The Feisty Fontan

Six months of radio silence and here I am posting twice in a week. I just posted a blog titled “Happiness is Hard Work” only to realize afterwards that the only thing I’ve been working hard on for the last few weeks, the thing that most of energy has been going to, is being a Big Ol’ Whiny Twatwaffle.

I mentioned in my last post, that I learned my protein loss had gotten WORSE since my Protein Losing Enteropathy (PLE) diagnosis. Despite taking the steroids (which I hate, hate, hate taking) and following a high protein, reduced sodium, low fat, high medium chain triglyceride diet it had gotten worse. Not only did it not get any better, it had gotten worse. Like “more than double the amount of protein I was losing before” worse. This news gave me this simmering hatred of my gastrointestinal tract and a sour “woe is me” attitude that I started carrying around.

Luckily, I managed to tuck this dark and twisty feeling away and enjoy the holidays. I legit had the best Christmas of my life. We came from Florida; my brother’s family came from Washington. We converged on the family farm in Missouri for the first Christmas we’ve all had together. I can honestly say that I spent that week, with everyone on my “Top Ten Favorite People in the Universe” list, just being happy and being together.

But, as my next doctor’s appointment grew closer, I got anxious, scared and super whiny. I whined because I couldn’t poop. I whined because I couldn’t stop pooping. I whined when I was tired. I whined when I had insomnia. I really whined about my weight gain and extra squishy chin.

I whined because I hated all the dresses I had ordered as possible “wedding” dress options. I whined when I accidentally got a Rachel/Mushroom/Mullet haircut. I sat across from my wonderful, supportive fiancé, during a delicious and expensive dinner, and whined about second marriage statistics.

I whined about turning forty. I’m about to outlive every age prediction my mom was given and to see an age that a lot of heart kids don’t get to and I’m freaking whining about it.

Being a chronically ill person can really suck and some of the challenges that having a serious illness brings do warrant some whining. I am a big believer in the therapeutic power of venting and letting it all out. But I wasn’t venting about being in extreme pain or having to undergo an uncomfortable procedure, I was just being whiny.

So, I went to my appointment. It wasn’t the worst appointment ever. I didn’t hear anything that I wasn’t expecting to hear. But it was an appointment where some big scary heart stuff was talked about and a cardiac cath was scheduled for March. Towards the end of my appointment, both my doctors told me just to relax, to enjoy turning 40, to have fun getting married and to just have some normalcy before my cath.

And leaving my appointment, that was my plan. On the way home my fiancé and I stopped on a whim, and after months of looking, we found a wedding set for me and a wedding band for him. This happy accident, and the resulting diamond on my finger, was a delightful distraction from my whiny ways.

On the day after my appointment, which was Valentine’s Day and the day before my birthday, I woke up with every intention of just being happy that day. I was fluid overloaded at my appointment and had to take some extra “booster” diuretics, so I knew I was gonna spend the day peeing.  My parents were over helping us work on our house, we were talking about wedding stuff…it was going to be a good day. I took the extra diuretic, lost three pounds in an hour, drink a high protein and high potassium smoothie, and hopped in the shower. This is where the day went south….

I briefly glossed over my allergic reaction in my last post. This was not some sniffly nose, itchy eyes allergic reaction. It was a rapidly spreading, all over, hot pink rash, swollen tongue, trouble swallowing allergic reaction. It was a go the ER right away kind of allergic reaction.

As I am laying there, trying my hardest to just swallow and watching the student nurse screw up my IV insertion so badly that I’m gushing blood on the floor (afterwards his supervisor actually asked him if he had slaughtered a deer on the floor), I started thinking this was the end. I started thinking about all the odds I had overcome and all that I had been thru, and now I’m gonna die from something totally random. I started thinking about how my life is in the happiest place it’s ever been in, I’m so close to marrying the love of my life and I’m kicking the bucket the day before I turn 40.

Obviously, I didn’t croak. Once they got IV Benadryl, Pepcid and Prednisone in me my symptoms quickly subsided.

As of right now we have no concrete known cause of my allergic reaction. I have a couple of theories. These theories could possibly be considered rare and unusual medical happenings, but I kind of specialize in rare and unusual.

• The new diuretic I had taken that morning was the first possible cause that sprung to mind. I had taken this diuretic before, but this bottle was from a different manufacturer than the last time I had taken it over a year ago. There may have been a dye in this one I had a reaction to. Now, I take pills that are every color of the rainbow and have never reacted to any dye before. And I had taken the pill about three hours before the reaction, so I’m thinking this theory has the slimmest possibility.
• Then there was the super tasty smoothie I had from a smoothie/meal subscription box I use. The one I drank about twenty minutes before my reaction started. Made with hazelnuts, cacao nibs, avocado, coconut, bananas and pea protein and picked because it was both high in protein and high in potassium. I had eaten some version of all these ingredients in the previous week. However, I had not had this particular smoothie before with all these ingredients together. I’m allergic to latex and some people that are allergic to latex are also sensitive to bananas and avocados. While I eat at least one those foods almost every day and have never had any kind of reaction, maybe the combo of bananas and avocados together triggered one. This theory has some plausibility.

However, my last possible theory has no medical basis and is somehow the one that I actually think is the most feasible. I think the universe was tired of my whiny ass and decided I need a smack upside the head. I think the universe thought I was getting cocky and ungrateful for all that I’ve been blessed with and needed to give me a reminder that it can come to an end anytime. Maybe it was teasing me with a little shortness of breath as a way to remind me to breathe, relax and enjoy.

Happiness does take hard work; it takes hard work to appreciate it and to maintain it. Sometimes doing that work can be challenging when you have a chronic illness and are already working hard on staying alive and staying healthy. Having a chronic illness can be  constant reminder that life is short and “good health” can be fleeting, and I want that reminder to motivate me to work hard on appreciating every day I get instead of fueling my “why me” whiny puss attitude. Nothing like an almost near-death experience to get me out of my funk and back to enjoying being happy and alive.

So, Universe…if you are listening….I solemnly swear, cross my mended heart, pinky promise that your message was received and whiny Liz is getting pushed aside. Thanks for the reminder that life is short. While it could’ve been a little less weird and scary, it was certainly effective. I can’t promise perfection, but I can promise a more conscious effort in using my energies towards loving the cute nurse I’m marrying, caring for the step kids that make my heart smile and enjoying any other happiness you should bestow upon me. I will work my hardest to not stress about what my newest poop test results are or what my cath will find, because you have very kindly given me the best personal and medical support system possible.

PS—Also, dear, sweet Universe—If you could please, please, please not make me allergic to coconuts or bananas or avocados, I would really appreciate it.