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.
Traveling is an adventure, and not always a good one. I tend to take everything as it comes, but lately, things are rougher than they should be. In January I fell and sprained by right ankle and knee, making the day-to-day existence even trickier than usual. Traveling brings that home in a way that stuns me. I need a wheelchair to make it through the airport. Between my back and my injured leg the gates are just too far away. And that is just the beginning.
I have not spent a lot of time dwelling on my life, although this blog exists to share my experiences. I started it thinking I would share the ups and downs, in hopes that maybe someone else could feel they weren’t alone in their life. We all have problems, we all have issues, we all have life and occasionally it’s hard.
I was in the hospital several weeks ago. After a night in the ER that had me repeatedly asking if I had died and had somehow ended up in hell, I eventually was admitted. The nightmare got worse from there and included a doctor that accused me of drug-seeking behavior, a nurse that treated me like I was an errant child and a horrific drug reaction that led to not one but two endoscopies. The second of which I was conscious for—and that one involved a second stretch of my esophagus.
I tend to not talk about things, or maybe I don’t want to think things are as bad as they really are. Recently though, I came to the conclusion that it’s not how my life stacks up against others. Some have it better or worse—maybe. I say maybe because all experience is subjective. For me, it’s hard. I have attempted to hide, to not let out the truth of my life. The only time I’ve really mentioned it is when I “came out” about having gastroparesis and wrote a fanfic about it. Other than that, I tend to be quiet about it—thinking there are other people who have it a lot worse—but again, reality is subjective.
It was all brought home to me this weekend while I attended Clockwork Alchemy, a steampunk convention in San Jose, California. Because of the gastroparesis, I have had difficulty with many foods for a long time, and anti-nausea drugs are a part of my daily existence. The two esophageal stretches have led to life where I can’t eat solid food. Yes, I admit, I have cheated with a bite or two of something more substantial than food blended in a Vitamix, but every time I have paid for it. Pain, yes, and sometimes that extra special feeling of the food getting stuck half way down—only with me it’s not just a phantom sensation—it is what has happened. Once or twice I’ve spent an hour or more carefully swallowing warm water in the hopes of getting the food down. Usually it works. Sometimes the food decides to leave by a more direct route.
Doing a convention brings home all the things wrong and, in all honestly, takes such a huge toll that I am down one full day post con. Or I try to be. I have a full-time job and after a weekend of no real food and pain endurance, sometimes it all seems like it is too much. I don’t want to complain, but I think sometimes I don’t say enough, so I get into situations that are not healthy in a very real way. I push my body too hard. Somewhere in my head, I am still completely healthy and can handle anything. My heads not off, I have my arms and legs, so I am perfectly fine.
In reality I’m not. And I need to be more open about it. Traveling is exciting, meeting new people is wonderful. I love doing panels and babbling excitedly about my various passions. I also end up in an endurance race that has me wanting to scream uncle after two days. I am nutritionally compromised, my pain level is hard to manage and I just smile and go on.
I’ve decided it’s time to stop. I’ve decided it’s time to talk, and not through the voice of other characters in a fanfic, but in mine. I have a lot going on—is it more than others? Less? I don’t know. I just know this is my life. My food comes from a blender, my back is bad and my hands are numb half the time. My legs go to sleep, my neck never stops hurting. I’m not whining, I’m letting you all in on my life. I try not to complain, but maybe if I did, people would understand why I can’t do just one more panel, or one more con or why at times cranking out three thousand words is a challenge.
It’s a big step, admitting life is less than what I want it to be, but it’s time I made it. Funny that a trip could be the final straw, but it was—at some point this last weekend I realized in order to be healthy I had to admit I was so far from healthy it’s not funny. I need to be able to say no, and let people know why. It’s hard to admit I am not strong, I can’t chew through nails or take down a rampaging horde, but right now I can’t.
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.