As I sit on the threshold of a new year, I am doing what many are doing tonight. I'm looking back on the year nearly over. I am marveling at the struggles 2012 brought for me, medically, professionally, and personally. With all this reflection I'm left wondering how the hell am I still standing? How did I not crumble? The answer is astonishingly simple. I was unwilling to make a choice that was anything but getting on with it.
Lest you have forgotten what I fought through in 2012 here it is again.
I was admitted to the hospital three times this year. I spent a total of 12 days in the hospital. I had two major surgeries this year, separated by just three months. Collectively, these procedures meant I lost a month worth of work time.
I had another gastric emptying study, an MRI, a head CT, a chest X-Ray, a Ph-probe study, a swallow study, an endoscopy, an MRA, and two doppler ultrasounds. I wore a Foley catheter for six days. I had testing of my bladder function. I now take nine different medications a day and two more as needed.Yes, I remembered all of that on my own, though I do have it written down for when I see a new doctor.
Speaking of doctors, my team grew by three this year. I now see: a primary doctor, two gastroenterologists (a general GI and one who specializes in gastroparesis and nutrition support.) a pulmonologist and a uroligist.
Yet despite all of that, I have excelled at my job I'm doing so well that I got a performance award during my year-end review in November. I have the best work family I could ask for. I am valued for what I bring to my job, and am missed when I can't be there.
So, while this year may well have been the hardest of my life, I made it through. 2013 is shaping up to start off just as roughly as I will be starting Total Parentral Nutrition (IV nutrition) in the coming days or weeks. I will make it through that too. As I tell everyone who stands in awe of my strength or courage or bravery, there is simply no other good choice. Just do it!
Monday, December 31, 2012
Wednesday, December 19, 2012
On Sandy Hook.
On Friday, tragedy was visited on the U.S. once again. A young man broke into a school in Connecticut. He walked into a classroom of Kindergarteners and opened fire. He left 20 children and six adults dead in his wake before taking his own life.
The thing that breaks my heart the most about this incident is how close to the holidays it is. Five and six-year olds are the one who believe most reverently in Santa, Rudolph and the magic of Christmas . One desperately ill man's act of violence has effectively ruined Christmastime for twenty-six families from now on. Instead of counting down the days until Santa comes, families are planning funerals. For what purpose? What message could you possibly send through an act like that? Just senseless.
I know I'm kind of late in posting something, but I have only just begun to process what happened. I can only hope the families affected can find some measure of peace in these dark days, I hope that promises made in regards to the necessary policy changes will be made real. In the wake of this event everything from school safety, gun control and mental health service provision will come under scrutiny.
Something's got to give.
The thing that breaks my heart the most about this incident is how close to the holidays it is. Five and six-year olds are the one who believe most reverently in Santa, Rudolph and the magic of Christmas . One desperately ill man's act of violence has effectively ruined Christmastime for twenty-six families from now on. Instead of counting down the days until Santa comes, families are planning funerals. For what purpose? What message could you possibly send through an act like that? Just senseless.
I know I'm kind of late in posting something, but I have only just begun to process what happened. I can only hope the families affected can find some measure of peace in these dark days, I hope that promises made in regards to the necessary policy changes will be made real. In the wake of this event everything from school safety, gun control and mental health service provision will come under scrutiny.
Something's got to give.
Wednesday, November 21, 2012
Grateful Despite It All.
Well, it's Thanksgiving-eve here in the States. Thanksgiving was one of my favorite holidays growing up. We went to my grandparents every year, Thanksgiving was one thing that was cool after my parents' divorce. We got twice the turkey! What could be better than that.
My experience of Thanksgiving has changed over the last couple of years. Last year was the first year I wasn't going home for Thanksgiving. It was also my first Thanksgiving with gastroparesis, though I didn't know that for certain. I spent the day with a friend, ate, talked and laughed. Yes, the holiday is food centric, but I managed to find joy in the face of uncertainity. This year I will spend the day with that friewnd, eat, talk and laugh. Even though the uncertainity of awaiting diagnosis has been removed, parts of the road ahead are still obscured by the shadow of the unknown. That's OK though. I have so much to be grateful for.
I am grateful for recently renewed friendships. I make a habit of pushing people away, then being surprised when I find myself alone. I have been shown the value of having people in my corner and I value their friendship more than they will ever know.
I'm grateful to my work family. They support day-to-day so that I can still contribute. The friends there give me a safe place to fall apart when I need to. My supervisor couldn't be more understanding. I truly lucked out.
I am grateful to my awesome team of specialists, While sometimes it can feel like they're groping for answers right along with me, I know that by-and large, they really care and want to give me the highest quality of life possible.
I am grateful for my life. As hard as it is, as fraught with uncertanity as it is, I have a purpose. I don't quite believe that everything happens for a reason, but if anything has brought me closer to beliving that it is this last year and a half.
Yes, Thanksgiving is going to be different this year, but so am I. Just like last year, I will find joy amid the grief.
Happy Thanksgiving!
My experience of Thanksgiving has changed over the last couple of years. Last year was the first year I wasn't going home for Thanksgiving. It was also my first Thanksgiving with gastroparesis, though I didn't know that for certain. I spent the day with a friend, ate, talked and laughed. Yes, the holiday is food centric, but I managed to find joy in the face of uncertainity. This year I will spend the day with that friewnd, eat, talk and laugh. Even though the uncertainity of awaiting diagnosis has been removed, parts of the road ahead are still obscured by the shadow of the unknown. That's OK though. I have so much to be grateful for.
I am grateful for recently renewed friendships. I make a habit of pushing people away, then being surprised when I find myself alone. I have been shown the value of having people in my corner and I value their friendship more than they will ever know.
I'm grateful to my work family. They support day-to-day so that I can still contribute. The friends there give me a safe place to fall apart when I need to. My supervisor couldn't be more understanding. I truly lucked out.
I am grateful to my awesome team of specialists, While sometimes it can feel like they're groping for answers right along with me, I know that by-and large, they really care and want to give me the highest quality of life possible.
I am grateful for my life. As hard as it is, as fraught with uncertanity as it is, I have a purpose. I don't quite believe that everything happens for a reason, but if anything has brought me closer to beliving that it is this last year and a half.
Yes, Thanksgiving is going to be different this year, but so am I. Just like last year, I will find joy amid the grief.
Happy Thanksgiving!
Friday, November 2, 2012
In Which The Other Shoe Drops and I Have "The Talk
OK, remember how I said I was taking solace in the fact that supportive measures for nutrition have never come up? Yeah, that was nice while it lasted.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Sunday, October 28, 2012
In Which I Become a Cyborg Part Two: Surgery
I am ready to continue the story of my experience having a gastric nuerostimulator. placed. My mom and I took a cab to Big Academic Medical Center bright and early on the morning of September 24. We got there way ahead of my scheduled arrival time of 7:30, so stopped off in the cafeteria so Mom could grab a cofee. Then we made our way to the surgical waiting room where we installed ourselves in a corner to watch shows on her laptop until it was time to check in. Eventually I was called to register, then we waited a bit longer and were brought to pre-op with several other patients.Mom helped me change into a gown, we transferred me to a gurney, an IV was placed, then we just waited.
Once the IV was placed, Mom mentioned that she had seen on the cover of my chart that they were calling the procedure day surgery. She asked how I would feel about going home right afjter surgery. I was hesitant, but knew that I'd be in good hands with my mom. Soon, Dr. B. came by to look at my chart. While he flipped pages, I asked where he planned to place the external part of the stimulator.
The system has two parts, the generator which is placed right under the skin of the abdomen generally on the left side, since that's where the stomach lives. The second part is the leads that are implanted into the wall of the stomach. The device is used as a treatment for the nausea and vomiting associated with gastroparesis that doesn't respond well invasive therapies like medications. It works by sending counter signals to the nerves of the stomach that would otherwise tell my brain I was nauseated. For some, it's the best tool they've found to help manage symptoms.
Dr. B. told me that he'd place it on the left side. He also told me that he hoped I would be willing to complete a questionaire about my symptoms before and after the surgery for MALS. He is doing a study of who are really good candidates for surgical correction of that syndrome. There was pre-op questionare and a post-op questionarre. Since nothing really had improved from before the surgery, it was easy to fill them both out after the fact. As unique as I am, I've never been part of a study. I'm weirdly excited about that.
Soon after Dr. B.left, the most attractive anesthesiologist I have ever seen came in. Seriously, he was so handsome. Awesome eyes, a beard that fit his face perfectly. He was just very fun to look at. He was impressed by my knowledge of myself. He gave me the awful ant-reflux junk. I told him about my history with Scanner/ OR Tables of Death. That would turn out to be the most important thing I told him. I said goodbye to Mom and don't remember anything until the recovery room. He must have given me something really good. After about three hours, the surgery was over and I woke up in recovery.
The thing I remember most about recovery was the pain. It huirt a lot more than I thought it would, especially in the area where the generator was implanted. In retrospect, they created a pocket where pockets do not naturally exsist, it was bound to hurt. It was also where the largest incision was. I was so glad to have my old friend morphine to keep me company! Afteer only an hour ore so in recovery, I was moved to a room. I got to bring along some oxygen this time as my lungs were trying to go on strike and my saturations were dropping a little.
Once I was in a room, I began the Wait for Pee. I wasn't going to write about this part, but figured it would be good for others to know. General anesthesia paralyzes all the muscles, including the bladder. That's why you'll often have a foley catheter placed during surgery. I discovered in June that my bladder is particularly suseptible to freezing up after having a foley in and then taken out. I ended up being sent home with a foley in place in June because my bladder just wouldn't cooperate. Anyway, this time around I didn't have a foley because I was already at risk of infection because I was having something implanted. It was up to me to break through and go on my own. This proved difficult and involved literally hours of trying. I tried different positions, while drinking, even got out of bed to try on a commode. After hours of trying without success, I let the nurse take care of things for me just so they'd leave me alone. After that and my nightime meds, we sertled down for the night. It was a restless night. I had realized the morphine was making my nausea worse, so I wasn't using it and was in a lot of pain. Morning rounds found me in a lot of pain still but eager to go home for my birthday the next day. I convinced them to let me go. I was still in significant pain, but not as nauseated and was now peeing just fine.
Before I left, I had my mom get me a bagel from the cafeteria. I took a bite and almost cried for the joy of it. It was the first taste of food I'd had in over a year that actually tasted good. I ate about a quarter of it then was full. I was ecstatic. Maybe, just maybe this was the answer I'd been hoping for.
Once the IV was placed, Mom mentioned that she had seen on the cover of my chart that they were calling the procedure day surgery. She asked how I would feel about going home right afjter surgery. I was hesitant, but knew that I'd be in good hands with my mom. Soon, Dr. B. came by to look at my chart. While he flipped pages, I asked where he planned to place the external part of the stimulator.
The system has two parts, the generator which is placed right under the skin of the abdomen generally on the left side, since that's where the stomach lives. The second part is the leads that are implanted into the wall of the stomach. The device is used as a treatment for the nausea and vomiting associated with gastroparesis that doesn't respond well invasive therapies like medications. It works by sending counter signals to the nerves of the stomach that would otherwise tell my brain I was nauseated. For some, it's the best tool they've found to help manage symptoms.
