What I've learned by being the healthiest sick person I know - part one
Updated: Apr 30
It’s been a very long 15 weeks. Some of it is a blur. That’s how pain is, it leaves you wondering what’s real and if it will ever end. Mine has been due to, at the root level, my autoimmune illness (AI), Hashimoto’s, hypothyroidism.
So I’m going to share what I’ve learned about this, in more detail than I can with social media posts, because quite a few people have reached out to me regarding their own suffering, confusion, and medical establishment disregard. I hope this helps you or guides you to where you need to go.
Hives or urticaria. Chronic hives. The kind that keep you from wearing proper clothes or leaving the house much or living any kind of regular life. You can’t sleep when it’s bad and there’s no end in sight. That’s been me all these weeks. Itching, swelling, burning, prickling, pins and needles has been my life. Kind of takes up a good portion of the day and night - I am just starting to get full nights sleep again. The hives are starting to leave, I am starting to feel better. I even ate at a restaurant a couple of weeks ago and treated myself to a glass of Cava. And last week, we went down to Utah to have four days on the river. Getting away and into the warmth and sunshine and desert sand was good for my soul. But yes, I still have hives. In fact, the other day I ate something I thought I could, and had a sudden flare up the next day which luckily has subsided but I’m being vigilant and really paying attention.
Hashimoto’s thyroiditis. That's what I was diagnosed with in my early twenties. Not long before that, I had my first, and second, hive outbreak. It was so bad, I used a steroid, which suppressed it for a week. The hives came back. I realize now, that for these thirty years of on and off hives, I’ve lived in fear with every itch, every bump, every red mark on my body. I’ve never traveled without vitamin c, just in case. It’s always amazing to me what we can get used to and normalize. A couple of years before the first outbreak, I also had my first real issue with my gut. My first very emotional breakup and such stress from it that I couldn’t keep food in me for three weeks. This is all leading me to what I’ve learned recently about autoimmune illness. I’d never made the connection before - gut, thyroid, AI, hives. I never saw them as connected in any way!
A few years ago, I’d posted here about going on the AIP (autoimmune protocol) diet and seeing what would happen. My thyroid levels changed drastically and I cut my thyroid medication in half. It was all good news. I just couldn’t stick to the diet consistently. This has shown up as another theme - my desire for food that’s unfortunately around me, and having to walk away from it more than I could. My brain can handle a cookie one day, a cookie the next day, but by the third day it wants a bowl full of cookies. That’s the kind of thing I’ve noticed. I’m surrounded by people who can eat whatever they want, for now. I cannot, but I end up feeling as invincible as they seem - and I ‘fall off the wagon’. Believe me! The aroma of the pizza Nate made last night, while being disgusting, made me want that pizza really bad! I also needed to acknowledge that there are times when I engage in emotional eating; stress eating typically. I just really want to think, oh cool, I’m healed, now I can live like everyone else! Clearly I cannot and honestly, most people eat crappy food anyway so why would I want to do that?? For now let’s just say I’ve gone down the rabbit hole again and every time I do that, I learn more about how messed up our food is. Don’t get me started on oils, glyphosate, flours, corn, depleted and lifeless soils, and just our mass produced industrial food system. I’ve been sickened by it for decades, both literally and figuratively.
So that’s what happened; I decided I was like everyone else and just went for it!! Thanksgiving became Christmas Stroll became Christmas became hockey and Winter Classic weekend. Hives would start, I would clean up my act, the hives would go away(or so I thought), and then I would get back after the fun and food and drink, until finally in mid January, the hives exploded. Weeks of awfulness on my eyes. I’ve never experienced anything like it before. Then it moved down to my neck and chest with a minor ninth inning spread to my upper arm. So far, thank god, this is where it’s stayed, gotten a little better, cycled back here or there with less intensity.
Yes, I tried a steroid, which did work for me about 8 years ago and two years ago; not this time. Just like thirty years ago, steroids weren’t working. Yes, I tried antihistamines. That’s another part of the story, but no they didn’t work either.
So! I know at a deep and personal level, that allopathic medicine is not so great with chronic illness... what I mean by that, is that it sucks with chronic illness! If all you want is to try to mask your symptoms, putting off until later an illness or worse, creating a new condition due to whatever pharmaceutical they prescribed - then western medicine is the way for you. I know it isn’t for me. Read my ‘about’ section. I first started learning about herbs to get rid of my chronic, horrible sinus infections, made worse and more constant by allopathic medicine. I’ve managed my hives for three decades. But this time, none of my usual tricks were working. What was going on???!! Vitamin c to tolerance didn’t work and it works! Taking it to tolerance means I was taking a lot of vitamin c, every hour, until my stomach grumbled, and then backing off a bit. I was taking 10,000 mg a day and my body was soaking it all up! I figured I must’ve really pushed myself more than I’d realized. Plus, I can see now that I was super stressed which is not at all helpful with getting hives to go away.
