Friday Night I Screamed
Over the last few months, I have questioned so much about life in general and my life in particular. I have fought my tendency to laugh things off and really be honest with myself—and others—about what’s happening in my life. It’s been a difficult thing, actually, making a joke and ignoring the horror is easy and I know it can help people deal with the things that are ugly, scary and horrifying until they are in a safe place to let go and feel those emotions. I feel like I’ve been living in the trenches lately, trying to laugh things off as my health issues got scarier and the choices harder—even as I written this blog, even as I have spoken about my fear, of death waiting for me.
Finally, I’ve hit a wall, I have not only seen the lurking Reaper, but perhaps had a glimpse of hell.
Friday started as many days start. I had not slept the night before, I had a vague sense of impending doom and pain lurking in the background that was enough to keep me from sleep. Earlier in the week, I had called my gastroenterologist because I had the feeling something was wrong with my feeding tube. They took and x-ray and decided it was all good, although after I spoke with my doctor he did decide to order a fancier x-ray. In the second of a long series of blunders, even though my doctor had ordered the fancy x-ray on Thursday, his nurse didn’t get around to ordering it until late Friday, which meant I would have to wait until Monday. It was just a simple mistake right?
So, back to Friday. The impending sense of doom was with me all day, as well as that pain, lurking in the background. It wasn’t so bad I had to stop doing what I was doing, but I was out-of-sorts and grumpy a lot of the day. At six, everything changed. I went to the store after work. As I walked in the background pain moved to the foreground, and I left the store half an hour later, I was hunched over, barely able to walk. When I got home, I sat on the couch, trying all the excuses in my rather large lexicon of excuses for why the pain was so bad. I’ve pulled a muscle. I’ve bruised myself. I twisted wrong. I have so many, I think I ran through most of them. I finally gave up at eight thirty and went to bed, hoping lying down with my cats would make it better. It’s been the solution many times before.
Not Friday. As I tried to swing into bed, the pain went over my threshold and I screamed. I have screamed in pain maybe three or four times in my adult life. One I have written about here, when I was awake and feeling during surgery. Another was when a rather large woman leaned against a toe that had been stitched back together. But through most of it, I just ground my teeth together and went on. Through broken teeth and broken toes and even labor, I never screamed.
Friday, I screamed.
After fighting the pain for almost thirty minutes a wise friend convinced me to call my doctor’s after-hours line. I told them I had horrible pain by my stoma (the hold where my feeding tube goes into my body). I told them my tube was flushing correctly, but I was in terrible pain. They told me to go to the ER. No arguments, no waiting until Monday, this was serious. Go.
It takes a lot for me to go to the hospital these days. After so many bad experiences, I avoid it like the plague. Friday, though, I hurt so bad, I knew something was organically wrong, something so big there was no way the doctors could miss, my doctor had ordered me there, it would be okay. Right? As we drove to the closest hospital, the pain was getting worse and worse. I had tears pouring over my face, there was no way to stop them. The pain would be so obvious even to the hardened workers in the Emergency Room I would be okay. Right?
Wrong. So very, very wrong.
When I was finally back in a room (after two hours in the waiting room, the torturous pain getting worse by the second) and the nurse ask about my pain level--which from one to ten at that point was somewhere around fifty—and she brought me one small dose of morphine and Zofran (an anti-nausea drug). About half an hour later, the doctor came in and asked me about my history of addiction! No “how do you feel” no “what is your pain” just “tell me about your history of addiction.” Grinding my teeth together, I told her I had no history of addiction, I wasn’t there looking for drugs. In fact, I live in a state where marijuana is legal and if I wanted to get high, there were certainly better options than the ER. She ordered a check of my feeding tube—even as I tried to explain the tube was fine, I’d just had it x-rayed Wednesday.
Still, they went with that plan. The nurse came in to flush the tubes—but apparently had never done it, and ended up spraying both of use with water. She finally got it and, surprise surprise it was fine. They sent me to x-ray and the doctor came in and said my tubes were in the right place. I said I know, that doesn’t explain the pain. And she said it was not her job to give me narcotics for undiagnosed pain, and I was going to be released.
I dug in my feet and said no, and they left me alone—for a very long time. I buzzed the nurses and they ignored me or dropped by with platitudes. I asked for some anti-nausea medication because vomiting with a feeding tube can be bad and they brought me not the kind I knew would work—because “Honey, it could sting when we give it to you”—but something else that did absolutely nothing.
That moment was the first time I would utter the words out loud. Words I had been thinking for hours of torture in a hospital bed when relief should be given The words? “If you release me now, the pain will kill me.” The nurse smiled and left. Another hour of no one checking on me and the physical pain so out of control I had a glimpse of what medieval torture must have been like. I wondered, somewhere in that pain-hazed world, what kind of witch or other outcast I was to deserve the torture being heaped upon me. For that is what it was, torture—deliberate, calculated torture. I was in so much pain I could barely breath, I could barely think and every time I saw someone I told them how much it hurt. I told the x-ray tech, I told the nurse, I told the doctor and the whole night it kept getting worse. The morphine hadn’t even touched it. It hadn’t even given me an inch of distance from it. I was getting desperate.
Smiling nurse came in at three and said “Are you ready to head home?” I’d had enough, I had tried everything. I had to get someone to hear me. I was dying, and I knew it. I looked he straight in the eyes and said “If you send me home in this pain I will kill myself as soon as I walk out of this hospital.” Well, those are magic words. They can’t release you if you have reported something like that. She said she would get a counselor. It was something.
