Thursday, May 19, 2011

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.

Friday, May 13, 2011

Raging Waters (of my body)

Anyone else a slave to their diuretic? Afraid to leave their home in case they have to pull over and use every other nasty-ass gas station bathroom when all you want to do is run some goddamn errands? Or worse, you're trying to have a nice day with your friends or loved one and every time they're in the middle of something tender and sentimental you jump up and say, "Hold that thought, I gotta pee."

Seriously. When TEAM RACHAEL! told me that I had to start taking an extra - not even my first - diuretic during the day I was like, "WTF, mates? You think just because I work from home I don't go out of my Bat cave every once in while, just to make sure the zombie apocalypse hasn't happened? What happens if the zombies see me and as soon as I start to run I have to dive into some bushes to take a leak? Then they'll find me and eat me. Good going, TEAM RACHAEL! you're fired."

I mean, really. I'm trying to make a career for myself as an awesome travel, food & event writer (plus ebooks. Coming soon to wherever ebooks are sold) How will I look to my clients if I'm pissing every five nano seconds when I need to be snapping pictures or looking pretty for a camera, huh? I'll look unprofessional and like I'm pissing out last nights whiskey binge that's what.

Don't get me wrong, I love TEAM RACHAEL! and I trust them to know what's best for me (within reason) but I feel like they're so wrapped up in SAVING LIVES that they forget that I actually have a fucking life outside of their office and I cannot just STOP my entire life anymore than I already have so I can be near The Can.

Yeah, yeah, yeah I realize I need to take this pill so that I can relieve the fluid from my body and my liver...so I'll take it, but only when I am just bumming around the house and don't have to worry about getting out of my PJs before four pm.
Don't envy me. I live with my mom.

Wow. I have tackled female sterilization, mortality, and now massive urination. Rock on.

Excuse me, I have to use the restroom.

Saturday, May 7, 2011

Cutting the Apron Strings

In honor of Mother's Day, I want to have an open discussion about cutting the apron strings. I only very recently evicted my mother from attending regular cardiac and pacemaker check-ups. Let's be real - I don't drive, I was just kind of going along for the ride these last few years. I started slowly, letting her tag along but not come in the exam room, until finally I decided enough was enough. I took the bus by my own damn self - two buses, in fact! - got my ass down to Wilshire where I met up with a friend, (oh yeah, that's right I have an entourage) and together we went to my appointment.

Until the whole drama with the lady business and No Babies Club, I've been doing this routine or a variant of it without my mom.

I won't lie, I felt guilty the first time I told her to stay at work like a damn adult. I was way more upset than she was, I'm sure.
She was like, "OK, whatever, you're taking up precious LOLcat time. Goodbye."
And I was like, "OMG! I just told my mommy to fuck off and never come to my doctor appoints. She gave birth to me and this is the thanks I give her, what a complete and utter twat I am!"

I got over it pretty quickly. It's been fairly liberating and I feel like a Grown Ass Woman (never mind that I still live with her). I've never gone to the cardiologist completely alone, but I think there is something to be said for having some kind of company. Moral support and what not.

Now, I am not here to shit on anyone who does have their parental unit(s) tag along to their appointments still. The real purpose of this post is to get some feedback on this topic.
OK, so hit the "leave a comment" button, prove to me you're not a troll by filling out a CAPTCHA and answer the following questions:

ANSWER ME:

1) Who, if anyone, do you take to the cardiologist?

2) If you no longer have your folks come with you, how did you start going alone? Was it a difficult process or did you just cut them off cold turkey?

Thursday, May 5, 2011

Top Ten Vital Facts My Doctor Should Know

I'm sitting here drinking this fruity mineral water concoction of my own making, wishing it had vodka or at least half a pound of sugar in it but nooooooooo, I'm trying to monitor my weight so I can fit into a size 10 hot pink Calvin Klein dress that I bought for 70% off at Ross so I can look hot when I go out on the town with my girls in Toronto next month. Oh, and heart condition...yadda yadda...weight management...blah blah blah...low-sugar.

The point is I'm sitting here thinking about one of the conversations that popped up during the ACHA conference. It was something along the lines of scary ass medical "professionals" who don't know jack shit about a congenital heart defect. I cannot even tell you the amount of times that I've said "tachycardia" to an emergency room MD and had them look at me like I'm talking like the adults do on Charlie Brown. OK, that is a lie, I can tell you how many times: three. I won't go to ER's that look at me like that anymore.

Then that train of thought got me to thinking about what is it that I want in a medical professional...what are the most vital facts I want a member of my team to store in their brains and whip out to impress me and let me know that they really care? I'll tell you.

In order of importance, here are my Top Ten Vital Facts My Doctors Should Know

10) The current season of America's Next Top Model, including who was just eliminated. Be prepared to discuss and possibly argue about your choice for a winner.

09) Tachycardia. The definition, how it effects me, how to spell it, how to recognize it in a line-up of other arrhythmia's and how to treat it.

08) My policy on medical students and residents and the "no touching" rule. They need to warn these fuckers before they get too close. I bite.

07) Harry Potter series. The books, not the movies. Be prepared to explain your favorite character(s), book, couple and why. Feel free to tear up as emotions overwhelm you.

06) My weight. I never want to step on another scale again, so just pick a number and let's stick with it. Don't be a commitment-phobe.

05) My medications, including doses.

04) Being up-to-date on any of the following TV shows: Dexter, True Blood, Game of Thrones.

03) You are afraid of me more than I am of you and damn near everything I go through will wind up on the internet. Also, Offbeat Follies is required reading for being on TEAM RACHAEL! except for when you're too busy saving lives.

02) My diagnosis. No, you may not look at my chart. That would be cheating, and if I couldn't get away with it in 9th grade Earth science (oh, wait, I did) then neither can you.

01) Even though I'm a tough, f-bomb dropping cookie on the outside, I'm really soft baked and vulnerable on the inside and I look to you for saving my life.


It should also go without saying that when you're on TEAM RACHAEL! your only patient is Rachael, er, me. At least when I'm around and within ear-shot. ;)


What are your Essential Facts that all members of your medical team should know?

Monday, May 2, 2011

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.