I really like James Patterson. Every book of his is a lightning fast read. It helps that each chapter is less than five pages. Private Games was no exception.
A mad man has targeted the 2012 Summer Olympics in London. First the chairman of the committee in charge of logistics for the Games is found ruthlessly murdered and beheaded on the eve of the much -anticipated opening ceremony. Peter Knight takes a personal interest in the case when he discovers the victim to be his mother's fiance. During the spectacle of the ceremony that night, a popular track star is poisoned and dies. Thus begins a wild ride as Peter Knight, his employer Private Investigation, and a journalist, try to uncover the truth.
This is very typical Patterson. Fast-paced with more twists and than you would expect. The end is very come from left-field too. Really fun.
Saturday, April 27, 2013
Thursday, April 18, 2013
It All Fell Apart Part Two: Lost Lines, Lost Weight, Found Perspective
So, I finally made it to a room at 5 AM on April 4. I thought I would get to sleep at that point. Not so much. The transport folks transferred me to the bed and then the nurse and tech started doing things to me. First the nurse moved my offending IV to a better position. Then she and the tech put a mattress pad under me the purpose of which I could never figure out. The nurse started doing the typical intake things. She checked my skin, did a social history questionnaire and the other stuff that needs to be done when you're brought to the floor. They also finally stopped the TPN I had come in on. I didn't much care what they did to me as long as they helped me get warm. The good news was my fever was breaking. The bad news was I was having severe shaking chills as a result. I don't think I've ever had chills that bad. My teeth were chattering,my muscles were all tensed to the point that I couldn't move. They piled blankets on me and after a painful two hours, they subsided.
At this point it was nearly 7 AM. Shift change and morning rounds began. Big Academic Medical Center is a teaching hospital That means rounds are a staggered affair. First. you see a medical student, then the intern, then an attending. The med student was the one who did a lot of the work for me. He told me that my heart rate had come down with rehydration but was still high. He seemed encouraged that my fever had broken. He said they'd just observe me until the blood cultures came back. On physical exam we discovered that I had some tenderness over my kidneys. This led him to think that I might have what he called an asymptomatic bladder infection and not a line infection. I know I didn't go to medical school, but wouldn't the fact I had had a fever mean that whatever was going on was symptomatic? Anyway, he finished his exam and left just as the new tech came in to do the first check of my vitals for the day. Any illusions I had had about this being anything other than a line infection were shattered at that point.
My fever was back and my heart rate was back in the 130s. Awesome. Soon, the resident was at my bedside looking perplexed. There wasn't a whole lot he could do until the cultures came back. I settled in to wait for those. In the meantime, I continued to receive broad-spectrum IV antibiotics and fluids since I was no longer getting TPN.\ The reason I continued to get antibiotics is because central line infections can turn deadly quickly. They always err on the side of caution.
Per the GI consulting on behalf of my GI, I could get only IV saline and dextrose for up to a week and be fine. I believed him that time. After taking weeks to be anywhere near human again, I'm regretting following that advice so blindly. The thing is, TPN can't be run through a regular IV. There is a version of it called Peripheral Parenteral Nutrition that can be run through a normal IV. If, heaven forbid, this happens again, I will insist on beginning PPN as soon as I lose my PICC.
Around 1 that afternoon, the medical student came in and said that the cultures had grown staph bacteria. This organism grew on the plastic of my PICC line, even with strong antibiotics on board. The line needed to be removed before we could hope to clear the infection. A few minutes later the resident walked the med student through removing my line and snipping the tip so it could be cultured. I can't remember now whether they cultured the end that had been near my heart, or the outside end. The good news was I was already on the right antibiotics to treat staph. The bad news was that I would be stuck n the hospital until at least Monday. I would need a new PICC as soon as my blood cultures had been negative for two days. The earliest that would happen was Sunday. The thing was the people who placed PICCs weren't in the hospital during the weekends. So Monday it would be.
The rest of Thursday and most of Friday passed rather uneventfully. I had an EKG late on Thursday. I also had orthostatic vitals taken at some point to check my hydration status. I checked out fine.
Late Friday afternoon, I had an echocardiogram to make sure my heart wasn't infected. This is a very real risk of central line infection given the line's proximity to the heart. I am convinced that test irritated the pocket where my stimulator lives. Since that day I have had significant pain in that area. I had Dr. B. check it out before I left since I was on his turf and he said it was fine.
Saturday's labs showed my potassium was low, so Saturday night was spent in tears as I experienced the internal fire that was IV potassium. Sunday was a low-key day. Monday, I had my line replaced and thought I was going home. Turns out my nursing agency had declined to take me back after I was discharged but neglected to say so until a few hours before I was due to leave. So I didn't get homthate until very late Tuesday night.
Since then, it's been a long slow recovery. I lost enough weight that I noticed. We tweaked my TPN formulation pretty substantially this week to help me regain that weight. I am still more easily fatigued than before.
As awful as this experience has been it gave some much needed perspective. Before this, I thought the worst thing that could happen was losing my job. Now I see there are worse things.
At this point it was nearly 7 AM. Shift change and morning rounds began. Big Academic Medical Center is a teaching hospital That means rounds are a staggered affair. First. you see a medical student, then the intern, then an attending. The med student was the one who did a lot of the work for me. He told me that my heart rate had come down with rehydration but was still high. He seemed encouraged that my fever had broken. He said they'd just observe me until the blood cultures came back. On physical exam we discovered that I had some tenderness over my kidneys. This led him to think that I might have what he called an asymptomatic bladder infection and not a line infection. I know I didn't go to medical school, but wouldn't the fact I had had a fever mean that whatever was going on was symptomatic? Anyway, he finished his exam and left just as the new tech came in to do the first check of my vitals for the day. Any illusions I had had about this being anything other than a line infection were shattered at that point.
My fever was back and my heart rate was back in the 130s. Awesome. Soon, the resident was at my bedside looking perplexed. There wasn't a whole lot he could do until the cultures came back. I settled in to wait for those. In the meantime, I continued to receive broad-spectrum IV antibiotics and fluids since I was no longer getting TPN.\ The reason I continued to get antibiotics is because central line infections can turn deadly quickly. They always err on the side of caution.
Per the GI consulting on behalf of my GI, I could get only IV saline and dextrose for up to a week and be fine. I believed him that time. After taking weeks to be anywhere near human again, I'm regretting following that advice so blindly. The thing is, TPN can't be run through a regular IV. There is a version of it called Peripheral Parenteral Nutrition that can be run through a normal IV. If, heaven forbid, this happens again, I will insist on beginning PPN as soon as I lose my PICC.
Around 1 that afternoon, the medical student came in and said that the cultures had grown staph bacteria. This organism grew on the plastic of my PICC line, even with strong antibiotics on board. The line needed to be removed before we could hope to clear the infection. A few minutes later the resident walked the med student through removing my line and snipping the tip so it could be cultured. I can't remember now whether they cultured the end that had been near my heart, or the outside end. The good news was I was already on the right antibiotics to treat staph. The bad news was that I would be stuck n the hospital until at least Monday. I would need a new PICC as soon as my blood cultures had been negative for two days. The earliest that would happen was Sunday. The thing was the people who placed PICCs weren't in the hospital during the weekends. So Monday it would be.
The rest of Thursday and most of Friday passed rather uneventfully. I had an EKG late on Thursday. I also had orthostatic vitals taken at some point to check my hydration status. I checked out fine.
Late Friday afternoon, I had an echocardiogram to make sure my heart wasn't infected. This is a very real risk of central line infection given the line's proximity to the heart. I am convinced that test irritated the pocket where my stimulator lives. Since that day I have had significant pain in that area. I had Dr. B. check it out before I left since I was on his turf and he said it was fine.
Saturday's labs showed my potassium was low, so Saturday night was spent in tears as I experienced the internal fire that was IV potassium. Sunday was a low-key day. Monday, I had my line replaced and thought I was going home. Turns out my nursing agency had declined to take me back after I was discharged but neglected to say so until a few hours before I was due to leave. So I didn't get homthate until very late Tuesday night.
Since then, it's been a long slow recovery. I lost enough weight that I noticed. We tweaked my TPN formulation pretty substantially this week to help me regain that weight. I am still more easily fatigued than before.
As awful as this experience has been it gave some much needed perspective. Before this, I thought the worst thing that could happen was losing my job. Now I see there are worse things.
Sunday, April 14, 2013
It All Fell Apart Part One: Lost Jobs and Long Nights in the ER
It's been awhile. Sorry about that. Life is exceptionally sucky right now.
Remember how I said work was really important to me? Well, I lost that job. A combination of the sequester and my needing to be homebound to get help with TPN led to my being let go. That happened at the end of March.
I spent the last week and a half of March job searching, filing for unemployment, and figuring out how to get my Social Security reinstated. I struggled emotionally to understand how I could be in the position of having to find a job again. It was hard enough interviewing when all I had to contend with were people's attitudes toward my using a chair. Now, I am going to present a whole new set of challenges at some point in the process thanks to GP. Talk about stressful. So things were in major flux.
Then April 3 happened.
I had felt exceptionally tired all day. I didn't think much of it since I'm often really tired. I also had some body pain that was new but I figured was explained by a lowish potassium found on my weekly labs drawn just two days before. As five o'clock neared, I actually took a nap at my desk waiting for my nurse to come. Weird. When the nurse came she unhooked me and I took a shower. I noticed I was weaker and had a harder time transfering than I do normally. Again I chalked it up to being tired. I got dressed while she got my next bag out and ready. She hooked me up, started the pump and started taking my vital signs. She told me my blood pressure wasn't low, but it was very "loud." My pulseox was fine, but my pulse was 135 reading from the pulse oximeter Wow. That machine is finicky sometimes, so she checked it manually and still got 110. High, but I had just been moving around and getting dressed. Then, she took my temperature. She asked me if I felt sick. No, why? My temp was over 100. Because I have a central line, a fever is a huge red flag for infection.
I had my nurse call the on-call GI covering for my motility specialist. She wanted to call my primary doctor. I knew it'd be best to let my GI handle it since I have the PICC for TPN. While we waited for the on-call to call back, I put shoes on and began gathering my supplies to sustain me through an admission if it came to that. The on-call called back and after hearing my vitals said I needed to go to the ER. I got my stuff together and headed out to the metro.
About 45 minutes later, I made it to Big Academic Medical Center. I headed to the ER and checked in. Every time someone took my pulse, they had to check two to three times to be sure it was right The first time I saw what it was, I wasn't all that surprised. It was reading 145, but I was feeling every one of those beats. I was brought back to an exam room fairly quickly.
When they hooked up the monitor, my heart rate ran between 150-160 beats per minute and my temp was hovering around 100. I was sitting still, not running a marathon as my heart rate seemed to indicate.The doc ordered a chest film and blood cultures. The x-ray to rule other sources of infection like pneumonia and the cultures were to check for an infection of my PICC line or in my bloodstream. They drew blood from my line and collected it in a jar that would be allowed to grow after being exposed to air. They drew blood from my other arm as well and collected that sample in a jar that would grow without the help of air. They also wanted a urine sample they could culture to rule out a bladder infection. Thanks to the fever and despite having TPN running, it took nearly three liters of fluid for me to deliver that.
My brother had met me in the ER and was a huge help. He distracted me and turned off my heart monitor every five minutes when it alarmed because my heart rate was so high. The rate began to come down as I was better hydrated, but stayed above 100 for the next two days. My fever trended down too, but was still high enough to be a concern.
