Tag Archives: central line

Out came the snowman sweater

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This past month has been a stressful medical marathon. Four weeks ago I had my old central line pulled due to an infection. Unfortunately, the new line that was placed was not done so properly so three weeks later it was falling out and I underwent yet another line placement. Add in a whole whack of appointments, ER visits, new medications, unwanted side effects and the usual relentless symptoms day and night, and life has been really wearing on me lately.

I think you know by now that I like to put a positive spin on things. I do my best to have a good sense of humour about everything…and by everything I mean all of the random, weird, gross, random, frustrating and random stuff that comes along with having a chronic illness. Much of the time this sense of humour is not for anyone else’s benefit, but for my own. I laugh things off because if I didn’t I would probably drown. The weight of it all is too much to carry day in and day out and I keep things light so that I can keep my head above water. In reality, though, there are days when I do carry it all. There are days when it all becomes too heavy and too real.

Yesterday was one of those days.

After my line was pulled because of an infection, it never healed properly. Multiple antibiotics later, it was still looking really angry and becoming more and more painful. I was getting really concerned and was ready to call my doctor this morning, when last night I was poking around in the wound and I saw something strange.

It was the cuff. It was a piece of my infected line that had been removed four weeks before. Apparently cuffs are occasionally retained when lines are removed and apparently they often don’t cause any problems. I don’t know what the protocol is when the site is infected, and I don’t know if they’re supposed to inform the patient about any of this…what I do know is that for four weeks I had no idea the cuff was still in there and that it was the reason my infection was getting worse and not better.

It takes a lot to rattle me. I have tubes pulled out of and shoved in to me without any sedation on a fairly regular basis, and I deal with these tubes at home every single day. But pulling out that cuff? That definitely caught me off guard!

To be perfectly honest, it scared me. Most of the time I don’t really dwell on the fact that I have this scary thing in my chest. I don’t focus on the risks associated with it, the extra hassle it adds to my life, and how as much control as I’d like to have, ultimately I have to trust someone else to place it and remove it. I hate that I have not just one, but two tubes in my body that, as the result of an unlucky tug or less than vigilant care, could land me in the emergency room with no notice. I hate that, but that’s overwhelming, so most of the time I just don’t let my head go there.

Sometimes, though, I can’t help it. Sometimes the unpredictability, uncertainty and maintenance piles up and becomes too much. Last night it was too much.

I stood there in the bathroom, tweezers in hand with blood dripping down my chest while I struggled to stay upright as I waited for the nausea meds I’d taken over an hour earlier to kick in, and I wanted to cry. All I could think was, “I don’t want this to be my life. No thank you. I need a break.”

So I took one. Sort of. There is no such thing as a break from chronic illness. When the problem is family, work, school, whatever, you can escape for a while, but when the problem is your body there is no getting away from that. Instead, you have to settle for a sort-of break.

For my sort-of break, I took the night off from TPN. There were still tubes coming out of me, of course, but for the rest of the evening I was able to move around without hauling an eleven pound backpack along with me and I was able to sleep untethered. It was a good start, but when I woke up this morning I was still in need of cheering up. Too sick and tired to go anywhere or do much of anything, I went to my default happy place: Christmas. Out came the snowman sweater…my crochet-embellished-tacky-Christmas sweater.

I’ve been wearing it all day! And yes, it is making me happy.

I know that I’ll bounce back because I always do. I know that soon enough, whether it be a day from now or a week from now, I’ll be able to laugh again at the random, weird, gross, random, frustrating and random things that happen. Everything overwhelming me right now will go back to just being my norm.

In the meantime? I’m just waiting it out in my tacky sweater.

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Most of this post was written on Tuesday and now that it’s Thursday, I can tell you that I am bouncing back. The weight of it all doesn’t seem quite as heavy for now and I’m able to find things funny again. I considered not even posting this now that I’m feeling less overwhelmed, but the thing is, all of that exhaustion, fear and distress are every bit as real and present in my life as the silliness, the humour and the acceptance, and I think it’s important to share that.

I also know without a doubt that I am not the only one feeling overwhelmed by life right now, so I just want you to know that you’re not alone in that. I want you to know that it’s okay to need a break and it’s okay to take one.

