Day 101 brings even more progress and I am delighted with the current state of my skin, which is the best it has been since withdrawals started.
I am so happy that I am starting to see results and real skin healing, as I didn't really expect any kind of results before 6 months.
I'm regaining some normality again, going out and socialising and not even thinking about my skin. It would be great if I got a good couple of weeks break before the next flare, because I am hoping now at this point that the gaps between flares will get longer.
I know that some people in the early stages of topical steroid withdrawal wonder whether it is possible to heal. I know I was one of them. I remember wondering in the early stages whether the promise of being healed was some kind of cruel hoax, or moneymaking scam. It is natural to be sceptical, especially as a lot of websites offer a "cure" for eczema, at a price, taking advantage of the vulnerable.
But this is real. I hope my photo documentation is proving this.
The photo evidence from Dr Fukayas research, as well as Dr Rapaports over 2000 healed, not to mention the many in Japan, the Facebook group and on the google support group who are healed or almost healed, PROVE that skin can improve when topical steroid medication is stopped.
The cure is free. All I had to do was cease using topical creams for my steroids.
Nobody has solicited any money from me. In fact, I have saved money, because I am not paying out for prescription creams.
The hard part is the withdrawal itself. Anyone thinking of withdrawing from steroid creams needs to consider the fact that they will be DISABLED for at least a couple of months, I'm talking burning, oozing skin, swelling, lack of sleep and pain. Workers would need to seriously consider taking 2-3 months off work in the initial stages.
That is why it is up to each individual to weigh up for themselves whether they really want to withdraw from steroid creams. It is a very hard process to go through, but I feel that in my case, it has been worth it. I'd never tell anyone "You should try TSW" because it is an incredibly personal decision and people shouldn't feel pressured into it without considering what is involved.
Wednesday 29 February 2012
Tuesday 28 February 2012
Day 100 *hooray*! (progress photos before/after)
Yes, I finally made it to day 100! Amazing! It has actually gone really fast.
So where am I at this point in time? Pretty good actually.
Here is a photo of my neck that I took today. The rash is still there, but it is a lot paler and more diffuse. I like that there are also areas of white skin! Compare it to the picture below, which was taken during a flare a few weeks ago:
The skin was really angry here, so I am pleased with the improvement and the fact that the flares are getting less intense. I am hoping that the bad flare photos I took a few weeks ago, were the peak and now I have seen the worst of it.
Now for an upade on my leg wound....
Here is a photo I took today. I have been using the moist healing method over the last week or so and the skin is returning back to normal. Please compare it to a couple of weeks ago...
This is the same wound before I did the moist healing. It was absolutely raw, with lots of yellow discharge. I really worried that the area would get infected, but thankfully, it never did.
Now an update on my arm....
The red skin has really faded on my arm and turned a pale pink. Only the inside of the arm is affected, as the rest of the arm is normal skin. I no longer have the red arm-white palm which everyone gets at the start of steroid withdrawal. The skin is a bit flaky, but I think over the coming weeks this area will get a lot better, especially if I can get some sun on it.
Just look at the state of my arm previously....
Just a few weeks ago, you can see how wrinkly and damaged the arm was. The skin seems smoother now and able to hold more moisture.
Now for what has been a problem area, the back of my leg...
The skin here has improved a lot and is quite smooth now. Walking is not an issue. A month or so ago, I was really struggling to walk. This is how my leg was at its worst....
This was horrible and one of the worst symptoms. I am glad that my leg is returning to normal, as I am not normally one to sit around the house, and this has disabled me.
The improvements are clear to see. My skin is getting better every day and with the end of each flare I see better skin. I am confident that I will heal, although the process is excruciatingly slow and it may take another couple of hundred days before I see anything that resembles normal skin.
I am so grateful for the google support group and the addictedskin site that brought me to this point and helped me to realise that steroid addiction is curable. Kelly who runs the addictedskin site is trying to set up an organisation to help people affected by steroid addiction and has been funding it largely from her own pocket. Please consider donating via the addictedskin website to offeset the costs that are involved in setting up these support and information services. Since she set up her site, she had, to date only received 3 donations, despite the fact that her site has helped thousands of people.
So where am I at this point in time? Pretty good actually.
Now for an upade on my leg wound....
Now an update on my arm....
Just look at the state of my arm previously....
Now for what has been a problem area, the back of my leg...
The improvements are clear to see. My skin is getting better every day and with the end of each flare I see better skin. I am confident that I will heal, although the process is excruciatingly slow and it may take another couple of hundred days before I see anything that resembles normal skin.
I am so grateful for the google support group and the addictedskin site that brought me to this point and helped me to realise that steroid addiction is curable. Kelly who runs the addictedskin site is trying to set up an organisation to help people affected by steroid addiction and has been funding it largely from her own pocket. Please consider donating via the addictedskin website to offeset the costs that are involved in setting up these support and information services. Since she set up her site, she had, to date only received 3 donations, despite the fact that her site has helped thousands of people.
Monday 27 February 2012
Day 99 Products I Use
The flare seems to be subsiding. The skin is less weepy and less raw. This last flare lasted 6 days, so I seem to be at a stage where I flare for a week and then I am calm for a week.