Dr. B. told me that he'd place it on the left side. He also told me that he hoped I would be willing to complete a questionaire about my symptoms before and after the surgery for MALS. He is doing a study of who are really good candidates for surgical correction of that syndrome. There was pre-op questionare and a post-op questionarre. Since nothing really had improved from before the surgery, it was easy to fill them both out after the fact. As unique as I am, I've never been part of a study. I'm weirdly excited about that.
Soon after Dr. B.left, the most attractive anesthesiologist I have ever seen came in. Seriously, he was so handsome. Awesome eyes, a beard that fit his face perfectly. He was just very fun to look at. He was impressed by my knowledge of myself. He gave me the awful ant-reflux junk. I told him about my history with Scanner/ OR Tables of Death. That would turn out to be the most important thing I told him. I said goodbye to Mom and don't remember anything until the recovery room. He must have given me something really good. After about three hours, the surgery was over and I woke up in recovery.
The thing I remember most about recovery was the pain. It huirt a lot more than I thought it would, especially in the area where the generator was implanted. In retrospect, they created a pocket where pockets do not naturally exsist, it was bound to hurt. It was also where the largest incision was. I was so glad to have my old friend morphine to keep me company! Afteer only an hour ore so in recovery, I was moved to a room. I got to bring along some oxygen this time as my lungs were trying to go on strike and my saturations were dropping a little.
Once I was in a room, I began the Wait for Pee. I wasn't going to write about this part, but figured it would be good for others to know. General anesthesia paralyzes all the muscles, including the bladder. That's why you'll often have a foley catheter placed during surgery. I discovered in June that my bladder is particularly suseptible to freezing up after having a foley in and then taken out. I ended up being sent home with a foley in place in June because my bladder just wouldn't cooperate. Anyway, this time around I didn't have a foley because I was already at risk of infection because I was having something implanted. It was up to me to break through and go on my own. This proved difficult and involved literally hours of trying. I tried different positions, while drinking, even got out of bed to try on a commode. After hours of trying without success, I let the nurse take care of things for me just so they'd leave me alone. After that and my nightime meds, we sertled down for the night. It was a restless night. I had realized the morphine was making my nausea worse, so I wasn't using it and was in a lot of pain. Morning rounds found me in a lot of pain still but eager to go home for my birthday the next day. I convinced them to let me go. I was still in significant pain, but not as nauseated and was now peeing just fine.
Before I left, I had my mom get me a bagel from the cafeteria. I took a bite and almost cried for the joy of it. It was the first taste of food I'd had in over a year that actually tasted good. I ate about a quarter of it then was full. I was ecstatic. Maybe, just maybe this was the answer I'd been hoping for.
Sunday, October 21, 2012
Scared....
About a year ago, after my first emptying scan but before my diagnosis, I joined a support group for those with gastroparesis. I was initally petrified to think that some of those stories could be in my future. Feeding tubes, TPN, central lines, gastric pacemakers. This is the world I would be living in. It was all kind of fascinating in sort of an anthropological sense. I was intrigued to see how some of the people who seemed so desperately ill could find ways to live full lives. There werre many young women who were in college. Many others who worked at least part-time. I began to see how I could find my new normal amid the insanity that is gastroparesis. My view of the disease was two pronged. People were either pretty sick but lived full lives anyways or they were trapped by the illness in their homes doctor's offices or at worst in hospital rooms. The idea of dying from gastroparesis never crossed my mind. How naive I was.
Six months ago I saw a post on the support group announcing the passing of a young man due to gastroparesis. I was saddned by the news in the way that I think most of us are. Every death is tragic, especially when it happens too young. I will admit that news of that first death didn't resonate much with me. Not in the way that others have since, and there have been many. At least 10 that we know of. There have been six in the last two weeks alone.
Each announcement makes me feel a little more vulnerable. I still am relatively healthy in relation to some of my friends. Yes, I have a stimulator now, and it isn't working as well as I had hoped. I am writing this in part to distract myself from the pain from my dinner of a bit of soup and saltines. With each annoucement, I lose a little of that anthropological distance with which I began this journey, and I start to think that it could be me. Not next, not even soon, just someday. Someday tthis insane disease could in fact kill me. That is a bizzare thing to even begin to contemplate.
I try to find some comfort in the fact that no one has ever mentioned more drastic measures like TPN or tubes to me. I know logically that just because I have the stimulatorthat doesn't take the more agressive interventions off my horizon. I can tell my self it won't be me all I want. I never imagined my life would be ruled by such an insidious disease, either.
Six months ago I saw a post on the support group announcing the passing of a young man due to gastroparesis. I was saddned by the news in the way that I think most of us are. Every death is tragic, especially when it happens too young. I will admit that news of that first death didn't resonate much with me. Not in the way that others have since, and there have been many. At least 10 that we know of. There have been six in the last two weeks alone.
Each announcement makes me feel a little more vulnerable. I still am relatively healthy in relation to some of my friends. Yes, I have a stimulator now, and it isn't working as well as I had hoped. I am writing this in part to distract myself from the pain from my dinner of a bit of soup and saltines. With each annoucement, I lose a little of that anthropological distance with which I began this journey, and I start to think that it could be me. Not next, not even soon, just someday. Someday tthis insane disease could in fact kill me. That is a bizzare thing to even begin to contemplate.
I try to find some comfort in the fact that no one has ever mentioned more drastic measures like TPN or tubes to me. I know logically that just because I have the stimulatorthat doesn't take the more agressive interventions off my horizon. I can tell my self it won't be me all I want. I never imagined my life would be ruled by such an insidious disease, either.
Thursday, October 4, 2012
In Which I Become a Cyborg Part One: Getting There
Again I've been seriously lax in updating. Once you read this post I think you'll forgive me. When last I wrote I was fresh out of surgery to fix a rare syndrome. My surgeon wanted me to call his office when we'd reached eight weeks out from that surgery, at which point we'd move on to other surgical options if need be. I am very goal oriented so I went so far as to put a calender entry on my phone for August 16 that read "Call Dr. B." It wasn't that I had no hope that this surgery was going to help. It's because I am a realist. This realism extended to my telling my boss that I would most likely be out for more surgery in the near future.
I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.
As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.
A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.
After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.
So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.
I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.
As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.
A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.
After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.
So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.
Friday, August 24, 2012
A Tale of Two Surgeries Part Two: Showtime!
The weekend before I had surgery to correct Median Arcuate Ligament Syndrome was an anxious one. You'd think that a surgical veteran like me wouldn't contend with those pre-op jitters. You'd be wrong. Sunday morning I even had a nightmare about the surgery. I'm not even sure what it was about. I just remember waking in a cold sweat absolutely positive that I had narrowly escaped some terrifying fate. tried to think positively. I reminded myself countless times that day that I knew what was coming, that I would be fine. In the end though, a lot was going to be different about this surgery, at least on the surface.
This would be the first time that the decision to have surgery and the signature on the consent form would be all mine. That was just too strange to me. Having all of that responsibility also meant that if anything happened or the procedure didn't go as planned, I would have to live with the consequences. Sometimes, being a grown up is way overrated!
This would also be the first time that my beloved surgeon Dr. M. wouldn't be doing my surgery. Not that he could've, he's a bone guy, a pediatric bone guy. Not so helpful when you're looking to do abdominal surgery. Still, I found myself missing him that day. I liked Dr. B. well enough, but one office visit cannot create the relationship I and my parents built with Dr, M. A relationship made of 20 years of quaterly office visits, clinic visits and of course the surgeries. As a small child, I had surgery almost every summer. That is a lot of time for you to get comfortable with someone. That lack of familarity with Dr. B.threw me a bit on surgery eve. At the end of the day, I knew I was in good hands. Dr. B. is at least nationally if not internationally known as an expert in GP. I also knew that anytime I could nap in the middle of the day should be looked at as a gift!
The morning of June 18, my brother and I braved an especially packed rush-hour train and made it to Big Academic Medical Center just at my "call time" of eight. After waiting for nearly an hour in the waiting room, we were herded up to the pre-op area. He helped me change into a gown and slippers, lifted me onto the gurney, and then we settled in to wait. We talked about the meaning of life. Eventually a nurse came, looked fruitlessly for a good vein to start an IV, and promptly left to find someone known for mining those tiny veins. Soon, the expert came and placed an IV. Dr. B. made an appearance, flipping through my chart, introducing himself to my brother, asking if we had questions. Then he was gone. Next the anesthesiology team came in. We went over my history and when they heard that I had a history of reflux, they brought me a medication that tasted akin to what I imagine turpentine tastes like, with a sour lemon aftertaste. Delightful Next it was time to sign the consent, don a stylish hat and say goodbye to my brother. This was it!
Because of the reflux, they let me sit up until we got into the OR. Once they moved me over to the table, they kept my head elevated with foam. One thing I had forgotten in the time since my last surgery was how cold they keep the OR. Thank goodness for toast warm blankets. The room was a hive of activity. The anesthesiologist worked on positioning me, a nurse strapped boots to my legs to help with my circulation and prevent blood clots. (Those things were amazing! I had never had warm feet until they put them on.) Somewhere in the crowd I spotted Dr B. Then the plastic-smelling mask was over my face and I was asleep.
The next thing I remember was that it hurt to breathe. I cried for meds, and eventually was a bit more comfortable. I saw Dr. B. who promised I would soon be in a room and given clear liquids. Soon ended up being an interminable SIX HOURS later! I was never so happy to see a hospital bed.
By now, I had figured out why it hurt to breathe. I had four small incisions scattered over the upper left part of my stomach. These looked like deep paper cuts. I also had one bigger incison where the "main port" went. This was pretty close to my diaphragm, which is why breathing was so unpleasant. Dr. B. had told me that the first 12 hours would be the most painful. He was right. Over the next three days, PT helped me get into my chair, respiratory did treatments every four hours and I was kept comfortable. Aside from having to bring home a souvenir appliance and the logistics inherent in it, I did really well. I didn't feel better yet but was willing to give it time. Dr. B. had told me that it could take up to three months to notice improvement. I wasn't sure I could wait that long, but promised I'd try to be patient.
This would be the first time that the decision to have surgery and the signature on the consent form would be all mine. That was just too strange to me. Having all of that responsibility also meant that if anything happened or the procedure didn't go as planned, I would have to live with the consequences. Sometimes, being a grown up is way overrated!
This would also be the first time that my beloved surgeon Dr. M. wouldn't be doing my surgery. Not that he could've, he's a bone guy, a pediatric bone guy. Not so helpful when you're looking to do abdominal surgery. Still, I found myself missing him that day. I liked Dr. B. well enough, but one office visit cannot create the relationship I and my parents built with Dr, M. A relationship made of 20 years of quaterly office visits, clinic visits and of course the surgeries. As a small child, I had surgery almost every summer. That is a lot of time for you to get comfortable with someone. That lack of familarity with Dr. B.threw me a bit on surgery eve. At the end of the day, I knew I was in good hands. Dr. B. is at least nationally if not internationally known as an expert in GP. I also knew that anytime I could nap in the middle of the day should be looked at as a gift!
