Minding my manners

A few weeks ago, I found myself in the ER one morning after 24 hours with a fever-and-friends (tachycardia, chills, shakes, aches, and a horrid headache). I was pretty certain it was just something viral, but a possible central line infection is not something you mess around with.

Unlike last fall when I was admitted right away and loaded with IV antibiotics only to be discharged 10 days later with a question mark diagnosis, the ER doctor I saw this time was pretty chill. Blood culture results take a few days to come back, but based on my other labs that morning, he agreed that it was probably just viral and he let me go home. Just 24 hours later my labs were a mess and he wouldn’t have let me leave, but at the time it was the right call.

I was appreciative and I thanked him, but I also apologized. I felt bad for raising alarm bells prematurely, for using the ER unnecessarily, and for wasting hospital resources. I felt bad that my mom had to go out of her way to drop me off before work and I felt bad that my aunt had to come drive me home. All this hassle and there wasn’t even anything wrong with me. Everyone assured me that coming in was the right thing to do, better safe than sorry and all that, but self-doubt triumphed to the point that when I got home I actually pulled out my TPN manual and read the pages about what to do if you are showing signs of infection to reassure myself that going to the ER had been the right move.

It had. But still. I felt silly. I felt like a hypochondriac. How could I not know what a virus felt like? Alright, I thought, now that I know what a viral fever-and-friends feels like, next time this happens I can wait it out two or three days before being concerned.

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Okay, so not a virus

And then the next day the hospital called. My blood cultures were growing yeast. I had to come back in to start treatment. I was probably going to lose my line.

There I was feeling bad about using the ER unnecessarily and apologizing for being worried over nothing when in fact there was actually something to worry about. There I was preparing myself to wait it out several days next time when in fact going in early is what allowed them to catch it early and start treatment before things got worse.

I was apologizing for nothing. Well, actually, I was apologizing for reacting appropriately to my situation, a situation beyond my control…so yeah, I was apologizing for nothing.

And the thing is, I do it all the time.

I say sorry. A lot. Too much, honestly, and most of the time it’s for things that are out of my hands.

By nature and by nurture I am a polite, peace-keeping people-pleaser. Let’s be clear here, I am nowhere near perfect, but I genuinely never want to be a bother. I never want to be an inconvenience, a burden, or an extra stress in someone’s life. And yet, I live with an unpredictable chronic illness that requires me to be a bother and to rely on other people to carry the extra load that my broken body can’t bear.

I hate that part. In fact, that might even be the part of this whole deal that I hate the most. I have this unrealistic idea that my struggles should be confined to my own life and that they shouldn’t affect anyone else. Sometimes I even feel bad even asking my doctors for help despite the fact that helping me is what they get paid for.

And so I say sorry. A lot. But they’re not empty apologies; if I say sorry it’s because I mean it. It’s because I respect your time and I don’t want to waste it. It’s because I know you have enough going on without having to worry about me, too. It’s because I wish you could be carefree even though I can’t. Even when I know it’s not my fault, I still genuinely feel bad when my problem ends up becoming someone else’s problem, too.

Very often I feel like a burden, but the thing is, the only person making me feel that way is me. And I think maybe the reason I feel like a burden all the time is because I’m constantly apologizing for being one. People tell me the same thing over and over again, “don’t be sorry,” and so I think it’s about time that I listen. I think it’s about time that I stop apologizing and start saying what I really mean.

And what I really mean is thank you.

When I apologize for needing a ride to the emergency room, what I really mean is thank you for going out of your way to help me. When I apologize for having to cancel or alter plans because I’m too tired or too sick to follow through, what I really mean is thank you for understanding. And when I apologize to a doctor for presenting with a problem they don’t know how to fix, what I really mean is thank you for listening and validating my concerns anyway.

What I really mean is thank you.

Thank you for your patience. Thank you for your time. Thank you for looking out for me and making sure I’m not left behind. Thank you for caring.

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Thank you for making me important to you because you are important to me, too.

I’m an imperfect human in an imperfect body. As much as I would like to be able to handle everything on my own, I can’t, and that’s not something to be sorry for. At the same time, there are so many people in my life who help me carry that load, and that is something to be grateful for.

So I’m going to stop apologizing for my existence, and start thanking other people for theirs. I’m going to stop simply minding my manners and start being mindful of how I mind them.

