Category Archives: Uncategorized

That B word…Birthday? Better? Blood?…It’s Blood. And P.S. Plasma, too

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It’s my birthday this month. I’m turning 28.

I don’t really like my birthday. It’s like oh look time keeps passing and you’re still sick and your life still doesn’t look anything like you hoped it would and also you’re older so now it just stings more that you don’t have any of those things you want in life…but yay happy birthday.

One year older, still sick, and usually sicker than the year before.

But this year is a little different.

Don’t get me wrong, I’m still not stoked about the getting older thing. I’m trying to be more like my brother in this area. My brother is the most laidback person I know, which is either wonderfully refreshing or terribly exasperating, depending on my mood. He turned 30 this year and when you ask him how he felt about it he just shrugs. The other day I was telling him that I wasn’t feeling thrilled about turning 28 when he sagely asked me how I felt about turning 27, 7 months, and 3 days. I of course said I didn’t care about that and he then asked why 28 was any different.

Well, fine, big brother, be all annoyingly chill about everything why don’t you and I’ll just stay here and have this existential crisis on my own.

Okay but as I was saying this year is a little different. I’m still sick, but, I’m not sicker than last year. Not only that but I’m actually better than last year.

I am always so hesitant to use that B word because it’s like a starting pistol in the race of jumping to conclusions. You say “better” and people hear “all better.” They assume better-the-end-point as opposed to better-that-relative-place-that-is-anything-but-a-fixed-point. Illness and better are two concepts that are so congruent in our minds that it can be hard for people to wrap their heads around the idea of being better than before but also still being really sick.

But with that disclaimer in mind, yes, I am turning 28 better than I was when I turned 27. And for the first time in I-don’t-know-how-many years, I’m not just hopeful that I will be able to say the same thing when I turn 29, but I actually see it as a realistic possibility.

Although there are a lot of different elements at play here, I owe part of this improvement to one specific treatment, and so I actually owe it to all of the blood and plasma donors out there.

I know I haven’t shared many health specifics here in recent years, but we have figured out that I have an autoimmune disease, and for the last year, on and off, I have been receiving a treatment called intravenous immunoglobulin (IVIG), which is a blood plasma product made from pooling the antibodies of blood and plasma donors.

When you donate blood, your donation is separated into red blood cells, platelets, and plasma. Plasma is the liquid part of the blood that contains all the proteins, including antibodies. Some of that plasma is used directly for plasma transfusions, and some of it is manufactured into immune globulin products for IV or subcutaneous use. Plasma can actually be donated on its own and more frequently than whole blood donations can be made. If you live in the U.S. you can even be paid for your plasma.

e602afd2-49a7-458e-9e30-186e0c0fad35I don’t know exactly how IVIG works when it comes to autoimmune diseases, because medicine doesn’t even know, but it somehow stops my immune system from attacking cells in my body that it shouldn’t be attacking. It’s not a cure, rather an ongoing treatment, and not an easy one, at that. The side effects are sometimes as bad as, and at times even worse than the symptoms we’re treating. 

But as a result, for the first time in close to ten years, my overall quality of life is improving instead of worsening.

I am so grateful I don’t even know how to put it in words.

I am also terrified. Because there is a global IVIG shortage right now. Because demand is outpacing supply. Because every day I go online and see another person talking about how their treatment has been cancelled. Because I don’t know if one day that will be me. Because the last time we stopped my IVIG I lost all of the progress I had started to make. Because I don’t want to go back to where I started. Because even though my everything now is not at all what it used to be, I don’t know how I will get through losing everything. Again.

I hate that there’s nothing I can do about it. Because the only way to increase supply of IVIG is to increase blood and plasma donations.

And I can’t donate blood.

I always wanted to. I signed up to donate during my first semester at university, but that is the semester I got sick and never got better. That is when, unbeknownst to me for more than nine years, I developed the autoimmune disease I’m receiving IVIG for today.

And just as I hate that there’s nothing I can do about it, I also hate asking for help.

Yet here I am, asking, because I can’t donate blood or plasma.

But maybe you can.

Before you feel the need to justify to me why you can’t be a blood donor, please please please, you don’t need to! I’ve spent the last decade woefully saying, “I would if I could but I can’t!” every time I hear or see a commercial calling for blood donations, feeling the need to explain myself anytime anyone shares a post about it. I know there are so many reasons, including reasons beyond just strict ineligibility, that keep people from donating. You do not owe me an explanation.

