When we last left off on my health care drama, it seemed like we were headed face-first into a clear diagnosis—thyroid dysfunction. Every health care professional I saw was positive that was what was going on with me. In fact, after our first appointment, my new endocrinologist said to me, “I’d bet money your thyroid is going haywire.” Well, I should have taken the bet, because kids, my thyroid is AS NORMAL AS IT CAN BE.
And not “normal” like I’m at the top or bottom of a distorted range. Not “normal” as in they didn’t run the right tests. Not “normal” as in the lab messed something up. Multiple lab tests from multiple healthcare professionals over the course of weeks spanning the entire range of thyroid function—all normal. And not just normal, even optimal according to most thyroid disease advocates, my functional medicine MD, and even my two naturopaths. My thyroid is apparently rockin’ it, kids. Even my thyroid nodule that was so big I could see it in the mirror back in May, has shrunk to where I can’t even feel it without basically putting myself into a choke hold.
Which, in theory (and in actuality, I know) is great news. I mean, not having a chronic, incurable thyroid disorder? Awesome. Exceeppppptttttt, we still don’t know what’s going on with me. At least, before, we thought we had an idea. And with that diagnosis would have come a clear treatment plan and steps to improve my life. Now? Not so much.
Here is what we do know. My white blood cell count is bouncing between normal and high (but not off-the-charts high). I had an echocardiogram which discovered some mild damage to my heart muscle (they’re calling it “post-viral carditis”). And I tested positive for a virus called Parvovirus B19 (not the same Parvo that is so scary for us dog lovers). You’d think that was a slam dunk—it’s just a bad virus!
Except, Parvovirus is usually considered an incredibly mild virus. In fact, most adults don’t even show symptoms. In a young, healthy, non-immune-compromised person like myself, Parvovirus shouldn’t be more than a blip on the radar if it even shows up at all.
Right now, my medical doctor is working on the assumption that this is just a really nasty virus (maybe Parvovirus, maybe something else), and we are in a wait-and-see mode on the conventional medicine side of things.
On the other hand, my naturopath is pretty much convinced I’m fighting Lyme disease (although, legally, she can’t actually diagnose me in the state of Indiana), and has been giving me all kinds of treatments, supplements, and life-style changes to help boost my immune system to fight it.
I’ve had two Lyme tests come back negative, but apparently they are notoriously inaccurate—missing up to 55% of cases. I’ve been referred to what is called a “Lyme-literate” doctor (who I actually see this afternoon—woohoo!) who will hopefully dig into it a little bit further. I do have a history of tick bites (hellloooo, country livin’), and my neighbor was just diagnosed with Lyme this summer—so it’s plausible enough that it’s worth delving into more. If nothing else, I’ll feel better knowing I can rule it out as much as possible.
Probably the most important update is this: I’m feeling better. Not remarkably so. Honestly, not even to a fraction of the level I was 10 weeks ago, but definitely better than I was three weeks ago. And most importantly, I’m not feeling any worse which wasn’t the case for a month or more. Every day I felt worse. Every day brought some new, scary symptom. Now, I feel like I’m climbing back up the hill. It feels like I have 10,000 steps to climb to get back to where I was, but I’m at least out of the foam pit (those things are SO hard to get out of!) at the bottom of the hill.
And, I’m going to be honest, I’m giving myself almost all of the credit for climbing out of the foam pit.
My wellness has been my career and hobby over the past six weeks, and I know that sounds decadent (and I’m extremely grateful to have the resources and support to pull that off), but it’s been a necessity. At some point along this journey, I decided I didn’t need a diagnosis to start healing, and it’s the best thing I ever did.
Would it be easier to know exactly what is going on and exactly how to fight it? Sure. But I’m pretty self-aware, and I know what things make my body happy—getting enough sleep, drinking enough water, getting out in the sunshine, eating a lot of vegetables, being creative, reading, laughing with my kid, talking to my husband. And those things are all just as important as getting a pill or other medical treatment to help me heal. So, I’ve been doing my own healing.
My Healing Protocol
A few weeks ago, I decided to take things in my own hands and craft my own self-treatment plan. Back then, I thought I was for sure headed on the path to a thyroid disorder, so all my plans started with that in mind, but as it turns out, most of the stuff you do for a healthy thyroid is what you do for a healthy body in general. So we’re keeping the course even though my thyroid is all good.