Less apologizing. More appreciating.

Mind how you mind your manners.

I don’t really know who Miss Manners is, but I’m pretty sure she would approve.

Grey’s Anatomy got it wrong

Like many seasoned chronic illness patients, I am very skilled at watching Netflix for hours on end. One of my go-to series is Grey’s Anatomy and I’ve seen every episode more times than I care to admit.

Now, I think we all know that you can’t believe everything you see on TV, particularly when it comes to medical dramas. Sure they have medical consultants on board, but they still get it wrong a lot of the time, at least they seem to when it comes to situations relevant to my life. For example, they mention gastroparesis in one episode but they incorrectly explain the function of gastric neurostimulator and the prognosis of the patient having it implanted. In another episode they reference the TPN a child is receiving but then the entire set up they point to is one for a feeding tube.

So there are clearly some factual errors. But I think there are some emotional ones, too.

There is an episode wherein one of the surgeons finds himself a patient in the hospital unable to swallow and in need of a temporary nasogastric feeding tube. He refuses, and no one wants to argue with him because, as one of the doctors says, “You know as well as I do that a feeding tube is psychologically devastating. It takes away a man’s dignity.”

Whoa.

This episode aired on October 3, 2013. I didn’t watch it that night because I was in the hospital with my first feeding tube. After I was discharged home with that temporary tube in my nose, I let Grey’s Anatomy episodes accumulate on the PVR for a while because I needed a break from anything hospital related. It wasn’t until November or December, after my tube had been pulled, that I got around to catching up on Grey’s.

Let me explain what my life was like during that time.

Simply put, it was awful. I’ve been through a lot but I can safely say that those were the hardest few months of my life. I was up against a digestive system that was no longer functioning properly, yet I was trying to eat enough to avoid needing a permanent feeding tube. I was so sick and so tired.

And I was scared. Terrified, actually. I didn’t want a feeding tube and yet I didn’t know how I would survive without one. I was also confused, because one doctor was trying to convince me that I needed a tube, another wasn’t so sure, my friends and family were encouraging me to keep trying not to need one, and I was just an anxious ball of guilt and self-doubt. It was a big mess of everyone wanting what was best for me but no one knowing what that was.

That’s what was going on in my life when I watched that particular episode of Grey’s Anatomy and heard a (fictional) doctor say that feeding tubes are psychologically devastating.

I’m on the other side now and here is what I know.

There are realities more psychologically devastating than having a feeding tube. Being so sick you can’t eat and watching yourself wither away is psychologically devastating. Crying in your doctor’s office because you are worried you might die is psychologically devastating. Watching your loved ones suffer as they watch you suffer is psychologically devastating.

When I first watched that episode I was going through a psychologically devastating time in my life. And when I heard those words, all they did was stir up the giant muddle of opinions, feelings and fears I was trying to make sense of. I was fighting so hard against something I so desperately needed, and all that statement did was justify my fight.

Definitely, there are challenges, both psychological and physical, that come along with getting a feeding tube. I did not love having it, but I did love what it offered me. It gave me a chance to get back on my own two feet, to take back a little of the independence I had lost. It gave me a chance to go from someone who was dying to someone who was living. These are not psychologically devastating things. Quite the opposite, these are empowering things.

I’ve had some health hiccups since then and so I’ve taken some steps back, but it doesn’t change the fact that my feeding tube allowed me to take steps forward. It filled that devastating time in my life with hope. It allowed me to start rebuilding.

IMG_5490So when I watched this same episode the other day, and I heard those words again, it brought me back to that time in my life when I heard them for the first time. I wish I could go back and tell that terrified version of myself that the fictional doctor didn’t have to be right, that I could prove her wrong.

There are a lot of devastating things in this world, but my feeding tube was not one of them. My central line is not one of them. And even though there are devastating things, there are also wonderful things.

There is a whole life I get to live, all because of these tubes and lines. Me and millions of other people.

And there’s nothing devastating about that.

The Law of Long Weekends

I’m going to tell you a story about my wild Friday night. It’s a long story and brevity is not a strength of mine but I’m going to do my best to keep it to the point. This might be a challenge, though, because to be honest, at this exact moment in time I’m not 100% sure what the point of this post is going to be, but perhaps I’ll figure it out along the way.

