The Ghost of Douchebags Past

Ok, I have to share something that happened at the ACHA conference last month. I enlisted my mom to come to the conference on Friday and Saturday and hit up the panels I couldn't make because I was either
(a) in another panel at the same time
(b) napping by the pool

So, on Friday we're texting back and forth as hop between our respective panels.

I text: "Where are you now?"

She texts: "I ran into your old doctor."

I text: "Dr. UCLA?"

She says: "No. From Loma Linda."

Now, I get excited because I'm thinking OMG! It's Dr. Sehra! He left the clinic to pursue research at the same time I left LL to go to UCLA. We really loved one another and got along swimmingly. He was the first cardiologist I felt safe with since I parted ways with Dr. Muhammad Saleem from Childrens Hospital of Philadelphia a decade or slightly less earlier. It had kind of been a shit storm until him, and since we lost touch I got excited thinking he might be at the conference.

So I text, "DR. SEHRA? <3 <3 <3"

She quickly responds, "No."


OK, well, I had Dr. L-, a pediatrics cardiologist. She was pretty cool, no real complaints.


"Dr. L-?"


"No. The one from San Diego."


Now, she is aggravating me because Dr. Sehra DID move to San Diego to conduct his research. Just as I am about to angrily text back, she beats me to it with a follow-up text.


"Dr. Hairybutt*"


* = Dr. Hairybutt is not his real name, obviously, but since I am about to seriously lay out the smackdown I decided it would be best to cover up his identity.


Dr. Hairybutt.

WE MEET AGAIN!

I'm fucking floored. How could this asshole still be in practice? So, Dr. H is an arrhythmia specialist (allegedly) and twice a year I had to deal with his condescending dumb ass when I was forced to go to Loma Linda by my insurance. He is a cocky know-it-all who thought he could "rap" with me because he was the father of teenagers and since I was a teenager at the time, OF COURSE I would just, like, totally relate to him, right? Right?

Fuck no.

He was patronizing, chauvinistic, arrogant and worst of all - he did not listen to his patient, me.


I was having on and off again arrhythmia issues and my mom, observant as ever, was the first one to notice that they coincided with my cycle. She told this to Dr. Hairybutt and he totally blew her off. So when it came time for my annual Holter monitor, my mom made sure to schedule it around my cycle and lo and behold - they finally caught my arrhythmia and found a pattern. I think this incident alone earned Dr. Hairybutt a slap from my mom, but wait - there's more.


During my unstable periods of "random" arrhythmia and atrial fibrillation Dr. Hairybutt wanted me to try Procainamide to control them. Here's the thing: I used Procainamide once, when I was nine years old and my arrhythmia was out of control. You know what happened? I developed drug-induced lupus and childhood schizophrenia. It took years to undo the ravages that medicine left in its wake, only to be rivaled again just a couple years later by atenolol, which turned me into such a monster I was "excused" from school for a whole semester (another story for another time, though). Dr. Hairybutt KNEW this, he fucking knew my medical history and still insisted that I give procainamide a go.
I actually ran away from the exam room in frustration and tears, but I let that butthead talk me into it because of course he's a grown up with a degree who Knows Better. Right?
WRONG.

Within hours my body, wise as ever, reacted with a loud and gross, "OH HELL NO, NOT THIS SHIT AGAIN!" and I was vomiting for at least twenty-four hours. I missed even more school than I already had been, trying to recuperate and recover from the violent reaction my body had to trying to poison it again with procainamide.


Now, if that doesn't earn Dr. Hairybutt a swift kick to the nuts, I don't know what will. In lieu of a swift kick, though, I insisted he was to never sit in on my appointments and dole out his bullshit for the rest of my forced stay at Loma Linda, which I would endure until my 21st birthday. So for the next four-ish years we avoided him. Should our appointment coincide with his monthly venture to LL, we would walk past him like he was a specter haunting the halls of the hospital, on the lookout for another child to shake his chains at and shout a condescending, "BOO! Gimme a high-five! For shizzle!"

