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.
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.
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.
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.
How often are we lucky enough to face one of our worst nightmares and come through in one piece? A little while ago, I wouldn’t have considered that lucky, but having faced it—and more to the point, lived through it—I can say I made it. Does it make me less afraid? In some ways it does. I’ve been there, I’ve experienced it, and I am still mostly standing.
When we were last here, I was struggling with the news that I was going to need a feeding tube. I was still resolute in my belief I could make it without one—until I got a new phone. Funny that it would be a piece of technology that would bring everything into such a stark reality but it did. The phone had a calorie counter. I faithfully entered everything I consumed, planning to use it to prove how well I was doing. Only I wasn’t doing well. In fact, I wasn’t doing even close to well.
That led to a doctor’s appointment and the Discussion. The Big One. The feeding tube, and botox in my esophagus in hopes that it would help give me some symptomatic relief from the spasms that were getting steadily worse. So, after talking with my doctor, a wise and caring man, I said yes. It was the hardest thing I’ve done. Once I said yes, things started flying at me. I said yes on a Thursday, the tube was scheduled for Monday. It was so quick, but it was scheduled. I was ready to move on to the next part of my life.
I was nervous as we headed out towards the hospital on Monday. I always am before surgery. When I was a kid, I read a Reader’s Digest story about a woman who had been conscious during surgery. That quickly became one of the top ten things on my “Worst Nightmares” list. I know it’s silly, but every time I am scheduled for a procedure, that article comes back to haunt me. But I comfort myself with the fact I have had several surgeries and nothing even remotely like that has happened.
And then came Monday.
I had a funny feeling things were going wrong when my IV was blown and my hand was red and swelling. However my highly efficient nurse got a new IV started and we were a go. Once into the surgical area, they started giving me sedation. They kept asking if I was feeling relaxed, or sleepy. I kept saying no, and they kept giving me more. Still nothing… Then I felt the cold gel on my belly. I said the sedation wasn’t working. The nurse said he had given me more than most people need. None of that was a comfort when the scalpel cut into me.
My worst nightmare. Awake, someone cutting on me. I screamed. It didn’t stop. Eventually, I was reduced to weeping and asking the nurse to wipe my eyes because the tears bothered me. It was something I could control, so I grabbed onto it and held on though the long nightmare of hell. Time had no meaning. One minute, one hour, one day—it could have been anyone and it would still be an eternity.
It did, finally, end. I was fitted with my new feeding tube and sent up to a room to pass a long, long night. But that’s another part of the story.
I survived. Am I completely untouched by the experience? No, I dream about it. It crops up in my daily life in odd ways. The experience has given me one thing—I have the knowledge of what it feels like, what you think about at a time like that, how you handle the hours after it. I’ve been accused of taking research too far. In this case I agree, but it happened and I can use it. In fact, I will use it. Not just for my writing. I will remember the experience when I feel like I can’t handle something. I made it through one of my top ten nightmares. I can make it through today.
That’s what matters right now—making it through today.
Traveling is an adventure, and not always a good one. I tend to take everything as it comes, but lately, things are rougher than they should be. In January I fell and sprained by right ankle and knee, making the day-to-day existence even trickier than usual. Traveling brings that home in a way that stuns me. I need a wheelchair to make it through the airport. Between my back and my injured leg the gates are just too far away. And that is just the beginning.
I have not spent a lot of time dwelling on my life, although this blog exists to share my experiences. I started it thinking I would share the ups and downs, in hopes that maybe someone else could feel they weren’t alone in their life. We all have problems, we all have issues, we all have life and occasionally it’s hard.
I was in the hospital several weeks ago. After a night in the ER that had me repeatedly asking if I had died and had somehow ended up in hell, I eventually was admitted. The nightmare got worse from there and included a doctor that accused me of drug-seeking behavior, a nurse that treated me like I was an errant child and a horrific drug reaction that led to not one but two endoscopies. The second of which I was conscious for—and that one involved a second stretch of my esophagus.
I tend to not talk about things, or maybe I don’t want to think things are as bad as they really are. Recently though, I came to the conclusion that it’s not how my life stacks up against others. Some have it better or worse—maybe. I say maybe because all experience is subjective. For me, it’s hard. I have attempted to hide, to not let out the truth of my life. The only time I’ve really mentioned it is when I “came out” about having gastroparesis and wrote a fanfic about it. Other than that, I tend to be quiet about it—thinking there are other people who have it a lot worse—but again, reality is subjective.
It was all brought home to me this weekend while I attended Clockwork Alchemy, a steampunk convention in San Jose, California. Because of the gastroparesis, I have had difficulty with many foods for a long time, and anti-nausea drugs are a part of my daily existence. The two esophageal stretches have led to life where I can’t eat solid food. Yes, I admit, I have cheated with a bite or two of something more substantial than food blended in a Vitamix, but every time I have paid for it. Pain, yes, and sometimes that extra special feeling of the food getting stuck half way down—only with me it’s not just a phantom sensation—it is what has happened. Once or twice I’ve spent an hour or more carefully swallowing warm water in the hopes of getting the food down. Usually it works. Sometimes the food decides to leave by a more direct route.