Let’s start with a little background. I don’t consider myself a superstitious person. I do, however, believe in what I call The Law of Long Weekends. I believe in it so much, apparently, that I felt capital letters were necessary. The Law of Long Weekends states that medical malfunctions arise right before or during a long weekend, when you can’t get hold of the people who would usually be able to help, and it will be an extra day or two before you can.

I’m sure you can all recall a time when something went wrong on a long weekend, a time when you said, “Ugh what terrible timing! Of course this is happening now.” But me? I’ve lost count of how many times this has happened and it’s at the point now that when something goes wrong in and around a long weekend I’m not even surprised.

Okay, so my story starts at 3:45 yesterday afternoon when I felt something dripping down my chest. TPN. Friday afternoon leading into a long weekend? Check. I made several phone calls, but I’d been around the block before so I knew that anyone who could help me stopped answering the phone at 3:30. My TPN nurse, my doctor’s office, interventional radiology and ambulatory care at the local hospital.

Uhhh, now what?

I stopped my infusion, clamped the line, and got a ride down to Eagle Ridge Hospital, conveniently located less than 5 minutes from my house. Because I had been to their ER before with the same problem (last summer on the August long weekend, wouldn’t you know), I wasn’t confident that they would be able to help, but it was worth a try. I can barely manage one night without TPN, let alone three, so at the very least I needed someone to place a peripheral IV so I could run saline for a few days. Not ideal, but better than nothing,

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Scissors in Chest Girl

After checking in at the ER and being triaged, I found myself sitting in the waiting room for a while getting a lot of strange looks from people who were probably wondering why I had scissors (actually a Kelly clamp) coming out of my chest. Scissors in Chest Girl. My superhero name.

Unfortunately, none of the nurses there felt comfortable fixing my line, and the one who could’ve had gone home, as had the PICC line nurses at Royal Columbian Hospital. 3:30 is apparently the magical going home time for everyone central line savvy. The doctor I saw said he would try, but he wasn’t entirely convinced it was actually leaking so he sent me home and told me if it was leaking again later then just to come back. I tried to protest but he wouldn’t budge.

Aye yai yai. Called my mom to pick me up. Went home. Started my TPN. And lo and behold it starts dripping all over the place. Who could have predicted that?

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Lactating Lady…Scissors in Chest Girl’s unfortunate alter ego

Back to the ER, this time hauling along my huge TPN backpack with my infusion running and TPN leaking all over. More strange looks from people as I sat there in the ER with an ever-growing wet patch on my shirt and smelling like TPN. Yuck. Forget Scissors in Chest Girl. Now I was Lactating Lady. My other superhero name…so basically I’m like a transformer or something.

It was pretty much the same scenario with a different doctor, except this one seemed to just get it more. He managed to get hold of an IV therapy nurse at Royal Columbian who was still there doing outpatient antibiotics and said he would fix my line. And so I called my mom to come get me, again, and we headed over to RCH where my line was thankfully repaired. Phew!

As an added bonus, by the time we got to RCH it was after 8:30pm and you only have to pay for street parking until 8:00, which means that I managed three ER visits in one day without paying to park! A win for Scissors in Chest Girl and Lactating Lady.

And that, my friends, is my story. Now for the point…hmm…

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I’m a product of my generation so I take selfies while waiting for my ride

Well for one, I now have more evidence in support of the Law of Long Weekends and so I’m sure my Nobel Prize in medicine is on its way. And two, next time I’m bummed out about my boring Friday nights at home I’m going to recall this story and remember that home is better than the hospital.

Driving home last night I said to my mom that this doesn’t even seem strange to me anymore. I forget that going to the ER on a Friday night to fix a central line so that you can eat for the next three days is not a ‘normal life’ thing. She shared that sentiment, and then said that she wished this wasn’t ‘normal life’ for me.

Here is what I told her: this is just life with a central line, and life with a central line is better than no life at all.

There are a lot of things about my life that I didn’t and wouldn’t choose for myself. I didn’t choose my DNA. I didn’t choose illness and disability. I didn’t choose a life in which I don’t get to call the shots myself, a life that depends on the involvement of doctors and nurses. But I do choose Friday nights in the ER. I do choose to be Scissors in Chest Girl. I do choose to go to those doctors and nurses for help.

I choose these things because life with a central line is better than no life at all.

And I choose life.

Huh, I guess this story had a point after all.