Gentle hugs and warm thoughts,
Dawn
Wednesday, August 20, 2014
My sweet guardian angels
Gentle hugs and warm thoughts,
Dawn
Picture update
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| Month 4: Isn't that gnarly? Badassness |
 | |||||||
| Month 5. A month long break of no pains and manageable skin!!! |
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| Month 5: Redness on chest area cleared... for now. |
Now that the history of all this is stated, I can now vent...
Sometimes I try and remember my day to days for the first 4 months of withdrawal but it's hard to relive. I think because it was so traumatizing my memory of it gets hazy. When I do remember from pictures, it sometimes makes me want to puke because of how hard it was. I experienced mostly all of the tsw symptoms everyday, especially for those first months. I heard from others that the initial months are the toughest. It felt like a nightmare I just couldn't wake up from. Can you imagine not being comfortable in your own skin every day?
I cannot believe that as a child my eczema started on minor areas like the crooks of my arms and back of my knees. Doctors told my trusting parents to put this steroid cream to take it away. Which it did but only for a while. But using it for far longer than I should've, only prolonged my eczema and caused it to spread to other places. It spread to my face. So then I was prescribed something mild for the face and something stronger for the body. The doctors believed if it keeps coming back, anteing up the dosage will surely make it disappear. Doing so did but only for a limited time. My eczema always came back. I was not getting down to the underlying issues. Possibly diet, environmental factors. I do believe in hindsight I probably had food sensitivities which are different from food allergies.
Why didnt' the doctors tell thousands of us that we should only use it for a certain amount of time? Ive seen so many of them in my life and not one told me about my body possibly becoming dependent on them. That's where the relationship between western medicine and pharmaceutical companies make me sick. It's as if they didn't want to disclose this type of information because this is how doctors make their money. Pushing the meds. And now sometime later when I tell my doctors about this most of them deny it or don't believe this is what's happening to me. They think it is just severe eczema and something like prednisone will do the trick. NO THANK YOU. I am never touching oral or topical steroids again!
Even thinking back to the time I was in college and was no longer on my dad's medical coverage. My face started flaring every so often and it didn't seem like normal eczema. It was red, weepy, flaky, sometimes swollen, and would repeat itself every so often. And get this, I was not using steroid creams because I was no longer covered. So for a couple years my face was going through a withdrawal and I didn't even know it! When I got coverage and got more steroid creams, it didn't seem to really work anymore. It was always a temporary fix and did not feel right so I decided to stop relying on them. In time my skin was glowing and healthy and I never worried about it. I had typical eczema breakouts but they were totally manageable. I never worried about it. But eating healthy and yoga for 7 years seem to make me believe that was all I needed! I just wish I stopped using steroids then. It's okay. I'm 6 months into TSW, and that is 6 months I never have to relive again!
Sadly I am not the only one. There are teenagers, adults, mothers, fathers, children, and even babies that have to go through this. I hear their stories, they bring in concrete research and papers of TSA/RSS, and most of the doctors still don't agree. If this isn't real, then why do thousands of people experience the SAME symptoms?! I know this is not an epidemic but there are still way too many people suffering for nothing. And that in itself should make this condition valid in the medical community.*sigh... That fight is for another time, another day. Let's get to healing.
If anyone decides to stop all topical/oral/injections of steroid use, I would recommend getting your GP or find a GP who will support your decision and who won't try and push you into using steroids. That way they can monitor you or your child and you can get blood tests if things don't feel right. I wouldn't recommend seeing a dermatologist because 95% of them will insist that steroids is your only hope. Even if they tell you there are non-steroidal creams, most of them still have rebound effects. Support is also needed to get through this. There are the ITSAN and TSW facebook forums where I met incredibly brave individuals that I will never forget. These forums allows you to connect with other people going through the same thing. We all have notes to share and everyone is so friendly and compassionate. Definitely join the forums. Also, you have to understand that what might work for someone may not work for you. And also we are not trained physicians so make sure you run recommendations by a GP and just do the research. Learn your body. Know your body. Listen to your body.
