Dysautonomia International 2018: Why I Suck at Travel (Part 1)

Me, my wayward bra straps and all my bruises are coming for Nashville.

 

Last week I travelled to Nashville to attend to the 2018 Dysautonomia International Conference. I was there to speak at the conference, do a book signing, network, see all my friends and fellow POTS patients….

And blindfold, kidnap, and haul away a top autonomic dysfunction doctor to help me come up with some kind of treatment plan.

Because at this point, folks, I was hanging on by a thread. This thread was comprised entirely of Gatorade, pain medication, payment alerts about my rent, car insurance and CareCredit account and SHEER WILL POWER.

I was a hot mess.

Welcome to the Chaos

The day before I left for Nashville I was concerned. Was it about the two speeches I had to give? No. Was it about my first ever book signing and whether or not anyone would even pass by my table? Nope. Was it about whether or not I looked fat in the one professional outfit I had carefully selected and then recently seen a picture of myself of in a photoshoot and was like DAMNIT, could you not afford photoshops on those two sandbags I used to call biceps? No (I mean, obviously, yes, but at the top of my list it was a no.)

I was concerned about the fact that of the SEVEN midlines I’d had in the last two months, only one of them had lasted over seven days and the one in my arm at this, the eleventh hour, felt like a flimsy piece of medical-grade spaghetti.

So with immeasurable dread, I marched myself into my infusion center Tuesday morning thinking to myself: maybe it won’t be so bad! Maybe they’ll say it’s a lot stronger than it feels! Maybe they’ll just change out some pieces and not have to start a new one…..

Gina, one of the extremely competent and compassionate PICC line nurses at my center was the decision maker. She played with the line a bit and told me there was no way it would last through my trip to Nashville and would have to be replaced later that afternoon…I pretty much wanted to die in a puddle of my own tears.

We pow-wowed with some of the other nurses to discuss what would give me the best shot and at 4PM that afternoon I came back and she threaded a traditional midline into the same arm. (My other arm is recovering from a blood clot and can’t be accessed for a few more weeks.)

She used lidocaine. The line flushed. It looked and felt stable.

It also looked like this:

Just a little bruised, surrounded by open past incision sites that wouldn’t heal, but otherwise decent!

And once the lidocaine wore off, the healthy continued doses of painkillers kept the anxiety about the fact that my arm continued to swell and SWELL throughout the night at bay. I slept. I iced. I heated.

I woke up the next morning and I got my ass on a plane to Nashville.

This year I was joined by my mom and my Nana and we met up with my sister who was flying in from Seattle. While I knew I wouldn’t be able to do too much gallivanting around town, I hoped I would have some spare time and energy to spend time with family in between keeping my symptoms in check and working.

MEET THE CREW

My Nana

 

My Mom

My Sister

The flight was a breeze and before I knew it we were touching down in Nashville. We got ourselves to baggage claim, into the shuttle, and off to the hotel.

It wasn’t really up until we checked into our rooms, I put down my bags, took off my jacket, looked down at my arm and realized: well fuck.

I don’t know if it was just the rush of traveling (or pain killers, probably the pain killers) but the minute I really caught my breath I suddenly felt like someone had been slamming my arm with a meat hammer for the last several hours.

Between the pain, fatigue and dehydration I was definitely on the verge of passing out and almost totally unable to communicate with my mom. I flipped open my suitcase and started pulling out my medical supplies, making completely non-English language request for her to help me set up my IV Pole.

I got my bag hooked up to my tubing, and then hooked my tubing up to my midline, and then turned around, thinking my bag was ready to go onto my IV pole….but it was not ready for me. My mom was struggling to unlock it. This was a new pole–one my new infusion company had boxed and I’d kept that way for easy packing. She and I tried our best to “unlock it” and expand it–but the stupid thing wouldn’t budge.

And in the meantime, I was so out of it I just let my bag hang on it and the next thing I know I’ve got black blood pouring out of my midline and up the tubing.

So I’m frantically pulling at the pole, my mom, who is not supposed to be lifting anything (as she is also recovering from surgery) is holding the pole over her head and I’m telling her to just put it down! and she’s asking what do I want her to do? I’m so far gone at this point I just sit down on the floor, with the bag on the short, broken pole (which, at this point, we’ve completely ripped and there’s a knob on the floor somewhere.) And I’m just laughing, crying, and using every curse word I know.

Then the bellman comes up with all the boxes I’d had pre-shipped with my books in them, takes a peak in the room and is like, “Do you need anything else?”

And I just give him this look like “ARE YOU JOKING RIGHT NOW?”

The situation concluded with:

  • me managing to not get any blood all over the bathroom (which my mom was pretty sure was going to happen.) I did this by capping both my midline clave and the infusion tubing over the sink at lighting speed.
  • me injecting five syringes of heparin into my line. YES, I realize you are not supposed to inject heparin in a midline. Unfortunately my blood was as thick as tar at that point and heparin was the only way to get it out.
  • my mom handing me a hanger and me wrapping a new bag of fluids over it and hanging it off of the side of a bed frame.

And after all that, you know how much this stable, swollen, troublesome line was able to infuse?

 

Less than an eighth of a bag.

This isn’t some catastrophic, blame it on the plane ride, blame it on the broken IV pole situation.

This is Wednesday. Wednesday with chronic illness–just in a hotel room instead of my bathroom.

It isn’t for the faint of heart, and traveling with someone like me isn’t for everybody. It’s hardly for me. But I do it when it’s worth the effort and physical consequences. And this trip, despite some hiccups–was worth every bump in the road.

Many patients can’t make it to this conference (or other chronic illness conferences like it) because traveling with a chronic illness is rough. Not just for you, but for everyone with you. But if you can get through the chaos, there are some great moments–and I can’t wait to share them with you in Part 2. Check back later this week!

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