
I also have a weird swelling under my eye. I haven't got a clue whether it is TSW related. It hurts a bit when I blink and looks slightly bruised. It hasn't come to a head, so presumably it is not a stye. I thought it might be cold sore virus, but there are no blisters, so it is a bit of a mystery. hopefully it will go down by itself.
Saturday, 9 March 2013
Progress is Slow But Sure
I have had a mega-busy week and spent most of it outdoors at the mercy of the elements, but my skin has not really given me too much trouble.
Don't get me wrong, I'm not announcing that I am healed yet, but things are at a stage where they are not really encroaching on my life. The odd dab of moisturiser throughout the day is enough to keep any trouble at bay. My body skin is almost normal apart from some tiny patches on my calves and back of my knees. My neck is still the worst area, but I keep moisturising and it doesn't stiffen up too much.
My face is OK. It just looks like mild sunburn. If I could stop scratching in the night, all the tiny superficial scratches and gouges in my cheeks would soon go away. The area round my mouth still gets dry and flaky, which I still think is due to the inhaler. Think about it: I puff on my puffer and then breathe out a fine mist of steroid-breath when I exhale. Some of that steroid must affect the skin directly around my mouth.
The good news is that I have stepped down again on the inhaler. I am now taking just one puff in three, which means that some days I don't use the inhaler at all. My body didn't like it at first and responded with a slight tightness and some extra mucus, but I took my blue reliever rather than falling back to the steroid. After a couple of days, my body is now used to the lower dose. I will give it a few weeks and then consider either dropping down further or stopping completely. It does finally feel within my grasp.
Unfortunately my whole family have come down with flu. If I get it, it will cobble up my poor old lungs. I'm hoping that the cocktail of flu vaccinations they have pumped into me over the last few years will keep the nasties at bay.
Don't get me wrong, I'm not announcing that I am healed yet, but things are at a stage where they are not really encroaching on my life. The odd dab of moisturiser throughout the day is enough to keep any trouble at bay. My body skin is almost normal apart from some tiny patches on my calves and back of my knees. My neck is still the worst area, but I keep moisturising and it doesn't stiffen up too much.
My face is OK. It just looks like mild sunburn. If I could stop scratching in the night, all the tiny superficial scratches and gouges in my cheeks would soon go away. The area round my mouth still gets dry and flaky, which I still think is due to the inhaler. Think about it: I puff on my puffer and then breathe out a fine mist of steroid-breath when I exhale. Some of that steroid must affect the skin directly around my mouth.
The good news is that I have stepped down again on the inhaler. I am now taking just one puff in three, which means that some days I don't use the inhaler at all. My body didn't like it at first and responded with a slight tightness and some extra mucus, but I took my blue reliever rather than falling back to the steroid. After a couple of days, my body is now used to the lower dose. I will give it a few weeks and then consider either dropping down further or stopping completely. It does finally feel within my grasp.
Unfortunately my whole family have come down with flu. If I get it, it will cobble up my poor old lungs. I'm hoping that the cocktail of flu vaccinations they have pumped into me over the last few years will keep the nasties at bay.
Monday, 4 March 2013
Coming Out of My Flare
The last flare lasted 10 days and laid me low again. My neck and face oozed and I was bright red. Then, on Wednesday night, without warning, the oozing stopped. I have been OK ever since.
The skin is needing less moisturiser and is looking good. It is still a bit pink, but texture-wise it is good. It is always easy to gauge how my skin is doing by noting how often I post on the blog. When I post every day, the skin is bad. When there are long gaps between posts, it means I am out living my life! I just squeezed today's post in, but have to nip out again in a minute to fetch the kids from school!
Over on the Itsan forum, check out the post from a guy called DK, who has posted the most wonderful before and after photos (you have to register to view the forum, but it is free). Very encouraging. So many are healing. I know it won't be long for me now.
I am dropping another puff on the inhaler starting today. My lungs feels ready for it. More about that in a future post.
The skin is needing less moisturiser and is looking good. It is still a bit pink, but texture-wise it is good. It is always easy to gauge how my skin is doing by noting how often I post on the blog. When I post every day, the skin is bad. When there are long gaps between posts, it means I am out living my life! I just squeezed today's post in, but have to nip out again in a minute to fetch the kids from school!
Over on the Itsan forum, check out the post from a guy called DK, who has posted the most wonderful before and after photos (you have to register to view the forum, but it is free). Very encouraging. So many are healing. I know it won't be long for me now.
I am dropping another puff on the inhaler starting today. My lungs feels ready for it. More about that in a future post.
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