How about that last post, huh? WHAT A DOWNER.
I’d sort of resolved to not write another until I had The Answer, the all-encompassing reason behind the wretched experience that was/has been daily life up to, well, still, kinda.
Suffice it to say, The Great Answer has yet to reveal itself. But I feel like we’re almost there.
The Moon Friend has really exploded on the verbal front lately. And he’s doing a lot of mimicking. One imitation of me in particular that I find hilarious is my reading of “almost,” particularly when he’s attempting a task on his own and I’m hovering, trying to sit on all my impulses to do it for him so he can learn, man.
So he’ll be buckling his high chair straps or pushing a button or closing a lid, and that sweet little voice will singsong “almost!” Just like I do.
Such an interesting word, really, when context is considered. Almost, for him, meaning success is close. Almost, for me at the moment, is an agonizing, indeterminate waiting. It’s a knife’s edge, either way. What a massive, looming word it is.
Living in the space of almost right now as it pertains to my physical health, I’ve learned a handful of things.
- I have a genetic condition known as Hypermobility Spectrum Disorder. It explains a lot, including much in my childhood and adolescence that never seemed quite right. So if you’re a friend from back in the day who wondered why I always bailed on plans and preferred to stay home on the weekends and never played sports? SURPRISE! HSD! I spent most of the summer doing PT to help stabilize my rickety joints, but this will be (and has been) a thing forever.
- All those headaches and a lot of the fatigue and nausea? Turns out I was having what is known as status migraine, or, a migraine that just lasts… forever. I’m on a bunch of meds now, so it’s no longer an every day thing, but I’m still getting migraines 10-12 days a month.
- It is incredibly likely that I have a chronic blood cancer called Polycythemia Vera. It’s not fatal, but it’s a giant pain, and it causes the entire laundry list of symptoms from my last post. I say incredibly likely because I don’t yet have all the clinical markers necessary to diagnose the disease, and probably won’t until I hit menopause and stop having periods. But a very nice HemOnc took a look at my aforementioned laundry list, suggested we try therapeutic phlebotomy (the first stop on the treatment train for PV) and see what happened.
Gentle reader, it was like I got my life back in one fell swoop. Later in the evening on Phlebotomy Day, my head felt practically empty, loose. The next day, I didn’t have to lay down. At all. I did chores. I parented. I cooked a meal. It was incredible.
Since then (almost a month ago now), things have backslid a bit. I’ve had a few migraines, and had to take some rests. But my overall energy levels are still worlds better than they were before November 2, and even the migraines I’ve had have been far less intense. So I’m tentatively trying to step back into parts of my life I’d pretty much abandoned since the worst of this all started.
I’m not sure where we go from here, other than another phlebotomy scheduled for February. So still, I live in the land of almost.
But it’s sure as hell better than where I was living before.
I’m so grateful you’ve gotten some relief. That bit has been a blessing—I pray for more!