The morning of June 18, my brother and I braved an especially packed rush-hour train and made it to Big Academic Medical Center just at my "call time" of eight. After waiting for nearly an hour in the waiting room, we were herded up to the pre-op area. He helped me change into a gown and slippers, lifted me onto the gurney, and then we settled in to wait. We talked about the meaning of life. Eventually a nurse came, looked fruitlessly for a good vein to start an IV, and promptly left to find someone known for mining those tiny veins. Soon, the expert came and placed an IV. Dr. B. made an appearance, flipping through my chart, introducing himself to my brother, asking if we had questions. Then he was gone. Next the anesthesiology team came in. We went over my history and when they heard that I had a history of reflux, they brought me a medication that tasted akin to what I imagine turpentine tastes like, with a sour lemon aftertaste. Delightful Next it was time to sign the consent, don a stylish hat and say goodbye to my brother. This was it!
Because of the reflux, they let me sit up until we got into the OR. Once they moved me over to the table, they kept my head elevated with foam. One thing I had forgotten in the time since my last surgery was how cold they keep the OR. Thank goodness for toast warm blankets. The room was a hive of activity. The anesthesiologist worked on positioning me, a nurse strapped boots to my legs to help with my circulation and prevent blood clots. (Those things were amazing! I had never had warm feet until they put them on.) Somewhere in the crowd I spotted Dr B. Then the plastic-smelling mask was over my face and I was asleep.
The next thing I remember was that it hurt to breathe. I cried for meds, and eventually was a bit more comfortable. I saw Dr. B. who promised I would soon be in a room and given clear liquids. Soon ended up being an interminable SIX HOURS later! I was never so happy to see a hospital bed.
By now, I had figured out why it hurt to breathe. I had four small incisions scattered over the upper left part of my stomach. These looked like deep paper cuts. I also had one bigger incison where the "main port" went. This was pretty close to my diaphragm, which is why breathing was so unpleasant. Dr. B. had told me that the first 12 hours would be the most painful. He was right. Over the next three days, PT helped me get into my chair, respiratory did treatments every four hours and I was kept comfortable. Aside from having to bring home a souvenir appliance and the logistics inherent in it, I did really well. I didn't feel better yet but was willing to give it time. Dr. B. had told me that it could take up to three months to notice improvement. I wasn't sure I could wait that long, but promised I'd try to be patient.
Wednesday, August 22, 2012
A Tale of Two Surgeries Part One: A Rarity
I know, I have been less than stellar at keeping up, but that's because A LOT has been going on. If you recall, I'd just been released from the hospital last we met. Let's pick up our story from there. Beware, this is a long chapter in this story!
The morning of Monday, April 23rd, I awoke and eagerly completed my morning ritual. I was excited to get back to work after eight days in the hospital. First though, I was expected at Big Academic Medical Center for yet another scan. This was the last screening I needed before the motility specialist would clear me to see the surgeon to explore surgical options for treating my gastroparesis. I had already had a four-hour emptying scan and a normally abnormal MRI scan of my brain in the weeks before. I and my motility specialist fully expected this last test to come back normal as well.
The test, an ultrasound of the arteries that feed the gut, is done to rule out a very rare syndrome called Median Arcuate Ligament Syndrome. The disorder has symptoms very similar to gastroparesis, but unlike GP, MALS can be corrected with a simple surgery. It rarely causes symptoms which is why we fully expected the scan to be clear. The tech who performed the ultrasound had a bit of trouble seeing what he needed to, but he got the necessary images and sent me on my way.
The rest of Monday and Tuesday passed rather uneventfully aside from some email traffic with Dr. Lungs as we tried to get a handle on the cough. We agreed that I needed to see the motility specialist to get her opinion. I called to make an appointment, but the soonest available date was in July. On Wednesday when he asked, I gladly gave Dr. Lungs her information with the hope that he'd be able to get me in sooner. I worked from home that day, as has become a great strategy to help me conserve energy in the middle of the week. Around five o'clock that night the motility specialst called. She is always very to-the point when she calls and this time was no different. She had checked my chart while disscussing me with the GI fellow who'd seen me in the hospital. She was surprised to find that the results of the ultrasound I'd had were already back. She was even more surprised to find that the ultrasound had come back showing "severe" stenosis or narrowing of the celiac artery. I had Median Arcuate Ligament Syndrome! She said that she was writing an email to the surgeon who could correct the problem and wanted me to let her know how things progressed.
I was ecstatic! There was a possibility that my symptoms stemmed from MALS and not GP! I immediately started planning a comeback tour of all of my favorite restraunts, dreaming of the day when I could start enjoying food again.
Thursday during a work meeting, my cell phone kept vibrating. Twice I ignored it. When it rang the third time, I ducked out of the meeting to answer it. I was shocked to discover that the surgeon's office was calling already. They were so insistent because they could see me that day! I hastily made arrangements at work to take leave that afternoon, and set off for the appointment just a few hours later.
After making my way to the surgical clinic, checking in and waiting an absurd amount of time in the exam room, I finally met Dr. B. and his Fellow. Dr, B. is a kind yet quiet kind of guy. He quickly understood that this was far from my first time at the surgical rodeo and realized that I speak medicalese fairly well. He set about explaining the procedure I would have, even drawing a diagram of what my arteries looked like. Basically, he would go in and unwrap the nerves and other structures (like my diaphragm) that were putting pressure on the celiac artery and causing symproms. He said I would need one more scan to confirm the compression once and for all, but gave the forms to schedule the surgery anyway, as the ultrasound was definitive enough in his book. He sent me off to have pre-op labs drawn, and then to see his assistant to get on the OR schedule.
The blood draw was quick and painless. The scheduling was a little more complicated. My dad really wanted to be here for the surgery despite the fact that it would be my 10th (ish, I think I eventually called it number 12 on tge day of, who knows?) surgical experience. So there was a bit of coordination that had to happen. I left that day with a date that worked for him, pre-op instructions and some excitement tempered by the reality that the surgery would not in fact cure me of the gastroparesis. The surgeon's hope was only that I would see some symptom improvement Maybe even enough that the gastric nuerostimulator wouldn't be necessary. He said that every person he had seen who had MALS fared differently and that improvement wasn't consistent enough that he could give me any odds. He also said that the stimulator would still be an option for me if I didn't get enough relief. There was certainly a lot to consider.
By Friday morning, there were new plans to be made as the date of the surgery was moved. My dad could no longer come, but I enlisted the help of my brother and eagerly awaited the new date, June 18. What a week it had been. Monday, I went to have a scan that everyone assumed was a formality. By Friday I was scheduled for surgery. Yikes!
First I needed that confirmatory scan, an MRA. That is a Magnetic Resonance Angiogram. It's like an MRI, but it uses sensors and contrast dye to get images of the blood vessels. I had that done at the end of May and quickly heard from Dr. B. that it did confirm MALS and we were a go surgery, now just three weeks away.
Next up: Showtime!
The morning of Monday, April 23rd, I awoke and eagerly completed my morning ritual. I was excited to get back to work after eight days in the hospital. First though, I was expected at Big Academic Medical Center for yet another scan. This was the last screening I needed before the motility specialist would clear me to see the surgeon to explore surgical options for treating my gastroparesis. I had already had a four-hour emptying scan and a normally abnormal MRI scan of my brain in the weeks before. I and my motility specialist fully expected this last test to come back normal as well.
The test, an ultrasound of the arteries that feed the gut, is done to rule out a very rare syndrome called Median Arcuate Ligament Syndrome. The disorder has symptoms very similar to gastroparesis, but unlike GP, MALS can be corrected with a simple surgery. It rarely causes symptoms which is why we fully expected the scan to be clear. The tech who performed the ultrasound had a bit of trouble seeing what he needed to, but he got the necessary images and sent me on my way.
The rest of Monday and Tuesday passed rather uneventfully aside from some email traffic with Dr. Lungs as we tried to get a handle on the cough. We agreed that I needed to see the motility specialist to get her opinion. I called to make an appointment, but the soonest available date was in July. On Wednesday when he asked, I gladly gave Dr. Lungs her information with the hope that he'd be able to get me in sooner. I worked from home that day, as has become a great strategy to help me conserve energy in the middle of the week. Around five o'clock that night the motility specialst called. She is always very to-the point when she calls and this time was no different. She had checked my chart while disscussing me with the GI fellow who'd seen me in the hospital. She was surprised to find that the results of the ultrasound I'd had were already back. She was even more surprised to find that the ultrasound had come back showing "severe" stenosis or narrowing of the celiac artery. I had Median Arcuate Ligament Syndrome! She said that she was writing an email to the surgeon who could correct the problem and wanted me to let her know how things progressed.
I was ecstatic! There was a possibility that my symptoms stemmed from MALS and not GP! I immediately started planning a comeback tour of all of my favorite restraunts, dreaming of the day when I could start enjoying food again.
Thursday during a work meeting, my cell phone kept vibrating. Twice I ignored it. When it rang the third time, I ducked out of the meeting to answer it. I was shocked to discover that the surgeon's office was calling already. They were so insistent because they could see me that day! I hastily made arrangements at work to take leave that afternoon, and set off for the appointment just a few hours later.
After making my way to the surgical clinic, checking in and waiting an absurd amount of time in the exam room, I finally met Dr. B. and his Fellow. Dr, B. is a kind yet quiet kind of guy. He quickly understood that this was far from my first time at the surgical rodeo and realized that I speak medicalese fairly well. He set about explaining the procedure I would have, even drawing a diagram of what my arteries looked like. Basically, he would go in and unwrap the nerves and other structures (like my diaphragm) that were putting pressure on the celiac artery and causing symproms. He said I would need one more scan to confirm the compression once and for all, but gave the forms to schedule the surgery anyway, as the ultrasound was definitive enough in his book. He sent me off to have pre-op labs drawn, and then to see his assistant to get on the OR schedule.
The blood draw was quick and painless. The scheduling was a little more complicated. My dad really wanted to be here for the surgery despite the fact that it would be my 10th (ish, I think I eventually called it number 12 on tge day of, who knows?) surgical experience. So there was a bit of coordination that had to happen. I left that day with a date that worked for him, pre-op instructions and some excitement tempered by the reality that the surgery would not in fact cure me of the gastroparesis. The surgeon's hope was only that I would see some symptom improvement Maybe even enough that the gastric nuerostimulator wouldn't be necessary. He said that every person he had seen who had MALS fared differently and that improvement wasn't consistent enough that he could give me any odds. He also said that the stimulator would still be an option for me if I didn't get enough relief. There was certainly a lot to consider.
By Friday morning, there were new plans to be made as the date of the surgery was moved. My dad could no longer come, but I enlisted the help of my brother and eagerly awaited the new date, June 18. What a week it had been. Monday, I went to have a scan that everyone assumed was a formality. By Friday I was scheduled for surgery. Yikes!
