The power of free food and booze compels me!

My stomach was healing well last week. I had a few off days, Thursday in particular, but I chocked it up to walking a lot the day before and perhaps pushing myself too far too soon. However, I've grown steadily worse, or worse-ish and nothing seems to be working out for me. It's not pain, per say - just discomfort. Constant discomfort in my lower abdomen. The left side in particular hurts more, a certain area being hard as a rock. I'm unsure what the hell is going on, but I do know one thing: I'll be damned if I am going to miss another function over this bullshit.

It's not so bad that I need to race to the ER again, so I'll tide myself over the weekend and give him a ring on Monday.

The discomfort is hindering my ability to eat properly and get shit accomplished. Everything takes double the amount of time it ought to, and I have a serious work-related deadline. I wanted so very badly to have a guest blog done in time for a friend who went through a major surgery and I haven't even been able to finish that :( It makes me feel like a failure when I can't deliver on something I had ages to get done.

Anyway. I want these stomach issues resolved. Summer is nearly here and I'd like to make some plans - be it traveling or earning some cash to travel. Let's all hope for the best.

Why I Have Been Quiet

Hello.
Yes, atrocious upkeep. My apologies. I always mean to get back to this blog, but something always holds me back. Whether it is forgetfulness (a good 40% of why I do not post), laziness (I'd say another 40%), or fearfulness (the remaining 20%), there really is no good excuse.

The fearfulness may come as a shock to some of you, perhaps. I do hold quite the illusion of being incomparable to the perils of fear and insecurities when it comes to discussing my health. Truthfully, the visit to Philadelphia and my tour of the Children's Hospital of Philly (not coincidentally when this blog fell silent) really shook me up. I have made several attempts to adequately describe what went on, and how I felt, but all of them have fell rather flat. I might make one more attempt. I hope - for the sake of the lovely PR woman who organized that whole thing for me - that I pull through.

The fear that holds me back from updating this blog so often, and being so open, is that I will share too much of myself with the world. Telling you about my health is not always telling you about me. In fact, it most assuredly is not telling you about me much at all. I put on a very good show for everyone, get a few laughs hopefully, and move on. Take a bow. A few air kisses. Applause, applause. The end.

You don't see me. It's all a slight of hand. Or words, rather.

Anyway, I will give you the most recent update:

I am at a junction in life right now and I am trying to decide which path to travel down.

The first is Responsibility: To forgo any travel plans and have my pacemaker surgery, thus giving up the next three months to recovery time.

The second is Travel: I recently found out that I may travel up to 60 days out of the country. Why I was not told this originally, and why I was too lazy/scared to find out this info last year is not something I want to dwell on; what matters is I can go, I want to go and I want to be out of here as often and as long as money will permit. I had planned on going to a couple of countries - through helpx.net - and the one family I was very much hoping to stay with never replied. Sadness. I lost a bit of momentum for my sojourn, but I still would like to go.

So the question is: Do I go and have another adventure, or do I stay and be responsible? Get my pacemaker changed so I do not have to worry about it crapping out on me in another country; or go now while I have a good chunk of time? I am also a Maid of Honor for a wedding next August; I feel if I postpone my trip until next year, I will be putting my friend through some stress she ought not to go through alone as I am one of the key planners.

There are many Pros and Cons for either decision, and with a recent bout in the hospital I am finding especially pressed for an end to this. TEAM RACHAEL! has given me the all-clear to travel, and they are leaving the ultimate choice to me.

On one hand, I feel patience is a virtue and more money and energy will be accumulated for a trip in 2014. On the other hand, I am weary of being home, and I feel I should seize any opportunity that comes my way.

You Are Full of the Disappoint!

So I have big plans for this year. Big plans. Enormous plans. Plans that will theoretically take me out of the country for months at a time. However, I need to get my pacemaker battery switched out. As of December, its life expectancy is "3-18 months" which is a fucking joke of a range considering how much can happen in that amount of time. 

What people seem to fail to realize - from both the Professional Patient and the Totally Ignorant People - is that my life has to come to complete halt when shit like this pops up. But putting my life on hold for "3 to 18 months" just doesn't fly with me. I have plans. I want to make good on those plans. But I don't want to be caught in another country when my pacemaker decides to say "fuck it, I'm out." I want this to not be a concern of mine. I want to be able to get on a plane and just go.

Why didn't my electro-physiologist just advise me to get this done straightaway? I would have had this shit scheduled the first week of January and dollars to donuts I wouldn't be sitting here at 10:00pm on a Monday angrier than I've been in a long time. No. He just shrugs and tells me something like "I'd take the gamble." I listen because 
1) I respect the man's opinion
2) Let's be real; I am not happy about going through another goddamn surgery

I think #2 is just the reason why a casual attitude has been put on up until now, though. Everybody is terrified of what my body is going to do once it gets knifed up again. After discussing the matter with a friend, though, I realized what a damn moron I am being and I need to schedule this event right away and just get it the hell over with. But I needed to plan a trip for March or February. So that shaves another 10 days off of my ever ticking calendar and by the time the ball gets rolling the frothing harpy who guards the scheduling book is just unrelenting in every way imaginable. The earliest date to get this show on the road? February 25th.
The date I need to get on a plane? March 14th.