Around 10:30, I was seen by the ER Attending. He asked some questions from behind a computer monitor. He decided I should be admitted in light of my fever and tachycardia. I called my dad to let him know I was staying, texted my mom, and then waited to go upstairs. My brother hung in there until midnight, but had to leave at that point. I hung out in my chair for another couple of hours but was transferred to the gurney at 1:30. I busied myself by eavesdropping on the goings-on in the ER. The stories I heard ranged from a woman seeking drug rehab, to a barely-drunk but very angry 19-year old college kid who was apparently there against his will thanks to a contract between the hospital and the university on whose campus the hospital lives.
Around 2 AM an internal medicine doc came down and saw me. She said she wanted them to stop my TPN in case that was a source of the infection. Apparently fungus likes to grow in TPN. Who knew? She said I would be given a peripheral IV in my right arm so that they could stop using my PICC.
The ER nurse had started me on two broad-spectrum antibiotics, Zosyn and Vancomycin which I was on for the duration of the admission at twice daily dosing. She also started an IV in my right hand that ranks near the top of my Most Brutal IV Experiences list. She found a good vein quickly. When that vein rolled, as my tiny red-head veins are wont to do, she FOLLOWED it. This fishing expedition meant an extremely awkward and painful placement into the boniest part of my hand. The bruise that line left is only now starting to fade.
Around 5 AM after nearly 9 hours in the ER, I was finally brought up to the fifth floor where I would spend the next six days.
Stay tuned to find out what grew!
Remember how I said work was really important to me? Well, I lost that job. A combination of the sequester and my needing to be homebound to get help with TPN led to my being let go. That happened at the end of March.
I spent the last week and a half of March job searching, filing for unemployment, and figuring out how to get my Social Security reinstated. I struggled emotionally to understand how I could be in the position of having to find a job again. It was hard enough interviewing when all I had to contend with were people's attitudes toward my using a chair. Now, I am going to present a whole new set of challenges at some point in the process thanks to GP. Talk about stressful. So things were in major flux.
Then April 3 happened.
I had felt exceptionally tired all day. I didn't think much of it since I'm often really tired. I also had some body pain that was new but I figured was explained by a lowish potassium found on my weekly labs drawn just two days before. As five o'clock neared, I actually took a nap at my desk waiting for my nurse to come. Weird. When the nurse came she unhooked me and I took a shower. I noticed I was weaker and had a harder time transfering than I do normally. Again I chalked it up to being tired. I got dressed while she got my next bag out and ready. She hooked me up, started the pump and started taking my vital signs. She told me my blood pressure wasn't low, but it was very "loud." My pulseox was fine, but my pulse was 135 reading from the pulse oximeter Wow. That machine is finicky sometimes, so she checked it manually and still got 110. High, but I had just been moving around and getting dressed. Then, she took my temperature. She asked me if I felt sick. No, why? My temp was over 100. Because I have a central line, a fever is a huge red flag for infection.
I had my nurse call the on-call GI covering for my motility specialist. She wanted to call my primary doctor. I knew it'd be best to let my GI handle it since I have the PICC for TPN. While we waited for the on-call to call back, I put shoes on and began gathering my supplies to sustain me through an admission if it came to that. The on-call called back and after hearing my vitals said I needed to go to the ER. I got my stuff together and headed out to the metro.
About 45 minutes later, I made it to Big Academic Medical Center. I headed to the ER and checked in. Every time someone took my pulse, they had to check two to three times to be sure it was right The first time I saw what it was, I wasn't all that surprised. It was reading 145, but I was feeling every one of those beats. I was brought back to an exam room fairly quickly.
When they hooked up the monitor, my heart rate ran between 150-160 beats per minute and my temp was hovering around 100. I was sitting still, not running a marathon as my heart rate seemed to indicate.The doc ordered a chest film and blood cultures. The x-ray to rule other sources of infection like pneumonia and the cultures were to check for an infection of my PICC line or in my bloodstream. They drew blood from my line and collected it in a jar that would be allowed to grow after being exposed to air. They drew blood from my other arm as well and collected that sample in a jar that would grow without the help of air. They also wanted a urine sample they could culture to rule out a bladder infection. Thanks to the fever and despite having TPN running, it took nearly three liters of fluid for me to deliver that.
My brother had met me in the ER and was a huge help. He distracted me and turned off my heart monitor every five minutes when it alarmed because my heart rate was so high. The rate began to come down as I was better hydrated, but stayed above 100 for the next two days. My fever trended down too, but was still high enough to be a concern.
Around 10:30, I was seen by the ER Attending. He asked some questions from behind a computer monitor. He decided I should be admitted in light of my fever and tachycardia. I called my dad to let him know I was staying, texted my mom, and then waited to go upstairs. My brother hung in there until midnight, but had to leave at that point. I hung out in my chair for another couple of hours but was transferred to the gurney at 1:30. I busied myself by eavesdropping on the goings-on in the ER. The stories I heard ranged from a woman seeking drug rehab, to a barely-drunk but very angry 19-year old college kid who was apparently there against his will thanks to a contract between the hospital and the university on whose campus the hospital lives.
Around 2 AM an internal medicine doc came down and saw me. She said she wanted them to stop my TPN in case that was a source of the infection. Apparently fungus likes to grow in TPN. Who knew? She said I would be given a peripheral IV in my right arm so that they could stop using my PICC.
The ER nurse had started me on two broad-spectrum antibiotics, Zosyn and Vancomycin which I was on for the duration of the admission at twice daily dosing. She also started an IV in my right hand that ranks near the top of my Most Brutal IV Experiences list. She found a good vein quickly. When that vein rolled, as my tiny red-head veins are wont to do, she FOLLOWED it. This fishing expedition meant an extremely awkward and painful placement into the boniest part of my hand. The bruise that line left is only now starting to fade.
Around 5 AM after nearly 9 hours in the ER, I was finally brought up to the fifth floor where I would spend the next six days.
Stay tuned to find out what grew!
Sunday, March 31, 2013
Books Six and Seven: "A Discovery of Witches" and "Shadow of Night"
This is a double-book post for a good reason. Deborah Harkness' A Discovery of Witches and Shadow of Night are two-thirds of a trilogy whose final part hasn't yet been released. They are fantastic.
In A Discovery of Witches we meet Diana Bishop. She is an historian of alchemy doing research at Oxford. We soon learn that Diana is a member of a family of witches and that she is a reluctant witch. She uses her magic to fix a clogged sink or to repair a broken washing machine periodically, but refuses to let her magic influence her work as a scholar. One day, she fills out a call slip for a manuscript that is unlike anything she's ever seen and is unwittingly thrown into an adventure that spans continents and millenium.
On the day Diana discovers the strange manuscript, she is being watched by the other player in this story. Matthew Clairmont is an Oxford scientist studying DNA. He and Diana meet and quickly fall in love. Like Diana, there is more to Matthew than meets the eye. He is a centuries-old vampire. The facts of Diana's lineage and Matthew's status as a vampire mean their love is forbidden by the terms of an ancient agreement struck between the three non-human races/ As their love deepens, things start to happen.
The story continues in Shadow of Night. After discovering that she can travel through time, Diana brings Matthew back to sixteenth-century England to try to find someone who can help her understand her growing magical talent. When they get there, Diana discovers that Matthew is harboring many secrets.
Part Harry Potter, part The Historian, these books are a fun escape. I am very excited to see how the story ends.
Part Harry Potter, part The Historian, these books are a fun escape. I am very excited to see how the story ends.
Wednesday, March 27, 2013
Escape Fire: The Fight to Rescue American Healthcare
Last weekend I watched the feature-length documentary, Escape Fire:The Fight to Rescue American Healthcare. It was enlightening. It talked about what was broken in America's healthcare system. The thesis of the film seemed to be that while systems are in fact to blame for the dire strain our healthcare system is under, it is us, the people of this country who bear the brunt of the responsibility.
How did I come to that conclusion? Because the film spent the majority of it's two hours enumerating the high costs and consequences of obesity related illnesses. All of the experts interviewed said that our systems need to devote more resources to helping people prevent costly illnesses like diabetes, strokes and heart attacks. They were emphatic that we don't have a "health care" system, rather we have a "disease care" system that is reactive rather than proactive. One example of this was a woman who had uncontrolled diabetes and high blood-pressure. These unchecked conditions led her to undergo TWENTY-SEVEN different cardiac procedures that included stenting and open-heart bypasses. Twenty-seven. Unbelievable. Once she was seen by the Cleveland Clinic her chronic conditions were addressed. She required another bypass even after that.
I don't dispute that obesity is epidemic in this country. Two-thirds of us are over-weight or obese. Fast food is everywhere, even in schools. I also can't deny that the illnesses that result from obesity must be a drain on our healthcare system.
You may have sensed there's a but coming. There is.
BUT, there are a slew of chronic illnesses and conditions that are not triggered by lifestyle choice and which cannot be reversed once they manifest. Gastroparesis is one of them. More resources should be spent increasing awareness among the medical community of the impact of these poorly understood conditions. The chronically ill deserve compassion and appropriate care. Too often we get brushed off, told it's in our heads when we have a defined illness.
So yes, doctors need to be able to spend more time with patients Yes Medicare needs reform. Finally, yes society needs to address the forces behind our obesity problem. Don't forget the rest of us, though.
How did I come to that conclusion? Because the film spent the majority of it's two hours enumerating the high costs and consequences of obesity related illnesses. All of the experts interviewed said that our systems need to devote more resources to helping people prevent costly illnesses like diabetes, strokes and heart attacks. They were emphatic that we don't have a "health care" system, rather we have a "disease care" system that is reactive rather than proactive. One example of this was a woman who had uncontrolled diabetes and high blood-pressure. These unchecked conditions led her to undergo TWENTY-SEVEN different cardiac procedures that included stenting and open-heart bypasses. Twenty-seven. Unbelievable. Once she was seen by the Cleveland Clinic her chronic conditions were addressed. She required another bypass even after that.
I don't dispute that obesity is epidemic in this country. Two-thirds of us are over-weight or obese. Fast food is everywhere, even in schools. I also can't deny that the illnesses that result from obesity must be a drain on our healthcare system.
You may have sensed there's a but coming. There is.
BUT, there are a slew of chronic illnesses and conditions that are not triggered by lifestyle choice and which cannot be reversed once they manifest. Gastroparesis is one of them. More resources should be spent increasing awareness among the medical community of the impact of these poorly understood conditions. The chronically ill deserve compassion and appropriate care. Too often we get brushed off, told it's in our heads when we have a defined illness.
So yes, doctors need to be able to spend more time with patients Yes Medicare needs reform. Finally, yes society needs to address the forces behind our obesity problem. Don't forget the rest of us, though.
Monday, March 11, 2013
The Chronic Illness Clock: A Treatise on Waiting
In the last two years, my conception of time has changed dramatically.Before GP, my day was governed by mealtimes, commute schedules, TV shows and sports events. Now, my life revolves around med schedules, nursing schedules and when I need to take TPN out of the refrigerator.I don't need a clock to tell me when four hours has passed. My escalating nausea level does that for me. I don't need to know when typical mealtimes are, I no longer feel hunger. On the rare occasion that I do, the urge doesn't last more than about five minutes leaving me little time to actually act on it.
Other than the practical day-to day realities of time when living with chronic illness, time plays a huge role in my life with both illness and disability. At the beginning of my journey with gastroparesis, I kept waiting for this horrendous "stomach thing" to go away. That's why I didn't dash right to the doctor. No one thinks that a symptom like nausea will become chronic and will effectively ruin your life, Once I realized I needed help, time seemed to crawl. I was always waiting. Waiting to see that first clueless GI. Waiting for the things he told me to do to help me. Waiting to see the second GI. Waiting for the testing to be done and then the results to come back.
Even after my diagnosis, I was still perpetually waiting. Waiting to see the Motility Specialist. Waiting for the testing the surgeon needed to be done and results to come back. Waiting for surgery dates. Waiting to recover. Waiting to see if I had any improvement from a surgery. I'm still there when it comes to the stimulator. I ask myself daily WHEN will it start working? When will I be able to ditch TPN? If anyone could tell me that, it would make the huge changes I've been forced to make to accommodate the need for TPN worth it. All of this waiting has got to be worth something, If not, I'll feel like all of this has been a waste of time.
I'm tired of waiting.Get with the program body.
Other than the practical day-to day realities of time when living with chronic illness, time plays a huge role in my life with both illness and disability. At the beginning of my journey with gastroparesis, I kept waiting for this horrendous "stomach thing" to go away. That's why I didn't dash right to the doctor. No one thinks that a symptom like nausea will become chronic and will effectively ruin your life, Once I realized I needed help, time seemed to crawl. I was always waiting. Waiting to see that first clueless GI. Waiting for the things he told me to do to help me. Waiting to see the second GI. Waiting for the testing to be done and then the results to come back.
Even after my diagnosis, I was still perpetually waiting. Waiting to see the Motility Specialist. Waiting for the testing the surgeon needed to be done and results to come back. Waiting for surgery dates. Waiting to recover. Waiting to see if I had any improvement from a surgery. I'm still there when it comes to the stimulator. I ask myself daily WHEN will it start working? When will I be able to ditch TPN? If anyone could tell me that, it would make the huge changes I've been forced to make to accommodate the need for TPN worth it. All of this waiting has got to be worth something, If not, I'll feel like all of this has been a waste of time.
I'm tired of waiting.Get with the program body.
Sunday, February 17, 2013
On Inclusion Part One:The Early Years
Today I finally watched Including Samuel. The documentary tells the story of one family's journey to educate and integrate their son Samuel, who has cerebral palsy. I've wanted to watch the film for a long time. The family is from New Hampshire, my home state. I also consider myself an inclusion success story.
I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten I spent a lot of time working to improve my fine motor skills.
I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.
Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.
There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.
There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!
I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten I spent a lot of time working to improve my fine motor skills.
I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.
Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.
There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.
There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!
Book Five: Room
Imagine being five years old and never going outside. Imagine that all you know of the world comes from a television set. That is Jack's reality in Room. His mother had been kidnapped two years before his birth and imprisoned in a sound proof garden shed. Jack grows up in the shed and is comfortable there. Until the day his mother decides to show him more of the world. This is the story of what happens after a daring escape. I can't say too much without giving it away. Trust me, just read this book.
Wednesday, February 13, 2013
Book Four: The Spiirit Catches You and You Fall Down
This next book was fascinating. Part medical case history, part sociology text with a smattering of anthropology thrown in for good measure. The Spirit Catches You and You Fall Down chronicles one family's journey through America's broken healthcare, immigration and social service systems.
In Western medical parlance, 18-month old Lia Lee has severe epilepsy. Her seizures are often so severe as to require her to need ventilatory support and she often contracts aspiration pneumonia when she inhales stomach contents into her lungs. Her pediatricians in Merced California prescribe the standard anti-seizure medications. Lia continues to have several grand mal seizures a month. It is determined that the little girl's parent's are not giving the proper dose of medication, Lia is removed from their care and made a ward of the State for almost a year. She is returned to her parents. Then a catastrophe strikes.
To Lia's Hmong parents, it's clear that one of their precious daughter's souls has gone missing. They do not speak English and have limited understanding of the doctor's direction as to how they should treat her seizures. They look on her epilepsy as a gift. In their culture, people with epilepsy are often marked as shaman as their seizures bring them closer to the Gods.
This is the story of what happens when two cultures clash in huge ways. It raises questions of cultural sensitivity in medicine, what it means to be a good doctor, a good parent, even shedding new light on the definition of disability. Simply incredible.
In Western medical parlance, 18-month old Lia Lee has severe epilepsy. Her seizures are often so severe as to require her to need ventilatory support and she often contracts aspiration pneumonia when she inhales stomach contents into her lungs. Her pediatricians in Merced California prescribe the standard anti-seizure medications. Lia continues to have several grand mal seizures a month. It is determined that the little girl's parent's are not giving the proper dose of medication, Lia is removed from their care and made a ward of the State for almost a year. She is returned to her parents. Then a catastrophe strikes.
To Lia's Hmong parents, it's clear that one of their precious daughter's souls has gone missing. They do not speak English and have limited understanding of the doctor's direction as to how they should treat her seizures. They look on her epilepsy as a gift. In their culture, people with epilepsy are often marked as shaman as their seizures bring them closer to the Gods.
This is the story of what happens when two cultures clash in huge ways. It raises questions of cultural sensitivity in medicine, what it means to be a good doctor, a good parent, even shedding new light on the definition of disability. Simply incredible.
Sunday, February 10, 2013
Why?
I am not religious in the slightest. Wasn't raised to believe anything in particular. As I have aged, I've started to believe that *maybe* there's a higher power. I just can't bear to think there isn't some reason for all that has gone wrong in my life. I am at a low point right now. The way things are going is just SO unfair. Why did I have to be diagnosed with gastroparesis? Why was median arcuate ligament syndrome not the reason behind it all? Why didn't I respond to the stimulator like I expected? Why did my only option have to be TPN?
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving up would be tantamount to suicide This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.
People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.
Thursday, February 7, 2013
Coughlympics Redux, Or Fuck you GP
It''s 2 AM here. Instead of sleeping, I am writing. My back, chest and stomach all decided to have a bit of fun tonight. It hurts to breathe, hurts to move. It's all GP's fault.
If you can remember back to my catch up posts from last summer, you might remember that I spent a chunk of April coughing my lungs out. Then I spent a week in the hospital trying to figure out why but no answers were found. When I got home, the cough came too. It hung out until the end of September, after I had the stimulator put in. It had gotten dramatically better. Until about two weeks ago.
It's back. Just as obnoxious. Just as seemingly unsolvable. I am on a long steroid taper because first we thought it was my asthma, then when I didn't respond, we lengthened the time frame to ensure adequate absorption by my broken stomach. When I still didn't respond we started a moderate-strength antibiotic. No dice.
So today, I went and had a chest x ray taken and then schlepped to see Dr, Lungs. Good news is I don't have any infection. Bad news is we have really no earthly clue what is wrong. Our best guess is bronchospasm triggered by reflux. My reflux is 100% gastroparesis caused. See? It's all GP's fault. So, for now I've been put on liquid morphine to try to turn my unbelievably touchy cough receptors off. He also mentioned admitting me several times. Not sure what the point would be, if we can't fix it. If I can't tolerate the morphine, or don't sleep well soon, I might be forced in that direction. I'm so tired. This is not a life. This is a miserable existence. I don't want to do it anymore.
Fuck you gastroparesis!
If you can remember back to my catch up posts from last summer, you might remember that I spent a chunk of April coughing my lungs out. Then I spent a week in the hospital trying to figure out why but no answers were found. When I got home, the cough came too. It hung out until the end of September, after I had the stimulator put in. It had gotten dramatically better. Until about two weeks ago.
It's back. Just as obnoxious. Just as seemingly unsolvable. I am on a long steroid taper because first we thought it was my asthma, then when I didn't respond, we lengthened the time frame to ensure adequate absorption by my broken stomach. When I still didn't respond we started a moderate-strength antibiotic. No dice.
So today, I went and had a chest x ray taken and then schlepped to see Dr, Lungs. Good news is I don't have any infection. Bad news is we have really no earthly clue what is wrong. Our best guess is bronchospasm triggered by reflux. My reflux is 100% gastroparesis caused. See? It's all GP's fault. So, for now I've been put on liquid morphine to try to turn my unbelievably touchy cough receptors off. He also mentioned admitting me several times. Not sure what the point would be, if we can't fix it. If I can't tolerate the morphine, or don't sleep well soon, I might be forced in that direction. I'm so tired. This is not a life. This is a miserable existence. I don't want to do it anymore.
Fuck you gastroparesis!
Tuesday, February 5, 2013
And She's Down!
So today was interesting. At around 3:00 this morning, I got up to go the bathroom. Thanks TPN. Routine over, I ventured back to my bedroom to pull my shorts up. I stood up, got my shorts up, then promptly lost my balance. I was able to control my descent, but I wound up on the floor. Well hell, what do I do now? I haven't fallen in a *very* long time, so was rather clueless as to what to do.
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.
I tried for a few minutes to get on my hands and knees My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,
They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.
Never a dull moment around here!
Monday, February 4, 2013
Book Three: Schuyler's Monster: A Father's Journey with His Wordless Daughter
I've always been interested in memoirs of the disability experience. From the time I was small, I have always felt a connection to the people who tell these stories. I know they get it. I'm more drawn to autobiographies of people living with a disabilities for obvious reasons. My next book broke that trend in a big way.
Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor delays signing wasn't going to be a good long term communication tool. Always resourceful, her parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.
Hooray for hard-working tenacious parents!
Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor delays signing wasn't going to be a good long term communication tool. Always resourceful, her parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.
Hooray for hard-working tenacious parents!
Sunday, February 3, 2013
29 Things About GP
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career: My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know: That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was: I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.
Saturday, February 2, 2013
Book Two: Fed Up with Lunch
For the last year and a half, I have become very interested in food. My favorite shows and channels and shows are food-centric ones. At first I watched these shows dreaming of the day I could rejoin the eating world. Now that eating is no longer fun and I'd much rather do anything other than that, I watch these shows to satiate what seems to be a kind of psychological hunger. My brain wants me to feel hunger and is demanding I eat. Instead of listening to that ever insistent little voice, I watch food on TV.
As the flip side to the obsession I've developed for good food, I've also become very interested in how food can go wrong. I've watched a lot of documentaries lately about the obesity problem. I'm also growing more and more interested in the politics of food. How everybody from the food manufacturers to grocery stores and marketing firms are either making us fat or are trying to stop us from eating ourselves to death. This interest is a lot more useful to me now than it was in the beginning. It helps me to validate that at least for now, it's alright not to want to eat. Food is bad for everyone in some way.
My second book of the year fed right into my "bad food" interest. Fed up with Lunch is the story of a school speech pathologist who decided to eat lunch with her students every school day for a year and then blog about the experience. What she found was very surprising. The food served at her school was far from the healthy fare you'd expect to be fed to kids trying to learn. Most of the food was processed to within an inch of it's life and served in slimy plastic packaging. Most of her students didn't have enough time to eat the entire meals because lunch lasted just 20 minutes. She explained that frozen fruit packed in sweet syrup counts as a fruit under the USDA's school lunch nutrition standards. She also explored how theco lack of good food in schools is compounded by the slow disappearance of physical activity built into the school day. Many schools have either done away with completely or drastically reduced gym classes and recess to accommodate shrinking budgets and shortened school hours.
The moral of the story? Pack your kids a good healthy lunch if you can. Most school food is bad food.
My second book of the year fed right into my "bad food" interest. Fed up with Lunch is the story of a school speech pathologist who decided to eat lunch with her students every school day for a year and then blog about the experience. What she found was very surprising. The food served at her school was far from the healthy fare you'd expect to be fed to kids trying to learn. Most of the food was processed to within an inch of it's life and served in slimy plastic packaging. Most of her students didn't have enough time to eat the entire meals because lunch lasted just 20 minutes. She explained that frozen fruit packed in sweet syrup counts as a fruit under the USDA's school lunch nutrition standards. She also explored how theco lack of good food in schools is compounded by the slow disappearance of physical activity built into the school day. Many schools have either done away with completely or drastically reduced gym classes and recess to accommodate shrinking budgets and shortened school hours.
The moral of the story? Pack your kids a good healthy lunch if you can. Most school food is bad food.
Wednesday, January 16, 2013
The Thrill of Accomplishment
Most days I'm ambivalent about having CP. It makes life hard, but I've nerver known any different. Besides, everyone has a hard life in one way or another. I don't have the market corned on hardship by any means.
Today I am grateful for CP. It gives me the chance to be immensley proud of myself multiple times a week. I get to feel the thrill of accomplishment when I manage to do something I either thought was impossible or that I had thought too hard to keep trying. The moments of pure joy are found in unlikely places. The come from doing things most would consider mundane. When I successfully fish my glasses out from behind my bed, I have a small party. When I finally master making peanut butter and jelly with one hand, there is a victory parade. When I am able to make my bed, including the bottom sheet, I shout it from the rooftops. I don't care that it took an hour and three brooms to extricate my glasses, or that there's peanut all over my kitchen and myself. The point is I did it by myself.
Today I got to experience this feeling three times in the space of an hour. All I did was take a shower. This was my first independant shower using a cool new bath chair that my mad-inventor dad built. It uses an air compressor and a piston to magically get my legs over the edge of my bathtub and an air bag to raise the seat up high enough. It is awesome. I've been crunched for time to actually use it between working full time and being tethered to TPN for 18 hours a day. Today, I had some free time at lunch and have been craving a real shower. I went for it. It was glorious. I transfered to the seat, pushed myself back, clicked my seatbelt and flipped the switch that slowly drew me over the middle of the tub.I flipped the second switch that slowly inflated the airbag under the seat so that when I used my body to turn the seat, my feet would clear the edge of the tub. Then I donned the plastic sleeve that protects my PICC line site, and went to town. When I was done, I reversed the process, feeling as though I had stuck the landing in an Olympic vault as my feet lightly brushed the floor.
So thank you, broken brain for making me feel like a little kid again.
Today I am grateful for CP. It gives me the chance to be immensley proud of myself multiple times a week. I get to feel the thrill of accomplishment when I manage to do something I either thought was impossible or that I had thought too hard to keep trying. The moments of pure joy are found in unlikely places. The come from doing things most would consider mundane. When I successfully fish my glasses out from behind my bed, I have a small party. When I finally master making peanut butter and jelly with one hand, there is a victory parade. When I am able to make my bed, including the bottom sheet, I shout it from the rooftops. I don't care that it took an hour and three brooms to extricate my glasses, or that there's peanut all over my kitchen and myself. The point is I did it by myself.
Today I got to experience this feeling three times in the space of an hour. All I did was take a shower. This was my first independant shower using a cool new bath chair that my mad-inventor dad built. It uses an air compressor and a piston to magically get my legs over the edge of my bathtub and an air bag to raise the seat up high enough. It is awesome. I've been crunched for time to actually use it between working full time and being tethered to TPN for 18 hours a day. Today, I had some free time at lunch and have been craving a real shower. I went for it. It was glorious. I transfered to the seat, pushed myself back, clicked my seatbelt and flipped the switch that slowly drew me over the middle of the tub.I flipped the second switch that slowly inflated the airbag under the seat so that when I used my body to turn the seat, my feet would clear the edge of the tub. Then I donned the plastic sleeve that protects my PICC line site, and went to town. When I was done, I reversed the process, feeling as though I had stuck the landing in an Olympic vault as my feet lightly brushed the floor.
So thank you, broken brain for making me feel like a little kid again.
Sunday, January 13, 2013
Life as a Robot: Early Impressions of Life on TPN and Other Things
So, a lot happened for me in medical land the last couple weeks. I had a PICC line placed, a stimulator check and started Total Parentral Nutrition all in the last week and a half.Crazyiness. As a result I have become home bound in order for my insurance to cover the nursing care I need to make it all work.
PICC Line Placement
A PICC line is a type of central IV. It is placed in the upper arm using ultrasound guidance. The catheter is snaked up and over into a large vien near the heart. The most painful part of the placement was when the nurse injected Lidocaine to numb my arm. It took about half an hour. I have what's called a double lumen power PICC. This just means that my line can handle a fastish infusion rate and has two endpoints. One is used to infuse my TPN every day. The other is used for blood draws. The things I wish I'd known before I got my line are that you need to protect the line when you shower, and long sleeved shirts should be banished from your wardrobe while you have line. The showering thing proved tricky for a while until I found a cast cover I can do myself. The t-shirt thing took me all of two minutes to discover after wearing a long sleeved shirt the day I had it placed. The longer the sleeve, the more it catches on stuff.