And I’m feeling better. Is it placebo effect? Is it a virus just running it’s course? Is my very own healing protocol actually working? Honestly, I don’t care. Not even a little. I’m feeling 10% more like myself, and I’m not questioning it.
Reclaiming the Sanctuary of Sleep
I haven’t slept through the night in four years. It started when I was pregnant (and so sick) and continued when we decided to be a cosleeping family. Cosleeping morphed and changed as our little nugget grew older (we night weaned, she got her own bed next to ours, etc.), but it still meant I was sleeping with a 95th percentile three year old kicking, snuggling, hitting, and calling out to me. I literally can’t even remember what it is like to fall asleep and then the next time you wake up, it’s morning. Do people actually do that?
Then, this whole health issue started, and it greatly impacted my sleep. I have bad heart palpitations that make it almost impossible to get to sleep, and so instead of being able to fall back asleep within a few minutes when I’d be hit or kicked in the middle of the night, I was stuck at 2am staring at the ceiling listening to my heart beat out of my chest for hours. I was maybe getting four or five hours of sleep total. Which, hello, is not the path to healing.
We talked it over as a family, and we decided that it was time for Mama’s sleep to become a priority. We moved Juni into her own little nook right off of our room and assigned Dada all nighttime parenting duties going forward.
It (obviously) hasn’t been totally seamless, but mostly, the kid has ROCKED the transition—she was ready for her own space as well—and I’m slowly, but surely, getting used to sleeping without a 35 pound projectile flying at my kidneys throughout the night. We loved cosleeping (and honestly, I still think what we are doing is a form of cosleeping—Juni is still very close to us), but it was time for us to all have a little more sleep independence, and so far, so good.
Another huge part of reclaiming sleep has been to bring myself back into a consistent and relaxing bedtime routine. It’s something we make sure to do with Juni, but I stopped giving myself the same time and attention (hello, that’s motherhood for you). I now am completely screen free after 7pm—no computer, no TV, no phone (more on that one in a sec). I spend my evenings knitting or coloring or reading or doing something else that brings me joy, but doesn’t stimulate. It is so tempting to zone out in front of my phone or TV after Juni is in bed, but I find I sleep better, and I’m a much happier person if I don’t.
I’m also working very hard to reset my circadian rhythms (AKA: getting my body used to idea that light=awake time and dark=sleep time). I get outside for at least 10 minutes as soon as the sun is up. I only use amber light bulbs after sunset, and like I said, no screens after 7pm. I’m also making sure I’m asleep by 9pm (and most nights closer to 8pm). It felt a little strange at first, but it has definitely been working. I can feel myself winding down almost the second the sun starts to set.
Learning How to Destress
When I first got sick, and I was talking to every health care professional I could find, most of them kept asking me the same question—what do you do to relieve stress? And my answer was always the same. I don’t have a particularly stressful life (I’m my own boss, I work from home, I have a great family, etc.). Most people I talked to were fine with that answer, until one wasn’t. Shout out to my therapist for this gem: “But good stress is still a kind of stress. And it still needs to be relieved.”
Mind. Blown. I mean, intellectually, I knew that some of the happiest events in your life are also some of the most stressful (babies, marriages, new homes, vacations, etc.), but I never really tied it to my day-to-day life. Just because I love my job and my family, that doesn’t make it UNstressful. And it’s just as important to find a way to relieve that positive stress as it is to relieve the stress from a crappy boss or frustrating commute or mean person on the street.
So, in that context, the answer to the question “what do you do to relieve stress?” is nothing. I used to garden, but I didn’t put a garden in this year. I used to do yoga regularly, but I don’t really anymore. I used to go to the gym, but I don’t. I used to knit and take dance classes and sew and craft and cook (that was a hobby before it was my job!) and hike and holy cow, I have absolutely nothing in my life that relieves stress anymore.
I think it may be easier to justify self-care when it feels like a necessity—I need this massage today after that terrible week at work. But when your life isn’t particularly (negatively) stressful, self-care can so seamlessly be put on the back burner.
I’ve been working on this from two angles—first are hobbies. Cooking and writing this blog used to be my hobbies, and then they became my job, and I never refilled that “hobby” spot. In fact, I started to strip away my other hobbies because I loved my job so much. Now, I’m bringing back in things that once brought me joy but have absolutely no ties to money—knitting, reading, coloring, and gardening (although, Fall is the worst time ever to get back into gardening). And I’m going to explore some new things that I think may or may not be a good fit.
