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.

The Summer Ticket.

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Summer began this year before I completely realized what was happening. Usually the first day of summer is a day of huge fanfare and excitement (me celebrating raucously because I don’t have to teach my children anything of great import for a couple months), but this year it was sandwiched between mine and Chris’ anniversary trip, our last field trip, and the kids going to day camp for a week. So it took me a few weeks before I was able to slow down, breathe in, and recognize the glories of summer.

The kids, in the meantime, asked “When are we going to have our first of summer clock tower meeting?”

It’s amazing how quickly they can turn a one-time thing into a guilt-wracking tradition.

I didn’t have any great ideas or incentives for this summer – despite my attempting to employ my brain on the topic. Chris had suggested a few summer guidelines, but nothing worthy of a grand clock tower meeting.

Finally, it was at lunch with Not-Crazy-Renee where I was given THE brilliant idea of summer. I was bemoaning how many questions my kids ask every day (the recurring torture of my life) and how many of them are TOTALLY UNNECESSARY.

She suggested the most fantastic idea ever concocted.

“Why don’t you give them tickets for the number of questions they can ask a day?”

TICKETS.

MY KIDS LOVE TICKETS.

It was so staggering that I reached for my phone that very second to order tickets on two-day Prime shipping. But then caught myself because we were at Olexa’s and people do NOT order tickets while eating quiche at Olexa’s.

(I learned via self-imposed torture about what people do and do not do in the palace that is Olexa’s on my last visit. Four and a half years ago.)

But I remembered to order my tickets that night. When they came in, I quickly hid them from my kids because the mind-blowing sight of rolls of tickets would create SUCH A BARRAGE of questions that I might have to hop a flight to Brazil just to survive. (At least Brazilian kid’s questions are in Portuguese.)

Sunday night, we went to The Clock Tower – right at sunset for optimal meeting magic.

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We sat down and went through all the boring stuff first. Summer bedtimes, amount of shows/iPad that could be enjoyed per day, what must be completed before shows/iPad were watched…

Then Chris unzipped the high-security bag and pulled out the most glorious roll of tickets our kids had ever seen up close and in person.

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They were both immediately bewitched. Ali was probably in the middle of asking a question about the tickets when I snapped this picture.

We carefully explained to them that all questions aren’t bad. But most of the questions they asked were completely unnecessary, and many of the questions they asked they already knew the answer.

They would get 15 tickets per day. They would have to give me a ticket every time they asked me one of these unnecessary questions which included but was not limited to questions starting with…

“When can we?”
”How many days until?”
”Can I have?”
”Will you buy me?”
”When will we?”

When they saved up 20 tickets, if such a miracle could be accomplished, they could trade them in for a prize.

They both loved this plan. Plus, tickets. Tickets are marvelous. Tickets make all of life more fun.

The ticketing plan began on Monday morning. Chris sat the tickets up on an easel in the kitchen and it was the children’s responsibility to get their own tickets each morning.

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Ali was a quick and determined learner. Halfway through Monday she said, in awe, “I’m realizing HOW MANY questions I ask you that I already know the answer to! I’ve caught myself so many times.” She managed to slide through Monday and Tuesday while only giving me two tickets per day.

Noah soon realized how challenging this game would be for him, and began planning ahead for his next infractions.

<Silly question>
”Bring me a ticket!”
”I’ll go ahead and bring you two – one for next time.”

<Silly question, silly question>
”Bring me two tickets!”
”I’ll go ahead and bring you four.”

Noah was out of tickets at 2:20pm on the first day. At which point I realized that I hadn’t exactly figured out what to do when that occurred. Did subsequent questions count against tomorrow’s tickets? Do I not speak to said child for the rest of the day? Perhaps Duct Tape could be in order…?

I kept count of his overage for the day – he got to negative 11 tickets by bedtime. Chris the Merciful Summer Consultant declared that “Ticket Mercies should be new every morning – he gets 15 tomorrow morning.”

And so he did.

When I woke up Tuesday morning, I rolled over to see two tickets lying next to me in the bed. I squinted, confused for a moment. Ah yes, I vaguely remembered Noah coming into my room before I was awake to ask me questions.