Cut-to the ACHA conference over a decade later, I kind of feared for my mom's safety...OK, that's a lie. I feared for her freedom of the next 10 to 20 years because Lord Only Knows what this woman will do if this man has cornered her and is talking in Short Sentences Using Small Words to her. Luckily, when I found her she explained that she did not exactly "run into" him but walked past him in the hall. He did not recognize her and she only had the chills of Douchebags Past giving her a vague inclination that she knew this dude. Then he wound up speaking at the panel she sat in on and it all came flooding back. She wisely decided to sit out of stabbing distance.

The Carnival is Over

Sunday was the last day of the ACHA conference and boy, let me tell you how sick and tired of people I was by the time I woke up Sunday morning. Don't get me wrong - I love absolutely everyone I met this weekend, which is saying a lot considering how much I normally enjoy sitting around and judging others from a dark corner, but there just comes a time at a conference - any conference/convention - when I just hit the PLEASE DO NOT TALK TO ME wall. I need a sign to hang around my neck "Do Not Feed the Rachael...with conversation."

I wish I could share my notes with you, but alas, I'd be cheating and copying off my friends notes like 9th grade French class because I was zoning out through a lot of the panels. There was just a wee bit much lecturing for me...pie charts, statistics, bar graphs and an overkill of Power Point. I stopped taking Power Point seriously by 11th grade/1999.
It's not that I don't take an interest in my heart or the goings on of the medical community, but there comes a point when my brain just can't absorb the information. Like algebra.

Let Auntie Rachael get serious for a moment, kids.

I've worked very hard to have a certain level of detachment and distance when it comes to the world of ACHD and I need to maintain that distance for the well being of my sanity. It's not that I do not care, it's that I cannot allow this world to consume me and my defect define me. Some people really get a kick out of every aspect of the CHD world, from keeping track of every shred of medical breakthroughs, advocacy, to molding careers in health care. I just can't do it.
In that same vein, it may come as a surprise to some of you to know that even making friends within this community does not come without difficulty.

The truth of the matter is, I don't enjoy putting myself out there to others because I do not want to lose you. Letting you into my life...into my thoughts, caring for you...and then potentially losing you? It weighs on me. To be honest, it makes me feel my own mortality all the more vividly. To laugh with you, cry with you and share our experiences, nostalgia, silliness...always with that little obnoxious voice in the back of my head, Maybe they won't be around the next time...

The truth is this shit is scary and depressing.

Oh, sure, technology is catching up but will it save me? Will it keep me alive? Will my quality of life improve over time, or diminish with age?
These are the questions that fuel my stress, and I realistically did not expect to find answers at the conference. Unsurprisingly, no one had answers to these questions because they prey on everyone's mind, including our caregivers.

HOWEVER! What I did take away was a plethora of new friends and a new sense of hope for my future. For the first time in my life I understood that there will always be someone who empathizes not only with sincerity but with experience. I also got to witness TEAM RACHAEL! rock out in such a way that made me the proudest professional patient in the history of chronic illness. Y'all throw a good hoedown, kids.

My new friends are awesome and with any luck, we'll remain friends for the rest of our lives.

Yes, I have lost friends and peers. I have lost children once previously in my care. Yes, continuing to forge new friendships comes with a certain level of trepidation.
I push through it, though.
The purpose of life is to live it. Like a boss.

Adults with Congenital Heart Defect Conference

Well, love-monkey's, you are going to have to wait a few more days before I can get to part IV of No Babies Allowed because tomorrow I'm packing a suitcase and headed for a four-day adventure at the LAX Marriott for the Adults with Congenital Heart Defects Conference. I'm in charge of the social committee, if you can believe that shit, and I'll be doing all sorts of fun crap in the Hospitality Room starting tomorrow. We'll be playing icebreaker games, scavenger hunts and all sorts of ways to force friendships upon strangers.

If you're going to be there, come up and say hey. I promise I won't bite - unless you interrupt me as I'm napping by the pool, 'cause that's where I plan to be in between panels.