There are many people that have stopped steroid creams cold turkey, put in the time, and came out on the other side with normal healthy skin. Time heals all wounds.
love n light,
Dawn
I cannot believe that as a child my eczema started on minor areas like the crooks of my arms and back of my knees. Doctors told my trusting parents to put this steroid cream to take it away. Which it did but only for a while. But using it for far longer than I should've, only prolonged my eczema and caused it to spread to other places. It spread to my face. So then I was prescribed something mild for the face and something stronger for the body. The doctors believed if it keeps coming back, anteing up the dosage will surely make it disappear. Doing so did but only for a limited time. My eczema always came back. I was not getting down to the underlying issues. Possibly diet, environmental factors. I do believe in hindsight I probably had food sensitivities which are different from food allergies.
Why didnt' the doctors tell thousands of us that we should only use it for a certain amount of time? Ive seen so many of them in my life and not one told me about my body possibly becoming dependent on them. That's where the relationship between western medicine and pharmaceutical companies make me sick. It's as if they didn't want to disclose this type of information because this is how doctors make their money. Pushing the meds. And now sometime later when I tell my doctors about this most of them deny it or don't believe this is what's happening to me. They think it is just severe eczema and something like prednisone will do the trick. NO THANK YOU. I am never touching oral or topical steroids again!
Even thinking back to the time I was in college and was no longer on my dad's medical coverage. My face started flaring every so often and it didn't seem like normal eczema. It was red, weepy, flaky, sometimes swollen, and would repeat itself every so often. And get this, I was not using steroid creams because I was no longer covered. So for a couple years my face was going through a withdrawal and I didn't even know it! When I got coverage and got more steroid creams, it didn't seem to really work anymore. It was always a temporary fix and did not feel right so I decided to stop relying on them. In time my skin was glowing and healthy and I never worried about it. I had typical eczema breakouts but they were totally manageable. I never worried about it. But eating healthy and yoga for 7 years seem to make me believe that was all I needed! I just wish I stopped using steroids then. It's okay. I'm 6 months into TSW, and that is 6 months I never have to relive again!
Sadly I am not the only one. There are teenagers, adults, mothers, fathers, children, and even babies that have to go through this. I hear their stories, they bring in concrete research and papers of TSA/RSS, and most of the doctors still don't agree. If this isn't real, then why do thousands of people experience the SAME symptoms?! I know this is not an epidemic but there are still way too many people suffering for nothing. And that in itself should make this condition valid in the medical community.*sigh... That fight is for another time, another day. Let's get to healing.
If anyone decides to stop all topical/oral/injections of steroid use, I would recommend getting your GP or find a GP who will support your decision and who won't try and push you into using steroids. That way they can monitor you or your child and you can get blood tests if things don't feel right. I wouldn't recommend seeing a dermatologist because 95% of them will insist that steroids is your only hope. Even if they tell you there are non-steroidal creams, most of them still have rebound effects. Support is also needed to get through this. There are the ITSAN and TSW facebook forums where I met incredibly brave individuals that I will never forget. These forums allows you to connect with other people going through the same thing. We all have notes to share and everyone is so friendly and compassionate. Definitely join the forums. Also, you have to understand that what might work for someone may not work for you. And also we are not trained physicians so make sure you run recommendations by a GP and just do the research. Learn your body. Know your body. Listen to your body.
There are many people that have stopped steroid creams cold turkey, put in the time, and came out on the other side with normal healthy skin. Time heals all wounds.
love n light,
Dawn
My body is my temple and I will give it love...
I have stumbled onto something life challenging not only for my health but for my mental and emotional well being. For years, I had no idea my body was dependent on topical steroid creams and ever since I was a kid with mild eczema, I have been slathering it on my face and parts of my body. That is what all my doctors told my mom to do. So we listened. And when I was 18 going to dermatology appointments, they told me the same as well. Little did we know that you are definitely not supposed to use steroid creams on the same area for more than two weeks. TWO WEEKS. Otherwise your body can become dependent on it and other side effects like adrenal suppression, atrophy, and thinning of the skin can occur. Doctors never told me this. I take that back. They told me when I kept expressing concern of steroid use that the only side effect would be thinning of the skin. But never did they tell me how detrimental it could be if my body starts needing it.
