Is it really a compliment?

I ran into someone I hadn’t seen in months and as part of the usual catching-up chit chat they asked if I had lost weight. When I replied that I didn’t know they said it looked like I had.

It was clear they meant it as a compliment.

All the way home I was hoping they were wrong

Because I don’t have a scale, I pulled out some jeans from high school and tried them on. They shouldn’t fit me now, and thankfully they didn’t. I breathed a sigh of relief, put the jeans away and went on with my day.

What my acquaintance didn’t know was that I had had bloodwork done earlier that week and was a bit anxious about it. The immunosuppressant drugs I’m on can have nasty side effects so my doctor screens regularly to make sure everything’s working alright.

One thing we screen for is lymphoma and some of my blood cell counts were not the numbers I had expected to see. I’d googled it and determined that as long as I wasn’t seeing any symptoms (which I wasn’t) I was fine.

Unexplained weight loss was one of those symptoms.

That’s why the comment on my weight had made me nervous.

Thinness is so often equated with health and, as I’ve written about before, that is so untrue.

Instead of making me feel good and confident, their comment had just stressed me out for the rest of the day. They had achieved the opposite of what they intended and had no idea. Next time I hope I have a better answer.

Actually next time, I’d rather skip the conversation altogether. Coming out of this pandemic many of us are not the same size we were going in. Rather than commenting on someone’s body shape or size can we all agree to just say “it’s so nice to see you!”?

This is a recent photo of me standing in a field, wearing my favourite outfit: a lightweight sweater I made and a refashioned dress I’ve had since high school that always fits me because it’s basically a giant sack.
This is a recent photo of me standing in a field, wearing my favourite outfit: a lightweight sweater I made and a refashioned dress I’ve had since high school that always fits me because it’s basically a giant sack.

The Gift of Blood

We dragged a patchwork blanket onto the front lawn and had a “read under a tree” date. Ever since she was little my daughter has loved to read under trees, and since being inside is getting a little old after two months of quarantine, this was a perfect afternoon activity.

Patchwork blankets lie on the grass.  A book, some pop cans, and a small bag with  medical tubes coming  from  a syringe also lies on the blanket.

We read a chapter of Peter Pan out loud (so good! If you have never read it you are seriously missing out) and then settled in to our own individual books for a bit of quiet. She opened a favourite comic book and I returned to Fearfully and Wonderfully: the Marvel of Bearing God’s Image. Every chapter gives me so much to think about, it’s taking a while.

This day the chapter was about blood.

Blood is something I am well acquainted with as a diabetic. Until a few months ago (when I got new technology) I would prick my fingers up to 10 times a day to test the glucose in my blood. The sight and taste of my own blood is familiar and reassuring. It’s part of me and interacting with it is no different than washing my face or brushing my hair.

Diabetics everywhere rejoiced when a recent emoji update included a syringe and a bright red blood drop. Finally one of the biggest parts of our daily routine was represented in this new language on our phones.

A close up of a book in the foreground , a person’s body and hand in the background.  Medical infusion tubes lay across the book.

When my sugar is high my blood feels thick and poisonous. I ache all over. My movements are slow and exhausting. I know from reading about diabetes that when my sugar is high my blood can become acidic. I know from experience that if it gets high enough it makes my kidneys hurt.

All of this makes me appreciate the blood that flows through me, keeps me alive, and warns me when things are wrong.

When I underwent plasmapharesis to stabilize my Myasthenia Gravis before surgery I saw my blood in a new way. With tubes in each elbow I watched dark red blood come out one elbow, enter a large loud machine, and return to my body through the other elbow. Large glass bottles, filled with plasma the colour of champagne, hung at the end of my bed and were quickly drained as they were added to the mixture going back into me. When I got up after three hours I’d see the bag of my old plasma hanging above the head of the hospital bed. Cloudy, like homemade apple juice with particles still in.

I hated that process more than anything in my life and it made me appreciate my kidneys and the way my body cares for my blood on a daily basis.

A close up of a book with the headng “Transfusions.”  Medical infusion tubes lay across the book.

As I lay reading in the sun on the lawn I came to the middle of the chapter where Dr. Brand starts to write about transfusions.

He explained how transfusions work. He explained how vaccinations and inoculations work. That they take the “blood of an overcomer” and introduce it to a sick body to lend it the strength it needs to fight infection.

