Month 26 – February

This month has been really good, all things considered.

My hands are still the most heavily affected part of my body but with the balm that I made, it’s become a lot more manageable. I need to reapply several times a day (and night) but there is no more oozing on my hands and the cracks on my hands don’t bother me nearly as much. Still dealing with edema in my hands and neck, which is annoying and uncomfortable, but when I compare it to last year at this time, I’m miles ahead.

My face has also cleared up considerably. There’s no more oozing. At all. Which is HUGE. That has been the most annoying thing while going through this and the biggest contributing factor to me being a social recluse. I attribute this to using jojoba oil daily. Apparently it has a similar chemical profile to that of the natural skin micro-biome.

I’ve been on the ketogenic diet since the  new year as well and I think that has had a profound effect. It’s a very satisfying diet and in a way, it’s a much easier diet to follow once you know what to avoid. I’ve been able to enjoy coffee again too! I make them bulletproof, which means I add a tablespoon of butter and coconut oil with some whipping cream. The high fat content satiates me from the time I wake up until lunch. It probably doesn’t help the edema but with all the other vices I’ve eliminated over the past 2 years I’m going to allow myself this small comfort.

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Month 25 – January

 

Well ,it’s now been 2 years since I stopped taking TCS. My life has changed a lot in that time. I’ve tried numerous diets, right now I seem to have settled on the Ketogenic diet. It’s a high fat, low carb diet that eliminates grains, sugars and potatoes more than anything. I’ve only been doing it for a month, and it’s a bit early to say, but I think it has helped a lot in reducing inflammation in my body overall. The oozing on my face and hands has pretty much stopped, which has a huge effect on my overall mood. When your face is oozing disgusting fluid all the time, it really saps any self esteem you may have accumulated and generally makes you want to dig a hole and hide in it until your face magically clears up. All things considered, I’m still very red on my face, neck, arms and legs (around the joint areas) but my skin feels more resilient than it has in a long time and sometimes even feels like normal skin when I’m properly moisturized and hydrated. Another thing that I think has been helping, my hands at least, is that I’ve started putting aloe vera oil on hands and then sealing it in with my beeswax jojo-balm. It’s really helped in reducing inflammation and healing up the cracks that form on my hands.

Overall, these last 2 years have been a period of complete transformation for me. From what I eat to how I sleep and take care of myself, I’ve really had to make my psychical and mental health the main priority in my life. I’m also very fortunate to have such a supportive girlfriend that has stuck by me this whole time and suffered with me and made my health a priority as much as I have. I’m truly blessed and eternally grateful to her for being so strong and so accommodating to my circumstances. I see people online all the time saying how their partners can’t handle this, and I can understand why; it pretty much completely robs a person of their self esteem, confidence and leaves them an anxiety riddled mess, as least in my situation. But she has stayed with me despite my looking like I have contacted greyscale. Trying not to get too sappy here but she’s definitely the best thing that has ever happened to me and has been the MOST important thing in my road to healing.

Scientific articles & TSW related videos

Here is a list with links to some of the best scientific literature and videos I have found on TSW.

It’s good to have some evidence when talking to doctors and it’s also a wise to know how to communicate in their language.

This may also be helpful to convince skeptical friends or family members, if you have any.

(Personally the only people I’ve had a hard time selling the idea that I’m suffering from TSW have been doctors and derms.)

ITSAN Overview on TSA/TSW/RSS

This was the video that made me realize what I was dealing with. Short video that pretty much gives you the broad strokes of this condition.

Current hypothesis in atopic dermatitis and red skin syndrome

This one is a little dry but does a great job of outlining the current hypothesis behind what causes rss and why. It’s made by a guy that has a Ph.D in immunology of allergies at McGill University. He also has a gofundme which could use some support.

Topical steroid addiction in atopic dermatitis

This paper is one of the most complete medical papers I have found on TSW/RSS. There are also a lot of great links in the reference section.

White Paper on Steroid Addiction by Dr. Marvin Rapaport

Dr. Rapaport has been one of, if not the, biggest dermatological proponents of RSS. He has a lot of great blog posts on his website relating to TSW/RSS.

Improvement of Atopic Dermatitis After Discontinuation of Topical Corticosteroid Treatment

This one is behind a pay wall but there is a  brief overview of the study and a preview of the first few pages of paper.

DermNet New Zealand

A great resource for all things skin related. Here is their write up on TSW.

A prospective study of atopic dermatitis managed without topical corticosteroids for a 6-month period

This study included over 350 people and it showed that allowing atopic dermatitis to heal on it’s own over a six month period actually had better results than using TCS over the same amount of time.

Histological and Immunohistological Findings Using Anti-Cortisol Antibody in Atopic Dermatitis with Topical Steroid Addiction

This is also a great paper that has a lot of pictures of skin samples that highlight, pretty clearly, what a weakened skin barrier looks like.

