Memorial Day Weekend 2017 will
certainly be a memorable looooong weekend for me. It was the longest long weekend I have ever experienced;
I’m not even sure how to sum it up other than to say “Fuck Me!!!! I never want
to go through that living hell again”. Living with Chiari I thought I knew what pain
was, I thought I knew how to fight and smile through it like nothing was wrong. Well, my body had one other trick up its proverbial
sleeve, one I didn’t see coming, one that kicked my ass in ways I never dreamed
of. If I was given a choice between
kidney stones and what I went through Memorial Day weekend I’d chose the kidney
stones every single time. I know that by
now you’re thinking “enough already get on with the story Chiari boy” and “what
the heck could be so bad that you’d rather have kidney stones?” Sorry for not getting right to the point of
the story (ha, ha, no I’m not); I’m just trying to figure out how to present what
happened. Think of this as a “stream of consciousness”
writing exercise…damn-it now it’s just a stream of F-bombs I better cut off this
writing exercise.
Ok I’m back. I started this yesterday and took the night
off so I could come up with the best way to tell this story. It’s going to be a long one and will probably
ramble a bit, sorry
It all started on Wednesday May
24th. I had a follow up
appointment with my neurologist to see how the Botox was working and what my
pain levels were (this will be another story so stay tuned). My doctor askes that patients bring all of their
med’s with them, so like a good little patient I loaded all of my goodies into
an appropriately sized Zip-Lock bag and off I went. I bet you can see where this is going. Sure enough Wednesday night I grabbed my
little pill organizer to take my bedtime Lyrica and realized I needed to reload
it. Ut-oh no sign of my med’s in my
office –where I keep everything – or anywhere else in the house. That sinking feeling started to come over me
as I checked every cubby and storage bin in the van and there was no sign of my
med’s. Ugh I left them at the neurologist’s
office, and I cursed them for it. I mean
why do they have people with brain problems bring stuff with them that they
will most likely forget to take back home with them? At this point there was no panic, I knew I’d
be able to call the Thursday to make sure they found my baggie and then I could
make the half-hour drive pick them up.
I called Thursday morning and got
the “Office is Closed” message, I could feel the panic begin to wash over me,
but I pushed it away. They have weird hours
because the Doc has to make rounds at the hospital so I called back Thursday
afternoon and heard the message again, my heart sank. I convinced myself that perhaps they were
always closed on Thursday, but I could feel the panic really taking hold. Thursday night is when the hellish symptoms began
to kick in with my jumpy legs and arms keeping me up all night. Friday finally rolls around and they are
still closed, at this point the panic got the best of me and I was freaking out. All I could think was “I’m so fucked”. You
see Lyrica may be a “non-narcotic” pain agent that also calms muscle spasms but
the withdrawal symptoms are “hell on earth”.
Most people take the 75mg tablet a few times a day so there isn’t much
if any info on what happens when you stop taking it. I take the 200mg tablets 3 times a day so
when I stopped taking it because I was out my body began to react and it really
really sucked. By Friday afternoon every
muscle in my body hurt, my legs began their spasm dance and I couldn’t stop
sweating. Another sleepless night as my
legs tormented me and it felt like it was 100 degrees in our bedroom even
though we keep the AC at 72 at night.
Saturday was more of the same
except the muscle pain changed. It began
to feel like my arm and leg muscles were trying to tear themselves from the
bone, and my joints began to hurt. Every
movement, every step resulted in a searing pain I never want to feel
again. Luckily I’m highly trained at
hiding the degree of pain I’m in so I think I was able to keep the kids from
knowing how bad it was and I did my best to do whatever the family wanted to
do. Saturday night was a replay of the
previous two nights, tossing and turning and legs jumping, not even sleeping
pills helped me get to sleep.
Thankfully sleep found its way to
me Sunday, I fell asleep on the couch that afternoon. According to my wife and daughter my legs
were going crazy the whole time. Sunday
evening we went to our friend’s house for a BBQ. All I had to do was carry a tray of
watermelon from our house to their house which is only two houses up from
ours. That tray made my elbows and
wrists feel like they were being pulled from my body, by the time we got to
their house I wanted to scream and maybe cry a little bit but I was able to
shove the pain down and pretend I didn’t feel like I wanted to curl up in a
corner and rock myself to sleep. I’m
sure I was an absolute blast to be around that night, but hey I tried. Even worse than the pain was that there was
all of this delicious food and I had zero appetite. I was hoping beer would distract me from my predicament
but all that did was make me feel like crap – so sad.
Ah Monday…All I could think about
was that I was one day closer to Tuesday and picking up my Lyrica and getting my
life back. There was also a bit of
terror that kept rising within me that maybe they were closed for the entire
week for vacation. We went fishing with
our friends Monday which at first I dreaded because I was in so much pain, but
it turned out that the constant help required by our kids trying to fish kept
my mind off it. By the end of the day I
was starting to feel human again, still in a lot of pain but not as much as the
last few days. Maybe it was because I
knew – make that hoped – that I only had to get through one more night of crazy
jumping legs and arms and painful muscles.
Tuesday…Woohoo!!! I was never so
glad for a long weekend to be over and to be back at work. At exactly 9:00am the doc’s office called to
tell me that I had left my med’s there.
I so wanted to say [sarcasm on] ‘no shit, I never noticed’ [sarcasm off],
but I said thank you and told them I’d be over later to get them. I spent the rest of the day totally distracted
and praying for time to speed up so I could get there and take my Lyrica. It
was like I was some kind of fiend waiting for my next hit. At
last I was able to break away from the work day and go get my med’s. As soon as I could I downed the first Lyrica
of the day, I’m pretty sure I heard angels singing as I swallowed it. By the time I went to bed my trip through
hell was over and I immediately fell asleep, again I think I heard that choir of
angels singing me to sleep. From now on,
the neurologist gets a printout of my med’s or maybe empty bottles because I
forget everything unless I set a reminder on my phone or a Post-it note in my
office. I also learned that if they ever
want me off the Lyrica they will have to ween me off of it because cold-turkey
might kill me next time.
I have a whole lot of news and
catching up to do so there will be another post shortly.
