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.
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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