I “celebrated” 3 years without topical steroids this month. It’s very bittersweet; I’m proud of myself for sticking with this but in some ways my skin feels worse than ever, especially my hands. My face also has about 3 spots that don’t seem to want to heal and ooze on a consistent basis. It’s bittersweet too because I can’t really remember what normal life is like anymore. I don’t remember what it’s like to wake up without having my hands and fingers be almost immobile and to wince with pain with the slightest movement of my hands. Or what it’s like to trust that my sleep will be somewhat normal and that I will not have to get up multiple times a night to either massage my hands or attend to the oozing on my face. On the plus side, I do recall things being a lot worse when I started. Full body itching, I could barely move my neck and my ears were oozing constantly along with my face.
This month was rather miserable though. I was doing the lufenuron cleanse and it was rough. Tons of oozing on my hands and wrists. My hands and fingers especially were sore, cut and swollen pretty much the whole time. I’m hopeful that the cleanse helped. It’s hard to know for sure at this point. I’m kind of concerned about taking it since I’m really taking a rather large risk in taking it since there isn’t a lot of information or research done on it and no real regulations on it. Desperate times.
In other news, I recently read a blog post from a fellow TSW’er who did some research about how much cortisone the body naturally produces vs. how much the body absorbs through taking corticosteroids. It’s worth a read. TL;DR: the body naturally produces around 40mg of cortisol a day and going over that amount can end up damaging the adrenal glands. The author also made a reddit thread about it where one person was saying that only 0.2% gets absorbed through the skin unless you apply it to your groin or eyelids, then the absorption rate goes up to ~30%. It really makes me consider how much I must have absorbed during my time taking them. I remember being stressed out a lot and have pretty wild mood swings.
I’ve been seeing some improvement this month. One big reason I think is because Kelsey got some Tamanu oil. I was hesitant that it would work since I’ve tried so many different creams and oils and they all seem to lose their efficacy after awhile but for now this Tamanu oil has really helped keep my face from oozing too much. I started using it my hands too after doing moisturizer withdrawal for the past few months. It seems to be helping so far without making my skin too soft and thinned, at least for now.
I think I’ve also started to see results from the diet I have been prescribed by my naturopath. I also decided to try a candida cleanse. My brother’s friend hooked me up with some stuff called Lufenuron. It’s kind of controversial but it’s supposed to help kill fungal infections by inhibiting the chitin layer so that your body can kill the fungus. I figure that due to the corticosteroid use, it killed all my good bacteria on my skin and in my gut and has allowed for possible fungal and parasite infections to take root. What sucks though is that these things mostly feed off of carbs so I’ve had to reduce my diet to chicken and broth, salad, avocados, olive oil and sunflower seed butter. I have the occasional dessert of coconut whip and walnuts but my diet is not too exciting for the foreseeable future. Just salads, soups and shakes.
I made sure to not start this additional round of food cuts until after Christmas; had to have my yams and apple pie. I also got a theracane for Christmas, you know you’re getting old when you’re more excited about getting a theracane than any other gift. It’s amazing though, my body has been really stiff since starting TSW, not exactly sure why but it’s really helped me release and relax the muscles in my neck, shoulders and upper back. It works on the whole body though, they were really on the ball when designing this thing.
Some days are harder than others…
Another month down. I’ve been sticking to my diet as best as I can. It’s been tough, food is very bonding experience and now having my own personal diet that doesn’t allow for a lot of variety has been pretty isolating. I’m okay with it but doing the other diets (keto, paleo, AiP) with my girlfriend was somewhat easier just because I at least had someone to share food with (and the misery that comes with not being able to eat bread and sugar). Going out almost feels pointless to me at this point; I used to always like to get a little snack or a coffee or something when I was out but I can’t trust any food that I don’t make myself anymore. Everything has added sugar or high fructose corn syrup in it. Even if I go to a restaurant there’s usually nothing I can have because it’s more than likely cooked in canola oil or some other cheap, low quality oil. So it’s just chalk flavoured smoothies for me everyday instead.
I’ve seen some improvement this month but the itch hasn’t been eliminated, my face is still oozing in a couple spots, my joints always feel like they need to be cracked, and I’m still sweating at night while being cold all day. Other than that, I’m ok but those things can really sap my energy, especially if I don’t get a proper sleep. Having holes in your skin can really affect your mental health too. To put it in Star Trek terms my shields are down and all auxiliary power is being routed to life support systems. I don’t really like leaving the house for a couple reasons: I feel really vulnerable a lot of the time with a compromised skin barrier and I know how weird I look scratchy and cracking my joints all the time.