A close up of my side.  Needles can be seen taped to my hip.  I am holding and reading the book “Fearfully and Wonderfully: The Marvel of Bearing God’s Image” by Philip Yancey and Dr. Paul Brand

As I lay in the sun I was very aware of my infusion kit lying beside me, of the needles taped to my bare skin where my shirt had risen up, of the antibodies pumping slowly into me. Other people’s blood, processed and refined, mixing with mine. Lending me the strength to live.

I am so grateful for those who willingly give their blood for people like me. They don’t know the stories of everyone who may benefit from their gift but they recognize the powerful potential of their blood, not just for themselves but for others. And they give freely.

Amazing.

Green leaves on tree branches against a blue sky.  The sun shines through.

Social distance

The world is weird right now. Covid-19 is tearing across the planet and I wasn’t anxious about it until I heard the stories out of Italy.

Doctors are being forced to choose who to save and who to let die because there aren’t enough ventilators for everyone who needs one.

And that scared me.

Illness isn’t so scary to me because it’s a constant companion and I expect it. I’ve been sick, I am sick, I will be sick. And the medical system has fixed me, it keeps me alive, and I’ve always just had this faith that it will be there for me in a crisis.

So hearing that health care systems are overwhelmed and are needing to triage patients was a shock. I know I would not do well in a triage situation because I have underlying health problems that would make recovery take longer than an average person.

And I support that. If you could save two or three people in the time it would take me to get off a ventilator, then don’t give it to me. Star Trek gets it: “The needs of the many outweigh the needs of the few, or the one.”

And at least I’m prepared. I live daily so that if I die I’ll have no regrets. I try my best to prepare the people around me to be alright without me.

That said, I’d rather not go now. As much as I’m proud of how well I’ve taught my daughter about life and death and faith and God and kindness and love, the simple fact is that no child is okay when they lose a parent young.

So we’ve been social distancing this week. We play card games, read Harry Potter, watch movies (I signed up for Disney+ yesterday), clean light switches and knobs, bake bread, walk outside, and wash our hands a lot.

And it’s fine. I know a lot of people are finding it stressful to stay in their homes so much but I feel like chronic illness has prepared me well for this.

I had two years off work when I was too unwell to do much so I have mastered the art of occupying not only my time, but also my daughter’s, without going out.

Like the homeschooling parents I see on social media who are clearly unfazed by having their kids home, I see people with chronic illness similarly comfortable with the task of isolation.

We social distance all the time. We self-isolate routinely out of necessity, to protect ourselves from all viruses, and burnout, and spaces that are inaccessible to us. This is not new to us, it’s just on a larger scale.

I think that this experience will generate more understanding and empathy, going forward, for people who are immunocompromised and always vulnerable. The ones who routinely feel the way the general population does right now.

I’ll be glad when this is over and life can go back to normal. I miss McDonald’s and thrift stores and seeing my friends, but for now I’ll enjoy my kitchen and yarn and books and my family. I have all I need.

A candle burning in front of a fireplace    In the glas you can see a reflection of me sitting on the floor and a laundry basket full of clothes in the background
I made candles the first day we were home and then we used one for a St. Patrick’s day liturgy shared online by littlewaychapel.

Pain

Labour pain was like fire.

Tooth pain strikes all the way down to my toes.

Hitting a nerve during my infusions takes my breath away.

Aseptic meningitis is the most horrific thing I’ve ever felt.

But my most common pain is the ache of Myasthenia Gravis.

Most medical articles on the internet say that there is no pain caused by MG but ask any myasthenic and they’ll tell you otherwise.

That skeleton-in-jello/listing-barn feeling isn’t comfortable. I feel my bones floating in the goo and the joints are unsupported. I bend over and every piece of my spine clicks into place as I move. My muscles strain to hold it there so I don’t end up on the floor, a pile of odd angles.

The joint pain is sharp, the muscle ache is dull, but neither is that strong.

So it’s not severe but what gets me is the pervasiveness and persistence of the pain.

It is all of me, it is relentless, and it is exhausting.

I’m physically fragile. I move slowly and minimally. I wince with each bend and reach. I breathe deep to move through the pain.

I’m fragile emotionally. Days of this put me constantly on the verge of tears, except for the few moments when they spill over. I’m disappointed at not being able to bear this better, to push through it more smoothly, to overcome it.

Because it’s not so bad, objectively. I’ve had worse and worn it better.

But life is not experienced objectively. The constant affront wears me down.

So I switch from regular life mode to recovery mode. I stay in, cancel engagements, slow down.

My daughter and I read library books in bed rather than play games. I rely on my husband for even more of the household chores.

I lay on the floor and stretch. I take hot baths and read. I increase the frequency of my medication, setting alarms so I never forget. I add extra painkillers into my routine.

