Sunday, October 7, 2012

Sunday Confessional: Walking the Line

I do not come from a family that applied any undue pressure on me to "settle down." The same can be said for my brother, who has been living in blissful sin with his lady love for a number of years. Our parents could just never be arsed to tell us what to do beyond "Get your elbows off the table"; "Don't talk with your mouth full"; "Mario, stop hitting your sister"; and "Rachael, lower your voice." Even the former dropped somewhere between my junior high and high school years.

So having kids - ah, correction - the desire to have children comes as a natural maternal urge within me, as opposed to a necessity built on societal and familial expectations. It has always been there; as far back as I can recall, as far back as my mom can recall. Harkening back on my pre-memory making days, mom recalls how I played with baby dolls in a way she never did; she who hacked off my hand-me-down Barbies' hair off never had the desire to cuddle a plastic doll to her chest and play house. Mom was about Creepy Crawlers, Erector-Sets, Chemistry Kits, and Mini Private Eye play sets, whereas I wanted stuffed animals, My Little Pony, Sweet Secrets and Care Bears. Gender biased be damned, Mom's tomboyish nature was not connected in any way to her maternal urges and children came to her at a "ready or not, here they are!" young age. So when her own ragamuffin took to dressing up her kitten with doll clothes and referring to it as her "baby" mom figured it was only a matter of time before I'd be opening Rachael's Orphanage for Wayward Children.

Which was, of course, a problem in the sense that my health was poorly and probably going to remain a jungle of issues throughout the duration of my life. Children...should not be an option, all of the adults decided for me in my early life. Well, decided for me is not a wholly accurate term as I do not believe anyone would have snatched my uterus from me like thieves in the night. I believe the correct way of describing this is my mom and my doctors took an active role in making sure my forming brain knew there were other options available in the wonderful, wide world of child rearing. 

It is a fact that my first preschool teacher, who ran her care from her certified home, was also a foster mother, and whose (then) two (eventually three) children were adopted. Whether this was just a twist of kismet or if this was a domineering factor in my placement in her care remains to be known. Either way, from the age of three onward my mind was aware of foster children, adopted children, mixed-ethnic families, blended families. It was part of the norm right when my brain was developing, coming to realize there was indeed a world wider than the span of my arms.

For years I didn't have the need to worry about these silly, grown-up and seemingly faraway troubles. I had fun in my childhood, in spite of my health, climbing trees, wading knee-deep in the creek that flowed not fifty yards from my house, riding my bicycle to the neighborhood convenience store and spending my allowance on a slice of pizza, candy and a rented movie. These were my simple joys in life. Kids...they were always "Some day" while I was content enough to be the mother figure of my friends, of the younger children in my annual summer day camp, of the younger children I shared a hospital room with at the Children's Hospital of Philadelphia.

Then...

An incident happened. Something so deeply personal, not really to me as I was an unfortunate witness, but to someone I once called a dear and best friend. Though we are no longer in touch, I feel it would be a disservice to her to share her past with the world.  Let us say an incident happened, one that changed our friendship dynamics forever and made me suddenly hyper-aware of my desire to have children, of the actions I must take to not let this happen prematurely and even if did...what then?

What then indeed. For the first time in my life I experienced resentment toward this situation; it was no longer acceptable to adopt children. What about the joy of naming a child? Of that new baby smell? Of being able to beam with pride when strangers complimented me how much my child looks like me? Of noticing inherent interests, behaviors and quirks? Why was I to be robbed of these things? It wasn't fair and I wasn't going to accept it.

I consoled myself with child care; I took Regional Occupation Program classes in child development, earning myself a certificate by the age of 17 as I spent time out of my school day volunteering at St. James Church preschool, got an after school job babysitting in both my junior and senior years and eventually a full-time nanny position as I went to college for early childhood development/education. 
My career in child care was cut short in 2008 after my health was too effected by the germs my little petri dishes carried around themselves, making me ill if they so much as coughed in the next room over from me. It had been a good decade full of high's and lows, with many a funny story to share with others. 

So I returned to writing, telling myself that I was starting to lose my patience working with kids anyway, and that it was going to ruin my temper for my own children, so best to get out now while I can repair what nerves a tirade of irritating parents and their coddled children didn't trample to death. I'd already been well adjusted back to the idea of adoption, even surrogacy. My moment of self-pity was simply that; a moment. 


