“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.

“i just can’t predict the weather past the storm”: another hospital story

can you tell me how this story ends? […]

and i feel like i’m a battle tank, but there’s peace for every pound of strength /  i’m waiting for the enemy, while she plugs my machines back in…

[…] i’d be lying if I said this was my plan […] / see I’m trying but I just don’t understand why i can’t predict the weather past the storm.

diane the skyscraper, jack’s mannequin

This is not the story I planned.

Unlike last time I ended up in the emergency room, I am struggling to make sense of this, or find any sort of silver linings in the situation. This time, through tachycardia, hemoglobin drops and another blood transfusion, I cannot make any sense of it at all. But, as there always is, there is hope.

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After Friday’s double-stick blood work, which measured a pretty good hemoglobin level.

I was supposed to get on a plane to California on Saturday morning. Friday night, knowing that things were definitely not right with my body, despite a freshly drawn hemoglobin of a beautiful 108, my mom and I cancelled my flight to San Francisco (with a lot of tears), and I was absolutely crushed. As I mentioned in part 1 of this saga, we know the root of the problem (super messed up periods–also if you are not into a bit of TMI, stop reading now) but not the cause of it. The first try to fix it, Provera, has only made things worse (this is where I should mention that I tried to get in touch with my gynaecologist last week because things were okay and I just wanted some direction. The issue was, he was not available all week, thus I had to solve problems myself. See also: not a doctor.]

I was experiencing significant tachycardia (high heart rate) on Saturday but I really didn’t realize how bad it actually was until I checked into the ER early that afternoon. My mom parked the car, I got out and walked into the ER (climbing a hill on the way). Vitals were done, bracelet placed on my arm, and the triage nurse said “Can I get a wheelchair out here?” My heart rate was 168 (and I tried to convince them I could walk), and I was promptly taken to the back, where blood was drawn, an EKG was done.

I spent the next 8 hours hooked up to telemetry (which meant my heart rate and oxygen saturation were measured continuously, and my blood pressure was automatically taken at regular intervals, which frequently made me jump). We did a couple walk tests around the ER to see how my heart reacted early on and to catch some arrythmias (fun), so basically things were going all over the place. Between my blood work at 9:30 AM on Friday in the outpatient hematology clinic, and Saturday afternoon, my hemoglobin had dropped from 108 to 88. Any hope of rescheduling my flight was ripped out of my hands as soon as I set foot in the ER.

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When the doctor finally came in (“Nobody’s seen her yet?! The chart says ‘Treatment in progress’!”), she ordered fluids to get my heart rate down, and an IV was started (where they gave me a wicked bruise).

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(Wouldn’t be an ER visit without giving the camera the finger, yeah?)

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Still looking pretty pink! By about 10:30 PM, my heart rate was down to 92 at rest, and they let me leave.

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Sunday morning, things had reverted to how they had been. My heart rate was still way too high at rest, and after procrastinating the inevitable a lot, a reading of 137 prompted a return to the ER. On the way there, I had this really weird feeling that my body was really hot, when apparently it wasn’t hot in the car–my mom dropped me off at the door to the ER, where I walked inside, and immediately walked into the bathroom and puked (I felt totally fine after that, so I am not sure what the deal was). My heart rate at triage was 160, and while they didn’t make me get into the chair this time, I got pulled from the waiting room into a treatment room really quickly. The electrodes from the day before were still stuck all over my chest and stomach, so I saved them some time and they hooked me back up.

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I was quickly hooked back up for another EKG with all the sticky things still securely in place, but they didn’t make me do any more walk tests. My heart rate spiked up a bit whenever I walked to the bathroom, but it came down pretty quickly.

