Made for Joy

Jumping into the abyss.

The reality of being on sabbatical is starting to settle in. In short, it’s wonderful. I’ve been able to spend my days doing what I want; reading, cooking, organizing, etc. I’ve started making recipes from Cooking For One by America’s Test Kitchen and everything I’ve made has been delicious. Because the portions are small, I’m cooking more often which is allowing me to enjoy so much more variety.

My first week was spent prepping for my sabbatical. I finished putting away Christmas decorations, cleaned house, and completed a major pantry clean out and organization project:

This week has much slower. Wednesday I spent most of the day reading Ina Garten’s memoir, Be Ready When the Luck Happens. Such a good book, I would recommend it. She’s had a very interesting life. I loved that she doesn’t shy away from talking about the difficult things she went through - an isolating childhood, a separation from Jeffery that allowed her to discover who she was, exhaustion and business mistakes while learning how to run a speciality food store. But what she focuses so much of her energy on is the joy that her life brings her. That’s something that resonates deeply with me. Yesterday evening Front Range, a coffeeshop/bar in my neighborhood, celebrated Galentines by hosting a vision board event. I sat a table with a women I didn’t know and we worked in companionable silence for over two hours creating our vision boards. Only at the very end of the evening did she ask me my name. We chatted for a bit and both agreed that it was so nice to get out of the house and sit with someone else, even if you don’t know them. We both live alone with our cats. Here’s the board I created, inspired by what I want the current season of my life to bring: Beauty, joy, friends, and new adventures.

Health Updates

Let’s get the bad news out of the way first. My cardiologist sent a referral for transplant assessment to Mayo Clinic and it was declined due to surgical complexity. This includes both my complicated anatomy and the high pressure in my veins and arteries.

Now for some good news. I saw my cardiologist at the end of January and overall, it was a positive appointment. We’re both very happy with how stable my weight has been since the end of December. This means that my body isn’t retaining excess fluid. For the last few years I’ve constantly gone up and down; my body would retain fluids and I would take a PRN diuretic to get rid of it. If that didn’t work I’d have a paracentesis, which is a procedure that involves inserting a needle into my abdomen and draining the fluid. After coming back down, I’d go back up again. It was a constant seesaw. So my current status is a huge improvement. It’s also easier on my heart and other organs which means I have more energy and feel better overall. The other good news that came out of that appointment is that there is potential for the pressure in my veins and arteries to go down. My heart has gotten stiff and the pressure in the upper chamber is high. This causes the pressure in my veins and arteries to rise because that pressure has to be higher than what’s in my heart in order to pump blood through. The new medication I’m taking, Jardiance, is supposed to soften the heart and improve functioning. This may lower the pressure in the upper chamber which would lower the pressure in the veins and arteries. Unfortunately it takes six months to a year to work so we won’t know for quite some time if it’s having an effect.

After Mayo declined my referral, my cardiologist sent a referral to Vanderbilt. I have yet to hear if they are willing to accept and do the assessment.

Politics

While I don’t intend for this substack to be political, I must confess that I am extremely terrified of RFK being confirmed as the Secretary of Health & Human Services. That combined with the massive funding cuts being made to Federal Departments really impacts people like me. NIH grants that fund medical research are incredibly important. My ability to live a long and healthy life depends on medical research that can lead to advancements in medical technology. If this is something that worries you too, I encourage you to call your Senators and House Representative.

One Last Thing

Today is national CHD Awareness Day. CHD stands for Congenital Heart Defect. So happy CHD Awareness Day everyone. I hope you all do something fun for Valentine’s Day. This day isn’t limited to romantic love; everyone should celebrate, even if that’s you doing something nice for yourself.