However, if you’ve ever wanted to be a donor…have ever thought about being a donor…are a registered donor who has been meaning to make another donation…or are right now considering it for the first time, I encourage you to please take some action! Even if taking action means just starting by learning more on the Canadian Blood Services website. (I don’t know how it all works in any other country but I am confident that Google can help you!).

And if you already are a donor, please know how grateful I am to you. I am grateful to you every time I get to eat a little bit of something new, even if I feel sick afterward. I am grateful to you every time I get to delight in playing with my nephew, even if I am too tired to move for the rest of the day. I am grateful to you that when I turn 28 this month I will have something I actually want to celebrate.

I am still sick and I am still in pain, but in my spirit I feel more like myself than I’ve felt in a really long time, which is a kind of healing all on its own. And for that I am so grateful.

To past, present and future donors, all I can say is thank you.

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In memory of a kindred spirit

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I feel incredibly lucky to be able to say that I didn’t lose my first grandparent, my mom’s dear dad, until I was 25 years old. Not many people can say that. And I didn’t just have grandparents that were still alive, but I had them in my life, nearby. Nearby enough, anyway. My entire life my grandparents have lived an hour away from me and five minutes from each other, so sure I didn’t see them every week and maybe not even every month, but they were there, especially when it counted.

I know how lucky I am.

Still, I am incredibly saddened that two years later I’ve lost another one. My Grandma. My dad’s mom. My proper, quirky, practical, stoic, thrifty, particular, gem of a grandma.

As a kid, it’s hard to understand what a chronic illness is. Terms like autoimmune disease and arthritis don’t hold much meaning. What you are able to understand is that between your grandma and your grandpa, your grandpa is “the fun one.” He’s the one who takes you out for long walks on the beach in front of their house and builds forts with you out of driftwood. He’s the one who teaches you to play croquet on the grass. He’s the one who makes silly jokes. Your grandma spends a lot of time sitting in her chair.

And as a kid, what you are able to understand, is that between your two grandmothers, your grandma and your grandmere, your grandma is harder to relate to. She cares more about manners and is more set in her ways. She’s the one who, when you’re eight years old and lying on the floor in a long old-fashioned dress-up skirt, tells you the importance of being ladylike and sitting properly. She shows less emotion and is more stoic, so you never really know what she is thinking or feeling. A blend of how she was raised, a childhood on the farm, and her generation.

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All The Thrift Shop clothing

She is also thrifty. Very thrifty. She volunteers in a thrift shop, after all. The Thrift Shop, as you grow up calling it. Most of what you wore in your early years when your parents didn’t have much money came from your grandma through The Thrift Shop. And most of your family’s housewares. And this thriftiness combined with her quirkiness always makes for really interesting gifts from The Thrift Shop. Like the Christmas morning you open up a plush cat with masking tape on the paw reading “press here” that when you press it the cat meows calmly for 15 or so seconds before screech-meowing while the whole cat starts shaking, a feature which startles you so much that you throw the cat out of your hands. Your grandma is also completely taken with the idea of free toys and games in cereal boxes, and so she buys cereal just for the Tony the Tiger watch or the computer game inside. These freebies show up as part of birthday and Christmas gifts. You aren’t always sure what to make of your grandma’s gifts but by golly you always phone her to thank her, because that is the kind of thing that is very important to her. You do the same after every Valentine’s Day card and Easter card and birthday card, always with a $35.00 cheque inside.

As a kid, you love your grandma and you know that she loves you, too, but you also under-appreciate her in the way that most kids do their parents and grandparents.

And then you’re not a kid anymore.

You’re an adult now, and you get sick and your life falls apart. And you all of a sudden find yourself far less busy and scheduled because of the whole being too sick to do much of anything thing, so you make more of an effort to keep in touch with your grandparents. Your grandma has email now, and an enthusiasm for email joke and cartoon forwards like none other, so you start emailing your grandma.

And as an adult, now that chronic illness, autoimmune disease and arthritis are no longer just medical terms but the terms written in your own medical chart, you start to see your grandma differently. You know why you have so many memories of her sitting in her chair. You recognize how much pain and fatigue she must have been in all the time. You are able to see how important spending time with you and your siblings and cousins was to her because of the effort it must have taken her to just be present. You start to understand her in a way you wouldn’t be able to without that shared experience of living in a body that doesn’t follow the rules.

