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.

Waking up

So I haven’t really been around for the last year. On this blog, I mean. But also kind of in the rest of my life? I guess I just haven’t really felt like myself? I couldn’t make heads or tails of anything going on so how was I even going to write about it?

I think maybe I’ll stop ending every thought as a question now?

Okay. So I haven’t really been around for the last year. Because it’s been a mess of a year. The last twelve months have been challenging, to say the least. Life has thrown a lot of punches my way, and after a few punches I just didn’t have it in me to stand my ground anymore and so I let myself get beat up. I’ve been a bruised version of myself. Defeated, I guess.

Medically speaking, it started with a doctor poorly interpreting some test results and completely misleading me, and then it kind of spiraled from there. I was hot potatoed around between doctors, some of who didn’t exactly have great bedside manners, and so even though it wasn’t my idea or decision to be referred to them, I ended up feeling a lot of guilt about wasting their time and resources. Also I didn’t really have a diagnosis anymore. And when no one really knows what’s wrong with you or how to help you, not only do your hopes get crushed each time, but you start to doubt yourself and your experiences. You wonder if maybe everything is your fault. Maybe you’re the one to blame. I did finally end up in the office of the right doctor, except neither of us were our best selves that day and so it was honestly a bit of a traumatic appointment. And while she did have ideas about treatment, miscommunications led to major delays so nothing actually came from that appointment for another seven or eight months.

Medically, it’s been a mess. And that’s not even the half of it.

It’s also been a tough year for me in my personal life. Nothing big or dramatic. Mostly just the normal angst that comes from watching everyone around you moving on with their lives while you’re still sick. Still stuck. And there have just been a lot of big changes for a lot of people close to me, and those changes have left holes in my life. It’s the natural order of things, and I don’t want it any other way for them, it’s just really hard being the one left behind.

Oh. And then. In the middle of all of that other medical mess I ended up essentially on bed rest for about four months due to some pretty life interrupting pain. After a number of tests and invasive procedures I actually ended up in the hospital for about a week. We weren’t able to totally resolve things, but we were able to finally start that majorly delayed treatment. Except then that was its own disaster because of some intense side effects that could have been prevented had there not been more miscommunications and a long weekend.

Just another big mess. Another round of punches thrown my way. Another set of bruises. Another serving of defeat.

But then. Finally. Various new medications and treatments we’ve been trying have started doing what they are supposed to do and I’m starting to feel like myself again. My sick self, but still. Ever so slowly, I’m starting to get my life back. My sick life, but my life nonetheless.

It has been like waking up.

Waking up from a horrible nightmare. A horrible nightmare that I thought I was going to have to become resigned to indefinitely. One of those nightmares where you know you’re dreaming and you’re struggling to wake yourself up but your eyes just won’t open.

It has been like waking up from one of those nightmares.

Waking up is not as simple and straightforward as it sounds, however. Being awake is its own struggle. Because some days, even though I’ve woken up from the nightmare, I’m still living in a bad dream. A lot of days, actually. Some days are even a terrible dream.

But other days it’s a boring dream, and I mean that in a good way. And then some days it’s even a good dream. Or some parts of some days, anyway. And those days, those parts of days, are like a breath of the freshest of fresh air.

Those days are also the trippiest because as soon as I feel not terrible for even part of a day my head does this thing where it jumps ahead about one thousand steps and starts making big plans. For example, I start thinking about how I should probably be looking for a job. When the reality of severe illness inevitably catches up with me one hour…two hour…six hours later, it’s a mix of “wow I’m so silly what was I thinking” and “this isn’t fair.”

This “jumping ahead one thousand steps as soon as I feel okay for even just part of a day” thing is not new. It’s something that I’ve done every once in a while as long as I’ve been sick. It just happens to be happening a lot more often right now because after waking up from that drawn out nightmare my brain and I are kind of fumbling around trying to find our footing in New Normal.

The thing is, though, as disappointing as it is when I come back down to reality from that “wow I feel okay at this exact moment so I think I’m just all better now and let’s start making big plans” place, it’s been so long since I even went to that unrealistic place that just going there feels like a win.

And so I laugh at myself. Because what was I thinking? And I furrow my brow. Because it’s not fair. And I smile, because oh well. And then I continue finding my footing in New Normal because I’m going to stand my ground when the next punch comes along.

So that’s where I’ve been for the last year. The last messy year.

And here’s where I am now. Awake.

I feel sick every day. I’m in constant pain. Nothing about any of this is easy or straightforward.

But.

I’m awake!