I make appointments for chiropractic treatment and massage.

I take care of this old house that is my home, and I know that the pain will pass. It always does.

An 8 year old blonde girl stands in front of the ice in a skating rink. She is wearing skates, an aqua sweatshirt, and a hockey helmet with a wire face mask.

My one outing last weekend was to tag along while my husband ran a few errands and then watch skating lessons. I used an electric cart in the store, I trailed way behind my family on our way into the rink, but I got to see this lovely girl on the ice.

Resolutions and intentions

A notepad on a table reads (in a child’s handwriting) ELLA’S resolution: read more books, do more yoga

Same, girl. Same.

Everyone’s taking about resolutions and intentions for the new year and I don’t usually make any because it seems arbitrary but I guess it is a good excuse to reflect and tidy up your life so here goes.

First, a resolution – I want to read at least one (preferably nonfiction) book each month. Last year I only read about four so this is a big increase but I think it’s feasible.

Second, an intention – or maybe it’s more of a mindset shift. And to be honest I’ve already been working on it for a couple months but I’ll continue to work on this over 2020 until it takes hold.

I want to change the way I think about my body.

I often refer to it as a prison and that’s because it’s truly how it feels. I’m stuck in this thing that hurts me and limits me and controls large portions of my life.

I know that words have power though and if we change our words our thought patterns will follow so instead of a prison I will think of my body as an antique house.

There’s nothing you can do to improve a prison when you’re a prisoner inside. You’ve been defeated and you have no control. But an antique house is something you can take ownership of. You can restore the finishes, replace the broken parts, spend some money and time and effort and end up with a place that’s quirky but quite comfortable.

When I get frustrated by my pain or limitations I’ll think of this old house as needing some repair and instead of giving up and eating a bag of chips, I’ll drink some more water and do some stretches.

Instead of getting mad that I’m moving slow and then being cranky at the world, I’ll lay down and get some proper rest.

I’ll wrap myself in warm blankets. I’ll take my meds on time. I’ll investigate alternative therapies. I’ll eat healthy foods. I’ll shower more so I don’t feel gross.

I’ll do what I can to restore this old house. It’ll never be perfect but it’s mine and it will be good.

Tools

Woman pulling a walker on wheels loaded up with hot dogs and bags of chips at an outdoor event.

At a community bbq last year one of the organizers thought I was so cool for using my walker to carry a family’s worth of hot dogs and she made me pose for the event photographer.

I remember a quote by Jesse Ventura going viral (before that was a thing) when I was a teen – “Organized religion is a […] crutch.

I heard a podcaster recently say “I used humour, not as a crutch but as a tool.”

Both quotes, although addressing very different subject matter, imply that a crutch is a negative thing –

as though using a crutch is an admission of weakness,

as though it’s something to wean yourself off of as soon as you’re able,

as though the crutch causes the weakness.

Full length selfie in a mirror in a hotel lobby. A woman stands with a cane.

in 1999 when the Ventura quote was popular I didn’t know enough to recognize the ableism behind the metaphor. Now, 20 yeas later I see it plain as day when someone specifies “not at a crutch but as a tool.”

What is a crutch if not a tool?

It’s definitely not a failure, although it felt like it when I finally gave in and admitted that I needed mobility aids.

My internalised ableism told me that I was too young, too independent, too strong to need those.

I would only use a cane around the house. I would avoid going out if I couldn’t walk independently. I would limp and stagger rather than lean on a stick.

A candid photo from behind of a woman walking with a cane. There are children walking in front of her. Outside in the sunshine.

It didn’t take too long to realize the foolishness of that position and now I’m never without my cane.

But again I had to overcome the ableist voices in my head (and sometimes in the world around me) when I graduated to using a walker.

I would only use it on my worst days, as an absolute last resort.

But after feeling the effects of a day spent with my walker – legs supported, back not screaming in pain, arms not exhausted from carrying my bags, the satisfaction of getting things done and still having energy when I got home – I quickly learned to love it.

Now I take it whenever it’s more convenient than not. It just depends on the day and what I’m doing.

I am less disabled when I have the right mobility aids with me.

A full length photo of a woman from behind as she pushes a walker down a large hallway. Photo was taken in the main atrium of the national Art Gallery of Canada.

There’s no way I could enjoy places like the National Gallery without my walker. (Also IKEA, the mall, any museum and Home Depot.)

I don’t have many photos with my cane or walker because I’m usually taking photos at a closer range. On the rare occasion when someone snaps a picture of me from a distance my cane or walker usually make it into the shot.

