When I was little, I loved the story of the Little Engine Who Could. How he could conquer something seemingly insurmountable and win. The idea is so rooted in us, that we believe in trying again when we fail, we “get up when we are knocked down” and we “fight on”. I’ve been thinking a lot about this lately—fighting on, trying again and “I think I can” when I am knocked down and getting up and carrying on.
The problem with that is when do you stop? When do you finally say, “I’ve had enough”?
When I agreed to a feeding tube in June, I thought it would be an answer. That I would have some relief and my body could recover and maybe I could move forward with a new and improved life. I hoped. I wanted it to be so. Even after the trauma of the initial surgery, I thought this was going to be okay, I can do this. Even when I found out that I would be hooked to a pump for twelve hours a day, I thought this would be okay, I can do this.
Nothing is ever simple with me. My poor doctor has said this more than once, and once again, I’ve proven this true. The feeding tube keeps moving, migrating out of my intestine and into my stomach. After three tries, the doctor finally decided it might be because my stomach was doing something odd and so he recommended a gastric bag. In other words, the port on my tube for my stomach (I have one for the feeds which go directly into my jejunum and a second “gastric” port for the stomach) is now open all the time to prevent a build-up of anything that might cause the tube to take a trip. It worked—for a week. And it had to be fixed again. They are still hoping the gastric bag is the answer and that yesterday was the last time I’d have to have it fixed. It’s okay, I can do this. Even with the constant Reminder, I can do this.
So here I sit. All fixed. Only, I’m not. Because of the gastric bag, I can’t drink anything. Well, I can, but it literally goes straight through me and into the bag. The promise that I could maybe eat something sometimes is gone as well.
And I think I can do this.
I can, and I am, but that doesn’t mean there aren’t bumps in the road. The Reminder is hard to deal with, it’s not attractive, it’s a hassle. This adds one more thing on a life that occasionally feels overloaded. Bad news from the doctor adds another weight.
In my last blog, I talked about unthinking comments. Things that people say that can be cruel and they don’t realize it. Comments people make that I can’t really answer with anything but thank you because “getting well” is not an issue right now.
Then there are the people, few I will admit but they are out there, that are cruel. There are people who say things that are demeaning, dehumanizing, cruel and vicious.
Case in point—my feeding pole and bag have become an issue at my day job. Not because it effects my performance at my job. In fact, it hasn’t changed anything except for the fact I have to “unplug” before I walk out the door. Customers have asked about it, and I’ve explained. One little girl, who knows about my legendary love of coffee, told me she doesn’t believe it’s a feeding bag at all. It’s her opinion I finally convinced my doctor to let me have coffee hooked up to me twenty-four hours a day. Most people have been kind and understanding or completely neutral. As long as I can do my job, they don’t care, and I can do that.
There is someone who doesn’t like it. My boss comments on it every time she is in the office. When she asked why I had a blue fabric bag hanging on my waist, I explained that it was covering the gastric bag. I told her I have a friend who is making some more attractive covers and she said “well, thank God.” Then she started in on the pole and the bag again. It took everything I’ve learned through this experience, up to and including surgery without anesthetic, to keep from crying. Her parting shot of “I can’t wait until you get that tube out” was almost too much.
I have been struggling with the decision to say yes to the feeding tube from the first time I was told the tube had slipped—the day after the initial surgery. I questioned it again a week later when it had to be replaced again, and a week and a half after that. And yesterday. It’s getting harder to believe this is helping, harder to just try and accept and keep going. When you add outright meanness on top, it makes it almost impossible.
As I write this, I am reminding myself I’ve promised to be open about everything. I’ve nearly erased this four times. I have the idea to not complain, to carry on, so built into me that it took me a week and a half to work up to asking my doctor for pain meds for the continually aching hole in my stomach. It hasn’t had a chance to heal, but I was sucking it up and just gritting my teeth. But, as my doctor pointed out, if you don’t say anything, nothing will change. It’s true. So, I am not deleting half the blog this time.
Some days, it is harder than others. Some days, I can’t do it, and I want to cry. Today started out good, even considering everything, it’s ended rather differently. I’m not sure I can do this.
What do you do when someone says something so unfeeling you are left reeling? Something that sets you back so far, all you can do is sit and let the tears tumble out of your eyes? Why am I asking? I received a note today. I have been in turns crying, angry and so close to the abyss I can hear the wind whistling through the entry.
What could possibly have been said to create this vortex of emotion?
