It has been two weeks since I spent the night being tortured in the hospital. It’s been a little less than two weeks since I had to fight for the right to have the feeding tube removed. I have to admit, it’s been an odd couple of weeks. It seems surreal, looking back on it. I am caught between bitter laughter and horror, trapped in a place of mixed emotions and fear of the future.
On the positive side, I am tube free. No matter where I have to go from here with this illness, at least I am no longer living with something that was a continual threat. My days are not filled with the whir of a pump, the scent of my stomach and the formula and the continual pain that came with the tube. I’m not sure if everyone with a feeding tube is in pain all the time, or if it was just because mine was never right—it doesn’t really matter. What matters is that the pain from the tube is gone. As I have said many times, this is a subjective story, and I can only relate my own path. For me, it was pain every moment the pump was on, and when it came time to flush it—it got worse. It’s the little things they forgot to mention, things like the feeds lasting twelve hours a day (fifteen the first three), things like the continual pressure and pain. And, at least for me, fear that anything might move it out of place.
For now, that is behind me, and I am reveling in my freedom. I am enjoying a shower without worrying about the open hole on my abdomen. I am looking forward to a bath sometime soon. I love being able to just get up and take a little walk outside the office whenever I want without going through the ritual of disconnecting from the pump. I am loving the fact that the choking sensation I had the whole time is gone. Sleep is easier, I don’t have to sleep under a tray to keep my cats off the tube anymore.
Freedom—but freedom really is another word for nothing left to lose.
I know—that’s trite, cliché—but it’s also true.
The tube was put in not just for the gastroparesis, but to give my esophagus a chance to rest and maybe even stop the spasms that haunted my days. I had high hopes, but now, two weeks from the tube, I can feel my chest muscles getting tight again, I have to double or triple swallow some things. The spasms are coming back. I suspect they will be back with a vengeance, although I am focusing every positive thought in my body to stop that. I don’t want that pain back, I don’t want that terrifying feeling of not being able to swallow even my own saliva. I really don’t want to have my esophagus stretched again, although I know it’s just a matter of time.
What do I do now?
I have my Vitamix back out. I have a juicer. I have high quality protein and one of the best liquid multivitamins on the market. Vigilance has become a part of everyday life again. The worrying reality of the reason I agreed to the tube in the first place hanging over my head. Can I maintain my health with these tools? Can I get enough nutrition and calories for my body to work correctly? I can’t answer that.
I am going in on Tuesday to discuss all of this with my gastroenterologist. He took the time to call me yesterday—he was out of town when all of this happened—and he read my blog. So he knows. I think he understands why I can’t face a feeding tube right now. The question is—with my esophagus already starting its dance again, where do we go from here?
What happened has left me deeply wounded—physically and emotionally. I am free of the physical component. The hole is closed, leaving nothing but a dark purple scar surrounded by the scar left from the burns the adhesive caused. Even so, the specter of it will haunt me for a long time. The emotional wound hasn’t even started to heal, the edges are still raw and bloody. I seem to be able to control the overwhelming emotions so I am not crying all the time—or I can be patient with the world around me. I am trying to find a balance, but right now, nothing is in balance.
Am I really at the point of nothing left to lose? What is the next step? And can I muster enough trust to take that step? I don’t know.
What I do know is, whatever it means in the long run, today—this moment, I am free.
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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