So, today was a bit of a whirlwind.
After hitting a depressive slump for the past few months, I
finally got some appointments scheduled when my parents came to visit last
weekend. Which was awesome; it was about time for me to start moving again.
So, after getting a list of nearby physical therapists and
occupational therapists from my insurance, we more or less picked one out of a
hat and made an appointment (at a place on both lists, so they do PT and OT, so I just made an appointment
for OT to feel them out a bit before making any further commitments). All well
and good – and I was able to get a pretty quick appointment, just a few days
later.
Yesterday, the day before my appointment, my arm started
hurting weirdly. I’m familiar with standard types of pain (cuts, bruises, sore
muscles, etc.) as well as my rather particular types of pain (which I loosely
categorize into joint pain, bone pain, and fibro pain), but this was different.
It’s something I’ve felt before, but it doesn’t happen especially often – maybe
once every month or two – and so I hadn’t talked about it with any of my docs
yet. It’s located somewhere between the bone and the surface of the skin, on
the bottom side of my forearm, radiating up into my elbow and down into my
hand; to me, it always felt sort of like my veins were being stretched out
weirdly, but that never really made sense.
Today I realized that there’s a decent chance it’s actually
my nerves that are hurting when that
happens. That explains why it’s a different type of pain – the “texture” is
different; it feels more like a spiderweb across my arm, with focal points that
hurt worse than other, and it peaks and crests much more slowly than any of my
throbbing pains normally do… and my pain meds (mostly Aleve and Tylenol) really
don’t do anything to help with it. Which is weird, because Tylenol usually
helps with any pain, regardless of
the cause, though it’s certainly better for some than others…
Anyway. The pain was quite bad, and my meds weren’t even
making a dent in it, but often this type of pain will go away overnight if I
get some good rest, so I tried to do that. Which got a bit foiled because my
dad butt-dialed me a few hours before I meant to wake up, and the abruptness of
that plus the lost hours of sleep was… actually pretty significant. Once I was
conscious, I knew I wasn’t going back to sleep, especially since my arm had
apparently gotten worse overnight. It
was now hovering around an 7.5 out of 10 – which is really, really bad. Once it
gets above a 7 or so for me, it goes from “moderately distracting” to “serious
impediment”. I spent the next few hours trying not to cry, as the pain grew
steadily worse.
Then I started thinking about what this meant for my OT
appointment later that day, and that’s when things went from bad to worse. I
was FINALLY making real progress and getting into see people who could really
help me, and suddenly this things happens that I seem to have no control over
and can’t even mitigate that may make it impossible for me to keep the
appointment – I can’t very well make meaningful conversation about my medical
issues when I can’t stop crying because my arm hurts so incredibly bad that I
can’t breathe. And that was the beginning of a panic attack. (It’s been a few
months since I had one of those. I didn’t miss them.)
For those who don’t know, panic attacks really mess with
your head. You stop thinking clearly, everything seems enormously worse than it
actually is, and it’s really, really difficult not to just curl up and cry and
gasp for air until it goes away on its own. It’s not just a matter of
willpower; your mind betrays you, so even if you’re a very rational person, it
doesn’t matter in the slightest.
Fortunately, I had the gut reaction to call my dad (that
says a fair bit about how much we’ve worked on our relationship over the past
year or so, honestly, as well as how good it was to begin with even if it was
awful on medical and mental stuff). I managed to tell him some amount of what
was going on, and he helped calm me down a bit and talked me into calling the
OT’s office and explaining to them what was happening and asking for their
advice. The woman on the phone was quite good at handling herself, and helped
lay things out for me more clearly, as well as telling me a bit more about how
OT works – we were going to spend most of the time talking anyway, and not
actually do a whole lot, so even if I
couldn’t use my arm at all it would still be beneficial to come in for the
appointment, if I thought I could concentrate enough to talk. I basically
decided “fuck it, I’m going anyway” and did just that. (I also let them know
that I’d need help filling out paperwork, since not being able to write was the
primary reason I was going for occupational therapy to begin with.)
