Hey!
I'm Rae.
I want to share my story with you...
When I was in my late twenties, my health slowly deteriorated.
Over the course of a few years, symptoms crept up on me little by little - but I had a hard time thinking there could be anything "wrong” with me.
It started where I'd have an odd day here or there when I'd feel a little dizzy. I thought, maybe it's allergies messing with my sinuses, or my low blood pressure. And when I googled vertigo, everyone on the internet made it seem pretty normal as long as it didn’t last too long. Mine was certainly no big deal.
Then there were days when my stomach would hurt and puff up way past my "I can pull off a crop top" comfort zone. I'd feel a little embarrassed about my bloated belly - but let's be real - I'm a woman, and I've yet to meet a woman who doesn't get bloated from time to time. I didn't think it could be anything serious.
And sure, my left hip got "creaky" and "crabby" sometimes. But I figured it was just an old dance injury acting up.
I felt tired, but I mean come on, WHO DOESN'T?!
Somehow these things slowly became a regularity in my life.
I blamed it all on getting older: hormones changing, a slowing metabolism, lack of sleep, or too much to do. And no way did I think these things could possibly be related to each other.
But one day when I was physically too exhausted to get off my couch, I finally had a moment when I realized that yes, there was something wrong with me.
I had to take a step back and look at myself.
My left hip ached with deep, chronic pain - some days I had trouble standing alone on my left foot and even sleeping was painful because of it.
I’d had a couple bouts of intense vertigo, and a constant mild dizziness had somehow become the norm.
Most days, I had a stomach ache for at least an hour or two. My bloated belly was bad enough that I felt embarrassed to ever wear anything tight because of how "pregnant" I looked. And when I stepped on the bathroom scale (something I almost never do), I couldn’t believe that I’d somehow gained 10 pounds.
My hands sometimes felt "weird" - shaky and achey, and my tongue would frequently either burn or feel numb.
I realized I needed help.
I asked myself, how did I get to this point?
Let me explain...
I grew up spending most of my childhood in the dance studio (bunhead all the way), and my wannabe hippie mom had me eating broccoli and spelt bread and a daily multivitamin while other kids were having Lunchables and Mountain Dew.
My dance background and healthy upbringing led me to yoga and fitness as a I got older, and eventually took me down the path of becoming a yoga and barre instructor.
Being in the fitness world, I considered myself pretty damn health conscious. I was a believer in things like green juice and probiotics. “Sweat once a day” was a motto I tried to live by. I read fitness and wellness blogs and was in the know about all the up and coming health trends.
As someone whose lifestyle was focused on being health conscious, I brushed aside all my symptoms when I started to feel sick. I didn't think there could possibly be anything wrong with me!
In fact, I HATED the thought that I could be sick, because I did "everything I was supposed to."
And even though it seems obvious in looking back, it took me awhile (years, actually) to fully admit to myself that there was something wrong with me.
When I finally faced up to my health problems, I knew I needed to make changes and find answers. Fast.
I stopped teaching fitness.
I took a desk job with good health insurance and the stability of a 9-5 routine that I needed in order to heal.
After a handful of doctor appointments and several blood tests that checked for everything from celiac antibodies to thyroid hormones to amino acids in my blood to vitamins and minerals in my cells, I got my diagnosis. Hemochromatosis. Iron overload disorder.
One of those blood tests had included thorough iron panel, and when my doctor saw the numbers, she followed up with the genetic test for hereditary hemochromatosis, and it turned out I had two copies of the C282Y mutation.
So, I started getting phlebotomies (aka “bloodletting”). It wasn't that easy though.
I know some people can start bloodletting and BOOM right away they see big changes. Not me.
It took months for me to start to feel better.
During that time, I got an ultrasound of my abdomen, an MRI of my brain and my neck, an endoscopy, and a liver function test - because I just wasn't feeling "right."
The iron inside my body had caused inflammation, and that took time to recover from. Inflammation from excess iron doesn't just go away with one phlebotomy.
I went on a new healthy diet plan and had even more extensive blood tests done to test my immune system's inflammatory responses.
Healing was hard work - in the end, I gave up some of my favorite foods and learned to cook in a new low-iron and anti-inflammatory way, and kept up with regular blood donations.
It was a winding road to recovery.
On top of diet changes and bloodletting, I removed my IUD, worked with a nutritionist, had my poop studied, tried running (my least favorite form of exercise!), experimented with herbs, spices, and supplements, and researched (like crazy) the best strategies and methods for dealing with hemochromatosis.
I dedicated myself to doing whatever it took to heal myself.
And I decided to document my experiences here on this blog.
I want to help anyone going through a similar situation.
When I was first diagnosed, I felt alone - no one else I knew had even heard the word hemochromatosis before, and everyone I told about it thought it was pretty damn weird.
On top of that, I didn't have easy access to good information.
Advice from the internet (and even from my doctors) seemed full of contradictions, and to be honest, pretty outdated. I ordered a couple of hemochromatosis cookbooks; reading them made me feel like I was cooking in the 1950's.
Other than that, there wasn't a whole lot of information out there that was easy to understand. Ferritin? Transferrin? Saturation? It all felt overwhelming.
So, after hours of scouring the internet; getting my hands on every book, magazine, and podcast that talks about hemochromatosis; visiting multiple different doctors; measuring my iron levels on a regular basis; and trial and error with hemochromatosis-friendly recipes and my iron intake, I slowly learned how to take care of my body.
Understanding hemochromatosis has been a major learning curve, and it's the reason why I started this blog.
I'm constantly learning new information, trying new recipes, researching how hemochromatosis works, and doing whatever it takes to protect my body from the dizzy spells, achey joints, and agonizing gut pains I felt in my late twenties.
Just a heads up, I'm not a doctor or a nutritionist, and I don't know the perfect or "right" diet/lifestyle for hemochromatosis.
I've just been asking questions about how to live well with hemochromatosis, and I've been writing down all the insights and answers I can find right here.
talorae is my place to organize everything I've discovered about hemochromatosis (from hepcidin to polyphenols to smoothie recipes to cooking tricks to the best stretches for joint pain). But I also dive into other things that I think are worth sharing - plant-based food choices, yoga sequences, fitness tips, stress-management, and mindfulness….anything and everything that’s been helpful for me!
When I'm not caught up blogging on talorae, you can find me in a yoga class, walking my dog lil' P, crafting new “iron-fighting” recipes in the kitchen, watching re-runs of my favorite 90's shows, and drinking tea - oh and some red wine too!
I’d love to hear from you! Please feel free to shoot me a message here, or email me at hello@talorae.com
And, just in case you're curious, talorae got its name because of my Finnish grandmother. I spent a lot of time growing up around her. "Talo" in Finnish means "house," and talorae.com is my way of welcoming you to my little blogging home here.
The views expressed in this post are for informational purposes only. This post is not, nor is it intended to be, a substitute for professional medical/nutritional advice, diagnosis, or treatment, and should never be relied upon for medical/nutritional advice, diagnosis, or treatment. This information has not been evaluated by the Food and Drug Administration.
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