The weighting game

I’ve written a number of times about the waiting game that those of us with chronic illnesses play, but today I’m talking about its homophone.

The weighting game.

I feel like I need to add a million disclaimers to this post. Weight is such a sensitive subject for so many people so let me just say that I can’t know what it’s like for everyone else, but this is what it’s like for me. And I know I’m not alone.

Since I first got sick six plus years ago now, I feel like I’ve slowly surrendered more and more control of my body. At first it was just little things. A few vials of blood. A camera down my throat. A tube in my abdomen. Now that I rely on TPN, there is a team of health care professionals who determine the exact number of calories and the exact volume of fluid I receive every day. Without my central line I have no way of getting the nutrition I need. This means that unless I lie on a table wide awake and naked from the waist up while some strangers dig around in my neck and chest, I don’t get that nutrition. And when something goes wrong with this line I don’t get to eat, sometimes for days, until someone can fix it.

I’m not telling you all this so that you’ll feel sorry for me, rather I just want to describe a reality that may not be familiar to you, a reality in which your body is not entirely your own. Even though this reality is familiar to me, there are still times when that lack of control can be really unsettling. Weight, for instance.

I know weight fluctuations are very normal. Healthy people aren’t the same weight every single day, rather bodies have a range of average, day to day weights. Chronically ill bodies are the same. I’ve been a couple pounds up and a couple pounds down countless times over the years, but I’ve also had some pretty radical weight changes. When I first got sick I lost 25 pounds in a matter of months. After I got my feeding tube I gained 25 pounds, also in a matter of months.

125 pounds. That’s what all of the big swings up and down in my weight since I first became sick add up to. 125 pounds. And I had no control over any of it. It had absolutely nothing to do with lifestyle, and everything to do with an illness that was out of my hands.

Let’s try and make this relatable.

Do you remember how awkward and terrible puberty was? Do you remember how uncomfortable you felt? How foreign your body seemed to you? I’ve basically been living through that again and again for the last six years.

I can honestly say I didn’t like the way I looked after losing all that weight, and I am genuinely happy not to have a BMI below 16 anymore, but that doesn’t mean it wasn’t unnerving to watch the numbers on the scale quickly climb 25 pounds and it doesn’t mean I didn’t feel a little fat when I couldn’t button up my pants.

But I could never express any of that because for all the years I’ve been playing the weighting game I’ve also been continually worried about being labelled with an eating disorder (another very serious medical issue but one that requires different treatment than a GI motility disorder). It’s a justified worry considering that it’s happened multiple times. Believe it or not my surgeon once actually withheld necessary medication in the hospital because of that misjudgment.

As soon as you’ve been underweight because of a GI condition, it feels as if you are never allowed to have your own opinion about your weight again. You can be unhappy that you’re underweight, and you can be pleased that you’re gaining weight, but that’s it. Everyone else in the world is allowed to want to lose a few pounds, but not you. Everyone else in the world is allowed to be uncomfortable with rapid weight gain, necessary or not, but not you. You’re just supposed to be glad that you’re “healthy” and if you seem anything but people start to get suspicious about what’s “really” going on. Even if you find yourself overweight because of your illness, you’re not supposed to worry about that and instead just focus on the more important things like keeping your symptoms under control. You can’t win.

It’s not just GI conditions. The weighting game is played by patients will all sorts of diagnoses for all sorts of reasons. Medications, steroids, nutrition, mobility issues, metabolic disorders. Any number of factors can cause the numbers on the scale to bounce all over the place.

Okay, now back to puberty for a minute. Do you remember how embarrassed you felt when adults in your life would comment on “your changing body” and how those words made you cringe? Ladies, do you remember how you blushed when people noted that you were filling out or gave you that all-knowing smile as they talked about how you were becoming a woman? All you wanted was for people to stop looking at you and let you be. Remember that? Okay, well for all the times I’ve lived through puberty again and again thanks to gastroparesis weight changes, I’ve relived that awkwardness.

Just because I needed to gain weight doesn’t mean I wanted the whole world watching me while I did so. Constantly having people comment on your weight can honestly be very hard to deal with. And I know all the comments were intended to be supportive and encouraging, but that doesn’t make them okay.

We don’t just go up to people and say, “Oh hey! You’ve gained weight!” And if we’re trying to compliment someone or tell them they look healthy we never use words like pudgy, chubby or plump. We just don’t, yet I’ve lost count of how many times I’ve heard all of those things. So not only does it feel like you’re never allowed to have an opinion about your own weight again, but it feels like the rest of the world has an opinion about your weight and you’re supposed to just smile and thank them for sharing it with you. You know, since it’s a compliment.

I’m sure what I’m saying here could be extrapolated to make a statement about society, culture, beauty standards or something along those lines, but I’m not here to analyze that. I’m here to offer you my shoes to walk in and to talk about something that others with similar shoes and I don’t often feel we can talk about.