I also want you to know that it’s okay to wear a snowman sweater when it’s still summer. Now, I can’t imagine why you wouldn’t have your own snowman sweater, but just in case you don’t, here’s some winter whimsy to tide you over until you get your own!

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Why I’m celebrating my incurable diagnosis

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“Are you diabetic?”

I’ve heard it before. I’ve been hearing it for years, in fact, but with the recent ER visits for an infection around my central line and the days of IV antibiotics and re-assessment that followed, I heard it five times from five separate doctors all within one week. Gastroparesis and autonomic dysfunction are common co-conditions in diabetes so after all these years I now fully expect to be asked this question.

During that same week, a triage nurse commented on how I was so young to have so many random health problems. A nurse in interventional radiology asked me what the plan was for getting me better and back to normal life. And an ER nurse’s eyes welled up with tears after she took my lengthy medical history and then realized we were the same age.

Again, these are all really common and understandable responses. Health care workers are more accustomed to seeing complicated chronic conditions in older patients, not patients in their 20’s, like me. It probably doesn’t help that despite having recently turned 24, I’m often mistaken to be 15 or 16 years old!

All of these reactions are usually followed up the same way. Why? Why do you have this? Why is this happening to you? Why aren’t you getting better? Why isn’t your age allowing you to just bounce back?

For six years I haven’t had an answer, but now I have one.

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I have Ehlers-Danlos Syndrome. I have an incurable connective tissue disorder that affects my joints, blood vessels and organs. I’m not going to magically get better and it’s possible that things might get worse.

And I’m celebrating.

To be clear, I’m not celebrating the incurable-not-getting-better-but-maybe-getting-worse part. That part is as overwhelming and frustrating as it sounds.

But that part really isn’t anything new. Sure, we didn’t know what was causing all of my problems but it was well established that my illnesses were chronic. It was understood that there would be ups and downs, highs and lows, but that I would be tackling health struggles for the rest of my life. And that hasn’t changed.

Here’s what has changed.

Next time I meet a new doctor and they ask me why all of this is happening to me, I will have an answer. Next time I wonder if my illness is something I brought upon myself and could have prevented, I will know that’s not the case. And next time I experience some bizarre new symptom and I want to pull my hair out wondering why my body is so strange, I’ll know that strange is just par for the course and that it’s not just all in my head.

When I first learned about Ehlers-Danlos Syndrome over two years ago I immediately thought, “I think I have that.” However, as many chronic illness patients know, most doctors don’t really appreciate it when we diagnose ourselves and then ask for the tests or referrals to confirm it. It took a lot of casual mentions, strategic asking of opinions, polite acceptance of brush offs, insistent re-mentions and then, as always, months and months of waiting. Now that I have a diagnosis, I also have a reminder to trust my instincts and never stop advocating for myself.

This diagnosis brings a lot of peace of mind and ah-ha moments. Yes, now I know why I can’t eat and why my body sometimes forgets how to stand up, but there are so many other things about my life that all of a sudden make sense! Now I know why my dance teachers used to get after me for having ugly elbows, loosey-goosey shoulders, and knees and ankles that didn’t line up properly. Now I know why I hold my pens and pencils differently. And now I know why my family used to give me strange looks when I couldn’t finish my steak because chewing was just too exhausting and painful (apparently not everyone feels like their jaw is going to fall off while eating steak?). There is a long list of little things that all of a sudden make a lot of sense since this very important piece of the puzzle has been added.

So no, I’m not happy about all of the struggles future me has to deal with, but I am happy to have a better understanding of all of the struggles I’ve already faced.

I’m happy to have some answers.

I feel heard and I feel validated.

I feel empowered. And that is why I am celebrating. Ugly elbows and all!

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Socks and sandals…oh, and empathy, too

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Let’s talk about shoes. Other people’s shoes. And empathy.

Actually, let’s start with a story.

Last Wednesday was Canada Day. A friend of mine who lives near a park that puts on a fireworks show every year invited me to come over, crochet, watch the fireworks from her balcony, and then crochet some more (wild, I know).

“Sure!” I said, “I’ll bring the alcohol (swabs)!”