First I needed that confirmatory scan, an MRA. That is a Magnetic Resonance Angiogram. It's like an MRI, but it uses sensors and contrast dye to get images of the blood vessels. I had that done at the end of May and quickly heard from Dr. B. that it did confirm MALS and we were a go surgery, now just three weeks away.
Next up: Showtime!
Wednesday, July 25, 2012
Hospital Days Three -Eight:In Which I Realize this Story Could Take Forever
I realized that if I didn't hurry up, I'd still be blogging my last hospital stay for a year! So, I'm going to try to do the rest of the stay in five paragraphs or less. Away we go!
Day three was Sunday. I saw Dr. Lungs early. We agreed to continue with the status quo to try to get the cough under control. He started to talk about involving the GI team to investigate the reflux that was clearly playing a role in the cough. He left me his cell number and I settled in for a long day. At lunch, I refluxed on my Ensure for hours. Eventually I asked the nurse to have the doctor make me NPO, and order a swallow study the next day. I just wanted to make sure that every thing was working as it should. The doctor quickly agreed and I was started on IV fluids.
Monday. Dr. Lungs came in and told me he was going to have GI come talk to me at some point. They came in the afternoon. After some discussion, it was decided that I'd have another edoscopy the next day, followed by more tests if necessary to find answers. Oh, and the swallow study was unclear in terms of aspiration. So, the day dragged on and that was the end of that day.
Tuesday was scope day. I was again NPO. Transport came and fetched me early and we made the trek to the GI lab. While waiting for the procedure, all of the nurses were trying to give me stuff to stop the cough. When I was brought back to the procedure room,. the anesthesiologist was very worried about me. Truthfully, I was worried about me too Before the GI put me under, I tearfully asked her not to send me home without answers. She promised they wouldn't.The scope didn't find anything aside from some mild inflamation in my esophagus. More tests would be ordered for the next day.
Wednesday morning looked a lot like Tuesday morning. I was brought back to the GI lab. A nurse came and we chatted for a minute about my symptoms while she programmed a receiver I would have with me during the test. Then the real fun started. The back of my throat was sprayed numb and a tube was placed in my nose and fed the length of my esophagus. The end of the tube had a sensor that measured the pH of the stuff in my stomach and esophagus. The receiver had buttons for me to push when I had symptoms, changed position or "ate." The most fun part of the test was that since my main symptom was/is a cough, I had to push that button about 1,000 times in the 24 hours I had the probe.
Thursday was really awful. I coughed non-stop. I was sad to learn that the magnificent Dr. Lungs' time on-call was over. I survived having the the probe taken out. Friday was a long day of waiting for discharge orders that were never written. Finally on Saturday morning the train was set in motion and I was discharged. We didn't really know what the story was. Dr. Lungs suspected reflux, but my numbers were not bad enough to concern GI. Story of my life these days!
Day three was Sunday. I saw Dr. Lungs early. We agreed to continue with the status quo to try to get the cough under control. He started to talk about involving the GI team to investigate the reflux that was clearly playing a role in the cough. He left me his cell number and I settled in for a long day. At lunch, I refluxed on my Ensure for hours. Eventually I asked the nurse to have the doctor make me NPO, and order a swallow study the next day. I just wanted to make sure that every thing was working as it should. The doctor quickly agreed and I was started on IV fluids.
Monday. Dr. Lungs came in and told me he was going to have GI come talk to me at some point. They came in the afternoon. After some discussion, it was decided that I'd have another edoscopy the next day, followed by more tests if necessary to find answers. Oh, and the swallow study was unclear in terms of aspiration. So, the day dragged on and that was the end of that day.
Tuesday was scope day. I was again NPO. Transport came and fetched me early and we made the trek to the GI lab. While waiting for the procedure, all of the nurses were trying to give me stuff to stop the cough. When I was brought back to the procedure room,. the anesthesiologist was very worried about me. Truthfully, I was worried about me too Before the GI put me under, I tearfully asked her not to send me home without answers. She promised they wouldn't.The scope didn't find anything aside from some mild inflamation in my esophagus. More tests would be ordered for the next day.
Wednesday morning looked a lot like Tuesday morning. I was brought back to the GI lab. A nurse came and we chatted for a minute about my symptoms while she programmed a receiver I would have with me during the test. Then the real fun started. The back of my throat was sprayed numb and a tube was placed in my nose and fed the length of my esophagus. The end of the tube had a sensor that measured the pH of the stuff in my stomach and esophagus. The receiver had buttons for me to push when I had symptoms, changed position or "ate." The most fun part of the test was that since my main symptom was/is a cough, I had to push that button about 1,000 times in the 24 hours I had the probe.
Thursday was really awful. I coughed non-stop. I was sad to learn that the magnificent Dr. Lungs' time on-call was over. I survived having the the probe taken out. Friday was a long day of waiting for discharge orders that were never written. Finally on Saturday morning the train was set in motion and I was discharged. We didn't really know what the story was. Dr. Lungs suspected reflux, but my numbers were not bad enough to concern GI. Story of my life these days!
Friday, June 15, 2012
Hospital Day Two: CTs and DVTs?
We are up to April 14 in the telling of this saga. It was a Saturday, which I would soon discover is actually a very good day to get things done in hospitals.
Having gotten exactly no sleep the night before, I was anxious to see Dr. Lungs. Luckily, he liked to stop by early and we soon had a plan for the day. I would get some morphine for the pain This was decided after I told him that all the milder pain meds wreck my stomach now. I'd also have a CT of my sinuses at some point.Then I settled in for the long day that was sure to await me. Breakfast came. It was some kind of Jello, and a meal replacement juice. Yummy.
Sometime after breakfast, the nurse came to give me some more drugs Zofran, steroids,and a teeny tiny amount of morphine, only one ML,not even enough to take the edge of. Oh well,I wouldn't have known if I hadn't tried.
About an hour after breakfast, and a half hour after the morphine, I got extremely nauseous. Worse than I could ever remember since the beginning of GP. It got so bad that I asked for a basin. I asked for my next Zofran really early, and swore off morphine.
Around ten o'clock, transport came to take me to CT.My nurse was there to help lift and she was very worried about how I was looking. She almost called to cancel the scan. I managed to pull myself together enough to convince her to let me go.One benefit of feeling so awful was that I hardly had the energy to care that I was precariously perched on a Scanner Table of Death. I just closed my eyes and focused on not throwing up. It worked and soon I was back in my room.
To distract myself from the mind numbing boredom, I called my dad and cough-talked to him while watching some house flipping show on TV. There are way to many of those shows on, I've decided. </p>
Sometime in the mid afternoon, I began experiencing sharp pain in my left leg. I pulled back the sheet to get a better look. Crap! It was swollen and red looking. Those are the hallmarks of a Deep Vein Thrombosis, or a blood clot in the leg. Think Greg House, and you'll understand why those are no fun.
Anyway,I had a visitor,so I tried to put the pain aside. I couldn't, though and eventually called for my tech,who called the nurse, who called the doctor. No one ever came back to tell me what the doctor said, so I figured that he was either totally unconcerned or had ordered more tests. Supposition two was the correct.one. About twenty minutes after I had set the train in motion, transport was back. This time I'd have an ultrasound of my legs.
The journey to get to ultrasound was an Odyssey through the bowels of the hospital, up and down hallways and elevators until we got to the brightly painted pediatric Emergency Room where the scan would be done. The scan itself consisted of the tech spreading icy gel down the length of my legs, using a transducer as she went to ferret out any hidden clots. After what seemed like forever, she was done, and. I was taken back to get my nightly meds and try not to freak out that I might have a clot.
At midnight, my nurse came in to tell me that the doctor had called to let me know that the scan was clean. Hooray for living to fight another day!
Having gotten exactly no sleep the night before, I was anxious to see Dr. Lungs. Luckily, he liked to stop by early and we soon had a plan for the day. I would get some morphine for the pain This was decided after I told him that all the milder pain meds wreck my stomach now. I'd also have a CT of my sinuses at some point.Then I settled in for the long day that was sure to await me. Breakfast came. It was some kind of Jello, and a meal replacement juice. Yummy.
Sometime after breakfast, the nurse came to give me some more drugs Zofran, steroids,and a teeny tiny amount of morphine, only one ML,not even enough to take the edge of. Oh well,I wouldn't have known if I hadn't tried.
About an hour after breakfast, and a half hour after the morphine, I got extremely nauseous. Worse than I could ever remember since the beginning of GP. It got so bad that I asked for a basin. I asked for my next Zofran really early, and swore off morphine.
Around ten o'clock, transport came to take me to CT.My nurse was there to help lift and she was very worried about how I was looking. She almost called to cancel the scan. I managed to pull myself together enough to convince her to let me go.One benefit of feeling so awful was that I hardly had the energy to care that I was precariously perched on a Scanner Table of Death. I just closed my eyes and focused on not throwing up. It worked and soon I was back in my room.
To distract myself from the mind numbing boredom, I called my dad and cough-talked to him while watching some house flipping show on TV. There are way to many of those shows on, I've decided. </p>
Sometime in the mid afternoon, I began experiencing sharp pain in my left leg. I pulled back the sheet to get a better look. Crap! It was swollen and red looking. Those are the hallmarks of a Deep Vein Thrombosis, or a blood clot in the leg. Think Greg House, and you'll understand why those are no fun.
Anyway,I had a visitor,so I tried to put the pain aside. I couldn't, though and eventually called for my tech,who called the nurse, who called the doctor. No one ever came back to tell me what the doctor said, so I figured that he was either totally unconcerned or had ordered more tests. Supposition two was the correct.one. About twenty minutes after I had set the train in motion, transport was back. This time I'd have an ultrasound of my legs.
The journey to get to ultrasound was an Odyssey through the bowels of the hospital, up and down hallways and elevators until we got to the brightly painted pediatric Emergency Room where the scan would be done. The scan itself consisted of the tech spreading icy gel down the length of my legs, using a transducer as she went to ferret out any hidden clots. After what seemed like forever, she was done, and. I was taken back to get my nightly meds and try not to freak out that I might have a clot.
At midnight, my nurse came in to tell me that the doctor had called to let me know that the scan was clean. Hooray for living to fight another day!
Sunday, June 3, 2012
Catching Up: Hospital Day One::APU
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next weeks, I'll be catching you up. In our time machine, it is now April 13.
On the morning of Friday the 13th, I woke at 7:00 got ready, made sure my bag was packed, that all my electronic gadgets had a charge, and waited. I needed to wait for the hospital to call with a bed assignment, and I needed to wait for the cab I had arranged the night before to pick me up . I figured the cab would either get me to the hospital way before they were ready for me, or that the hospital would need to hold the bed for me until I got there. The second scenario ended up being correct. The hospital called around 9:00 and said they were ready for me. The charge nurse started to tell me to stop at registration, but when she realized how truly bad off I was, she changed her mind and told me to go up to the floor instead. "You'll be in room 412 of the Acute Pulmonary Unit. It sounds like you need to be with us. Let me give you my number in case you need anything while on your way."