Confession time. Do you know what I did last weekend when I stepped on the scale and realized that I’ve gained 10 pounds in the last 5 months, and that even though we adjusted my TPN my weight is still going up? I cried. I don’t cry very often, and I honestly can’t remember the last time I did, but over the weekend I dissolved into a puddle of tears. Twice, actually. It’s not that I’m unhappy with the way I look, it’s that the way I look is not up to me. The way I look is determined by illness, medicine, science. And the way I look is not necessarily a reflection of the way I feel, a truth that I feel I always have to justify.

So I cried. I cried because I have no control. I cried because my body is not my own. I cried because I’m so ridiculously done with finding that my entire wardrobe is all of a sudden too big or too small. And I cried because I hate that I let this bother me. I hate that I care about what I look like or about what others think. But I do. I feel like with everything else I’m dealing with, something like weight should be trivial. But it’s not.

I cried because I’m tired of playing the weighting game. And because I’m tired of it being a spectator sport.

Self-image is not just about how we look, it’s about how comfortable we are in our skin. But it’s hard to feel comfortable when you don’t feel in control, and for so many of us with chronic illnesses that is the position we find ourselves in. We’re stuck in these bodies that not only don’t work the way they used to, but also don’t look the way they used to. The more that illness and everything it comes along with takes over your body, the less it feels like your body anymore. It’s a challenge to feel comfortable in your own skin when your skin no longer feels like your own.


Appointment time, where waiting game meets weighting game.

I didn’t write this because I need you to reassure me that I look fine or healthy. Please don’t tell me that I’m not fat or that I shouldn’t care what I look like. I don’t want you to tell me any of that because I know all of that.

I wrote this because this isn’t something that gets talked about. Because there are others like me, living in bodies that have been changed by illness, who are tired of feeling like their body is on display, not just to the medical world but to the rest of the world, too. For so many of us the weighting game is one we will continue to play throughout our lives against opponents we have no control over, and for medical reasons, we have to keep score.

Please, just respect that it’s a closed gym.

The year I got a new Easter basket

My mom still makes us Easter baskets. I’m the youngest child and I’m going to be 25 this year, and she still makes us Easter baskets. I have told her that we’re all adults now and she doesn’t need to keep doing this, but she insists that she must.

Now, before you get the wrong idea and think that we were helpless, coddled children who did nothing for ourselves, I would just like to point out that one year my mom decided she wasn’t going to make our lunches for school anymore and so we had to start making our own. Totally reasonable. Except that this decision was made for all three of us at the same time, and while my sister was in grade seven I was only in grade three.

So yeah, my mom still makes us Easter baskets, but I also started making my own lunch when I was eight years old.

Anyway, we’re kind of big on holiday traditions in my family. At least I am. I have probably always been the most enthusiastic about carrying out our traditions, but I wasn’t always alone. It’s just that everyone else has matured past their need for everything to be exactly the same every year, and I might never reach that point.

Did I mention we’re kind of into tradition?

For as long as I can remember we’ve all had our own specific Easter baskets, and even now that we’re grown up and the other two have moved out, my mom still checks with me to remind her which basket belongs to whom. This was the scenario on Saturday afternoon when, all of a sudden, my eyes landed on a basket I didn’t recognize.

My first thought… who is this interloper basket and where did it come from!? My second thought…oh but it’s so cute! And my third thought…I kind of hope it doesn’t belong to anyone because I want it.

“Hey mom, where did that basket come from? It’s so nice and Easter-y!”

“It’s yours. Don’t you remember?”

“What? No…”

“I bought it for you last year but you didn’t want it because –“


Apparently not my entire life…baby me with a basket I don’t recognize. She knew not what she was doing

And then I remembered! As you can probably imagine, when you have a daughter who can’t eat any chocolate, jelly beans, or other such traditional Easter treats, it can be a challenge knowing what to put in her Easter basket and so to compensate for the fact that tic tacs are just not as exciting as mini eggs, my mom thought I might enjoy a pretty new basket. I, however, was not on board with this. Quite the opposite, I was shocked that she tried to tamper with tradition and last Easter I was rather dismayed to find that my basket, the basket I had been using my entire life, was nowhere to be seen.

Fast forward a year and there I was, delighted by this pretty basket that was apparently mine.

Phew! 500 words of backstory for a basket that lives in the crawlspace and gets at most 48 hours of stage time a year. Let’s get to the point now, shall we?


I’ve written a lot about giving change a chance and being open to new ideas, and that definitely could be applied here, but I’m actually going to take this in another direction.

When I dismissed the new basket last year, my mom didn’t take it personally that I didn’t love her idea. She let me be. And when all of a sudden I was all for it this year, she went with that, too. She laughed at me, as did I, but she didn’t get all high and mighty about it. There was no, “I told you so!” Now, I realize we are talking (in a lot of depth) about an Easter basket, which is just not something worth getting high and mighty about, but let’s take a step back.

I have received so much unsolicited medical advice over the years therefore I know how frustrating and annoying it is to constantly field good intentions that look and sound a whole lot like unhelpful and irrelevant suggestions. And yet, I still find myself doing it to other people. My first instinct is often to skip past listening lane and start straight down problem solving street. This isn’t just unique to health problems. We’ve all been there, on both the giving and receiving end, countless times in our lives.

