On Being a Prisoner
It has been a long day, as many people know. I have spent it fighting for my right to life, for my right to make choices about my own body. The fight has not gone well. After hours and hours of being spoken to as if I am a child, an idiot or a madwoman, I have been driven into a huge corner. I have been fighting to have the feeding tube that caused me such agony on Friday/Saturday removed. I have been told, over and over, that it is not my choice to make. I have had people explain to me that feeding tube are important and not lightly placed. I have responded with a clear and concise answer: Yes, I know, but anyone looking at my records can see this feeding tube has been a nightmare since day one. My body does not want it in there for whatever reason.
Believe me, I wanted it to work. You all know how I agonized over the question of finally saying yes to the tube. You all know how I was terrified of what it meant, but still proceeded with hope. When the very first tube came out of place less than twenty-four hours after it was surgically implanted, I should have known. By tube four, it had become some kind of horrible joke and I have felt like I was a character trapped in a sadistic writer's fanfic.
After what happened on Friday/Saturday I have been afraid to move for fear the pain will return. I have been afraid to blow my nose. When I use any muscle even close to my abdomen, gastric contents bubble up and out of the hole. The whole thing is only being kept in place with tape and I have horrific wounds surrounding the stoma caused by the tape. The tape that is the only thing that is keeping this tube in place. The only thing that is semi-sealing a wound in a part of the body that does not really deal well with wounds.
I have made a decision. It will cost me, maybe not everything, but a lot. I have been forced into a corner by the medical establishment and left with nothing.
I get to go in tomorrow and the on-call for the GI group will "look" at the results of the initial test before replacing the tube and "If I am adamant" they will remove the tube, but only after I sign off that I am having it removed against medical advice. Yes, you read that right. I am being force to essentially say "I know this is wrong but do it anyway."
This is ludicrous. All they have to do is look at my file. Not even the whole thing, just from 17-June when the first tube went in. Any doctor, even one who doesn't know me, can see there is something very wrong with this whole situation. body has some weird, undetected flaw. Maybe it was done so wrong in the first place, this particular "track" was forever compromised. I am not ready to let them cut me again, and try another site. I can take a small amount of food and water by mouth--as anyone at my doctor's group could find out by opening my file. And yet, my rights are turned into a punishment. You are naughty and you must admit you are naughty before we relieve your suffering.
I am shocked, horrified and dismayed. I feel like I am being held prisoner by all this. Yes, held prisoner. I spent the entire day NPO (no food or water) just in case it could be fixed today. Instead I waited. I am now seriously dehydrated and hungry. Did any of them even consider the fact the tube has been unusable since Friday? That there was no way I could get nutrition through that obscenely out of place and broken feeding tube assembly?
Will I have it out tomorrow? Yes. Those of you who read my blog know why, for those of you who haven't--this tube has become a nightmare. I live in terror of it coming loose, of it slipping out of place. Now I have the added terror, a word I do not use lightly, of the balloon coming out of place again and putting me through the hellish torturous agony I was made to suffer over Friday/Saturday.
I am disgusted, afraid, upset and so, so angry that they are forcing me to do this. It is so wrong. What it means it I really don't have a voice in my medical treatment. I am not a valuable part of the team that treats me. They call the shots, they make the decisions and I? I get left with nothing--well not really, I get left with horrific anxiety, a fear of ever walking through the doors of a hospital again and enough PTSD to keep a small army going for years.
Ho boy! Okay serious prayers for tomorrow!
Thank you so much. The tube is out, thankfully.
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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.