Saturday, March 31, 2012

Sex, Disabilities, and minding your own damn business

I want to share something that transpired not too long ago - just a few weeks ago, really. I had been waiting for some time to pass so that I'd be able to step away from my rant, wipe the froth from my mouth and rationally explain the situation. You know, after I banter around bombastic vulgarities. 
Consider this your warning if you're not one for such words!

I know - you're all thinking "What? TWO rants in one week? Has someone been peeking at my Christmas list?"

Ho Ho Ho, bitches. You've been very good children.
So here it goes.

So, my friend Terese* goes to this pub that has trivia on Tuesday nights. I started going along with her to help me get out of the house and socialize, etc. And what do you know, fucking trivia is fun and we've won some shit. Cool.
Well, I missed a week and when I returned on the 6th of March there was A New Guy. I had been warned about New Guy by another friend so he wasn't a total surprise but he was certainly out of place with our little group. It wasn't so much his age difference since our ages range from late 20s to It's Not Polite To Ask a Lady Her Age, but what brought awkward silences to our table and slammed the conversation short was just our different experience in life. New Guy was divorced with 4 kids and he was sitting at a table with 3 women who have never been married or had kids.
It was just a little off for us to relate to one another.

So, Terese gets up to go talk with the guy in charge of trivia and the other girl may not have even shown up yet, I'm unsure, but by this time New Guy knew I have a heart condition because I am physically obviously Not Well (I look a lot more normal now, thanks) and I am open and talking about it anyway offhanded to Terese, who is a friend from high school and knows my shit.

Anyway, Terese toddles off and leaves New Guy and I at the table. He leans in a bit and says something akin to,

"I am curious about something - and you don't have to answer if you don't want to - but with your heart," - he makes a gesture to his chest - "Can you have sex?"

I'm gonna just sit back and let that sink in for you.

Yeah.

I know.

Instantly, my brain thought, "OH WOW. I DID NOT REALIZE WE WERE LONG-LOST BEST FRIENDS WHO TOTALLY KNOW ONE ANOTHER - I MUST HAVE NOT SEEN YOUR FACEBOOK REQUEST!"

So, I had two nano-seconds to decide what to do:
1) Go balls to the wall ballistic on his ass, call him out on his ill manners and rip him a new one
OR
2) Answer him honestly

I went with #2 and for these reasons:

1) Believe it or not, I am not all that witty outside of the written word unless I've had an appropriate amount of time to digest something and think on a comeback. I don't even attempt to verbally spar with my more quick-tongued male friends unless I've been harboring a snappy comeback in my brain for days. So going ballistic on this guy would really entail a lot sputtering and childish name-calling on my part because I didn't have ample time to think of a real nice answer that would not only embarrass him but school him a little.

2) Disability or even just chronically ill Professional Patients (however you want to spin it) needs a positive face and positive image for these healthy people who don't even know the word congenital (as this asshole didn't) They need a little schooling so they don't make stupid assumptions and think that just because a lady has something wrong with her ticker she can't get down and dirty. Sex and "disability" is something that needs to be addressed more and here was the perfect opportunity for me to knock down walls of ableism and stupidity.

3) The night had JUST GOTTEN STARTED. What the hell was I going to gain by ripping him a new one when I had at least 2 hours more to suffer with his presence? I really had no choice.

So I rolled my eyes and said, "Why does everyone ask that?" (because believe it or not - NOT THE FIRST TIME SOMEONE HAS ASKED ME) and I just said, "Yes. I don't know why anyone would assume otherwise. Yes."

Soon, Terese was back and the topic was dropped but the more I fucking thought about this situation...the more uncomfortable and angrier I became.

