Glass of Win

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I missed the blog carnival at Patients for a Moment but that doesn’t mean I oughtn’t take the time to contribute anyway. The question posed by Leslie of Getting Closer to Myself is: What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

To save time and ranting, I’ll bullet-point this:

1. This is not a hoax; I am not faking a single part of being ill. I’m not such a hypochondriac that all of this fatigue is in my head.

2. I would much prefer to be on my own with a full time job and regular bills to pay than living rent free with my mother. Never once think I enjoy the situation I am in.

3. Guilt is a burdensome emotion that I waste a lot of precious energy feeling. I am fortunate enough to have a supportive parent and be on certain programs that assist managing the outrageous costs of my medical upkeep, but this doesn’t mean I get my jollies being a sponge on American society. I also never forget how grateful I am for these things.

4. My health is #1. My health outweighs any awesome outing, personal financial freedom, and employment that may jeopardize or get in the way of my health. No one comes before my health.

5. Fatigue sucks and I would much rather get all dolled up and go out on the town than stay in my pajamas and Twitter.

6. When you whine about having to take a temporary pill or get your blood drawn for the first time in a decade I kind of want to slap you. Nothing personal.

7. I can see the bigger picture now. I’m lucky in that the Grand Scheme of Things has become clearer to me over the years and I have been able to finely tune the art of deducing what counts in life and what is small bikkies.

8. My choice to not drive is based on several factors of my health, not laziness or fear. I am sorry this puts a damper on our friendship, but if you make half an effort to continue our friendship I will do the same. I do not have the energy to be the only one trying, however, and this isn’t personal just a fact. Friendship is a two-way street.

9. There isn’t a day that goes by that I don’t wish all of this could be miraculously cured. I am not one of these people who has come to terms with their health issues and wouldn’t trade it for the world. Hell, I’d trade mine for a full-time job and bills to pay.

10. Despite my front, I am scared. I am always scared and I am always worried about what is around the corner for me. I use my front to scare away the fright in the hopes that maybe one day I’ll believe half of the crap I say.

11. Life means everything to me. I have absolutely no sympathy for those who abuse it. None whatsoever.

12. When I am ill, there is nothing more I want than to have company. If it’s a phone call or a house visit or a letter, I just want to know you care about me and that I am not alone.

13. You don’t know how I feel so don’t say you do.

14. If anything happens to me, like my heart decides to go into arrhythmia, please stay calm and just listen to me. Yes, I do have to go home. No, you cannot dance just one more dance. I need medical attention and you need to be a friend and help. I am typically mortified when I get sick in public so we need to work as a team.

15. Spontaneity is not my friend and I don’t appreciate it when people get huffy that I can’t just drop everything and go off.

16. No matter how many blog posts, podcasts and e-books are dedicated to the subject, I can never be that jet-setting, globe-trekking Jill-of-all-Trades entrepreneur that all of the THINK POSITIVE! blog girls want their readers to be. That kind of reality isn’t in my cards.

17. I get jealous. I feel resentment. I get angry. It will pass. It always does.

18. I have been living with this my entire life. There is never a day when this will all suddenly go away or be cured.

19. Know that however much snark I throw out into the world, however I may bitch and complain, I am grateful for everything I have and accomplished. Life is grand and I am a big fan of it.

Dear Baby Doctors,
This is an open letter to all of you med students, interns, and residents out there who are training to become real, full-fledged doctors; specifically those that will be dealing with patients living with a chronic illness. Like me. *grin* Think of this letter as a guide, as helpful tips and advice from the other side of the stethoscope.

1) Check your ego at the door
I know that House is all the rage on the boob tube, and don’t get me wrong, I love me some Hugh Laurie but if you think you can get away with treating a patient like Gregory House treats his, think again. Grumpy, in-your-face, Vicodin popping, egomaniac doctors make for great television but a poor doctor IRL.

2) Newsflash: You are not God
Guess what? You are, in all likelihood, not going to cure me. Oh, sure, you’ll probably be able to patch me up and get me to my next few birthdays – and trust me, I will thank you for it! – but as far as curing me, or most of my chronic illness friends? No. It’s best that you learn this now and get used to the idea because I don’t want you to beat yourself up later on. You do tremendous work and it isn’t fair to anyone, especially yourselves, when you cannot meet unattainable expectations. It isn’t about fixing us; it’s about treatment and communication. If, by chance, you happen to sneeze into some petri dish and cure cancer or have an epiphany at 3:41 AM about how to rewire all of my innards, great. But don’t hold your breath.

