After wrestling with the question for a long time, I have decided that for the next few weeks I am going to drastically limit my time on Facebook and other media. I don’t have enough spoons for everything I want to do. Facebook does take spoons from writing and writing needs to take precedence.
Additionally, with the immense emotional toll the battle over my records is taking, I am left bereft of energy and, occasionally, even the will to go on. This issue with the hospitals has me unbelievably low, and every time I turn around, they are ready with a new volley. Coincidentally (I’m sure) Risk Management called my doctor while I was there for a very early morning appointment. It took all I have to not just lose it then. Like I said, it was probably coincidence, but it felt (and feels) like I am being monitored. It is a very disturbing feeling. It also drains an already low reserve of energy to almost nothing. The continual worry of this situation is stressing me more than I thought.
I love my Facebook family, I enjoy the epic cute war, the plots of otters and sharing our lives. I just have to prioritize a little differently. While I used to be able to write, chat, post and play at the same time, I now can do just one thing at a time. As the months have worn on, and my cache of energy has been depleted—sometimes I imagine it’s like an aquifer slowly being drained without the “recharge” of rains it needs—I have played on social media, shared pictures and ignored the gnawing feeling of not writing. I need to switch it around.
Writing has to come first.
What does it all mean? I am not abandoning Facebook, Twitter, et at, forever. I am just restructuring my energy use. It is a difficult choice, but I have books that need to be written and they are not getting done. I have blogs, stories and other projects that are not getting done.
Please be patient with me as I work around this issue. I need time right now. While writing is one of the major factors—my health comes into play. Both in the energy I have, and in the healing I need to do. The night in August left a bigger hole in me than I thought. I realize somewhere that night, I lost hope. I think a part of me died, and I am looking to reclaim it. I know my trust (in medical care) was destroyed. The monster of the Three Little Words is haunting my steps day and night as new “solutions” are offered. Solutions that will not make it better.
And it scares me. I have always been able to write, and I hope focusing back on my writing completely, will let me save myself. I feel a little like a character in a show. It’s dark, there are monsters and sadly no 1939 Ford, 1967 Impala or sailing ship with a dragon companion are here to chase the monsters. I know they will be, I just need to find them again.
I think I had a heart attack last week. An actual heart attack, not the usual esophageal spasm—it felt different, it hurt different. I know I should have called 911. I had a friend who told me to call 911. That’s what you do, right? You call 911 and they help you, right?
Did I call?
I ground my teeth together and decided if I was going to die it would be at home with my cats.
So, I can hear the questions. Why? Do you have a death wish? Are you crazy? A masochist?
I was terrified as I fought for breath and the pain crept up my neck and into my jaw. I was crying in fear by the time the tingling in my hands started.
And I didn’t call.
I didn’t even call the nurse hotline, because I knew they would make me call 911, or in the face of my refusal, call the EMTs for me. Chest pain and heart attacks are not to be trifled with!
For most people, at least.
Sometimes there is a crime committed for which there is no punishment too terrible, an act so horrific that even those pledge to compassion shun and bully the perpetrator. A scarlet letter tattooed on the person, with no penance great enough to forgive the transgression. What could a person do for which there is no forgiveness, no recourse, no chance at retribution? What could be so horrible that you can never truly free yourself of the taint, even if you prostrate yourself before the world and shout mea culpa?
And, more to the point—what does this have to do with me (and my possible heart attack)?
Three words. Three little innocuous words, that when strung together mark a person a criminal so vile that they are never allowed to escape, never allowed to correct and never, ever allowed to forget. Three words that have changed my life forever. Three words that have led to adventures that are almost unbelievable. In fact, I wouldn’t believe most of them, had I not been there.
Welcome to the world of being branded with three little words “drug-seeking behavior”.
Some years ago, I went to the emergency room and a doctor ignored what was going on, instead deciding I was just an addict looking for a fix. He didn’t care if I was ill, he didn’t care if I had surgery several months later for the very thing that had sent me to the ER that night. Nope. I was just an addict—oh yeah, and even though he was wrong, even though the hospital sent me a nice “we’re sorry” letter, the damning words were left in my file. The doctor admitted it wasn’t true, the hospital said sorry, and it remained in my file. Unlike a friend who ended up in the hospital with pneumonia and they accidently put in his record he had a heart stint. He corrected them and poof out of his file it went.