“I hope you are feeling better. Things get more challenging as the Reaper approaches.”
I am hoping that this is a case of misunderstanding, that the writer of the note does not realize that the Reaper is not approaching—he is camped out in my living room having a pizza party.
One of the reasons I started this blog, and made the decision to share this journey with you was because so few people have even heard of gastroparesis, let alone understand it. As you all know, I also have the additional challenge of esophageal spasms, which makes it just that more difficult. I feel a little like I have failed to make things clear. That perhaps I have not been as honest or as open as I need to be for people to really understand.
This note does give me an opening I have been looking for, or maybe another question to pose: how do I respond to people who say “get well soon”? There really is no getting better right now. There is no cure or answer. There are palliative measures, anti-nausea drugs, pills that relieve the spasm and of course now, my new friend, the feeding tube. Right now, the reality is there is no “getting well”. There are times of feeling better. The feeding tube has given me more energy, wounds that haven’t healed correctly are finally healing. Of course on the flip side. I am tethered to it for twelve long hours a day. It’s not an easy answer. It’s not easy to face every day.
And yes, some days I don’t want to face it anymore.
I know there are a lot of my fellow GP sufferers that have feeding tubes. I don’t know what their experience with the tube is, whether they have become accustomed to it and just hope for a day when it’s not there or if they wake up dreading the day. As I have said before, my experience is subjective, and right now it’s hard. It’s hard to face, it’s hard to know things are going downhill no matter how I struggle to go uphill. Some days it’s just hard to not take the plunge into the abyss.
This disease is not simple. It is not just “tummy trouble” as someone said to me recently. It is something that is taking lives. How many this year? Young, old, it doesn’t matter. Maybe that is where I have fallen down in sharing this journey with you. Because it is scary, the more you know, the scarier it gets.
I am afraid. Deeply afraid.
I try not to show it, or to be “down” when I am chatting gleefully away on Facebook or Twitter, but underneath I am trembling all the time. My days are planned around my illness in so many ways. The tube, the feeding, the continual pain from the GP, spasms and other things follow me day and night. I can never escape. I can feel the wind of the abyss at my back.
I have done everything right and still my body is failing. How far will it fall? The question haunts me every day. Is there really hope my esophagus will heal with this rest and I will be able to eat again? I don’t know. I can have liquid by mouth, but on a bad day, it still doesn’t go down. Today was one of those days. Will I end up in bed, unable to get out and walk in the forest? Is the chance of seeing some of the places I want to see—or see again—gone? All the people I want to meet, is that gone as well? I don’t know, and that terrifies me.
I do know that comments like the one in the note make the day so hard, I can barely see to the end of it. Yes, the Reaper lurks in the wings and as people are fond of saying “anyone could walk into a bus tomorrow” but I have the bus within me. And sometimes it feels like it is just waiting for its chance. Did the writer of the note understand this? No, I don’t think so. But that doesn’t change the reaction. It doesn’t stop the tears.
And it certainly doesn’t stop the fear.
How often are we lucky enough to face one of our worst nightmares and come through in one piece? A little while ago, I wouldn’t have considered that lucky, but having faced it—and more to the point, lived through it—I can say I made it. Does it make me less afraid? In some ways it does. I’ve been there, I’ve experienced it, and I am still mostly standing.
When we were last here, I was struggling with the news that I was going to need a feeding tube. I was still resolute in my belief I could make it without one—until I got a new phone. Funny that it would be a piece of technology that would bring everything into such a stark reality but it did. The phone had a calorie counter. I faithfully entered everything I consumed, planning to use it to prove how well I was doing. Only I wasn’t doing well. In fact, I wasn’t doing even close to well.
That led to a doctor’s appointment and the Discussion. The Big One. The feeding tube, and botox in my esophagus in hopes that it would help give me some symptomatic relief from the spasms that were getting steadily worse. So, after talking with my doctor, a wise and caring man, I said yes. It was the hardest thing I’ve done. Once I said yes, things started flying at me. I said yes on a Thursday, the tube was scheduled for Monday. It was so quick, but it was scheduled. I was ready to move on to the next part of my life.
I was nervous as we headed out towards the hospital on Monday. I always am before surgery. When I was a kid, I read a Reader’s Digest story about a woman who had been conscious during surgery. That quickly became one of the top ten things on my “Worst Nightmares” list. I know it’s silly, but every time I am scheduled for a procedure, that article comes back to haunt me. But I comfort myself with the fact I have had several surgeries and nothing even remotely like that has happened.