I was re-reading Dr Rapaport's paper and it said that symptoms of withdrawal tend to peak by 4-6 months and then the flares get less and less. I'm not sure what that means for me, as I am almost at 4 months, but my flares seem to be less intense. I do know of some people who thought they were over the worst and then had a huge flare at 4, 5 or 6 months, so I don't know if I can rest easy yet.
I am starting to get an idea of the products that work for me. Everyone is different as regards what they can tolerate on the skin, and one man's medicine is another man's poison, but here are some of my topical steroid withdrawal "must haves":
Antihistamine: I always take an antihistamine at night to lessen he itch. I just use a generic supermarket product, like loratidine or cetirizine, but others have had success with prescription products like Atarax and Zyrtek.
Moisturiser: My skin likes the Body Shop Hemp Hand Protector cream, as it is rich, and great at moisturising very dry areas. I also like Zeoderm by Salcura. It cleared up my daughter's eczema within days, and I have just ordered another bottle from Amazon. I recently got to test the new Olay Total Effects Sensitive cream, which has lovely ingredients like Sea Buckthorn and Pro Vitamin B5, I found that it was well tolerated by my sensitive skin and contained no nasty chemicals. Other steroid withdrawal sufferers have found benefit from pawpaw cream, coconut oil, or the David Hoskins Psoriasis cream. Vaseline is usually well tolerated on even the most sensitive skin and is not absorbed, so forms a barrier on the skin.
Dressings: The very weepy skin areas and wounds require moist wound healing. I use a dressing pad with a layer of plastic to keep the exudate off the skin and apply a thin layer of vaseline to the wound, securing the pad with microporous tape.
Silk Pillowcase/scarf: I love my silk pillowcase and also use it as a wrap around my neck when my neck is oozing. The coolness of the fabric is soothing.
Suitable clothing: Brushed cotton pyjamas at night with socks over my hands to prevent me scratching! A bra that "seperates" to avoid oozing skin in the central chest area. Sometimes I also put a layer of tissue under the bra line to absorb ooze. In the day, I wear T shirts and summer skirts in the house. It is important to wear comfy clothing that can be washed frequently, because they will get greasy from the creams. I tie my hair back off my face.
Epsom Salt: I love my Epsom baths, which were a sanity saver in the early days. Dead sea salt and oatmeal baths are also good. One forum member adds coconut oil to the epsom baths to make it less drying. Epsom salt also adds magnesium to the body, which helps water in the body to penetrate skin cells and hydrate the skin.
Cleanser: Water can feel irritating on a sensitive face. I like Cetaphil, which I can wipe off gently with a cotton wool pad. The Avene high tolerance cleanser is also very good.
Supplements: I like a good basic multivitamin with Omega 3 and 6. I also take selenium and zinc.
Anyone considering withdrawing from steroid creams would do well to formulate a "survival kit" like this if they want to succeed.
I was re-reading Dr Rapaport's paper and it said that symptoms of withdrawal tend to peak by 4-6 months and then the flares get less and less. I'm not sure what that means for me, as I am almost at 4 months, but my flares seem to be less intense. I do know of some people who thought they were over the worst and then had a huge flare at 4, 5 or 6 months, so I don't know if I can rest easy yet.
I am starting to get an idea of the products that work for me. Everyone is different as regards what they can tolerate on the skin, and one man's medicine is another man's poison, but here are some of my topical steroid withdrawal "must haves":
Antihistamine: I always take an antihistamine at night to lessen he itch. I just use a generic supermarket product, like loratidine or cetirizine, but others have had success with prescription products like Atarax and Zyrtek.
Moisturiser: My skin likes the Body Shop Hemp Hand Protector cream, as it is rich, and great at moisturising very dry areas. I also like Zeoderm by Salcura. It cleared up my daughter's eczema within days, and I have just ordered another bottle from Amazon. I recently got to test the new Olay Total Effects Sensitive cream, which has lovely ingredients like Sea Buckthorn and Pro Vitamin B5, I found that it was well tolerated by my sensitive skin and contained no nasty chemicals. Other steroid withdrawal sufferers have found benefit from pawpaw cream, coconut oil, or the David Hoskins Psoriasis cream. Vaseline is usually well tolerated on even the most sensitive skin and is not absorbed, so forms a barrier on the skin.
Dressings: The very weepy skin areas and wounds require moist wound healing. I use a dressing pad with a layer of plastic to keep the exudate off the skin and apply a thin layer of vaseline to the wound, securing the pad with microporous tape.
Silk Pillowcase/scarf: I love my silk pillowcase and also use it as a wrap around my neck when my neck is oozing. The coolness of the fabric is soothing.
Suitable clothing: Brushed cotton pyjamas at night with socks over my hands to prevent me scratching! A bra that "seperates" to avoid oozing skin in the central chest area. Sometimes I also put a layer of tissue under the bra line to absorb ooze. In the day, I wear T shirts and summer skirts in the house. It is important to wear comfy clothing that can be washed frequently, because they will get greasy from the creams. I tie my hair back off my face.
