Origin Stories.

Every year about this time, I write a post similar to this one. Then I don’t publish it, out of concern that my words would be misread or misunderstood. This year I decided to go ahead and hit that publish button.

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For the past ten years, the constants of my life have been that I am a writer, a mom, a wife, an accountant, a homeschooler. But four years ago, that shifted dramatically. Very suddenly I found myself sure I was going to die, dealing with daily chest pains and blacking out and heart racing. Four months of every medical test imaginable and I was diagnosed with Dysautonomia. Since that point my life has consisted of working every day at being able to minimize my symptoms. Drinking obscene amounts of water, running nearly every day, abstaining partially or wholly from the delicious parts of life like caffeine and chocolate and sugar, IV treatments, and tracking everything imaginable to see what helps or hurts my situation.

For clarification, I actually do live a fairly normal life, but I work seriously hard at being able to do so.

There are some things I can’t fix, however. I have tried countless things to make my brain work as quickly and as wittily as it used to, and nothing seems to help. Writing takes infinitely longer, and I have shrunk my writing schedule down from 7, 6, 5, 4, 3, times a week to the current 2 and sometimes only 1 time a week. If I happen to go back and read something that I wrote more than four years ago, I end up in a funk for a couple of days because it makes me so mad at how well my mind formerly functioned. And then it frightens me that my brain is in a continuing state of decline, and it’s going to get even worse.

Every year about this time, when my Dysautonomia gets especially rough (thanks, summer) and my brain gets unendingly fuzzy, I struggle with whether I should continue writing, or if I should take that pressure off of myself and quit while I’m ahead. Other times I glance at my blog’s dwindling visitor numbers and ponder whether I’m like a sitcom that’s gone three seasons too long.

But then I remember that the real reason I’m writing is for my children to read. They have 2,100+ posts over nearly ten years, many documenting their lives, and they already enjoy reading and hearing the stories I’ve captured here. Although Ali has reached the age where I don’t write about her as much because she deserves her privacy, Noah still has a lot of childhood left to document. And so I convince myself to keep writing – to not care if I’m boring people or losing readers with my diminished ability to craft words in a captivating manner. I write for the reason I started writing – to record our own personal history book.

(It really is hard to remember that because I love you all so much, and the hundreds of relationships I’ve birthed out of writing are precious to me. But at the end of the day, I try (but often fail) not to stress about my writing.)

So if I don’t write as often as I used to, or if you also notice that my writing style has drastically shifted, or if I take a long quiet break, please know that I’m probably somewhere, racking my brain for words and original thought, frustrated that I can’t remember how to think creatively.

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But as hard as the writing loss has been, from the journey of dysautonomia came my love for photography. Because when my brain was too foggy to form words, I could still tell stories in picture. And since I was now forced to exercise to stay lucid, I was seeing (and appreciating) more of my surrounding world on the daily.

From that birthed Picture Birmingham, my photography business where I sell my prints, note cards, and other photo art products so that I can donate all the profits to The WellHouse, a ministry that helps rescue and care for victims of human trafficking. In the three years of Picture Birmingham’s existence, it has raised over $15,000 for The WellHouse – and zero dollars of that would have existed if I hadn’t gotten dysautonomia.

So although my daily life is affected in annoying and constant ways, and although my ability to craft words and love for writing has been decimated, and although I have to work every day to live normally, dysautonomia has forced me to LIVE to be able to live – and therefore, to help my children also live a life full of seeing our beautiful world. It has forced me to appreciate my state, to explore, to engage in nature, and to do crazy things like go in a wet cave and climb on a slippery pedestal above a 50 foot drop.

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It has changed who I am and what I value. It has given me an appreciation for this spectacular world and an ability to go explore it. It has given me the opportunity to use those explorations to help women that are suffering in ways that I cannot imagine.

So yes, I have an incurable illness. And yes, that’s really stupid and annoying. But as illnesses go, this one does have its blessings. And I am, (at least some of the time,) okay with that.

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What You Hear While Getting Needled.

I don’t talk about Dysautonomia at length here very often, because frankly, I find it annoying. Same for running – I run nearly every day, but I just don’t find running a very interesting subject to talk about. I like running a huge deal. It makes me feel better. I put one foot in front of the other thousands of times in a row. What more is there to say?

(A LOT, according to all the running groups I’m in. I should really work on being more interesting.)

Dysautonomia is also something that is a part of every single day for me. This June will mark four years since I very suddenly began experiencing this very stupid disease, and I’ve come to look at it as something that I have to just work on, every single day. I can’t just leave it as is, or it will get worse. I can’t just keep doing what I’ve been doing to help it, because things quit working. I have to constantly tweak, analyze, research, try new things, and WORK at feeling decent enough to function.

A few things I’ve found in the past year that help are:

1. Tailwind (less weird than it sounds)
2. Cutting out sugar
3. Very controlled moderation of caffeine (one dose in the morning, one in the afternoon, not allowing them to be too close together)
4. IVs of saline and vitamins.