I do believe that much of the time it comes from a genuine place of care and concern. We want to help alleviate each other’s struggles. We want to be useful. But sometimes, I think the most helpful thing we can do is just listen and then let each other be. I have definitely thought, “I don’t understand why they won’t try this…why don’t they just take my suggestion?” but the thing is, everything looks simpler and more straightforward when we’re looking at it from the outside in. We can say, “If it were me…” all we want, but unless we’re the ones in the middle of it, we have no idea how tangled and complicated a situation really is.


And after all that, here’s the pretty new one

In our own lives, we come around when we’re ready. We try new things when we feel steady and grounded enough to do so. We reach acceptance on our own timelines.

And we have to let other people do the same. We can always listen and offer encouragement along the way, but there are times when we need to step back and give each other space to figure things out.

Sometimes the most helpful thing we can do is just be there. Quietly. And trust that it will all work out okay.

And if that doesn’t work you could try buying someone a nice basket…however success is not guaranteed!

The princess and the potato

This might come as a bit of a surprise seeing as how last week I pretty much spammed you with posts for Feeding Tube Awareness Week, but here I am a week later and I no longer have a feeding tube.

Whoa what? What’s going on? When did this happen?

I’m just going to tell you the whole story, okay?

Here is the story, start to finish, from the day my feeding tube went in to the day it came out.

FullSizeRender (2)

And now here it is in words.

Once upon a time last week at my GI appointment, we decided that we were going to go ahead and have my feeding tube removed. I was hesitant to tell anyone because I knew that without a proper explanation it would be really easy to get the wrong idea and think that this is a good thing. It is a good thing, but it’s also a bad thing.

Let’s start with a good thing, like the fact that my abdomen is no longer constantly aching or in pain. Right from the start my belly decided it didn’t want the foreign object there and so it has spent the last two years trying to get rid of my tube. I had problem after problem with it, more problems than are normal, but I put up with those problems because what else could I do? The tube was hurting a lot, but it was helping a lot, too, seeing as it was how I got all the calories I needed to do important things like stay alive. Except then it stopped being helpful and for over a year now I have been getting all of my nutrition from TPN.

Which brings me to a bad thing about this. Despite the fact that my body hated my feeding tube from the get go, tube feeds are a lot better for you than TPN. TPN means a central line which means the possibility of blood stream infections. It’s also not especially friendly to your liver. And it’s just not natural or convenient or easy.

It’s a confusing situation, I know. I got my feeding tube because I was sick and I got it removed because I’m sicker, not better.

Good thing, bad thing, whatever, but one thing this is not is an out of the blue spontaneous thing. I have spent many months contemplating this decision and considering all of my options. In fact, I have spent so much time thinking about this decision that I’m not sure what I’m going to spend all my time thinking about now that it’s out!

Okay back to my GI appointment last week. Once we decided having my tube removed was a good, reasonable decision, my doctor faxed a requisition to interventional radiology saying so, and all I had to do was wait to get an appointment. Easy.


How tubes normally sit

But my belly, even though it was getting what it wanted, couldn’t go down without a fight. I woke up on Sunday morning and I couldn’t stand up straight. My abdomen was in so much pain and everything hurt…moving, breathing, laughing, yawning, talking. I knew exactly what was happening because it’s happened many times over the last few years: my I-refuse-to-be-a-lady-in-waiting abdomen was trying to push out my feeding tube.


How my body likes to deal with tubes

By Monday afternoon the balloon holding my tube in place was wedged in the tract running through my abdominal wall which by the way is really painful. It hurt enough that I called IR to beg them to get me an appointment as soon as possible. Thankfully, when I talked to them on Tuesday they could fit me in on Wednesday afternoon. Phew! Only 24 hours to go!

Here comes a plot twist!

Later that night I noticed my tube inching out more and more. At first I panicked and started to shove it back in, but that was incredibly painful. Plus, it was scheduled to be removed the next day anyway. And so I pulled it out! It was disgusting and exhilarating all at the same time, and to be perfectly honest, I am rather surprised that I was gutsy enough to go through with it. Thankfully the next day was garbage day so that grosser than gross tube was taken right to the curb. So efficient! And I saved myself a trip to the hospital. Double efficient!

The pain relief was almost instantaneous! And less than 48 hours later my stoma is healing really well. All that granulation tissue that has been trying to heal that site for two years is now very happily living out that dream. As soon as it got what it wanted my abdomen shut up and calmed down. Leah and I compared the situation to the story of the princess and the pea, but a really giant pea. More like a potato. It was like the princess and the potato.

And that’s that. I don’t love the situation I’m in, but I do love that I am potato free. It’s possible I will have another feeding tube placed one day, but for now I’m happy to have one less thing to think about and a little more freedom. All in all, I’m left with a really weird story to tell and a really weird scar to show for it.

The end.