The second front for this attack on stress is what I’m calling Radical Acts of Self-Care. This is the category for things that I never would have found the time or money for before or, more tellingly, never would have given myself the permission to do before even if I did find the time or money. I’m talking massages and acupuncture and floating and saunas and whatever other new-agey thing pops up and seems like it might help me destress. So far, acupuncture and the infrared sauna have been my favorites. I’m trying to do something new and “big” like this once a week—not only to just try it all out, but to try to get in the habit of it not feeling so “luxurious”.
The financial investment is still a tough pill to swallow (these kinds of hippie-dippie, crunchy granola things run in the $50-$100 a pop range in our area), but I keep trying to remind myself that I just got a bill in the mail for $1600 for a 90 minute visit to the ER for a panic attack—so if I just avoid that once, I’ve already paid for 3-6 months worth of Radical Acts. I guess you gotta invest in your health at some point, and I’d much rather do it through massages and acupuncture (and good food!) at the front end than IVs and EKGs later.
Exploring What Foods Bring Me Wellness
It’s probably considered burying the lede to put the part about dietary changes 2000 words deep into a post on a food blog, but I have to be honest, even though the dietary changes I’ve made over the past few weeks sound dramatic, they really haven’t felt like that big of a deal at all.
I’m starting my fifth week of the Autoimmune Protocol Diet (AIP for short). The AIP diet is basically a temporary, supercharged version of an elimination diet. You strip away all the most common inflammation-causing foods for a period of time (I was originally planning on doing four weeks, but I feel so good, I don’t know if I’m ready to change things up yet), and then slowly reintroduce them to see if they bug your system.
I have to be honest, I shrugged off the idea that my diet needed tweaked for a long time while feeling sick. I run a healthy eating blog! I eat healthy! How can that be the problem!?
And while that might be true, that my diet is healthy in the relative sense, that thought process didn’t take into account my needs on a micro scale. And that’s what the AIP is. It’s basically stripping away your diet to mostly “safe” foods (that don’t cause an inflammatory response in most folks), and then challenging common triggers to see what works and doesn’t work for your body. Your body. Not the nutritionist who told you not to eat gluten. Not your sister who can’t eat eggs. Not the textbook that told you beans were good for you.
Doing an elimination style diet is pretty much as close as you can get to a scientific study on your own body. And I figured it was high-time I invested some research time into myself. (Do you sense a theme in this post? Investing in myself—and the various ways you can do that.)
Many health care practitioners even recognize an elimination diet as the gold-standard for identifying food intolerances. You can get food allergy testing done in a lab or doctor’s office. But often those only display true, dangerous allergies (not just a slight or even moderate intolerance or sensitivity). Basically, there is a whole continuum of how our bodies digest food, and just because you aren’t at one extreme (allergic reaction) doesn’t mean your body is happy you’re eating it.
Anywho, for now, following the AIP means I’m not eating grains (of any kind, not just gluten-containing ones), nightshades (tomatoes, peppers, potatoes), pulses (beans, lentils, peas), sugar or any kind of sweetener (natural or otherwise), nuts, chocolate, coffee, eggs, seeds, soy, or dairy (which I wasn’t eating before, so not a big deal to give up).
What I am eating? Free-range meat, wild caught seafood, a little bit of fruit, and an obscene amount of vegetables. I know it sounds really limiting, but I’ve been surprised by how having restrictions on my food has made me feel more free in the kitchen. We’ve been eating things like Turmeric Chicken Zoodle Soup and Pesto Spaghetti Squash with Turkey Florentine Meatballs and Sweet Potato Clam Chowder. I’m definitely not hungry! It’s been delicious.
The hope is that most of the foods on the no list can come back into my life at some point. For most people, they do after a period of healing. Some people even initially have an issue with a food, but then after a period of keeping it out of their diet, can bring it back in occasionally without any issues. The only foods I really miss are eggs and oats, but even those don’t feel insurmountable. I have to be honest, if you told me I had to eat chalk everyday for the rest of my life to feel better, I would. That’s how bad I was feeling, and how desperate I was to feel even a little bit like myself again.
Nurturing my Mind
Oh, my. Let’s get into some therapy now, shall we? As I said in my last post, I’m in therapy now (originally because I was diagnosed with an anxiety disorder—which my therapist whole-heartedly disagrees with—now because I like therapy, and it’s helping me work through other issues). And a theme we keep coming back to is how uncomfortable I am with the gray areas in life. I’m uncomfortable sitting still in a waiting room. I’m uncomfortable waiting for someone to call me back. I’m uncomfortable not knowing the answer to a question RIGHTTHISSECOND. And while that trait can be a positive attribute sometimes, when it comes to a health crisis, where you are pretty much LIVING in the gray area for weeks (or months) at a time, it can be a real detriment.