3) I want to like you, but I can’t (initially)
I’ve had a rough time dealing with med students in my childhood. For years I was their guinea pig. I’m meeting you with a chip on my shoulder, a sour attitude and the stink-eye. I’m gonna eye you up and down gangsta style. All of this will be within the first thirty seconds while your attending (my doc) explains the extra body (that’s you) in the room. If you follow the warm meet and greet as advised, though, my chip will crumble, my attitude will brighten and my eyes with gleam with welcome.

4) You are more afraid of me than I am of you
Just a fact. Doesn’t have anything to do with you personally, merely that I am used to this dog and pony show.

5) It’s all about relating
Frankly, I’m not impressed by your clean white coat with your name embroidered on it or the fact that your handwriting is on par with the Manson family, or how many meds you can potentially prescribe me. What will impress me is your knowledge of Harry Potter or the latest season of True Blood. You’ll be my BFF then, bb.

6) Know Thyself
I know that you’re all learned and stuff, but your chronic illness patient lives in their body 24/7 and some, like myself, have been living with their chronic illness since birth. That is a substantial amount of time to get to know ones body and become instinctual when shit hits the fan. It is vital for you to disregard all of that old school mumbo jumbo your hard-ass professor said when s/he told you that your patient knows dick. It is your position to team up with your patient, your NP and anyone else overseeing your patient and establish open, honest communication that includes you listening to what they are telling you about their body and you using all of that book learnin’ to put the pieces of the puzzle together. Together, this combo will allow you to you give your patient the best possible treatment, which turns you into your life-saving alter-ego, SUPER DOCTOR! You won’t have a cape or anything, but your awesome powers of communication, trust and honesty will endear your patients to you. Who knows, you may even get to save some lives along the way.

7) Warning: patient bites
My biggest beef with med students is the robotic way in which they have treated me in the past; like some lifeless, nameless specimen that was there right to poke and prod as they saw fit. Now? I bite back, so I as I’ve suggested before, greet your observation patient with a warm smile, a friendly handshake and some small talk. We’ll not only love you for it; we’ll remember your name and may even keep an eye/ear out for where you go. If you stick around the same hospital we attend, hey, we might just want to put you on our team. Isn’t that something?

Well, I hope you’re not too insulted (let’s face it; this entire post is vengeance for all of those times when some smug 25 year old put the cold-ass end of a stethoscope against my skin and hissed at me when I cringed) and I hope, despite my brass, you learned something new (other than you never, ever want me for a patient). Remember: It’s all about mutual respect, open communication, and knowing what’s going on in the zany life of Sookie Stackhouse!

And if you are insulted…lighten up, it’s my blog. Be thankful you haven’t had your chest cavity sawed open four times and just watch this video of baby animals:

By the way: I’m totally available for in-person speeches about building healthy, sustainable doctor-patient relationships, emphasis on chronic illness patients!

How to deal with the medical establishment is the topic proposed for the current ChronicBabe Blog Carnival.

Annie blogged about health care; I don’t think I am emotionally or psychologically prepared to talk about health care right now. Going through what I went through to obtain health care, what I go through to maintain it, and what I sacrifice in my life to keep it has made me develop some severe anxiety. So not ready to blog about that. Instead, I’ll give my profound and sage advice on dealing with New Doctors, Baby Doctors and Hospital Stays.

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HOW I DEAL WITH…

New Doctors
Throughout my life thus far I have had eight (including my current) cardiologists. I’ve always had a chip on my shoulder in regards to meeting new doctors; my bravado is what I use to size up the new white coat in my life and I see who will take my crap, who won’t and who will dish it back at me.
This is an attitude I have carefully cultivated over the course of my life because it is the only way I can push the fear aside and let things be all right. My humor is my shield against the cruel realities of my health and I use it generously because the alternative is to hide under the covers and cry. That is not a long-term answer. Being a borderline ass is something we can all deal with, though.

Remember: Like many a-thing in the wild, doctors are more scared of you than you are of them. Look them in the eye, give them a firm shake of your hand and be vocal, open and honest about absolutely everything in your life, regardless if it pertains to your health or not. They need to sniff you out and realize you are a creature to be respected as well!

Baby Doctors
The only people who I never mouthed off to as a kid were the student doctors – those pesky little shits who, without a friendly “Hi, how are you today, little girl whose name I can’t bother to remember? Do you mind if I listen to your heart?”, would just come at me with their cold stethoscope and have a go at listening to my unique heart.

These people needed a slap of respectable bedside manner lessons and by the time I reached my late teens, I wasn’t having it anymore. If any of them came at me with so much as a flashlight I held up my hand and made them introduce themselves to me, shake my hand and ask my permission to manhandle me. Then we’ll get along real nice.