And I am always glad because in those photos I look like me.

Fully.

Needles (again)/SCIG

If you’ve been here before, you know I love my needles.  You’ll also know that I have many tricks that help me manage my Myasthenia Gravis.  But I haven’t written in detail about the biggest one yet.

For the first two years that I had MG I received monthly intravenous immunoglobulin (IVIG) infusions at the hospital.  Those two days spent sitting in the medical day care unit meant that I had three good weeks of movement and energy.  But as I went back to work, it was hard to schedule two days a month to sit in a recliner hooked up to tubes.  Factor in the IV Benadryl that immediately knocked me unconscious (meaning I got nothing done during those infusions), the achy flu-like symptoms that followed for the next three days, and the two rounds of asceptic menengitis and after two years of IVIG I was ready to try something new.

My doctor and I talked about subcutaneous immunoglobulin (SCIG) infusions I could do at home and it sounded like a perfect fit.  I’m already familiar with subcutaneous infusion from the insulin pumps I’ve work 24 hours a day for the past 18 years and I have no problem inserting my own needles.

So for the past two years SCIG has become part of my routine.  Twice a week I run an infusion.  I draw up 60 ml of immunoglobulin, which is a blood product containing other people’s antibodies, into a giant syringe (which make great bathtub toys afterwards) and connect it to a valve.  The valve controls how quickly the liquid pumps into my body.  I close it completely to start and then gradually turn up the speed as the infusion progresses.

I connect the valve to an infusion set which consists of three long tubes with needles at the end.

I load the whole mess into a spring loaded pump. Once I prime the tubes I insert the needles manually.  In the beginning I used my abdomen but it changes the tissue and makes my body feel different – softer, squishier, and more wobbly.  I didn’t really love the jelly belly I was getting so now I infuse into the back of my hips, love handles and bum

It takes between 3 and 6 hours to run its course – depending on how fast my body is absorbing the fluid and how high I set the speed. I have a little backpack to carry it around so I can do it at home while I watch tv and knit, or at work while I’m at my computer or in meetings, or while I’m running errands around town. I love that it’s so portable and that it gives me complete control.

Asked my daughter to take a photo for this blog post. Head chopped off, feet chopped off, but she got the infusion kit which is all I really asked for so, success I guess.

My chart

This post is brought to you by the pain in my back during a fancypants gala event with my husband’s work. I’m laying on a church pew in the hallway while the party continues. I might as well write.

Last week I had an appointment with my endocrinologist. Usually I get bloodwork done one week prior so we can discuss the results, I bring a week of glucose readings written out to examine, and I carry a list of various other questions. This time, due to various life circumstances, I showed up almost empty handed. And that was fine because my endocrinologist is phenomenal.

She wrote me some prescriptions, completed the paperwork so I continue to receive government grant money (have I mentioned that I love the health care system here?), and said it was fine for me to go down to the lab after our appointment to get that blood work done.

I thanked her and said I’d call her secretary in a week to get the results.

And then she changed my world.

She told me that the Ottawa Hospital has started using a program called MyChart. Patients get an PIN from the hospital and enroll online. That sounded pretty good so I set it up before I left and logged in online a few days later.

I saw my most recent blood work (not great but okay) and then I scrolled down and realized I could see every piece of information that the hospital has written about me over the past year.

I saw the records of all my IVIG infusions and all my plasmapheresis treatments. I saw the results from every time they did blood work. I read assessments done by physiotherapists, respiratory therapists, neurologists, haematologists, immunotherapy doctors, anaesthetists, surgeons, and the pathology lab.

I read a minute by minute account of what happened during my thymectomy in January and as I was reading about all the manipulation my body went through while I was unconscious I though it was no wonder I was so sore when I woke up. They cranked my body into an optimal position for surgery using an inflated bag and various other props. There were multiple steps to removing my thymus and although I only had a few steri strips on my outer incision my insides were covered in stitches.

Picturing myself positioned like that, exposed, intubated, and with my eyes taped shut, I felt very vulnerable. I closed the website and went back to work.

Over the rest of the day I was haunted by that sense of exposure, invasion, and vulnerability. But that faded as I realized how grateful I was to have access to all that information. And then I felt empowered.

More empowered as a patient than ever before. This is a huge step that the hospital is taking. The former hierarchy of doctor patient relationships is being replaced by a more equal, lateral, relationship. By giving us access to our information in such a transparent way they are explicitly stating that we are partners in our own health care.

I love it!