Happy Hopeful New Year

HOPE

Just over three months ago I wrote a post called Waking Up about how after months of living in a nightmare things were finally getting better. But then about two weeks later one of my doctors ended up stopping the treatment most responsible for that improvement to see what would happen without it. What happened is that it did not go well and I pretty much fell back into that nightmare.

It sucked. It sucks, actually. Because it still sucks. Because I’m still stuck in it. And we’re figuring it out but it takes time and work, and redoing work I already did. Which sucks.

Sigh.

I’m not ending this year the way I thought I would be, but it’s the end of the year nonetheless, which means it’s time for my end-of-the-year-thoughts blog post on this mostly-abanbdoned-throughout-2018 blog.

This year my end of year thoughts are a lot of what ifs.

What if my doctor hadn’t stopped my treatment? And what if it hadn’t taken three quarters of a year for that treatment to start in the first place? What if instead of assuming all my symptoms to be malnutrition for all those years doctors had believed me and recognized that something bigger was going on? How much nerve damage could have been prevented?

What if medicine knew nine years ago what it knows now? What if that doctor was right when she said that had I received the right treatment right away that I might be mostly healthy today? What if she’s right when she says it’s been too long and we might not be able to really help much?

And, shamefully, what if I lived somewhere else? What if I lived where I had access to the sub-specialists and the sub-sub-specialists and even the sub-sub-sub-specialists that just don’t even exist here, but that would know best how to help me?

It’s just been a hard year.

With unnecessary suffering. I’m pretty accepting of everything; I don’t think of myself as suffering every day. I’m coping. I’m managing. I’m doing my best. I’m living. And sometimes there is suffering and it’s just part of it all, but this year a lot of it was unnecessary, which is harder to accept.

So anyway.

That’s where I’m at on this last day of 2018. Some really positive end of the year thoughts, hey?

But I’m writing it all out so that I can let it all go.

Well, so that I can try, anyway. I’ve been carrying all that around in a bulky, awkwardly shaped, terribly heavy suitcase and I don’t need that kind of baggage in my life. So at the very least the process of writing it all out is akin to putting some wheels and a nice pull handle on that suitcase so it’s easier to cart around. It’s a start.

But really, there’s nothing I can do about any of those what ifs so what’s the point of being bitter about them? I can’t change the past. There’s nothing I can do about nine years ago. Or nine months. Or nine days. Or even yesterday. All I can do is try for a better tomorrow. Except not literally tomorrow because I’m pretty sick right now and that doesn’t change overnight. Probably not nine days from now either. Nine weeks…eh…but a better nine months from now? Very possible.

And as frustrated as I feel, as awkward as that suitcase of what ifs is, it’s not the only piece of luggage I’ve got with me. There are some other suitcases of blah. But then I have a backpack of gratitude, and I don’t mean the kind of backpack you use for school, I’m talking about one of those big backpacks you use to…to backpack around places. (A backpacking backpack? Evidently I’ve never backpacked anywhere.) I’ve also got a duffel bag full of things I’m looking forward to. As well as a backpack, but a regular one this time, of things I want to learn and try. A hat box containing my sense of humour (Why a hat box? Um, why not a hat box?) And three giant suitcases full of yarn. Obviously.

Metaphorical me is clearly very strong and coordinated, carrying around all that luggage, which is funny because real life me gets tired reaching for my phone and half the time ends up dropping it.

Just kidding. My imagination skills are not that strong so metaphorical me is kind of a disaster, too. But we, and by we I mean the real life and metaphorical versions of me, are lucky enough to have some pretty rad people in our lives. Metaphorically, they carry all my luggage around for me. And push me in my wheelchair through the airport. I’m not sure how we ended up in an airport but that’s where we are apparently. Maybe we’re going backpacking! Wow, metaphorical me is so adventurous.

As for real life me? Those pretty rad people help lighten the load of the bad stuff and make the good stuff more good. Whoops…better is actually the word I’m looking for. They make the good stuff better.

Okay so I didn’t really know where this post was going when I started it but I’m cool with where it’s ended up. But also that got kind of complicated so thanks for trudging through.

Anyway. My point is…I don’t even know anymore.

My point is that 2018 was not ideal. It really did not go very well for me. But I still have hope.

My point is that I’m still so hopeful. I don’t even know for or about what really, just that after all this time I still feel hopeful. Because after all this time I still choose to be hopeful.

I know that life doesn’t magically reset at the start of a new year, but I’m hopeful that in a year from now I’ll be writing about how 2019 was the year things finally changed for the better, remembering that better doesn’t always look the way we expect it to. And if not? Well then I’m hopeful I’ll be able to say the same thing again a year from now.

So yeah. I’m hopeful. Sick and tired and frustrated. And hopeful. Because all of the stuff in all of those various pieces of luggage, and all of the people helping me carry it, when I add and subtract it all up, what I’m left with is hope.

I hope that you have hope, too. If you do, I hope that you can share it with someone who might need it. And if you don’t, I hope that maybe when you do some suitcase math you’ll be able to find some hope of your own.

