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!

Traveling, Bucket Lists and You

Bucket Lists came up in a recent topic on my CHD support group and many of the members listed travel being the top desire. Then another topic was created, asking about traveling and the original poster asked us where we'd all been. Despite seeing "travel" as a bucket list item so many members replied with many, MANY places they had traveled to - shaming my own travels in variety.

I've written a pretty damn good post about travelling already but just recently I got it into my head to really pull out the stops for my upcoming 30th birthday and throw together a getaway vacation. I made a new friend online who invited me to her home outside of Cork City Ireland (aka my favorite place in the world) and another couple of friends in the city center, bought on a plane ticket on Monday, got my pacemaker taken care of on Tuesday and am now just tying up loose ends so I have no impending deadlines to worry about during my travels.


I'm going to add on to my list from my old post another lesson I've learned since 2010:

PACEMAKER - This time I was smart and got my sleep mode taken off of my pacemaker because I experienced some difficulties getting my energy stability up when I was in Ireland, a country that is 8 hours ahead of me. TEAM RACHAEL! was not thrilled with my last-minute whirlwind of planning, but they made due because I am a rockstar with VIP status.


Money is not something I freely talk about, but I would like to encourage those of you who have either yet to venture away from home or those of you looking to add more stamps to your passport to consider the following resources for budget traveling:

http://www.helpx.net - This is the website that started this getaway venture of mine. A fellow blogger, Corinne of Frock and Roll, mentioned helpx.net on her blog and set my plans in motion. It is a wonderful resource for people looking to really immerse themselves with the locals. It works as such: someone needs help with something, you provide such help, they give you room/board. Help can be anything from chores around the house, specific projects like painting/roofing/mechanics/gardening, pitching in with children and/or animals, language exchange or what have you. People rarely ask for more than 4 hours of the day, leaving you plenty of time to soak in the scenery and take day trips. Lots of people are flexible too so if you want to take off for a few days in exchange for a couple of traditional 8 hour days you could probably negotiate. Everything is possible.

http://www.couchsurfing.org - Meet locals while you crash on their couch (or spare room or whatever they have to offer) This is usually for short-term stays, although if you and your host really hit it off who knows. Very good to use to make friends as you make your way through a country or an entire continent. Just be sure to read everyone's profile to make sure you'd make a great match!

Many people living with a chronic illness might be frightened to travel - be it fear induced by a parent, medical professional or their own volition - and don't get me wrong, having an healthy dose of caution is just fine - but you cannot let fear cripple you and keep you from traveling.

As many of you know, I was godawful fucking ill not 3 months ago. I could not even conceive of getting on a plane to go 5,000 miles away from my bed - especially alone! 3 or 4 weeks ago my friend Corrine posted about helpx and now here I am - packing my bags getting ready for another adventure in Ireland, which I visited in 2010. Now, would I have gone to a county I'd never been to previously for my first helpx/couchsurfing experience so quickly after being ill? Maybe, but not likely unless I had a travel buddy or friends at the destination.
The fact is I wanted to do something for me - not just for my 30th birthday but to rejoice in another victory against poor health. It tried to get me but I kicked its ass once again. Time for a fucking pint.

As soon as you find yourself with time on your hands to seize the day, SEIZE IT. Even if, no - especially if you get caught in a whirlwind of "other things" you need to force yourself to make time to travel. If it is that important to you, you will put in the effort. I'll tell you one thing being disabled as afforded me: time. Precious time that not many other people possess because they're working full-time or dealing with family. I've not yet a family of my own to be responsible for - so the perfect time for me to runaway and have adventures is now. Now is my time.


It's no use looking over my shoulder and living with the regret that I did not travel more in my youth - I made a choice to try my best to carve out a career for myself and hey, I learned some things along the way. Time to look forward, pack my bags and take a giant step toward adventure.