I’m sorry if I repeat myself a lot in these blog post. It feels like I retread the same ground every month: “I think this month was better, but maybe not, I don’t really know.” It’s hard to know how much progress I’m making but I think since I’ve started trying to tackle this dysbiosis issue I think I’m on the right track. I’ve gained a few pounds in the last month which is encouraging, I couldn’t seem to gain any weight for a long time now, dipping down as low as 130 lbs. I think that was due to malnutrition due to a permeated intestinal lining.
I’ve already discussed the results of my IgG/IgE test, I neglected to mention that my naturopath also told me that I had dysbiosis, which means that the microbiota in my gut has been overrun with “bad bacteria”. I was also told that corticosteroid use kills the good bacteria in your system allowing the bad to take over and cause a myriad of negative health effects. This is likely what’s causing my skin issues at this point, at least that’s my current working theory.
I wanted to mention something about photosensitivity. I have been extremely photosensitive since I stopped using corticosteroids. If I’m out in the sun for more than 10 minutes, I’m burnt. The next 3 days or so I spend peeling and oozing. This summer I was camping with my girlfriend and her family. Her grandfather had also used topical steroids on his face for some pre-cancerous cells he had. Lo and behold, he can’t go out in the sun anymore either. I did a little bit of research and found this article that confirmed to me that topical steroids do in fact cause photosensitivity.
Since I’ve started withdrawing from TCS I’ve tried not to get mad about the medical communities response to this ailment. The incorrect diagnoses and the over prescription of dangerous pharmaceuticals, I’ve tried to keep a stoic mindset and just deal with my current circumstance, but it’s hard to conceal my rage over this. How did my doctors not know that TCS could cause photosensitivity? The doctor I originally went knew that I was a landscaper, why wasn’t I warned? My dermatologist prescribed light therapy (which was a very painful ordeal for me to go through) did he not know or just not care? This photosensitivity issue has cost me a lot of money since I am unable to work in the profession that I had grown accustomed to while also severely limited my employment options (I’m not qualified for a lot of office jobs and any other indoor job is usually labour intensive and you have to deal with a lot of allergens), not to mention the pain and suffering it has caused. I try not to dwell on it because the more I do the more furious I become at the situation I’ve been placed in. It would be nice if someone in the medical community would be held accountable but I fear these issues will go unaddressed for years to come.
This month was pretty standard. No great change in my condition. Maybe a bit less itchy but I’m still dealing with a lot of itching and discomfort. My sleep has stabilized a bit but can still be unpredictable. I actually forgot to take any pictures during this month but there wasn’t much change from August though.
I received the blood results back from the IgG/IgE test that I had done. I don’t know exactly how much stock to place in it, it seems that it’s not a conventionally used diagnostic tool due to a lack of clinical evidence but from what I understand about it the test seems legitimate enough for me to try it, despite it’s cost.
The results were interesting: I have an IgE reaction to the mustard vegetables (cauliflower, broccoli, cabbage), as well as shellfish, cherries, grapefruit, tomatoes, gourds (pumpkin, squash). I have been advised to cut all of those foods out of my diet completely. In addition to that I also have been having an IgG reaction to foods like beef and all bovine dairy products, bananas, gluten, legumes, carrots, citrus fruits I will need to cut these foods out for 18 months or so.
I am pretty disappointed about the results but it was exactly unexpected. We’ve been on the Autoimmune Protocol for the last 3 months so a lot of those foods I already assumed that I had been having a reaction to and had already cut them. Shellfish and cherry I have observed a strong reaction to (I even had to go to the hospital once after a bad reaction to eating shellfish). The mustard vegetables and gourds were very surprising to me. I eat some kind of vegetable from the cabbage family more or less daily (cauliflower rice in particular has been a revelation in our house), gourds I eat regularly as well.
At this point with all the other diets I’ve tried I’m willing to try this one too. It means more adjustments but I’m getting pretty good at adjusting my diet so if this can help it’s worth trying as well. I was also glad that things like coconut and avocado didn’t raise any alarms.
Here’s a list of the foods I can eat:
I’m 2 months into the autoimmune protocol now. It hasn’t really been the silver bullet that I was hoping for but I think there has been some improvement. I’ve heard from some people that it may take 3 months or more before you really start seeing results. The first month was really hard. I don’t know if it was a flare or a candida die off or what but I had a lot of trouble sleeping, I was constantly fatigued and my skin was sore and oozing all the time. It’s been a bit better lately. My sleep has improved (I still wake up in the middle of the night with a need to scratch or massage my hands or something and will lay awake for hours but compared to last month it’s much improved).
I also had a food allergy blood test done with a new naturopath I’ve been seeing. It was around $400 but I’m starting to really get desperate. Even though I’m on the AiP diet there still might be something that’s triggering me, it would also be helpful to know if there are some foods that I can add back in. The naturopath also gave me some neem cream with aloe. It’s been really helpful and I would say it’s probably the best moisturiser I’ve used to far. Although whenever I make a claim like that the moisturiser soon loses its efficacy.
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.