The Feisty Fontan

So, I realize now that I may kinda suck at this whole blogging thing…another six months has passed since my last blog post. I still want to write my blog. I still have A LOT to say about life as an adult congenital heart patient and overall chronically ill person. It seems crazy to keep saying I’m busy but having a chronic illness is time consuming.

Because of my complex health issues, I need to see highly specialized doctors, so I travel about 3 ½ hours one way to see my care team. My doctors and the care I get there are totally worth the mileage; I would drive triple that.

Since my last blog post I have seen a hepatologist, a gastroenterologist, a hematologist, an electrophysiologist, an interventional cardiologist (twice) and made three visits to my regular ol’ adult congenital cardiologist. I’ve had two iron transfusions, collected four poop samples, had a liver ultrasound and an echo. I’ve lost count of how many vials of blood I’ve had drawn.

I was weaned off my steroid, only to later learn that the amount of protein I am leaking in my stool is more that double what I was leaking when I was diagnosed. I went back on the original higher dose of steroids. Since then, I have had a lovely time entertaining my family with my hot flash dances and insomnia inspired Amazon purchases. The steroids and my love of baked goods worked together to give me a bigger butt for Christmas. I have played connect the dots with my purple bruises. I have spent hours unsuccessfully trying to contour my lovely moon face and quartz-rolling away my two extra chins. 

I spent Valentine’s Day in the local ER having a severe allergic reaction. Was it from a newish medication or a sudden onset of a food allergy? No one knows but looks like I’ll be seeing a new kind of doctor to get that figured out. Not being able to take a medication that helps me feel better or having to deal with a strange and severe food allergy, on top of my already complex diet, both sound like super fun options. I’m really winning with either possible scenario.

And even with the laundry list of doctors I’ve seen in the last six months I still have other health issues that probably need attention. My sinuses keep getting so compacted that my teeth hurt. I seem to get a migraine the instant a raindrop leaves its cloud.  I’m driving around in a contact prescription that’s three years old. I’m not intentionally trying to ignore health issues, but it’s all about priorities.

Between all the varying aspects of managing my health, I’m still working hard on living my best life.

I got engaged to the person I was always meant to be with. A person who makes me feel loved in a way I didn’t believe was possible. A person who gives the kind of support that every chronically ill person dreams of. A person who spent three hours holding my hand while a room full of doctors talked about big scary heart stuff and then a few hours later bought a diamond ring to put on it.

I essentially became a full-time stepmom. As a childless woman I had a lot to learn about being a parental type figure. I’ve made about 470 bowls of Ramen noodles, 152 loaded baked potatoes, 29 pots of my homemade mac and cheese, and 14 batches of muffins. I figured out how to make strawberry frosting for a strawberry birthday cake. I’ve earned merit badges in both Vomit Cleanup and Delousing. I have realized that these kids are the best surprises that life has ever given me. I have discovered that my capacity to love these tiny humans is infinite. I’ve also discovered that their capacity to fight to the death over who gets the blue bowl is about equally infinite. Our dirty laundry hamper capacity also seems to be totally infinite.

I’ve spent a totally insane amount of time and money on my hair. After a lifetime of stick straight hair, all my health and medication changes have turned it into a super thick, crazy poufy, wildly wavy hot mess. I started the Curly Girl Method. I got two (bad) hair cuts in an attempt to give it any shape other than triangular. I spent more hours watching strangers wash their hair on YouTube that I’ll ever admit to. And I don’t have an exact count, but let’s just say that I’ve amassed quite the impressive collection of hair care products. I quit the Curly Girl Method. I have failed in all my attempts to tame the beast and am trying my best to adopt an IDGAF attitude so I can set it free to do its thing. I mean, my hair doesn’t really need to look that good to go to Wal-Mart anyway, right?

But mostly, I’ve just tried to enjoy every single second of being alive and being happy.

Yesterday was my 40th birthday. Forty years old. A girl who was never expected to see double digits is forty freaking years old. It is not lost on me that this is kind of a miracle. People freak out about turning forty because it’s seen as the start of middle age. Honestly, my “middle age” age has probably come and gone. But I am going to embrace being forty. The pain and struggles I’ve endured have helped me make it to see forty years old. They were all steps on my road to happiness. My biggest life goal is to have as many, or more, happy years as I had unhappy years. It doesn’t matter how many stool samples I need to collect, how many pills I need to take, or how many tests and procedures I’ll have to go thru because these are the things moving me towards seeing my my 50th birthday….maybe even my 60th.