(This is a post I wrote over a year ago, in April of 2013. The information is still relevant)
Hello my dear Reader!
I’m sorry for the silence. I went back to Mayo Clinic… and there have been some changes. There were a lot of funny moments, most of which led up to the discovery that I have hyperadrenergic POTS
Which could be a good thing, because I looked in the mirror the other day and noticed a vague resemblance to a Teddy Graham.
Well isn’t that just disgustingly adorable.
I could just eat you up.
But I can’t. Because there is gluten inside of you.
I actually had something really hilarious happen when getting my MRI. They gave me something horrible to drink with lots of glucose in it, and just as they tell me to hold my breath and hold still to take the picture I got the hiccups!!
Lets just say it wasn’t the most opportune timing.
This was about a month ago now, but I’ve been quiet since it’s been a lot to handle. A bunch of my medicines got changed. Well, actually all but two. Plus I’m now supposed to exercise 40 minutes of cardio using my legs and then work on my core and upper body. I could manage that. What drove me nuts was the fact that my pillow had to be up 6 inches and I had to go gluten free for a month.
Yeah. “The Scream” by Edvard Much has nothing on my horror. Just to clarify, I like to bake. A great deal. I enjoy making dinners, but confectionary delights are my joy. And wheat is a crucial part of that airy, crumbly, delicious process.
Oh, I tried. Don’t get me wrong. I tried. I bought all the right gluten free flours from Bob’s Red Mill. I ate spaghetti squash when the cravings got bad. I even tried to bake. A few of Pie’s descriptions for my baked goods were:
“This tastes like Hobbit feet”
“What are you feeding me?! A 100 year old potato that’s still in the ground??”
Needless to say, she was not impressed. You have to be on a pretty intense learning curve and the mistakes are… inedible. For those of you who have sadistic doctors, this is a list of websites my gluten free friends gave me.
My favorite bread mix was by Pamela. It’s a brand thats pretty common, you should be able to find it at Trader Joes, Sprouts, or some other natural food store. Don’t do Bob’s Red Mill mix. That’s what prompted the 100 year old potato remark. Also, buy rice or almond crackers. I had no idea how frequently I reached for crackers until my entire pantry was off limits. The only flour I ended up liking was ground almond flour. It’s sweet and nutty without being overwhelming. Also, it manages to cut some of the acidic taste in the other flours. Stay away from pure coconut flour unless combined with something else. It makes the mixture SUPER chalky and grainy. Granted, I may have just been using it wrong. Anyways, if you have to go on this for any reason, good luck and God bless you. This was my own personal 9th level of hell. I was cranky and lethargic ALL MONTH LONG. So, whoever says that going gluten free makes you energetic and lose weight is someone I hope I never meet. They made me angry.
Granted, the whole having to sleep with my head up super high might have contributed to the sleepiness. Nah. I’ll just blame the lack of gluten.
I think the whole thing would have been easier if I hadn’t just started eating things I liked again. Milk, chocolate, fiber, anything besides rice had been gone for a few months. I don’t know. Sometimes it just seems in POTS that as soon as something heals up it has to go berserk again. Pie once described POTS as “A day on repeat that got lost in translation” and it’s pretty true. It’s hard wanting to know the meaning about why you don’t feel well that day. It’s also hard knowing that just because you’re tired today doesn’t mean you’ll feel better tomorrow. Even if you sleep well, take all of your meds, and don’t pull the cats tail. There’s no such thing as karma in a POTS life.
So who else is diagnosed with not only POTS, but a super-special rare kind of POTS? If so, tell me about it! Honestly, my version explains some things, like the anxiety that happens when my adrenaline just leaks all over the place for no good reason. I’d love to hear from other exotically diagnosed individuals, but until then,