Yes, Dysautonomia is so fantastically annoying that I’m willing to voluntarily get large, straw-like needles jabbed into me twice a month. And I’d do it every day if I could.

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I’ve known for a long time that IV fluids can significantly aid Dysautonomia sufferers, but I wasn’t into paying a $150 ER co-pay to try it out for myself. And you can’t just walk into CVS and ask them to hook you up. However, we have recently acquired a clinic in Birmingham that provides much-less-expensive-than-the-ER private pay IV treatments with a full menu of groovy vitamin choices to add to your IV bag.

This is amazing.

I went once, then immediately signed up for their 12 month package to achieve discounted rates and two treatments a month.

The IV makes me immediately feel like Wonder Woman after a long weekend and lots of sleep (I usually try to go run immediately afterwards because I have the BEST runs of my life that are almost worth writing about.) The saline ecstasy lasts for a few days.

But the real ecstasy comes from what you might get to overhear at the clinic.

The rooms are are outfitted with giant, cushy, recliners and have the privacy of a curtain over the doorway. So if someone else happens in around the same time, you might get the privilege of hearing their life story.

Usually they’re boring, like mine. “I have dysautonomia. I was feeling very blacky-outy.” And the occasional man bringing in his great-great-great-granddad. “He was sick, and now he’s really weak.”

But the other day, we all finally got something to talk about.

I was halfway through my treatment when someone else came in. He sounded brusque, businesslike, and commanding. He spelled his first and last name at least three times while they were trying to pull up his account. He had no patience for how long it took to type his name.

As he was walking past my curtain, I heard him begin, voluntarily and quite casually, to explain why he was there.

“I do a LOT of drugs. I travel for work, and you gotta do what you gotta do, you know? When I’m at the clinic in Atlanta, they’ll give me three IV bags at once. Is that something you can do?”

“Uh…no…the most we’ve ever done for one person is two bags at a time.”

Two bags at a time? I did not know this was a possibility. Isn’t one enough? Apparently not if you’ve done a LOT of drugs.

They put him in the room across the hall from me – I can only assume for my entertainment. He proceeded to explain that he’d traveled a lot this week, then partied for three days straight. And also…he couldn’t pee.

“If I came back tomorrow, could I get two more bags of fluid?”

Holy cow this guy wants four bags of fluids in two days. AND HE CANNOT PEE. And to think I was feeling bad getting two bags a month.

Nurse sounded skeptical again. “Well…I mean…I guess you could…but you really need to give the vitamins and minerals a chance to work their way through your body. If you still can’t urinate after these two bags of fluid…maybe come back tomorrow.”

Wait a minute.

No.

If you still can’t pee after getting 2000ml of saline and vitamins pumped into your body, I think you might need to go to an actual hospital. The body can only hold so much fluid, right?? I mean. RIGHT??

But he seemed unconcerned. This whole organ-failure-by-three-day-party seemed like something he was accustomed to experiencing. He casually explained that he was pretty sure four bags of IV fluids would definitely jump start his bodily functions again.

The nurse came back in my room to unhook me. My single little IV bag was done, and so I mourned the ending of my audio entertainment.

I whispered to the nurse. “Sounds like I’m the boring patient today.”

She giggled. “I know, right??” She told me that she hoped I felt better. I told her I was thankful for guys that do a lot of drugs. Because there aren’t enough Dysautonomia sufferers in Birmingham to justify the existence of this clinic, so they’re totally subsidizing the demand for my legitimate medical needs. And keeping me entertained while I receive it.

Pour Some Sugar on Me! No Wait – Don’t.

As mentioned previously, I’m doing monthly goals and challenges this year. On my list of potential experiments, I’ve had two in particular that I simultaneously dreaded and really wanted to try.

Giving up sugar, and giving up gluten.

It took 90 days to work up the courage to try one or the other, and I chose sugar, even though I usually think very snobbish thoughts about people who would be so moronic as to give up The Ultimate Fruit of Life. Daily chocolate is often what keeps me from losing my Ever Lovin’ Mommy Mind, and I have at least a little bit of it on a daily basis.

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I wanted to experiment with this both for weight and health – Dysautonomia is a very annoying disease that loves to make you give up everything you love (carbonation, caffeine, chocolate) and force you to take on all sorts of unsavory behaviors* (running, drinking insane amounts of water, lots of sleep) to keep it in line. So OF COURSE, a low-or-no sugar diet is highly recommended.

*The only benefit Dysautonomia offers is the edict of a very high sodium intake – it helps keep you from blacking out as much.

Additionally, I’ve been trying to lose weight this year (using Lose It! again) and stalled out in January after losing an impressive four whole pounds, despite counting calories and exercising every day. So what could it hurt to see what a month without sugar would do.

WHAT COULD IT HURT? EVERYTHING.

That was week one. I hated myself. I hated everyone. I hated life. I wanted sugar. I needed sugar. And I couldn’t eat literally anything because literally everything contains added sugar.

Ketchup.
Crackers.
Chocolate.
Pasta.
Cadbury Mini Eggs.
Salad Dressing.
Candied Pecans.
Chick Fil A Chicken Strips.
Cream Cheese Icing.

