This is a personal blog. I am writing this to collectively share my story with my patients and friends without having to individually tell all of you. If you are interested, please continue reading. If you have stopped by here to find out information regarding health and wellness, you’ll find some of that in this entry; but the intent of this blog is to just share my story. Fair warning: it’s probably going to take a bit of time to get this all out and you may learn some personal things about me that you didn’t know before.
The Back Story
I’ve gotten migraines since age eight. (I had a five year reprieve after I started seeing a chiropractor in my teens, but they returned in my early 20s.) Since eighth grade, I’ve randomly gotten “hives”. I call them hives, but they’re not true hives as they are not raised. I get a very warm, red rash on my face, neck, chest, arms, and upper back. In high school and college I was extremely self-conscious while wearing my sleeveless volleyball jerseys because my upper arms were almost always bright red when I was playing. People have always commented that I’m getting sunburnt (even if I’ve only been outside for 10 minutes and I know I’m not burning) whenever I’m in the sun. When I graduated from Palmer, I chose a high-neck dress because I had to speak at the convocation ceremony and knew being nervous would make my chest get red. These symptoms on their own are all just a little weird, but other than the migraines, they are more of a nuisance than hugely problematic. And after minimizing gluten and dairy in my diet, I recognized that the hives were coming as a result of exposure to those; I also was getting less frequent migraines. Once cutting those ingredients completely out of my diet before getting pregnant with Eldon, I stopped getting migraines and was only getting hives briefly when exposed to heat or sun.
After Eldon was born 3 ½ years ago, I’d had some gastrointestinal issues and also started getting hives again randomly. I related this to the antibiotics I’d taken during labor and decided to do the Autoimmune Protocol (AIP) diet to help heal my gut from the damage the antibiotics had done. I did this around 10 months postpartum and after about two months I was able to go back to my normal way of eating: no refined sugars, no grains, no legumes, no dairy (Paleo). The hives went away and I felt great. My skin would still get red when I was out in the sun, but it wasn’t as obvious or hot-feeling internally, so I just attributed it to my having sensitive skin (known as skin photosensitivity).
About five months ago, I got out of the tub and saw my reflection in the mirror. I had been co-bathing with Calder, so it wasn’t a particularly warm bath, but my cheeks were bright red. And they weren’t just rosy; it was a rash that went across the bridge of my nose and down both cheeks, which was a little different than my typical pattern. I recognized this as a malar rash and immediately diagnosed myself with systemic lupus erythematosus (SLE or lupus). A malar rash is also known as a butterfly rash and is a classic sign of lupus, but isn’t pathognomonic. People associate malar rash with lupus the same way that we associate someone wearing green on March 17th with them celebrating St. Patrick’s Day: it isn’t always true, but a lot of the time it is, and the association is there. My diagnosis was immediate because the years of “weird” symptoms I’ve had combined with my recent onset of additional “weird” symptoms all would make sense under the umbrella of lupus.
After Calder was born, I started getting hives again and had some mild GI upset – nothing major, but I was a little more gassy. I began the AIP diet again around two months postpartum. I’d been doing this for about two weeks prior to seeing the malar rash. My GI symptoms were already subsiding by that time with the implementation of the dietary changes, so I had been really surprised that my skin wasn’t improving; the malar rash tied everything together that this was possibly bigger than just some GI disturbance from recent antibiotics. I told my husband Chris about my thoughts; he told me I couldn’t diagnose myself, so I scheduled an appointment with my Naturopathic Doctor (Dr. Dishman) and one with a new primary care provider. (I did argue with Chris that I was well within my scope of practice to self-diagnose given that I am a doctor.)
Lupus is known as the great mimicker, and is often undiagnosed or misdiagnosed for years due to the fact that it has a lot of different signs that mimic other conditions. I looked into lupus and its many forms and discovered that I present with 5 out of the 11 criteria for diagnosis; 4/11 constitutes a “likely lupus” diagnosis. I came to terms with the fact that it was likely that I did have some type of autoimmune disease, and actually started looking forward to treatment. Chris was concerned that this meant I was going to die. Of course I am. But it’s not likely that I’ll die any sooner from this than I would have; my health is a priority, so I’m not going to let a diagnosis change that. And I explained to him that I was just as healthy as the day before; I simply had a reason behind my “weird” symptoms that I’d never been able to explain. Given how quickly I was responding to this possible discovery, it was likely that I could keep things from getting worse rather than trying to fix them after they’d gotten bad.
I visited Dr. Dishman, and she was exactly what I needed. She practices functional medicine from a Naturopathic standpoint; she doesn’t see the body as broken, but rather as needing some assistance or guidance to reach its full health potential. She was so nonchalant about the possibility of this diagnosis that I realized how much emphasis I’d put on it. After meeting with her and discussing the tests we’d do and treatment options, I had more of a feeling of, “So what if it’s lupus? I’ll just get as healthy as I possibly can and keep flare-ups (of whatever this is) to a minimum.” (Plus she told me that I could add eggs back into my diet and test out some other foods I’d been omitting, so I was extremely happy about that!)
