I promised I would be more open about my life, more open about what it’s like in my skin. I really thought after my post, I would be sharing little slices of life. Annoyances like how no hotel on earth (I think) has something that can just be served to someone with gastroparesis or esophageal spasm. Happy griping about the little things that are suddenly challenges—you would be surprised how hard it is to get good coffee sometimes. (Okay, on that, I admit to being an utter coffee snob, but when it’s one of the only “real” foods you get, snobbery happens.)
So why am I here?
When I was first diagnosed, I set out and did everything I was supposed to do. I cut out heavy fat. I ate small meals. I used nausea meds when needed. I was doing pretty good, even though when I first heard “delayed gastric emptying” I never really dreamed what it meant. Even so, I settled in to be the best GP patient I could be…
Unfortunately, I was thrown a curveball.
I have esophageal spasms. They have resulted in many ER trips and several hospitalizations. Again, when it was first diagnosed I was happy. It finally explained the horrible chest pain that slammed into me every now and then and landed me in the ER with doctors giving me the “drug-seeking behavior” look. No longer was it an issue. It had a name, and a treatment—of sorts. Nitro, the treatment for some heart issues, also works for spasm. I was cool with it and even though there were a few more ER trips, it was okay. It wasn’t my heart, just my stupid esophagus.
Stupid esophagus became scary esophagus in November when on cold and rainy night I couldn’t swallow. Not food—my own saliva was like swallowing peanut butter. I barely got it down, and when I did, it hurt. I called the nurse hotline and discovered that when you report any kind of chest related pain you get carted off to the ER, whether you like it or not. Even with the fear—okay, terror—of the experience, I was handed a solution again. Dilation of the esophagus. Simple procedure and all was well—except for the fact when I eat solid food it tends to kick off a massive spasm so I just changed my eating habits again. A Vitamix became my new best friend and all was well.
Until several weeks ago. I ended up back in the ER with the worst spasms I have experienced. I was off the pain scale (the old one to ten) so far I had no idea what to say. Eleven? Fifty? The worst ever plus ten? I was eventually stabilized and had a second stretch of my esophagus. A solution, once again.
And now, the why we are here, the “what happened today” that will change my world.
The solution is not a solution, it seems. No. Today I heard the words I have been living to avoid—“feeding tube.” I know a lot of people have them. I know it’s something many people deal with daily—but again, this is me, subjective response. I am staring those words with terror. None of the consolations I use to comfort myself seem to work. Even the offer of a step between my life now and that tube is not consoling. Even the promise that it might not be permanent isn’t helping.
It represents a huge change in the way I live my life. Conventions, costuming, vending, writing—it all comes into question. Can I live a full life with it? Yes. Does that matter in this instant? No.
It’s the end of the world as I know it, and I really don’t feel fine.