Being unable to live in the gray area during an illness meant that I was Googling EVERY single symptom I had repeatedly looking for answers. It meant reading hundreds of forum posts of people who even sounded a little like they were going through the same thing I was going through. It got to the point where it was becoming a compulsion. I was Googling something about my condition every 5-10 minutes. I was glued to my phone. And I was convinced I was going to be like these “forum people” who had felt this sick for decades.
And, of course, doing research and educating yourself is important. But it’s also important to be able to set that side of your brain down and move onto other things (like insignificant tasks such as eating and drinking). I wasn’t able to do that. I was so uncomfortable with the gray area of not knowing what was going on with me, I was making myself even more miserable by trying to get out of the gray area.
This has been a theme throughout my life, but it’s become really problematic during this. So, I’m working on it.
First step has been to PUT DOWN MY DAMN PHONE. Literally. I’ve been keeping it not-within-arm’s-reach for the past few weeks, and it’s been so helpful. Just the physical act of having to get up and grab my phone instead of having it right near me has done a lot to break the muscle memory of the compulsion. It’s okay to not know the capital of Uruguay right now. It’s okay to not know who sang that song back in 1995. And it’s definitely okay not to know if hair loss is a sign of me dying of a mysterious illness.
I’ve also been journaling, writing, and drawing a lot. Instead of Googling and researching every damn thought that comes in my head, I take the “hot” ones and work them out on paper. The others, I try to visualize as a bubble popping hovering my head. It’s okay for the “what if I always feel this bad?” thought to pop in my head. It’s not okay to Google it for the 400th time and read sad stories about how other people never got healthy again. So I imagine they are bubbles that pop, and then I move on.
I’ve also been giving myself a clear 20 minute window of “Worry Time” everyday. Where I am allowed to freak out, research, and Google my information-loving heart out. When the timer goes off, I go take a walk or make dinner or move onto some other task and that’s it until tomorrow.
I’ve also been working very hard on my mindfulness. I’ve always wanted to have a regular meditation practice, but I never really seemed to figure out how to make it work with my life. Well, nothing like your thoughts running rampant and crushing anxiety to get you motivated to work on your mindfulness. I spend about an hour every morning, right after I wake up and while everyone else is still asleep, meditating. I use mostly guided meditations through the Headspace app and YouTube. It’s been a really awesome way to start my day. I’ve also been using knitting to help me work on mindfulness. I’m not a very skilled knitter (and don’t do anything complicated), so the repetitiveness of each stitch, row after row, really gives me a chance to work on calming my mind.
The latest big mental health hurdle for me has been learning to protect myself emotionally. I always felt guilty or selfish if I didn’t know the latest scary news or get involved with the latest cause, and I really think there is value in having deep, lifelong compassion for others. I don’t think my empathy is a negative trait, but I do think I have to learn to control it. And I just have never done a good job of that.
In my current emotional state, reading horrible news stories sends me into such a state, I can’t help anyone. I’ve had to learn to release my guilt over being disconnected—if I’m locked in my bedroom in the middle of a panic attack, I can’t help anyone. What I can do—work really hard to heal my mind, body, and spirit right now, and then come back feeling stronger, more empowered, and more ready to fight for the causes that matter to me. Disconnecting from the news and social media may seem cowardly to some, but I’m choosing to see it as a sign of strength. This is what I have to do right now to be a contributing citizen of our beautiful planet in the future.
So, there you go. That’s what I’m doing right now to heal my body, mind, and spirit (even though I don’t know what’s wrong with me). I also have some other ideas for healing, but my therapist and I are trying to work on me not getting so cart-before-horse with planning (guilty)—so I’m sticking to what feels doable for now, and we’ll revisit those later down the road.
As always, thank you so much for your kind words, support, and love. I can feel it. All of it. I feel your email messages. I feel your Instagram messages. I feel your comments. I feel your letters, cards, and packages. I feel your love. And I think it’s a huge part of my healing. Knowing you guys are out there cheering me on is just…everything. This community we have built is just remarkable, and I’m so honored to be part of it. <3
I’ll keep you updated as I can! Most days, I share on Instagram stories the latest tidbits of information—so make sure to follow me over there if you haven’t already.