Doing a convention brings home all the things wrong and, in all honestly, takes such a huge toll that I am down one full day post con. Or I try to be. I have a full-time job and after a weekend of no real food and pain endurance, sometimes it all seems like it is too much. I don’t want to complain, but I think sometimes I don’t say enough, so I get into situations that are not healthy in a very real way. I push my body too hard. Somewhere in my head, I am still completely healthy and can handle anything. My heads not off, I have my arms and legs, so I am perfectly fine.
In reality I’m not. And I need to be more open about it. Traveling is exciting, meeting new people is wonderful. I love doing panels and babbling excitedly about my various passions. I also end up in an endurance race that has me wanting to scream uncle after two days. I am nutritionally compromised, my pain level is hard to manage and I just smile and go on.
I’ve decided it’s time to stop. I’ve decided it’s time to talk, and not through the voice of other characters in a fanfic, but in mine. I have a lot going on—is it more than others? Less? I don’t know. I just know this is my life. My food comes from a blender, my back is bad and my hands are numb half the time. My legs go to sleep, my neck never stops hurting. I’m not whining, I’m letting you all in on my life. I try not to complain, but maybe if I did, people would understand why I can’t do just one more panel, or one more con or why at times cranking out three thousand words is a challenge.
It’s a big step, admitting life is less than what I want it to be, but it’s time I made it. Funny that a trip could be the final straw, but it was—at some point this last weekend I realized in order to be healthy I had to admit I was so far from healthy it’s not funny. I need to be able to say no, and let people know why. It’s hard to admit I am not strong, I can’t chew through nails or take down a rampaging horde, but right now I can’t.
I had a fresh apple the other day. That might not seem like such a big deal, but I haven’t had a fresh apple for more than three years. When I was handed the diagnosis of gastroparesis, I read all the literature the doctor gave me then went looking for more. After several days of much research, I came to the conclusion that the best thing would be to stick to a moderate “flare” diet most of the time. From what I read, it seems that a lot of people are told to eat normally until they flare, then hospital, flare diet, and then back to normal. I understand. Food is a very basic thing and telling people—especially Americans—they can’t eat doesn’t go down well. For my own illness, I made the other choice—to change my eating based on the idea that when you are diagnosed with diabetes they don’t tell you to eat normally until you fall into a coma then change your habits. For me it worked.
Did I cheat? Of course I did. I admit it, pizza found its way in, the occasional veggie cheeseburger and fries and I just put up with the bleh that came after. I did notice, as the years passed, I was getting more sensitive and my bouts of “normal” food were getting further and further apart. Luckily, I was already a vegetarian, so when things went really wacky I could still have tofu and rice and not have the “Ewww, why am I eating tofu” problem. Still, I tried to go on, tried to live as normally as possible.
Then esophageal spasm entered my life. Looking back, I think I’ve had it for far longer than the doctors know. Seeing the symptoms now lets me put two and two together with that clarity of hindsight. Still, when the spasm was official it was another interesting adjustment. Most of the time it just feels like my chest is tight, occasionally it explodes into a fantastic eruption that feels just like a heart attack. And knowing I have esophageal spasm doesn’t change that fact. When you call the doctor or nurse hotline and say “I have chest pain, three nitro have not made it better” they will tell you to go to the ER. It’s probably just spasm, as painful as that is, but it could be my heart. Every time, same thing, and every time I have to go—once even saying no and having the nurse hotline call 911 on me. (How embarrassing is that?)
Back to that apple—you see it marks a new point in my life. Good and bad mixed together in a blender. Yes, a blender. That spasm decided it wanted to get worse, I couldn’t swallow without food popping back up whole. It never made it far enough to be an issue of vomiting, nope, it made it less than halfway down and back it came. Sometimes things made it halfway down and just stayed. When I could no longer get my own saliva down comfortably it was time for something that started with an endoscopy and it ended with my esophagus being physically dilated.
The dilation makes things easier to swallow and for about ten hours I thought it would let me eat a little easier again, but then I discovered that solids would kick off a massive back-to-the-ER spasm. So now it’s a blender. I keep telling myself it’s not a feeding tube. In many ways I am actually “eating” better than I was, thanks to the power of a VitaMix, but it doesn’t feel like a step forward right now. It feels like a step into a scary place of many questions.
I am not even sure I want answers right now. I’m terrified of what they might be, what they might mean. For now, I will settle for the blender and the foods I haven’t had in a long time. It’s something. Small though it may be, it is nonetheless something to help in the dark of night when the “what if” monster comes to call.
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.