Like, WHO THE FUCK ARE TO ASK ME THAT? I AM A FUCKING STRANGER, YOU DICKHEAD. YOU MET ME LITERALLY FIVE MINUTES BEFORE YOU OPENED YOUR UGLY MOUTH AND INVADED MY COMFORT ZONE WITH YOUR ILL-MANNERED, CREEPY AS FUCK QUESTION.
ON WHAT FUCKING PLANET, IN WHAT FUCKING GALAXY IS THIS AN APPROPRIATE QUESTION TO ASK A BITCH? NONE! NONE, ASSMONKEY, NONE! THERE IS NO FUCKING PLANET IN ANY GODDAMN GALAXY THAT YOU OUGHT TO BE ABLE TO GET AWAY WITH THAT FUCKING SHIT.
DID YOU REALLY NOT THINK I WOULD BE OFFENDED BY YOUR INABILITY TO MIND YOUR OWN DAMN BUSINESS? JUST BECAUSE WE ARE IN A FUCKING PUB DOESN'T GIVE YOU LICENSE TO BE RUDE TO A WOMAN (OR ANYONE).

Seriously, what is the REAL motivation behind a question like that? If a significant other had been present, do you think this cock-knocker would have asked me that? NO. NOT AT ALL.
It really is as if he saw me and thought to himself, "HMMM. HOW CAN I BE THE CREEPIEST CREEPER IN ALL THE LAND? ZOUNDS! I THINK I HAVE IT!"

Or perhaps, "SURELY, THIS RAINBOW-HAIRED LASS IS OPEN TO QUESTIONS THAT GIRLS WITH TRADITIONAL HAIR COLORS THINK ARE TOO INAPPROPRIATE! I MEAN, HER HAIR! IT'S GOT PINK and PURPLE and BLUE! SURELY, SHE IS LOOSE AND INDISCRIMINATE! AFTER ALL, I AM DOING THIS GIMPY BITCH A FAVOR BY ACTING AS IF SHE IS A SEXUAL BEING! BAHAHA!"

Truly, I have no idea what his motivations were - if there was a hidden "I wanna get with you, girl" agenda or not - but I firmly believe he felt it was totally OKAY to ask me that.

So now can we address the sheer level of CREEPY of this guy and how he fucking waited until my friend, my anchor of familiarity and comfort, LEFT THE FUCKING TABLE before he asked me that question. I sure as shit don't believe for an INSTANT that he would have asked me that had she been there the whole time (not at ALL her fault by the way - she should have the absolute right to assume I'm not going to be alienated in the 3 minutes she took to speak with somebody)

So here is a lesson to be learned by all of us: There are asshats no matter where we go in life and they will think the sun beams out of their ass and they are doing no harm in asking a totally private question - BUT THAT DOES NOT GIVE THEM THE RIGHT TO BE ANSWERED.
If you are EVER asked this question or any question outside of your comfort zone, I want you to keep this post in mind and be better prepared than I was and fully armed with an array of answers to pick from.

1) "Actually, that is an incredibly private question and I am embarrassed you would even find it appropriate to ask me that." (insert disapproving scowl here)

2) "You're fucking kidding me, right? You just totally asked a perfect stranger that?" (insert loud and condescending laugh here)

3) "Why, are you offering? Because I am so beyond not interested." (insert suspicious glare here)

4) *dump your drink on his head* "Oh, I'm sorry - I thought we were having a contest of the most inappropriate things one can do when meeting someone for the first time. You win."

5) Make the Leonardo DiCaprio Inception stare:



Don't break it until he apologizes/looks away and changes the subject.

Any of those responses should work on your next creepy questioner.

As for this guy, after we used his worldly knowledge to establish our victory and a $30.00 gift card to the pub, I later told Terese how uncomfortable he made me and she essentially told him not to come around no more.


Leave me a COMMENT letting me know how you've dealt with stupidly inappropriate questions from total strangers.

Now go practice your Leo glare.


* = name protected to save her the embarrassment of being associated with me.

Thursday, March 29, 2012

RRRRRRRRRRRRAAGE!

I have recently discovered the glory of Hulu and while catching up on a show I regularly watch, Hulu suggested - of all things - the episode of How to Look Good Naked featuring Heather McGee, who has a congenital heart defect. It was the end of season 2 finale, I believe, and I really didn't need to watch it because I was actually there at her surprise fashion show party. I was too overweight at the time to model a dress but the producers let me kick back all day and hang out with my friends and join the party later on. It was a very fun evening and I am pleased to report Carson is a big fucking sweetheart who really does give a shit.