Epsom Salt: I love my Epsom baths, which were a sanity saver in the early days. Dead sea salt and oatmeal baths are also good. One forum member adds coconut oil to the epsom baths to make it less drying. Epsom salt also adds magnesium to the body, which helps water in the body to penetrate skin cells and hydrate the skin.
Cleanser: Water can feel irritating on a sensitive face. I like Cetaphil, which I can wipe off gently with a cotton wool pad. The Avene high tolerance cleanser is also very good.
Supplements: I like a good basic multivitamin with Omega 3 and 6. I also take selenium and zinc.
Anyone considering withdrawing from steroid creams would do well to formulate a "survival kit" like this if they want to succeed.
Saturday 25 February 2012
Day 97 Leg Flare
Still in a flare today, but I'm coping OK. It is nowhere near as bad as my previous flares and I hope that maybe this means I won't have any more bad flares.
I'm still worried about the oozing on my legs, which seems to be neverending. The skin is quite calm in the morning, as I have been lying down in bed, but as the day wears on, my leg hardens and forces ooze out of the wounds on the calf of each leg. I am keeping the wounds covered and moist, but healing seems to have reached a plateau. The back of my right leg is also really raw again.
I'm going to try and keep my feet up today and minimise pressure on my legs. Boring but necessary.
The google group now has 91 members with new ones joining all the time. Soon we will go viral!
I'm still worried about the oozing on my legs, which seems to be neverending. The skin is quite calm in the morning, as I have been lying down in bed, but as the day wears on, my leg hardens and forces ooze out of the wounds on the calf of each leg. I am keeping the wounds covered and moist, but healing seems to have reached a plateau. The back of my right leg is also really raw again.
I'm going to try and keep my feet up today and minimise pressure on my legs. Boring but necessary.
The google group now has 91 members with new ones joining all the time. Soon we will go viral!
Friday 24 February 2012
Day 96 Liz and Jake’s Blog
I haven't been able to update the blog because my son spilled tea on ther computer keyboard!
I have been having a flare since Tuesday, but it has been less severe than previous flares and slightly different as regards symptoms.
My biggest problem is my legs at the moment. They swell up slightly when I stand or sit for too long, so I have to try and lie down as much as I can and keep them elevated. In the evenings, the back of my leg goes hard, and yellow fluid starts pouring out of my leg wounds. The moist healing method is helping though, and I have started dressing both legs to heal the wounds. More keep appearing though.
My neck is oozing again, but not as badly as before. I am hoping that it will calm down when the flare subsides. My face looks pretty raw too. My eyes are still slightly swollen in the morning, but not as bad as the photo I posted on Tuesday. I know each flare leads to better skin, so I am optimistic. I have to be.
On a brighter note, the sun is out here in the UK!!!! I had to take the kids into town after school and it was warm outside, so I was able to bare my arms for about 20 minutes. I really believe that this will help my skin, as Dr Rapaport is a big advocate of sunshine as a healer. The nice thing about the UK climate, is that the sunshine is quite cool and diffused at the moment, so I can build up my tolerance slowly as summer approaches.
I would also like to recommend a great new blog by a fellow skin friend. Liz is recording the progress of her partner Jake as he comes off the steroid creams. You can see their story at:
http://eczemahealing.blogspot.com.au/
The blog is particularly interesting, as Liz is using holistic methods to help Jake, such as vitamin supplements, massage and alternative therapies. I am very interested to see whether these methods will have an impact on his healing time, as very little is known about steroid withdrawal and if we can find a method that speeds healing up, then we will all benefit. She is doing a great job.
Also, the photos on her blog are amazing and well worth a look. It really is a well constructed site.
The other steroid withdrawal blogs are listed down the page on the right. They are all worth reading.
I have been having a flare since Tuesday, but it has been less severe than previous flares and slightly different as regards symptoms.
My biggest problem is my legs at the moment. They swell up slightly when I stand or sit for too long, so I have to try and lie down as much as I can and keep them elevated. In the evenings, the back of my leg goes hard, and yellow fluid starts pouring out of my leg wounds. The moist healing method is helping though, and I have started dressing both legs to heal the wounds. More keep appearing though.
My neck is oozing again, but not as badly as before. I am hoping that it will calm down when the flare subsides. My face looks pretty raw too. My eyes are still slightly swollen in the morning, but not as bad as the photo I posted on Tuesday. I know each flare leads to better skin, so I am optimistic. I have to be.
On a brighter note, the sun is out here in the UK!!!! I had to take the kids into town after school and it was warm outside, so I was able to bare my arms for about 20 minutes. I really believe that this will help my skin, as Dr Rapaport is a big advocate of sunshine as a healer. The nice thing about the UK climate, is that the sunshine is quite cool and diffused at the moment, so I can build up my tolerance slowly as summer approaches.
I would also like to recommend a great new blog by a fellow skin friend. Liz is recording the progress of her partner Jake as he comes off the steroid creams. You can see their story at:
http://eczemahealing.blogspot.com.au/
The blog is particularly interesting, as Liz is using holistic methods to help Jake, such as vitamin supplements, massage and alternative therapies. I am very interested to see whether these methods will have an impact on his healing time, as very little is known about steroid withdrawal and if we can find a method that speeds healing up, then we will all benefit. She is doing a great job.
