Tuesday, August 9, 2016

DTP Awareness Month!

Sometimes it's hard for me to come up with blog topics when they aren't spontaneous. Throughout the year, there are specific months or weeks or days dedicated to raising awareness for specific conditions that I may be living with, and I want to do my part to help raise awareness. But when it feels forced, it is harder for me to come up with a blog post that feels like something I want to write.

August is Digestive Tract Paralysis (DTP) Month. I know, it's a mouthful (no pun intended =P). I was trying to figure out what I wanted to write knowing I had a month to come up with a topic when it kind of fell in my lap.

As most of you know, I live with gastrointestinal motility issues (say that 5 times fast) from my mast cell disease. The main issue that I have is called gastroparesis which literally translates to stomach paralysis. That means that my stomach does not empty what I eat in a timely manner. Instead, the food sits in my stomach for hours (or longer...) beyond what it is supposed to. If you are interested in why that is a problem, keep reading...

In northeast Ohio, it's a hot day when the outdoor temperature reaches over 90F (it'd be a REALLY rough day if the indoor temperature was that hot too =P). If you're doing anything outside in that kind of weather, you're for sure making sure your food is not left sitting out in the hot sun. Food + 90F = rotting nastiness...following so far? Now imagine that this same food is mashed together and left to sit in even hotter weather, how about around 98.6F? See where I'm going with this?

I know it's not a great thing to think about, but for the purposes of raising awareness, unfortunately, that's reality for thousands of us living with some form of DTP. There are days that I'll wake up in the morning with what we call "rancid burps" because I literally have food from the previous day rotting in my stomach. Remember that food and body temperature isn't such a nice combination? Now add stomach acid to the mix...I'll leave that up to your imagination =P

Why am I painting this picture?

Before I answer that, let me tell you about an encounter I had with a woman in the grocery store a week or so ago.

I had gone into the store to pick up some miscellaneous groceries, mostly for Nick but a few things for me, too. I was in the check out lane with my basket when a woman got in line behind me. As I was putting my stuff on the belt, I snagged Herman (my feeding tube) on the basket. It took me a minute to untangle myself. The woman behind me was watching, and I could feel her staring at me as I finished putting my groceries on the belt.

Here's what Herman (III) looks like!
She asked me what the tube was and I told her that it was my feeding tube. She asked what that meant and I briefly explained that I had a condition called mast cell disease that at times causes me to go into anaphylaxis from digestion plus caused my stomach not to work properly and the feeding tube allowed me to get nutrition without causing major reactions. She looked at the food on the belt and asked if that was mine. I replied that most of it was for my husband but that I could eat some things on good days.

There was a pause in the conversation, and I thought we were done talking so I turned back toward the cashier. Then she stated that she didn't know how I could not eat and if that was her she would just die and there was no way she could ever live with a feeding tube. I just smiled and shrugged (not so good at witty comments in person), but here is what I wanted to say:

You're right. You would die if you couldn't eat. That's the point.

Why did I spend the first part of this blog explaining what gastroparesis is like? Because I want people reading this blog to understand what it looks like when our bodies decide that something so essential to survival (eating) is not going to work. The reality is that yes, you would die if you could not eat.

I understand when people are caught off guard when they realize that I don't eat normally. Food is such a central part of our social culture that when you take that away, it's weird. I know that. But for someone to tell me to my face that there was no way she could live with a feeding tube, as if Herman is somehow worse than the alternative...

Don't get me wrong, I wish I didn't need Herman. I would LOVE to be able to eat normally and not have to worry about anaphylaxis or severe pain or throwing up. But hear me when I say that I am thankful for Herman. Without my feeding tube, I would not be where I am today.

I hear that I don't look sick a lot and even told that I look too healthy to need a feeding tube. Tell me how that makes sense?? I look healthy BECAUSE of my feeding tube. Before Herman it was always a battle to keep my weight from bottoming out, I was malnourished, my body was not able to function properly because I was unable to get the nutrition I needed, plus add in the potential for anaphylaxis with eating...I was NOT in a good place.

Herman has been one of the best decisions we have made for my health. He has helped stabilize my weight so one day of puking my guts out doesn't immediately drop my weight to dangerous levels. I can still get nutrition even on bad days because I run my feeds into my intestines and skip my stomach altogether. He has given me a way to take my medications even when I'm puking my guts out and saved us numerous ER trips. When I'm super nauseas, sometimes I can vent or "throw up out my tube" which has likely saved my esophagus and teeth from damage. I have been able to build up my strength so my body is able to fight off reactions and infections better than when it was just fighting to survive.

I never wanted a feeding tube, but know I'm being completely honest when I say that I am glad to have Herman. That doesn't mean that I don't have nights I want to rip him out and throw him across the room. It doesn't mean I don't miss the days of being able to lie on my stomach and not have 12" of tubing hanging off my body. And it definitely doesn't mean that I don't miss being able to go out for a "normal" date night with Nick to dinner and a movie or celebrate birthdays and holidays "normally."

But it does mean that I am thankful for the life I have because of Herman. I can be active because of him. I am running again because of him. I have avoided countless ER trips because of him. I am making progress against mast cell disease because of him. I am alive because of him.

Raising awareness is important to me because of situations just like the one I had at the grocery store with the woman who didn't understand. Yes, it was awkward to hear she wouldn't want to live with the very thing keeping me alive, but I'm not upset with her. The first time I looked in the mirror after having my NJ tube placed was the first time I had seen a feeding tube on anyone other than a tiny baby.


That is why raising awareness is so important. So that we don't have to feel awkward and uncomfortable about the very things that are keeping us alive. Plus, her reaction, unfortunately, wasn't that far off from reactions I've had from medical professionals...yeah, you wouldn't believe how many doctors and nurses have never seen a "healthy looking" adult with a feeding tube...

Awareness is so important because there I times I am desperate for treatment I can't get at home, but a doctor who doesn't know what to do is hesitant to treat me for fear of messing something up (as if I don't already have enough mess inside me...come on, people, just try something...I promise I won't break...and even if I do, I'm falling apart anyway...).

Sometimes it can be hard to come up with topics for these scheduled awareness months or weeks or days...but the reason I keep writing even when it's tough is because this example I just wrote about is not an isolated incident. It's the most recent (and the only one to be told to my face someone would rather be dead than have a tube), but these sort of misunderstandings are all too common for those of us living our lives in the alternate reality known as mast cell disease or rare disease or chronic illness.

So thank you for reading! Thank you for being a part of helping me raise awareness about some of these tough-to-talk-about topics like paralyzed organs and rotting food. And most of all, THANK YOU, for never making me feel uncomfortable for my feeding tubes. I have the greatest family and friends ever. Herman and I (and Nick) are so grateful that you all are a part of this crazy life we're living =)

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