OK, so I usually give exactly zero fucks when it comes to comments left on Hulu videos but I got curious to see what people thought of the episode and much to my chagrin I read this:

I wish he'd do a girl who actually has some body issues. A scar or two really isnt that hard to get over. But then again who knows. *shrug*

Bitch, I will fucking cut you.
Are you fucking serious with this ignorant ass comment? Who the fuck are you to play judge and jury on the way someone views themselves? How dare you fucking undermine and invalidate Heather's worthiness of being on this show. This isn't even about Heather as an individual - it's about the fact that she, like many of us, have "a scar or two" and how that equates to being unworthy of being featured on How to Look Good Naked.
I wonder what percentage of a CHDer's body needs to be covered in scars in order to be deemed worthy enough for this concerned viewer?

I consider myself one of the fortunate people who did not have scar-related body image issues (I have other issues that give me body image woes but that's neither here nor there) but I volunteer with kids - LITTLE KIDS AND TEENS - living with congenital heart defects and every year I always get a kid or two who opens up and shares their body image insecurities with me. Because they trusted me enough to share their scars - not just the physical scars, but the emotional and psychological scars.
Hell, Camp del Corazon was FOUNDED on the observation of a cardiac kid having body image issues.

So don't you fucking tell me that Heather, these kids, or anyone else living with CHD is unworthy of a little love and attention from a Queer Eye Guy whose only crime is wanting women to see how fabulous they are in the skin they're in.

So, "who knows" YOU KNOW WHAT? I FUCKING KNOW.

Now get the fuck off my lawn.

Monday, March 19, 2012

How to Woo Your Social Worker

My last post discussed the necessary evil that is Medi-Cal, or medicaid. Now it is time to take a giant step back from my fragile little ego and share with you some facts and helpful hints on what I like to call wooing your social worker.

Let's be real - we have a broken system, but that is no reason to blame or take it out on the people that work for said system. It's like my daddy said,
"Rachael. These people don't wake up in the mornin' and think, Gee, who am I gonna screw over today?"

He had to say that to talk me off of the proverbial ledge when I was having one of those insurance related panic attacks over something that wasn't really a big deal.

Important Aside of Importance: Now, I do hear of cases where people just like me - poor and sickly - get rejected. It is not totally unheard of that someone lets their bad day get to them and they take it out in their work. I was rejected twice before finally being accepted. Nothing had changed, really, not in the realm of my health or income. In fact, when I was finally accepted I was working and going to school. So yes, some miserable people are out there and you're just going to have to fight their bullshit.

However, the focus of this post is strictly on the social worker (which everyone on Medi-Cal is assigned) and even some helpful tips when you have to go into the Social Security office because some scary worded letter you couldn't decipher told you to.

When Going in Person
- Trickier than just a phone call because you have to be open and friendly from head to toe, so you're going to have to check your body language and disgruntled Professional Patient baggage at the door.
- Start off with a bright and bubbly "Good Morning!" (I'd say the alternate to that in "Good Afternoon!" but let's be real, do these places ever stay open beyond 12pm?)
- Offer your hand (to shake, not marry) to the person you're meeting unless it's just the behind-the-plated-window-glass person. Do not try to shove your hand up that tiny ass half-circle they've got going on. You can, however, practice your bubbly "Good Morning!" on the window person and note tone, inflection and sincerity by their reaction.
- Before you begin whatever business you're there for, take a moment to ask, "How are you?" or "How is your morning going?" This shows the social worker that you recognize they are an individual who is just doing his or her job.
- Compliment them once. Do a full scan over your social worker's desk and person and find something you can compliment them about. No need to be excessive and do it more than once, and it helps if you find something you do actually like - I usually go for a fun manicure because I appreciate a colorful set of nails.
- Be organized. If you had to bring paperwork - say, a bank statement, pay stubs and tax forms, have it all in a neat folder and ready to hand over when asked.
- Have a list of prepared questions in hand so you're not struggling to speak. When I first started playing this awful game I would sit there, confused and bogged down by my own silence, not getting the answers I needed to succeed because I was just too terrified to ask questions.
- End your visit with a smile and a sincere thanks for their assistance. Handshake optional.

