Saturday, August 1, 2015

What does it mean to ME?

August is Gastroparesis Awareness Month.

I've been thinking about what kind of post I wanted to write for that. I felt like I wanted to post SOMETHING since this is a condition that has made a huge impact on my life, but couldn't figure out exactly what I wanted to focus on.

The typical awareness post seems to be the informative, here's-lots-of-facts-about-this-disease post, but since I've already done that, (click here to read) I wanted to do something else.

So I decided to just share what gastroparesis (GP) means to me and my family. I think the best awareness is to understand what it looks like to be affected by something. I know I can read all the facts and info about something, but it isn't until I meet someone who has been personally changed by it that everything clicks.

So here is what GP (and a bit of chronic illness in general) looks like to me and my family:

It means no dinner dates.

Baby food in the cabinets with no plans for a baby any time soon (sorry Moms =P)

A random and sporadic eating schedule...I may eat 3 times in one day then not again for 4 days.

Our living room being overtaken with feeding tube supplies and formula

Summer long battles with insurance companies trying to get coverage for said formula

An overflowing medicine cabinet with nausea and pain medications in multiple forms so I have options when I'm really sick

A slurpee fund jar where we put all our spare change (surprisingly something I've been able to tolerate quite well =P)

Trips back and forth to Pittsburgh to see my doctor and manage my feeding tube

Balancing wanting to go out to dinner with friends and dealing with it being hard to sit in restaurants and be unable to eat

Missing my favorite foods: tortilla chips, fruits and veggies, thai food, indian food

Being accused of being anorexic because I've lost weight because I can't keep anything down

Many nights of ER trips for pain and nausea relief when my meds stopped working

Nick learning to read me and know when to push for more aggressive treatment and when to just give me a hug and turn on the next episode of House or Suits

Me learning to trust Nick's judgement of when I've gone too far and need to go to the ER

Worrying every time I throw up that I've dislodged my feeding tube

The frustration of being in severe pain because my intestines have stopped moving, and the only medications strong enough to take away the pain also have the side effect of slowing down my digestion further

Having to schedule the days I'm going to try to eat something so if my stomach freaks out I have time to recover before my next important meeting/class/appointment/etc.

Canceling plans at the last minute because my stomach has decided I'm done for the day

Living with GP can be hard, not going to lie. The hardest part is the unpredictability of my symptoms. We make plans, but it's always with the unspoken addition of "depending on how Kylene is feeling." I do my best to push through the symptoms I can ignore and live as normally as possible, but some days it's just too much.

So that's what gastroparesis looks like to me and my family. It can be hard, but it's not always bad. I've learned a lot in the 8 years of symptoms and 3 years since being diagnosed that helps me manage as best as I can. Plus, it also means I can have slurpees every day and no one gives me a hard time =P

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