Month 31 – July

This month was pretty rough. My sleep hasn’t been great the past few weeks which really throws me off in my day to day life. I’ve started teaching music though so I’m able to work my life around my physical state rather than having to revolve my life around a job with a set schedule. We also started doing the auto immune protocol diet following the guidelines in this book. I’ve also been following the blog of Mikaila Peterson. She has battled a lot of different diseases in her life, from depression to rheumatoid arthritis and seems to have driven them into remission through changing her diet. My girlfriend also found this TSW blog that inspired her to try this diet out with me.

I’m hoping this autoimmune diet does the same for me. It’s pretty bland option wise, mostly just meat and vegetables. It’s also hard to eat enough to maintain what I would consider to be a healthy weight (I hover around 135-140 lbs right now, which I think puts me close to the underweight side given my height). The first few days of the diet I don’t know what was happening but my skin did not seem to like it.

We had gone camping the previous weekend so I indulged pretty heavily in foods that weren’t good for me: smores, chips, coffee with cream. I also had cherries which I didn’t think much of but cherries have always made my lips tingly so I assume I must be allergic to them. When we started the diet we were still eating them so it’s possible that I was having an allergic reaction to them and that’s what caused my skin to flare. That died down after a few days but then last weekend we went camping again and I was out in the sun for probably around 10-20 mins and by the time we got home I had broken out into a full body flare. It seems to have died down now and today my skin is feeling pretty good.

My skin is so unpredictable and it’s very hard to know what exactly to do to keep it from freaking out. I’m trying my best to stick to this diet as close as I can and so far we’ve been doing really well besides probably eating too much fruit. A lot of people don’t think diet has much to do with TSW recovery but I want to try it for two reasons: it gives me the only bit of control that I have in this situation and it’s no secret that food is largely connected to health so during this time I really need to give myself the best opportunity I can to heal.

Month 30 – June

Things seem to be getting back to normal more and more every day for me. Still having the odd flare once or twice a month that usually seems to be correlated with too much sun exposure or eating ice cream. So summer is always a challenging time of year for me.

I’ve been trying to reduce my use of moisturizer this past month. So far it seems to be going okay. I have to keep my hands covered for the most part since they’re so unsightly and still have some small cracks that I don’t want getting infected but the dry, flaky skin seems to form a protective barrier for the skin underneath to heal. Hopefully this moisturizer withdrawal continues to be more successful than my last attempts, which were nothing short of agony.

My lady and I are also going to attempt the autoimmune paleo protocol soon. We’ve been reading a lot about gut health and I really think that this could go a long way to control my flares and help heal my hands.

I’ve also been killing it with cold showers. With summer here they help a lot keeping the edema down (along with ice packs). I’ve gotten to the point now where even the coldest my shower gets isn’t cold enough for me. It’s a very refreshing way to start the day and I’ve heard that it helps boost your immune system functions.

Month 29 – May

This month was pretty normal. Can’t complain really. The worst of my symptoms have been reduced to my hands and a little bit on my ankles and neck. I’m feeling better every day. I still have to avoid long periods of exposure to the sun though. My skin still burns pretty badly after 15 minutes of direct sunlight then I have to deal with 2 or 3 days of swelling, itching and flaking. I still try to get around 5 to 10 minutes of sunshine a day though, I usually just jump rope in the sun to get the lymph moving and get my daily dose of vitamin d. Getting out in the sun in the morning is good for the circadian rhythm as well and now that my sleep is more or less back to normal I don’t want to disturb that. I just have to make sure that I avoid the peak hot hours otherwise I burn very quickly.

I’ve also been doing cold showers after my bath and at this point I find them very refreshing. They were painful at first but now I can’t get the water cold enough. I haven’t been practicing the Wim Hof Method very much lately, which is crazy; it takes like 20 minutes and it’s just breathing! How can I not find time to breathe!

Months 27 and 28 – March and April

 

There hasn’t been too much change over the last 2 months. My sleep is back to normal I would say. I still wake up once a night or so but I would say my sleep quality is back to that of the average person. My hands are still the part of my body that get me down the most; they are taking forever to heal. I can manage it for the most part with moisturizer but if I run out I’m in for a rough time. The cracks that form on my wrists and knuckles as well as the side of my hand are really painful. I tend to wear gloves for the most part to hide them and keep them from being exposed to the drying effects of the air.

I got a tip from someone online that their hands were in a similar state as mine and they discovered that it was because their acid mantle had been damaged from steroid use and the way that they fixed it was by soaking their hands in distilled vinegar for 5 minutes at a time. I tried this a couple of times recently and it was excruciating. After a couple of days I hadn’t noticed much change, so I don’t know if I can tolerate that level of pain for something that I’m not sure will work in the long run.

I’m hopeful that this will all be over soon. I have no way of knowing when or if my body will fully heal. I’ve let my diet suffer a bit lately too. It’s very costly, in both time and money, to maintain a proper keto diet and once you start to slide it’s hard to stop reverting to bad habits.

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.

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.