BONUS

Every doctor appointment ever

This video pretty much sums up every consult I’ve had with dermatologists over the 2 year period that I’ve been battling this condition. Maybe you can avoid this meeting by showing your doctor some of these resources.

Month 24 – December

 

This month I made a pretty great discovery. I started using jojoba oil and it has really alleviated a good portion of the cracks on my hands and wrists. My brother also got me some products from Living Libations: BeDew Dab and Best Skin Ever™ – Frankincense. Pretty bold claim but it seems to be helping quite a bit on my face. I also emailed the company and they recommended I stop using almond oil and witch hazel so I have omitted those from the beeswax balm I usually use and replaced them with just jojoba oil.

Another big thing I am about to try is the keto diet. My girlfriend and I have been researching all the potential health benefits from it and we have decided that it’s worth trying to see if it helps with my skin since it’s supposed to be an anti-inflammatory diet. I also have a history of diabetes in my family as well as dementia so those are also possibly remedied by the keto diet. Since beginning TSW I have noticed a difference in how strong my skin is related to how clean I am keeping my diet. It seems that the more vegetables and meat I eat, the less my symptoms bother me. When I have a lot of sugar I notice I am much itchier and the days following I have a lot more dead, flaking skin. I’m sure I’ve mentioned that several times over the course of the last 2 years but it bears repeating.

I’ve also taken up jumping rope since it’s reportedly good for the lymphatic system as well as a great form of cardio. I also have scrawny chicken legs so I’m hoping I get some sext calves out of the deal too.

Month 23 – November

 

Not much change from last month. Still struggling to keep my hands and face intact, there’s also some pretty intense itching that happens around my ankles and feet from time to time. The skin on my hands looks like it’s thickening up and my face only has couple spots that are still oozing but I’m still dealing with pretty much full body redness. It’s a very slow process that makes me doubt whether or not this will ever go away since the progress I have made is somewhat minimal, physically. Mentally I feel a lot more clear headed than I can ever remember feeling. Part of that might be from cleaning my diet up, but I suspect a large portion of it is because I’m not rubbing stress hormone on my body twice a day.

It’s weird because when I talk to people about what I’m going through, they have been very understanding and think my diagnosis is the correct one. The only people I have gotten negative feedback from are dermatologists and doctors. They seem to think that this is all in my head and that I just have really bad eczema, despite the fact that I incorrectly used TCS for a very long time and have had over 25 different symptoms related to overuse of TCS and adrenal insufficiency that began shortly after cessation of use. I know that prescription topical steroids are a billion dollar industry but I had more faith in medical officials to do right by their patients than what I have received. I’m not sure if it’s ignorance or greed or a combination of the two but it’s been a real eye opening experience to the dangers of what seemed like benign pharmaceuticals.

How to make your own beeswax moisturizer

 

 

I’ve tried pretty much every moisturizer that’s on the market: aquaphor, cetaphil, cera ve, coconut oil. They would all help for awhile but eventually my hands would start to ooze a lot and just be awful to deal with. I’ve attempted moisturizer withdrawal several times but that has always rendered my hands too sore to deal with anything.

This beeswax moisturizer is the only moisturizer that I have found that my skin can actually tolerate for any extended period of time. It’s also quite cost effective.

In a large pot place flat wire steamer rack into pot, boil enough water to cover an inch up from the bottom of a large jar. Heat beeswax, jojoba oil in the large jar until wax is melted in. Add vitamin e and lavender, stir together. Pour into smaller containers and refrigerate until solid.

Month 22 – October

The healing continues. Or at least, my symptoms don’t seem to be getting much worse. I’ve been sticking with the beeswax as a moisturizer along with Vitamin E and almond oil. Still get itch fits, but the severity of them has reduced immeasurably.

Something else that I’ve been trying this month is the Wim Hof breathing method. If you’re unfamiliar with Wim Hof, he holds 20+ world records for cold immersion, running a marathon in the desert without any water and hiking Mount Kilimanjaro in shorts. He has also been the subject of scientific experiments where he was shown to be able to modulate his own immune systems through breath work and he believes that this is a teachable skill. It’s all pretty unbelievable but it has me very interested in what he says and a lot of the science behind looks to be legitimate, at least to me so far.

His intro breathing method is pretty simple; just do 3 rounds of 30 deep breaths and on the last exhalation of each set, hold your exhale for as long possible. I’ve been trying to do this whenever I get an itch attack and so far I think it has been very beneficial, if only for the fact that it distracts me until the urge to scratch has subsided. More than that though, I find when I attempt this I get chills all over my body but especially in my arms and my lower legs (which also happen to be the places where my eczema is the most flared). Afterwards I’m left in a much more relaxed state. It will be interesting to see if there are any other long term benefits that can help me get this condition under control.