Also, the photos on her blog are amazing and well worth a look. It really is a well constructed site.
The other steroid withdrawal blogs are listed down the page on the right. They are all worth reading.
Tuesday 21 February 2012
Day 93 (photos)
I have read a lot of posts on the google group from people reporting swollen eyes during steroid withdrawal, but had not experienced it myself.
Until this morning.
I woke up and my eyes were all sticky and crusty. I don't think it is a regular eye infection. I think it is related to the steroid withdrawal, as so many others are experiencing the same symptoms. My actual eyeball is swollen and my eyelids are also swollen and very dry with long cracks in the skin.
Maybe it is my fault for using the mascara a couple of days ago.
As you can see from the photo, my eye is sore and the area around it is puffy. The eyelid is swollen and hooded. The skin on my face looks quite puffy and uneven today, so maybe this is the start of a new flare, I'm not sure.
This is the picture of my leg today, still using the moist wound healing technique. The wound looks paler and looks as if it is healing well, but it is still oozing quite a lot. I am getting similar areas appearing on my other leg, so have sent the husband to the chemist to get some more dressings!
Until this morning.
I woke up and my eyes were all sticky and crusty. I don't think it is a regular eye infection. I think it is related to the steroid withdrawal, as so many others are experiencing the same symptoms. My actual eyeball is swollen and my eyelids are also swollen and very dry with long cracks in the skin.
Maybe it is my fault for using the mascara a couple of days ago.
Monday 20 February 2012
Day 92 (photos)
Wow, I'm on day 92. I really should consider having some kind of party when I get to 100 days!
I am still improving and haven't had a flare in over a week. Last week I spent every day out and about doing activities with the kids and socialising with friends. Yesterday I spent the best part of the day sitting in a hot auditorium, with no adverse effects on my skin, something I could not have contemplated doing a few weeks ago.
I also managed to put on some makeup for the first time since withdrawal started. OK, it was only a slick of mascara and some lip balm, but it felt great and my skin did not react.
I didn't have time to post any photos last week, but the kids are back at school today, so here goes....
Here we have the old familiar "mug shot" which I have been used to posting. There are massive improvements on this photos if you compare it to the "bad flare" picture a couple of weeks ago. My neck area is pink, but not dry or flaky and the oozing has finally stopped. Last night was the first night where I didn't have to sleep with tissue stuffed down my bra.
A few weeks ago I couldn't move my neck and the skin was stretched tight, but now I have good movement and flexibility. I feel like this area may be healed in a few months.
Again, massive improvement to the backs of my legs. A week or so ago, I could hardly walk, my legs were swollen, cracked and bleeding. Climbing stairs was like scaling Everest! Now, the backs of my legs are smoother. The swelling has gone and I can walk normally. Please look back at previous photos to appreciate the big improvement here.
This is the photo that I want to spend some time talking about, and will be monitoring over the next few days.
I have mentioned in previous posts about a stubborn weeping patch of skin on my calf that has been troubling me for several weeks now. I thought that if I let the air get to it, that it would heal, but it just continued to worsen. Eventually, it did form a thin papery scab, but the scab tore off one night and the wound remained.
I put my problem to the support group, to see if anyone could advise me. One of the members, who is training to be a nurse, suggested a method called "moist wound healing". I googled the term and found many interesting articles, supporting the fact that wounds heal quicker in a moist environment that if they are left to form a scab.
I wiped the wound clean and put on a thin layer of vaseline before applying a dressing and securing it with microporous tape. I would regularly change the dressing and apply more vaseline.
The above photo is my progress after using this method for 2 days. The wound is paler and is healing well. It is oozing less, and I am not having to change the dressing so frequently. I am going to take regular photos to document the healing process.
Another thing that I have found useful in withdrawal is herbal tea at night. The one I use is called "sleep easy" by Clipper, and it contains cinnamon, chamomile, lemon balm and valerian. It knockes me out at night and makes me itch less. I am also drinking Twinings cherry and cinnamon tea during the day, as it is also a relaxing tea and makes me less itchy. It is worth looking out for these effective ingredients in choosing a herbal tea to relieve symptoms.
I am still improving and haven't had a flare in over a week. Last week I spent every day out and about doing activities with the kids and socialising with friends. Yesterday I spent the best part of the day sitting in a hot auditorium, with no adverse effects on my skin, something I could not have contemplated doing a few weeks ago.
I also managed to put on some makeup for the first time since withdrawal started. OK, it was only a slick of mascara and some lip balm, but it felt great and my skin did not react.
I didn't have time to post any photos last week, but the kids are back at school today, so here goes....
A few weeks ago I couldn't move my neck and the skin was stretched tight, but now I have good movement and flexibility. I feel like this area may be healed in a few months.
I have mentioned in previous posts about a stubborn weeping patch of skin on my calf that has been troubling me for several weeks now. I thought that if I let the air get to it, that it would heal, but it just continued to worsen. Eventually, it did form a thin papery scab, but the scab tore off one night and the wound remained.
