This is not the beginning. Perhaps it’s the middle, though for awhile now, it’s been feeling like the end. Like “The End”.
But I’m not ready for it to be the end. I still have some fight left in me, feeble as it might be after 14 years of autoimmune disease hell.
I’ve been fighting for a long time now. It’s hard to remember “before”. Before I got sick, before my body started attacking itself, before, when I had big dreams for what I was going to do with my life.
To go backwards in my mind is kind of difficult. I never imagined I would end up here. Spending my days doing health research. Parsing out my energy so that I’d hopefully have enough to get me through the day and allow me to do my most important work – surviving, raising my kid. Letting the rest go, because I didn’t have it in me.
For the most part, my life was pretty good. I was “perfectly healthy”. I was active, happy, had friends, had a job, had hobbies and interests. I didn’t get sick very often. That month and a half of crud that I had where I dragged myself around with ear infections and throat infections… might have been mono (since I’ve spent some time wondering where the Epstein Barr Virus issues came from). But the doctor never tested me for that. That was the worst of the worst for most of my life up until about age 27.
The worst thing, and maybe it was the beginning of the end, was a case of poison oak. Three months of poison oak itchiness. Three months of cortisone shots and pills and baths. Three months of being miserable. But that went away. Eventually. If that was the worst thing in 27 years, that’s not so bad. I had nothing to complain about.
Even if it meant getting married with calamine lotion on under my wedding gown…
So… I got married, sold a house, moved across the country, bought a house, got a new job… all within a few months of that poison oak business. It was exhausting. I went to the doctor, and she suggested a flu shot. I said ok, that sounds like a good idea, I don’t want to get sick on top of everything else I’ve been through in the past couple of months.
It wasn’t a good idea.
I got the flu. And I felt dead inside. I would look in the mirror and into my eyes, and my eyes had no light. They were dead eyes. Just brown dull eyes, no sparkle, no life. What the? I was too young for this. I was only 27.
It got better… spring came and I was in a new state, with a new husband, and a new job… making new friends. We went on vacations, we hiked, we kayaked, we traveled for work, we traveled to visit friends and family. Husband trained for a marathon and I would bike or rollerblade with him to support him. Life was good.
But I didn’t feel “healthy” – I felt like there was something missing. Some vitality. Like a shoe was going to drop at some point. I messed around with diet. I read about the blood type diet. I tried it. I didn’t like it. I messed around with whole foods diet. It’s a lot of cooking, but back then I liked cooking. I took my vitamins. I walked 4 miles a day and drank my smoothies. I added wheat germ to everything. And yet.
We talked about starting a family. When a friend asked why we were waiting, I said I wanted to be as healthy as I could be first. She said, just get healthy after, you have your whole life to “get healthy”. I’m still wrapping my head around that… but she was right, what was I waiting for? How would I know I was healthier. The doctor said I was healthy as a horse. Perfect health. Go ahead, start a family!
So… we did. I didn’t enjoy being pregnant. It was uncomfortable from the very beginning. And then I became depressed and tired. Like, drag myself around the house tired. It was hard to get my work done. The doctor told me to drink more water, that I was fine, just pregnant. I drank more water and went back to her – she sent me back home after telling me to stop worrying. At 26 weeks, I started having contractions. Same deal, drink more water. At 31 weeks, my water broke, and at 32 weeks, I was sitting in the NICU crying over my tiny baby boy, the both of us with a raging yeast infection from a week of IV antibiotics.
He’s fine. He’s 15 now. He’s had his fair share of issues. I’m sure I’m to blame for most of them, now that I know what I know.
It’s been a long 15 years.
About a year after he was born, I went to the ER for possible appendix pain. My appendix was fine, and they couldn’t find out why I was in pain, but they gave me every test under the sun. Including a barium drink and some scans. They sent me home and told me not to breastfeed my son for a few days because now my milk was toxic from the tests. And oh, you are perfectly healthy, see ya.
Within months, I had Graves Disease. An autoimmune disease where your thyroid goes nuts. I’m pretty sure those tests in the ER were my tipping point and set everything else in motion.
I beat Graves Disease with diet, herbs, supplements, weekly appointments at Bastyr in Seattle, and some completely woo-woo energy work. That took almost 2 years.
I thought remission meant I was done – I went back to living my life. I must have relaxed too much because within a couple of years I was sick again. This time with Hashimotos – the other end of the autoimmune thyroid spectrum.
My bag of tricks from before didn’t work and I ended up on “thyroid meds for life”. Only that was not working so great either… and I was back to the diet and supplement and woo-woo relaxation stuff – trying to find the balance of living life but not expending too much energy that I didn’t have. I finally discovered that avoiding gluten was huge for me. That gave me a couple of good years where I thought I’d beaten it all – antibodies in remission again – life was mostly good with a few bad days (that lingering Epstein Barr Virus thing).
Back to the research, why was I so tired? Why was life so hard? Why could I no longer stand up to watch a whole kid’s soccer game? Why was I so sick when my antibodies were gone? Maybe it was candida again…. maybe it was adrenals… maybe it was time to change thyroid meds again… maybe diet needed revising… maybe there were some new tricks to add to my bag…
Ok, let’s try a candida cleanse. No sugar? No problem! Might as well go ketogenic while I’m at it. OH WOW, I feel amazing!!! This is the answer to everything!!! Skinny, happy, energetic!!! How did I never know about keto low carb until now?!!!
Doctor said Lupus.
Another confirmed it was adrenals – almost Addisons… two points away from Addisons.
It’s been a really long three years coming back from that.
I’m only 46. I’m too young for this crap. I am doing everything I can. I spend hundreds of dollars a month in supplements. I pay for an hour of high energy expenditure with days or rest and napping. I have tried everything except testing for Lyme and researching mercury poisoning from amalgams.
It’s time to do something big. It’s time to get these 14 silver mercury amalgams out, to get over my fear of dentists and denial that my teeth could be poisoning me. That’s the starting point today. The beginning of the end. That’s my hope.