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.

Month 21 – Septemeber

 

This month was pretty good. I’ve been using Vitamin E and almond oil for moisturizing and my skin seems to be tolerating it really well. I’m finding that I rely heavily on my daily epsom salt baths for the thinner parts of my skin to dry out and heal. I’ve also been taking circumin regularly as well as probiotics daily. Not sure how much of an effect those are having but they don’t seem to be hurting and I strongly suspect that my gut biome has been messed up from years of unhealthy eating and there’s a growing body of research to suggest that skin health is directly connected to gut health. Either way, I’m just trying to not rock the boat at this point, continue doing what appears to be working and avoid all of my triggers as much as possible. My skin seems to be getting stronger, it’s still very flaky but the oozing has diminished considerably.

I’ve also decided against going on prednisone. It seems too risky at this point in my recovery to supplement my body with cortisone, I strongly believe that it will only lead to a rebound flare when my course of prednisone is finished and then the dermatologist will most likely move on to prescribing me some kind of immunosuppressant that will weaken my immune system unnecessarily. I’m just not ready for that. If my skin hasn’t improved in 5 years maybe I will go down that rabbit hole but until then I think I can manage my symptoms and try to find some way to make money that doesn’t exacerbate my condition.

Month 20 – August

This month has been up and down. I’ve been battling a flare for pretty much the whole month. I can’t really work landscaping anymore for a few reasons, I can’t commit to a full time schedule, the nature of the job exposes me to way too many allergens and irritants and my boss’ sympathy for my situation is wearing thin.

I also had a dermatologist appointment today, my 4th one since I started TSW and most likely my last consultation with one. He was pretty understanding and agreed with me about the side effects of TCS and that I overused them. However, he still recommended that I take oral prednisone to get my skin under control. I don’t doubt that prednisone would clear up my skin but I really believe that this will end up being a band aid treatment and once the round of meds are done I’ll have a rebound flare and will having further delayed my healing. Honestly, when it comes to eczema treatments, dermatology is still very much in the dark ages and they seem to think that corticosteroids are the only treatment.

My current condition sucks to be sure, but I have more or less learned to manage it and I really couldn’t bear starting this ordeal over from the start just to get a few weeks of temporary relief. Some people will call me brave for this decision and others, I’m sure, will call me stupid for disregarding doctors orders. What I really am is scared. I’m scared that my current condition is going to be the status quo for the rest of my life and I’m scared of taking medication that will leave me off in a worse place than I am now. Both paths are terrifying and rife with uncertainty.

I read a recent study titled:

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

Here is an excerpt that I found extremely interesting and identified with immediately.

“Topical steroid addiction also known as the red burning skin syndrome may occur after prolonged use of TCS and has been discussed for many years. The skin produces cortisol, and so prolonged application of TCS can suppress this cortisol production in the same way that systemic steroids suppress the production of cortisol in the adrenal gland. Once the production of cortisol in the skin is impaired, irritants and allergens from the environment cause increased inflammation unless there is a consistent supply of TCS, and so the eczema becomes refractory. Prolonged use of TCS has been shown to cause a patchy defect of cortisol staining in the epidermis.”

 

Month 19 – July

This month has been rough on my sleep schedule. I can’t remember the last time I had this much trouble, probably around the beginning of the year. It’s been especially hard balancing work while not being able to get any sleep until 5AM and then having to get up at 6:30AM. Basically this whole month has revolved around work and catching up on sleep, which makes me feel really unproductive in life. I’m not even working every day either, usually only 2 or 3 days a week but even that much is hard to manage. I also slipped up on my coffee intake earlier in the month which seemed to really mess me up. Or it could have just been a regular TSW flare but coffee and black tea really seems to destroy my skin after a couple of weeks of steady intake. You would think I would have learned my lesson by now but I’m on that caffeine and sugar teet and it’s been harder than I thought it would be to cut it out. Green tea seems to be a much better alternative, both to get my lymphatic fluid flowing and it doesn’t seem to dehydrate me.

I’ve also been trying out this beeswax hand balm  as a moisturizer. It’s made locally to where I live, is all natural and doesn’t have any ingredients in it that I can’t identify. Most commercial moisturizers that I’ve tried end up irritating my skin and delay healing.

UPDATE: I started taking anti-histamines during the day and they have certainly made a big difference in my sleep. I’m sleeping pretty well through the whole night now. Reactine extra strength has been my go to but I don’t really like the idea of long time usage and reliance on it so I’ve switched it up to drinking a couple of pots of chamomile tea at night. I’m hoping it has a similar effect. Right now I feel like I have my eczema under control but I have to be diligent to not succumb to my triggers otherwise the whole thing goes to pot and life becomes unliveable.

Month 18 – June

This last month has been very challenging, and by challenging I mean hellish. My hands have really been falling apart over the last few months, oozing a lot and not seeming to get any better. In fact, they may be the worst they’ve ever been. The backs of my knees and ankles have also started showing signs of TSW as they have been itching a lot lately and I’m starting to experience more oozing from them whereas before I never really had any issues with them.

But since I’m experiencing all this oozing I’ve decided to try moisturizer withdrawal again. I’ve tried it several times in the best to varying degrees of success. It seems to help heal up my trouble spots initially but after awhile it becomes difficult to maintain having my skin so dry and it’s pretty damn painful having the creases of my hands and knuckles constantly cracked open. It’s like having deep paper cuts all over my hands. So the only thing I’ve been using has been sudocream. I don’t even know if this is the wisest course of action but I’m just really tired of not getting any results from moisturizing every day; it’s expensive and seems to irritate my skin after prolonged use.

My hands seem to go in cycles too. They will start out really dry and cracked and painful but if I can leave the skin on they slowly heal underneath. The skin usually sheds off in the tub or just from me picking and scratching it off, then my hands usually look and feel normal for a few days before the cycle starts again.

It feels never ending and if this is just something I have to deal with in life forever I don’t know how I’m going to manage. Money is getting tight and the only job I’m able to work that pays me a living wage is in landscaping but even that I can only tolerate doing 2-3 days a week. The mix of dust, sweat and constant movement is not ideal.

“Pretty Sensible”

I had an appointment today with a rheumatologist to see whether or not I possible had Lupus after some of my blood work tested positive with an ANA antibody that is linked with Lupus, in addition to my swollen lymph nodes, sore joints and a couple of other symptoms that are linked with Lupus. Luckily, it was a false positive, and the doctor ruled out Lupus and arthritis. He wants to rule out lymphoma so I need to schedule a CT scan but I’m quite confident that I don’t have it and that all these symptoms are TSW related.

At the end of our appointment I told him about my TCS usage and how all the symptoms I’ve been experiencing are related to TCS abuse and started shortly after I quit using TCS. He said that that was a “pretty sensible” conclusion and even used the word withdrawal (I now tend to avoid saying Topical Steroid Withdrawal during meetings with doctors because I’ve found that it tends to be a trigger for them to stop listening to me.) I can’t tell you how much those two little words meant to me. Almost every doctor I’ve seen has either clammed up when I mention TSW or immediately went on the defensive and try to diagnose me with something else. As I’ve said before, the only medical professional that has diagnosed me with TSW was a naturopath and they are pretty much at the bottom of the totem pole when it comes to mainstream medical acceptance.