A Bright and Shiny New Year

Time for another Patients for a Moment blog carnival! Amy from Diabetes Mine asks:

" ...in honor of the kickoff of 2013, we’ve chosen the topic of Renewals — not just prescription renewals, but any ways in which you may be starting fresh for the new year. Changing doctors? Meds? Exercise routine? Committing yourself to relaxation techniques? Drinking less coffee? Leaf turnovers? Do-overs? Making resolutions, you might say."

 
Nowhere on the Internet did I write a retrospective of 2012, as it was one of the most trying years of my life. At times, 2012 was insufferable; and then, from time to time, ineffable. All of it is too close to my heart for share-and-tell, but I will use this month's Patients for a Moment blog carnival to talk about the future I am looking toward.

I don't necessarily believe in resolutions, although there are goals I would like to meet. Among them:

1) Fitness routine to get into shape. 

2) Figuring out what precisely the rules about traveling and retaining my insurance are.

3) Making it to the Continent of Europe (I already have a rough idea)

4)  Earning more money for writing, be it through Glass of Win or freelance projects.

5) Here:

Always and forever.

What do you have in store for 2013?

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!

Patients for a Moment: More than your disease

I'm participating in the April edition of Patients for a Moment.

This is the question in full:
"Who are you without your disease or condition? What makes you more than just your disease? How have you adapted these aspects of your life so they're not completely overcome by your illnesses?"

Then the hostess goes on to list some examples - basically take away my illness and what do I have left going on my life?

The wording of the questions as I interpret it - "Who are you without your disease or condition" - means to me "Who is the person you would be without your disease or condition?"

Which is a different interpretation of what our hostess goes on to list as examples of what she means (i.e  the rest of your life BESIDES your health)

Here's the cold hard fucking truth: There isn't a single aspect of my life that is the way it is because of my heart condition. Every single little thing is happening because of these health problems.
I'm a freelance writer because I had to quit my career. I focus on writing because my health couldn't keep up with my acting. I am living at home with family because I was never able to earn enough income to move out. I never finished college because my health (ok, and my patience) couldn't keep up with the stressful work load. All of my art somehow reflects my feelings on my health, my facade, and my fears.
Every minute detail of my life is dictated by this heart condition...but so what? It is what it is and I'm going to have fun and be who I want to be, contribute as best as I can and hopefully make a bitch or two smile every now and again.

So let's break this shit down, question by question.

Who are you without your disease or condition?
- I don't know that person. She would be a stranger to me and I wouldn't recognize her.

What makes you more than just your disease?
I think it's pretty obvious considering how present I am on the internet, but maybe not to some of you so's I'm gonna list all the shit I do outside of being a Professional Patient.
- Food and Travel writer, when I can get gigs. Sometimes PR companies hit me up to cover food related events. Those are the best because it's a good time for me, content for my blog and essentially free press for the event.

- Mixed Media Artist. I only give my work to charity, but I have sold a few morbid art dolls that I've made. Usually my pieces reflect some sort of essence of my heart condition though. I'd like to do more of this but you know, the muse comes and goes.

- Novelist. Yeah, I've completed quite a number of novels and no, they're not published. I hope to self-publish them one day. I no longer have Big Publishing House dreams because that shit scares me, but if I could find a small but loyal fan base I'd be the happiest bitch in the world. I've written everything from children chapter books to adult stories.

- You all know I volunteer with Camp del Corazon so there is no need to go further into that.

- I'm pretty much the one who runs the house here since I'm at home most of the time. I try to keep things tidy and organized. Some days are better than others.

- I'm plastered all over the goddamn internet because that's all I learned how to do in life (and I've yet to repeat any of the big money I made as an idiot teenager hawking shit on eBay). I make silly YouTube videos about being a Professional Patient and about Batman. I used to host my own radio show and podcast. I tumblr about memes and macros. I got little nooks and crannies all up in this bitch.

How have you adapted these aspects of your life so they're not completely overcome by your illnesses?
Everything at one point or another will be overcome by my heart condition - even temporarily. I just have to maintain a kind of life that allows to be put on pause every now and then. I just had to learn to accept this and be all that I want to be when things are quiet with my health.


PS: Is it just me or did the Blogger "upgrade" get dumber and shittier than usual? Christ, Blogger, who do you have back there running this shit, cigar smoking chimps?

The Fears of the Chronically Ill

This is my contribution for the Patients for a Moment blog carnival, hosted by Selena of Oh my Aches and Pains! who asks: I want to hear about your fears: what they are, how you face them and what you do to overcome them.



via threadless


Well, I'm scared of driving, statues of animals, bugs that jump, oh, wait. Selena isn't asking about those fears, is she? No, she's asking about the fears that I really fear, the kind of fears that revolve around my health.

Death - The big one. It's not an uncommon fear as a whole, but the looming shadow of a scythe and a hooded figure has been a concern of mine for a number of years. It's more of a fear of premature death than anything else, but like I said, not wholly uncommon amongst even the healthiest of people.

Medical Upkeep - This is actually the fear that causes the most anxiety in my life. I can never, even for a split second, be without medical insurance in my life. Obtaining and maintaining insurance in not easy, in fact, it can be downright demeaning and stroke inducing with all of the questions, the restrictions each program puts on my life, the limitations, the rules, the paperwork, the soulless shuffling and judgment. It's pure, unadulterated hell for me. Nothing spins me into a full-blown anxiety attack like talking about how much I hate the bureaucracy part of health insurance.
What does it in for me is that I am not a temporarily ill person; I will always be "sick" on some level and I will always require insurance. Explaining this, explaining my health, my heart condition and what it "feels" like (most annoying question EVER) is like being asked to justify my existence to a firing squad. I am hopeful that many of you will never, ever have to go through this hell but for those of you who have - my deepest empathy.

Dependency - I don't know if I am a dependent person by nature, or situation. What I do know is that I have a desire to free myself from being dependent. I'm unhappy having to rely on my family for shelter and food, but this is necessary as I cannot make enough money at this point in time to support myself with rent, food, etc. My big fear with dependency is being dependent for the rest of my life. I do not want this; I do not want to live with my family forever. I want to spread my figurative wings and have my own home, my own family. I want to pay my own bills, decorate every room in my own house and be able to say I am the head of the household.

Unrealized Goals - I've always wanted a family of my own. A spouse and a gaggle of adopted kids. Living with my health, the dependency issues, the unable to make more than the bare minimum, it wells a fear so great in me I can easily cry thinking about it too much. To not achieve a family of my own, however small it may be, is something I cannot bear. Something that millions of people take for granted, and many often neglect or abuse, and I have to struggle for seems like the greater injustice than any other aspect of my life.

So, these are my fears that all relate to my health in some way or another. How do I overcome them? Well, I haven't. I just try to avoid the outcome I don't want or to figure out ways to keep living my life the way I want to and achieve as much happiness and personal success as I can.