Are you a patient with chronic illness or a rare disease?
Well, I’m pretty sure your legs weren’t obliterated in a terrorist attack, imploded by an exploding fertilizer plant, or shaken and stirred during a 11.47 magnitude earthquake. So this may be a good time to quit bitching.
Boy. There’s really nothing like a 24/7 streaming CNN marathon to make you feel like the world is a harsh, cruel, and horrific place.
But then–there’s Happy.
And that’s pretty much been our natural state all week. Sitting on the couch with the blankets pulled up over our heads.
I mean who wants to venture out into that insanity?
It’s actually been a great week to hibernate.
My first world problems of this week include but are not limited to: still not regulating back to normal since missing one dosage of my beta blocker last weekend, meaning I’m randomly passing out in unintentional, unexpected 4-hour coma-naps, having mountains of work to do, dying in the Florida 110% heat and humidity, and dehydrating like it’s my career.
But none of that is really news.
I do have good news though. R.J and I are finally going away the week after next–to St. Augustine. Neither of us have ever been, and it’s only a few hours drive from South Florida. We’re going for our SIX YEAR anniversary. Six. Yep. That’s how long he’s kept me wrapped around his finger without wrapping something around my little finger. But this should be a great trip–for our SIXTH anniversary of dating.
Anyways, we could both really use the break. This week he’s been working on a project that–while he’s loved all it’s scientific challenges, has left him coming home at around 1:00AM and had him at work all day today (on a Saturday.)
In other news, last weekend he wanted my help shopping for some new clothes and out of the blue decided that it was time to buy a nice outfit, tie included. Only he spent fifteen minutes in the dressing room trying to figure out how to actually tie the damn thing before taking a lesson from the dressing room attendant at Nordstrom’s Rack.
My shopping had to wait until this weekend, because work had me going non-stop. By Friday I’m usually in such a frazzled, brain-dead state that if I don’t have exactly what I need to do and say written down in a wordpad doc on my desktop–I’m just a sad, lost puppy.
And this week was even worse because of the weather. I forgot how bad my POTS was during the summer and I’m panicking slightly because with just experiencing one week of real, summer heat I’ve already almost passed out while walking Happy. I even ended up having to get two IV’s this week.
I’m working on a plan for how I’m going to manage the heat this summer. I have to take him for a walk in the afternoon and around 5:00 PM. I bought an umbrella and a visor, but I may need to invest in one of those misting/portable fans and Camelbak full of Powerade.
For now the Saline Therapy is helping a lot, making me a lot more stable than I was last summer. During our strategy meeting for his upcoming POTS program, Dr. Santa Maria had me try out the new tilt table. Funny thing was, before a few weeks ago–I’d never actually been on a tilt table. I was diagnosed via heart monitor while “caught in the act” (of leaning down and standing back up while at the hospital.) It was a real House moment…
And I’d heard horror stories about the Tilt Tables…that POTS Patient’s heart’s had stopped, that they’d fainted and been groggy for weeks afterwards.
So, naturally, I was like–well, shit–sure I’ll give it a go.
I actually had Curt take some pictures of me on the tilt table—but they came from a horribly unflattering angle, so they were MYSTERIOUSLY DELETED from my SD card. Weird.
Anyways, my experience was just fine and dandy. Of course, I’m on beta blockers, just graduated cardiac rehab, and had just taken a giant bag of saline IV–so I may have had a bit of a leg up on many POTS patients who were just being tested.
Those things are actually kind of fun–you know–when your heart isn’t stopping from being upside down.
But then, I think taking naps are fun. We all find our own enjoyment in life….
Speaking of things I enjoy in my life…
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