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!

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.

Really on the mend

I've been literally pissing away what ails me ~ taking a metric shit ton of diuretics to assist the grand flushing of my abdomen. It's been going well, though I got off to a rocky start. I'm down to 155 or so - about 20 lbs. since the fluid collected. Dudes, I haven't seen 155 in like...years. If this shit hits the 140s I am going to officially declare all of this was worth it.

A light at the end of the tunnel

So, last Monday I went and saw a gastrointestinal specialist who took one good look at my poor, deformed body and wasted no time in getting me for a doppler ultrasound (to make sure there was no blockage on the veins & arteries around my liver) and an abdominal paracentesis, which is fancy medical language for WE GONNA TAP YOU LIKE A KEG AT A FRAT PARTY!

Sloshing around with this huge belly for the last few months, I already knew we were going to have to do this manually but holy fuckballs was I nervous. Twenty-two years ago I had my second open heart surgery and the day after I was released from the hospital I "sprung a leak" on my right side where my stitches (from tubes) were. I went back via ambulance and was drained manually - still awake and screaming my head off in massive pain. I believe in out of body experiences specifically due to this event in my life because I have a crystal clear memory of sitting up in a small examining room as a bunch of staff held me down, me with my eyes closed screaming at the top of my lungs as they did whatever the hell they did then to drain me - probably a tube.

The next day I went into full blown tachycardia. One of the first times in my life, so it was still new and frightening to everyone. So you can imagine how my mom and I were having flashbacks like a Vietnam veteran when we knew this is what was going to happen.

The ultrasound went off without a hitch, that was one of the best tests ever done, due mostly to the fact that my sonographer was made of pure awesome (as most are). Come Friday, however, when it came time for my tap, it really took all of my energy to not bolt.

I don't puss out on medical tests easily but I am a big baby when it comes to
1) ANYTHING to do with my stomach, as it is incredibly sensitive
2) Novocaine/skin anesthetic because it is hit or miss if I will have a bad reaction to it

So, I get an IV in because they're also going to be pumping in a solution that will help keep my fluids regular and prevent (hopefully) vertigo and other bad reactions. We wait forever for some blood tests to get in and then I am escorted to the room it'll be done in. My doctor comes in and introduces himself.

Now, I don't normally give out the names of medical professionals I see because I doubt they ever want to be associated with me or this blog but I have to share this with you.
His name is Dr. Moriarty.
No. Fucking. Shit.
You bet I gave him hell. I cackled right in his face and let it be known that my mom and I are life-long Sherlock Holmes fans. He winced, obviously having lived a very painful life full of mockery in comparison to one of the greatest literary villains of all time. I failed to tell him I'd CHANGE my name to Moriarty if I had to taken on any villainous last name. It's a cool name, for one, and second - it's a cool fucking name!

So they shoo out my mom and get me prepped and I am a big bag of whimpering wuss right now. Jose, the assisting tech, could not have been the more ideal individual to be on duty that day. He set his iPhone Pandora station to oldies for me and held my hand good and tight as EVIL DOCTOR MORIARTY (just kidding, he was super nice) stuck me with that goddamn needle, on the right side of my abdomen.

And golly gee, folks, wouldn't you know it? It hurt like a bitch.

There were tears and screams and I'm sure the rest of radiology was wondering if the good doctor was indeed living up to his infamous name. Which I had full intentions of Giving Him Shit For with every crack under the sun but damned if that pain was so scathing-joke-repellent that I just couldn't muster the brain power to ask him how his evil laugh was coming along or if he had pushed anyone off a cliff lately.

Jose was such a trooper, holding my hand, brushing my hair back from my face, and telling me how good I was doing despite being a total pussy. They were pretty amazed I was in as much pain as my ear-shattering shrieks indicated, but yes, folks, hate to admit it - it was that shitty for me. I know it is a walk in the park for some people to go through but not for me.

It was all over within 20 minutes and three liters had been taken out of my abdomen - can you believe it? I weighed 10 lbs more just SIX DAYS AGO! Wow. I instantly felt lighter, emptier, in my abdomen area. After waiting out the minor dizziness I had and having my IV removed, I headed for the cafeteria and ate a feast before heading home.

I haven't been able to sleep on my right side since the procedure and I have been fighting a little bit with my heart in the arena of palpitations but overall I am doing better. Still waiting for my physical form to "deflate" as it were and go back to normal, but I am one giant step closer to being back to normal.

It still really hurts to laugh and sneeze, though, so once those basic human functions are entirely painless I know I'll be at 100%

Taken from the community

I belong to an online group of adult congenital heart defect patients. I rarely put in my two cents or create a topic of my own but I do pop in from time to time, especially when friends of mine post. There was a topic that came up recently - the original content is irrelevant and a private matter I'm not going to hit the spotlight with right now - but the topic, as always, derailed as people started talking about themselves (as we are all wont to do) and bounce from subject to subject.
I had my own thoughts on some of the side-topics that came up, however, I'm one whose eyeball twitches when the discussion I pose goes off topic and I did not want to be a hypocrite and do that to someone else, so I decided to bring it here.

One topic that came up was the idea of dating a person with a CHD.
I was never attracted to the idea of dating another CHDer - I have enough drama in my own exam room, I don't want his as well. I had enough problems just making friends in this community and allowing myself to give a crap & care and all of that vulnerable junk... I didn't have the luxury of Camp del Corazon (though I could have...Loma Linda *glare*) nor friends outside of the hospital with a similar condition. I never grew up realizing how difficult it is to love someone with a serious illness, to allow them into your life and potentially have to lose them. I know, I know, ANYONE we let into our lives has the potential to have a piano fall on their head and leave us prematurely but death from a betrayal in our own genetic code/failure of science or whatever is just shit. Plus, and I know it sounds egotistical, but it makes us dwell on our own mortality and raises fears & questions nobody wants to face.
In the subsequent years following my entering the CHD community (by way of volunteering at camp) I have lost a couple of people. Children, in fact. That shit stings like a wasp with your name tattooed on it.
So it was never even a consideration or a fleeting thought to date another CHDer. I don't want to go through what my mom, my brother, my friends and my boyfriend have gone through. I don't want to feel what they feel when I go to the emergency room. I don't want to have the scary thoughts about losing someone I love. I dealt with that once - when my brother was in a car accident. I never want to look at a loved one in a gurney again.


Another topic that came up is a super sensitive, highly individualized one: reproduction, what we believe is best for ourselves (as individuals) and how it is approached in a relationship.

I'm not saying this to brag but my guy helped me find the strength to go through with my recent partial hysterectomy. I don't believe in risking the chance of a pregnancy - that small chance of a "miracle" just wasn't that alluring to me. I get the smug satisfaction of adoption instead - but I also had the good fortune of having the idea planted in my head as a small kid. I've elaborated on that before so I won't go into it again but the point is I found a guy who didn't give a damn that I won't bear the fruit of his loins. Some other broad can do that for the right price! I don't even want to use my eggs and thank goodness my guy is with me on that front too because genetics are not in my favor. I want my potential future baby to have a fighting chance, health-wise, and if I have to get a little Gattica about it, so be it.

Aside: I resent the word "miracle" being thrown around when describing the ability to give birth. That's not a miracle, that's science. Miracle by definition is an unexplainable phenomena, usually attributed to supernatural/religious forces. The female reproductive system and gestation of a fetus to infant is perfectly explainable. It's an insult to the technological advances of science through the laborious work of scientists, researchers and doctors everywhere that someone would wrap their hard work up in a tidy word like "miracle." Unless, of course, you just mean it as a synonym for "marvel" as in "the miracle of science." I'm cool with that.