Hospital Stays
- Label everything you own and send what you can home. Tie a string around your wrist and the drawer you keep your belongings in so if some snoopy prick decides to rummage through your goods you can catch them in the act (I once had a pair of PJs and a book about the Poky Little Puppy stolen. I am still bitter about it twenty years later)

- As soon as you are admitted, demand to see a menu for the next day’s meals and fill it out as soon as possible. TRUST ME; you’re going to get the left overs of a hard boiled egg, prune juice and stale, dry wheat toast otherwise.

- Always go for the green Jell-O

- Never be afraid to just say NO to student nurses who want to try and take your blood.

- Always ask if the Super Nintendo or whatever game system they have lying around can be wheeled in to your room and hooked up.

- Always bring the essentials from home: Toothbrush, toothpaste, deodorant, hair ties and hair brush. You will feel less gross.

- If you’re too cold, ask to have a heated blanket…or three.

- If your room has a dry erase board, leave little messages of appreciation to your nurse. Buttering her up can have massive bonus points, especially when your fighting your roommate for control of the TV.

- Always take a souvenir to remind you of your stay. Here’s mine from last year’s heart catheter:

This is how I deal with the medical establishment; with irreverence and petty larceny.

I am beginning a new series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed. Don’t be shy, we’re all in this together.

Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

ANSWER: Daria Stancikas. 17. Full time student. My defect is Corrected L-Transposition with Pulmonary Stenosis. (meaning: ventricles backwards, and closing off of the pulmonary artery) I also had a VSD at birth but with my heart CATH at three years of age we found that the VSD had closed small enough on its own.

Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

ANSWER: I have been asymptomatic since birth. I’ve been lucky enough to get this far without any surgery’s.

Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

ANSWER: My parents kept me very unsocial and protected my first three years of life so I could stay healthy and not get sick. But now there more free.

Question: How did your health issues affect your school life and your social life, as a kid and teen?

ANSWER: I was always embarrassed when I would have to wear a 24hour Holter monitor, but I have been really blessed and not limited in activities.

Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)

ANSWER: No, this is where I’m super blessed and have no limitations. My parents and doctor call me a “walking miracle”

Question: What was one of the most obnoxious questions you’ve been asked or assumptions you’ve faced in regards to your heart health?

ANSWER: I always get asked “Are things harder for you?” and “Does that mean your going to die sooner?” and sometimes after explaining the whole thing people say that it is cool. haha

Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?

ANSWER: Actually, when I was younger it was easier for me because I wasn’t as alert to what is going on in my heart. Now its more difficult because I understand how scary and real it really is now.

Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

ANSWER: Sometimes if I’m really sick I get worried about how it could effect me, but for the most part My system is well and I usually fight off a cough or cold or flu whenever it comes around.

Question: To date, what has been the most frightening moment in regards to your health?

ANSWER: My most frightening moment was when my doctor was talking about surgery and was almost ready to do it. Thankfully they didn’t do the surgery. Also, I remember very little of my last heart catheter, because I was 8, but what I do remember was definitely scary.

Question: What was your attitude about your heart health like when you were a kid, and then as a teen?

ANSWER: When I was a kid, my attitude was really no big deal. Like I didn’t care that I had this defect. Now that I’m older and understand, I do feel scared at times and worry. Sometimes in sports I feel like maybe if I didn’t have this defect I could be better. But God has a purpose for me and wanted me to have this defect, and of everyone in my family, I’m glad I got landed with it instead of one of them.

Question: What are your hobbies and passions?

ANSWER: I love being with friends and going where ever we want. (beach, movies, sleepovers) I also play water polo and swim.

Question: Having heart issues is what is known as an “invisible disability” Have you had any instances when people just didn’t get it and gave you attitude because they couldn’t “see” your heart issues?

ANSWER: Not really, Sometimes people think its a joke when I say it. But after explaining the whole thing and showing my Medic Alert bracelet they believe me.

Question: What has been the toughest part about living with heart health issues?

ANSWER: The hardest part for me is just when I think about the future and how this will effect me later, will I need a surgery? Will I not live as long of a life now? Just stuff like that; that worries me.

Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?

ANSWER: Although i don’t remember this, my mom says when I went into one of my heart catheter’s at age 3, I was telling everyone “knock knock jokes”. Also when I was younger and had my regular heart check up my mom told me the EKG was stickers because the leads stick to you & the electrocardiogram was called “the lollipop on my chest” because it was sticky gel they used to move the transducer.

Question: You have been one of the fortunate heart kids who have grown up with friends who also share the CHD commonality. How has these friendships helped you, and what makes them different (if at all) from your friendships with people w/out CHD?