The ER doctor on Sunday was a lot more conservative in his treatment, and a lot more thorough in his assessment. I was actually only monitored and not treated in the 6ish hours I spent in the ER. My hemoglobin was 79, so I was on the verge of being okay. I was given the option for transfusion or to simply go home without treatment. Considering I was still tachycardic and we had not yet addressed the cause of the hemoglobin drops in treatment, I opted to do the transfusion, however, I was also given the option whether to stay overnight or return in the morning to do the transfusion either in hematology/oncology or in the ER, wherever they had space. No decision needed, I opted to return home and to sleep in my own bed.  The doctor gave me the pros and cons, and it was a really hard choice to decide to repeat the transfusion. However, the ER doctor who treated me on Saturday night came in to see me when she saw I was back in, and she and the nurse who discharged me said that I’d made a good choice.

I went home for the night, peeled all of the electrodes off my body [the ones on my chest were easy to peel off, the ones on my tummy hurt]. Seriously, the amount of adhesive that pulls up when these things are removed is wild.

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Monday morning, I returned to the ER to check in for my transfusion. After a long wait, a volunteer kept asking the desk where I was going and when (sidebar: hot male nurse at triage. Bonus!), and they eventually got a move on.

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I ended up being transfused in the back of the ER with an awesome nurse named Alexa taking care of me. Alexa was an IV-inserting rockstar, and not only did she get it in on the first shot, it barely hurt worse than a blood draw. New favourite nurse EVER. She, like the ER doctor and the nurse the night before, agreed that I’d made the right choice about the transfusion.

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Four days later, Alexa’s insertion left very little bruising–check out this bruise from Saturday–a failed insertion attempt.

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The transfusion…

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(During these visits to the ER, I’ve learned to fix a bulk of my own alarms. Alexa wasn’t too impressed when I got tired of the IV beeping after the first unit and silenced the alarm :]. I was also fixing my own alarms whenever the SAT probe stopped reading on Saturday and Sunday by changing fingers, and I’ve mastered fixing occlusions. Oh, and no Lasix this time!)

During the transfusion, the nurse who triaged me on Saturday found me and checked in–she had been trying to figure out what happened to me [because “it’s not very often you see someone in their twenties with a heart rate that high!”], which was so sweet. All went smoothly with the transfusion, until the pump signalled the end of the second unit. Alexa came to check the IV . . . and the bag was still half full of blood! I’d been watching the minutes count down on the monitor, and I was so frustrated when she told me that my transfusion wasn’t actually over! She had no idea why the infusion stopped, but she got the remainder into me in record time (I had my celebratory cupcake too early, which was a downer!). One final blood draw, and I got to go home [via Starbucks, which is a thing–like wearing that t-shirt during–that I do following transfusions, apparently).

Check out these vitals (note that my blood pressure didn’t fluctuate much from the other days, but my heart rate is much lower. Yay for being young?)

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I’ve been running since a long time / I’ve been hiding from the truth / I been battered, been broken, been buried now and death proof / and i’ve been known to take a big chance / but i can’t waste another shot at redemption, no / i’m ready, don’t let me go passing through the wrong hands.

my confidence is in crisis mode / your fingertips, well they know the code / release me / take another piece of me and there won’t be another left / come on release me / take another piece of me and there won’t be another left unless you let go.

i’ve been waiting for the sun to shine / another winter ends / the winter’s starting over / we met beside a landmine waiting for the wind to blow / and i’m in trouble with these friends of mine / change was in my blood, i lost my sense of direction / i dragged us to the bright light / life was like a tv show.

[…] i’ll be nothing but sand falling down / through your fingers to the ground below. / i’ve been running, i’ve been running, i’ve been running such a long time.

release me, jack’s mannequin

When I thought it was all over, Sunday evening I experienced yet another bad bleed [sure, right after we put all that new blood in!]. My mom called the 24-hour answering service and my gynaecologist, who was on call, called right back. If the bleed lasted more than two hours, I needed to go to a different ER, if it subsided, he would see me the next day. Well, my mom didn’t listen to me OR the doctor, and carted me back off to the ER of the big downtown hospital, which was packed, smelled like booze, and was going to be an extremely long wait. Very soon after we got there, the bleed subsided, and after triage my heart rate was “only” 101. I managed to convince my mom to let us leave–it would have been, I am sure, 5-8 hours before I entered the treatment area, and I figured I was better off laying down where my heart rate probably wouldn’t be in the triple-digits.

