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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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.

My friend Mike started a thing called “Mirror Mantras”, where he posts a positive or motivating phrase on his bathroom mirror to keep him inspired throughout the week. Here’s mine for the week:

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A year or so ago, I combined some words to invent the term badassmatic. Simply, a badass living with asthma. To be used in a sentence: Steve is the epitome of badassmatic.

Today, let’s define it. It is an honour to be the first ever guest-poster at my friend Steve’s blog Breathinstephen!

Please join me over there for some conversation on music, asthma, owning your health . . . and badassery!

Friday: The light on the answering machine flashes. One week and one day since blood work. It’s kind of surreal knowing that the substance flowing through my body keeping me alive could also be cluing us in to something.

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The hesitant call back to the doctor’s office to find the line busy. The second call after the agonized waiting. Getting put on hold.  The continued waiting. The click back on the line.

“She [the doctor] wants to talk to you about your blood work.” Kathy the phone lady [who may actually be Cathy, who knows] tells me.

I’ve learned from some of the best. I am not waiting a minute longer. “Is it the thyroid or the iron?” Cutting to the chase.

Both.”

I close my eyes as I sigh and mumble something to Kathy that I can’t remember.

The iron I was sure was eventually coming. Five years into becoming a vegetarian who doesn’t pay a huge amount of attention to nutrition like I know I should, it’s whatever. I’ll go in and get the lecture next week. I’ll work on it in the meantime.

The thyroid flag is probably hypothyroidism, of which I have some symptoms after consulting Dr. Google on hypothyroidism. Lazy butterfly-looking gland, what did I ever do to you?

So what happens? I get the results. I make the follow-up appointment for next Monday as it is not urgent. And then the classic tiredness that is hallmark of both anemia and hypothyroidism hits. I sleep eleven hours on Saturday night, nearly four and a half of them with my iPod on playing Brian Strean. I realize all the “random bruises” probably weren’t so random. I realize there is probably more than meets the eye. Isn’t everything?

It’s not a big deal. It’s just a pill a day. I think we caught it early, but I have no idea. Of course, at times over the last three days I’ve just wondered “what’s next?”. And for the millionth time “why?”. It’s that “one more thing”.

Even though I know I can do this, it’s that all-shaking addition . . . “for the rest of your life”. It’s that part that sucks the most.

edit: it’s been a few years since i wrote this, but all other thyroid checks have come back as normal–I’m not sure why the blip in my lab work, but as of my last T3/T4/etc. check in February-ish 2014, things looked fine.