I had calmed down a decent bit by the time I actually got
there maybe twenty minutes later, but sitting in the waiting room, I was still
struggling to control the pain and the panic; I tried to focus on the news they
had playing on the TV, and listening to the conversations the staff was having
nearby. After a while, they called me back to fill out paperwork, which went
fine – for once, the office staff at a medical institution was actually
understanding of their clients’ medical issues, and they were actually very
willing to help me fill out their paperwork! (You would think that would be
standard, but LOLNOPE. In my experience, most receptionists are incredibly judgmental
and probably somewhat overworked, and they look at me and see a perfectly
healthy twenty-year-old with no reason to have trouble filling out standard
paperwork despite the fact that they are
looking at paperwork that says I definitely have some really frustrating and
severe issues and basically tell me that they have to have it filled out
and it’s my problem to figure out how. Ugh.)
So, score point number two for this place – their office
staff is willing to work with me! (First point was helping me calm down over
the phone.)
Once I went back and started talking to the occupational
therapist, he naturally had a lot of questions about my medical history. And
for me, my medical history is an incredibly painful subject – I have to recount
my life story, more or less, and I can’t do that without crying. He saw that,
and moved us into a more private area, so I wouldn’t be quite so uncomfortable
about being uncomfortable, without me having to say a thing about it. Score
point number three!
He seemed to have some knowledge about JHS, and he was quite
attentive as I was explaining things (which takes a while and a lot of back and
forth, and some docs just don’t have the patience, so point number four). He
was impressed by my own self-awareness and knowledge of my conditions, as well
as my initiative and persistence, and while that’s becoming fairly par for the
course, it’s still neat to hear it from someone new. And then we actually did
start doing some basic therapy!
He showed me a different way to hold a pen – between my
index and middle finger, instead of between my index finger and thumb – that puts
far less pressure on the bones in the tips of my fingers and uses less finger
motion and more wrist motion for writing. (Guiding principle of physical
therapy – use the bigger joints instead of the smaller ones whenever possible,
because they have bigger and stronger muscles and more stability and can
generally take more abuse if need be.) We also played around with different
grips and foams to put on/around the pen to make it easier to use with less
pressure. I’m pretty sure I’m going to come out of this at least able to write
enough to make it through a college math course, though I probably will still
want to do essays and such via laptop (in no small part because my handwriting
has never been great, and writing in this different way means it’s even worse –
that’ll improve with time and practice, but it’s still going to be way easier
for my profs to read my typed work than my written work).
He also had me try out some electrical therapy, and I’m
probably going to be taking home a TENS unit in the near future to do that on
my own as needed. Now, there are several different types of electrical therapy –
it can be used to exercise muscles, to retrain things, and so on – but we weren’t
doing any of that. As he described it, it can be used purely as a pain
management treatment. Your brain can only focus on so much, and so you can
distract it from the pain by giving it this new and different and overriding
sensation of minor electrical stimulation. It doesn’t do anything to treat the
underlying condition, but it is an effective way to manage pain. So while we
were trying out grips and such, I had this machine hooked up to my arm. And
yeah, it definitely did help – it was set pretty low, and it didn’t override
the peaks of the pain, but it did override the rest of it, and I definitely
noticed when it turned off (it only works for a certain period of time, for
safety purposes). So, he’s going to let my referring doctor (my rheumatologist
at Vandy) know that we tried that and it helped and that I probably should have
my own unit to use at home, so that my rheumo can tell my insurance that I need
it and officially prescribe it for me, so that I can actually get that! He’ll
teach me more about using it, of course, so I don’t zap myself badly. (I’ll
admit, I was already wanting to get something like this for kink purposes, so
this is kinda killing two birds with one stone – and getting insurance to pay
for it. I’m being careful to not let that side of things influence my
thought-process on the medical side of things, though, and it really did help
and would be quite useful purely for medical reasons.)
And we went ahead and scheduled several more appointments,
including one with a physical therapist to get started on that end, which is
EXCELLENT AND SO RELEIVING AND WONDERFUL AND YAY.
So, when I got back home, I was feeling waaaay more hopeful
and encouraged about the future than I have in quite a while. I still am, in
fact, though the happy-good-feels wore off a fair bit as my arm started aching
again (seriously, why is it doing this and how can I make it stop?!), and as
those good feels wore off I realized that today was really quite exhausting and
overwhelming, with the pain and the panic attack and the new doctor
song-and-dance and the good-feels high and the post-good-feels-high crash. So
now I’m sitting and typing and trying not to think about my arm and being
tired.
Eh. I’ll take it.
