progress not perfection.

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 . . . “We’re standing on the ashes, with a clearer view and a new perspective.

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intention.

The last six weeks was, I am sure, more than enough to make me unsettled (in a not-good way).

Last week, the seventh week, was about reclaiming ground, becoming more settled in my body, knowing things are getting better.

Saturday . . . i had this feeling arise over me. For the first time in a very long time, I felt healthy. I have clung on to that feeling for the past 30 hours. (My lungs still don’t feel right, but hey, otherwise I feel good, I can deal with the lungs. I’m blaming the rain for that).

Finally feeling healthy, though, made me realize everything I need to work on. Things I have the energy to work on. Finally.

Physical Activity.

Exercise is a thing that suffered–which is also a thing that I’ve found keeps me balanced . . . contributing to the state of emotional unbalance on top of the obvious physical unbalance.

Exercise graph

Part of this dropoff was intentional. When my hemoglobin was slipping bad, I was intentionally not exercising beyond walking to and from the bus, because I didn’t want to contribute any to the state of dropping–the reality is, I’ve been sicker than I cared to admit since March. And I was trying to be proactive and my doctor was not engaging with me on working with me on that.

The other part is that I simply could not do things. I would walk home from the bus and have to take breaks because it was too hard–my heart would pound inside me with even small amounts of moderate exertion. I would get short of breath and it wasn’t the asthma. I was a mess for a lot longer than I admitted to many people, but what else was I supposed to do? I didn’t know better that what I was feeling would become as bad as it did down the road.

This, I need to rectify.  Back to paying attention to the fitbit, and doing some TribeSports challenges to bring my focus back to where it should be.

Nutrition.

It is not so much the fact of micromanaging the micronutrients that I need to work on, it is just simply making healthier food choices. Leaning away from all of the stuff that I know I don’t feel good from or about after eating, and having all that stuff on a less frequent basis. It’s a fine line, and I know myself–and I know that I have a hard time balancing this stuff in the most basic way.

Creativity.

Writing has for as long as I can remember been my release. I started journaling and writing lyrics/poetry in the fourth grade. These things have been the sole methods of getting me through so much of the tough stuff in my life.  2013, having the theme of Make Yourself, I want to expand on that. I’ve been trying to make a more focused attempt at journaling–“and i scratched these words / into a black notebook”.

Words have always been my weapon. Music has been a second.

Visual art? Even farther, yet still something I have gravitated towards and wanted . . . but seldom wrapped my fingers around.

Friday . . . I started to transform that with a quote inspired from one of Andrew McMahon’s tattoos.

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my intention / a bullet / my body / a trigger finger / . . . and my pen is a pistola.

my secret arsenal is an infinite, ageless inkwell / it’s a fountain of youth and a patriot’s weapon of choice.

pistola, incubus

I’ll be capturing that process on deviantART.

Balance.

I’ll be honest here. It’s a paradox: when my health is at its worst, the things that keep my body and mind balanced are the first to go in the effort to simply survive. I’m realizing now that this is incredibly backwards, yet . . . it feels incredibly necessary at the time.

when dark clouds cover the sky / like there’s no hope, You are my light / You tell me to live. / when i’m all by myself / and i’m scared about my health / You tell me to live. / and when You heal my broken wings / yes, You heal my everything / You tell me to live.

You tell me to live, the rocket summer

Be intentional.

This week . . . I am rolling back onto Operation Intention. Getting back to making better choices . . . for all of me. Body, mind and heart.

Recovery.

“i don’t wanna waste another minute here”

I want things to be looking up.

All Time Low . . . is helping me do that.

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I found Weightless on my iPod this weekend. I can’t say I hadn’t previously listened to it, but I hadn’t previously focused on it. Essentially, I then put it on repeat, because oh my God this is so much my life right now.

manage me / i’m a mess. / turn a page / i’m a book / half unread / i wanna be laughed at, laughed with, just because / i wanna feel weightless, and that should be enough.

but i’m stuck in this fucking rut / waiting on a second hand pick me up / and i’m over getting older / if i could just find the time / then i would never let another day go by / i’m over getting old . . .

maybe it’s not my weekend / but it’s gonna be my year / and i’m so sick of watching while the minutes pass as i go nowhere. / and this is my reaction / to everything i fear / ’cause i’ve been going crazy / i don’t wanna waste another minute here.

make believe / that i am pressed / that every word, by design, turns a head / i wanna feel reckless / wanna live it up just because / i wanna feel weightless, ’cause that would be enough . . .

if i could just find the time / then i would never let another day go by / i’m over getting old . . .

this could be all i’ve waited for. / and this could be everything, i don’t wanna dream anymore. . .

maybe it’s not my weekend / but it’s gonna be my year / and i’ve been going crazy / i’m stuck in here . . .

weightless, all time low

guest post! – a matter of parallel badgers

Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

—–

My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.

“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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