Welcome to my happy place of DIY, homemade, homegrown, handmade, nourished & crafted, whole hearted living. Finding magic in the mundane & growing some roots in the process.
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I woke up at 3:30 this morning with these words in my heart so here I am sharing even though my fingers are trembling. Funny how that goes. It has officially been one year since my diagnosis and the start of my autoimmune protocol. I’ve resisted saying anything because my checkup didn’t turn out the way I wanted. I don’t know why I have put off writing much about my diagnosis or this process other than I really just wanted to hit it hard, plug through, and make it go away. I think I thought that if I did everything I was told, 30 years of symptoms would *poof* be gone and I’d be healthy and whole.
The daily mantra I’ve repeated each morning during yoga and meditation is “I am healing, I am healthy. I am nourished, I am whole.” While I still believe I am healing and can become healthier, I think I need to embrace the body I am in and mentally reframe the word whole.
But, I’m getting ahead of myself.
A little background, since I recognize that I posted over on Instagram but, really, just left you hanging here on the blog. I guess writing it in this space made it feel a bit more permanent. Which, duh Missy, it is. But, as my sweet little sister-in-law has been gently reminding me, that’s ADHD. You know, avoiding and ignoring the stuff I don’t enjoy or like in hopes that they just go away. And obviously, that isn’t a healthy way to adult.
What can I say, your girl has issues.
At least I recognize what I’m doing now, so there’s that, right?
In September of 2022, I was diagnosed with hypoglycemia and an autoimmune disease similar to lupus. I don’t know the exact name of the disease, yet. I still need some expensive genetic testing. While we don’t know the name, we do know it is in the lupus family and causes my body to attack my own soft tissues.
For you long-time friends, you’ll remember my “autoimmune reaction to pregnancy” that caused vision & hearing loss + my sinuses to fall apart. Though my doctors didn’t understand what had happened or why, they did make it extremely clear that having more children was not medically advised. I’ve talked a lot about that loss through the years. It was absolutely devastating. Motherhood was just innate in me, coded into my DNA. It is the one thing I wanted to do and be all my life so giving the baby years up before I was ready nearly broke something inside. Don’t @ me about already having 4 kids, I totally get it. I have been abundantly blessed, but when you’re in the middle of something like that you can’t see past the end of your nose. It just is what it is.
In 2020, the week COVID shut down Utah, my youngest daughter was hospitalized with kidney failure. She was originally diagnosed with something called MPGN but after genetic testing, we discovered she didn’t actually have any genetic markers for that disease. Though treatment and autoimmune suppressants helped heal her kidneys, we were sent back to square one on the diagnosis. After a long 18 months of isolation and homeschooling, she was able to heal up and get healthy, and other than yearly testing and appointments, she’s doing well so we’ve kind of left it at that. Honestly, 2020 and 2021 are pretty much a hazy blur in my memory. It was survival mode and when you’re keeping a child alive, there isn’t really time to think about yourself. If you know, you know.
Along came the fall of 2021, to punch me in the face and smack me upside the head. We now understand that my autoimmune disease had been attacking my reproductive system for decades, but at the time my OBGYN was completely baffled. My organs fell apart, there was pre-cancer everywhere, and with my BRCA mutation, he had little choice but to take it all. It wasn’t until 6 months later, spring of 2022, that we fully realized I wasn’t getting better and I should have been. Thankfully, that is when I ran across a podcast interview with an autoimmune specialist. Listening to that hour-long podcast changed absolutely everything.
In July of 2022, I had dozens of lab tests done and by September I had a diagnosis and was working with 2 wonderful practitioners. For the first time in my life, I felt heard by the medical field. After decades of begging for help, for anyone to listen, I had knowledgeable doctors paying attention. Instead of throwing birth control and anti-depressants at me or saying it was all in my head (like the docs I’d seen before) they listened, deep-dived into my blood, looked for markers, came up with a plan, and then taught me healthy, practical skills. It was life-altering!
Life-altering. That being said and as cool as it is, AIP is freaking hard. Especially when you jump in head-first. All in. 110%. I’m not kidding when I say I did AIP. I DID AIP. There was zero cheating. I didn’t eat a treat or the yumminess I was craving, ever. Completely rigid. If I was doing it, I was doooooing it and I was hellbent on healing myself.
In the process, I’ve lost 35 pounds; a lot of that being inflammation and edema. The constant, daily headaches have become almost non-existent. My hair grew back. Can I get a Hallelujah? I stopped waking up in pain and going to bed in tears. This spring, I had my first clear mammogram and MRI of my life. Instead of strings of bad weeks, there are occasional bad days. The emotions are no longer in charge and for the most part, the fog is clear. I still have attention deficit issues, but hey, I’ll take it! Most of the time I have energy. Energy! For the first time in forever, for the most part, I feel like me. It has felt like a miracle.
They strongly believe my youngest has the same autoimmune disease so this process might have solved 2 mysteries. I just need to save up 10K to have us both tested. Why the heck are tests so dang pricey? $10,000 for 2 tests. What the actual… I digress.
After crushing it and cruising along with my autoimmune protocol, imagine my surprise this summer, when I started swelling more and getting tired again. When that feeling of unease started tingling in the back of my mind. And then, in August, when they found a new spot on my latest mammogram and had to do more mamms and ultrasounds. At my year appointment, 2 weeks ago, instead of the “You are healed!” cheers I was planning on, they told me that my liver is struggling again and now my thyroid too. They changed some things up and I will go back and retest in a month. If there isn’t improvement, I’ll be referred to an endocrinologist and start a new phase of treatment. Ugh. Needless to say, that wasn’t the outcome I had in mind. Such is life, right? When does anything ever go to plan?
Instead of talking about and working through it, I’ve been over here rolling in my feelings. Hiding from everything. Licking my wounds. I’m a firm believer that sometimes you’ve just got to get down and dirty, feeling ALL the feels, so you can get up and move on.
I guess it’s about time to get moving.
Looking back, I realize that I’ve been waiting. Sitting in some sort of holding pattern. Doing the work, yes, but doing it so I’d be “healed” and could get back to truly living. Maybe the Lord is telling me that I need to reframe my understanding of what it means to be whole. Maybe, I’m supposed to learn to love this body. Right now. To take care of her, nourish, and nurture her. Yes, absolutely! But, also to live in her. At this moment. As she is. Maybe she’ll never work the way I want her to, and maybe she is a little broken. And, God’s point is, that it is ok. Love her anyway.
I’ve put a lot of living, writing, creating, doing, and being on hold, thinking that I’d do it all so much better when I became healthy and strong. When my waiting was over and the season changed. But, in the wait, I have been missing out on so much magic, and that hurts my heart. Because if I have learned anything over the last 10 years it is to watch for the glimmers. And, what did I do when the shiz hit the fan? Straight up lost my vision. So, here I am publically committing to getting back to my true purpose… creating my own happiness. Finding magic in the mundane and leaning in. Fully. All in. No more waiting.
I am healing, I am healthy. I am nourished, I am whole. Right here, right now. In this body. As I am.
Embracing this autoimmune life. The struggles, weakness, and all.