And then came Monday.
I had a funny feeling things were going wrong when my IV was blown and my hand was red and swelling. However my highly efficient nurse got a new IV started and we were a go. Once into the surgical area, they started giving me sedation. They kept asking if I was feeling relaxed, or sleepy. I kept saying no, and they kept giving me more. Still nothing… Then I felt the cold gel on my belly. I said the sedation wasn’t working. The nurse said he had given me more than most people need. None of that was a comfort when the scalpel cut into me.
My worst nightmare. Awake, someone cutting on me. I screamed. It didn’t stop. Eventually, I was reduced to weeping and asking the nurse to wipe my eyes because the tears bothered me. It was something I could control, so I grabbed onto it and held on though the long nightmare of hell. Time had no meaning. One minute, one hour, one day—it could have been anyone and it would still be an eternity.
It did, finally, end. I was fitted with my new feeding tube and sent up to a room to pass a long, long night. But that’s another part of the story.
I survived. Am I completely untouched by the experience? No, I dream about it. It crops up in my daily life in odd ways. The experience has given me one thing—I have the knowledge of what it feels like, what you think about at a time like that, how you handle the hours after it. I’ve been accused of taking research too far. In this case I agree, but it happened and I can use it. In fact, I will use it. Not just for my writing. I will remember the experience when I feel like I can’t handle something. I made it through one of my top ten nightmares. I can make it through today.
That’s what matters right now—making it through today.
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.
I had a fresh apple the other day. That might not seem like such a big deal, but I haven’t had a fresh apple for more than three years. When I was handed the diagnosis of gastroparesis, I read all the literature the doctor gave me then went looking for more. After several days of much research, I came to the conclusion that the best thing would be to stick to a moderate “flare” diet most of the time. From what I read, it seems that a lot of people are told to eat normally until they flare, then hospital, flare diet, and then back to normal. I understand. Food is a very basic thing and telling people—especially Americans—they can’t eat doesn’t go down well. For my own illness, I made the other choice—to change my eating based on the idea that when you are diagnosed with diabetes they don’t tell you to eat normally until you fall into a coma then change your habits. For me it worked.
Did I cheat? Of course I did. I admit it, pizza found its way in, the occasional veggie cheeseburger and fries and I just put up with the bleh that came after. I did notice, as the years passed, I was getting more sensitive and my bouts of “normal” food were getting further and further apart. Luckily, I was already a vegetarian, so when things went really wacky I could still have tofu and rice and not have the “Ewww, why am I eating tofu” problem. Still, I tried to go on, tried to live as normally as possible.
Then esophageal spasm entered my life. Looking back, I think I’ve had it for far longer than the doctors know. Seeing the symptoms now lets me put two and two together with that clarity of hindsight. Still, when the spasm was official it was another interesting adjustment. Most of the time it just feels like my chest is tight, occasionally it explodes into a fantastic eruption that feels just like a heart attack. And knowing I have esophageal spasm doesn’t change that fact. When you call the doctor or nurse hotline and say “I have chest pain, three nitro have not made it better” they will tell you to go to the ER. It’s probably just spasm, as painful as that is, but it could be my heart. Every time, same thing, and every time I have to go—once even saying no and having the nurse hotline call 911 on me. (How embarrassing is that?)
Back to that apple—you see it marks a new point in my life. Good and bad mixed together in a blender. Yes, a blender. That spasm decided it wanted to get worse, I couldn’t swallow without food popping back up whole. It never made it far enough to be an issue of vomiting, nope, it made it less than halfway down and back it came. Sometimes things made it halfway down and just stayed. When I could no longer get my own saliva down comfortably it was time for something that started with an endoscopy and it ended with my esophagus being physically dilated.
The dilation makes things easier to swallow and for about ten hours I thought it would let me eat a little easier again, but then I discovered that solids would kick off a massive back-to-the-ER spasm. So now it’s a blender. I keep telling myself it’s not a feeding tube. In many ways I am actually “eating” better than I was, thanks to the power of a VitaMix, but it doesn’t feel like a step forward right now. It feels like a step into a scary place of many questions.
I am not even sure I want answers right now. I’m terrified of what they might be, what they might mean. For now, I will settle for the blender and the foods I haven’t had in a long time. It’s something. Small though it may be, it is nonetheless something to help in the dark of night when the “what if” monster comes to call.
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.
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