Wow, Acute Pulmonary Unit, scary stuff. I knew somewhere in my frazzled brain that my doctor was the assistant director of the unit. It made perfect logical sense that that would be where I'd be admitted. Still, the word acute set off tiny alarm bells in my head. I still needed the cab to come. Finally it did. Twenty minutes and twenty-five dollars later, I was at the hospital. I struggled through the front sliding doors, balancing my overnight bag on my knees, my messenger bag around my neck and still managing not to drive my chair into a wall! Eventually, someone relieved me of the overnight bag and we got into the elevator. After what seemed forever, the doors opened on the fourth floor. My rescuer led me down a short hallway and through a set of double doors. This was APU.
Set up like many hospital units I've been on, it had a central nurses' station and hallways that spoked out from there. My room was at the end of a spoke, pretty far away from the nurses' station. This would prove to be both a blessing and a curse. A blessing because in theory, it would be quieter. A curse because conceivably it could take longer to get help when I needed it. . Once I got changed, in a bed, asked for the same information three times. (No, I'm not hard of hearing, I promise!) the tech finally came to put in my IV. This was a crucial step in getting better. since the reason I was there (ostensibly) was to get IV steroids. Notice I said ostensibly, that will prove important later in this saga.The tech found a decent vein pretty quickly. Unfortunately, the vein was in the crook of my right elbow. Essentially, this made my only good arm and hand useless, since I was at very high risk of losing the access if I moved, talked, even breathed wrong. After a couple of hours I asked to have the line moved to my other already useless hand. Everyone thought I was nuts. Who asks for a needle stick? But you do what you have to do.
Dr. Lungs stopped by to give me a rundown of his treatment plan. I'd have a chest x-ray and labs, both to check for sneaky pockets of infection. I'd get nebulizer treatments and IV steroids for the asthma. He and I decided that we'd hold off on injections of blood thinner for the time being. He said he would order a CT of my sinuses for the next day once I felt a little better.He told me to call if I needed anything.and left me his cell number.
Soon the X-ray tech came, shoved a film behind my back and took his pictures. A tech came and drew blood off my IV line, and I acquainted myself with the TV lineup while checking in online thanks to the Internet capabilities of my e-reader. I received the first dose of steroids through my IV, as well as IV Zofran. Around shift change, the nurse also hung a bag of a strong antibiotic called Levaquin, Dr. Lungs apparently holding on to the idea that this was a very quiet infection.
I tried to settle down for the night around 9:00. I'd had my last round of meds, vitals, and had talked to both parents and was exhausted. I found a show on TV worthy of falling asleep to, lowered the bed to a flatter angle and turned out the sun-bright overhead light. I rolled over and tried to sleep. An hour later, I noticed a weird pain in the ribs along my left side. It was a sharp burning pain. I tried to take the pressure off that side by shifting position. It didn't work. In fact the pain grew worse. Every breath sent a hot knife of pain into my chest. What did I do? Why, I ignored it of course. I like my doctor and didn't want to bug him. I know, he was on call, that's what he was there for. By the time the nurse came to give me my midnight Zofran, I decided to ask for help. She was frustrated that I'd waited so long, but moved quickly to help me. She brought me a wet-heat compress that she lay over my ribs, helped prop me off of that side with pillows, and then paged the doctor.She paged him several times before I realized he wouldn't answer and I would need to ride it out until morning.
There is never any good TV on past midnight. That, coupled with the pain, made for a very long night. Thankfully, morning comes early in hospitals.
On the morning of Friday the 13th, I woke at 7:00 got ready, made sure my bag was packed, that all my electronic gadgets had a charge, and waited. I needed to wait for the hospital to call with a bed assignment, and I needed to wait for the cab I had arranged the night before to pick me up . I figured the cab would either get me to the hospital way before they were ready for me, or that the hospital would need to hold the bed for me until I got there. The second scenario ended up being correct. The hospital called around 9:00 and said they were ready for me. The charge nurse started to tell me to stop at registration, but when she realized how truly bad off I was, she changed her mind and told me to go up to the floor instead. "You'll be in room 412 of the Acute Pulmonary Unit. It sounds like you need to be with us. Let me give you my number in case you need anything while on your way."
Wow, Acute Pulmonary Unit, scary stuff. I knew somewhere in my frazzled brain that my doctor was the assistant director of the unit. It made perfect logical sense that that would be where I'd be admitted. Still, the word acute set off tiny alarm bells in my head. I still needed the cab to come. Finally it did. Twenty minutes and twenty-five dollars later, I was at the hospital. I struggled through the front sliding doors, balancing my overnight bag on my knees, my messenger bag around my neck and still managing not to drive my chair into a wall! Eventually, someone relieved me of the overnight bag and we got into the elevator. After what seemed forever, the doors opened on the fourth floor. My rescuer led me down a short hallway and through a set of double doors. This was APU.
Set up like many hospital units I've been on, it had a central nurses' station and hallways that spoked out from there. My room was at the end of a spoke, pretty far away from the nurses' station. This would prove to be both a blessing and a curse. A blessing because in theory, it would be quieter. A curse because conceivably it could take longer to get help when I needed it. . Once I got changed, in a bed, asked for the same information three times. (No, I'm not hard of hearing, I promise!) the tech finally came to put in my IV. This was a crucial step in getting better. since the reason I was there (ostensibly) was to get IV steroids. Notice I said ostensibly, that will prove important later in this saga.The tech found a decent vein pretty quickly. Unfortunately, the vein was in the crook of my right elbow. Essentially, this made my only good arm and hand useless, since I was at very high risk of losing the access if I moved, talked, even breathed wrong. After a couple of hours I asked to have the line moved to my other already useless hand. Everyone thought I was nuts. Who asks for a needle stick? But you do what you have to do.
Dr. Lungs stopped by to give me a rundown of his treatment plan. I'd have a chest x-ray and labs, both to check for sneaky pockets of infection. I'd get nebulizer treatments and IV steroids for the asthma. He and I decided that we'd hold off on injections of blood thinner for the time being. He said he would order a CT of my sinuses for the next day once I felt a little better.He told me to call if I needed anything.and left me his cell number.
Soon the X-ray tech came, shoved a film behind my back and took his pictures. A tech came and drew blood off my IV line, and I acquainted myself with the TV lineup while checking in online thanks to the Internet capabilities of my e-reader. I received the first dose of steroids through my IV, as well as IV Zofran. Around shift change, the nurse also hung a bag of a strong antibiotic called Levaquin, Dr. Lungs apparently holding on to the idea that this was a very quiet infection.
I tried to settle down for the night around 9:00. I'd had my last round of meds, vitals, and had talked to both parents and was exhausted. I found a show on TV worthy of falling asleep to, lowered the bed to a flatter angle and turned out the sun-bright overhead light. I rolled over and tried to sleep. An hour later, I noticed a weird pain in the ribs along my left side. It was a sharp burning pain. I tried to take the pressure off that side by shifting position. It didn't work. In fact the pain grew worse. Every breath sent a hot knife of pain into my chest. What did I do? Why, I ignored it of course. I like my doctor and didn't want to bug him. I know, he was on call, that's what he was there for. By the time the nurse came to give me my midnight Zofran, I decided to ask for help. She was frustrated that I'd waited so long, but moved quickly to help me. She brought me a wet-heat compress that she lay over my ribs, helped prop me off of that side with pillows, and then paged the doctor.She paged him several times before I realized he wouldn't answer and I would need to ride it out until morning.
There is never any good TV on past midnight. That, coupled with the pain, made for a very long night. Thankfully, morning comes early in hospitals.
Wednesday, May 30, 2012
Catching Up: Weird Illness Chronicles
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. We have now made it up up to April 10, week two of the Coughlympics.
On Monday, I threw myself into work, hoping for a distraction from how badly I felt. It worked to a point. Around lunch, I called the office where I usually see Dr.Lungs to make an appointment. The office told me he wasn't going to be there for two weeks. The practice he's with has two offices and he was at the other one while on call at the hospital. I made an appointment to see him there the next afternoon., arranged for paratranist and let my boss know what was going on. Not that she needed much warning, my cough gave me away. The next morning, paratransit got me to the new office with plenty of time to spare. I drank my breakfast and finished up a book on my Kindle and then headed up to the appointment.
After checking in, a nurse brought me back to a do a mini Pulmonary Function Test called spirometry. This is the first thing I do at every visit to Dr. Lungs. The nurse puts an oh so attractive nose clip across my nose, and I have to breathe into a device hooked up to a computer. The test measures the amount of air you can inhale and exhale. Asthma is actually a disease that impacts how you exhale,. not inhale, even though it feels like the opposite. The test was particularly hard for me that day. Since last September when I began seeing a pulmonologist, we've known that I can't exhale for the required six seconds of the test. We've chalked that up to my positioning. On this day, I couldn't even do it for the second and a half that is my normal. We did the test three times. In the end the nurse handed me the nose clip and the mouthpiece to hang on to in case the doctor wanted to run the test again. I went back to the exam room and eventually Dr. Lungs came in. We talked for a few minutes, made longer by breaks for coughing. He advised that I start the Azithromocin and give steroids a try. He said that if the steroids didn't help, we might be looking on an admit to the hospital to get straightened out. He gave me the first steroid pill in the office, told me not to go to work that day and to e-mail him the next day with an update. I left the office, waited for paratransit, went to work for about an hour and then went home.
At this point, I started feeling a much more intense type of nausea than what I now think of as my "normal" GP-related nausea. I took a rescue of Zofran, which worked, and made a note to let Dr. Lungs know when I e-mailed him the next day.I tried to be as still and quiet as possible the rest of that day. I took my nightly meds and tried to sleep.
The next morning, Wednesday, I learned something critical about myself. I learned that taking a sick day requires just as much commitment from me as does a normal work day. I learned this after working five hours of what was supposed to be a sick day. I e-mailed Dr. Lungs and gave him an update at some point too. His response solidified my love for this doctor. He signed it with his first name. This guy is super cool! He asked me to bump up the steroid, add a regular liquid cough medicine, and e-mail him the next day. All good, I was still free! I let my boss know I would definitely be out the next day, settled in for the night.
The next morning I woke and immediately knew something was very wrong. I have been very hoarse for a very long time,but on this day, I had exactly no voice. Interesting. As the morning wore on I realized that Hadn't eaten or drank anything since the night before. Weird. Even more weird, I was totally fine with that situation. I also noticed a huge increase in cough. Awesome. I e-mailed Dr. Lungs around lunch. The e-mails first line was "I have no idea what's going on anymore." I then caught him up on what had happened. When I was finished composing this whiny laundry list of symptoms, I cautiously hit send, hoping that I could stay free. Because I'm a realist, I also packed an overnight bag.
Not 20 minutes later, I got a response. He asked which hospital of the two where he has privileges did I want to go to? The choice boiled down to the fact that I could be what's called a "direct admit" at one hospital because Dr. Lungs was on call there. Or, I could be admitted through the ER at the other hospital and have some stranger doctor take care of me. Not much of a choice really. After some back and forth about meds and things, I was ready to spend one more bad night at home, with the prospect of a couple of bad hospital nights creating many good nights at home. I was actually looking forward to the next morning. It would be Friday April 13....