Another hour of torture and the counselor finally came—remember this is four in the morning on Saturday, I had been at the hospital since ten Friday night—and she sat down all serious and earnest. I told her of feeling marginalized, I told her about torture, I told her about wanting to die. She finally asked “What can I do to keep you from killing yourself?” I told her all I wanted was someone to listen, to check and see what was wrong. I live in continual pain and this was so far beyond that I couldn’t handle it. There was something wrong. She agreed and disappeared. About fifteen minutes later the doctor came in and said she would send me for a CAT scan—although she wasn’t going to waste contrast on me—and she knew it would come back normal and I could leave. (If I’d had the strength, I think I would have smacked her smug face.)
Off I went to CAT scan, after six hours of torture beyond imagining. The techs had to help me on the table, I was incapable of moving. They had to lift me back on the bed. I screamed when they laid me down to do the scan. It was horrid, but I knew it would answer the question, it would make them all see. They took me back to my room and I was left in my silent vigil of agony. I could feel my heart racing and wondered if it would give out before anyone listened. I cried, in pain. I cried wondering if I should have gone home, I was beginning to question my own sanity despite the horrific pain. Maybe they were right and there was nothing wrong. NO! I knew there was something wrong and I held onto that truth like a drowning man clings to the tiniest branch in a storm-swept sea.
It was another forty-five minutes before the doctor reappeared. Her entire demeanor changed. She put her arms around me and told me “Thank God you persisted.” She was crying. There was something wrong, something very wrong.
The feeding tube system is held in place by a thing they call a balloon, and while my tubes were in their appointed places, the balloon had decided it wanted to migrate. What caused the horrific and increasing pain was the balloon attempting to crawl out of my body via my stomach wall.
Luckily, they caught it in the nick of time, it could be fixed—well it could be sort of fixed, the doctors who deal with that aren’t in on weekends but the ER doctor did her best and got it into the right place. It’s not held together correctly, it’s tape that’s holding everything in place right now and my stomach is draining out through the stoma.
I know I should be relieved the torture is over, but I’m not. I’m angry. No, it’s not anger, it’s rage. It’s fury. I was screaming in pain, I was tortured and I am supposed to be happy they fixed it. I am glad the pain is over, don’t get me wrong, but it took how long? I was humiliated. I was treated like a drug addict. They spoke to me like I was an idiot. I lay in agony for hours with begging for water, no help, nothing. I am supposed to let that go because they fixed it? I can’t.
I have been betrayed by people who are supposed to help one too many time. Even my own physician was a little put out with me last week as I tried to convince someone there was something going wrong. I feel small and lost. The humiliation heaped upon me hasn’t dissipated with the truth that I was right. I have lost everything. I can’t look to that sector for answers. I was tortured at their hands and I cannot trust that which can so blithely allow anyone to suffer like that. It’s gone—and with it hope in some ways.
Friday night I screamed. My life has changed forever.
Oh, Muffy, what I would have given to be there with you, to make them listen. I am so ashamed of my nursing colleagues and that they can be so easily swayed by the murmurings of one who thinks it is all 'drug-seeking'. I am so glad you dug in and refused to leave and told them the truth of how bad you feel and what it is doing to your life. Surely this changed your perception of yourself and your illness, but undoubtedly it changed the staff's perception of you, too. Yet, that seems a small gain for what you have been through. I hope you will print out your blog and take it to your doc at your next visit and insist he make it part of your chart and implore him to read it. He needs to know what it is like in your shoes. I know you are glad to be out of that pain, but you are still in the emotional throes of it all; a very real pain which is equally as severe. I wish I had a terrific suggestion. I don't except to keep reaching out and sharing what you are going through, to healthcare workers, fellow GP sufferers, hospital workers, colleagues and bosses, friends and readers. We all need to know and you will be better understood for it. I am so glad you wrote this; So eloquent and heartbreaking. I wish I could have done something. I am so sorry for your pain. Hugs.
I hope this changes things a little. I will carry this blog with me. I have been on the phone all day with the hospital trying to assert my right to make choices for my own body only to discover that it's not not my body at all.
Oh, hunny, I'm so sorry you had to endure all of that!! I feel I've been out of touch with so many things this last year and so sorry to have missed your struggles. I'm also struggling to understand this disease so as to know how to pray both for you and the doctors and scientists working with this problem. Please know you are loved and prayed for.
Thank you so much hon! I have been struggling to understand all this as well. I am now at a complete loss as I have found out I don't even have the right to have this horrific thing removed fro my body without my doctors express permission. I feel like I am being held prisoner.
That was unacceptable. You should tell that doctor that she has to make it up to you. She should give you her personal cell and be on call for you whenever ANY doctor doesn't believe you. You might even consider suing them. Also, consider requesting all of your medical records. It looks like one of the Drs may have written that drug seeking thing on your record. Under HIPA laws you not only have the right to see your records but demand they be changed. No one should have to endure what you did. They need to compensate you. That was criminal. I am so sorry that happened to you.
Thank you so much, Cathy. I will ask for my records. I have asked in the past, and they always seemed incomplete; I have since found out there are the ones with the orders on them and ones with more info. I have only ever been giving the brief ones.
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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.