My 5 Year Progress Update with Red Skin Syndrome (By HP)
I wanted to touch base today and give you the latest on my Red Skin Syndrome recovery. If you would like to know more about what Red Skin Syndrome is you can read one of my previous posts here.
It’s the 5th year that Christine and I are teaming up to do the 30 day Raw Vegan challenge. Eating a raw food diet for a month or longer each year boosts my immune system and helps to reset my metabolism. If I’ve been getting lazy or not healing as quickly from wounds or my energy is declining, the raw vegan diet just brings me back to where I should be. I feel more at peace and more “well”, if that makes sense.
I wanted to mention that a Raw Vegan diet is not for everyone and each person should work with their health practitioner in determining the best holistic solution for them. Each person is different. There’s no cookie cutter solutions for anything. Therefore, don’t put pressure on yourself. Take each day as it comes and try to listen to your body’s needs.
That being said, mostly everyone benefits from increasing their raw food intake. Whether it’s in the side dishes or the forefront of the meal. When I am not completely Raw Vegan, I always try to have 1 Raw Vegan meal daily. So even if you can’t join us by being competely raw, you can join us for our 30 Day Raw Vegan Challenge by trying to just increase the percentage of raw foods in your diet.
Every year www.glowingwhealth.wpenginepowered.com makes it possible for me to take a moment to raise awareness for Red Skin Syndrome and the non-profit organization www.itsan.org. ITSAN (International Topical Steroid Addiction Network) has been educating and helping validate the diagnosis of Topical Corticosteroid Addiction in the medical community. They also support the patients and their caregivers who are suffering througn Red Skin Syndrome and withdrawal from Topical Corticosteroids via a private forum. Maybe you or someone you know is suffering with worsening “rashes” and uses Cortisone or other topical steroid preparations to treat them. Check out www.itsan.org to read the symptoms of Red Skin Syndrome.
May 2012 marked my 5 year anniversary off of Topical Corticosteroids! It’s been a slow but steady climb to recovery. I’m so glad the worst is over. This year I’ve been working on increasing my muscular strength and rehabilitation of the hip injury that just won’t quit.
Yesterday my Physical Therapist said I was doing so well I could run try running 1 mile a day at a slow pace. It was a great moment! Before I became terribly ill I was training to run a half marathon and had actually run the famed 12k Bay to Breakers mini marathon in San Francisco! My goal is to one day run it again. So let’s see what then next year has in store.
This years’ milestones included my first snowboard trip in 7 years. I was able to snowboard Lake Tahoe two half-days with a day to break it up in between. It was epic to say the least! Also I flew in an airplane across country 8 times over an 8 month period. This is usually a nightmare for me because of edema as a result of being in the plane.
I usually require a day or two of rest and several lymph therapy massages after a plane trip, even after wearing compression bandages. But this time I didn’t require intense rest. Just my trusty compression bandages, walking on the treadmill and one lymph massage per each arrival. I never could have handled monthly flight after flight after flight. But my body amazingly held it’s own this year.
I also made it 7.5 months without getting a skin infection. This is amazing! I was getting them monthly even before I discontinued the Corticosteroids. Now I almost made it 3/4 of a year.
My sleep is still often interrupted, but I will go through periods now where I can sleep straight through the night. My hands and wrists are still quite damaged. They often swell and crack. The skin is very atrophied and at times I still can’t use my hands. The ankles, knees and crease opposite my elbow are the still very rashy off and on but they aren’t as unstable as my hands. At times my neck and eyelids will flare as well. Just this month I am seeing some new specialists to get a new overview of my health to see what part my endocrine system and allergies are playing in the flared skin. Hopefully we will determine if I’m officially over the Red Skin Syndrome and get to the nitty gritty of my immune system issues.
I want to talk about the Cognitive Behavioral Therapy I have been receiving off and on for 2 years. I began seeking therapy to cope with my depression and PTSD induced by my illness. It’s because of receiving this therapy I could even get on a plane 8 times and sleep in foreign environments without things being at the standard of cleanliness my anxiety made me think I required.
Traveling this year so frequently and being stable emotionally to be available for the support of my family during their difficulty marked a moment in time where I could personally look back and see how far I have come. Once a bed ridden woman of 35, sleeping 20 hours a day, in bandages, with friends and family caring for all of my needs. Now a woman able to go to the aid of others!
Many have asked me over the years what things I have done to aid my recovery. There’s no one trick or thing that I have done. It’s many small things that have helped me along the way.
Relying on my faith, family and friends to support me was where I started. Sometimes letting go of control and recognizing you have to let others in was a big struggle. Also, I have really tried to focus on making all of my habits healthy ones. Keeping physically active, getting lots of rest, balancing my activity to energy ratio, eating high quality foods and getting the right health practitioners to support my needs have all been a contributing factor.
Though not always easy I’ve also tried to maintain a positive attitude. Every day my husband kindly let’s me state the facts of the day. The facts are not complaints. We decided that we could both handle me stating facts. He let’s me tell him everything that is hurting, from my hands to my heart. Then he gives me comfort so I can let the facts go and we move on through our day. I just focus on stating the facts so I can be acknowledged and not allow the facts of life to deter me. This helps me to focus on the things I’m grateful for each day. And together we take it one day at a time.
May your day be full of things you are grateful for despite the facts of life. We hope you enjoy coming along with us on our 30 Day Raw Vegan journey. We look forward to hearing from how you have participated this year!
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Hi, I’m Christine, thanks for stopping by! As a fibromyalgia thriver (symptom-free for over 10 years now thanks to diet and lifestyle changes), it is my passion to share the healing power of food.
As an RN and Holistic Nutrition Practitioner, it is my desire to empower you to take charge of your life.
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