Next Up: Hospital Days 1 and 2: APU,CTs and DVTs,
On Monday, I threw myself into work, hoping for a distraction from how badly I felt. It worked to a point. Around lunch, I called the office where I usually see Dr.Lungs to make an appointment. The office told me he wasn't going to be there for two weeks. The practice he's with has two offices and he was at the other one while on call at the hospital. I made an appointment to see him there the next afternoon., arranged for paratranist and let my boss know what was going on. Not that she needed much warning, my cough gave me away. The next morning, paratransit got me to the new office with plenty of time to spare. I drank my breakfast and finished up a book on my Kindle and then headed up to the appointment.
After checking in, a nurse brought me back to a do a mini Pulmonary Function Test called spirometry. This is the first thing I do at every visit to Dr. Lungs. The nurse puts an oh so attractive nose clip across my nose, and I have to breathe into a device hooked up to a computer. The test measures the amount of air you can inhale and exhale. Asthma is actually a disease that impacts how you exhale,. not inhale, even though it feels like the opposite. The test was particularly hard for me that day. Since last September when I began seeing a pulmonologist, we've known that I can't exhale for the required six seconds of the test. We've chalked that up to my positioning. On this day, I couldn't even do it for the second and a half that is my normal. We did the test three times. In the end the nurse handed me the nose clip and the mouthpiece to hang on to in case the doctor wanted to run the test again. I went back to the exam room and eventually Dr. Lungs came in. We talked for a few minutes, made longer by breaks for coughing. He advised that I start the Azithromocin and give steroids a try. He said that if the steroids didn't help, we might be looking on an admit to the hospital to get straightened out. He gave me the first steroid pill in the office, told me not to go to work that day and to e-mail him the next day with an update. I left the office, waited for paratransit, went to work for about an hour and then went home.
At this point, I started feeling a much more intense type of nausea than what I now think of as my "normal" GP-related nausea. I took a rescue of Zofran, which worked, and made a note to let Dr. Lungs know when I e-mailed him the next day.I tried to be as still and quiet as possible the rest of that day. I took my nightly meds and tried to sleep.
The next morning, Wednesday, I learned something critical about myself. I learned that taking a sick day requires just as much commitment from me as does a normal work day. I learned this after working five hours of what was supposed to be a sick day. I e-mailed Dr. Lungs and gave him an update at some point too. His response solidified my love for this doctor. He signed it with his first name. This guy is super cool! He asked me to bump up the steroid, add a regular liquid cough medicine, and e-mail him the next day. All good, I was still free! I let my boss know I would definitely be out the next day, settled in for the night.
The next morning I woke and immediately knew something was very wrong. I have been very hoarse for a very long time,but on this day, I had exactly no voice. Interesting. As the morning wore on I realized that Hadn't eaten or drank anything since the night before. Weird. Even more weird, I was totally fine with that situation. I also noticed a huge increase in cough. Awesome. I e-mailed Dr. Lungs around lunch. The e-mails first line was "I have no idea what's going on anymore." I then caught him up on what had happened. When I was finished composing this whiny laundry list of symptoms, I cautiously hit send, hoping that I could stay free. Because I'm a realist, I also packed an overnight bag.
Not 20 minutes later, I got a response. He asked which hospital of the two where he has privileges did I want to go to? The choice boiled down to the fact that I could be what's called a "direct admit" at one hospital because Dr. Lungs was on call there. Or, I could be admitted through the ER at the other hospital and have some stranger doctor take care of me. Not much of a choice really. After some back and forth about meds and things, I was ready to spend one more bad night at home, with the prospect of a couple of bad hospital nights creating many good nights at home. I was actually looking forward to the next morning. It would be Friday April 13....
Next Up: Hospital Days 1 and 2: APU,CTs and DVTs,
Wednesday, May 16, 2012
Catching Up: Who Let the Dogs Out?
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. We have now made it up up to April 5,the night it all began...
The morning of April 5 dawned clear and bright. I pulled myself to sitting, took a deep breath and suddenly was thrust into a nightmare from which I haven't yet awoken. That deep breath resulted in a deep,barky cough. This is an all-too familiar sound to me. It is the harbinger of impending asthma issues. Or usually it is. I was diligent about doing my asthma regime that morning. I had grown lax about it in recent days in the wake of news that my asthma was well-controlled. I did my inhalers, packed my bag with my liquid lunch and rescue inhaler and headed out to work. The cough hadn't subsided despite being treated. I knew it was going to be a long day. I got to work and turned on my heater/humidifier and slogged through the day. By the end of the day, I had coughed my voice away and my ribs felt like they were being torn out of my chest. By 10:00 that night, I had resigned myself to the fact that I was going to need to see a doctor the next day. This was a Thursday, and I could see the writing on the wall forecasting an ER run over the weekend if I wasn't seen on Friday.I did my nightly med regimen and settled into a restless sleep.
The next morning at 9:00 I called my primary doctor. She is oddly territorial sometimes and I've been chastised before for going to the ER instead of going in to see her. At the same time, now that I am the Queen of Specialists, my primary won't touch me for much. It's just strange. Anyway, all of that was kind of moot since no one answered the phone when I called every five minutes for fifteen minutes. I finally gave up and called Dr. Lungs.I unloaded on the poor receptionist. "Hi, This is Emalie. *bark bark bark* Something's wrong with me *bark bark* and my primary won't answer the *bark bark* phone." Whatever I said convinced her and a few minutes later Dr.Lungs was on the line.
"Emalie? What's going on?" he asked. I had never call with something urgent before and I think it threw him.
"I..don't know. I started coughing yesterday, and usually I wouldn't worry except that it's Friday, and my chest hurts with it." All this was said between breaks to cough.
"Let's up your antihistamine and add a nasal spray to dry up some of that drip into your lungs. I'm also going to call in an antibiotic in case you start to run a fever over the weekend. Give that a hot and call on Monday to let me know how you're doing. Hope you feel better."
So, I slogged through another work day. The blessing of this day was that we were getting early dismissal because it was Good Friday. As soon as I could, I left work, picked up meds at the pharmacy and came home.
Throughout the weekend, I took my meds as directed and continued to cough my head off. Anytime I moved, talked, or ate the coughing would escalate. I was also on the lookout for a fever, the signal to break out the just in case Z-pack that Dr. Lungs had called in. I stayed cool as a cucumber, though. By Sunday night, I realized that the meds weren't working. I still felt awful. I resolved to have Dr. Lungs see me early that week. Little did I know just how much I would be speaking to and seeing Dr.Lungs over the weeks that followed..
To be continued...
Sunday, May 6, 2012
Catching Up: Where Oh Where Could that MRI Be?
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. Today, we learn how MRI's can roam the world freely.
The day after my four-hour emptying study, I was scheduled for an MRI of my brain. This is done to make sure that there is no abnormality of the brain that could explain the symptoms of GP. This time I asked my brother to come with me for the scan. I didn't think I had it in me after the emptying scan to face the MRI on my own. It turned out to be a very good thing that he was with me.
I got to Big Academic Medical Center with little time to spare, having come directly from work. My brother was waiting for me already. I went to check in. The woman at the desk rifled through some papers for a minute. Then she told me I wasn't on he schedule. OK...where was I on the schedule? The woman gave me directions to a new location where she said they were waiting for me. I went and told my brother about the snafu, and we set off to find the right location. After some confusion about directions, we made it to our destination, a sleek office building. The security person said that there was an MRI scanner in the basement, and told us how to get to it. We took the elevator down and followed a hallway with a lot of twists and turns. We got to the MRI. I tried to check and the the tech told me that his scanner wasn't a brain scanner, that I must be at the wrong place. Was he kidding? Where the heck was I supposed to go? He gave us directions to a third place and off we went. At this point I had missed my appointment, and I was nervous that they wouldn't scan me.
I finally got to the right place, checked in and filled out paperwork. They finally called me back and promptly led me to a dressing room to change into a gown. Two things were wrong with this sitiation. 1. No way was I completely changing for this scan. This was not my first time at this particular rodeo. I had been smart enough to wear pants that I knew were MRI-safe that day. 2. The dressing room door was so narrow I couldn't fit through. So, after I asked whether I could just take off the things of my outfit that weren't MRI safe, and finding a bathroom I could use to do it in, I was ready,
The tech who would do the scan came to talk to me and seemed to want every last detail of my medical history. After what seemed an eternity, we were ready to get the show on the reoad. The tech looked like he would not have been able to lift me, so with some direction from me, he and my brother hoisted me easily to the table. At which point I started to panic. This MRI didn't have any straps to help me feel more secure on the Scanner Table of Death. I cried and begged to no avail, until I simply closed my eyes and they slid me into the magnet.
Typically techs talk to me before starting every series of images, I heard not a word from this guy. Every time I heard the telltale pinging signaling the beginning of a new set, my overworked startle reflex went a bit crazy and I jumped a foot. Fun. It eventually finished, A new tech and my brother put me back in my chair, I got changed and we left. I was so glad to be done!
A week or so later, my motility specialist called and said that the MRI had come back abnormal and they needed an old one to compare it to. I called Big Academic Medical Center where I used to live and got them to send me a copy of my five-year-old scan that I'd had done there. After some delay due to being admitted to the hospital (a super-fun time, I'll tell you about it in the next series of posts), I dropped the disc off with my motility specialist. She called and said that comparison showed no new changes between this scan and the old. I didn't think there would be. I mean, I have CP, which means my brain is screwed up anyway. Essentially that's all they found. Hooray for being normally abnormal!
Next up:The 2012 Coughlympics Begin.
The day after my four-hour emptying study, I was scheduled for an MRI of my brain. This is done to make sure that there is no abnormality of the brain that could explain the symptoms of GP. This time I asked my brother to come with me for the scan. I didn't think I had it in me after the emptying scan to face the MRI on my own. It turned out to be a very good thing that he was with me.
I got to Big Academic Medical Center with little time to spare, having come directly from work. My brother was waiting for me already. I went to check in. The woman at the desk rifled through some papers for a minute. Then she told me I wasn't on he schedule. OK...where was I on the schedule? The woman gave me directions to a new location where she said they were waiting for me. I went and told my brother about the snafu, and we set off to find the right location. After some confusion about directions, we made it to our destination, a sleek office building. The security person said that there was an MRI scanner in the basement, and told us how to get to it. We took the elevator down and followed a hallway with a lot of twists and turns. We got to the MRI. I tried to check and the the tech told me that his scanner wasn't a brain scanner, that I must be at the wrong place. Was he kidding? Where the heck was I supposed to go? He gave us directions to a third place and off we went. At this point I had missed my appointment, and I was nervous that they wouldn't scan me.
