The Feisty Fontan

So, I’m realizing that when you write a blog about your struggles with a serious chronic health condition and you don’t write anything for five months that people start to worry that you’re dead or mostly dead. Rest assured, I am still alive and still feisty.

A few weeks ago, I had dinner with some old friends, and they asked if I was still blogging. I said “Well, I am not NOT blogging… I’ve just been busy, which kind of sounds ridiculous for someone who is unemployed to say.” And one my friends responded with “You’ve been busy living your best life!” Afterwards I kept thinking about what she said; I wasn’t sure I could say that I am at the “living my best life” point yet, but I have been working hard trying to sort thru the pieces of my life so that I can build them into my best life.

Prior to my Summer of Hell ‘18, I was kind of a zombie shuffling thru my life. I was severely unhappy and pretty damn sick.  Having every single aspect of my life change forced me to become an active participant in my own life; I couldn’t keep shuffling thru and just letting the days pass because I had a whole lot of decisions to make.

A lot of my life decisions were on hold pending my Mayo appointment. However, I left Mayo with more questions than answers. I wanted resolution and a definitive plan. I should have known better. As a member of the first generation of Fontan patients to live into middle age, we are the guinea pigs. There are no definitive answers regarding how to care for us long term. Some of the things that my doctors at Ochsner have done, things that I strongly feel kept me alive last summer and have made me feel better than I have in a long time, are things that Mayo doesn’t do anymore because they feel these things aren’t effective.

I was frustrated leaving my Mayo appointment because I wanted answers. I needed those answers to move forward with my life. I had spent all the months prior in a state of limbo where I was always waiting on something…for my health to get stable, for my divorce to be finalized, for the magic solution that would allow me to move forward. I soon realized my chance to rebuild my life on my terms was going to pass me by if I didn’t start making some decisions and start truly living my life.

So, over the past five months, I’ve been busy…I took my boyfriend to Seattle to meet all my immediate family. I spent a wonderful Florida Christmas with him and his family. I then took him and his kids to Missouri to show them where I am from. I got to witness my life long best friend get engaged. I went back to Seattle to meet my newest nephew. I made a new local heart buddy and spent hours having “Oh my gosh, me too!” moments as we discussed life with a heart defect. I turned 39 freaking years old. I crossed some small things off my bucket list. I drove to Nashville to see one of my favorite bands play two nights at the Ryman. I then spent 4 days sitting next to my oxygen tank in my pajamas recovering from my musical adventure.

I exhausted my medical leave at work and became officially unemployed. I started the process of applying for federal disability. I mourned the end of the HR career that I had built over the last fifteen years. I struggled with the boredom and loneliness that comes with unemployment. I tried to volunteer until I realized my current health state makes me less dependable that I use to be.

I spent time with my boyfriend and his two kids. I fell head over heels in love with all three of them. I was showered with snuggles, kisses and hugs…with some farts and burps thrown in. I enjoyed the fun that comes with hanging out with kids on a regular basis.  I discovered how it feels to have a partner that truly supports you and loves you for exactly who you are instead of who they want you to be.

I learned how to prioritize self-care. I worked really hard to follow my high protein, high medium chain triglycerides, low fat, reduced sodium, iron and potassium rich, fluid restricted diet. I managed to maintain my albumin levels within the normal range. I had my medication adjusted, then a medication added, then one stopped, then another one added, and then adjusted again. I somehow managed to keep up with all those changes with minimal confusion. I got enough sleep on a more regular basis. I had days where I pushed myself way too hard and then days where I laid on the couch recovering from overdoing it.

You know, as I type this, I am realizing that maybe I AM already living my best life…at this moment, it certainly feels like my life is the best its been in long, long time. I still have a lot of decisions to make and aspects of my life I need to work out. As my boyfriend’s seven-year-old son just told me “Liz, life decisions are just really hard.”  He’s totally right, but I think being ok with the uncertainty for now and just focusing on living my life as it comes is the key to really living my best life. And I’m hopeful that as the remaining pieces of my puzzled life fall into place, I will get to continue living my best life.