Around this time I became aware of the "Childfree by Choice" community. I would never say I ever actively engaged in the community, but I admire and appreciate them. Their humor brings me solace and is something I strongly empathize with because I have a handful of friends, not to mention my own sibling, who is childfree by choice. Despite kids always being part of my agenda, the active decision to not have kids was never weird or unusual to me. The fact that there has been such pressure, ostracizing and social taboo placed on these good folks for simply not populating an already overpopulated planet with their offspring is just mind-bogglingly ludicrous to me. 

So I walk a fine line; a balancing act between laughing with abandon at those sorry enough to take themselves and their offspring seriously, to revel in my ability to sleep in however late I so please, to pick up and take-off whenever I so please; balanced against  the ache I feel when I see infants snuggled in a makeshift sling as mom shops the Farmer's Market, little shoes, dresses and overalls hanging on little hangers in stores, and elementary school Halloween parades.

The line had to be crossed last year when I decided to take my women's health issues into my complete control and, as I so eloquently worded it recently, "dumped my uterus like a bad news boyfriend." Truly, I did not have to cross that line. I could have gone as I had been: on another pill, a limited sex drive, 7-10 days out of my life dedicated to pain, unpredictable heart arrhythmias, and more blood than a Freddy Krueger movie. All of that without the guarantee I would not suffer any accidents, accidents that led to choices of life and death, decisions I believe it is a woman's right to make, but unsure I would make it myself. I could have gone on living like that. Frankly, I am a distrustful person and it was that distrust that made me cross the line and say, "Enough of this tightrope act. If I fall, there might not be a net below to catch me. It's time to solidify my loyalty to one team here." 
I chose Team Adoption/Surrogacy. 

People, I am not the most definitive decision maker. Dare I admit it; I am actually quite indecisive. When I do decide to draw a line in the sand, though? I will usually cross it, cartwheel and stomp on it with steel-toed boots.

I walked that line for so long, though, that What If line that is the very definition of my life in oh so many ways, that even though I know the decision I made was the correct decision for my life, my health, my future...It doesn't mean I am not, at my weaker moments, grieving the loss of What If.

Just because it was the correct answer doesn't mean it was necessarily the easy answer.

Friday, September 21, 2012

Your antihero is in the UCLA Adult Congenital Heart Disease Center Newsletter

TEAM RACHAEL! has been a thorn in my side for ages, trying to get me to contribute to their precious newsletter. While you are probably fainting from the shock of me not jumping on the opportunity to talk about myself in a printed form, you will permit me to explain why I was reluctant for so long. 

You see, I'm supposed to write about my life with a CHD and how it's shaped me as a person, or how I've managed to overcome trials and tribulations to achieve my goals and yadda yadda, cheese, cheese, fluff, fluff, fluff. 

On average these newsletters feature patients with families, children of their own, and/or a spouse, and/or a deep enough level of comfort talking about their profound relationship with The Lord that I find unnerving. I have none of these things in my life, and felt uncomfortable being put into such a spotlight where all I could talk about was traveling, a failed career, struggles of a new career, my vile felines, and, like Napoleon on his exiled island, how shamelessly bombastic I am with a piddly little blog. I am not a hero; I don't consider myself to be an inspiration to anyone, nor a wealth of guidance beyond where you might find a good bite to eat in Cork City, Ireland.

However, they kept persisting and I finally caved in. For an embarrassing amount of time I wavered between having no creative flow, to sparks of zealous mania, which I would lose as soon as I emailed TEAM RACHAEL! to tell them I'd found my inspiration, gird their loins and EXPECT BRILLIANCE! 
Finally, I found enough momentum to see me through to the deadline and I scraped by. A couple of my friends have told me they dig it, but they're my friends and that's what I pay them to say. 

Long story short, I was one of the three women featured in the fall edition of the Ahmanson/UCLA Adults with Congenital Heart Disease Center's newsletter. They sent me a .pdf and said they're working on an online edition, which 'should' be up next week. I don't have that sort of patience, so below is what I wrote for them on my life with congenital heart defect.


There is a fine art to maneuvering through life with a complex congenital heart defect, and while it’ll be a while yet before anyone starts calling me Rembrandt, I do all right for myself. Born with transposition of the great arteries and ventricular septal defect with a heart that sits center-right stage (we’re kind of a showboat), and has gone through both a Fontan operation and a pacemaker, I am not your typical cardiac patient. I’m slightly bombastic, a bit cheeky and more than a dash vainglorious. Thirty years of being poked, prodded, studied and talked at has left me just a touch defensive and I have worked tirelessly to construct a perfectly hardened exterior.