I finally got to the right place, checked in and filled out paperwork. They finally called me back and promptly led me to a dressing room to change into a gown. Two things were wrong with this sitiation. 1. No way was I completely changing for this scan. This was not my first time at this particular rodeo. I had been smart enough to wear pants that I knew were MRI-safe that day. 2. The dressing room door was so narrow I couldn't fit through. So, after I asked whether I could just take off the things of my outfit that weren't MRI safe, and finding a bathroom I could use to do it in, I was ready,
The tech who would do the scan came to talk to me and seemed to want every last detail of my medical history. After what seemed an eternity, we were ready to get the show on the reoad. The tech looked like he would not have been able to lift me, so with some direction from me, he and my brother hoisted me easily to the table. At which point I started to panic. This MRI didn't have any straps to help me feel more secure on the Scanner Table of Death. I cried and begged to no avail, until I simply closed my eyes and they slid me into the magnet.
Typically techs talk to me before starting every series of images, I heard not a word from this guy. Every time I heard the telltale pinging signaling the beginning of a new set, my overworked startle reflex went a bit crazy and I jumped a foot. Fun. It eventually finished, A new tech and my brother put me back in my chair, I got changed and we left. I was so glad to be done!
A week or so later, my motility specialist called and said that the MRI had come back abnormal and they needed an old one to compare it to. I called Big Academic Medical Center where I used to live and got them to send me a copy of my five-year-old scan that I'd had done there. After some delay due to being admitted to the hospital (a super-fun time, I'll tell you about it in the next series of posts), I dropped the disc off with my motility specialist. She called and said that comparison showed no new changes between this scan and the old. I didn't think there would be. I mean, I have CP, which means my brain is screwed up anyway. Essentially that's all they found. Hooray for being normally abnormal!
Next up:The 2012 Coughlympics Begin.
Wednesday, May 2, 2012
Catching Up: Radioactive Eggs Take Two
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. We find our intrepid heroine about to take on the evil radioactive eggs once more....
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
Saturday, March 17, 2012
Motility Specialist Update
I finally saw the motility specialist on Wednesday! She was really good. She spent a long time with me, gathered lots of history and just listened. Turns out my GI knows this doctor because GI #1 studied under GI #2. Small world. Anyway, I checked in using a super-fancy touch screen system that I will now be lobbying all of my doctors to invest in.No more writing out answers that I know no one can read. I got called back fairly quickly. The nurse was really patronizing, but they rarely aren't. A few minutes later, a cute guy came in. Cute guys always make a new situation easier. He introduced himself as a med student and started taking my history. A lot of history. Not just mine either, my family's too.
After about 15 minutes, the doctor came in. She took more history, including the more recent stuff. I told her as much as I could remember, which was a lot since this has been a really traumatic time for me. She didn't have the results of my first gastric emptying study, which are kind of crucial to confirming the diagnosis. She said she trusted GI #1 and believes that I have GP. She also thinks I'm a good candidate for the gastric stimulator!
Unfortunately, I need three more tests to come back negative before I can see the surgeon. So, a week from Monday I will head downtown to feast on radioactive eggs again. Only this time I will get to freak out for four hours instead of two. Fun times. The surgeon requires this study. I have no earthly idea why, since the motility doc said only one delayed study is needed to make a diagnosis, but whatever. The next scan I will have is an MRI of my brain. This is needed to rule out a neurological cause for my symptoms. I will have that done a week from Tuesday in the afternoon. My brother will be coming with me for that one. The third test I need is a study of the arteries of the stomach to check for nan obstruction. It is very rare but some with GP symptoms actually have an obstruction. If this were the case for me, then I'd have surgery to remove it and all my symptoms would go away, which would be awesome.She said not to get my hopes up since it is so rare.
I'll keep you updated!
After about 15 minutes, the doctor came in. She took more history, including the more recent stuff. I told her as much as I could remember, which was a lot since this has been a really traumatic time for me. She didn't have the results of my first gastric emptying study, which are kind of crucial to confirming the diagnosis. She said she trusted GI #1 and believes that I have GP. She also thinks I'm a good candidate for the gastric stimulator!
Unfortunately, I need three more tests to come back negative before I can see the surgeon. So, a week from Monday I will head downtown to feast on radioactive eggs again. Only this time I will get to freak out for four hours instead of two. Fun times. The surgeon requires this study. I have no earthly idea why, since the motility doc said only one delayed study is needed to make a diagnosis, but whatever. The next scan I will have is an MRI of my brain. This is needed to rule out a neurological cause for my symptoms. I will have that done a week from Tuesday in the afternoon. My brother will be coming with me for that one. The third test I need is a study of the arteries of the stomach to check for nan obstruction. It is very rare but some with GP symptoms actually have an obstruction. If this were the case for me, then I'd have surgery to remove it and all my symptoms would go away, which would be awesome.She said not to get my hopes up since it is so rare.
I'll keep you updated!
Book Review Eight: The Flying Carpet
Hala Jaber's memior of love, loss and war was very engaging and powerful. She, a BBC war correspondent, and her photographer husband spend a lot of time in Iraq at the outset of the U.S. invasion. During an asignment to find a child whose story was compelling enough to help garner donations to a fundraising drive they meet Zahara.
Zahara and her little sister are the sole survivors of a road-side bomb that turned the family car into a fire ball that claimed the lives of their parents and eight siblings as they were fleeing to the safer out skirts of Baghdad. The girls' grandmother sits vigil at Zahara's bedside, while the girl fights to live despite severe burns. Through connections with aid organizations, Hala gets Zahara transferred to a better-equipped hospital. Tragedy strikes.
What follows is a beautiful story of a woman trying to find a way to care for Zahara's family while balancing her life as a war corespondent, wife, and aunt. Good stuff.
Saturday, March 10, 2012
Suffering?
I don't like to think of myself as someone who suffers. I live with the challenges of life with CP. I manage my asthma, and sometimes my depression, when needed. Sure, there are days when I want a break from my chair, want to be able to run, or even just stand for five minutes comfortably. Those are the days when I remind my self that. all things considered I'm pretty lucky. I'm able to care for myself both physically and financially. I do not have seizures or any cognitive issues at all. Other might look at my life and think that because I use a chair, I must suffer. In fact I even had someone look at me once and say "I pray to God every day not to to end up like that!" I'm pretty tough, but that comment brought me to tears. Truth is, I don't suffer.I might struggle and fight a lot of the time but I have a pretty good life. Or I did... Enter gastroparesis.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
I know I've written a lot about living with this new companion. I have tried to be upbeat about it. The truth about this disorder though is it makes people suffer. It makes me suffer. The constant nausea, lack of appetite and even the lack of the sensation of hunger, are awful. In order to function I force a limited number of foods down. I rely on my Zofran as a crutch to make it through the day. It only works to turn the volume on the nausea down from a 7-8 to a 5-6, It only works some of the time, and even then it only works for two hours of the six it's supposed to. These symptoms wear on my emotions as well,
On the other hand, I know I'm still lucky. I have never thrown up. I can still eat by mouth, even if it's limited.I have never had an ER visit for this. I've still got some weight I could stand to lose. All of those things work in my favor.
Work is a challenge. A social life? Forget about it. I am so tired after work every night that I can only muster the energy to shower about three times a week. Weekends are a time when I eat much less than I can afford to during the week.
This week, I had an appointment with Dr. Lungs. All's quiet on the asthma front for once. Near the end of my time with him, I started venting about how awful I felt otherwise. He was attentive but I realized somewhere mid rant that he was not the one I needed to talk to.
After the appointment, I called my GI's office and asked them to have her call me back. A couple of hours later, she did. I told her the Zofran wasn't working, but we agreed that because I need to work there really wasn't anything else to try because anything else there is makes me too out of it to function I was surprised by what I said next. I asked her how other people don't go crazy. I told her that I was swimming in my clothes. She asked when I was seeing the next doctor in the string, the motility specialist. When I told her I was seeing her in April, she got very upset. She got off the phone with me, called the motility and called me right back with news that I would be seen Wednesday or Thursday of this week.
I was so happy I told her that I loved her and that she'd made my day. If I do as well with the stimulator as I hope, she may even have saved my life. At least my quality of life.
Time will tell.
Sunday, February 26, 2012
Book Reviews Five and Six: Critical Care and Bonobo Handshake
I am kind of a medical junkie. I love all the real-life medical shows on TV, movies about medicine and books about it. I think if I had two eyes that worked and two good hands, I migght have gone into medicine. Theresa Brown's Critical Care was a good way to get my medical fix. It's a recounting of Brown's first year as a nurse on a medical oncology floor. She had come to nuring late after teaching English at a majore university, so it was really well written. It was sad, but she was writing about cancer paitents so I wasn't so surprised. It was good.
Vanessa Wood's Bonobo Handshake was good too. It was about the author's time in Congo studying bonobos and chimps. It had a lot of history of the wars fought in Congo and Rwanda. Which was the best part for me.
I am woefully behind on these. I am current on book ten of the year. Stay tuned for more.
Vanessa Wood's Bonobo Handshake was good too. It was about the author's time in Congo studying bonobos and chimps. It had a lot of history of the wars fought in Congo and Rwanda. Which was the best part for me.
I am woefully behind on these. I am current on book ten of the year. Stay tuned for more.
Saturday, February 25, 2012
A Long, and Long Overdue, Update
I'm still here! A lot has happened since last we met. My lamp broke in my bedroom, making blogging tough, as I usually write at night, which is why I didn't tell you until now.
First, we lost my maternal grandfather on February 9. He'd had a good life, but I wasn't ready for him to go. He has had Parkinson's for my whole life. He and I had an unspoken bond. We both inhabited bodies that do not listen. He understood being "broken". He got that part of me better than anyone else in my family can. Now he's not struggling. I'm relieved for him. I haven't seen him in about a year and a half. Everyone says that's a good thing.
I went home to attend the service. It was good to see everybody. My three-year-old niece was very excited to have me stay with her. We watched The Princess and the Frog a lot.We went to playgroup, where she introduced me as "her" Emma. When one of her playgroup friends came up to say hi, she came and said again that I was hers. It was pretty cool.
As far as health stuff, I am kind of all over the place. I finally got the Zofran about a month ago. It takes the edge off the nausea, but I still feel awful. Side effects have been pretty bad and I am just starting a new medicine to counteract that. Crossing my fingers that straightens me out. In other news, it is 44 days until I see GI number two. I can finally see the end of this part of the tunnel. One day at a time.
First, we lost my maternal grandfather on February 9. He'd had a good life, but I wasn't ready for him to go. He has had Parkinson's for my whole life. He and I had an unspoken bond. We both inhabited bodies that do not listen. He understood being "broken". He got that part of me better than anyone else in my family can. Now he's not struggling. I'm relieved for him. I haven't seen him in about a year and a half. Everyone says that's a good thing.
I went home to attend the service. It was good to see everybody. My three-year-old niece was very excited to have me stay with her. We watched The Princess and the Frog a lot.We went to playgroup, where she introduced me as "her" Emma. When one of her playgroup friends came up to say hi, she came and said again that I was hers. It was pretty cool.
As far as health stuff, I am kind of all over the place. I finally got the Zofran about a month ago. It takes the edge off the nausea, but I still feel awful. Side effects have been pretty bad and I am just starting a new medicine to counteract that. Crossing my fingers that straightens me out. In other news, it is 44 days until I see GI number two. I can finally see the end of this part of the tunnel. One day at a time.
