Kelsey is my girlfriend, although she hates that term, she doesn’t feel like it conveys the seriousness of our relationship. It sounds like something an 8 year old calls a girl in his class that smiles at him. It certainly doesn’t convey what we have been through or how much she means to me.
She’s been there for me through the whole ordeal with my skin since it started. She’s seen me through more bad days than good ones at this point. For that I always feel guilty. She deserves only my best days.
She’s had to deal with skin flakes on our bed sheets every night, my oozing face being unable to snuggle up to hers and my general whiny, cantankerous mood.
She’s helped me through so many different diets, she’s done more research on all these diets than I have, figured out delicious recipes for us no matter what the restrictions were and given up the same foods that I have just so I would have someone to eat with.
She’s supported me both emotionally and financially for so long I can’t believe she hasn’t kicked me to the curb by now. Virtues of my cuteness I suppose. Same reason my parents never ate me.
She’s just been unbelievable and I can’t imagine life without her. And I can’t imagine having to watch the person I love going through something that has been so devastating to their health and not being able to do anything about it, and I pray I never have to.
So yes, she is more than my girlfriend, she’s more than a wife or a partner too. There’s nothing that I can call her that describes how much she means to me.
Well it’s been quite awhile since I’ve updated. Not a lot has changed for me, just trying to stick to my diet and doing everything I can to get my skin better. I’ve been going to the infrared sauna on a regular basis and it seems to help my skin a lot. The edema in my hands is greatly reduced and my fingers have finally started to heal up, hopefully they can stay intact. When my fingers are bad, life is bad. It’s like having deep paper cuts all over your fingers, so it makes normal every day activities extremely painful. I’m a musician too so I’ve had to take an extended break from making music while I deal with this issue.
I’m still basically only eating salads, soup and shakes. I have wild sockeye salmon every now and then, it’s one of the only options I can have for dining out. Salads, soups, shakes, salmon and seaweed, basically I can only eat things that start with ‘S’. Which I guess is why so many people on social media have recommended that I ‘eat shit!’
Other than that, I’m just drinking a lot of nettle tea (also seems to be helping with edema/joint issues) and I’ve been taking a few different supplements prescribed by my naturopath: probiotics, iron support, inflammation support and one to kill harmful yeast. Also been taking L-glutamine (2-3 tsp/day), that seems to be helping heal my gut as well.
I recently went to Portland and learned once again, the hard way, that I can’t tolerate coffee or caffeine. But seriously, how are you going to go to Portland and not have coffee? The whole city was built on coffee, craft beer and donuts. I was able to avoid 2/3 but I have a serious weakness (ie: addiction) to coffee.
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: