from my journal: September 2nd, 2010
Is it Thursday or Friday? I don't know and frankly, don't care. The nights melt into one another as the same routine commences. I've become familiar with the run of nighttime tv shows on comedy central. I can't seem to get myself to shut the tv off. I've never been scared of the dark but I'm uneasy with hospital sounds as my lullaby. The gentle ticking of my IV pump, the nurses shuffling outside my door in their tennis shoes, and the deep wet cough from the man in the room next door.
I try not to think about this place in its totality. Where it is that I am, this place that has become entirely too familiar in my young life. The TV doesn't erase the reality of my situation but it distracts me temporarily.
3:00am. The pain in my belly announces itself loudly now as the last dosage of medication leaves me. I could care less this time, because the pain in my face is overwhelming. There is a tube taped to my cheek and nose that snakes its way up my nostril and down into my stomach. This is the fourth time I've experienced the nasogastric tube (the third this year) and the first time it's caused this much pain. My sinus, my ear, my eye, and the teeth on the left side of my face stab in synchonized pattern. I try not to cry but soon my cheeks are swollen again with hot tears. My hands are poised on the tube and my instincts are ready to take over and pull it out on my own. But right on schedule, a nurse (is it Anna or Amelia?) arrives with two syringes in her hand. IV dilaudid and because it makes me itch untrollably, IV benedryl.
When Dilaudid enters your IV it hits you like a ton of bricks, first in the face and then more gently as it traverses the length of yourr body. IV benedryl hits my chest until I cough profusely, and then it lulls me back immobilzed.
It is pacifying and yet for a few minutes I try not to fall asleep. I don't like feeling drugged, but for this first 20 or so minutes of the dosage, I feel no pain. I don't want to miss it by being asleep, so I use the controls to raise my bed. and here I am, writing. It probably doesn't make any sense. In the morning I might not remember writing this. But it doesn't matter. Right now it's real. I'm really sitting here, really 26 years old and hospitalized for the 8th time in 2010 for a rare disorder I shouldn't have. Someone once said if you're not feeling good, smile. If you pretend to be happy, you will be.
I try and the fake smile pulls at the tape holding the NG tube in place and I clamp my face in pain. It doesn't work. I'm still here and I'm still sick.
Why?
On Monday night At 9:00, as my husband and I sat on the sofa watching a movie, the phone rang. Surprisinly, the voice on the other end was not that of an inconsiderate solicitor as I had expected, but that of my gastroenterologist, with whom I had had an appoinment earleir that afternoon.
"Your scans came back. I'm very concerned with the amount of distention caused by the ileus. You need to be admitted to the hospital as soon as possibe.
Having been recently discharged from another hospitalization for the same problem, I dreaded having to go back. Although he finally allowed me to sleep at home, I walked into UWMC with my robe and a frustrated scowl. I knew what I was about to face: my absolute and dreaded nemesis of all that I have ever had to face in my four year journey with Gastrointestinal paralysis: the Nasogastric (NG) tube. I am normally a decent patient, but the NG triggers a visceral "panic" button. Knowing this, the kind nurses sedated me as much as they possibly could. They assured me they would make the process as easy as possible. Still, I had to fight back frightened and frustrated tears.
I drank a small vial of lidocaine syrup, which immediately numbed the back of my throat. The nurses sprayed more lidocaine into my nostrils, and lubricated the tube with more so that placement would elicit a minimal amount of gagging. Then I leaned forward, was held still by one nurse while the other looped the tube up around the nasal cavity, and then (with me helping by swallowing small bits of water at a time) threaded it down the throat and into my stomach.
It is impossible to have an NG placed without you looking as undignified as humanly possible. My nose bled profusely, my eyes teared up (as the tube seemed to pierce my sinus) I drooled, coughed, gagged, and spit out saliva. Then to make matters worse they tape the tube to your nose and face with gigantic bandages. Then they hook the tube to a clear vaccum container so tha it displays the green colored sludge it pumps out of your stomach for all to see.
Unfortunately, the NG accidentally blocked my sinus cavity and it grew very painful rapidly. Although I normally have a very high tolerance for pain (out of an unfortunate amount of practice), this was unbearable and greatly surpassed the abdominal pain for which I was being treated for. Despite being given IV dilaudid as quickly as I was metabolizing it, I found myself frequently in hysterical tears: I could only sleep with ice packs strapped to the left side of my face, and even then it was fitful at best. I understood that it was necessary to have the tube placed, but I was on the verge of pulling it out myself, and at one point I threatened that to one of the nurses.
"You might have it taken out this morning, during your procedures" she said "so just try to endure until then."
The procedures she was referring to were an endoscopy, a colonoscopy, and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to see if there was an obvious cause to the sudden progression of my intestinal failure. I don't know if anyone has ever before been so excited about having these performed, but I watched the clock like a child waiting to go to Disneyland. Being in as much pain as I was in, I couldn't wait to go under anesthesia if only for a few hours of rest from the nagging pain. I watched one of the nurses inject the sedatives, and then watched the room grow very blurry before I fell asleep. Whe i finally woke up later that night, the NG tube had been pulled out. The rest of the hospital stay was much easier, and I was discharged yesterday afternoon with a deep sense of gratitude for both being discharged, and for having a medical team that truly cared for my wellbeing.
Several days later I am still having a "hospital hangover": the cessation of IV meds and fluids and the realization that I once again depend on myself to get the food and fluids I need to thrive. It's not as easy as it sounds. This is the first time in my history of having these diseases that I am not able to feed myself well, and this fact became abundantly clear when I weighed myself and found a 20 pound difference than the weight I carried when I was admitted to the other hospital I was in two weeks before.
As such, I am truly exhausted both in body and spirit. I returned to work today a bit (okay...slight understatement) moody. I knew everyone would ask how I was doing, and I hate answering that question. I know what they're looking for. "I'm doing much better, thanks" and it isn't coming because it isn't true and I refuse to lie for the sake of comforting other people's uneasiness with chronic illnesses. At the same time, however, saying "I feel like crap" -though true- doesn't endear people to me. So as a happy medium I find myself using worn-out euphemisms such as "Well I'm here so that's a good sign" or the slightly more imagery-laded "Well I don't have a tube stuck up my nose anymore so I guess I'm hanging in there."
Suffice it to say this day ended with me storming off to my car because of one of my coworker's incessantly complaining about her 'horrid' life in which her greatest antagonist is her relentlessly frizzy hair.
I'm not a fan of being a one-upper. Nobody likes a one-upper, but I've definitely had to bite my tongue recently as in the wake of severe pain, unimaginable discomfort, starvation, dehydration, fatigue and weakness, fainting, internal bleeding, and organ failure, I tend to find a lot of people's problems trivial at best, and incredibly annoying at worst.
Yes there are plenty of people with real problems, and yes there are countless people who have it far worse than I. But I don't regret mocking the girl crying over the frizzy hair. or the person who calls getting a cavitied tooth driiled 'major surgery'.
Was I like that before I got sick? I remember griping about college registration, all-nighters, organic chemistry labs, and Albany State's poisonous attempt at cooking. But I never remember thinking my life sucked as a result of those. (Okay....maybe the food part...)
Oh well. I'll get over it eventually. Maybe. I promised my husband I would stay out of the hospital this week: the first in about five if I follow through with that vow. At my age it shouldn't have to be a difficult promise to keep!
--
-Erika L. Mott-
(253) 239-4205
Tuesday, September 7, 2010
Saturday, May 8, 2010
F----k it
I cannot keep up with my own emotions. One second I want to lash out irrationally at the world, and the next I find myself with that aggressive "I dare you to stop me" attitude that has been so good at helping me survive these last few years.
I feel awful. I'm sick of saying it. For once, just one day even, I want people to be able to ask "How are you?" and not cause me to stop in my tracks and have to deal with the decision to lie for their sake, or tell the truth for mine. Because everytime in the last two months that I've told someone I was feeling well, I lied. Sometimes I would brush around the lie with semi-truth/vague ommisions such as "better than yesterday" or "as well as I can expect." What I really want to say, however, is the truth: I feel awful and don't know how to meet the expectations presented to me by my own life.
I wish people knew. Knew how much effort it takes to do everything I do. Just for a moment. But since they don't, maybe it's time for me to move on from my probably self-induced isolation.
Fuck it.
I'm back in the gym. I can't keep waiting to feel good again to do the things I want to do. Let them do what they want to me, I'm done putting my life on the shelf waiting for things to improve. They might not. and in the meantime, I'm letting a hell of a lot of time pass with my consent. and so begins another competition prep. I want that feeling back; the feeling of my body cooperating with me rather than betraying me. The feeling that my limitations are in themselves limited in what they can stop me from. Without further ado, it's time to reintroduce myself to the world as the figure competitor that I know I am. I WILL be competing at the 2010 Ironman. Even if I do have more of my organs removed and have an ileostomy bag badaged to my side. Or a longitudinal scar outlining my linea alba. My scars are my testimony and not an embarrasment.
Fuck it.
and I apologize for the language. but if that's what you've focused on in this passage, then you missed what it was I was actually saying.
See you on the stage at snoqualmie casino, Octoner 2nd. I'll be the one winning.
I feel awful. I'm sick of saying it. For once, just one day even, I want people to be able to ask "How are you?" and not cause me to stop in my tracks and have to deal with the decision to lie for their sake, or tell the truth for mine. Because everytime in the last two months that I've told someone I was feeling well, I lied. Sometimes I would brush around the lie with semi-truth/vague ommisions such as "better than yesterday" or "as well as I can expect." What I really want to say, however, is the truth: I feel awful and don't know how to meet the expectations presented to me by my own life.
I wish people knew. Knew how much effort it takes to do everything I do. Just for a moment. But since they don't, maybe it's time for me to move on from my probably self-induced isolation.
Fuck it.
I'm back in the gym. I can't keep waiting to feel good again to do the things I want to do. Let them do what they want to me, I'm done putting my life on the shelf waiting for things to improve. They might not. and in the meantime, I'm letting a hell of a lot of time pass with my consent. and so begins another competition prep. I want that feeling back; the feeling of my body cooperating with me rather than betraying me. The feeling that my limitations are in themselves limited in what they can stop me from. Without further ado, it's time to reintroduce myself to the world as the figure competitor that I know I am. I WILL be competing at the 2010 Ironman. Even if I do have more of my organs removed and have an ileostomy bag badaged to my side. Or a longitudinal scar outlining my linea alba. My scars are my testimony and not an embarrasment.
Fuck it.
and I apologize for the language. but if that's what you've focused on in this passage, then you missed what it was I was actually saying.
See you on the stage at snoqualmie casino, Octoner 2nd. I'll be the one winning.
Thursday, April 29, 2010
Three brief days of freedom and I once again find myself at Ten East, in the very same room I was after my most recent surgery, snd three doors down from the room I called home this past weekend. Obviously, I am not feeling well. This week at work was challenging to say the very least. I was still in pain, and still very much fatigued. Yesterday I called my sugeon's office to ask for advice on how to manage the pain, and the answer I received was to re-check myself into the hospital.
I won't deny that I was an emotional wreck as I lied on the cold emergency room gurney. I'd had the urge to cry throughout most of the day; excusing myself mid-afternoon to my car to have a few minutes of alone time. My temper was short and I found myself cursing and flining objects around in the lab. Clearly I was not at my best but it wasn't until I was in the ER that the floodgates opened and I cried.
I don't cry as often as I'd like to which may sound strange to most. For me, however, the act of purging upset that was formerly locked up inside is not only copascetic but totally necessary to remain sane in the wake of medical burden. The thoughts repeating in my mind were self-absorbed and childish: "What the ___ did I do to deserve this?? I'm only 25 effing years old it's not fair! I don't want to do this anymore! I want to be well. I want my husband to not have to carry the stress of caring for a chronically ill wife. I want to get back to being me; a person defined by accomplishments and not by an illness most people have never heard of."
Then the nurse arrived with dilaudid and I felt as ease; ready to deal with my body and all of the challenges it presents once more. Today I met three separate doctors from the clinic that my first surgeon worked at. They are concerned I no longer have any residual function in the remainder of my large intestine. They will get me to a neutral point before discharging me, and then these next few weeks will find me returning to the colorectal clinic assessing the fate of my colon. The general consensus seems to be that taking it out is my only remaining option. As this is very extensive and would require the temporary use of a colostomy, my husband and I will be traveling to the Mayo clinic for a second opinion just to be sure it is the best course of action. In the meantime, I'm kind of at a loss as to how to keep up with my own life. Though not indifferent to my own pain, I do feel a kind of complacency at the moment. Perhaps it is the dilaudid. But being surrounded by a wonderful husband, amazing friends and family, and a compassionate medical staff doesn't allow for melancholy.
It is now 9:15 and the meds are taking me down. I'm ready for a nice long sleep-albeit interuppted every two hours- and possibly a discharge in the morning.
I won't deny that I was an emotional wreck as I lied on the cold emergency room gurney. I'd had the urge to cry throughout most of the day; excusing myself mid-afternoon to my car to have a few minutes of alone time. My temper was short and I found myself cursing and flining objects around in the lab. Clearly I was not at my best but it wasn't until I was in the ER that the floodgates opened and I cried.
I don't cry as often as I'd like to which may sound strange to most. For me, however, the act of purging upset that was formerly locked up inside is not only copascetic but totally necessary to remain sane in the wake of medical burden. The thoughts repeating in my mind were self-absorbed and childish: "What the ___ did I do to deserve this?? I'm only 25 effing years old it's not fair! I don't want to do this anymore! I want to be well. I want my husband to not have to carry the stress of caring for a chronically ill wife. I want to get back to being me; a person defined by accomplishments and not by an illness most people have never heard of."
Then the nurse arrived with dilaudid and I felt as ease; ready to deal with my body and all of the challenges it presents once more. Today I met three separate doctors from the clinic that my first surgeon worked at. They are concerned I no longer have any residual function in the remainder of my large intestine. They will get me to a neutral point before discharging me, and then these next few weeks will find me returning to the colorectal clinic assessing the fate of my colon. The general consensus seems to be that taking it out is my only remaining option. As this is very extensive and would require the temporary use of a colostomy, my husband and I will be traveling to the Mayo clinic for a second opinion just to be sure it is the best course of action. In the meantime, I'm kind of at a loss as to how to keep up with my own life. Though not indifferent to my own pain, I do feel a kind of complacency at the moment. Perhaps it is the dilaudid. But being surrounded by a wonderful husband, amazing friends and family, and a compassionate medical staff doesn't allow for melancholy.
It is now 9:15 and the meds are taking me down. I'm ready for a nice long sleep-albeit interuppted every two hours- and possibly a discharge in the morning.
Saturday, April 24, 2010
hospital
I'm cut off from the world here....sneaking a few moments of precious internet time on the nurse's PC in my room that clearly states it is not for patient use. (why leave a computer unsupervised in the patient rooms in that case? Or at least make it password protected.)
anyway I was admitted into the hospital after a surgical followup on thursday went sour. Three days later I am still sitting here with a bowel obstruction that meds refuse to clear. I am in pain, I smell horribly, one of my two IVs erupted in a torrent of blood, I've been shot half a dozen times, and I've had four tests that are not unfamiliar to me, but also too embarassing to detail on a semi-public blog.
I think it is 90 degrees in the room right now. What the hell. I was supposed to be discharged today with the hope that a medication would stimulate my intestine to push the blockage through.
No luck, and as it turns out, the remainder of my colon seems irreprably damaged. Next week I have to return to the Northwest colorectcal clinic to assess if there is any way to keep the rest of my intestine. My latest surgeon doesn't seem to think so. So what was supposed to be my final surgery may well turn out to be anything but.
anyway I was admitted into the hospital after a surgical followup on thursday went sour. Three days later I am still sitting here with a bowel obstruction that meds refuse to clear. I am in pain, I smell horribly, one of my two IVs erupted in a torrent of blood, I've been shot half a dozen times, and I've had four tests that are not unfamiliar to me, but also too embarassing to detail on a semi-public blog.
I think it is 90 degrees in the room right now. What the hell. I was supposed to be discharged today with the hope that a medication would stimulate my intestine to push the blockage through.
No luck, and as it turns out, the remainder of my colon seems irreprably damaged. Next week I have to return to the Northwest colorectcal clinic to assess if there is any way to keep the rest of my intestine. My latest surgeon doesn't seem to think so. So what was supposed to be my final surgery may well turn out to be anything but.
Friday, April 9, 2010
quickie
I forgot what brought the subject up, but one of my doctors once informed me that people with chronic illnesses actually grow despondent and depressed if they are 'miraculously' cured or if they favorably respond to treatment such that they resume a normal quality of life.
I hated him in that moment. The message I obtained from that comment was that I should derive my identity and a sense of purpose from having a medically refractory barrage of diseases.
"I think I'd get over that pretty quickly," I said, voice dripping with sarcasm and heavy disdain. There has not been one day since being diagnosed with Gastroparesis, CIP, Lupus, and Antiphospholipid Antibody Syndrome in which I have not felt the injustice of having to bear such a ridiculous burden at such a ridiculously young age. I have looked far and wide for relief, and there have been times where things were under control enough to catch a glimpse of myself sans-sickness. I like that person, and, frankly, I've missed her.
Though I find no redeeming value in astrology, I can't help but notice some accuracy in my being a Gemini. I am indeed two people: I am a victim of chronic illness forced upon me by the environment of my youth. At the other end of the spectrum -the healthy end- I am ambitious, self-confident, more in tune to the needs of others, and generally adventurous. The patient is much less self-assured as a result of suffering from an illness that people misunderstand and label incorrectly. (For instance, I do NOT have IBS. IBS is a 'functional' GI disorder and not life-threatening, whereas GP/CIP-DTP, SLE, and APLS -Good God enough with the acronyms already- are.) So I worry what my peer's perceptions of my illnesses are, and wish I could lay it our in detail what it is to suffer from these unfathomably difficult disorders. What it's like to live two lives so blatantly apart from each other.
Three weeks ago I finally had surgery (hopefully my last) to reconstruct the top of my stomach and to repair a hiatal hernia that came into being as a result of excessive GP flaring and a congenitally deformed diaphragm. I am expected to come out of the other side of recovery with a moderately functioning stomach: enough so that I may be given a chance at living a normal life.
I am brought back to that strange afore-mentioned conversation with my doctor and only now do I see any truth to those words. In a way, illness has shaped me into the person I've become, whether I wanted it to or not. I've lived with it every day; have endured things both small and grand in the wake of debilitating pain and nausea. I showed my doctors their error when they told me I'd never be able to compete with my 'disability'. I've held a full time job, endured a shitload of surgery, and despite the fact that several factors have led to my being a bit 'quirky' I showed myself that I can endure just about anything and still come across as victoriously strong.
I will always carry the diagnoses of GP, CIP, SLE, and APLS, however dormant they may become. But the thought of being able to live my life without their presence constantly demanding my attention is wondrously overwhelming. Will I become despondent and depressed as mentioned by my doctor? No. Will it be a challenge to relearn to live at the level of expectations imposed on a perfectly healthy adult? Absolutely. But if I've learned anything in the last four years, it's that challenge suits me just fine.
And I am more than ready for this one.
I hated him in that moment. The message I obtained from that comment was that I should derive my identity and a sense of purpose from having a medically refractory barrage of diseases.
"I think I'd get over that pretty quickly," I said, voice dripping with sarcasm and heavy disdain. There has not been one day since being diagnosed with Gastroparesis, CIP, Lupus, and Antiphospholipid Antibody Syndrome in which I have not felt the injustice of having to bear such a ridiculous burden at such a ridiculously young age. I have looked far and wide for relief, and there have been times where things were under control enough to catch a glimpse of myself sans-sickness. I like that person, and, frankly, I've missed her.
Though I find no redeeming value in astrology, I can't help but notice some accuracy in my being a Gemini. I am indeed two people: I am a victim of chronic illness forced upon me by the environment of my youth. At the other end of the spectrum -the healthy end- I am ambitious, self-confident, more in tune to the needs of others, and generally adventurous. The patient is much less self-assured as a result of suffering from an illness that people misunderstand and label incorrectly. (For instance, I do NOT have IBS. IBS is a 'functional' GI disorder and not life-threatening, whereas GP/CIP-DTP, SLE, and APLS -Good God enough with the acronyms already- are.) So I worry what my peer's perceptions of my illnesses are, and wish I could lay it our in detail what it is to suffer from these unfathomably difficult disorders. What it's like to live two lives so blatantly apart from each other.
Three weeks ago I finally had surgery (hopefully my last) to reconstruct the top of my stomach and to repair a hiatal hernia that came into being as a result of excessive GP flaring and a congenitally deformed diaphragm. I am expected to come out of the other side of recovery with a moderately functioning stomach: enough so that I may be given a chance at living a normal life.
I am brought back to that strange afore-mentioned conversation with my doctor and only now do I see any truth to those words. In a way, illness has shaped me into the person I've become, whether I wanted it to or not. I've lived with it every day; have endured things both small and grand in the wake of debilitating pain and nausea. I showed my doctors their error when they told me I'd never be able to compete with my 'disability'. I've held a full time job, endured a shitload of surgery, and despite the fact that several factors have led to my being a bit 'quirky' I showed myself that I can endure just about anything and still come across as victoriously strong.
I will always carry the diagnoses of GP, CIP, SLE, and APLS, however dormant they may become. But the thought of being able to live my life without their presence constantly demanding my attention is wondrously overwhelming. Will I become despondent and depressed as mentioned by my doctor? No. Will it be a challenge to relearn to live at the level of expectations imposed on a perfectly healthy adult? Absolutely. But if I've learned anything in the last four years, it's that challenge suits me just fine.
And I am more than ready for this one.
Sunday, March 28, 2010
recovery
I am overwhelmingly stubborn for my own good. 12 days post-op from a major stomach surgery and all I want to do is prepare for a fall competition, continue my landscaping project, attempt to keep my house clean despite the three pets....in short everything I'm physically not allowed to do. I'm an impatient patient, and I just want to be well.
Most people would be surprised at how mobile I really am. I did in fact pull up 96 gallons worth of weeds from my backyard, taken my puppy for multiple walks, run some errands, baked, and shopped for groceries. However, I can only do these activities in short spurts; as my stamina has severely decreased likely to having been put under general anesthesia.
The surgery itself was a breeze. Checked in on the morning of the 16th and was given a bed and an electric blanket to chill under as all of my pre-op bloodwork and IV antibiotics were delivered. At 7:40 I was wheeled into the freezing cold operating room. This is usually the scariest part for me but I was immediately sedated and was just barely consious when the mask was placed over my face. What seemed like a second later, I heard my name called in the PACU.
My abdomen didn't hurt but my neck, shoulders and back were hurting from the gas they pump in to inflate their working area. I was on a self-controlled morphine pump at that point and spent a few hours with my hand permanently poised over the delivery button. After a few hours the pain subsided and I felt amazing considering I'd just been through surgery mere hours beforehand. I was even tolerating the NG tube used to decompress my stomach. Thank God for Morphine.
Since then the pin in my abdomen has been more than tolerable, making this surgery the easiest I have had. (well...the tonsillectomy was easier but in terms of abdominal surgery it has been a cinch.) I decided to stop taking oxycodone early on. My neck still hurts sporadically but now it's nothing 1000 mg Ibuprofen and a heating pad can't control.
The frustrating part of the surgery is my inability to swallow. I was warned it would be difficult, and I was also warned I would lose weight. But it wasn't supposed to be this bad. I can sip on thin liquids every 30 minutes or so, but most of what I ingest gets lodged in the back of my throat, prompting me to spit it out. I can't even swallow my own saliva which is dangerous since it can lead to aspiration.
and the weight loss aspect? 20 pounds in two weeks. Not good! If it was all fat, then fine. But I know the muscle I worked so hard for is being stripped away from me. I'm doing what I can to preserve my muscle store, but at 300-400 calories a day and very little protein (too thick for me to swallow)the effort is probably in vain.
I have an appt with the surgeon this week and he'll evaluate my progress and hopefully sign off on my returning to work. Until then, I'll continue learning to paint, quilt, play the guitar (can't play my flute quite yet) and stare longingly at my garden.
Most people would be surprised at how mobile I really am. I did in fact pull up 96 gallons worth of weeds from my backyard, taken my puppy for multiple walks, run some errands, baked, and shopped for groceries. However, I can only do these activities in short spurts; as my stamina has severely decreased likely to having been put under general anesthesia.
The surgery itself was a breeze. Checked in on the morning of the 16th and was given a bed and an electric blanket to chill under as all of my pre-op bloodwork and IV antibiotics were delivered. At 7:40 I was wheeled into the freezing cold operating room. This is usually the scariest part for me but I was immediately sedated and was just barely consious when the mask was placed over my face. What seemed like a second later, I heard my name called in the PACU.
My abdomen didn't hurt but my neck, shoulders and back were hurting from the gas they pump in to inflate their working area. I was on a self-controlled morphine pump at that point and spent a few hours with my hand permanently poised over the delivery button. After a few hours the pain subsided and I felt amazing considering I'd just been through surgery mere hours beforehand. I was even tolerating the NG tube used to decompress my stomach. Thank God for Morphine.
Since then the pin in my abdomen has been more than tolerable, making this surgery the easiest I have had. (well...the tonsillectomy was easier but in terms of abdominal surgery it has been a cinch.) I decided to stop taking oxycodone early on. My neck still hurts sporadically but now it's nothing 1000 mg Ibuprofen and a heating pad can't control.
The frustrating part of the surgery is my inability to swallow. I was warned it would be difficult, and I was also warned I would lose weight. But it wasn't supposed to be this bad. I can sip on thin liquids every 30 minutes or so, but most of what I ingest gets lodged in the back of my throat, prompting me to spit it out. I can't even swallow my own saliva which is dangerous since it can lead to aspiration.
and the weight loss aspect? 20 pounds in two weeks. Not good! If it was all fat, then fine. But I know the muscle I worked so hard for is being stripped away from me. I'm doing what I can to preserve my muscle store, but at 300-400 calories a day and very little protein (too thick for me to swallow)the effort is probably in vain.
I have an appt with the surgeon this week and he'll evaluate my progress and hopefully sign off on my returning to work. Until then, I'll continue learning to paint, quilt, play the guitar (can't play my flute quite yet) and stare longingly at my garden.
Saturday, March 20, 2010
recovery begins
My passages are shortest when i have the most to say.
Large doses of narcotic painkillers will prevent me from getting carried away. It will also likely prevent me from making coherent sense.