I'm livid. I'm livid at everyone involved, myself included of course.

I am just at a total loss of where to go and what to do. Do I cancel my first trip? Do I postpone the surgery until late March, giving me just barely over a month to recover before the big trip? Do I risk postponing it until I have a few months between traveling?
I don't know. I just don't know. 

See, the issue is recovery and how long it is going to take my body to do so. Everyone, myself above all else, is biting their nails about this relatively simple procedure because of the nature of my history and anatomy. My pacemaker is located in my left abdomen, in a pocket under muscle, and the procedure will require the surgeon to reopen the latter part of my open heart scar - which is not something I desire. I'd rather have a brand new lateral scar, to be honest, but I told him go with whatever is easiest. Given my history with fluid retention at the slightest provocation, everyone is anticipating that I am going to run into a similar issue that I found myself dealing with shortly after the last procedure in 11/2011. Now, I wasn't on the mega high dose of diuretics last time as I am now. So this may very well tip the scales in the favor of a speedier recovery. 

Who knows. (The Shadow knows!) It's a gamble. It did not help that I thought the consultation I went to on Friday was going to be super casual and the surgeon ended up triggering me (unintentionally, of course) into some heavy PTSD feels. I was really one step away from breathing into a paper bag. He didn't intend to, obviously, but he didn't want to give me any illusions as to what to expect, worst case scenario. He didn't want to sugarcoat it as a simple Duracell battery switch out - which is, to be honest, what I thought it was going to be.

I don't know. Right now I can't make any hard core decisions until I talk to TEAM RACHAEL! and hear what they say. I'm a grown-ass woman, I make my own mind up obviously, but their input is valued above all else.

I just really wish people had been upfront and honest with me from the very get-go of what this procedure entails. It would have saved me a lot of time and grief and I'd have made sure to set aside the necessary time to heal properly. I cannot continuously put my life on hold for bullshit caused by miscommunication and people in my life who flat out refuse to communicate honestly and effectively with me.

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?

Heart to Heart: Lena

Question 1: Can you tell us your name, age, occupation (if you're unemployed just say the occupation you're seeking and if you're a student, say student), where you hail from, and the type of congenital heart defect you were born with.

I'm positively ageless, although I can't deny that I vaguely recall some of the 1970's!  I'm a freelance writer, aspiring aging super-model and crazy cat lady from Southern Illinois! I was born with a VDS, DORV, and PFO. (Ventricular Septal Defect, Double Outlet Right Ventricle, and Patent Foramen Ovale, respectively.)

Question 2: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

I've had 3 surgeries: my first was around 5 months old when I was first diagnosed. The doctors decided to band my pulmonary artery to buy some time until they figured out to do with me. I lived for 14 years with that band, since the doctors didn't have a surgical solution. The band was essentially placed to make me "comfortable" and was only meant to be a temporary solution. My second surgery was when I was 14, the summer after my Freshman year of high school. It was a difficult surgery with several complications. My VSD was repaired, and when I woke up, I was no longer cynotic. It took several years for me to recover and feel 100%, but then in 2010, I was told my Pulmonary Valve needed replacing. It was then I discovered that CHD has long term effects; valves wear out, scar tissues forms, holes get bigger or patches tear loose. I eneded up having 5 repairs in that surgery. My VSD patch had to be replaced, the surgeon located a PFO defect and closed it, scar tissue from my aorta was remove, and right ventricle muscle mass was removed and I got a new Pulmonary Valve from a human donor. I'm doing good now. I'm very, very blessed!!!

Baby Lena with her twin sis (Lena is on your right!)

Question 3: What were you parents/family that raised you like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

Mom and dad were pretty strict and they did not discriminate! If they were worried about me going somewhere, both sis and I couldn't go. They never said "you can't go because of your heart issue or we are worried about you."  I wasn't pampered, by any means, Ha! Ha! I'm glad that I grew up thinking I had responsibility and that I was "a normal kid" at home.  My dad always told me that I could be anything I wanted to be. I always remember him saying that to me. My mom always told me to be proud of my scar. I used to think she was silly! :)

Question 4: How did your health issues affect your school life and your social life, as a kid and teen?

I lived in a small rural community until I was 15. It was extremely difficult for me because many of the kids were cruel and many of the teachers were less than helpful or understanding. I was called Purple Lips, Smurfette, Pale Face and ugly. As you can imagine, I was very insecure, timid and painfully shy. Every summer, I hoped that kids would somehow change their minds and that the new school year would bring acceptance. It only took a few minutes on the school bus to learn that the new year would be the same as the last one. Thankfully after my second surgery, I was able to change schools. I immediately made friends and found acceptance. Still, the pain of the past lingered. I've struggled with my appearance my whole life. I've been a work in progress and accept where this discomfort resonates from.  