I need to say RIGHT NOW, that my gynaecologist is friggen AWESOME. He walked in yesterday afternoon and said “Are you still bleeding to death? We need to get you fixed!” We had been trying to get this to subside without using combined hormone pills [oral contraceptives], because of my retinopathy, but at this point we have no choice–they are safe medications but not without risks. Bleeding to death, however, I suppose is also a pretty significant precursor to actual death, so that was our first step of the day.  After he examined me, he didn’t think there was anything abnormal, so the good news is that the hormone pills should get things re-balanced and it’s “just” a hormone imbalance causing all this. Then he did a minor, in-office surgical procedure that will hopefully alongside the pills lessen [and stop] the bleeding. I think initially he didn’t think I was going to get through the in-office aspect of it, because I was really shaky and kept tensing up, because he said “Okay, we’re going to try this, but I might have to get you in for emergency surgery tonight. Have you eaten anything today?” [I was like “Fuck, so now it gets serious? Have I not just been in and out of the ER all weekend?]. We kept going, though, he talked me through it really well, and apparently I did a lot better than most women do (and thank God, didn’t have to set foot in another emergency room).  My gyn is also super funny, so that made the unpleasant experience significantly better (“I had a hundred year old lady in here awhile ago! I was like, ‘If I’m a hundred, I don’t CARE if anything is wrong with me!'”). I also confessed that I’d screwed around with the Provera the week prior, because he wasn’t there to advise me–he was SO good about it–“Well, I wasn’t here and how were YOU supposed to know? It’s okay, we’ll get you fixed!”  Seriously, this guy might be my new favourite doctor.

So, it could be a bumpy road ahead, but hopefully we are on the right track to a resolution.

I fought  a war to walk a gang plank / into a life I left behind . . .

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I need to extend a huge thank you to the people who took care of me the last few days. I can in no way provide a comprehensive [or accurate] list of all of the ER staff who took care of me on the various steps in this journey–however, among them are “Dr. Dan”, Dr. Derksen, Susan – RN and Alexa – RN (Specialty Nurse – Critical Care).

An extended thank-you to Dr. Campbell from May’s ER stay, who referred me to hematology to ensure we are getting a comprehensive look at what may be going on in my body; as well as to all of the amazing Emergency Department staff at Seven Oaks Hospital who played a role in my care whose names I cannot recall amongst the chaos.

Thank you also, of course, to my friends near and far–especially Steve and Danielle for being unwavering supports–and to my family.

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The biggest thank you I have to extend, though, is the people who volunteer to donate blood. I have been blessed by this gift twice in five weeks, and to selflessly give a component of your own body to help someone you do not even know is extremely generous. These situations come with certain ironies, and this time, the irony is that it is National Blood Donors Week . . . and I could not be more thankful for people who make the choice . . . to give life.

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“no peace, just clicking machines”: the hospital story

Surreal. That is the only word I can find to explain the things that have occurred over the past few days. It feels like a long expanse of time from my life is missing, however, it’s that missing expanse that I find myself living in my head over and over again. The hope is, if I get it out here . . . I can get it out of my head.

For the previous week and a half, I’d been extremely tired and not feeling well, missed a lot of work and slept way too much. Constantly being grated on about my nutritional choices didn’t help, and frustration was setting in hardcore. After over a week off work, on Monday I finally had regained enough strength to return to work after seeing my doctors on Friday morning, who, instead of repeating the same old phrases of iron-rich foods, respectively a) said she would arrange for an ultrasound and b) started me on Provera to deal with my messed up periods which are the real root of the anemia issues. We’d try that course of action for the next three weeks, and re-evaluate. I got blood drawn like I have many times, and returned home.