I put my problem to the support group, to see if anyone could advise me. One of the members, who is training to be a nurse, suggested a method called "moist wound healing". I googled the term and found many interesting articles, supporting the fact that wounds heal quicker in a moist environment that if they are left to form a scab.
I wiped the wound clean and put on a thin layer of vaseline before applying a dressing and securing it with microporous tape. I would regularly change the dressing and apply more vaseline.
The above photo is my progress after using this method for 2 days. The wound is paler and is healing well. It is oozing less, and I am not having to change the dressing so frequently. I am going to take regular photos to document the healing process.
Another thing that I have found useful in withdrawal is herbal tea at night. The one I use is called "sleep easy" by Clipper, and it contains cinnamon, chamomile, lemon balm and valerian. It knockes me out at night and makes me itch less. I am also drinking Twinings cherry and cinnamon tea during the day, as it is also a relaxing tea and makes me less itchy. It is worth looking out for these effective ingredients in choosing a herbal tea to relieve symptoms.
Thursday 16 February 2012
Day 88 Online Support
Things still continue to improve. I am sleeping better and have lots of energy. I feel "normal", even though my skin is a little flaky in some places.
The skin on my arms, legs and torso is pretty good, just a little dry all over and red in the flexures on my kneees and elbows, but I have full movement and no swelling currently. My neck is dry and powdery but tolerable. My face has blotchy areas, but is not so red that I am embarrassed to go out in public. The skin is not uncomfortable.
I know that the next flare could come at any time, but I also know that after each flare my skin improves better than ever, so the flares are an inevitable part of healing.
The google support group is going from strength to strength, with more new members finding us every day. Many members are now almost completely healed, so are able to help the new members understand what they face with withdrawals. It is great to read the tesimonies of those who have come through the process and are now healed and have normal skin.
The skin on my arms, legs and torso is pretty good, just a little dry all over and red in the flexures on my kneees and elbows, but I have full movement and no swelling currently. My neck is dry and powdery but tolerable. My face has blotchy areas, but is not so red that I am embarrassed to go out in public. The skin is not uncomfortable.
I know that the next flare could come at any time, but I also know that after each flare my skin improves better than ever, so the flares are an inevitable part of healing.
The google support group is going from strength to strength, with more new members finding us every day. Many members are now almost completely healed, so are able to help the new members understand what they face with withdrawals. It is great to read the tesimonies of those who have come through the process and are now healed and have normal skin.
Wednesday 15 February 2012
Day 87 Good Days
87 days in and my life is beginning to get some semblance of normality back.
Since my one-day flare on Saturday, the skin has been rapidly improving, to the point that I can get out and do things. I took the kids bowling yesterday and visited family. Today we are going to the cinema and for a meal out. Steroid withdrawal isn't all pain and suffering, there are bright spots in between.
The skin overall is definitely less blotchy, with hardly any weeping areas. When I sleep, I have a little fluid from the neck, but it dries to a powder in the morning, so is not causing me any major issues. Skin generally feels softer and smoother all over.
I will try and post some photos next week when the kids are back at school.
Since my one-day flare on Saturday, the skin has been rapidly improving, to the point that I can get out and do things. I took the kids bowling yesterday and visited family. Today we are going to the cinema and for a meal out. Steroid withdrawal isn't all pain and suffering, there are bright spots in between.
The skin overall is definitely less blotchy, with hardly any weeping areas. When I sleep, I have a little fluid from the neck, but it dries to a powder in the morning, so is not causing me any major issues. Skin generally feels softer and smoother all over.
I will try and post some photos next week when the kids are back at school.
Tuesday 14 February 2012
Day 86 Getting the Lymph Moving
Feeling pretty good today. The wet wound on my leg has scabbed over with a papery thin scab, so I am hoping it will heal.
I have been reading a lot about lymph and its role in the body. Basically, it is a fluid that transports all the nasty stuff and toxins away from the cells. Unlike blood, which is pumped around the body by the heart, lymph has no pump and relies on body movement to get moving around. This means that people who live a sedentary lifestyle often feel very sick because the lymph is not moving efficiently.
One of the best ways to get the lymph moving is by getting a small trampoline and bouncing on it, as this has the effect of pumping the lymph around the body. Try googling "lymph rebounding" for some great, well written articles on the subject.
As I have no trampoline, I have put a large springy cushion from the sofa onto the floor and spent 5 minutes bouncing on it to get my lymph flowing and prevent this horrible edema in my legs.
Some days I swear I am going insane, but at least this is a fun method to keep healthy!
I have been reading a lot about lymph and its role in the body. Basically, it is a fluid that transports all the nasty stuff and toxins away from the cells. Unlike blood, which is pumped around the body by the heart, lymph has no pump and relies on body movement to get moving around. This means that people who live a sedentary lifestyle often feel very sick because the lymph is not moving efficiently.
One of the best ways to get the lymph moving is by getting a small trampoline and bouncing on it, as this has the effect of pumping the lymph around the body. Try googling "lymph rebounding" for some great, well written articles on the subject.
