Open the box of medical supplies. Start to unpack it. First the saline flushes. Then the alcohol swabs. Then the big Ziploc bag full of all the odds and ends. Batteries, positive pressure caps, needles, syringes, dressings, iodine swab sticks, skin prep, gauze, gloves. Quickly glance at the expiration dates and all is good. One by one, everything to its respective spot in its respective drawer.

Finally, the box of IV tubing sets. Open the box and open their drawer. Ready to put them away. Wait, check the expiration date. 2022. Oh right, compared to all of the other supplies these are always good for the longest. 2022, no problem.

2022.

2022…oh man. That’s five years away. Five years!

Five years…five whole years…

That’s twice as long as I’ve been on home TPN so far. Where is my calculator? Don’t do it. Don’t get out the calculator. Too late.

Five whole years. That’s about 1800 nights of setting up my TPN. I hate setting up my TPN. I dread it every day. I can’t believe I have to do it 1800 times in the next 5 years. And then all the years after that. But you’re lucky to have your TPN. I know, but I still hate it.

1800 nights of TPN means 1800 TPN bags. That’s 4500 litres. That’s almost 10 000 pounds. 10 000 pounds of TPN. 10 000 pounds of smelly chemicals being pumped into my body. Ew. But isn’t it awesome that medicine has found a way to keep you alive? Yeah. I guess. Still. Ew.

I wonder if I’ll still have this central line five years from now. It’s my seventh in less than three years. So probably not. But maybe. I hope so. It’s already lasted longer than most of my previous ones. That’s good. I can’t go through lines as quickly as I did for the first few years because if I do then in five years I will be running out of places to put them. Remember what the radiologist told you. They can get creative. This one will last. It has to.

In five years I will use 5400 saline flushes and 25 000 alcohol swabs. I will use 3750 needles and syringes to add 9000 vials of vitamins and medication to my TPN. These are just numbers. Don’t give them power. In five years I will change my dressing over 250 times. I hate changing my dressing. It’s not that bad. I still hate it.

In five years I will have my blood drawn a minimum of 60 times. But it will probably end up being at least 100 times. Why does this even matter? Since when do you care about needles? Drawing blood is getting trickier. Old Faithful hasn’t let you down yet. That’s not true. He’s not as faithful a vein as he used to be.

Oh gosh, I don’t even want to think about how many thousands of dollars of medication five years is. It’s about 30 000 dollars for just one of them. That one is covered. For now. Until they decide to cut off my special authority again. Then you’ll get it renewed again. Unless they decide to stop covering it altogether.

Five years. 1800 nights of TPN. 1800 nights in general. I wonder how many hundreds of those nights I’ll be up until the wee hours of the morning because I’m too nauseated to sleep. Then 1800 mornings of waking up already tired whether I slept well or not. And 1800 nights and 1800 mornings means 1800 days. That’s a lot of days. So many of them will be too long. And for so many of them I will feel sick or exhausted or useless or frustrated or lonely. Or all of the above.

No more numbers. Put the calculator down. Okay. Fine. But I don’t need a calculator to tell me how old I’ll be in 2022.

In five years I’ll be 30. Each year I feel myself falling further and further behind my friends, behind others my age. Will I even have anything in common with them still? Even more of them will have careers and live in places of their own. Even more of them will be traveling to awesome places. Even more of them will be getting married and having kids. Some of them will have all of these things. I want all of these things, too. I’ve always wanted these things. I will probably have none of them.

In five years will things be worse than they are now? How much worse? When will they get worse? How quickly? Maybe things will be the same. I don’t want that. I don’t want 1800 days of the same. I want things to be better. Maybe they will be. They probably won’t be. No, probably not. Maybe the same, though. Maybe. But they’ll probably be worse. I don’t know what you want me to say. I don’t know know either.

Just stop. Don’t go there. I can’t help but go there sometimes.

Do not let this swallow you. I’m already swallowed.

Everybody has something. This is your something. My something is too much sometimes.

I know. But you are bigger than your something. I feel small.

I know. It’s okay. Okay.

You’re going to be okay. Everything is going to be okay. Because I will make it okay, even when it’s not okay. Exactly. Things will work out however they work out. And however they work out will be okay. 

You are bigger than your something. I am bigger than my something.

You are bolder and braver and brighter than your something. You have more joy than your something does sorrow. You laugh more than your something makes you cry. You have found a way to live with your something. You keep living in spite of it.

I am bigger than my something.

You will be okay.

I am okay.

If I had to pick my finest hour, I would not pick yesterday between 3:00 and 4:00pm. Seeing as I’ve lived approximately 225 495 hours at the time of posting this blog (there are places on the internet to calculate such things for you), I have no idea which hour was my finest, but I can say with absolute certainty that yesterday between 3:00 and 4:00 is not even in the running.