Monday morning (May 6th), things had continued to go on the uphill and despite a crappy night of breathing and four hours of sleep, I went to work feeling okay. I was exhausted, but I was happy to be there and went through the motions like any morning, albeit with less enthusiasm. I came to school, and while I was hanging out in the accessibility office, I read the heartbeat skipping text conversion of a message from my doctor’s assistant: “I need you to call me as soon as you can.” I slipped out of the office and down the hall, where I was told “You need to go to the emergency room right away and tell them your hemoglobin is 56–you may need a blood transfusion.” My response was to ask if I could go to class, considering I’d gone to work that morning, and after checking with the doctor, I was okayed to go to class prior to going to the ER.

I calmly returned to the accessibility office and BBMed my boss, then once my paperwork in there was done I went to my mom’s office to let her know what was going on, e-mailed my friend Steve and BBMed my friend Dia. While I went to class, my mom went back home and packed my stuff up, picked me back up at school and we went to the hospital.

I was triaged (and got a mask to wear, because I was so uninterested in getting germy sick in that ER), and the 2.5 hour wait began. I was called in, re-assessed, and stuck twice before an IV was accessed (that shit hurts. I was biting the inside of my mouth–I really thought it was not going to be a big deal but . . . wow). Blood was drawn from my other arm, and IV fluids were started. I saw the awesome Doctor Tim who complimented me on my Chucks and commented on the fact that my iPod, video camera and phone were all siting on my bed, and waited for blood to arrive–over the weekend, my hemoglobin had dropped further, to 52, while it should be over 120 . . . so while I was feeling fine, I was in pretty bad shape. My heart rate upon my first check once in my little ER room was 137–in most of my fitness labs last term, my resting heart rate was in the 70s.

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Not impressed with this situation.

Eventually the nurse said that the blood should be arriving in about 20 minutes. Finally, they hooked me up, we waited the initial 15 minutes to ensure I wasn’t having any sort of reaction to it, and then my mom left for the night. Because my blood counts were so messed up, I was sick, but I was feeling totally fine and was constantly using my phone, iPod or iPad to keep myself entertained, and video blogging the hospital stay as it progressed (near the end of this post). By about 9 PM I had given up on the idea that any sort of sleep might happen between the frequent vitals checks and the old lady yelling in the room across from me. I plugged my earphones in and watched the Dear Jack documentary once again as fresh, packed red blood cells united with the ones already in my body.

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Not impressed with this situation, but even after the saline alone, my nurse commented that my colour was already better.

Sometime during the first transfusion, around 11:30, I heard the nurses doing a shift change and talking about me (I was “19” due to where I was located). Soon enough, someone crashed through my door with another bed and I got transferred out of the main ER by a couple hospital people who chose to crash through my doorway with a bed–I was just like “Just leave it there, I can walk!”. After feeling like I was in some kind of movie as they not-so-gracefully careened my bed to the back portion of the ER, I found myself in a much better room in a quieter back area, still my own room with my own bathroom, which I was happy about.

Eventually, the last bit of the blood was run through with more saline, and sometime soon after I was given a shot of Lasix through the IV, left on the saline for awhile, and told to rest. Hahaha, funny joke nurses! Reality: there is no rest on Lasix (a diuretic), and when the nurses say “This will make you pee” is the understatement of the year. Within about five minutes of the first dose, I was, I swear, going to the bathroom every five or ten minutes (I was like “REALLY what is the point of giving me IV fluids if you are simultaneously just making me pee it all out?!”). I think my nurse was actually slightly amused. Eventually the nurses came in again and started the second bag of blood (which is this big important production involving turning the bright light on because one of them has to stand there holding my arm and reading all of the information off of my bracelet to the other nurse reading the matching information off of the bag of blood).