You'll notice some overlap between the above and below, but there are some new tips too.

On the Phone
- Check your fear and anger. Don't jump on the phone the minute some confusing or bad news comes your way. Calm down, have a rant online or on the phone, maybe fix yourself a snack to give your brain a little happy. Watch cute animal videos on YouTube or your favorite comedian to lighten your black mood. This is vital.
- If you have a tough time explaining yourself or keeping on track, write down the issue at hand so you can look at it for reference. You don't have to be a magical wordsmith like moi, just a sentence or two and some key points.
- Have your paperwork in hand, make sure your Case # is present as well. These folk are too busy in their day to remember your name and yes, we are all just numbers living in this Brave New World.
- No matter how long you have to wait on that line and listen to whatever bullshit muzak or automated info babble, you start that conversation off with the sunniest, most cheerful, "Hello! Good Morning/Afternoon!" you can muster. It gets shit off on the right foot and lets the social worker know you're not going to scream at her/him.
- Before you begin whatever business you're calling about, take a moment to ask, "How are you?" or "How is your morning going?" This is HUGE with phone conversations. As above, this basic courtesy informs the social worker that you recognize they are a real person on the other end and not some nameless worker bee. Bonus, this small pleasantry can break down their defenses as well and it'll remind them that not everyone on the other line is a rude leech.
- Steal their thunder. A little playing dumb/self-deprecation goes a looooooooong way. Call yourself out on whatever you need help with. Something like, "I know the answer is probably staring right at me but would you please explain..." or "You know, I'm realizing now that I'm not as clever as I thought I was because I just can't seem to figure out..."
- Joke and make light of the situation. It goes hand in hand with the previous tip.
- Write shit down as your social worker is instructing you. Always keep several pens and pads of paper next to your phone and take notes. This isn't really part of the process of wooing, but in case you need someone to repeat what they just said you can let them know you're writing it down "So I don't have to call back and bother you again!"
- Reiterate what they say back to them to let them know you understood and are listening.
- Always be sure to end your conversation with, "Thanks so much for your help. You have a nice day." Or something akin to that. Thanks and Well Wishes leave people with a nice, warm and fuzzy feeling.

I have come away from so many social situations a wiser, more learned person. With each lesson my communication skills have grown stronger (well, I think so anyway).
All of the above tips may seem like basic manners 101 but we do get caught up in our drama and sometimes forget that "the enemy" is mostly never the person who is actually designated to help us.
If you need help working some wordsmith magic, please don't hesitate to contact me and let me know. I'd be happy to help.

Thursday, March 15, 2012

Beware the Ides of Medicaid

Today I received my Medi-Cal re-determination papers. They come every March and the fact that I received this years on the "Ides of March" is pretty fucking telling.

I don't talk about insurance woes very often because...well, it's just not something I've really been able to laugh about. Ever since turing 21 in 2003 I have had a roller coaster ride dealing with the Social Security Administration and Medi-Cal, California's own special brand of medicaid. Going through the wringer with both of these institutions has put a lot of regret, anxiety and stress on me. I had more panic attacks in the 2006-2007 than my in my whole life combined. I was assaulted with nonsensical notices and changes at every turn and for two solid years I refused to go near the mailbox. Every penny I earned was scrutinized, judged and come every paycheck, a decision was made to either reduce my benefits or keep me on. I was a hamster in a wheel, running and running and running. Unlike the hamster, my life actually depends on it.

After being able to logically sit back and assess the situation I've figured out the matter by which we are judged so fucking mercilessly. You see, unlike Medicare, which actually takes MY HEALTH HISTORY into consideration and cannot ever deny that I'm a person who will need constant, life-long care, Medi-Cal judges me purely on financial matters. This makes sense to a certain degree. Medi-Cal was created to help those of us with low-incomes to receive & finance medical care. Pretty nice, right?
There are two dark points to Medi-Cal and I'll address both

1) Social Stigma brought on by Fuckheads
You hear it all of the time; some asshole scamming "the system" to freeload off of taxpayers money so they can sit on their ass all day and contribute nothing to society. This is probably the main reason why I don't publicly speak about my being on Medi-Cal. I don't want the bullshit judgment that comes along with it.
I'm not going to lie, though. There are definitely a bunch of twats who scam the system. I don't know any of them personally by name and I couldn't pick them out of a line-up, but I know they're there. It's due to these dregs that Medi-Cal sends out these re-determinations papers and examines every single penny earned. This is why I don't think the TSA is all that intrusive. I deal with this insurance bullshit on a regular basis. The pat-down is a lot friendlier and welcoming.

