Where to Go?
What do you do when the world ends? That seems a little over dramatic, but sometimes news hits you in a way that you are left reeling and wondering “Where do I go from here?” We all have our breaking point, and as I have said before, it’s subjective. What is epic “crossing the beams” bad for one person is not for someone else. I think I have reached that point, at least with part of my life.
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.
Ah, Muffy, my friend. I had a feeding tube, though mine ended up being temporary. It does strike terror into you when you hear the words. There is one thing I can tell you.....you will actually feel better once you get used to your feedings. Your body will get the nutrients more easily and be amazed at how much better you can actually feel. Yes, it will take getting used to, the tube itself, setting up the feedings, etc. Big hugs, Sweetie. I'm here if you need to talk. You have my email.
Thank you, hon! I know, somewhere in the objective and rational part of me that this step would be of benefit. What I am struggling with is the why. I've done everything right and still end up here. I know it will get better, right now I really want pizza and a hot fudge sundae.
Ooooh, pizza and hot fudge sundae sounds wonderful!! lol We can dream anyway.
The only thing I can really say right now is, if you need to talk, I'm a good listener. You know where to find me.
Thank you, and I will take you up on the listening. I promise not to make your ears bleed!
Thank you! I know in the back of my head it's not as bad as it feels right now, and I know I have a lot of loving support out there *Hugs* I guess it's just do frustrating because I have done everything right. And it's my esophagus that is making it scary.
My love... Huge hugs to you. You are one of the strongest people I know, and you've come through so much. I think some higher power, whatever it might be, is saying it's okay to be angry, it's okay to be scared, and it's okay to cry. There are people who love you, near and far, and will be here in any way we are able, if that makes a difference.
Thank you so much! I know I wouldn't have made it this far without my "family" all of those people who make up the best extended family-near and far- on earth. You are all the reason I keep going. The support and love give me hope to get up and go one every day!
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Multum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days.