Posted by: D.I.Yives | May 30, 2016

Raising Awareness for RSS – 4th Annual

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Yup! Believe it. That’s me on the left @hp_vegivore & Christine on the right @justglowingwithhealth we’re teaming up again on IG, FB and Twitter!

Four years off of Steroids and I’m finally starting to look like myself. Woop woop!!! Though a much older version of myself, it’s really starting to look like me.

I’m going Raw Vegan for the entire month of June, yet again, for the 4th time. I’m excited to get my body back in shape and boost this little immune system of mine. But mostly I’m excited to have another opportunity to help raise awareness for Red Skin Syndrome. I hope that you will take the time to come check us out and maybe go Raw Vegan for a day to cheer our venture on.

Many people think I’m getting paid to do this. But I’m not. I’m trying to support Christine’s ventures since she has been an amazing health coach and support through my withdrawals from Topical Corticosteroids. And I’m trying to keep clearing the junk out of my body in order to improve healing and reduce inflammation. Going Raw Vegan and blogging about my health issues and improvements works in the interest of everyone. And I like to look big picture at things.

So far there is no known research that supports the recovery period of an RSS patient reducing as a result of diet changes. (Trust me there are 100s of people trying all sorts of diets and things to try and speed up their recovery. They post all about it on the ITSAN.org Forum and Facebook group.) Food intolerance and food allergies can be reduced through diet changes, which is something that links people suffering through RSS and other benefits resulting from diet changes. Many who began using Corticosteroids that are now RSS sufferers, like me, were Atopic Dermatitis patients before going on Corticosteroids. Most likely many of them suffered from digestive issues leading to inflammation in the gut and food intolerance. (Dr. Axe is all about healing the gut right now. You can find scores of info on this topic.) Ultimately the reduction of inflammation and the immune boosting results of consuming high quality foods are what I’m going for by going Raw Vegan for a temporary period.

I’m officially 48 months (4 years) off Topical Corticosteroids and counting. Dr. Rapaport says I’ve got 12-18 months left for recovery. Its possible I will still have to deal with the immune and endocrine components that may have began before Corticosteroid use, but I will cross those bridges as they come. I have not stopped “flaring” but they are about 3-6 months apart and last for less and less time. They are also less severe and though I sleep 14 hours a day or more through them. I am able to walk and bend my elbows, which I couldn’t do before. My hands still become unusable though which is annoying to say the least. I look forward to the sclerosis on my hands, forearms, wrists, neck, knees, ankles and feet recovering. I’ve made great strides and I try to focus on them.

THIS IS THE FIRST TIME EVER – I’m posting pictures of what I looked like when I first began my Topical Corticosteroid Withdrawals. I don’t think I need to remind you how horrific it was in the beginning. I also want to say that I’m super self conscious about these pics going up and am unsure how long I will allow them to be posted. But I feel people who are newbie Red Skin Warriors need to see that they can pull through it and that they will get better. I have benefited by seeing other RSS patients photos and I feel it is important that I pay it forward out of respect for those who have bravely gone before me.

Picture 1 – July 2012 I was totally bed ridden. My mom had flown in from across the country to be my caregiver for the 2nd and 3rd month of my withdrawals. My body was 50% covered in burning hot itchy oozing flesh. This is what I looked like from head to sternum.

july2012pic1

Pictures 2 & 3 – In October 2012 I actually had a 3 day reprieve from the withdrawals after 6 solid months of “flares”. And then I began my second flare. This time the flare increased from head to my legs. And eventually from head to toe during the flares following.

october2012pic1       october2012pic2

You can see why I’m really happy that today I look like I do in the opening picture with Christine. Mainly my hands are the worst and spotty on my joints and neck. I have been able to resume some what of “normal” routine, though much slower going and limited then before I became bed ridden. But its onward and upward! Can’t look back.

I’m looking forward to this summer of improvement and hoping the winter will not leave me bed ridden this year, as it has every year since discontinuing steroids. Im really hoping this will be all over soon.

Please, starting June 1-30, go check out my guest blog posts on http://www.justglowingwithhealth.com, Instagram, Facebook & Twitter! We’ll be talking about my health improvements, the release of her new Eprogram “21 Days to Glow”, itsan.org and sharing tons of Raw Vegan tips.

 

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