It was enraging.

The first week consisted of me picking up something to eat, reading the label, then yelling and throwing it down. In order to not feel like a failure, I allowed myself half a box on my tracking sheet for “no sweets” and a whole box for “zero sugar.” I got a few half boxes that first week as I learned to snack on nothing but peanut butter and eat nothing but nothing.

It didn’t help that the children kept offering me parts of their food and snacks as they always do, only for me to have to answer every time, “I’m not eating sugar, remember?”

“Oh yeah…why.”

Chris can testify to my anger issues that week – they were intense. He encouraged me to maybe just cut back on sugar – surely zero grams was an impossible goal. (I think he just wanted his state of familial happiness back.)

The vortex of that hellish time in my life happened on the first Saturday morning of April. I was prepping Noah’s breakfast that I daily make lovingly by hand (frozen Eggo pancakes) and took my usual Mommy tax of two pieces of the most buttered bits of pancake, as I do every morning.

As I put the bite in my mouth, it occurred to me.

Holy crap.

These pancakes probably have…sugar.

I pulled out the box and indeed. They had the worst offender. High Fructose Corn Syrup.

I looked skyward and yelled out “I CAN’T EVEN HAVE MOMMY TAX!??!?!?!?!”

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I was tormented. Angry. Feeling as if this assignment was ridiculous and idiotic and a fool’s errand and here I was finding out at the end of the week that I’d accidentally been poisoning my body with the exact thing I’d been fighting and hadn’t even APPRECIATED that I was eating The Nectar of Life.

But the cliché is true. Sometimes you have to hit rock bottom to start to make your way back up.

Slowly, I began to crawl myself out of my angry, unsweetened hole.

I developed routines of things I could eat – and enjoy – that did not have added sugar. My tastes began to change, and things that used to not taste sweet at all now tasted delectable.

And I began to feel better, lose inches, and finally even lose a couple pounds.

I had told myself at the beginning of the month that I’d have blackout dates during this process – Easter weekend (who can pack two kid’s Easter baskets and have zero grams of sugar? That’s unnecessary cruelty) and our beach trip. But when Easter weekend arrived, I experienced the oddest feeling of great trepidation at the thought of allowing sugar re-entry.

We were invited to an Easter party Saturday morning, where there were my favorite type of dessert – Oreo truffles. With white chocolate on the outside, even. For the first hour, I just thought about the fact that I WOULD have one before I left. I finally picked one up and stared at it. I literally felt scared. What would my body do with this foreign object? Did I really want to open this door back up? Would all my feelings come flooding back at me?

Finally, I bit.

The sugar flowed over my tongue like a drop of water in the desert. It nearly tingled. I savored the moment, only daring to have one. It was delicious, it gave me a total headache and made me feel dizzy, but it did not send me into a sugaraholic bender. I could do this.

That night, as Chris and I packed Easter baskets, I allowed myself just a couple pieces of candy. I couldn’t believe I was more afraid of overdoing it than I was eager to allow myself to binge during a pre-planned blackout date. But here I was. I, Rachel Callahan, artisan chocolate connoisseur and rewarder-of-self-with-sugary-treats, was SCARED OF SUGAR.

As the weeks went on, I became less and less interested in sugar. I didn’t lust after it, think about it, or even want it.

And I noticed something else, too: I didn’t particularly care about any food.

I ate when I needed to eat, I didn’t eat as much, and I didn’t spend time thinking about food and obsessing over my next meal.

Once, I was even irritated when Chris wanted to go out to lunch – why waste all that time on something as inconsequential as food? I could just eat a little cheese here…

And so, it seems, at least for me, that sugar was THE addicting quality of food. It was the thing I craved, the thing that drove me back to eating more, and the thing that kept me from losing weight. And, for what it’s worth, one of the things that made me feel bad. The lack of sugar has certainly not cured my daily battle with Dysautonomia, but I have had more good days this month.

FullSizeRender 74It’s that last column there…the yellow-out dates are Easter and the Beach. Even though they were pre-planned days, I couldn’t bring myself to eat ACTUAL sweets while we were at the beach. I am abhorrent.

I haven’t decided what is to be the permanent status of my relationship with sugar. It’s complicated. I cannot possibly imagine parting ways forever, but I do want to have some space from it for longer than a month, so I have semi-committed to continuing our trial separation for 90 days. I still get half boxes some days, and that’s okay. It’s not like I’m truly living the Zero Gram Life – I’m pretty sure that is unattainable unless you never go out to eat and never eat anything that wasn’t made from scratch. But the sheer amount of sugar I’ve not eaten in April – especially from the kid’s Easter baskets which are mysteriously way more full than they would usually be at this point – is pretty substantial.

And I don’t hate it. Not anymore.

Even when, just this morning, Noah offered me a Fruit Loop.

“I don’t eat sugar right now, remember?”

“Oh yeah…” (he put the Fruit Loop back and picked up another color) “But surely you can have this one.”

“Nope.”

“You’re not even eating green sugar???”

I know, son. It makes no sense.