“and i’m stuck in this f**king rut . . .”: another hospital story.

Though music often offers me an unfailing sense of hope, while I ended the last post writing that way, I couldn’t feel it.

That post was my pacification for the time being–days in the making, but in not wanting to write about, yet again, spending another ten hours in the emergency room.

Wednesday night, I grabbed two of many permanent markers out of a new pack on my bedroom floor–not knowing how much I’d need the three words I wrote on my arm the next day. After talking with my primary care doctor’s assistant, based on a totally resting heart rate in the high 90s, we were told to go to “the nearest ER” (we chose the second closest). The meaning of these words on my arm just intensified a thousand times as I focused on them on yet another ride to the hospital.

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By the time I got to the ER at St. Boniface Hospital (a deviation from the last three ER visits, while not the closest hospital we got the okay given they have a significant cardiac problem, just in case), at triage my heart rate was above 150 [which is an improvement over 160 and 168 the last two times].  The triage people were also extremely thorough getting my history down. I was charted as having “hemodynamic compromise” (which is the big fancy medical term for the fact that I’d lost a lot of blood and my heart was having to work really hard to actually use what was left inside my body).  I got sent back to the waiting chairs for a total of five minutes, and then carted off to EKG in a transport chair (once again trying to convince them I could walk, and them refusing to let me). In reality, the only person who got into the ER ahead of me this time was a person who had been flagged for stroke protocol. So, really, that is never reassuring.

Following the EKG, they transported me to a treatment room, where the nurse tried exactly one time to get an IV started, failed, and called a nurse named Matt in to deal with me. Matt was awesome and managed to simultaneously hold my hand while jabbing me with needles. He got the IV in and did a blood draw. The doctor (aka Dr. Cool Shoes) came in at some point when Matt went off to find something, and when I asked if I could go home, he said no ;).  While I was talking to Dr. Cool Shoes, Matt finished stabbing needles into me [at least I was distracted], and they sent a sample off to the lab to check my hemoglobin, then got me hooked up to a bag of fluids in the interim.

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Eventually Dr. Cool Shoes returned after what felt like forever [the other hospital is smaller and their lab is way quicker].  He reported that my hemoglobin was down to 64, informed me that I must have been bleeding a lot [thanks for informing me–this is exactly why I did not trust the gynaecologist’s assistant telling me that I was having a “normal” withdrawal bleed from the hormone pills–my hemoglobin on Monday had been 83–fortunately, upping the pills calmed the bleeding down a lot] and that they were moving me to the back for another blood transfusion. Also at this point, Dr. Cool Shoes allowed me to put my t-shirt back on, so I was much happier than I was in the gown (I’ve noticed that once one person frees you from the gown, nobody else asks any questions about your lack of gown).

During these ten hours in the ER, I artfully mastered escaping to the bathroom while the IV was unhooked (which combined with that I was no longer wearing the gown that was three sizes too big for me, made this so much more efficient–the fact that the IV pump was attached to the bed and not to a pole also probably helped with this. [I’m also really low maintenance, considering I got unhooked after the first unit of blood, and the nurse told me “Just stop by the nurses station on your way to the bathroom and I’ll flush your IV”. Except after that they proceeded to make me wait a freaking hour for my next unit of blood. I get it, they were low on staff and had to put a PICC into a guy with a spinal cord injury who came in with a UTI, but I mean . . . an hour?)

At this point, I watched the Dear Jack documentary, because that’s all I do in the ER of course (well that and post pictures on Facebook).

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They actually dumped the two units of blood into me each over an hour, so the transfusion part didn’t take as long as it has previously (they did my last transfusion really quickly, too). Had I not waited for an hour between and over an hour for my labs at the end, I would have been out of there in way less than the ten hours I spent there.

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My earphones barely ever leave my ears–spent a lot of time listening to I Swear This Place is Haunted by A Skylit Drive this time.

This is after unit 1, on my long wait. Just with one unit of blood on board and the fluids, you can see that my lips are pinker than in picture 1.

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Fun fact: KVO on an IV means that the bulk of the stuff is in, but it sends you teeny doses of whatever is still in there, like saline, just to keep the vein open–stands for Keep Vein Open.

When the second unit was done, my heart rate was down to 120. Unlike the other hospital, apparently these people didn’t seem too concerned about this because they let me go home anyways–they gave me the results of the blood work (hemoglobin back to 86) and told me the doctor said I could leave without checking again (I didn’t realize this until I was in the car on the way home, but whatever, I wanted to be out of there.

The last two transfusions have been flawless. Third time’s the charm–I woke up the next morning feeling nauseous and with a headache, took an Advil, and went back to sleep. Then I woke up again feeling more nauseous, and puked. The nausea lasted a few hours, but I didn’t end up throwing up again which was good. Concerned that my heart rate went up again and I might be having some sort of transfusion reaction, my mom and I called the nurses at HealthLinks. Gail was awesome, and basically they triaged me over the phone. With a couple holds for Gail to talk to her supervisors about what to advise me to do, she said I could stay home but if anything changed I needed to call them back and they’d re-assess me over the phone. My heart rate was only a little high, so I likely would have had a long wait if I had to return to the ER anyways according to Gail.  By early afternoon, I’d managed to eat some pizza [totally curative!] and by the evening I was feeling a lot better.