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Throughout much of the time I spent in these hospital beds, I played the same three things on my iPod:

  • Caves – Jack’s Mannequin [for about eight hours straight]:
    • “No peace / just clicking machines […] the walls caved in on me.”
    • “I lay still, still I’m ready to fight”
    • “The walls are caving in / Doors got locked for sure / There’s no one here but me . . .”
    • “I fought a war to walk a gangplank / into a life I left behind / windows leading to the past / think it’s time I broke some glass / Get this history off my mind.”
    • But really, it is all about the piano–you’ll know the part I’m talking about.
  • Diane the Skyscraper – Jack’s Mannequin:
    • “But I don’t have the energy / So she plugs my machines back in . . .”
    • “And the late night TV talks to me, bout God, but God why can’t I sleep / As she plugs my machines back in.”
    • “I’d be lying if I said this was my plan / but we are all in this together / See I’m trying but I just don’t understand / Why I can’t predict the weather past the storm.”
    • “And I feel like I’m a battle tank / But there’s peace for every pound of strength.”
  • and the Matthew Good album Hospital Music.

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Sometime around 2 AM the night shift ER doctor came and talked to me, and was a total sweetheart. She told me she was going to refer me to hematology (outpatients) to do testing to rule out a bleeding disorder (like Von Willebrands), and sat down on my bed and told me about how she has two kids with hemophilia. Really, if a doctor is going to come visit at 2 AM, it helps if they are personable–though I only saw her for a few minutes, she was fantastic.

Between the vitals every half hour and the next shot of Lasix (I tried to argue with them on it–“I don’t want that again. You told me to rest and I just ended up going to the bathroom every five minutes, how is that even productive?”), sleep was non-existent. Even more-so when at 4 AM old-man-next-door was yelling about his rain gauge and getting angry with the nurses. Somewhere after 4:45 AM, the nurse came in to do vitals and took the SAT probe away from me because apparently she didn’t like me playing with it. Also sometime around here I also caused an “upstream occlusion” in my IV by getting tangled in the power cord (serves them right for giving me the Lasix :]).

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The early hours of the morning . . . 4:19 / 4:45 AM

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The third and final bag of blood was started sometime in the early morning hours, and when it was finished I actually got unhooked from my IV for a bit–pretty soon after this, my morning nurse, Spencer, came to give me another shot of Lasix, and I told him “My arms are free now, let’s have a dance party instead of the Lasix, okay?” (He didn’t oblige, by the way, and I swear they have a script because he was just like “This will make you pee”, and I was like “Understatement of the year, my friend.” The first dose was the worst, but I still was going to the bathroom like every twenty minutes on the subsequent doses, which was still ridiculous but not as ridiculous. Granted, I was just happy not to be stuck to the pole anymore, because that thing had shitty wheels and made everything so much more confusing.

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I actually don’t hate this picture, because I actually look fairly healthy in it. Also i was happy because I was untethered.

I thought once I’d gotten unhooked and shot up with Lasix one final time that I was free. I honestly did. My last heart rate that I’d asked about was 94 and I was like “Oh good, look, time to go home.” The lab came and drew blood . . . and then Spencer re-appeared and hooked me back up again! Needless to say, I wasn’t impressed.

Soon enough another doctor came in to tell me my hemoglobin was up to 113, that I just needed to ensure I kept my appointment with my gynaecologist on May 22nd and keep taking my iron pills, and I could go home. Spencer came back and unhooked me from the saline and pulled my IV and I was free to go.

While my hospitalization wasn’t in the least torturous, and full of really good people taking care of me, it should have never had to happen to begin with. I’ve been expressing concerns to my family doctor for a year and continually requesting regular hemoglobin draws, and those values have been having ups and downs, even when I was compliant with treatment. The purpose of having a doctor is so they assist you to make the right decisions about how to deal with what is going on in your body . . . not simply facilitate the making of requests. The big issue finally came, obviously, within the last couple weeks, when between April 12th and May 3rd my hemoglobin dropped from 8.3 (up from 6.something) to 5.8. It should have never had the chance considering I was seeing my doctor almost monthly to get to the point where I could barely get out of bed for five days, and it should not have taken a week to see my doctors after the fact–I am still angry about that. If you know me, you will know that I am all about self-advocacy, but the reality is, in order to put up a fight . . . it is imperative to be moderately healthy–you have to have the energy to fight. Denial is a typical and important yet also potentially detrimental coping mechanism, and I’ve experienced that deeply in this experience–I am okay, it’s not that bad. I spent an entire weekend telling my mom that I didn’t need to go to the hospital when I couldn’t even get out of bed without my head hurting. Denial is easier than feeling all kinds of the crazy things it’s possible to feel when you’re sick . . . because it’s less emotionally draining when your body and mind are already exhausted.