But not those three words. They won’t remove them. They won’t correct them, and even “amendments” end up at the back of the file so doctors see the three words first.
More to the point that is all they see. Three words branded into my skin that allows them to ignore my pain, ignore my pleas and—one fine night in August—torture me for hours to break me and make me admit I was there for drugs. (See Friday Night I Screamed).
After that little mishap and the fight to have my feeding tube removed, I did what I had done before. I did what they said would help and filed a grievance. I spoke with patient advocates, doctors, nurses and clinic managers. I entered a letter from my doctor into my file that said they can call him anytime 24/7. I received a letter, a very long one this time, on heavy cream paper that said they were sorry. It was unfortunate. It wouldn’t happen again.
Only it has.
Remember the doctor who said I couldn’t have a knee replacement because I was too young? The Day (see The Day) I thought I had lost hope? I was wrong. There was further to fall and it was Dr. Surgeon who uttered the devastating words about a patient he had never met. The real reason for no surgery came out. Dr. Surgeon had noted in my file that surgery was inadvisable until patient overcame narcotics dependency. A man who had never met me. Someone who spent less than three minutes with me. Someone who had just condemned me to pain and disability and it was based on those Three Little Words.
Three Little Words that are not even true.
Three Little Words that have been refuted many times, three words that have led to a very thick file of those letters on heavy cream paper filled with—it turns out—meaningless apologies and promises to do better.
When Dr. Surgeon and I first met, I was left devastated. I also immediately called patient advocacy and filed a grievance. I thought the issue was my age. Okay, I know a college basketball player that had a total knee replacement at twenty-two—but he was an athlete. I guess I thought that made him a special case. Still, I went to hoop A and started the process. I spoke with several people. They were all kind and assured me it would be okay.
Then the Real Reason appeared. The Three Little Words. The crime that cannot be undone. My doctor—who knows me very well and has kindly made himself available 24/7 in case of an emergency—told me he was beginning to worry about the quality of the care I might receive because of those Three Little Words. I was horrified. He has never looked that bleak before. And it all suddenly hit me like the pain that had nearly driven me to the brink last week.
I immediately contacted patient advocacy. I have chased them for days. They told me they can’t remove it from my record because it isn’t tangible like the heart stint my friend didn’t actually have. They told me tangible things can affect the way you are treated in an ER. I guess torture, confinement and bullying don’t count for the Three Little Words. They are not magically tangible--but they are aren’t they? How many times have those Three Little Words pursued me through hell in an ER? How many times have I written of it—either here in this blog or in the pages of fanfiction, giving myself a resolution by helping characters escape from hell.
There is nothing left for me.
I will go through the motions. I will allow a tribunal to meet and make a decision about me. Doctors who have never met me who only have the cold words on a page will decide if there can be another AMENDMENT. No, they are not going to take OUT the Three Little Words. They will just have a tribunal (how very French Revolution kill the aristos of them) to decide if I can have an amendment to a statement that was a lie. A lie that now follows me, a lie carved into my body and a taint that nothing will cleanse.
It seems hopeless.
I don’t even want to fight anymore—what is it they say about the definition of insanity? Doing something over and over again expecting a different outcome?
Well, thank you Dr. Surgeon, thank you two emergency rooms, thank you doctors and nurses for your help.
I am not insane anymore. I don’t expect a different outcome. I know I will be demeaned, I know I will be left in the waiting room in excruciating pain while people with the sniffles get a treatment room. I know I will have to always have a friend with me, and always carry letters that say “call me 24/7” or “this is an amendment to the records”. I know now that no one will look.
There is no hope.
There is no justice for Three Little Words.
There is no relief from pain.
There is waiting in bed for the heart attack that is a heart attack, for the thing that kills me.
Thank you to all those people for helping me see the Three Little Words and what they actually mean. Thank you for helping me through the idea that there could be a different outcome. I know now—it’s simple really…
You do not deserve care, compassion or even respect. Please go away and die elsewhere.
Welcome to the world of the criminal that can never be redeemed. I have fallen from grace never to rise again.
Three Little Words—untrue words—have destroyed a life.
Ah, the slings and arrows of outrageous fortune. We all have them come winging into our daily life and throwing a spanner in the works (and mixing metaphors in blogs). After what happened in August, I was pretty sure I had seen about the worst I would see in the healthcare field for a long time. Sadly, I was unbelievably, epically wrong.