I am a bad candidate for having a chronic illness largely because of a congenital inability to sit still for large periods of time. I had another surgery on Tuesday (the one that has been in the works for about a year) and I have been stubbornly refusing to acknowledge that I'm compromised both physically and mentally (thanks to the oxycodone) and shouldn't be doing as much as I can.
I haven't even finished a week of my exile from work and I'm stricken with a post-operative ennui. I took a notepad yesterday and sketched my landscape, then bought bulbs and seeds online. I didn't do any gardening; my husband has seen to that, but I spent hours walking back and forth in my yard to observe.
On friday two of my friends from work made the trip down here to spend some quality girl time. To prepare, I spent the majoirty of the day cooking and cleaning in preparation of their arrival.
My husband was not happy. He had a right to be mad: I am impossible to reason with while under the influence of pain killers. The mental impairment paired with not being able to feel pain can lead to bad judgment. But then that stubborn streak in me would take over and disregard his warnings. I hate feeling useless and dependent.
But I promised him I'd take it easier today, which is why I'm now sitting at the PC slowly sipping coffee and listening to Freelance Whales. (one of my new favorite bands out of NYC)
I can't really give an indication one way or another in terms of how recovery is progressing. This morning I woke with an unbearable sharp pain in my right side. It almost feels like a cracked rib, and is likely costochondritis, but I'm paranoid due to the pain's proximity to my liver. Last surgery I clotted badly in my liver. This time they knew to give me injections of heparin every few hours, but it's hard to stay on the non-hypochondriac side of the fence given my history.
Eating is a huge pain in the ass. I can eat about 2 tbsp of yogurt before my esopahgus closes off and anything else gets stuck in my throat. I have to spit out about 75% of anything I eat which is both gross and irritating. A study done while I was in the hospital showed that the 'wrap' was a little too tight but that it should relax after a couple of weeks. if it doesn't, I'll either have to have a temporary feeding tube, or another surgery to undo the Nissen repair.
Large doses of narcotic painkillers will prevent me from getting carried away. It will also likely prevent me from making coherent sense.
I am a bad candidate for having a chronic illness largely because of a congenital inability to sit still for large periods of time. I had another surgery on Tuesday (the one that has been in the works for about a year) and I have been stubbornly refusing to acknowledge that I'm compromised both physically and mentally (thanks to the oxycodone) and shouldn't be doing as much as I can.
I haven't even finished a week of my exile from work and I'm stricken with a post-operative ennui. I took a notepad yesterday and sketched my landscape, then bought bulbs and seeds online. I didn't do any gardening; my husband has seen to that, but I spent hours walking back and forth in my yard to observe.
On friday two of my friends from work made the trip down here to spend some quality girl time. To prepare, I spent the majoirty of the day cooking and cleaning in preparation of their arrival.
My husband was not happy. He had a right to be mad: I am impossible to reason with while under the influence of pain killers. The mental impairment paired with not being able to feel pain can lead to bad judgment. But then that stubborn streak in me would take over and disregard his warnings. I hate feeling useless and dependent.
But I promised him I'd take it easier today, which is why I'm now sitting at the PC slowly sipping coffee and listening to Freelance Whales. (one of my new favorite bands out of NYC)
I can't really give an indication one way or another in terms of how recovery is progressing. This morning I woke with an unbearable sharp pain in my right side. It almost feels like a cracked rib, and is likely costochondritis, but I'm paranoid due to the pain's proximity to my liver. Last surgery I clotted badly in my liver. This time they knew to give me injections of heparin every few hours, but it's hard to stay on the non-hypochondriac side of the fence given my history.
Eating is a huge pain in the ass. I can eat about 2 tbsp of yogurt before my esopahgus closes off and anything else gets stuck in my throat. I have to spit out about 75% of anything I eat which is both gross and irritating. A study done while I was in the hospital showed that the 'wrap' was a little too tight but that it should relax after a couple of weeks. if it doesn't, I'll either have to have a temporary feeding tube, or another surgery to undo the Nissen repair.
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