ANSWER: I met Megan my second year at CDC (Camp del Corazon) and we have been friends for 6 years now. we always try to find time to hangout and I feel like she understands me and I understand here since we both have heart problems. I love knowing that I’m not the only one who has to deal with this. It’s different talking to her about it other then my friends without CHD because they get confused when I tell them what I have and it feels like they don’t understand it as much as someone with a heart problem would.

Thank you, Dar, for sharing your story with us!

If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.

Background: I first met Dar when she was a fourteen year old camper at Camp del Corazon, a non-profit I volunteer with. Dar and her group of friends quickly became “my” kids, a group I look forward to seeing each year. Daria graduated camp last summer and I am eagerly anticipating her return in a few years – only this time as a counselor!

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Today is my first Weekly Toast without the self-imposed restriction of keeping it on a Wednesday. I feel that a Weekly Toast is necessary to still recognize and spread some positivity around, be it something completely personal to me or a bit of frivolity I want to share. Today, it is the former.
Today is my 28th birthday and I want to toast everyone who has made my life’s journey possible.

champagne truffles purchased in Ireland

I can’t speak for everyone with a chronic illness, but it has been my experience that those of us who have lived with a heightened threat of death lurking just out of our shadow that birthdays, and particularly, getting older, is something never to mourn but always celebrate.

That I am able to be here, sitting on the computer typing this on my 28th birthday is a miracle in and of itself. Below is my list of those people I’d like to give my Weekly Toast to as they all have contributed in some manner, shape or way in making sure I am able to celebrate this day:

To my parents who gave me the spark of life. Dad, thanks for always being able to talk me off a ledge. Mom, thanks for everything.

To my Grandmother for being my #1 cheerleader and sharing her birthday parties with me for 24 years. She would have been celebrating her 94th today.

To the young doctor in his fellowship that recognized something was not right with infant me and saved me from old school medical fallacy.

To Dr. Jue, my first cardiologist, who gave me my first reboot on life (sorry I totally kicked you in the chest that one time.)

To my brother, for being the funniest and most infuriating, loving brother ever.

To Dr. Saleem, my favorite childhood cardiologist, who didn’t take any of my crap and made me work for his respect.

To KD, who is in all definition of the words, my true best friend.

To KD’s parents, for loving me like a fifth daughter – and to KD’s dad in particular for always making sure I took my medicine on time.

To Mrs. Arbogast & Mr. Ryan – my 3rd and 4th grade teachers, for making us read all of those wonderful, wonderful books and giving me my first taste of writing. Mr. Ryan, thank you for recognizing my first struggles with math and making me stay in at recess to work on fractions. If more teachers had been like you, perhaps I would have passed algebra.

To all of my childhood bullies, you have provided my creative force with an endless supply of nemesis for all of my protagonists.

To my cat, Mr. Destiny, for providing me with 16+ years of unconditional love and being exactly what author Philip Pullman was able to capture between humans & daemons in His Dark Materials.

To my sister for adopting me and stepping in just when I needed a big sister in my life.

To Judy, my mentor, for listening to me prattle on for years about people who don’t exist and giving me words of encouragement.

To Annie, the one friend I took away from the wreckage of Junior High.

To South Pasadena, for being the quaint little tree-lined town you are and giving me a fresh start and fabulous new friends whom I still love and spend much of my time with.

To the Cruft family, for giving me the biggest opportunity of my life and continuing to let me share a bit of your family.

To TEAM RACHAEL!, for knowing there is no “i” in T-E-A-M but in P-I-E!

To Camp del Corazon, for giving me a community, a purpose and teaching me it’s OK to be emotionally vulnerable and make friends of my heart peers.

To all of the Bat-fiends who gave me the courage to start this website and pursue writing in the public eye.

To everyone at The Place Media Group for giving me a tremendous opportunity in a field I had only dared to dream about.

And to all of my readers out there right now, reading this. You are a true dream come true.

I am beginning a new series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed. Don’t be shy, we’re all in this together.

Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

ANSWER: Carissa Aim’ee Carmichael, 28, Educational Assistant at Oak Grove Center and a child care worker for New Vision Autism Center and I’m also a student. I was born with TGA Transposition of the Great Arteries but at 19 (2001), I had a heart transplant

Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

ANSWER: At 3 months old, I had my first heart surgery-Open heart senning procedure to correct my congenital defect. It was successful for the first 15 years of my life. At 15, I was put on beta blockers and at 17, I had a pacemaker/defibrillator put in. 5 months later it went off (shocked me back into rhythm from tachycardia) and I was put on the transplant list.

Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

ANSWER: As a kid, I knew I was different (scar) but I was always told to do what I could. I had P.E. and stuff but I just went at my own pace. I guess I was spoiled because my parents were told when I was born that they knew my heart surgery was not going to be the end all surgery and that I may die someday. I didn’t know that. I thought it was cool that I got a year book every year and my class ring early. I got whatever I wanted…yes I was spoiled

Question: How did your health issues affect your school life and your social life, as a kid and teen?

ANSWER: Well, I had no social life. I don’t know if it’s just me or having a heart problem but I was a loner and was singled out in p.e. and later waved from p.e. in junior high to high school. So people didn’t like me because they didn’t understand why I didn’t have to run or whatever…I was out a lot of school in high school. By 15 my heart was giving out so I was more tired and didn’t do too many active things…malls, movies…

Question: How did your heart health affect the relationship with your siblings (if you have any)?

ANSWER: It made my sister (2 years younger) become independent early on. My parents had to take me to Children’s hospital here in Cali when we lived in Hawaii…My sister stayed there and went to school. She was 12. But she is also someone I admire. She took care of me and even though she looked out for me I still wanted to be the big sister but she took over that role for awhile. She’s my hero, when I got my transplant she was about 16ish and all her friends were getting drivers licenses and she went around telling them how important it was to be an organ donor. I was also jealous of her a lot because she was able to go out, party, go to concerts…and after high school she went to a four year college far away… I went to community college down the street.

Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)

ANSWER: No, I have a new lease on life and now I have no limitations (although contact sports are out which works for me!). I do take meds every day though.

Question: What was one of the most obnoxious questions you’ve been asked or assumptions you’ve faced in regards to your heart health?

ANSWER: After my transplant I got that “do you have their cravings? Do you still have your feelings? Is anything different in regards to the person’s heart I got?” it’s crazy. Plus before that I would use a wheelchair at Disneyland or other places, the mall and people always stared at my legs…that was annoying.

Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?

ANSWER: Easier because I know enough about my own issues and medical issues so that I can explain it to people better and it doesn’t bother me to talk about it or I have no problem talking about it or showing my scar (wearing v-necks, bikinis). As a kid I don’t think it bothered me too much either….I didn’t know anything else.

Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

ANSWER: I never stressed. I felt everyone around me did. My family is the best. My mom was the best and always will be she was there for me in every way possible. She lived with me after UCLA (hospital) in a hotel, she and my dad and sis swapped visiting me every time I was in the hospital. My other relatives that were close would visit or I got lots of phone calls. I was in the local paper and got many cards from my community from people I don’t know but were much appreciated.

Question: To date, what has been the most frightening moment in regards to your health?

ANSWER: Maybe when It really hit me that I was going to need a heart transplant. I got scared and cried with my parents int their bed. But then I accepted it and after that I knew it was in God’s hands and I knew I would be OK.

Question: What was your attitude about your heart health like when you were a kid, and then as a teen?

ANSWER: As a kid- not a big deal. Teen- a little more insecure because I had no body strength and couldn’t keep up. I got tired easily. But I was never depressed or anything; always outgoing, hyper (still) and happy.

Question: What are your hobbies and passions?

ANSWER: I love reading and watching romantic comedies. My biggest passion is working with children with autism. I am drawn to children with special needs and feel I can make a difference. I feel like I have a gift. I work with kids now with severe autism and it has its challenges but I love it. I am also in school getting my masters/credential in special education.

Question: Having heart issues is what is known as an “invisible disability” Have you had any instances when people just didn’t get it and gave you attitude because they couldn’t “see” your heart issues?

ANSWER: I have a permanent handicap pass for my car and people have given me strange looks when I use it and I even got a post it on my window once from someone saying I was misusing it!

Question: What has been the toughest part about living with heart health issues?

ANSWER: Well, as of recently- I have decided to get my tubes tied. It has been the hardest decision…I always wanted kids but I look at it like God gave me a second chance at life and if that means having no children of my own he gave me the gift of finishing my education to become an amazing teacher for special needs kids. I decided not to have kids because it would be a complicated/stressful pregnancy. The child may absorb my meds, I could reject and/or the child could be born with issues due to my medications.

Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?

ANSWER: I blame my scar on that fact that I have no cleavage. When I wear the heart monitor I called it ‘being wired for sound’.

Question: What do you know about the man whose heart is now yours? Have you ever made contact with his family?

ANSWER: I know his name was/is Albert, he was in his mid 40s and very healthy (car accident is my gut feeling) his
sister sent a mass letter to me and others who received his organs.I think like 3-4 others. Just said he took care of his father, loved to cook and was athletic. I think I got one more letter but it’s been a long time. I gave her my email but have not received word in over 8 years.

Question: How has knowing other people with heart health issues impacted your life?

