A funny thing happened on the way to the surgeon that I think not only shows why my fight to change my records is so hard, but lack of attention to details by the medical community, in general, that is stunning.
I knew someone once who said “we accuse others of our faults”. I never subscribed to that—until the other day during an appointment with a doctor. Of course, when it comes to the medical profession, I am a more than a little suspicious these days.
A little background on the story—in January 2013 I fell at work. The injury hasn’t healed and led to the visit with Dr. Surgeon and his refusal to fix my knee. The fall also injured my ankle and I spent most of last spring and summer in physical therapy with the PTs saying “the swelling should be getting better”. It never did, and I was referred for an MRI. Somewhere along the way, the paperwork got crossed and the MRI for my ankle got lost and I ended up with my knee scanned and the appointment with the warm and caring (not) Dr. Surgeon who told me to get a cane.
Fast forward to two weeks ago. After going over it with my family doctor, a referral to a podiatrist was arranged. I made the appointment somewhat hesitantly, considering all that’s happened lately. The receptionist was friendly, so when I arrived it was a little less scary. I also had someone with me, just in case Dr. Ankle Guy turned out like Dr. Surgeon.
After filling out the paperwork, we were ushered back and a few minutes later Dr. Ankle Guy came in. He seemed friendly, smiled and shook our hands. He asked if we’d seen “the game” because if you live in the Northwest and didn’t watch the Super Bowl it amounts to a crime. I said I was working and he laughed. He said he was glad there were two people there because patients only hear twenty percent of what a doctor says, so there was a good chance we would remember forty percent. I laughed because he seemed nice and I was more at ease than I have been in a long time—even though I was in more pain than usual since I didn’t want to take ibuprofen and mask symptoms/swelling in the ankle that he would need to see.
I described the fall, and told him about the pain, swelling and other fun things (it sounds crunchy sometimes). He poked and prodded at it. He asked if it felt strong, I said no. He tugged at, I grimaced. He moved it around, it crunched. He hmmed and nodded and all those other mysterious doctor things they do when examining a patient.
Here comes the fun part.
He leaned back and smiled. It’s swollen, there is some structural issue going on with it. I nodded, glad that I wasn’t crazy. There was something wrong! (Which would be bad in most cases, but anyone who has read my blogs knows this is not true in my case.) He was still smiling when things took an odd turn. He said he suspected my doctor had sent me there for an MRI, but since the injury was on the 26th of January, I had to expect pain and swelling and weakness in the joint. So, says he, and MRI is NOT warranted …
I broke in and said January 26th 2013.
Without even missing a beat he said “So an MRI is definitely warranted. We need to see what’s going on. We will get an x-ray today, then get an MRI as soon as we can.” My ankle was given a more thorough going over. More hmmms and ah has. He didn’t really say much more, except hoping it was something deep rather than something with the ligaments. After shaking our hands again, he left to order the tests.
I like Dr. Ankle Guy, he seems like he knows what he is doing, but after his pronouncement that patients only hear twenty percent, I wonder how he managed to miss the fact my injury was in 2013. I will say, unlike other doctors, he was willing to correct his mistake. He did listen to me, and once he realized it was an OLD injury, he was very attentive.
All of that is very nice. However it doesn’t change the fact he missed the 2013 that was not only in my chart but was on the sheet I filled in when I came in. The sheet he had in his hand. The sheet I wrote “Fall in 2013, right knee and ankle” and on the other side “Ask me about my files” hoping to cut off the Three Little Words at the bud. It seems I didn’t need to, because he hadn’t read it at all.
In the midst of this fight for my health, for my right to be treated fairly, it was a blow that a doctor that did listen (finally) nonetheless hadn’t paid any attention to what I had just handed him. It makes the whole idea of writing a long amendment to my records and putting it in front of a tribunal pointless. How can you fight this kind of inertia? This lack of attention to details that could, in fact, drastically change the treatment options for a patient? There is a big difference between an ankle sprained two weeks ago and an ankle that is still damaged and swollen more than a year later.
And that, in comparison to everything else is a small thing. Does it hurt? Yes. But, unlike so much else, I think I am getting help this time, in this small area. Whether or not it gets all the way better, I don’t know yet. I still have a knee to contend with on that leg.
I guess what is bothering me is how easily things are missed, and how easily things become blown out of proportion. Risk Management told me that they can only remove information if it is for the wrong patient. I said, well, maybe the doctor who put the Three Little Words in my file had the wrong patient. It was a very busy night. She said that kind of thing didn’t happen that often and then, here I am, telling you about a doctor that didn’t look at a file or a handwritten information sheet that was crucial in diagnosis and treatment. He was gracious about it, embarrassed, and even blushed.
Not so with Risk Management. They said they were calling me back. I have heard nothing. They said they would forward notes from my regular doctors to Dr. Surgeon and see if he will AMEND (not remove) the Three Little Words. I haven’t heard a thing. I was supposed to have a referral for a second opinion on my knee. They were making the appointment, then said “oh, we need to run your file past the doctor first.” And, you guessed it, no call back.
It’s killing me. I am not being overdramatic. I have been getting increasingly ill over the last few weeks, my chest pain is a nightly terror. I still haven’t called 911. Even after an appointment with my family doctor, and a prescription for antibiotics, I am not feeling better. So, this leads to some ugly things—at least in my world. What if I need a referral? What if I need to go to the hospital? What are the chances that anyone will look at me? I have a long list of verifiable illnesses on record, and still they just see Three Little Words.
I am lucky with Dr. Ankle Guy. His lack of attention probably saved our patient/doctor relationship. He at least was willing to admit a mistake.
But all those others, the ones who haven’t called, the ones who haven’t changed their minds, the ones who ignore a list of verifiable illnesses—what do I do? I am so terrified by all of this that when I threw my back out a week ago, and could not walk, I refused to call for medical help. I didn’t want it to look like I wanted pain medication. I hesitated to report any illness to my doctor—until I was forced to—because I don’t want any black mark on my record. Nothing that looks remotely like the Three Little Words.
I am slipping into despair. Those Three Little Words are coloring everything in my life. I live in fear of doctors’ visits—who knows what has been going on behind the scenes. I live in fear of hospital stays.
Fear, I think that sums it up. It’s become a witch hunt. I am branded, followed and harassed. I am denied the care of the rest of the population. And, now, after the visit with Dr. Ankle Guy, I know that no words I write to refute my records will matter. They will see Three Little Words, finalize the witch hunt and leave me with nothing.
And in this case, nothing is really something, because it’s costing my life.
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.
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.
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.
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.
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.
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.