I haven’t written for a while, and here’s why:
This year more than ever I was looking forward to the weeks leading up to and through Christmas and New Year’s. I wanted to feel that silly, childlike sense of impending joy. I wanted to yell carols (I can’t sing to save my life) at the top of my lungs. I wanted to eat peppermint bark with abandon. I wanted to look at colorful lights and believe in magic.
But I didn’t.
Instead, I’ve been sick with a cold that arrived a few weeks ago. I’ve been angry. I’ve been tired. I’ve been frustrated. I’ve been scared. I’ve been sore. I’ve been sad. Very, very sad. Moments of optimism have been few and far between. I can’t take any credit for getting through this; that goes to my husband, who has taken care of me in more ways than he knows. I would be lost without him.
When I realized what was going on, I decided to give myself a break, kind of resigned myself to being somewhat miserable until…well, until tomorrow. New year and all that, yes, but more importantly to me, it’s the day before my birthday, which is January 2. (I’ll be 45, for anyone keeping score.)
I believe in celebrating my birthday, always have. This year, though, it’s even more important to me. Having a birthday—and being able to celebrate it—is a big deal. It means that despite my wonky heart, I’m alive. And not just barely, either. So while I don’t expect the heavy-duty negative emotions to evaporate, I’m optimistic about brighter days ahead.
2015 has certainly been a year I’ll never forget. It hasn’t all been bad—not by a long way—and the truth is that the part I’ll remember started on September 24. That’s the day my world changed. For the worse, sure, with some pretty terrible news, but the thing is, the part I’ll remember most and always is that I had no idea—honestly, not a clue, really—about the power of my tribe, my chosen family, my friends. I didn’t realize that you guys could save my life. That you would want to. And that I’ll never, ever be able to thank you enough.
Whew! Ok, now, on to the factual updates…
I have signed up for health insurance, which costs a small fortune and becomes active on January 1. I don’t love having to pay so much for it—not one bit—but to be clear, without the Affordable Care Act, I wouldn’t be able to get any healthcare at all. For the record, I still think we as a country could do much better when it comes to healthcare, particularly if we chose to join the ranks of the civilized countries that have single-payer systems.
Because of the kind of insurance I got (which is not the most expensive available), I had to get a new GP (because the one I’ve had for 9 years doesn’t take my insurance). I have an appointment there on January 8. The woman I spoke with to make the appointment was lovely, and so I’m optimistic that it will be a good practice, even though I’m still miffed at having to change.
I have to have a local GP for two reasons: First, I need to be able to get my levothyroxine prescription renewed. Unfortunately, when my heart went wonky, my diabetes and lack-of-thyroid didn’t disappear, so I have to still look after those. Second, the insurance only covers 50% of anything I have done out-of-state. This means that I need to get certain cardiac tests and procedures in Florida, and in order to do that, I need orders written by a doctor licensed in this state (Dr. Desai, understandably, is not).
I didn’t realize when I made the appointment that the new GP I’m seeing has the facility to do echocardiograms in the office. But they do, and that will be handy, because my next appointment with Dr. Desai is on January 28, and I need to have an echo before then. This appointment is A Big Deal because we’ll find out whether the pills are working and get some idea of next steps.
Speaking of pills, Dr. Desai doubled my dose of valsartan. I think the idea is to take as much valsartan and carvedilol (Coreg) as my body can handle, which for the moment, is 80 mg and 6.25 mg of each twice a day.
Dr. Desai wanted me to keep an eye on my blood pressure when he increased the valsartan, so we got a blood pressure machine. I’m used to testing my blood sugar, so being able to test something has actually been good. The results haven’t been terrible; my blood pressure is a bit low and my heart rate is a bit high, but neither dramatically so. When I was sick my heart rate especially shot up, but as I’ve gotten better, it’s settled back down.
When I get the echo, it will tell us what my ejection fraction is. Last time it was tested (when I had the CTA) it was (still) 15%. If it’s remained at 15%, I think that counts as some kind of stability. Obviously it would be great if it’s improved, but my understanding is that’s unlikely. But the good news is that if it is stable, it’s possible for me to live a long time on meds, even with my ejection fraction at 15%.
I imagine we’ll probably have to talk with Dr. Desai about the possibility of my getting an implanted defibrillator. The idea of this still makes me nervous, but I’m getting more used to it. The biggest bummer is that I won’t be able to take up welding or use a light saber. Feck.
So there we go. The last update of 2015. I want to leave you with this:
Thank you for reading. Thank you for being here for and with me. Thank you for reminding me why we’re all here. I wish us all happiness and kindness in 2016.