ANSWER: Makes me feel not so alone. I recently ran into some lady with a scar and had to stop her and ask her what she had. I’m so blatant about it. It’s not everyday you see someone else with a scar or zipper. It makes me feel exhilarated and excited to meet others and share stories. That is what I loved most about camp (where Carissa & I met); sharing stories and learning of other heart problems and how other deal with it. We all seem to have a special bond that no one else can understand.

Thank you, Carissa, for sharing your story with us!

If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.

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As most of you know by now, I sport a congenital heart defect (layman terms: my heart is f*ed up). Traveling with such a delicate (read: moody) ticker is not unlike a circus act sometimes. One minute I am the ringmaster, totally in command of myself and every bit of chaos around me and everything is grand, ready for me to conquer. The next minute I am doing a death-defying balancing act with nary a net under me. And I am always juggling.

When I was a teenager, I traveled alone to and from the coasts to visit my best friend. Knowing her parents were just as vigilant caregivers as herself, my mom felt comfortable getting there to and fro by my lonesome. Then, in 2003, when I was 21, I decided to dive head first into an Australian adventure. I wanted a one-way ticket, a beat up writing journal and five pairs of shoes ~ I was going to write the Great By-An-American-But-Pretending-To-Be-Exiled-In-The-Raw-Untamed-Beauty-Of-Australia novel and THERE WAS NO STOPPING ME! Except that I was back in two weeks, sick from cigarette smoke inhalation to the point that I had to be escorted in a wheelchair to my mom from the plane. Thank you, good people at Quantas.

Sydney was a learning lesson; an expensive learning lesson but one that put a six and half year gap between myself and the next time I flew international, which as many of you know I just did, having returned from Ireland exactly one week ago. I was smarter this time, and though this trip did not come without some challenges because I don’t control every human being on this planet (yet), here is my advice when traveling with my particular chronic illness:

1. Aisle Seat – Having been on blood thinners since I was 20, I always make sure I grab the aisle seat so I can get up and walk around the cabin without disrupting too many people. It’s always best to give the airline staff a heads up, too, in case they keep looking at you funny.

2. Count Meds – I count my medicine with a calendar and make sure I am going to have enough for the duration I am gone, plus a few days more in case any unforseen happenstance occurs (like a freakin’ volcano).

3. Calendar Check – During a certain time of the month, my heart is more apt to be behaving wonky due to a hormone change. I try to either avoid traveling on these dates or at least plan low-key activities. This trip I came home during this time and the last 24 hours I spent in Ireland had a bit of a figurative raincloud over it because I had to be extra vigilant about my activity. No caffeine, no alcohol, and my emergency pill close at hand.

4. Travel Buddy – If I am traveling to a destination where I have no one to be visiting, I make sure to have a travel buddy. With both Sydney and Ireland, I threatened to go solo but breathed a deep sigh of relief when I was finally able to secure a trusted friend to come with me. Those are the two key words, by the way: Trusted. Friend. While I love all of my friends dearly, there is only a handful of them I would trust not flip the fuck out should something dire happen to me. Not just that, but understand that I can’t always stay out late or drink as heavily as others or go without breakfast. These are what you call true friends and they make the best of any situation and will hang out watching the Graham Norton Show rather than try to bully you to go to the pub.

5. Official Paperwork – I made TEAM RACHAEL! (my medical team) send me as much updated paperwork as possible, plus a single page overview of my heart condition, listing my surgeries, Team Rachael contact information, medicines, and official diagnosis in case a) any security official wanted to throw down with me for packin’ a pharmacy in my purse or gave me a stink eye about needing a pat down due to my pacemaker, or b) I had to make an unscheduled trip to any medical facility. The official one page document is printed out and carried at all times,while the others are put on a travel USB specifically for medical information. I urge everyone with a chronic illness to invest in a travel USB and to keep it updated with medical paperwork to take with them whenever they travel, even if they are visiting relatives or good friends.

6. Lay of the Land – I had to cancel our initial Cork accommodations because I was unaware how steep & hilly Cork city is. When a Cork local writes a travel book and warns the readers how steep a particular street is, though, it’s time to look elsewhere. Thankfully, I found a self-serviced apartment with a special rate in the heart of it all and not on too steep of an incline that I couldn’t trudge home every evening.

7. Not a Backpacker – I admire backpackers, but backpacker I am not. Camping Steffie and I may have done, but backpackers, again, we are not. It is important to tell myself that I am not a backpacker, in no way am I to feel guilty for being unable to wing & rough it the whole vacation through. It is also important to really emphasize this to anyone I may be meeting up with or relying on for accommodation so they understand I am not walking against the wind here.