And you come to understand that she is able to understand you in a way that so many people just can’t.

You know how important education is to your grandparents. Higher education is part of the culture of that side of your family. You know that before she was married she studied to be a PT/OT. Then there’s your grandpa the dentist. Your uncle with the physics PhD. Your other uncle the doctor. Your dad with a master’s in engineering. Your siblings and cousins all with their degrees. And because education is so important to them, you know that when each of your siblings and cousins finished their degrees your grandparents gave them $1000 as a congratulations.

Then one day you get mail from your grandma and it’s a certificate she drew up herself congratulating you on graduating from The School of Hard Knocks. With a $1000 cheque. Because your grandma just gets it. Because she lives it herself.

When it comes to her own health your grandma is quite stoic. She doesn’t complain. You remember your grandpa, your mom’s dad, always telling you about running into her in the grocery store and how she would always give the same answers after he asked her how she was doing…”oh you know, I’m fine”…”well now, I’m okay” and you realize that you have the same go-to answers.

Over time your grandma lets down her guard more and more in her emails. She talks about pain and frustrations and sadness and challenges. You swap doctor and hospital stories. You know she got sick in an era when talking about being sick wasn’t as accepted as it is today. There were no online support groups and she didn’t have all the information at her fingertips like you have to learn as much as you do about what’s going on in your body. You feel sad for the isolation and loneliness she probably experienced because of her health. You wonder what treatments would be available for her if she got sick today. But most of all you feel privileged to be on the receiving end of whatever it is she tells you.

She ends every email by wishing and hoping you have better health coming and you just know how genuinely she means it. But she doesn’t need or expect positive health updates from you for the sake of making her feel better about what’s happening to you. She is one of the few people in your life who you don’t need to perform for.

Your grandma is still your grandma but now she is also your friend.

When your grandparents are in the process of moving out of the house they’ve been in for forty years, a very involved process because in your grandma’s own words it would make for a good episode of hoarders, you get an email from your grandma about her childhood doll. It’s falling apart but it’s really special to her and a mother of three boys, she wants you to have it. It’s important to her that this doll be loved. You promise to love it.

Then one night at 10:30pm your dad asks if you’re still up and if he can call you. Your grandma has had a really tough year, in and out of the hospital. And your heart starts pounding because it already knows what your dad is going to say.

She was proper and quirky and practical and stoic and thrifty and particular about a lot of things. And she was a gem. A hidden gem.

I am proud of the ways I am like her, my grandma-isms. And I am grateful that my illness allowed me to get to know her and appreciate her in a way that I wouldn’t have otherwise. And even though I haven’t even been an aunt for six months yet, I’ve already sent my nephew cards for his first Valentine’s Day and first Easter. And I plan to never stop.

I will miss you grandma. I will think of you every time I watch curling and every time we dry our clothes outside on the rack you picked up for us at the end of someone’s driveway 35 years ago. I will remember you whenever I see a cuckoo clock or a singing Christmas tree or an owl anything, and every time I eat a marion berry…which may be never again because I’m not even sure they exist anywhere but your backyard. I will smile every time I go to my sister’s house and see your old dining room table with the five chairs, five not six, because why buy a sixth chair when you’re only a family of five? I will love your doll always.

I love you, grandma. You were a kindred spirit.

Thank you for being my friend.

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Sunflower Number 38

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It started with a couple of potted plants on my balcony. They made me happy every time I looked out my window so I wanted a couple more. And then a couple more again.

There are now eight pots filled with various mostly-shade-friendly plants on my balcony. And they delight me. Sometimes on sunny mornings I’ll go sit cross-legged in the patch of morning sun and drink my morning coffee with my plants. Well, I don’t actually drink coffee, but it feels like what I imagine a morning coffee ritual feels like, just sans the coffee.

The reason I’m telling you this is so that you understand that I’ve become somewhat of a plant lady this year. I saw somewhere that plant lady is the new cat lady and I’m so on board for this because I am a cat lady in so many ways except for one key problem: I don’t like cats. They scare me. Also I’m allergic. But plant lady is something I can get behind.

So I’m becoming this plant lady.

I come by it honestly because my mom has a beautiful garden. But when I asked her towards the end of May if she was planting sunflowers this year she realized she had forgotten about them. And so I, in my new role as plant lady, decided I would make the sunflowers happen.