I changed my diet, again. I started to get my gut in order, again. I read about the histamine bucket. This is when your body doesn’t process histamine well, so it builds and builds until it overflows. For me, this overflow comes out on my skin. Let’s go over that! I’m lucky it comes out on my skin. Otherwise ALL that inflammation would be within my body, causing terrible havoc on my organs. This case was so bad, I know I had inflammation within as well as on the surface. I changed my diet even more. I changed my supplements. Thanks, once again, to my friend and savior and hydro colon therapist, Christina Love, I got on some raw supplements and my gut changed for the better within a day. That’s a nicely responsive body!! Please please please. When the MDs say to you, “you’re just sensitive” or “you’re just overly sensitive”, don’t take that crap on! First, hell yes you’re sensitive and that’s a good thing mostly. Second, if you have autoimmune illnesses, being sensitive is exactly the point!! And third, immediately switch that crap to say to yourself, that you’re responsive. You are. When I introduce a new food to check for inflammation, I know within a day, sometimes immediately, if that food is causing inflammation. Yes, I pay attention, but also, my body is incredibly responsive and saving me (when I listen) to a bigger annoyance or physical issue.
I also had found a lovely hydro colon therapist in Billings, since Christina lives so far away! Finally! Jill Ricci - ask me for her info. I went to her twice. Both times when I thought maaaaaybe I was getting better. I was still not prepared for how bad this outbreak was going to be, even a few weeks into it because I’ve never had hives this bad. Anyway, the day of the colonic I’d feel great, think yay this is working, and then the next day I’d be worse again. I was stirring everything up but couldn’t move it out fast enough and it would just get reabsorbed. Ugh. I could’ve gone everyday for a colonic and maybe then it would’ve helped but that could get really expensive and Jill has another job anyway.
My gut took weeks and a lot of deep breathing and of course belly massage (if you’ve had an appointment with me, you know it as abdominal therapy, YAM, or self care) to actually start to work properly again. Part of that was clearing out my liver for sure! I could feel with my hands, the inflammation in my liver. That swelling is gone now. But my hives were still really bad. I mean so bad, that at times I thought I couldn’t do it anymore, couldn’t live. I went for a walk and prayed for a tree to fall on me and kill me. I am not exaggerating and I wasn’t being dramatic. I was that miserable, that desperate, and that terrified that it would never end. Another friend, Debra Eberhardy, explained to me that all that craziness was the heat. My body was so hot and so full of heat and inflammation, that it was driving me insane. She also told me, the reaction I was having from that much heat was completely normal. Debra lives in Wisconsin and is a brilliant doctor of Chinese Medicine, a rabbit hole I’m tempted to go down even further. She told me she sees a lot of hives connected with autoimmune illness.
By then, I’d heard that before. First from my friend Denai in Ashland, Oregon whose friend had success putting her Hashimoto’s into remission by kicking out her EBV, taking a mushroom blend. Google EBV if you don’t know about it. Apparently there are cases of Hashimoto's (where your body is attacking its own thyroid) that the core issue is actually that the EBV is residing in the thyroid gland and the body is attacking the virus, not the thyroid directly. I know from years of this work that viruses can stay tucked away in the body for years, causing all kinds of trouble. Some new information was coming in and dots were beginning to connect even more. From there, I went to...yup, Google. I stumbled upon Izabella Wentz, who I’d known from the AIP diet days. She was a wealth of information about AI and Hashimoto’s. She even had the dosage for the EBV protocol and her team answers questions on her online articles. I ordered her book, used, for $6 because as you can imagine I haven’t been working a ton!
My gut was feeling better, so I was getting better, right??! Not so fast. This has been a very slow process. I’m going to stop here for now and let you catch up, ponder, ask questions, or do some investigating on your own. But I AM getting better and I am so glad I did it holistically and without what you’ll see were some insane recommendations from an allergist.
Next time, I’ll pick up here and start getting more into the details of Hashimoto’s causes and protocols, the negative side of pharmaceuticals, and how I went much deeper in this healing process.
Check these out - I looked like Nate was a little rough on me!