Saturday was a really hard day for other reasons. We went out to the cabin, which I thought would distract me and be a good thing. Instead, I think I finally ended up feeling all of the things I’ve just been surfing past in the last five months. I spent five hours having some sort of breakdown and crying for reasons I couldn’t even figure out. I can’t even say I felt any better afterwards, but I totally could not calm myself down. (My buddy Steve, who seriously just knows exactly how to help me, was telekinetically sending me Ativan and hugs. Which made me laugh, but I think nonexistent Ativan worked ;)).

It was a really shitty afternoon. In the midst of it, I tweeted “I’ve been trying to be okay for five months, and all the effing not okay caught up with me.”

And all of this, especially the words from my friend C, meant so much:

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I’m emotional and sure as hell irrational . . .

emotional breakdown, brian strean

Yesterday was a good day. I shared my doctors appointment game plan for today with Steve, and had a pretty chill–but normal–day. My heart rate is still fluctuating, which is driving me bonkers [who the hell wants to go from 80 beats a minute–which is a bit higher than my Scientific Principles of Fitness and Conditioning lab normal–to like, 140, and then back to 100, and then surely back down to like 85 just to make me crazy].

Today was d-day. I had every intention to rip my doctor to pieces. And then didn’t. My doctor was SUPER apologetic and I didn’t even have to give her shit like I intended [#1 on my list read: Why the fuck was I not contacted about my ultrasound results? How is this acceptable?]. I left “fuck” out. She just apologized multiple times and said “You’re right, it’s not acceptable, I’m sorry.” And she sounded like she felt really bad, considering the answer to “How are you?” was “I’d be a lot better if I hadn’t ended up in the ER again on Thursday.” Because after three really good weeks and another half of a decent week, it’s really hard to accept not okay again.

Turns out, as we predicted MONTHS ago, I have a small fibroid or a polyp having a party in my uterus. Hello, not okay, the only thing that is allowed to grow in there is maybe a baby like YEARS down the road. So, because things are controlled on the hormone pills, we’re sticking with this dose for the time being, and I have to get in touch with my gyn doctor about scheduling surgery to get that thing out of me [the growing thing, not the whole organ, of course]. And then hopefully that stops this whole bit where my uterus tries to kill me three months in a row.

Otherwise, we briefly discussed the lasting post-transfusion weirdness going on in my body, i.e. how my heart rate keeps fluctuating for no reason. I’m really not too far out from this transfusion, and considering I’ve had three of those in as many months, it’s not surprising that eventually it would be a harder recovery. For example, Steve told me on Friday when I wasn’t feeling well that GI issues aren’t uncommon post transfusion–ANTIBODIES! Also he pointed out that I’ve at this point had my body’s whole blood volume replaced by donor blood. Can you say holy shit? Also THANKFUL.

So, there’s a road ahead of me. But hopefully it leads to resolution and better health. Much better.

Once again, so many thank yous. To my blood donors–to all blood donors. To the staff at St. Boniface Hospital, including Dr. Cool Shoes (whose name I unfortunately did not note); to Matt, Student Nurse Danielle, and the other nurses who took care of me. To my parents for dealing with me wrecking their holidays, and the rest of my family for dealing with all my shit. To Steve who dealt with my 20 e-mails from a country away [including “should I steal this stethoscope?” “It’s cheap, not worth it.”] and totally just knowing the right things to say; to everybody who put up with my ridiculous texts. To my coworkers for once again having to deal with me screwing up the schedule. To every single person who has taken the time to send some love via Facebook in one way or another. And . . . to everybody who has been a part of this journey. My brain doesn’t work to note every single person who has made an impact, but if you’ve been around . . . you have.

“this guilt feels so familiar” / “i need light in the dark”

My body has spent the last five months throwing curve balls at me.

Curve balls that are only really caught after they’ve already hit me hard, and the time of impact involves yet more to actually catch it.

A week and a half ago, I got to take my first break from the hormone pills, then start up again on the lower, normal dose. After three days off, and three days back on, I knew things weren’t stellar, but I was like look, your body has been through a lot in the last few months–let it adjust. So I called the doctors’ office on Monday just to be sure things were okay. His assistant agreed that it was probably a normal response, but she scheduled me a same-day appointment anyways.

I am thankful I went with my instinct and went in. I’m pretty sure I said about three sentences and my doctor immediately increased my pills back to twice a day for another two months, confirming my thoughts that we lowered my dose too early. Gave me the real lowdown–you might bleed through this whole pack of pills. We might need to do another D&C. Sent me to the lab for a CBC.

Gave me yet more reasons to trust him.