Let’s back up the story a bit. Last winter, I took a serious fall at work. My right leg, knee and ankle, were injured. So much so I walked with a cane for a long time. I kept trying to not use it because I didn’t want a “crutch” but realistically, by the end of every night I had a big, aching, throbbing leg hanging on the right side of my body. Even with twice weekly physical therapy, the swelling never went down. In September it was as bad as it had been in February. To tell the truth it was getting worse by the day. The thing is no matter how much I try to reduce stress in my life, pain causes stress and then the fun starts. Stress can trigger an esophageal spasm, which presents with the same symptoms as a heart attack, which can lead to emergency room adventures. Since August, just thinking about an ER sends me into a panic attack, so I have been ignoring the severe chest pain, hoping it is just my esophagus and eating nitro like it is going out of style.
After hearing all this, my family doctor ordered an MRI. It went through the insurance dance and I had the MRI done about a month and a half ago. The call from my doctor came the same day as the MRI. My leg was a mess and they were going to send me to a surgeon. I let out the breath I had been holding. Like that night in August, I had proof. The never-ending pain in my leg was not all in my head. There was something wrong. I’ve lost count of the number of times between the MRI and my appointment with the surgeon (which of course took a month and a half to get) that I’ve said I just want the pain to stop. Even if they have to cut off the whole leg, I don’t care. I just want the pain to stop.
Simple right? Leg isn’t working, see the mechanic, get the oil changed and new spark plugs and we’re off and running again. Right? That’s how it works, because doctors are about helping people, right? Stopping the pain, right? Helping you live a better life, right? Right? It’s how it works… Right? RIGHT?!?
And if that sounds a little desperate, it is. As the appointment finally grew near my ability to walk was seriously compromised. I went to the ocean with a friend and couldn’t make it to the beach at one of my favorite places on earth, though I laughed it off and blamed a little phobia. The reality was I knew there was no way I could walk that quarter of a mile and back. No way. I knew if my friend knew that she would one: freak out and try and drag me to a doctor right then and two: not go out and see the beach herself. So I laughed it off, said big waves were scary sometimes and took pictures of the trees, a squirrel and when she got back, we wandered to the car.
So I was counting the days, anxiously waiting for the appointment with the surgeon. I waited—and like a little child planning on Christmas bringing miracles—I held December 5th in my heart as The Day a Solution Would Come, the Day the Pain Would End, the Day of Freedom. And like a child who waits all night for Santa to come out of the fireplace, I was mistaken, betrayed and devastated.
I arrived at the surgeon’s office fifteen minutes early. I was nervous—I have a lot of anxiety tied up in the medical profession these days—but hopeful. This would be The Day that the answer came. I went through the weighing process, the blood pressure, the explanation of half of my prescriptions and why I have them, endured the whole checking-in thing. It was okay, though, because it was The Day.
After all of that, in comes Dr. Surgeon. He shook my hand, introduced himself, but didn’t wait for me to tell him my name. He seemed a little curt and not friendly, but it didn’t matter because this was The Day. He sat down and without talking to me or anything he pulled up first a set of x-rays, then the MRI. He pointed to the knee and flipped the screen through several pictures, telling me what each meant. I’ll make a long story short. My knee is toast. (Which wasn’t really a surprise, I have felt it gritting and grinding for several months. The longer it has gone on the more grumpy those gritting noises have become.)
“So,” I asked. “What can be done?” I was excited, smiling, there WAS something wrong and this was The Day!!
“All we can do for a knee that bad is a total replacement,” said Dr. Surgeon.
I was a little taken aback, I had considered that might be the answer when it came, but I was still surprised. I figured a little here and there and it would be fixed. Completely replacing it was big, huge, it meant all kinds of things—a hospital, recovery, pain. But I was more than willing, because no matter how bad the post-surgical pain was, it would be better than what I have every day. It would be pain, but pain with hope. It would be pain that heals, pain that leads to a life of quality and not quantity. (And with everything going on in my life, quality versus quantity is a big question these days.)
“A whole new knee?” I was scared but excited. It was The Day!!!
“Yes, that’s the solution.” There was a pause, then a smile that I am sure would terrify a cobra. “It’s the only thing that will help.” Again the smile and I started getting uncomfortable.
Smile. “I won’t do them on someone your age. You have to be older.”