I didn’t actually say that, but I did say I would try and come. For whatever reason, be it medications or temperature or just randomness, I’ve been having really brutal headaches the last few weeks and Canada Day was no exception. For the majority of the day my head hurt too much to move yet I was also too nauseous to sit still. Quite the dilemma. Thankfully, though, by 8 o’clock my meds were working and my TPN was going so I rallied and headed out. And because I have a central line, I really did bring alcohol swabs!

I soon found myself at a roadblock. Literally. Some of the streets were blocked off to keep people from parking where they weren’t supposed to but I had been warned about this. Residents were of course allowed through, and since in past years visitors had been allowed through, too, I rolled down my window, told the police officer that I was going to a friend’s house and gave him the name of her street.

“Sorry,” he said, “we can’t let anyone through without identification and proof of address.”

Bummer, but considering how much effort it takes for me to leave the house I wasn’t ready to give up just yet.

“I understand,” I said, “but I’m not looking for free parking. My friend Lisa really does live at [insert address]. I’m hooked up to an IV here (pointing to central line) and I’m honestly just going to sit on her couch and crochet (pointing to giant ball of yarn).”

But alas, no luck. “Sorry. You can’t get through.”

I sighed and then turned around and headed home, my alcohol swabs unopened and my yarn un-crocheted.

The end.

At first I was disappointed because I was looking forward to a nice evening with my friend. Then I was annoyed for a few minutes. And then my thought process went something like this…I wonder if he would have let me through if I said I was going to knit instead of crochet…maybe I would have had more luck if I had started crying…note to self: learn to cry on demand…perhaps I just look really suspicious and up to no good…that’s probably it, I probably just look really hard core.

And just in case you’re curious, ladies and gentleman, this is apparently what the suspicious-up-to-no-good version of me looks like:

Suspicious-up-to-no-good-me

Now if that’s not hard core I don’t know what is.

In all seriousness, though, I couldn’t really be annoyed because the police officer was just doing his job. And even if he had bent the rules before, I decided to put myself in his shoes and think about why he maybe wouldn’t bend them for me. I was able to imagine up at least a dozen reasons to explain the bee in his bonnet. For one, even though he wasn’t wearing a bonnet maybe he really had just been stung by a bee. Maybe he was recently broken up with by someone who crochets. Maybe he was hangry or dehydrated. Hey, maybe he even has undiagnosed POTS and was feeling really sick standing outside in the heat. Or, perhaps he was just bummed out that he had to work on Canada Day.

Who knows, but by the time I got home I wasn’t annoyed anymore and I actually found myself feeling a little sorry for the police officer! Sure, I wasn’t able to end up hanging out with my friend, but he was potentially a recently dumped guy with a chronic illness who was desperate for food and water and had just been stung by a bee. Sounds like a pretty bad day to me. And even if none of that was true, at least I was no longer annoyed!

If anything, I was grateful to be in a good enough mood that the situation didn’t really phase me. Without a doubt, my reactions vary depending on what else is going on in my life. Had I been over-tired that day, I might have unintentionally burst into tears or let him ruin my night. If my own responses can vary so much day to day then of course the responses of other people can, too.

This Canada-Day-Almost-Adventure is a somewhat silly example, but I really do believe in giving other people the benefit of the doubt. It helps me to let go and move on. It keeps me from wasting energy being upset and turning small conflicts into all-consuming grudges. And it lets me save my energy for battles actually worth fighting. A little bit of time in someone else’s shoes often saves me a lot of time stomping around in my own.

So why not try putting ourselves in each other’s shoes now and again? In a perfect world we would always treat everyone with kindness and respect and never let our emotions or personal problems negatively impact the way we interact with each other. But this isn’t a perfect world. Plus we’re humans, not robots. We have unique experiences, fears, dreams, insecurities, and burdens, all of which shape the soles of our shoes. The only way to understand what someone else’s footprint feels like is to have some empathy and spend a little time wearing their shoes.

I’m going to leave you with a little style tip: you can even justify socks and sandals in the name of empathy. It turns out that making an effort to better understand each other trumps any major fashion faux pas.

Socks and sandals for the sake of empathy

Check out those toe socks…I don’t know about you, but empathy is looking pretty fun to me!