I struggled greatly to come up with a topic to write about because the possibilities seemed endless, with the only goal being that I didn’t want this to wind up being a piece of fluff, painting an image of myself I do not necessarily resemble all of the time. On one hand, I wanted to be irreverently humorous, something I can excel at given the right mood and circumstance.

Making people laugh has been a not-quite altruistic goal of mine, as I use laughter to deflect the seriousness of my health. Even amidst my first full-blown episode of tachycardia, which occurred during school hours in the first grade, I was cracking jokes as the nurses office became ground zero 
of frantic phone calls, panicked voices and forced calm for my benefit.
Yet another direction I debated was that of profound earnestness; philosophizing the various coping techniques my peers and I adopted, my own being in the form of a blog. It is easier to mentally digest the chaos my life can be caught up in when I have an outlet to, pardon my crudeness, vomit up my emotions. All of the preposterous, hyperbolic, vindictive and utterly raw thoughts and feelings I possess have a special place of their very own. It may not be agreeable for some, but for me it’s the ultimate catharsis.

Waffling between these options has forced me to accept and now openly admit a hard truth; a truth I realized once I started volunteering with Camp del Corazon and again when I attended the ACHA conference last year. I keep up the hardened exterior to mask my vulnerability.


Not unlike a wounded tiger, I sit alone and surly, watching the rest of the jungle from my dark corner, the façade of pride and judgment. I want to partake, not just the philosophizing joker with a bag of tricks designed to twist your attention from my wounds, but keeping a certain level of detachment has helped me not let my CHD define me as a whole person.


So maybe I’ll spin a grandiose tale about butting heads with a medical official, or repeat something funny that transpired with TEAM RACHAEL! (my medical entourage), but you may not see the true depths of my grievances; the isolation of my childhood, the struggles of a teenager who could not rebel even as her friends did, the young adult who struggled to find her footing in adulthood, and the woman who continues to mourn the loss of her uterus despite not living with regret about making the choice to have it removed in the first place.

No, you won’t see these things because I am too quick with my slight of hand. Did you see what I did there?
 

Thursday, September 20, 2012

Open Call for Women Living with Congenital Heart Defect!

OPEN CALL!

I would like to reinstate my "Heart to Heart" series wherein I interview young ladies/women living with a congenital heart defect. If you are age 17 and up and would like to be featured, please leave a comment or drop me an email! Interviews usually consist of 7-10 questions about you, your life, your life with CHD, your trials and triumphs and I usually ask to include a picture or two, or three (your face does not need to be fully showing). If you're under 18, please obtain permission from your parental unit and have them e-mail me too just so I don't get into trouble.

For reference on what an interview consists of, please refer to past Heart to Hearts.

<3 

Monday, August 13, 2012

Patients for a Moment: How I Roll

I missed the deadline for the August Patients for a Moment blog carnival, but decided to go ahead and post my answer up anyway because I was halfway through writing it when I lost track of time. Oh, well! PFAM is hosted this month by Duncan Cross. This month the theme is:

'How do you roll?’ What do you have to do to travel or just get around?

Well, Duncan, I am so glad you asked that. I am told rather often that I travel on a fairly frequent basis and throughout the years I have had to adjust how I prepare for travel, not just for flights but on a day to day basis. So I'm going to break down both and talk about what I have to go through in order to get around.

TRAVELLING BY AIR

The Practical 
- I fly with what is called a Patient Passport (or something akin to that) A little booklet given out by the Adults with Congenital Heart Defects Association for patients to fill out - medicines, doctors, emergency contacts, allergies, etc. It's very handy to have that all in one orderly little book.

- I also carry my cardiac USB which contains updated .pdf files on all of my latest tests, plus physician notes and a brief rundown of my surgical history. 

- Before I travel overseas I have to get my pacemaker adjusted. This last trip to Ireland put me in a sour patch with my pacemaker clinic because I gave them oh, 24 hours before I came in. 

- Medicines all have to be readily available for the amount of time I spending away from home. This isn't typically an issue save for one medicine, which I cannot have on auto-refill and therefore only strictly receive once a month. I'm fortunate it is not a life or death pill as I have had to forgo a few doses until I reached home.