As I have no trampoline, I have put a large springy cushion from the sofa onto the floor and spent 5 minutes bouncing on it to get my lymph flowing and prevent this horrible edema in my legs.
Some days I swear I am going insane, but at least this is a fun method to keep healthy!
Monday 13 February 2012
Day 85 Article on Steroids and Diabetes
Had a mini flare on Saturday which had me laid up on the setee again, shivering, fatigued and generally feeling awful, but I was feeling better by Sunday, although the skin on my face and neck is very dry.
The patch on my leg that I took photos of a couple of days ago is still causing me grief. The steroid withdrawal causes edema and I have mild edema in my legs which is pushing fluid out through my skin. This has caused a wet patch on my leg which will not heal. Dressings applied to the area became soaked through.
After researching "leg edema" online, I saw that raising the legs above the level of the heart is a common remedy for this condition, so I managed to lie on the setee with my legs swung over the back of the setee. Miraculously, this semed to dry up the wet wound, as it relieved the pressure that was forcing the fluid through the skin. I have now applied a dressing to the area to keep it clean and free of bacteria.
I am truly shocked at what the steroid creams have done to me. There is no doubt that they are powerful drugs, although there seems to be little regulation concerning appropriate use. Interestingly, I found this article online about the link between steroid use and diabetes:
http://www.dailymail.co.uk/health/article-1361652/How-steroids-diabetes.html
The patch on my leg that I took photos of a couple of days ago is still causing me grief. The steroid withdrawal causes edema and I have mild edema in my legs which is pushing fluid out through my skin. This has caused a wet patch on my leg which will not heal. Dressings applied to the area became soaked through.
After researching "leg edema" online, I saw that raising the legs above the level of the heart is a common remedy for this condition, so I managed to lie on the setee with my legs swung over the back of the setee. Miraculously, this semed to dry up the wet wound, as it relieved the pressure that was forcing the fluid through the skin. I have now applied a dressing to the area to keep it clean and free of bacteria.
I am truly shocked at what the steroid creams have done to me. There is no doubt that they are powerful drugs, although there seems to be little regulation concerning appropriate use. Interestingly, I found this article online about the link between steroid use and diabetes:
http://www.dailymail.co.uk/health/article-1361652/How-steroids-diabetes.html
Friday 10 February 2012
Day 82 Others Have Healed
Things are tolerable and stable; no better or worse.
I was able to go out last night. It is great to be able to socialise and connect with friends, although one of my friends wondered why I was putting myself through this hell.
The answer to that is because I believe I will heal.
Trust me, if I didn't believe that, I wouldn't be doing this and I would be back on the steroid creams, but just lately I have read a few testimonies of people who have been through the hell and come out the other side, healed and able to live normal lives.
Knowing that others have gone through withdrawal and are now healed gives me hope that I will too.
I was able to go out last night. It is great to be able to socialise and connect with friends, although one of my friends wondered why I was putting myself through this hell.
The answer to that is because I believe I will heal.
Trust me, if I didn't believe that, I wouldn't be doing this and I would be back on the steroid creams, but just lately I have read a few testimonies of people who have been through the hell and come out the other side, healed and able to live normal lives.
Knowing that others have gone through withdrawal and are now healed gives me hope that I will too.
Thursday 9 February 2012
Day 81 Dead Sea Salts Review
I tried bathing in Dead Sea Salts (Spa Magik) instead of my usual epsom baths to see if they were any better.
I think I prefer the epsom as it is very gentle and soothing. I found that the Dead Sea Salts were slightly stinging on my skin and that I needed to use quite a lot to get the skin softening properties of the salts.
I would use them again, but epsom for me, is still the best thing to use in the bath.
I think I prefer the epsom as it is very gentle and soothing. I found that the Dead Sea Salts were slightly stinging on my skin and that I needed to use quite a lot to get the skin softening properties of the salts.
I would use them again, but epsom for me, is still the best thing to use in the bath.
Wednesday 8 February 2012
Day 80 (photos)
I have been quite active during my break between flares and was even able to go out last night. My skin is generally calm, but still not "right".
My neck was oozing clear fluid all night, which was unpleasant, but I still wouldn't consider myself to be in another full blown flare yet. The oozing may be a sign that the next flare is on its way though.
As I have mentioned before, I have some areas on my body that seem deeply damaged. These areas are a bright red colour and look very raw, as if all the skin has gone. The patches weep non stop and occasionaly crust over with a paper thin layer of skin, which flakes away quickly to reveal the sore skin again. The raw skin looks very odd close up. You can see the vessicles, pit and wells in the skin full of fluid. I think that these areas will take many months to heal. I keep these areas clean at all times to avoid infection. the last thing I want is cellulitis complicating matters.
This is the raw area on my elbow crook. I would have liked the camera to have had a better close up function, as you cannot make out how bad it is from the photo. The skin in this area has been like this since pretty much the beginning of withdrawal and is still raw and wet. I think it will take a long time to heal.
This is my bad area on my leg. I posted a photo of this area a couple of days ago. It is very raw and again, the photo does not really do justice to how bad it looks. This area does not dry up no matter what I put on it and it is very itchy. When I have a bath, it opens the wound up again and makes it ooze even more.