I hope to see you here again soon.

And. Of course.

Happy New Year!

Happy Hopeful New Year!

IMG_0260

It’s been a long time since I showed my face here, I realized, and it’s nice seeing faces sometimes so here’s my face. Also my sister’s face.

Befriending my body

There is an enzyme in your body called carbonic anhydrase. It is involved in the interconversion of carbon dioxide and water to bicarbonate and hydrogen ions. Most importantly, these reactions help maintain acid-base balance in your blood. You never think about your acid-base balance because your body just takes care of it, but when this balance gets too far off you’ll be pretty sick and it can be an emergency. Carbonic anhydrase also assists in getting the carbon dioxide that your cells produce out of your tissues and into your bloodstream to be transported to your lungs for exhalation.

It’s a really important enzyme. It’s also a really fast enzyme. One of the fastest. There are different forms of carbonic anhydrase, but it can work at a reaction rate of up to one million per second.

One million reactions per second. One million!! Per second!!

Does that not just boggle your mind? Seriously. I mean, hummingbirds beat their wings up to 80 times per second; I can watch them flying and yet even that is hard to wrap my head around, something happening 80 times in just one second. And carbonic anhydrase works 12 500 times faster than that!

There are a lot of really cool enzymes but carbonic anhydrase is probably my biggest enzyme crush. It was definitely my first enzyme crush anyway, and you never forget your first crush. By the way, enzyme crushes are totally a thing. Or maybe they aren’t…?

I can picture you all reading this right now with a look of confused concern on your face because you’re just now realizing how geeky I actually am. But I can’t be the only person with a favourite enzyme? If you have a favourite enzyme let me know in the comments.

Anyway.

When you’re sick for a really long time it’s really easy to feel like your body is working against you. As the years go on and more body systems start to fall apart, you feel like your body can’t do anything right. Your body is fighting you. Your body hates you.

“My body hates me.”

I’ve said that so many times, and in so many different forms.

I’ve been saying it for years.

I remember back in university, whenever I had to explain why I couldn’t order from a restaurant like everyone else or whenever someone asked me about all the little containers of food I always had with me, I would explain by saying, “my stomach just doesn’t know how to be a stomach.” When a doctor would ask me why I had gastroparesis I would say, “No, I’m not diabetic, my stomach just likes to make my life miserable.” When I would need to sit down part way through a conversation I would say, “sorry, my body hates standing up.” And whenever a nurse would comment about all of the things wrong with me for someone so young, I would answer with, “yeah, my body hates me.”

“My body hates me.”

My body versus me. Me versus it. I guess pitting myself against my body like that was a coping mechanism? A way to assure myself that it wasn’t my fault? I was not my body, I was just stuck with it. And if my body hated me then it made it okay for me to hate my body.

“My body hates me.”

Then earlier this year I found myself feeling like a victim. A victim of my life, I guess, but when you break it down I was really feeling victimized by my own body. Everything that sucked about my life sucked because of what being stuck in my broken body had done to my life. My body hated me and I was allowing myself to be a victim of that hatred.

Except I absolutely hate that kind of victim mentality. And I didn’t want to carry that around anymore.

So I started making a conscious effort to change the language I use when thinking and talking about my body. My body doesn’t hate me…my body is doing its best. My body isn’t fighting against me…my body is working hard for me. It’s not that my body can’t do anything right…my body needs help with some things. Or a lot of things, but needing help is okay.

My body doesn’t hate me.

For every one thing going wrong in my body, there are thousands of things going right, thousands of things that I never even think about precisely because they’re just working perfectly day in and day out, flying under my radar. Like acid-base balance. Of course there are the things that used to fly under my radar that I now have to think about. But even still, the functions going right far outnumber the functions going wrong.

My body doesn’t hate me.

And when it’s hard to really believe this, well that’s when I remember carbonic anhydrase. All of the carbonic anhydrases working away at a speed I can’t even wrap my head around.

And that’s also when I remember the sodium potassium pump. And the DNA and the RNA and…and…and…and all of the other incredibly cool things happening at the molecular, cellular, tissue, organ and organ system level every single second of every single day. In my body. And in your body.

Even in my broken body, it’s all happening.

Because my body doesn’t hate me. And I am not my body’s victim.

I do live in this broken body, and I am stuck in it. I have to live in it, but also I get to live in it. And it works really hard for me. Besides, broken doesn’t mean destroyed.

We are doing our best, my body and I.

And all of the carbonic anhydrases. *swoon*

 

Yeah…

Apparently it’s HPN Awareness Week. HPN stands for Home Parenteral Nutrition. Which is another way of saying IV (intravenous) nutrition at home. Which is what I do and how I get the majority of my nutrients and fluids. Because my stomach and intestines don’t work properly. Because of a number of different reasons all kind of working together.

(I usually refer to it as TPN for Total Parenteral Nutrition, but TPN is often used interchangeably with HPN when the setting of TPN delivery is the patient’s home.)