- I always take care to wear my medical ID bracelet (which looks like a charm bracelet to the undisciplined eye) so if I am stopped by a prying, overzealous employee I have something easily accessible to show that I am indeed deserving of priority seating (or whatever 'perk' it is to be born with a wonky heart). A female Delta agent at JFK has been the only individual to have stopped me in a loud, brutish manner that left me a bit bristled, but otherwise people have accepted me at face value.

Mental, Emotional, Attitude
- I usually try to prepare my hostesses/hosts as best I can without totally frightening them and having them think I am very fragile. I am so desensitized that I can easily forget how scary my heart health can appear to a person with minimal exposure to Professional Patients such as myself. It's pertinent to understand, though, that I would never, ever travel if I were in a poor health. I don't play games with my health.

- I am one of the fortunate people - not just an individual living with a piece of machinery implanted in my body - but overall one lucky lady to have had 95% positive experiences with the TSA. 
The first thing I arm myself with going through security is a cheerful, almost apologetic disposition. I've only had deal with 2 pushy TSA agents overselling the microwaves (Sea-Tac, I am looking at you) but they're generally quick to adhere my request for pat-down (side note: As of yet, I've never felt scandalized or sexual harassed by the pat-down. I am sorry if you have had less than proper humane experiences!) When the female agent comes over I make sure to apologize for the inconvenience and ask her how her morning/day is going. Seeing that I am not agitated or in a hurry seems to make the process go a lot smoother. Do I need to apologize? No, of course not; it's a silly system with a deplorable lack of common sense and humanity. However, I'm willing to put on a smile for the sake of peace. I'm not so blind and self-assured that I believe this is how all of my experiences will be in the future, but I don't see any reason to deter from this routine as of yet.

- Though I do not engage in risky behavior even at home, this goes for double when I am travelling. I hardly drink, I try my best to put in at least 8 hours of sleep each night to ward off illness caused by fatigue and I take heed of my physical limits (e.g. no rock climbing, excessive running, etc.) Listening to my body is never more important than when I am away from home and TEAM RACHAEL!

Day to Day Travel

I do not drive. I quite possibly will never drive, though I waffle with the idea at least trying out for my motorcycle license so I can putt around on a Vespa or of the like. I won't lie; it's tough getting around day to day in a city that is:
A) Incredibly spread out
and
B) Not up to snuff with efficient, accessible, reliable public transit as a leading large city ought to be.

I started regularly patronizing public transit when I was thirteen, so in the subsequent 17 years I have fairly mastered the system and can maneuver myself around as needed, albeit within the parameters that Metro has given the public.

Taking my health into consideration when I venture out is second nature to me, and variables that I factor in are usually:

- energy level (recognizing and respecting my own energy level is easily the top factor in gauging if I am going to be venturing out. Even if I am desperate to go run some much-needed errands or meet up with friends for some fun, I have had to learn not to push myself)

- weather (if it's too hot, I know I won't be taking any buses more than a block or two away)

- germs (If I've been ill I try to wait until my immune system has time to rest before using public transit. I try to carry anti-bacterial hand gel with me whenever I travel, though)

There are so many factors into using Los Angeles public transit that has nothing to do with my health, though, so I'll stop before I go on a tangent. 

Wherever I go, whatever I do ~ I always carry my hot pink sparkly heart-shaped pill box, complete with two large compartments (for AM/PM medicine) and an easy chain to secure it on an inside zipper pull. Just because I am a Professional Patient doesn't mean I can't do it in style!



Thursday, August 9, 2012

Liver Biopsy Results

Technically, I received this phone call last week, but being of a superstitious nature, I waited a full week to share this with everyone because the cardiologist who read my test results was not Dr. Evil, my cardiologist. Dr. Evil was out of town, so Dr. Not-My-Cardiologist was filling in. It's not as if Dr. Not-My-Cardiologist isn't a fully qualified medical professional, he's just not on my team and therefore I am uncomfortable with him making judgment calls on my health.
So I said to TEAM RACHAEL!, "Get back to me when The Man has had a look at it. I'm not telling the internet I'm all puppies and unicorns until I hear it from him. Not that I don't trust your man there, but, let's be real: I don't trust your man there like."

I'm so happy TEAM RACHAEL! understands my use of the English language.

He did and confirmed what I had already been told: No signs of cirrhosis, not even a significant amount of fibrosis (unsure if I am using the proper term here, but essentially not a lot of scarring)

My liver is functioning the best it possibly can and is as healthy as can be.

Superb news indeed.

Now pass me the sangria.