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.
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.
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!