There came a point, which I didn’t realize until I got home from the hospital, where I simply went on emotional autopilot simply just to keep surviving, and really, it felt a lot better when I started feeling things properly again. And I think that came with the return to energy, too. Because for way too long, I’ve been coasting. I’ve been trying to survive and my body wasn’t healthy–yet, I was trying but without the right tools. Which is futile. Regrets are futile, also, however–I’ve learned that if this ever, God forbid, happens again that I’ll go to the hospital when things start getting bad and not lose a week over my life . . . 22 hours was quite enough, but I’m back to where I should be . . . and working at getting better everyday.

I was blessed this week by the words and support of dozens upon dozens of my friends both near and far, and I am so thankful for these people–sharing their stories, and sending me e-mails, texts, tweets and Facebook messages continuously in the hours during and following my time in the hospital. Those things made the length of the days and nights both at home and in the ER more tolerable. That support means everything, and to everyone who reached out at all hours, I am beyond grateful for your support.

But more than that, I was for the second time in my life blessed by the gifts of people who I will never be able to thank, for helping to make me healthy by choosing to donate blood. I received a transfusion early in my life as a premie, and donated blood once in high school–I very much hope that I can stay healthy enough to be able to donate blood again soon. The irony is, I had a blood donation appointment booked for May 2nd that I couldn’t attend, and days later I was on the receiving end. To all of you who donate blood regularly: thank you. I cannot convey my thankfulness enough, nor can I express to you the awe I feel in the fact that I feel so healthy now. Thank you.

There are additional points of irony in this story. Monday when I was at work (fully believing I was perfectly healthy) my boss told me I looked like I’d lost weight (which I figured was just one of those things people tell you when you’ve been sick a week and thought nothing of it). I walked out of work and tweeted this Jack’s Mannequin lyric “She thinks I’m much too thin / She asks me if I’m sick“, and thought nothing about it–I tweet lyrics all the time (it turns out I have lost fifteen pounds, which is crazy, but since I never weigh myself I don’t know the timespan that occurred within).

The real irony comes in two places, the first the obvious that I was still super sick. The second piece of irony is, the album that song is on, Everything in Transit, culminated recording the same day lead singer Andrew McMahon was hospitalized for anemia then diagnosed with leukemia–the album has all kinds of random hospital/doctor references that were really foreshadowing to what would happen next in Andrew’s story (later on, the album ended up coming out the day he got a bone marrow transplant)–my tweeting of his lyric foreshadowed the next 24 hours in a similar way as his own story was foreshadowed by the album, which is really surreal.

In the darkness, blessings, however, shine through. And two things remain in everything: perseverance and hope.

And, the story continues . . . and I am very thankful that it does . . .

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When I think I’m letting go, I find my body it’s still burning

[…] I need light in the dark as I search for the resolution.”

–the resolution, jack’s mannequin

only part of the story: nutritional deficiencies

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I’ve had a really hard week, both physically and emotionally.  While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.

I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine.  The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.

Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers.  I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.

And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days.  I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.

I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow.  I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.

My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.

Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.

I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making.  But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.

Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.

Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.

When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.

And it is much easier to lay that blame on yourself . . . when others are laying it on you too.  When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.

I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.

And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.

I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy.  But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?

The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.

Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.

Support doesn’t have an agenda.  Neither does friendship or love.

 

Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.