“What?” It wasn’t even a question. It was just a squeak of shock and horror.
“You are too young.”
“But, you said…”
“Sorry.” He got up and held out his hand like I was supposed to shake it.
“What do I do?” The words managed to get out past the horrific pain that was shutting off breathing and making my heart hammer in my ears.
“I suggest getting a cane, a disabled parking permit and, oh, you could lose weight.”
Reeling, I answered the last jab—that is what it felt like—he had driving a knife straight into my life. “I have gastroparesis. I barely eat, so the weight thing is problematic.”
“I doubt that,” he said and left.
I was trying very hard not to cry. I walked out of the office and I am pretty sure the staff said have a nice day. I don’t honestly remember. I was in shock. It was supposed to be The Day. The answer to an increasingly unbearable agony, and this… this… surgeon was supposed to help. He was supposed to care. He wasn’t supposed to say “yes there is a fix, but sorry your model doesn’t get the fancy stuff.” He was supposed to have compassion and not condemn me to a daily life that is rapidly becoming unlivable.
December 5, it turns out, was The Day.
The Day I was told to live with pain.
The Day I was told I was going to be punished for my age.
The Day I picked up my cane and let the tears run down my face as I made the way to my car.
The Day I may finally have lost hope.
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.
When does it finally become enough? When do you finally ask it all to stop and cry “uncle”? I’m at a place where I am asking those questions. Why? My feeding tube is loose again. As I write this I am fighting that strange sensation that comes with the displaced tube. I am fighting nausea, knowing vomiting is the worst thing I can possibly do in this situation. I emptied my stomach—which is every bit as gross as that implies, but the nausea is still there. It’s caused by the tube that enjoys wandering.
I realized it was out of my intestine about one this afternoon. I think I actually knew earlier, but I couldn’t face the reality of what that meant. I found my courage and checked—I will spare you the details—and discovered the key factor that meant it was in my stomach again. I called the doctor and then played phone tag all afternoon. I spoke with one group who is unsure what to do—replace it again or move the site. In other words, cut me open and try again. Finally, the call came back from the provider and for some bizarre reason, they scheduled me for a simple x-ray. I suspect the nurse did not relay the bulk of my message again (see previous blog) and the doctor assumed I was just being overly sensitive.
I know I am not. I know I am looking at getting another tube, or another site—or maybe another solution. The problem is, we are running out of solutions. I am at the point of questioning why I even allowed this in the first place. Sure, I was slowly starving, but maybe I could have figured something out. Yes, there were other reasons as well, but maybe I could have figured those out too. I trust my Gastroenterologist. I know he wouldn’t have recommended this step lightly. I know he could never have foreseen this mess.
It’s just becoming too much. I feel like the patient in a hospital drama. No, scratch that, I feel like a character in a fanfic story where the poor characters have hurt piled on hurt until you wonder how they can possibly come out of it whole. I admit I’ve written a few of those over the years, and more than once they didn’t come out of it the same person they were going in. How can you be unchanged?
I don’t know if I can face it again. I don’t know if I can live anything like a quality life with the shadow of a new feeding tube every week or so, which is what is happening right now. I am struggling with the quality of life versus the quantity life question right now. I’ve heard from, more than once, “If you were a dog, they’d put you down”. That is not comforting, especially when I know for a fact for most people that would be true. They would end the suffering of the poor animal that couldn’t eat, that was in continual pain, that was nauseous all the time, that couldn’t star correctly hydrated. Where does that leave me?
There is no cure for gastroparesis and esophageal spasm. There are “comfort” measures—like the amazing migrating tubes. Only they are not comforting. They are making me question my own decision making. They are making me ask myself “What is the life I want to live?” It’s a hard question. Where do I draw the line between living a quality life and living a longer life?
Right now, though, all I want to do is cry uncle. I want to find the one writing this story in the comfort of their office or bedroom and tell them to stop. Let the hero rescue me, let me drive off into the sunset with hope and the music blaring. I know that is unrealistic, but sometimes it comforts me to think it could happen.
Especially now. What do I do? I don’t know, this time I really don’t know.
Something changed for me last week. I have been ill off and on for the last ten years and now I have the constant companions of gastroparesis and esophageal spasm. I’ve thought a lot about life and death through these years. I’ve thought about the slow decline that a body can go through and how eventually it can fail. Even as I thought about it, I never really thought the word, never tied death to it all. Yes, I know people are dying, I’ve admitted fear as I have faced repeated placements of a feeding tube that won’t stay put. I’ve handled trips to the ER in pain, just wanting it all to stop. But I never really looked at that word as applying to me unless I made a drastic choice.