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Plant lady. Overalls. Sunflower seeds.

I bought some seeds, I put on my overalls, and on May 22nd I planted 40 sunflower seeds.

Yes, I have overalls. I learned this year that overalls are back in style which is most exciting because I went through an overalls phase as a child, around 6 or 7 years old, and I am sad about the lack of overalls in my life the past 20 years. My overalls phase was followed by my cargo pants phase, however I am not sad about the lack of cargo pants in my life since then.

Alright. So plant lady. Overalls. Sunflower seeds.

The packet said it would take 7-14 days for them to come up but you guys I must have planted magical seeds or else wearing overalls is the secret to gardening because they started coming up on May 26th!! 9 of them!! After just 4 days!! There were 27 the next day, 35 the day after that, and by the 29th, 37 of the seeds had sprouted. I was not expecting such success!

I was pretty ecstatic. And totally enamoured with my little sunflower sprouts. Anyone reading this who also follows me on Instagram can attest to this because I was posting a lot of story updates about them. Still am, actually.

So my sunflowers. All 37 of them.

Except!!

On June 2nd, when those 37 sprouts were now a couple of inches tall, guess who started to pop up out of the soil?? Sunflower Number 38!

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I was having a horrible day that day. It was a Sunday and I was barely able to move due to severe side effects from an infusion, but when my mom told me she thought she saw another one sprouting, I slowly and painfully hobbled my way outside to see for myself. Sure enough! There it was! In all its unexpected glory! 38 out of 40 seeds? That’s a 95% success rate!

(These detailed field notes are courtesy of the photos saved on my phone thanks to the previously referenced Instagram oversharing.)

I almost cried in excitement. I might have actually teared up. It might have actually been from the pain. I know it will probably sound a bit weird, but I was so proud of that 38th seed. I was proud of all the seeds-turned-sprouts! But especially Sunflower Number 38.

When I realized how proud that last sprout made me, it gave me pause.

Was I supposed to see myself in that last sprout? Making its way more slowly than everyone else, at times not sure if it would ever find its way out of the dark soil, fragile but feisty…? Nah. This is not one of those it’s-okay-to-go-at-your-own-pace-don’t-worry-about-what-anyone-else-around-you-thinks-or-is-doing posts.

The pause was because I realized I was more easily proud of a sunflower seed-turned-sprout than I usually am of myself. Not just more easily proud, but maybe even prouder overall.

I’m a very loyal cheerleader. For other people. I’m not just talking about the big achievements and the milestones, but the smaller things, too. Like when someone prioritizes their mental health or makes time to learn something new. I love when the people I love do cool and meaningful things, of large or small magnitude, and I don’t care about the pace they’re going at or what the people around them are doing.

But when it comes to my own life, I do get caught up on the timeline and the dark soil and the fragility. I am bothered by the slow pace and distracted by the seemingly bigger and better things the people around me are doing.

And I can’t help but wonder if maybe you’re the same way? Maybe we’ve all forgotten how to cheer for our own new leaves, and our own tiny but steady increments of growth, or even just the fact that we managed to avoid getting eaten by squirrels for one more day.

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Sunflower transplant day. All grown up moving from the planter box to the ground.

I said this was not one of those it’s-okay-go-at-your-own-pace-and-don’t-care-what-anyone-else-around-you-thinks-or-is-doing posts, and okay maybe it is a little bit, but not because that’s what Sunflower Number 38 did. It’s not about how and when Sunflower Number 38 made its way out of the soil, it’s about how proud I was of it for doing so, how much excitement I felt watching it. I want to start seeing myself more in the way that I see Sunflower Number 38, and Sunflowers Number 1-37, and the people in my life for whom I am a cheerleader.

Everyone deserves to have someone root for them and celebrate with them the way I root for and celebrate with my plants. And we owe it to ourselves to be that someone.

And so I’m going to make an effort to be my own proud plant lady, to look at myself more the way I look at my sunflowers. With care and concern and wonder and excitement. And pride, even if it seems like all I did was not get eaten by squirrels.

Because that’s enough.

I am enough. You are enough.

Seed to sprout to stalk. At any pace. We are always enough. And we see that in each other.

So now let’s put on our overalls and get some dirt on our hands.

And start seeing it in ourselves.