This is something I have been battling for a big chunk of my life. My eczema got worse after I hit puberty. I was always ashamed of this condition and never wanted anyone to know. When I was in middle school to high school, it definitely turned me inward and I knew it was something I needed to face one day. After years and years of struggling just to keep my eczema at bay, I realize now I've been using it cumulatively for over 10 years! I did have some good years with great skin! From the years 2006-2013, I no longer wanted to use steroids because I figured that couldn't be good for my skin. So I stopped using it and soon my skin was glowing. I practiced bikram and vinyasa yoga for about 7 years, I was eating 80% fruits, veggies, meats, nuts, grains, drinking nothing but water, ate more organic than processed foods, and stopped eating fast food all together. Of course I do love food, anyone that knows me knows ya girl can EAT (haha I don't believe in deprivation). I ate good and sometimes I ate bad but nonetheless for those 7 years, I never felt happier with my skin!!
In July of 2013, I left California and moved to the Philadelphia area for a new experience and simply for love :) I was sad and knew I'd miss my amazing family and friends but this was what I wanted! The first few months were a blast. No skin issues. But then my eczema came back after all these years and with a vengeance. I started getting red marks down my neck (was not rashy and didn't look like normal eczema), it appeared on my arms and I had weekly-- red, dry, flaky skin on my face. I believe certain environmental factors triggered my body to work extra hard and since I was rarely using steroid creams, My body didn't sufficiently have enough to keep my skin at bay. Steroid creams basically suppress your blood vessels, which also affect your adrenal glands. It produces the cortisol hormone that your body is supposed to naturally produce. So if cumulatively I have about 10+ years of steroids in my system, you bet my body started withdrawing in a new environment that it was not familiar with!
For months my fiance and I tried everything. Hypoallergenic materials. Filters, humidifiers, lotions, creams, blood tests, seen allergists... nothing really helped, nothing was wrong with my health. My tests were all good and that made it so perplexing. When I realized I had an tube of desonide cream (topical steroid) , I started using it every couple days for about a month. The rashes would get better quickly but returned after a couple days.
That is when my boyfriend found ITSAN.org (International Topical Steroid Awareness Network) and my heart sunk. I realized I had to stop using steroids. Plain and simple. Easy enough. Okay.... no.... faaaaar from an easy withdrawal. Thousands of people are apart of an online community called ITSAN and are all in this hellish journey but at different stages and severities. I believe that even if I am going through all the terrible symptoms, ITSAN saved my life. Because once I flush all the steroids out of my body, once my body learns to rework itself on its own, I believe I will be a much healthier person than I was on topical steroids. And here's hoping my eczema will be gone for good.
Symptoms of TSW (topical steroid withdrawal) collected by Stephanie of Home Apothecary:
* Intense redness that can cover the entire body at times
* Red “sleeves” on limbs
* Blistering and cracking of skin
* Skin that radiates heat, blisters from heat; ice/cold water therapy needed
* Raw skin that is tremendously painful
* Skin that tears easily when scratched, thin skin
* Skin burns in water during certain stages
* Extreme shedding of skin
* Continual intense itching throughout most every stage – described as “to the bone”
* Edema (swelling of body parts) e.g. legs, hands, feet, ankles
* Stinging sensation, nerve pain
* Sticky/watery ooze from pores with a metallic/odd smell:
o Serous Exudate = a fluid with a high content of protein and cellular debris which has escaped from blood vessels and has been deposited in tissues or on tissue surfaces, usually as a result of inflammation.