Secondly, and the more alarming flaw with being on Medi-Cal:

2) Beneficiaries have to remain poor to receive benefits. Always.

Unless some magical windfall happens like the lotto or a great aunt leaving her fortune to us, or The Job of Your Dreams is landed with enough of a pay to cover our medical expenses, Medi-Cal sets us up for constant poverty and failure to dig out of the hole of financial despair. I would need to make roughly double, maybe even triple, the amount allocated to Medi-Cal beneficiaries in order to cover whatever Medicare does not. That's purely medical costs I am taking into consideration - not living expenses.

My problem is - where is this magical job that is going to be super cool about me missing work for medical appointments? About taking time off for surgeries and subsequent healing process? What if, like my last surgery, I get an infection and I'm out of commission for 4 months?
This is why when I quit my career in child care I knew, ultimately, I could only be an agent of one. A freelance writer. And y'all know just how rare those are nowadays.
So it's been slow going and everything from my bank account to how long I travel is domineered and dictated by a force I cannot be without.

Trust me, there are moments where I have given serious thought to turning in my US citizenship in favor of a country that has more appealing healthcare. Ultimately, though, I want the USA to work it the fuck out.

It is unquestionably the shittiest part about growing up with a congenital heart defect. Brace yourselves, adolescents, you are in for a bumpy ass ride.

LEAVE your comments, questions, fears or rants on the medicaid system!

Wednesday, March 7, 2012

On Mothers and Their Sick Children

I am sitting here debating taking the bus to pick up some bullshit items at the grocery store. Under normal circumstances I would not put this up for debate so heavily. Do I have the time? Check. Is the weather nice? Check. Bonus points for my mp3 player being fully charged so I do not have to interact with my fellow human kind.
Check Check Check.

However, these are not normal circumstances. I have been horrendously ill since mid-November and have only seen real progress in the last month. First was the surgery, which was expected. It was immediately followed by Mystery Illness! that was subsequently followed by C.diff and dealing with the hell of getting rid of that. Now it's a metric shit ton of collected fluid in my abdomen, which I have slowly but steadily been pissing out. Hurray. I'm not 100%. I'd say I'm about 85%-90%. This is the healing homestretch and these next couple of weeks are crucial.
So I understand that with what is unquestionably the Worst Healing Time Ever to date in my life, my mother, always in Lioness Mode, has set her phaser to SMOTHER.

But I gots to get shit done.
Shit includes running errands, which I was previously forced to wait for her to have the time to chauffeur me around to accomplish. I had no problem when I felt like shit and couldn't walk down our staircase without feeling winded. Times are changing though and I am not just in need of getting back on my two feet but I am going stir crazy! I need to get out, for my own mental well being.
Trust me, no one is more capable of sitting on her ass and watching Dog the Bounty Hunter for ten hours straight, but I can self-discipline myself now using the unspent energy I have to do what I need to get done. Even if it's just running to the grocery store for some ingredients for dinner.

Maybe some of you Chronic Illness Kittens will understand. I respect my mothers concern for me not wanting to be out on public transportation and exposing myself to all of those nasty germs...but I now need her to respect my bid for independence (so little that I have of it anyway) and allow me to let her go as well. She needs to not plan her weekends around me, her tiresome evenings after work that even when she does fit in a trip to the gym she now has to pop in at the store with only items for me so I can cook. I am perfectly capable of doing these things.

I'm not cutting the apron strings entirely (that would require money I do not currently earn) but loosening them a bit with the promise she can tighten them up come next bought of illness. Because there will be a next time. There always is.

And Lion Mom will be there to swaddle me up, make me a cup of tea and run to Trader Joe's for kimchi and beer.