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.

Sugar Love Hate_MG_8407_2257

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.

In the Collecting of Obscure Medical Procedures…

When I wrote my last post, I had no idea that I would find myself needing every one of those words the very next day.

But first, let’s back up a bit.

So for the last year and a half, I’ve worn duct plugs.

It’s a really fun phrase to say over and over out loud – try it.

Giggling now? Good.

Duct Plugs.

One of the most annoying symptoms of Dysautonomia is severely dry eyes – to the point that no drops can help it. On top of that, I’m limited as to what drops I can put in my eyes, so really – nothing helps.

Except for Duct Plugs.

They’re fantastic. They’re like tiny bathtub drain stoppers that are inserted into the tear duct on my lower eyelid to keep my tears from draining and, therefore, perfectly solving my dry eye issue.

I got my first pair of duct plugs the summer before last. About a year later, they fell out. My eyes had been burning and making me feel ridiculously sleepy, and it occurred to me to check my duct plugs (because you can see the tiny little things sticking out of your eyelid,) and alas – they were gone.

(Let’s take a minute for everyone to go find your tear ducts. Look in the mirror. They’re on the top side of your lower lid, on the nose-side of your eye. You have tiny holes just waiting to drain your precious tears away. They’re quite useful – unless you suffer from an eternal draught. Now. Think of the biggest pore plug/blackhead that you’ve ever squeezed out of your nose, except envision it made of rubber and shoved into those tiny ducts. That’s what my duct plugs looked like. Are we together now?)

I called to make an appointment with my Ophthalmologist (the receptionists all passed around my call so that everyone could hear me ask for new duct plugs), and when I went in for my appointment, he told me what I had previously not realized – duct plugs falling out was expected. In fact, my duct plugs lasted a lot longer than most. He said he’d put the next bigger size in, and hopefully they’d last a while. But it turned out, those were still too small, so he gave me the BIGGEST size of duct plugs available.

(I have big ducts. And I cannot lie.)

He explained that our next step, when these duct plugs left me, would be permanent duct cauterization – it was a great solution, but insurance didn’t allow it until you’d lost a pair of the biggest duct plugs.

So I happily left with my XL Duct Plugs, snugly keeping my tears in Eye Lake.

Which brings us to this week.

Again, I began feeling infinitely sleepy, eyes burning, lethargic, the whole deal. You just don’t realize the debilitating nature of something so simple as dry eyes until your eyeballs are withered raisins, and then wow do you ever.

I made my appointment for duct cauterization (so much nicer to request than duct plugs), made sure I wouldn’t need anyone to drive me home, and anticipated eyeball moistness once again.

I dumped my kids on my neighbor and headed in.

My Ophthalmologist came in and checked out my one remaining duct plug. I asked him to go ahead and pull it so I could get this cauterization thing over with in both eyes. He looked at me skeptically, but agreed to do so. He yanked it out, examined my eyes some more, then said,

“Do you think you can do this without a pain injection? Because the injection is really just as bad as the procedure itself.”

I thought of the all the things I’ve let my Physical Therapist do to me in the past six weeks. I’m tough. I can handle whatever my Ophthalmologist throws at me.

“Sure.”

I’ll be fine, I told myself. He wouldn’t offer to do it without the pain shot if it wasn’t a viable option.

The doctor left the room, then came back with paperwork that I had to sign, acknowledging the permanency of the procedure, and with a pen-sized blowtorch.

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While the door was still open, the nurse walked by and said, “I’ll be right out here if you need me…”

I raised an eyebrow. “That sounded ominous.”

The doctor laughed. I was not sure how to interpret his laugh, but I was pretty sure I didn’t like it.

He told me to lean my head back, and he stuck the tip of his cautery gun on my eye duct and turned on the zapper. I jumped slightly, as one does when a red-hot piece of metal touches their eyelid.

He pulled back. “Did you feel that?”

“Yes, but I can take it. It wasn’t horrible.”

“Hmm. I changed my mind. I want you to get the injection because I want to be able to really get in there and burn it good.”

He disappeared again and came back with an unholy-long eye shot.

He again told me to lean back, open my eyes as wide as I could, and look at the ceiling. He pulled back my eyelid and stuck that needle through the inside of my lower lid.

GUYS.

We have SO MANY NERVES in our eyelid. SO MANY.

The needle went into my eyelid and felt like it was coming out of my right nostril. He jammed that thing all up in my face. I felt the cool liquid of the numbing medication trickle into my sinus cavities from above, and it made me desperately need to sneeze.

But alas. There was three feet of needle in my eye. This seemed like a bad time.

“Keep your eye open!”

(I would have answered “I can’t!” but I couldn’t move without moving the needle in my eye.)

“Are you okay?”

(I would have answered “Are you kidding?” but I couldn’t move without moving the needle in my eye.)

He finally pulled it out, then walked around to the other eye.

WHOSE bright idea was it to get both eyes cauterized on the same day? I should have kept that precious duct plug as long as it agreed to stay in.

It was unbelievable. The pain from the injection was definitely that red crying face from the pain chart, and worse if such a thing exists (a crying poo emoji? Yes. A red crying poo emoji.)

Pain Assessment Tool Poo Emoji

(And as a reminder, this is coming from the person that has happily let her Physical Therapist stick her dozens of times in the past six weeks in the neck, shoulders, leg, and head.)

But I somehow survived.

He told me he’d be back for me when I was numb, and happily walked of the room, leaving me to tend to my gaping eye wounds.

I dabbed. I thought about crying but figured it’d hurt too much. I dabbed some more and realized I couldn’t feel my dabbing anymore. At least that seemed like a step in the right direction.

He came back and had me insert my head into the head brace so he could “get a really good angle.”

He got out his burny tool and inserted it deep into my left eye duct. Pressed the button, heard the electrical burning sound, then the frying/boiling of flesh, then a poof of smoke shot up directly in front of my eye. I guess that was his cue that cauterization had occurred, because he retracted his eye branding gun and stuck it down into my right eye duct.

Button, burn, boil/fry, poof of smoke, retract.

Seeing the poofs of smoke caused by the frying of my live eyelid skin made me thankful for those Son-of-a-Motherless-Goat Shots from Hell.

Each eye took maybe three seconds.

But after he finished, THEN he found it to be the right time to say,

“Oh by the way. Just so you know, the cauterizations will probably open back up at some point. But the good news is, we can do this as many times as we need to!!”

I looked at him incredulously. He did not look like he was being ironic.

The paperwork. Our conversations. Everything had indicated that this was it. The Holy Grail of duct closure. A vasectomy of the tear drain. AND NOW HE’S GONNA TELL ME I GOTTA DO THIS AGAIN AND AGAIN AND POSSIBLY AGAIN.

No.

I said in my most biting tone, as I tried to hold my recently char-grilled eyes open, “You know what, let’s go ahead and schedule ourselves a monthly date.”

As I got in my car to drive away, the numbing shot quite immediately wore off, and I began to feel the third-degree burns in my former eye pits. I fought to keep my eyes open, thinking angry thoughts about the receptionist who told me I wouldn’t have need for a ride home.

But I made it.

And for now, at least, my ducts are closed for business.

Appendix: if you want to see the procedure, I found a very accurate and short video here. Except that my doctor definitely did believe in inserting the cauterizing gun into the puncta. And also if you see me this weekend and I appear to have a black eye, please compliment me on my stellar eye shadow job.