* Change in body odor
* Skin that turns an odd “purple” color during certain stages
* Skin that thickens / wrinkles during certain stages, “elephant skin”
* Inability to regulate body temperature
* Inability to sweat, then in later stages sweating profusely
* Chills, shivering
* Alopecia (hair loss) on all parts of the body – e.g. head, eyebrows
* Swollen eyes / dry eyes / itchy eyes
* Eye sight changes / blurry vision / steroid induced cataracts
* Swollen lymph nodes – most common in groin and head, but can be all over body
* Joint pain
* Insomnia
* Loss of appetite / weight loss
* Diarrhea / constipation / nausea
* Adrenal fatigue
* Loss of energy / exhaustion
* Depression / anxiety / irritability / moodiness / panic attacks
* Mental “fog” / inability to concentrate
* Recurrent skin infections; impetigo / staph / herpeticum
* Skin bumps, pustules, lesions, blisters
* Skin discoloration
* Changing nail color, peeling nails and nail ridges; also nail bed infections
* Low libido
* Change in menses/menstrual cycle
* Steroid induced warts
* False allergies / high IgE’s
* Initial blood test results that lead to suspected serious conditions/syndromes/diagnoses that are ruled out following further tests/examinations
I am 6 months into this withdrawal and I've probably experienced 90% of the aforementioned symptoms. On that sh**** note, here are some images during my detox..
My TSW emergency kit:
Vitamins/Supplements
I want to make this so very clear. This health condition is not your ordinary eczema case where the rashes are just itchy and uncomfortable. Steroid-induced eczema (particularly when detoxing from it) is HELL. In all my life, I have never gone through anything like this before. Simple atopic eczema?! That's nothing compared to topical steroid withdrawal. This is REAL. And all I can do is take it one day at a time. Moment to moment... waiting for a break.
This is something I have been battling for a big chunk of my life. My eczema got worse after I hit puberty. I was always ashamed of this condition and never wanted anyone to know. When I was in middle school to high school, it definitely turned me inward and I knew it was something I needed to face one day. After years and years of struggling just to keep my eczema at bay, I realize now I've been using it cumulatively for over 10 years! I did have some good years with great skin! From the years 2006-2013, I no longer wanted to use steroids because I figured that couldn't be good for my skin. So I stopped using it and soon my skin was glowing. I practiced bikram and vinyasa yoga for about 7 years, I was eating 80% fruits, veggies, meats, nuts, grains, drinking nothing but water, ate more organic than processed foods, and stopped eating fast food all together. Of course I do love food, anyone that knows me knows ya girl can EAT (haha I don't believe in deprivation). I ate good and sometimes I ate bad but nonetheless for those 7 years, I never felt happier with my skin!!
In July of 2013, I left California and moved to the Philadelphia area for a new experience and simply for love :) I was sad and knew I'd miss my amazing family and friends but this was what I wanted! The first few months were a blast. No skin issues. But then my eczema came back after all these years and with a vengeance. I started getting red marks down my neck (was not rashy and didn't look like normal eczema), it appeared on my arms and I had weekly-- red, dry, flaky skin on my face. I believe certain environmental factors triggered my body to work extra hard and since I was rarely using steroid creams, My body didn't sufficiently have enough to keep my skin at bay. Steroid creams basically suppress your blood vessels, which also affect your adrenal glands. It produces the cortisol hormone that your body is supposed to naturally produce. So if cumulatively I have about 10+ years of steroids in my system, you bet my body started withdrawing in a new environment that it was not familiar with!
For months my fiance and I tried everything. Hypoallergenic materials. Filters, humidifiers, lotions, creams, blood tests, seen allergists... nothing really helped, nothing was wrong with my health. My tests were all good and that made it so perplexing. When I realized I had an tube of desonide cream (topical steroid) , I started using it every couple days for about a month. The rashes would get better quickly but returned after a couple days.
That is when my boyfriend found ITSAN.org (International Topical Steroid Awareness Network) and my heart sunk. I realized I had to stop using steroids. Plain and simple. Easy enough. Okay.... no.... faaaaar from an easy withdrawal. Thousands of people are apart of an online community called ITSAN and are all in this hellish journey but at different stages and severities. I believe that even if I am going through all the terrible symptoms, ITSAN saved my life. Because once I flush all the steroids out of my body, once my body learns to rework itself on its own, I believe I will be a much healthier person than I was on topical steroids. And here's hoping my eczema will be gone for good.