Stimulator Check
The afternoon of my line placement, I also saw Dr. B. to check my stimulator. Since Dr. B. works at an academic medical center, there seems to always be a new medical student for me to teach. This time, oh man. I always refer to my stimulator as a pacer when explainiung it to new people. It's just easier to understand than calling it a stimulator. So, I explained it that way to the med student. I even let him feel where my generator is. He was surprised to learn that I have been nauseous daily since October. I know you're new to the story man, but read my chart. Dr. B. was outside my exam room and the med student presented me to him. Every time the student told him I was there to check on the pacer, he very sternly corrected him. "Stimulator!" It was quite amusing. Dr. B. came in to "interrogate the generator" his words for using a programmer to check the stimulator's settings and battery life. Everything looks good. He did finally explain why he has yet to turn up the settings. My nutrition status is so poor that the device has no chance of working right now. I need to get to a better place in that regard before we can hope to get the device to work at all.
We also talked about my MALS repair. It's been six months since that surgery. Hard to believe. Anyway, when I go in to get my stimulator checked in April, I'll have another ultrasound of the celiac artery just before. He doesn't think any possible compression is causing my current decline. If the artery is compressed again, I may have an aniogram. to try to clear it. Related to the study I'm part of, he gave me the six-month post-op questionaire. The whole first page listed various phyiscal activities and asked me to rate how much my health has affected my ability to do them. Those were all things I've never been able to do. The next two asked about my emotional and social life . These were more applicable to me. The very last question was very funny. It read "My health is excellent", and asked me to agree or not. I did not.
Starting TPN
Four days after I got my line, my infusion pharmacy called and said that my TPN orders had come in and I'd be starting that day! I could look forward to feeling better and to having energy. Wednesday night, my home health nurse came and hooked me up. The solution is a nutritionally complete mixture of protein carbohydrates and fats. I get 50-ish MLs an hour hour over 18 hours. Three days a week I get some multivitamins mixed in,and take oral vitamins on the off days. Eighteen hours is a long time to move around while attached to a line and pump. I have found good ways to do things already. Aside from needing my formula changed so that I got enough dextrose, and the last couple of days of awful nausea and fatigue, I've done pretty well. Who knows what I'll see in the next several weeks.
PICC Line Placement
A PICC line is a type of central IV. It is placed in the upper arm using ultrasound guidance. The catheter is snaked up and over into a large vien near the heart. The most painful part of the placement was when the nurse injected Lidocaine to numb my arm. It took about half an hour. I have what's called a double lumen power PICC. This just means that my line can handle a fastish infusion rate and has two endpoints. One is used to infuse my TPN every day. The other is used for blood draws. The things I wish I'd known before I got my line are that you need to protect the line when you shower, and long sleeved shirts should be banished from your wardrobe while you have line. The showering thing proved tricky for a while until I found a cast cover I can do myself. The t-shirt thing took me all of two minutes to discover after wearing a long sleeved shirt the day I had it placed. The longer the sleeve, the more it catches on stuff.
Stimulator Check
The afternoon of my line placement, I also saw Dr. B. to check my stimulator. Since Dr. B. works at an academic medical center, there seems to always be a new medical student for me to teach. This time, oh man. I always refer to my stimulator as a pacer when explainiung it to new people. It's just easier to understand than calling it a stimulator. So, I explained it that way to the med student. I even let him feel where my generator is. He was surprised to learn that I have been nauseous daily since October. I know you're new to the story man, but read my chart. Dr. B. was outside my exam room and the med student presented me to him. Every time the student told him I was there to check on the pacer, he very sternly corrected him. "Stimulator!" It was quite amusing. Dr. B. came in to "interrogate the generator" his words for using a programmer to check the stimulator's settings and battery life. Everything looks good. He did finally explain why he has yet to turn up the settings. My nutrition status is so poor that the device has no chance of working right now. I need to get to a better place in that regard before we can hope to get the device to work at all.
We also talked about my MALS repair. It's been six months since that surgery. Hard to believe. Anyway, when I go in to get my stimulator checked in April, I'll have another ultrasound of the celiac artery just before. He doesn't think any possible compression is causing my current decline. If the artery is compressed again, I may have an aniogram. to try to clear it. Related to the study I'm part of, he gave me the six-month post-op questionaire. The whole first page listed various phyiscal activities and asked me to rate how much my health has affected my ability to do them. Those were all things I've never been able to do. The next two asked about my emotional and social life . These were more applicable to me. The very last question was very funny. It read "My health is excellent", and asked me to agree or not. I did not.
Starting TPN
Four days after I got my line, my infusion pharmacy called and said that my TPN orders had come in and I'd be starting that day! I could look forward to feeling better and to having energy. Wednesday night, my home health nurse came and hooked me up. The solution is a nutritionally complete mixture of protein carbohydrates and fats. I get 50-ish MLs an hour hour over 18 hours. Three days a week I get some multivitamins mixed in,and take oral vitamins on the off days. Eighteen hours is a long time to move around while attached to a line and pump. I have found good ways to do things already. Aside from needing my formula changed so that I got enough dextrose, and the last couple of days of awful nausea and fatigue, I've done pretty well. Who knows what I'll see in the next several weeks.
Tuesday, January 1, 2013
2013 Book One: Unaccountable:What Hospitals Won't Tell You and How Transparency Can Revolutionize Healthcare
I want to get back into the habit of tracking what I read this year. Here's my first review of the year. As a newly minted professional patient I have become interested in healthcare policy and the way doctors think. Unaccountable was a very interesting look at the ways hospitals and doctors hide behind their professions and lack the same kinds of accountability measures seen in other businesses. As much as some deny it, medicine is a business. Paitents are the customer. This book explores some key issues in medicine's lack of transparency and offers concrete suggestions of how to rectify them.
Issues discussed include: medical mistakes, impaired or otherwise dangerous phyiscians,over-treatment and over-reliance on unproven technologies.
Thew bottom line is this is an important book for anyone interested in finding out how healthcare could be better.
Issues discussed include: medical mistakes, impaired or otherwise dangerous phyiscians,over-treatment and over-reliance on unproven technologies.
Thew bottom line is this is an important book for anyone interested in finding out how healthcare could be better.
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