Question 5: How did your heart health affect the relationship with your siblings (if you have any)? If you have none, how did being an only child with a CHD feel?

I have a twin sister, Gina, who is 6 minutes younger and a brother 5 years older that me. My sister and I have always been close. My health has always been a deep worry for her. She had to protect me from bullies at school. She also had to endure the fear that I may not be around after every illness or hospital stay. On the positive side, I always tried to keep up with my sister. We lived in the country when I was younger and spent our days roaming the country side or trying to ride our bikes on the graveled roads. I think that physical activity helped me endure my surgeries better. I think my CHD had made our twin bond even stronger. She has suffered CHD as much as I have. Knowing I could never leave her has made me even more determined! My older brother and I do not have a relationship. He has made it a point since I was little to ostracize me from his life. I'm not sure if he is jealous of the extra attention I got when ill, but it is a dynamic that I accepted a long time ago.

Our slice of heaven, Lena!

Question 6: 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.)

I wish I could be a runner! I love to eat and my limited abilities in cardio makes my gain and lose the same 10 pounds over and over. When I was little, I was told that trying to a carry a child would be potentially fatal. At the time I grieved over that. Thankfully as I got older, I made peace with that, too. I figure if I ever do get the maternal urge, I can find a way to make it happen. It may not be a conventional, of course, but what aspect of my life is?

Question 7: How is life with your health easier and more difficult as an adult than it was when you were a kid?

Making big decisions regarding your health sucks! I needed heart surgery a year and a half ago, first time as an adult. It was a terrifying surprise! Picking a surgery date, doing the research, signing consent forms, etc. was such a crazy experience! My dad, whom I lost to cancer at age 20, was a police officer. He always knew how to say the right thing. I always felt safe when dad was around, no matter what was going on. My mom has been battling health issues the past few years and was not able to help me in my decisions and doctor appointments. I appreciated them even more after that experience. I grieve for the burdens they carried for me. Dealing with my health is easier in the aspects of medical advancements. I remember a brief time when I was little that cardiac caths was a surgical procedure that involve an incision in your groin!

Question 8: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

I can't say I've ever kept from stressing out! I am the kinda person that wears their heart on her sleeve. I have a great support system of friends, family and people I've met through the Adult Congenital Heart Association. Being able to vent to those who've have similar experiences have helped me tremendously. They also help me keep things in perspective! As far as dealing with stress, sometimes I like to eat (as I mentioned earlier). I also love to take walks, and hit the gym. There's a great release from being active. I can honestly say that the gym is the only place I can clear my mind. I also like to indulge in late night TV. I love shows like Roseanne, Seinfeld and The Golden Girls!

Lena, after her last heart cath

Question 9: To date, what has been the most frightening moment in regards to your health?

Being told in 2010 that my heart has a whole lot of issues going on and that I needed a big ol' surgery! Talk about an "OH SH*T!" moment! Everything came crashing down at that moment! I had convinced myself that all of that was behind me, and in my 30's I ran face first into it! 

Question 10: What was your attitude about your heart health like when you were a kid, and then as a teen?

I think I've always had an appreciation for health. I've never smoked, never been a drinker, and always tried to keep active. Although I was in denial that I'd ever need surgery again, I've always wanted to make an attempt to take care of what I have.

Question: 11: What are your hobbies and passions? 

I love animals, literature, Jazz, food, friends, photography, travel, history,  and vintage clothing. Although I have a degree in Creative writing, I have to consider creative writing a hobby at this point. I love helping animals (if I had a dime for every stray I've ever helped) and my kitties are my spoiled brat kids! I love to visit historical places, and graves of famous or notable people (it's fascinating, really!) I hope to roam the streets of London and Paris in the next year, and visit Germany, where my dad's family came from. I recently became an ambassador for ACHA, and CHD awareness has become a passion of mine. I am so frustrated that nobody seems to know about or understand the #1 birth defect or think it's like Coronary Artery Disease. I also love make-up artistry, floral arrangement, cooking, traveling New England...oh gosh, I can't think of all the things I like to do right now!

One Hot Tamale

Question 12: 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?

I had a friend who is a gym rat recently tell me that I wasn't working out hard enough and that I should be running. I was trying to convey my frustrations about getting 10 pounds off slowly and how it failed. I will never be a runner. It angered me because she was trying to act like I was making excuses. I wanted to yell at her and say, "Well, your heart isn't enlarged; it doesn't leak or have weird plumbing!"  Regardless of the fact that fitness goals will most likely take me twice as long doesn't mean I'm not trying! There will always be people that just don't get it!

Question 13: What has been the toughest part about living with heart health issues?

The fact that we still don't truly know the long term effects of CHD in adults. 'Nuff said!

Question 14: What are your aspirations for your future?

I plan to live until I'm very old. I'm going to travel the world, be as happy as I can be, and make a difference in as many lives as I can! That may sound like a general answer, but it contains so many plans and dreams that I simply can't convey into words. All I can say is watch out!!! :)