I don’t really pay attention to all these awareness days and weeks and months anymore. It usually just feels like an echo chamber of the people living with the various conditions they are raising awareness for being the only ones to really pay attention to each other’s posts. And sometimes it’s validating, but a lot of times it just feels like a reminder of how sick I am and how much it sucks to have what I have. But that’s just me.

Anyway.

It happens to be HPN Awareness Week and that happens to tie into what I was coming to write about in the first place. So let’s go with it.

For HPN Awareness Week I’m supposed to talk about what I want others to know about life on HPN. And I’m pretty sure I’m supposed to say positive things.

But the truth is that I have HPN burnout. I didn’t really know that’s what I felt until one of the program nurses put a name to it earlier this year. She asked me if I did all of my TPN stuff myself. I said yes. She asked me if I infused seven nights a week. I said yes. She asked me how long I’d been doing it for. I said coming up on four years. She said wow that must be hard. Then she asked me if I felt burnt out.

I paused for a second, and I started thinking about it.

I thought about how every evening I dreaded getting my TPN set up and running. I thought about how I had reduced the hours of my infusion so I could finish and unhook everything earlier even though that meant I couldn’t stay hydrated the following day. I thought about how the whirring of my pump every night made me miss falling asleep in silence. I thought about how being pumped full of fluids all night long meant I hadn’t slept through the night in almost four years. I thought about how I had to rip at my skin every time I took a shower just to keep my line protected. I thought about all the line care. I thought about all the supplies. I thought about…

Yes, I answered. I felt burnt out. 

I feel burnt out.

I feel bad for feeling that way because I know I’m lucky to have access to HPN in the first place. But still, I’m burnt out.

HPN is a huge responsibility.

Oh and something you might not realize is that it also takes up a ton of space! An entire extra fridge. Boxes of fluids in the closet. IV pole. An entire extra (very large) dresser in my room full of medical supplies. Overflow supplies wherever I can find space. And so much garbage. I recycle what I can but the waste from the sterile medical packaging is a little ridiculous. I feel guilty every single time someone shares something about reducing plastic and zero waste living.

But back to the responsibility part. HPN is not something you can half-ass. Ever. Because the consequences of that can be really serious. It’s all routine to me now but it still feels like a burden. And I do it all without any help. So it’s a burden that I carry alone.

Which brings me to what I actually came to write about today.

I had a clinic appointment with the TPN team recently. It was on October 1st, which happened to be four years to the day since I started TPN, which isn’t important except that I liked the coincidence.

One thing we discussed at that appointment was central lines. You can’t infuse TPN into anything but a central line. I’ve had five different lines in my chest and my current one I’ve had for just over two years now. Which is a record for me and I’m super pleased about it.

But. Central lines are not invincible. And when you’re using it 14 to 16 hours a day, every single day, wear and tear happens. I’ve had the same line for two years, sure, but it’s also been repaired four times now. Every repair means a trip downtown to get it fixed. Sometimes through the ER. Always unplanned. It’s great that it’s repairable, and it’s great that the issues I’ve had with it have been repairable, but each repair leaves my line a little bit shorter. The next time my line needs a repair it will end up too short to really be functional, and at that point we’ll need to book a procedure to get a new line placed.

So that’s likely going to be sometime in the next year.

As we discussed this, I was asking about different line options. I was looking for the perfect solution that doesn’t exist. Different lines have their pros and cons, and sometimes people get lucky and they last for a really long time. But also when you’re using it as often as I am, needing a new line every few years isn’t uncommon. And isn’t my fault.

“Okay. But every new line placement creates more scar tissue. And if I’m needing a new line every few years then that’s a lot of scar tissue and then we’re not going to be able to keep placing new lines…”

A moment of hesitation. And then the doctor, nurse and dietitian collectively said, “yeah…”

And then we moved on.

Central access, and potentially running out of it one day, is a big ‘yeah…’ in my life. I’ve got some other big yeah…s, too. Quite a few, actually.

But my entire life does not consist just of these yeah…s. I’m not in denial. I know they’re there. I acknowledge them every once in a while. And I deal with them when necessary. When the yeah… becomes a yeah. Or a yeah! Then I deal with it.

And the rest of the time? Well the rest of the time is about those ellipses. The in-betweens. Most of life happens in the in-betweens. All the good stuff happens in the in-betweens. So I’ve got some big, bad yeah…s. Okay. But I’m here for the in-betweens.

Which brings us back full circle to HPN Awareness Week.

I have HPN burnout, yes. But HPN is the reason I get to experience the in-betweens. Where the good stuff happens. Don’t get me wrong, bad stuff happens in the in-betweens, too. A lot of it, honestly. But the in-betweens are an all or nothing thing. And I want the good stuff. So I’ll take it all. Burnout included.

HPN has given me four whole years of in-betweens. I want four more. And four more after that. And then another four. And then some. Bring on the yeah…s if they give me more in-betweens.

I’m here for the in-betweens.

I’m here because of HPN.

And I’m glad.