Shabby sheathing and scans
Up to Atlanta this week for scans! This is a quick in and out because the schedule stinks - but you get what you get w hospitals I guess. We will drop Jane for ballet, zip up to the hotel by the hospital, have an exciting day of scans, and hurry back for a super late arrival home so the kids aren’t alone too long.
I am dreading this round of scans. I want to say that I’m dreading them more than usual, but probably I’ve just forgotten about my usual level of dread. These are boring, non-scary scans, and I’m dreading them even so. My jugular vein needs a closer look - could be nothing but its sheathing is looking shabby. It has shabby sheathing. I never even heard of veins having sheathing before, and I didn’t google somehow and I am not really sure what needs to be looked at here. They’ll have a closer look, and then I’m having a regular, boring EKG, and a plain old doc appointment with the specialist, where I’ll get the details and hopefully no new concerning news.
I’m nervous that nothing will be found to explain why I’m so tired lately—too tired to do much of anything, needing naps I never used to take. I crash after work and my voice is weak and worn out and I fall asleep on the couch, and I HATE sleeping in front of people. I’ve never had much social energy, but I have none at all these days.
What if the weird, unsheathed vein needs some kind of scary vein repair? What if that costs a buttload of money? I’m nervous that the crappy mitral valve will be regurgitating (what a gross word) even worse and will need to be repaired or replaced, and I’m nervous that it will be the same and that the decision will remain up to me. I haven’t been able to decide when my symptoms are not bearable and I’d opt for the repair, which we want to put off as long as I can manage it. I can put up with a lot of symptoms - I think. Frog in a pot, maybe. The possible looming loss of our health insurance makes me think I ought to hurry and have this done, perhaps, if it’s even possible to get it done in time.
Average life span for what I have is 51-56 years. Also, no one can say really what the average life span is for this - it varies hugely and often people live to an almost-normal age. It’s very serious. Also, it might be not so serious. This weirdness left me feeling very frightened at first and now mostly flat. I wish I could know how serious this is or not - this isn’t something that gets a staging or an expected prognosis, because it’s rare and unusual. But I like answers and predictions and while I imagine there’s something interesting and good in this uncertainty, I am not a fan.
If you’ve been through something similar-ish, I’d love to hear how you navigated it. I’m still figuring out what questions to ask and what decisions feel right. I have a list for the doctor and I feel silly about my list and I’m wondering what to wear (clothes have to be EKG friendly and also you don’t want to be a slob) and what to say and how I can win at being the smartest and best and least-annoying patient, which is a normal thing to want to win.
every time i ever said i want to die
By Andrea Gibson
A difficult life is not less worth living than a gentle one.
Joy is simply easier to carry than sorrow. And your heart could lift a city from how long you've spent holding what's been nearly impossible to hold.
This world needs those who know how to do that.
Those who could find a tunnel that has no light at the end of it, and hold it up like a telescope to know the darkness also contains truths that could bring the light to its knees.
Grief astronomer, adjust the lens, look close, tell us what you see.