She ran a few tests and we got those back. They revealed mild intestinal hyper-permeability, a gram negative bacterial infection in my gut somewhere, and very limited function of my adrenal glands (low total cortisol production, low free cortisol, and low daily free levels pattern). I wasn’t expecting the adrenal dysfunction, but I’d anticipated some gut dysbiosis of sorts. Dr. Dishman warned me that any competitive exercise would impede my very limited adrenal function. I understood and agreed with her that returning to CrossFit anytime soon would be a poor choice for my health. But she and I both agreed that I need to exercise, so I explained how the BIRTHFIT Postpartum Programming was more of a postpartum rehabilitation course and that as workouts progressed I could keep myself at a fairly low level of intensity. We decided I would continue with that programming. I stuck with the AIP diet (plus eggs!) and added in a ton more probiotics and some other new supplements. Unfortunately, Calder was extremely sensitive to the adrenal supplements I started taking, so I decided to quit those only a few days after starting them.
Things were going okay; I was seeing improvements in most of my symptoms despite not being able to directly treat my adrenals. Then I got a massive migraine. Since I’ve had migraines on and off for over 20 years, I’ve had a variety of severity. Sometimes they’re horrific and sometimes they’re just a headache that prevents me from seeing for a little while. This one floored me. I couldn’t see due to a continuous scintillating scotoma for 4 ½ hours, I threw up, and was in so much pain all over that I legitimately thought I was dying; I slept restlessly for 12 hours. It was the worst migraine I’d had in six years. I was a little irked that I’d started some new supplements, kept with my AIP diet, and was keeping my stress as minimal as possible, but still had such a terrible migraine. But my skin was getting inflamed less and less often, so I was still optimistic. At my next visit with Dr. Dishman, she ordered stool testing, which involved me pooping into what legitimately looked like a french fry container. This would allow us to figure out the bacterial infection in my gut so we could decide how to treat it.
When I had my first appointment with my new PCP after the holidays, I told her my symptoms. She gave me a clean bill of health otherwise, but we ordered an ANA (antinuclear antibody) test anyway to see what it showed. An ANA is a baseline test for autoimmunity that is kind of like that green shirt on St. Patty’s Day: it might mean something or you might get a false negative or false positive. My hives were diminishing (except when I was served something that was “AIP compliant” that definitely wasn’t – then I ended up getting hives everyday for a week straight; I actually determined that the migraine may have been caused by that exposure). I figured my ANA would be negative, but when I got my results back a few days later, it was positive. The test also includes patterns of the antibodies and what those patterns are typically associated with: I tested positive for SSA (which was likely indicative of Sjögren’s Syndrome).
I (unrealistically) hadn’t been expecting a positive test, let alone an additional finding. Sjögren’s was something I’d learned about in school, but had to research it in order to refresh my memory. All I could remember was a swollen neck and dry eyes. And I had neither of those – wait, yes I did. My eyes were so dry when I woke up, but I’d just been attributing that to the early postpartum period and frequent wakings overnight. But no matter how many times I woke or didn’t wake, my eyes felt like they were cemented shut. It took significant work to get them to actually open. (I had stopped wearing contacts about two years ago after doing some eye rehabilitation because it always took me a while to be able to put my contacts in upon waking and they were never that comfortable to wear. Maybe it was because my eyes were always so dry.)
So now I know. I have an autoimmune condition, and most likely two. In talking with Dr. Dishman, some other colleagues, and doing my own research, I think this has been the case all along; pregnancy just happened to bring these conditions to light. And it actually made me realize some other symptoms that I have were likely a result of these conditions. These include frequent nose and mouth ulcers (yes, I said nose ulcer; it’s as comfortable as you might think), extremely sensitive toes, and occasional blepharitis (inflammation of the eyelids). Sjögren’s and lupus both explain all of these “weird” symptoms in addition to my photosensitivity, hives, and possibly even the migraines.
I tried introducing some more foods and was able to incorporate some seeds and spices into my diet. Peppers and tomatoes will make my entire face warm and red for a period of several hours; it almost looks as though I’m massively blushing, but it doesn’t diminish. Nuts cause GI disturbance, so I’ve basically stuck with a nut-free, nightshade-free Paleo diet. I’m perfectly fine with that, as my symptoms have continued to diminish. Since the weather has been mostly nice, I’ve spent lots of time outside, and my photosensitivity is almost nonexistent at this point.
The Moral of the Story
While this is a ton of information (believe me, I know; I’ve been processing all of it for a few months now), I hope what you’ve come to understand is that through diet, lifestyle, and supplementation, I’ve been able to improve upon my autoimmune condition(s). It’s not always easy, but I am choosing to live well rather than just accept that I’m bound to get worse. I’ve been looking into rheumatologists to consult with, but I haven’t found one who is highly recommended, and want to work with someone who values the human body as much as I do rather than someone who will automatically assume I need immunosuppressants and anti-inflammatories. I don’t need medication to manage this right now, as the changes I’ve made have already significantly diminished my symptoms, but I would like to have a trusted MD to discuss options with if necessary.
If you have an autoimmune condition, I highly recommend working with a functional medicine doctor. Rather than resigning to a life controlled by your autoimmune condition, you can choose to improve your health and control your own life.