These raw areas really concern me. They seem much more stubborn than the other areas of reddened skin. My biggest worry is that these areas will grow and spread. They seem localised for now, but I have had similar areas start appearing on my other leg and in my leg creases. I try and keep the areas exposed to air when I can. I may avoid having a bath for a couple of days to see if it helps dry the areas out.
My neck was oozing clear fluid all night, which was unpleasant, but I still wouldn't consider myself to be in another full blown flare yet. The oozing may be a sign that the next flare is on its way though.
As I have mentioned before, I have some areas on my body that seem deeply damaged. These areas are a bright red colour and look very raw, as if all the skin has gone. The patches weep non stop and occasionaly crust over with a paper thin layer of skin, which flakes away quickly to reveal the sore skin again. The raw skin looks very odd close up. You can see the vessicles, pit and wells in the skin full of fluid. I think that these areas will take many months to heal. I keep these areas clean at all times to avoid infection. the last thing I want is cellulitis complicating matters.
These raw areas really concern me. They seem much more stubborn than the other areas of reddened skin. My biggest worry is that these areas will grow and spread. They seem localised for now, but I have had similar areas start appearing on my other leg and in my leg creases. I try and keep the areas exposed to air when I can. I may avoid having a bath for a couple of days to see if it helps dry the areas out.
Tuesday 7 February 2012
Day 79 Socks on My Hands
I'm enjoying calmer skin at the moment, with many areas of white, clear skin. The oozing is getting better, with just minimal oozing on my neck last night and a little on my leg, although I did use the Domeboros before going to bed.
I wear cotton pjyama bottoms in bed to stop myself scratching the back of my legs and I also wear socks over my hands.
The skin is bearable and I am going to be able to function normally today, without my skin stopping me.
I wear cotton pjyama bottoms in bed to stop myself scratching the back of my legs and I also wear socks over my hands.
The skin is bearable and I am going to be able to function normally today, without my skin stopping me.
Monday 6 February 2012
Day 78 The End of a Short Flare
Yesterday finally saw the end of flare number 4, which was short, but very uncomfortable, due to the sheer amount of oozing coming from my legs and neck. I woke up yesterday and felt a lot better, with most of the oozing having dried up and turned powdery. Even the stubborn patch on my leg had eventually crusted over.
Happily, this meant that I was able to have a pretty normal day yesterday. I went out for a couple of hours and was also able to catch up on chores in the house and cook a roast dinner without too much hassle, and I was also able to walk a lot better, as the edema has gone down in my legs. I do try and raise them whenever resting though, and with edema you have to make sure that you raise your legs above the level of your heart.
The redness has gone down a lot, but my skin still looks patchy. I have decided that I can't let myself be too bothered about what other people think of my appearance, otherwise I wouldn't do anything. It is hard though, especially when people make thoughtless comments like "Your skin looks bad today". I know it looks bad, OK? I don't want to be reminded of it when I am having a conversation! I have a friend who is particularly prone to putting things like this in her conversation, and it makes me want to avoid speaking to her, which is a shame, but I feel really self concious when I talk to people. I also hate seeing beautiful people on TV!
I plan to enjoy this end of flare period, hoping that I will get a good gap between this and flare 5. Flare 4 was the shortest flare yet, so with a bit of luck, I will get about a week of good skin now before the next one hits.
Happily, this meant that I was able to have a pretty normal day yesterday. I went out for a couple of hours and was also able to catch up on chores in the house and cook a roast dinner without too much hassle, and I was also able to walk a lot better, as the edema has gone down in my legs. I do try and raise them whenever resting though, and with edema you have to make sure that you raise your legs above the level of your heart.
The redness has gone down a lot, but my skin still looks patchy. I have decided that I can't let myself be too bothered about what other people think of my appearance, otherwise I wouldn't do anything. It is hard though, especially when people make thoughtless comments like "Your skin looks bad today". I know it looks bad, OK? I don't want to be reminded of it when I am having a conversation! I have a friend who is particularly prone to putting things like this in her conversation, and it makes me want to avoid speaking to her, which is a shame, but I feel really self concious when I talk to people. I also hate seeing beautiful people on TV!
I plan to enjoy this end of flare period, hoping that I will get a good gap between this and flare 5. Flare 4 was the shortest flare yet, so with a bit of luck, I will get about a week of good skin now before the next one hits.
Friday 3 February 2012
Day 75 ( bad flare photos)
Flare 4 is very nasty in severity. A red rash is covering a large percentage of my body and all of the previously healed areas are turning red and blotchy. It feels like everything is being undone.
I finally managed to get the kids back to school after the flu, so I have been able to take some photos today, although they are quite depressing:
This picture is quite a contrast to the previous photo of my neck, which had areas of good skin. As you can see, the skin on this picture is very inflammed and flaky. When I sleep, this area goes very red and gets wet, and in the morning it is extremely dry and sore. I wonder how it is ever going to improve. In the day, I wear tops that expose this area to the air to dry it out. it is very irritaring to have it covered and covering it causes the skin to weep. If I go out though, I wear a high-necked fleece over it to cover it up. The UK is currently very cold and the bad weather doesn't do skin like this any favours.