Until last week.
Someone else actually made the choice. To make a long story of medical ineptitude short, I came close to partying with the Reaper. Very close.
It started with feeding tube placement number five (in as many weeks). The doctor who did the fifth one added something he felt would help keep the ever-migrating tube happily in my intestine. He was a DOCTOR so I trusted him. When I was back the next week for number six, the something was left in place. Since that fifth tube, I had been feeling worse and worse. After tube six, I headed downhill fast.
I thought it was dehydration, it had been very warm, and it had been hard to keep up on the liquids. Finally, I got to the point where I felt so bad, I called the doctor. It’s hard for me to make a call like that. I worry I am overreacting, I worry there is nothing wrong. After going back and forth with a “floater” nurse, my doctor’s regular nurse finally called me and I explained what was going on and she seemed confused. Her answer—come in ASAP.
I did. I headed in, feeling awful, feeling like I MUST have done something wrong. It had to be me, right? And more to the point, it was really silly to bother the doctor, I was just dehydrated and I needed to be stricter about getting water into my tube every half an hour or so.
When I was ushered back to the exam room, the nurse took my blood pressure and disappeared. When the doctor came in, I came face to face with reality. It wasn’t me, it wasn’t silly, I wasn’t bothering the doctor—no what I was doing was dying. Right there in the exam room with the ugliest chair on earth, I was facing the Reaper.
I remember apologizing for not figuring out what was going on, and my doctor calmly telling me it wasn’t my fault. The doctor responsible for it was the one at fault. He was the one who should have figured out he was compromising my body. It wasn't my fault. My doctor repeated that many time as he listened to how I felt, looked at the records and got that scary calm the medical profession gets when things are truly bad. I’d seen it on the face of nurses and doctors caring for my mother in the first days after her stroke. That detached calm that lets them function in the face of death.
And there it was, on the face of my own doctor, one of the very few I trust. Someone who always tells me what is going on, no matter how hard it is to hear. He has been frank about every step of this journey. His support has been vital in keeping me sane, and there he was all calm. It worried me. More than that, it terrified me. It’s only because I am stubborn I hadn’t collapsed, if I’d ignored it for another day I WOULD have collapsed. Greetings, Mr. Reaper.
I’ve thought a lot about where this illness will lead. As I live day-to-day with nausea, with the feeding tube that in a way now controls my life, with pain. I’ve thought about how bad things can get as the list of people dying with gastroparesis grows. Funny, though, even as I thought about it, even as I mulled over the period at the end of the sentence, I don’t think I every really saw it sitting there at the end of my sentence. That word.
Now I do. It is very real. It is right there and it can be something as seemingly innocent as that something. I’ve heard everything is brighter and better when you come through a serious situation. I’m not sure about that. Yes, I hear the birds and smell the flowers, I enjoy a cup of coffee when I can and listen to the rain on the roof. I always have, and that will never change. What has changed is almost indefinable. It’s a shift, a change in the horizon.
I’m still here. I plan on being here, I have admitted I am afraid of where my illness will lead, but I’ve never looked that closely at the face of the Reaper, never thought about how close he really is to me. Waiting, sitting in exam rooms and the office, the couch at home and the bed I sleep in.
Many people have told me “everyone dies” to comfort me, or “sure, this is going on with you—but I could get in a car wreck tomorrow.” All that is quite true. In fact, I could get in a car wreck tomorrow, but that is not something you can worry about too much. I live within view of a volcano, and not too far from another that blew its top in 1980. We’ve had earthquakes, I was in a plane on the edge of a tropical storm and I’ve lived in tornado country. I don’t worry about those things. I don’t see them as threats, they just are.
This illness is a threat. It can be subject to the whims of a simple medical mistake. Maybe I need to think of it as a volcano or an earthquake, but that is hard as I listen to the pump on the feeding tube. This is every day, every moment.
Are things brighter after nearly meeting the Reaper? The world is always bright, full of life and beauty. I came away from that moment thoughtful, finally looking at that sentence, at the ending that is sitting there. Where the end is written I’m not sure. I just know that now that word is there staring back at me.
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.
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.