But despite the early start, he made his 15 tickets last until 4:40pm on the second day, and I noticed a significant amount of silence and a lovely peace about him. He was clearly trying his best to not let all of those questions come tumbling out of his mouth.

By Wednesday, Noah ended the day having performed a miracle true enough to warrant sainthood in the Catholic Church. He had five tickets left over.

My summer is going to be amazing.

Stepping Into The Light.

Trigger Warning: Dear Mom, don’t read this post.

(I made the mistake of telling my Mom the some of the details of this adventure on Sunday. She asked me to please never ever tell her if I did this or anything like it again.)

Stephens Gap Callahan Cave Preserve (no relation to any Callahans or Stephens I know) has been on my mental bucket list for a few years, from the moment I first saw a photo of it. It is one of those surreal natural wonders that I a) couldn’t believe existed and b) certainly couldn’t believe existed only two hours from my front door. But it requires a permit, you must travel with at least one other person, and there was no way I could take my kids, so a full day where I could take on such an adventure requires a bit of planning to pull off. I tried last year while the kids were in camp, but Noah got strep. But this would be my year.

Oh and also – the whole thing is super dangerous. This is the “real” kind of cave – unlike the thoroughly safe DeSoto Caverns I visited earlier this year, this one is not lit or guard-railed to make it safe, does not have staff to show you what to do, and you have to sign all the waivers acknowledging that you may or may not survive. I very specifically did not Google how many people had died there until after the trip (the answer is three – that I found articles on, anyway.)

I recruited three people to join me – a photographer who interned with me last school year, Jake Marvin, his mom Kim, and his sister Anna. Kim came prepared. A backpack full of water and a bottle of liquid Benadryl – basically what every cave expedition needs (I mean, helmets and a flashlight would’ve been real nice, but Benadryl was just as well.) It was a mile hike to the cave, along which I got a text from my dear husband.

“I’ll always remember you.”

The cave is set up as such: there’s the “pit”, which is a 143 foot drop straight down with a waterfall running through it. The pit faces upward in such a direction that it catches light beams in a most magical way. To the left of the pit there’s a climb-down entrance. We arrived at the climb-down entrance first, and it was so steep looking that I said, “Okay – here’s the pit.”

…until we found the actual pit. At which point I realized that other hole had indeed been where we would have to climb down. This is the pit:

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After Jake and Anna completely freaked their mother out by getting way to close to the pit, we headed back to the climb-down entrance.

We began our descent, which wasn’t as steep once we got started. It was, however, quite slippery. There were streams and waterfalls in several places along the entryway, making rocks slippery and unstable. Just as I said “look at all these jagged rocks just waiting to break a tailbone!!”, I managed to slip and fall onto my tailbone. Thankfully I have enough cushioning back there to break the fall with no damage.

As we got lower into the cave, the dancing sunbeams took our collective breath away. As we rounded the corner where we could truly see the scene, we were all in awe.

This is what we saw.

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The sunbeams were alive, getting brighter and dimmer and sometimes completely disappearing, leaving the cave instantaneously dark. Sometimes they would fade just enough to allow the waterfall behind them to be seen.

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As water and waterfalls were coming from multiple directions (you can see another waterfall in the right of the above picture), it was impossible to keep our camera lenses dry, hence the droplets on many of the shots.

Since Kim was The Mom of our trip, I sent her to investigate the pedestal – the large round rock upon which the light beams were shining. It was perched on the edge of the pit, about 50 feet up from the bottom. Everything was wet and slippery, and we’d pre-agreed that no one would be going onto the pedestal unless we felt it was safe, even though that was the shot we had come for.

Kim and Anna inched their way around the top edge first, looking for a step down. There wasn’t a viable choice.

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Jake and I were busy setting up our cameras and getting our angles just right when they finally reported (or yelled, as all of the waterfalls made it extremely loud): the only way to the pedestal was from below. Which meant walking through a stream/waterfall, then climbing up the rocks leading to the pedestal.

Anna tried it first. I give Kim full credit for her allowing of this endeavor. But she made it look easy – somehow. And Anna was the first we got in The Shot.