Trust is something I realized two weeks ago that I’ve been having a hard time with lately–trusting my own body, primarily, and trusting the people taking care of me. Every time I think something is getting better, things crash out around me–every time I think we are making a good treatment choice, things fall apart.  Because as much as this whole thing can mess up my body, it can totally mess up my mind, too.

I am ready to stop feeling like a grenade waiting for the next explosion. I am ready to not only feel like I can trust things, but like people can trust me. Because this last one? That curve ball hit me hard.  Even if totally irrational, there’s an overwhelming guilt that can go along with a variety of medical problems–and when my problems mess up somebody else’s plans–like it has done this time–this guilt feels so familiar.

I’ve discussed the 2013 soundtrack. Invariably, I put a song in there, and I let the playlist cycle through, washing me through all of the moments of this year. And this time, the guilt kicked in and I could barely get a new track in there fast enough.

The guilt, even over what I cannot control? I feel it..

i’m lost at sea / the radio is jammin’ / but they won’t find me / i swear it’s for the best / and then your frequency / is pulling me in closer till i’m home. / and i’ve been up for days / i finally lost my mind and then i lost my way / i’m blistered, but i’m better / and i’m home.

i will crawl / there’s things that aren’t worth giving up i know / but i won’t let this get me / i will fight. / you live the life you’re given with the storms outside / some days all i do is watch the sky.

this room’s too small / it’s only getting smaller, i’m against the wall / and slowly getting taller here in wonderland / this guilt feels so familiar and i’m home.

i think i, i could use a little break / but today was a good day. / and it’s a deep sea in which i’m floating–still i seem to think that i must crawl

there’s things that aren’t worth giving up i know / when you can’t bear to carry me i’ll fight / you live the life you’re given with the storms outside / some days all i do is watch the sky.

[today was a good day]

watch the sky, something corporate

I have yet to reach that good day in this round.

The thing is though, without trying I found hope three minutes later when the first song on the soundtrack cycled up. Light in all the darkness.

But this? This makes me know it is coming–cycling back to fresh beginnings . . . someday.

there’s a lot that i don’t know / there’s a lot that i’m still learning / when i think i’m letting go i find my body it’s still burning / and you hold me down / and you got me living in the past / come on and pick me up / somebody clear the wreckage from the blast

i’m alive / but i don’t need a witness to know that i survive / i’m not looking for forgiveness / yeah i just need light / i need light in the dark as i search for the resolution

and the bars are finally closed so i’ll try living in the moment / till the moment it just froze, and i felt sick and so alone / i can hear the sound / of your voice still ringing in my ear / i’m going underground / but you’ll find me anywhere i fear.

[some stories i will never tell… and i’m almost home]

and you hold me down.

the resolution, jack’s mannequin

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finding the words

i try to speak but i cannot / words were harder than i thought / i tried to run to You but i’m stuck / and i can’t move / but i feel it in my veins / a change is taking place / breaking free the mould i’ve made / i’m starting to move . . .

love you back, addison road

I’ve been trying to find words to write, any words to write, for over a week now. I typically have no shortage of words, and yet, I am at a standstill.

So I write about having no words.

Writing, for me, has been as much therapy as anything. It’s a healing process in and of itself, it’s a healing process in reading back those words weeks, months, years later. It has been that kind of a process since I was nine years old. I write less so to write and more so to find something inside of it–inside of me–later on.  And when I feel like I have nothing to uncover–or nothing I really want to find inside myself–then I unfortunately shove it aside.

Yet, likely, in those moments, I need it then, too.

The stagnancy. The routine.

Things I do not like.

Maybe the words help me break free of that as well.

“some days all i do is watch the sky”

Some days, my day looks like this

running

But my night can look like this

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Maybe it’s because I ran around filming a video. Or inhaled a bunch of smoke all day drifting around with the breeze. Or sat around a campfire at lunch. Or maybe there’s seemingly no reason at all.

For me, the asthma monster-under-the-bed, I am lucky, doesn’t come around often. Maybe once a month, maybe less than that.  Most of the time, unless I’m really sick, it lurks from inside me slowly–waking up and not realizing my lungs are the reason why, usually wandering to the bathroom and back before laying down to realize “Hey, I’m pretty short of breath over here.”

Sometimes a couple puffs of Ventolin is all it takes for me to drift back to sleep.  Other times like the other night, I slip into some sort of autopilot while feeling a heaviness settled in my lungs: two puffs, fifteen minutes. two puffs, fifteen minutes, two puffs, fifteen minutes. Last night, it was after round three, or six hits, I fell asleep again.

The next day, still, can look like this (…okay, a little tired I guess!)

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It’s a mind game. It’s thinking I’m fine and when I’m least on my guard, the previous day somehow grabs onto me and shakes me back into it–in one of the ways I least want to be inside it.

this guilt feels so familiar, and i’m home / i will crawl / there’s things that aren’t worth giving up i know / but i won’t let this get me / i will fight . . . / you live the life you’re given with the storms outside . . ./ some days all i do is watch the sky

i think i, i could use a little break — but today was a good day.

watch the sky, something corporate