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.

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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.



Dear new doctor…actually scratch that formal dear business

You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.

Why I’m celebrating my incurable diagnosis

“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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