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Starting in the bottom left-hand corner of this picture, you can see the rushing water that she had to navigate down. That rushing water goes straight into the pit, so slipping is not advised.  She stayed up there for a few shots, then climbed down and back up to us.

Kim went next – she wore her Wonder Woman shirt for the occasion.

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She couldn’t hear our photographical instructions over the roar of the waterfall, which led to this gem of a picture.

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As Kim made her way back up, I got a bad video of her navigating the water:

It was my turn. I would hate myself forever if I didn’t try this, no matter how frightening it looked from my angle. I set my camera up on the tripod and left it in Jake’s trusty hands. I brought a dress tied to my backpack – I untied it and draped it like a scarf around my neck. And I slowly began my descent through the waterfall. I shimmied from side to side, trying to find the driest rocks and the safest hand-holds possible, but still fully immersing my feet in the rushing water several times. There were thankfully some really polite rocks that offered perfectly contoured handles on the way down. But still, I admit it: I was a bit terrified.

I made it to the bottom of the pedestal and began climbing up. The rocks were of a size that made it fairly easy at first, aside from the fact that they were all covered in mud that was most likely comprised of 24 different types of bat guano. When I got to the final rock of the pedestal, I realized that there was no way up without a full marriage between my legs, hands, and butt and the fairly thick pile of guano mud. So I went for it. I received a full-body mud treatment, but I made it to the top.

I unfurled my dress and threw it over my workout clothes that were now covered in a wet layer of slop. My long dress dusted through the mud. I took out my ponytail and shook my hair loose. I heard cheering from the other side of the ravine – I’m sure it was for my super-glamorous model preparation.

And then I posed. And Jake got The Shot for which I had waited so long.

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As I looked up to the sky, it was every bit as surreal as one would imagine. The sun twinkling above me, waterfalls dripping and rushing from multiple directions, and rainbows dancing in the beams and mist – all only viewable from my current location. I wanted so badly to have my camera there with me – but the wet and muddy journey combined with the extreme moisture of the air around me prevented that option entirely. However, experiencing the moment – staring into that rainbowey, waterfalley, sunburstey canvas – it was about as close to heaven as one can experience on this earth.

This absolutely should be one of the most notable wonders of our country.

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Getting down was actually more terrifying that getting up – the foothold I’d used to get onto the rock was not accessible from a front-facing position, and I was not willing to slide down on my stomach. After sitting there for a few minutes not knowing if I’d ever leave the pedestal, I gave myself a pep talk.

C’mon Rachel. You’ve been doing planks and push-ups all year. You’ve even been lifting weights, albeit the lightest ones. You need to put some belief in your arms and lower yourself down. It’s the only way.

I planted both my palms solidly through the mud and onto the platform, then slowly lowered my body down to the next rock I could find footing. For a tenth of a second I thought I would surely slip and slide off into the pit, but I didn’t. My level of adrenaline was off the charts.

I had done something. Something that felt entirely unsafe, at least in my narrow construct of life.

Jake went last. I felt bad because by the time his turn came, my camera was hopelessly moist (something that was giving me no small amount of anxiety, considering I’ve already lost one camera to moisture), and all of my pictures of him had a slight smudged quality.

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Once even my camera decided to turn him into a ghost…which, honestly, is a pretty awesome mistake.

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The sunbeams “went out” once when he was up there – you can see what it looks like here with just the waterfall:

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But the beams returned, we got a few more photos, and then he began his descent back down.

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When we finally all climbed our way back out of the cave, I immediately texted Chris and proclaimed our survival. He was overjoyed that he would have more than just a memory of his wife.

As we walked back on the trail, the full extent of my personal moisture began to take hold. I very much realized what it must feel like to be a toddler walking around with a dirty diaper. Had I thought to bring a change of clothes? Of course not. And so, I drove two hours back, waited around an hour, picked up my kids from camp, and headed home – and a full five hours after emerging from the cave, still a good bit damp, I finally was able to begin the process of de-guano-ing myself.

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I’m positive that the long-lasting effects on my skin will be amazing. And I can’t wait to do it all over again (but don’t tell my mom.)