This post is about frustration. My frustration. With my [expletive deleted] autoimmune disease that seemed to be improving dramatically in the late spring, then flared after eating tomatoes in July. And three months later, it’s still not getting any better (although thankfully, I seem to have stabilized and am not getting any worse). I get that nightshades are a problem for me, but what happened? Not what happened to cause the flare (clearly tomatoes and stress), but why is it taking so long to heal? What am I doing wrong? Or maybe more importantly, what was I doing right before?!
The reason why my blog has so much autoimmune disease content on it is because I personally suffer from an autoimmune disease called lichen planus, a skin condition similar to psoriasis where itchy, painful, scaly purple lesions cover my ankles and shins (I have had lesions on my wrists and forearms in the past, but these have fortunately not reappeared with the current flare except for a couple very small spots). Understanding which diet and lifestyle changes can mitigate autoimmune disease is something I am personally vested in and care deeply about. I am constantly trying to understand the various facets of the paleo diet autoimmune protocol, research nutritional and herbal supplements that may help, and tweak as many different aspects of my diet, lifestyle and environment as I can to get a grip on my disease.
So, what was I doing right in May and June that saw such dramatic improvement? I was following the autoimmune protocol (with the notable exception of occasional bites of nut- or egg-containing foods). This was before I gave up coffee (yes, for those of you keeping track, I am still too chicken to try reintroducing it). I spent a good amount of time outside (but I was still outside a good amount after the flare too). I went on an amazing weekend trip to the beach with my family (stress relief?) and got a sunburn (vitamin D?). I got sick immediately upon returning home (did I take any immune support supplements like zinc, Vitamin C or Echinacea? I can’t remember, but it’s likely.). I didn’t wear any makeup for a few days between the vacation and being sick (I know my make-up is gluten free, but maybe there’s a chemical sensitivity piece to this puzzle?). I was eating similarly to how I eat now (maybe more coconut oil because I was drinking it in my coffee?). I was getting about the same amount of sleep as I am now (and I’m sleeping way more soundly these days which should help!). My activity level was about the same. Am I more stressed now? Even though I am sleeping well, I do feel quite tired, but that may just be a symptom of the flare. Do I need to go back to the strictest version of the Autoimmune Protocol for a while and the reintroduce the foods that I seem okay with? There’s just nothing obvious and it’s so frustrating!
Being frustrated makes it harder to comply with a very restrictive diet. For me, the hardest part is sticking with the low sugar aspect of the autoimmune protocol. I’m hanging in there, but I find it’s more of a battle and much more willpower and discipline is needed these days than usual. I have added some supplements in the last couple of months (notably Fermented Cod Liver Oil and L-Glutamine), and these do seem to be helping and I think are a large contributor to the fact that my lesions are no longer growing. I am working to switch up any supplements I was on that had potentially irritating fillers (mostly trying to steer clear of magnesium stearate). I am also in the process of going chemical-free in my house. I gave up shampoo in late April. I am in the process of giving up my skin care products (and this one is tough for me because I’ve always liked them!) and moving to just using Tropical Traditions Gold Label Coconut Oil on my skin (actually, my skin is looking pretty great so far!). I am giving up makeup on a trial basis (this one is hard!). I didn’t like the Tropical Traditions deodorant so I’m still trying to find a chemical free solution for that (next thing to try will be making my own). I have switched to Tropical Traditions liquid hand soap (which I LOVE! I’m even using it to shave my legs and it’s awesome). I have stopped buying our old cleaners and we are switching to a combination of different chemical-free cleaners and using vinegar too. I am giving our tap water a very critical eye and am making an effort to only drink filtered water (I already did this for straight water, but I’m also trying to use filtered water to make tea and steam veggies etc.). I feel like I’m constantly tweaking, constantly trying to find my missing link. And the more I research and learn, the more possible culprits there seems to be.
When we recorded this week’s episode of The Paleo View, we had Diane Sanfilippo of Balanced Bites and author of my absolute favorite paleo resource book Practical Paleo (seriously, I cannot recommend this book highly enough. You can read my review here). Diane is one smart woman plus super nice (is there any better combination?!). She was kind enough to chat with me a bit about my disease and what I’ve tried so far after we finished recording. Very reassuringly, Diane confirmed that I’m on the right track. She had some good supplement ideas, which I am going to try (changing up my vitamin D3 supplement, adding more fermented cod liver oil, trying a gamma linolenic acid supplement, using the Green Pasture Beauty Balm on my lesions, going to a tanning bed, and continuing with my efforts to reduce chemical exposure by changing beauty products and household cleaners). I will be doing my best to change only one thing at a time, so this may take a while. But, it helps me to have a plan.
Diane also had something really important to say that I needed to hear. Sometimes these things just happen. For people with autoimmune disease, there is no cure. The disease can be in remission for years, maybe our entire lives, and it feels like it’s gone, but it isn’t really. You can do everything right and still have a flare (the converse is true too; some lucky people can do everything wrong and still reduce symptoms). Lichen planus is known for flaring up for 3-5 years and then mysteriously subsiding. I hope I don’t have to wait years. I hope I can figure out my missing link. There is much more that is not understood about autoimmunity than understood. And there is so much that is individual. It’s about much more than just diet. And time is such an important factor. I might be doing everything right and all I need to do now is be more patient. That’s not easy.
So, what do I do when I’m frustrated? I take some deep breaths and try to focus on the positive. I have a plan for the near future thanks to the brilliant mind of Diane Sanfilippo. I have an amazing paleo support network developing around me because of my blog (that means you!). My lesions are no longer getting worse (big sigh of relief) and I do not have to slather my skin with steroid creams to make it through the day. Actually, that’s pretty positive, isn’t it? Maybe all I really need to do is redefine success?