This is a troublesome patch of skin on my left calf that refuses to dry out. I have tried most things on it but it oozes constantly and is raw, as you can see, with a lot of deep damage. I get worried that it will get infected, but I keep the area very clean. One of the members of the support group sent me some Domeboros, which you can't get here in the UK, so I am going to try the Domeboros on this area later today.
The backs of my legs are still raw, but I can walk a bit better, and they are responding to the Hemp cream I am using, even if it just lubricates the area enough for me to walk. This area is very uncomfortable when it dries out, so I need to keep it moisturised. In the evenings, my right knee swells up a little and I have to raise it up.
Up to this point, my face had been doing OK, but it has gone quite blotchy in the last couple of days, especially round my chin and mouth, which has been a step backwards. You can also see in this picture how bad my neck is, too. Underneath the blotches, you can see how pale my natural skin colour is, so when my face gets blotchy, it really stands out! I think I will stick a paper bag over my head when I go and fetch the kids from school today!
The pictures above are my "morning skin", which is when my skin is actually at its best(!). I will try and get around to talking some photos that show how bad it gets in the evening, because it is a lot redder than this in the evenings and the contrast between the red skin and the white skin is even more pronounced.
My energy levels continue to plummet. I was doing some housework, changing the sheets on the bed and hoovering (all the dead skin!). When I had finished, my whole body was shaking and I felt absolutely wiped out, as if I had been running a marathon. I attribute this to adrenal fatigue. my poor adrenal glands have taken a fair pounding due to all the artificial cortisone I have put into my body over the years, and they need to get used to working properly again.
We read encouraging posts on the support group from people who are healed after 1.5 years and now have their lives back. Whilst it is very encouraging, 1.5 years seems a long way away for me, only 75 days into withdrawal. My mantra is to take each day at a time, and every day that goes past is another one under my belt.
I finally managed to get the kids back to school after the flu, so I have been able to take some photos today, although they are quite depressing:
The pictures above are my "morning skin", which is when my skin is actually at its best(!). I will try and get around to talking some photos that show how bad it gets in the evening, because it is a lot redder than this in the evenings and the contrast between the red skin and the white skin is even more pronounced.
My energy levels continue to plummet. I was doing some housework, changing the sheets on the bed and hoovering (all the dead skin!). When I had finished, my whole body was shaking and I felt absolutely wiped out, as if I had been running a marathon. I attribute this to adrenal fatigue. my poor adrenal glands have taken a fair pounding due to all the artificial cortisone I have put into my body over the years, and they need to get used to working properly again.
We read encouraging posts on the support group from people who are healed after 1.5 years and now have their lives back. Whilst it is very encouraging, 1.5 years seems a long way away for me, only 75 days into withdrawal. My mantra is to take each day at a time, and every day that goes past is another one under my belt.
Wednesday 1 February 2012
Day 73 Calamine
The oozing is relentless and my whole body feels wet to the touch. I am in a lot of pain and feel like I have been stung by a swarm of bees!
I made the mistake of falling asleep on the setee this afternoon. When I woke up, my skin was stuck to the blankets and I had to rip the blanket off like a sticking plaster. My clothes are sticking to my skin, especially around my neck and it feels hard to get clean.
Calamine lotion did not work. It just felt like a blob of clay on the back of my legs as it dried hard and made my legs really itchy and uncomfortable. My skin is so sensitive at the moment, it will not tolerate any kind of cream and even touching the skin makes it ooze fluid.
Days like this are hard, as I still have to do daily activities. Two of my kids are off school with the flu, which is really bad timing!
If I focus on here and now, I will go mad. I keep focused on the future, and lovely smooth skin. I know I will get a break soon because I had a good week last week and I will again. I'm hoping this is going to be a short flare. Be positive.
Lots of new people are finding the Google support group. We are getting bigger every day. I am so glad for these people that they have found the answer and can get free from these damaging creams. I know withdrawal is hell, but there is light at the end of the tunnel and we have to focus on that.
This is temporary.
I made the mistake of falling asleep on the setee this afternoon. When I woke up, my skin was stuck to the blankets and I had to rip the blanket off like a sticking plaster. My clothes are sticking to my skin, especially around my neck and it feels hard to get clean.
Calamine lotion did not work. It just felt like a blob of clay on the back of my legs as it dried hard and made my legs really itchy and uncomfortable. My skin is so sensitive at the moment, it will not tolerate any kind of cream and even touching the skin makes it ooze fluid.
Days like this are hard, as I still have to do daily activities. Two of my kids are off school with the flu, which is really bad timing!
If I focus on here and now, I will go mad. I keep focused on the future, and lovely smooth skin. I know I will get a break soon because I had a good week last week and I will again. I'm hoping this is going to be a short flare. Be positive.
Lots of new people are finding the Google support group. We are getting bigger every day. I am so glad for these people that they have found the answer and can get free from these damaging creams. I know withdrawal is hell, but there is light at the end of the tunnel and we have to focus on that.
This is temporary.
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