8. Weather – I’m anemic, and even though Ireland is at its warmest this time of the year, the nights are still chilly for me, especially when we camped. Always being prepared for any type of weather is essential as is growing a thick skin against the snickers for dragging a large, comfy coat (that kept me warm during those pivotal three nights of CHILL.)

9. Self-Limiting – I’ve always been good about self-limiting, starting from childhood, but it does become a challenge when I’m out & about and having fun, wanting to do EVERYTHING! Every single moment there is something awesome to be doing, but that doesn’t necessarily mean I have the energy for it. It’s always vital to listen to my body, but even doubly so when I am on vacation and away from home. Pushing myself beyond my limits one night may mean missing out on planned, pre-paid for awesome stuff the next day so it’s better to just turn in early, make some pan-grilled Tandoori chicken and veg in the serviced apartment and call it a night early on.

10. Eating Well – While I knew I would be dining at some of the finest establishments in all of Ireland, what of the in-between meals, especially while we’re on the go? Grab a piece of fruit, NOT THE PASTRY, and a big bottle of water that can be recycled over & over (as the tap water their isn’t poison like it is here). Steffie always made sure that my stubborn picky eating habits did not interfere with the need for nutrition. She would have shoved that egg sandwich down my throat had I not finally obliged, and the last words I’d have heard would have been, “YOU NEED PROTEIN, DAMN IT!”

11. Packing Light – I’m still learning this one, but I’ve come a LONG way from five pairs of shoes and a suitcase heavier than I am. It was my bright idea this go-around to try and only have carry-on luggage. One HEAVE-HO of my bag after packing it though was enough for Steffie and I to check those suckers in. Oh, they were killer but we managed (with a lot of stopping) and I often forget just how many staircases the old world is plagued with. PLAGUED, I tell you. OK, from here on out: Travel light, with rolly-bag! And don’t forget to squirrel away the money to ship stuff home when you go overboard on clothes shopping.

12. Avoidance – I have had enough cigarette asshattery incidents in my life to make me feel justified in thinking very extremist thoughts about smoking and smokers. Smoking is a touchy subject for everyone involved so I’ll just say this: I take extreme precautions to never wind up in a small, enclosed proximity to smokers. Sometimes it doesn’t work out and those tricky bastards still manage to fuck up my day (as they did on this vacation, too). As a guest in a country not my own, I make it my responsibility to maneuver out of the path of cigarette smoke as much as I can. I rarely complain to smokers directly, unless they are encroaching on my personal, designated, I-paid-for-it and you’re violating laws space. I make sure to ALWAYS have such a space.

13. Clear the Calendar – Upon returning home, I made sure that I did not have a lot of obligations that was going to drive my energy level into the ground. I know vacation time is usually meant for R&R, but it is a different kind and I can say with zero exaggeration that I never worked out as much in my whole adult life as I did on this recent trip. I was up and walking up and down, all over, lugging baggage, going this way and that way. That exertion combined with airplane illness means a lot of recuperation when I come home. Make sure to square away time for it!

So these are my rules for Traveling with a Chronic Illness. I’m sure they will be added to and revamped as my travels grow. Do you have rules for traveling with a health condition you need to be mindful of?

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I recently discovered two awesome blogs – It’s Time to Get Over How Fragile You Are and Chronic Babe. Both have inspired me to open up a bit more about life with a congenital heart defect. A regular feature on Chronic Babe is the Blog Carnival – a theme blog roundup link party of sorts. I missed the official carnival of the previous topic, Parenting with a Chronic Illness, but I’d like to touch on it nonetheless. I thought about starting with an easier topic, but honestly, there isn’t one closer to my mind frame at this point in my life then motherhood.

Before I dive head first I do feel it is necessary to say I have strong opinions and this is my website and my blog that I paid for. Be respectful if you feel the need to voice an opposing view.

When I was a child my only one true goal in life was to be a mom. I loved playing mommy – with my toys, with my friends, with my pets, I am a natural born mother-type. I love children and I took it upon myself from toddler-hood onward to take care of all of the children who came into my life. Luckily, for whatever reason, my first cardiologist recognized this Mommy head space I was and told me from an early age that I would more than likely have to adopt because my heart would not be able to handle having a baby on my own.
Fortunate for me as well, my first preschool was run out of a home of a woman who not only adopted her children but took in foster kids as well so I had very early exposure to the first hand experience of adoption.

As I grew older and into my teens, however, the idea of having my own children got stuck in my head and childbirth was – for whatever insane reason – attractive to me. I was incredibly depressed that I couldn’t, or rather shouldn’t, have my own and when circumstances I’m not obliged to go into put me in a situation where I had to advise a young friend of mine to terminate a very doomed pregnancy it damn near broke my heart.