And now I shall tell you a long story.

Yesterday I had an appointment with a specialist at 3:20pm in New Westminster. Now, I go to New West for specialist appointments all the time, but the appointment yesterday was not in the area of New West where all my other specialists hang out.

Before I left, as I do before I drive to any unknown location, I zealously mapped out my route and my back-up route. Google Maps told me it would take 24 minutes, but I gave myself 45 to account for extra traffic, and because being late is honestly one of the most stressful experiences for me. If we run into traffic on the way to a really painful medical procedure, I will genuinely be more stressed about not being on time than I will be about the procedure itself.

I’m not even kidding.

I’ve been like this my whole life. When I was in high school, Mondays made me nervous because that was my mom’s day off and since she didn’t need to get to work, my siblings always wanted to leave 10 minutes later in the morning. We left at 7:50 on Mondays instead of 7:40, which meant we arrived at school between 8:10 and 8:15 for an 8:25 start. But what if there was unexpected traffic? Or what if, as per usual, my brother wasn’t ready until 7:52? I started dreading Monday mornings on Sunday nights, that’s how much I hated even the chance of being late.

There are many more examples. You should ask Holly about the time at the Bellingham airport when I couldn’t find a parking spot.

I’m not particularly proud of the fact that the fear of being late transforms me into an agitated, stressed out, snappy person, especially since I hardly ever end up actually being late. It’s just that the possibility of being late makes me anxious. Heck, even sitting here and thinking about being late is making me anxious.

Anyway, back to my story.

I was driving to New West. The street I needed to turn down wasn’t obvious and I missed it. Woops. My back up plan was then foiled by a no left turn sign where I needed to make a left turn. Yikes. As possible get-back-on-track plans started racing through my mind, the busy traffic turned to gridlock. I was stuck. At 3:16 I started crying. My appointment started in 4 minutes and all I knew was that there was no way I could get there on time.

(I was on the 10th Avenue, by the way. Feel free to share your own 10th Avenue tragedies with me.)

Finally traffic moved enough that I was able to turn right down a side street and start heading back in the direction I needed to go, except I was on the other side of 10th and the street I was looking for doesn’t exist there. And then I was lost, but even more than that I was stressed and upset. My appointment had already started, I had no idea how long it would take me to get there, and I was in no shape to see a new doctor who I was hesitant about seeing in the first place.

So I pulled over on a random residential street and parked my car. I called the clinic. I lied and told them my car had broken down and I couldn’t make it. And truthfully, it wasn’t a total lie…my car was okay but I, the driver, had in fact broken down. And then I sobbed my eyes out for about five minutes before pulling it together (sort of), wiping my nose on my shirt sleeve (because when are meltdowns ever glamorous affairs?) and driving home.

Person crying in car spotted in New West. Wearing sunglasses – obviously suspicious.

If I’m being honest, my biggest motivation for pulling it together was that there were some parents walking their kids home from school and I was worried that one of them might call the police on me for suspicious behavior…I was, after all, wearing sunglasses, which all suspicious characters tend to do. The thought of explaining to the police why I was ugly crying over such an insignificant situation was embarrassing. What if it went on my record? It was safest to just drive home.

And that’s my story. It’s kind of sad, but it’s also kind of funny so if you find yourself wanting to laugh at me, it’s okay because now that it’s a new day I’m laughing at me, too.

As I said, 3:00 to 4:00pm on Thursday April 27, 2017, was not my finest hour.

Sure, the fact that I hate being late, especially for appointments, was part of it, but it wasn’t the only factor. Mostly I was just tired. Over tired. Exhausted. Things are just really hard right now and I’m exhausted all the time. I’m exhausted because I don’t feel well. Ever. I’m exhausted from having to fight so hard for my health. I’m exhausted from all the waiting. I’m exhausted because it never ends.

I’m exhausted from holding onto hope because believe it or not, hope can be exhausting. It’s hard to be hopeful that things will get better when things always seem to be getting worse. It’s hard to have hope that someone will be able to help me when everyone is at a loss. Hope is tiring right now.

Tiring, but still important. Still necessary. And still worth it, even when it takes all of my extra energy, and even when it means melting down in my car and missing an appointment. And even though I’m tired from being hopeful, I’m not tired of being hopeful. There’s a difference. Hope is wearing me out, but it’s also what’s keeping me going. Life is like that sometimes. So I keep hoping.

And I keep laughing, especially at myself.

I’ve rescheduled my appointment for next week. My sister helped me figure out another route. I’ll probably leave an hour early to be safe. And hopefully I won’t meltdown in my car. No promises, but I’m hopeful.

Exhausted, but still hopeful, and that’s all that matters just now.

P.S. I have put a box of Kleenex in my car for future such incidents, just in case.