Symptoms of TSW (topical steroid withdrawal) collected by Stephanie of Home Apothecary:
* Intense redness that can cover the entire body at times
* Red “sleeves” on limbs
* Blistering and cracking of skin
* Skin that radiates heat, blisters from heat; ice/cold water therapy needed
* Raw skin that is tremendously painful
* Skin that tears easily when scratched, thin skin
* Skin burns in water during certain stages
* Extreme shedding of skin
* Continual intense itching throughout most every stage – described as “to the bone”
* Edema (swelling of body parts) e.g. legs, hands, feet, ankles
* Stinging sensation, nerve pain
* Sticky/watery ooze from pores with a metallic/odd smell:
o Serous Exudate = a fluid with a high content of protein and cellular debris which has escaped from blood vessels and has been deposited in tissues or on tissue surfaces, usually as a result of inflammation.
* Change in body odor
* Skin that turns an odd “purple” color during certain stages
* Skin that thickens / wrinkles during certain stages, “elephant skin”
* Inability to regulate body temperature
* Inability to sweat, then in later stages sweating profusely
* Chills, shivering
* Alopecia (hair loss) on all parts of the body – e.g. head, eyebrows
* Swollen eyes / dry eyes / itchy eyes
* Eye sight changes / blurry vision / steroid induced cataracts
* Swollen lymph nodes – most common in groin and head, but can be all over body
* Joint pain
* Insomnia
* Loss of appetite / weight loss
* Diarrhea / constipation / nausea
* Adrenal fatigue
* Loss of energy / exhaustion
* Depression / anxiety / irritability / moodiness / panic attacks
* Mental “fog” / inability to concentrate
* Recurrent skin infections; impetigo / staph / herpeticum
* Skin bumps, pustules, lesions, blisters
* Skin discoloration
* Changing nail color, peeling nails and nail ridges; also nail bed infections
* Low libido
* Change in menses/menstrual cycle
* Steroid induced warts
* False allergies / high IgE’s
* Initial blood test results that lead to suspected serious conditions/syndromes/diagnoses that are ruled out following further tests/examinations
I am 6 months into this withdrawal and I've probably experienced 90% of the aforementioned symptoms. On that sh**** note, here are some images during my detox..
 |
| Month 1 chest was burning, itchy, weepy, and nerve pains present |
My TSW emergency kit:
- Stephanie's Home-apothecary Lemongrass balm (Her incredible son is going through tsw) and she makes helpful and soothing balms for tsw folks. The Home Apothecary (note I am currently not putting moisturizer on 90% of my body. I only use the moisturizers for my arm joints and neck/chest area)
- Good ol vaseline- I know this is controversial but sometimes it is all that sits comfortably on my skin. Plus it creates a barrier
- Bordeaux's Butt Paste- I know diaper rash cream but it has zinc! So good for healing cuts and wounds
- Tea tree oil mixed with water- helps infections
- ice packs- I have about 5 in my freezer ready to go. I needed it all the time the first 1-4 months
- Dead Sea Salt- great calming of itchy or burning skin. I loved baths in the beginning. Add a bit of lavender or coconut oil for more calming effect.
- bandaids
- Masking tape- believe it or not I found that taping my nails with a few layers stops me from breaking my skin while asleep at night. It's tedious but worth it. Some use fabric tape.
- Ibuprofen 600 mg (only used it for first 2 months then stopped) for pain
- 2 baby aspirin (81mg) for pain
- hydroxyzine (atarax 25 mg) antihistamine, sleep aid, anti-anxiety
- Curcuramin (turmeric spice in capsule- great natural anti-inflammatory) but purposely didn't use it for too long
- Meditation- having a mantra also helps
Vitamins/Supplements
- vitamin B12
- vitamin D3
- Omega-3 fish oil
- vitamin C
- L-Carnitine
- probiotics
I want to make this so very clear. This health condition is not your ordinary eczema case where the rashes are just itchy and uncomfortable. Steroid-induced eczema (particularly when detoxing from it) is HELL. In all my life, I have never gone through anything like this before. Simple atopic eczema?! That's nothing compared to topical steroid withdrawal. This is REAL. And all I can do is take it one day at a time. Moment to moment... waiting for a break.
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