I tried to compensate it by working with children. I was a nanny, a day care provider and after school worker. I pitched in at an elementary school library and majored in child development. All that gave me was a severe beating to my immune system and a deep hatred for parents wrought with entitlement issues.

My favorite mom/baby pair. credit

As I matured I realized I needed to face harsh realities though. Children, babies in particular, require energy I do not think I possess. I came to the conclusion that the health of any potential offspring is not something I want to risk along with my own personal health. The risks are too great and it is my personal opinion that it is irresponsible to pass on poisonous genes like mine. So I grew back into the idea of adoption and became very comfortable with my decision. So much so that I’m now kind of an anti-procreation-let’s-take-care-of-the-unwanted-abandoned-kids-before-adding-more-to-the-world warrior (but don’t worry, I’m a total hypocrite and I’ll be the first to gush over a girl once she tells me she is expecting). I found out I LOVE teens and preteens (My inner child is perpetually 12.5) and adoption is back on the TO DO list. As is a tubal litigation.

However, now that I am at that PRIMO BABY MAKING AGE my biological clock is not only ticking, it’s screaming it’s fucking head off in my ear 24/7 telling me to make with the procreation and keep my pathetic genetics in the pool. I have to remind myself daily – DAILY – that it is perfectly normal, strictly biological for me to be going through this. Many women do. I envy those that don’t have this shrieking throw-back to primitive mating rituals 101 knocking at their brain every hour of the day, and I admire those women who brave the stigma of having a child-free life. I tip my hat to you.

I want children. I want them badly. I want a house filled with homework, Spongebob Squarepants, muffled teenage giggles, Judy Blume books and impatient voices shouting, “MOM! When’s dinner? I’m starving!”
I don’t care where they come from – India, USA, Russia, South America, China – I don’t care their ages. I love them all and if they need a mom, I’m happy to apply for the position. Will I ever get to? Will I have the opportunity? Will I find a partner who wants the same things out of life and will put in the extra effort when my illness gets in the way? Will I be mercilessly judged and rejected based on my heart health alone? These are my worries, my questions that do not yet have answers.

It gives me joy and pain to see my friends have children, to have those random five second conversations with a child as they quickly breeze in and out of my life, to see mothers with babies tightly swaddled to their chest as they browse at the Farmer’s Market.

I often daydream about the type of mother I will be…I know myself well enough now. I would be the kind of mom…

…who checks in on her kids at night to make sure they’re sleeping peacefully.
…who wants her home to be ground zero for the friends to hang out and feel they have a second home at.
…who can become a hardass and take a screaming teenager when their privileges are revoked for poor grades.
…who reads to her children every night, from simple Bernstein Bears to Katherine Paterson and Meg Cabot.
…who has a panic attack for every minute past curfew that her child is not safely home.

Motherhood is something I always wanted and still want. Is it in my future? Not immediately, but I certainly hope it’s on its way.

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QUESTION: How do you feel about becoming a parent?

We’re back at this game, are we now? Waking me up around 6:00am with those obnoxious knocks on my chest, knock knock knock, like a timid religious solicitor? You don’t know if you want to slow down or go for the gold and kick into high gear. I don’t which is more annoying and troublesome – having a full-blown tachycardia episode that sends me to the ER, or this slapdash flutters that make me put my life on hold while you decide what you’re going to do. I don’t know what I did to deserve this half-assed attempt at rebellion. I took all of my medication, I’ve been getting enough sleep, I’ve have not had much caffeine or alcohol in the last week, and my activity level has been it’s usual moderate-low state.

You have no reason to complain. Do you just want the attention? I think so. I think you just want to be the center of attention because a lot of good things have been happening and are coming up and you have been feeling neglected. Mom even took the day off of work because you’re so wishy-washy and she doesn’t know if you’re going to pitch a tantrum or what. God, you are such a drama queen. By the way, I don’t appreciate the headaches, either. I don’t know if they’re necessarily related, but as you came shortly after I started to receive bad headaches, I can’t help but be a little suspicious.

We have a birthday party tomorrow, heart. A play-date with fellow heart patients, so you’ll be amongst friends…You know this! We’re not going to go if you keep acting like this, though. You keep behaving like this and we’re staying right here at home, young lady, and going absolutely nowhere. Is that what you want? You want to be a wounded, self-pitying recluse for the rest of your life? I don’t think so.

I’ll do whatever I can within my power to make you happy and go back to normal. Let’s just try to do our best to stay out of the emergency room, okay? Promise? All right, now pull yourself together and let’s get better!