Sunday, January 29, 2012
I'm a Lemon
It's been awhile since I wrote about gastroparesis. It is still out of control.I stopped the domperidone about three weeks ago. I've been subsisting on liquid nutrition, sport drink, ginger ale and saltines since. I have come to realize that the brain requires nutrition just as much as the body. I call myself a space cadet at work. It is very hard to focus, follow through, and generally be productive when you can't even stand the idea of food, say nothing about the act of eating.Fun times.
I missed half a day of work this week. The first time I've missed time because of GP since July. All because I went to a restaurant for lunch. I was already really nauseated and the food smells made it much worse. I came home and waited for the phenergran to kick in. It did eventually. In the process it made me too dopey to function. I still don't have my Zofran because my insurance company needs a mountain and a half of paperwork filled out before they cover it. I am so desperate for it that I called the pharmacy to see how much it would be if I paid out-of-pocket. Nearly $500.00. I guess I'll keep fighting with the insurance company.
Missing time this week made me realize that I'll need to have a frank conversation with my supervisors about what's going on. I can no longer pretend my way through the days. I am a lot slower to get stuff done. I am scared to have this conversation. I know everyone will be supportive. They have been nothing but supportive through everything this year. I just feel like I sold them a lemon.
We'll see.
I missed half a day of work this week. The first time I've missed time because of GP since July. All because I went to a restaurant for lunch. I was already really nauseated and the food smells made it much worse. I came home and waited for the phenergran to kick in. It did eventually. In the process it made me too dopey to function. I still don't have my Zofran because my insurance company needs a mountain and a half of paperwork filled out before they cover it. I am so desperate for it that I called the pharmacy to see how much it would be if I paid out-of-pocket. Nearly $500.00. I guess I'll keep fighting with the insurance company.
Missing time this week made me realize that I'll need to have a frank conversation with my supervisors about what's going on. I can no longer pretend my way through the days. I am a lot slower to get stuff done. I am scared to have this conversation. I know everyone will be supportive. They have been nothing but supportive through everything this year. I just feel like I sold them a lemon.
We'll see.
Wednesday, January 25, 2012
Book Reviews Three and Four: Dexter in the Dark and Dexter by Design
I decided to make this book post a joint review of two books that are part of a series. Jeff Lindsay's friendly serial killer is about to take the plunge. Mild-mannered forensic geek Dexter Morgan has a dark secret. He likes to kill people by night. He follows a strict code in order to ensure that he only targets those who are guilty of often heinous crimes. He accidently proposes to his long time girlfriend, who has two children by a scumbag, and that's pretty much all you need to know about the plots.
These books were only mediocre at best. I love the TV show based on them, but honestly, these were only good because of that show.
Oh well, Books number five and six were and are amazing. Stay tuned!
These books were only mediocre at best. I love the TV show based on them, but honestly, these were only good because of that show.
Oh well, Books number five and six were and are amazing. Stay tuned!
Saturday, January 21, 2012
Glee About Glee, Mostly
I resisted the Glee phenomena for a long time. Singing high schoolers just didn't do it for me. Maybe because I once was a singing high-schooler. Though I tend to resist all pop-culture trends until they are are no longer trendy. I have done that with all popular book series of recent years. Twilight, The Hunger Games, The Millennium trilogy, I came late to all of those parties. With the exception of Twilight, I was glad I did. Glee has largely been another fun discovery.
I was not totally ignorant of the innovative path Glee was breaking. I knew that the show embraced diversity. That there was a character who used a wheelchair, a character who was openly gay and another who had Down Syndrome. I did not feel compelled to watch until boredom drove me to it one day last year. Yes, it is good. Some things are a little schmaltzy. The characters with disabilities called themselves "handi-capable" which is a bit too politically correct for me. There was one episode where Artie, the guy who uses a chair got this expensive jet-pack thing that helped him sort of walk.And then there was a highly offensive storyline about open adoption. But mostly it is a good show, with decent music and good messages about accepting difference in others.
This week's epsode focused a lot on Artie and Becky Jackson, the henchman for Sue Sylvester who also has Down Syndrome. Becky sets her sights on Artie and wants to go out with him. The most interesting thing about that story line is how they approached voice-overs. She sounds like the Queen of England. She says that it's because in her head she can sound like anyone she wants. Nice thought.
Good job Glee.
Friday, January 20, 2012
"But you look good!"
I have always been a big girl. It's in my genes. Plus I loved to eat. Since about age 13, I steadily gained weight. I never know for sure how much I weigh since no doctor's offices have wheelchair scales. I gained the requisite "freshman 15" (and then some) in college. Easily accessible food is just plain evil.
When I moved away I started unintentionally losing weight. The stress of trying to make it on my own coupled with limited food choices meant that I lost about 15 pounds in the first two and a half years of living like a grown-up. I got some help to cook better meals, and I think I gained five of those pounds back.
Then I got gastroparesis. I have been symptomatic since July 8, 2011. That's the last day that I ate a "real" meal comfortably. I remember what it was, too. Homemade macaroni and cheese with bacon. I no longer remember what it tasted like. After that meal, all hell broke lose. In the six long months since, I've lost by my estimation between forty and fifty pounds. That's about 2 pounds a week. Without trying. I'm tempted to ratchet up that estimate given how my clothes have been fitting (or not) lately. Since I can't weigh myself, the fit of my clothes is the best tool I have for guessing my weight. Eating an average of 800-1,00 calories a day, mostly in liquid form, is bound to show eventually,
When I'm so nauseated I can't think about anything else, there are few words that frustrate me more than the seemingly innocuous "But you look good!" Thanks. I am malnourished and very sick. If I had started out skinny and lost this much this fast, you would be more worried. Not that I want people to worry. I just want people to understand that while I might look great, I certainly do not feel great. So thanks for the compliment.
When I moved away I started unintentionally losing weight. The stress of trying to make it on my own coupled with limited food choices meant that I lost about 15 pounds in the first two and a half years of living like a grown-up. I got some help to cook better meals, and I think I gained five of those pounds back.
Then I got gastroparesis. I have been symptomatic since July 8, 2011. That's the last day that I ate a "real" meal comfortably. I remember what it was, too. Homemade macaroni and cheese with bacon. I no longer remember what it tasted like. After that meal, all hell broke lose. In the six long months since, I've lost by my estimation between forty and fifty pounds. That's about 2 pounds a week. Without trying. I'm tempted to ratchet up that estimate given how my clothes have been fitting (or not) lately. Since I can't weigh myself, the fit of my clothes is the best tool I have for guessing my weight. Eating an average of 800-1,00 calories a day, mostly in liquid form, is bound to show eventually,
When I'm so nauseated I can't think about anything else, there are few words that frustrate me more than the seemingly innocuous "But you look good!" Thanks. I am malnourished and very sick. If I had started out skinny and lost this much this fast, you would be more worried. Not that I want people to worry. I just want people to understand that while I might look great, I certainly do not feel great. So thanks for the compliment.
Tuesday, January 17, 2012
"The World Isn't Beautiful,Therefore It Is"
The title of this post comes from an amazing book Kino no Tabi and neatly sums up my attitude today. sort of. My thinking is kind of screwy on this. If the beauty of the world stems from the fact that is not really beautiful, my world must be absolutely gorgeous right now.If that's the case, why can't I see any of the beauty that must be in plain sight?
Life is very hard right now. I question my ability to continue doing everything I do on a daily basis. I work, I manage my health as well as I can, I read, I sleep,again as well as I can, I write, I get up and I do it all over again. This is not living, this is existing. I used to have interests,. Many of them. Movies, music, politics, disability issues, American Sign Language, hockey and museums chief among them. Now my sole interests center around heading off or treating gastroparesis symptoms and staying attuned to my body to try to avoid that spacey low blood sugar feeling from not eating. When I get that way, I force myself to eat, regardless of how ill-advised the idea seems. I miss liking eating and food. Now, every bite I take carries so many questions. Will this make me feel worse? How many calories does this have? Is there something else that is more nutritious or has more calories available? As my weight continues to fall, these last two questions are growing importance. I am not restricting by choice but because any experimentation thus far has yielded only negative consequences.
I planned for an ER trip today. What kind of person does that?
Life is very hard right now. I question my ability to continue doing everything I do on a daily basis. I work, I manage my health as well as I can, I read, I sleep,again as well as I can, I write, I get up and I do it all over again. This is not living, this is existing. I used to have interests,. Many of them. Movies, music, politics, disability issues, American Sign Language, hockey and museums chief among them. Now my sole interests center around heading off or treating gastroparesis symptoms and staying attuned to my body to try to avoid that spacey low blood sugar feeling from not eating. When I get that way, I force myself to eat, regardless of how ill-advised the idea seems. I miss liking eating and food. Now, every bite I take carries so many questions. Will this make me feel worse? How many calories does this have? Is there something else that is more nutritious or has more calories available? As my weight continues to fall, these last two questions are growing importance. I am not restricting by choice but because any experimentation thus far has yielded only negative consequences.
I planned for an ER trip today. What kind of person does that?
Sunday, January 15, 2012
Book Review Two: The Help
Kathryn Stockett's debut effort The Help will forever be a favorite of mine. It is at times hilarious,at others heartbreaking. It is an important book.
Skeeter, Hillly, and Elizabeth are best friends in Jackson Missippi in 1962. They are white and well off. Each of their families employs a black woman as a maid. Aibileen and Minny are best friends too. They live in the poor section of Jackson. They each work as maids and nannies for white families of Jackson. This is the story of what happens when these two worlds colide.
After Hilly ddeclares her intention to build her maid Aibleen a seperate bathroom to reduce her family's risk of catching disease from Aibileen, Skeeter decides to write the stories of the maids of the city. What follows is an examination of the Civil Rights movement through these these women's stories.
I loved how this book used real historical events to spotlight the racial tensions in the country. Everything from the student sit-ins at Woolworth's to the Freedom Riders and Dr. King's March on Washington were mentioned/ When you learned about the Civil Rights Movement you often only heard about the leaders who fearlessly faced danger, went to jail or even died for the cause. The people in this book are different. They are afraid. They look at the monumental changes on the horizon with suspicion and distrust. This is refreshing to see in a telling of the Civil Rights story.
Read this book. Plain and simple.
Skeeter, Hillly, and Elizabeth are best friends in Jackson Missippi in 1962. They are white and well off. Each of their families employs a black woman as a maid. Aibileen and Minny are best friends too. They live in the poor section of Jackson. They each work as maids and nannies for white families of Jackson. This is the story of what happens when these two worlds colide.
After Hilly ddeclares her intention to build her maid Aibleen a seperate bathroom to reduce her family's risk of catching disease from Aibileen, Skeeter decides to write the stories of the maids of the city. What follows is an examination of the Civil Rights movement through these these women's stories.
I loved how this book used real historical events to spotlight the racial tensions in the country. Everything from the student sit-ins at Woolworth's to the Freedom Riders and Dr. King's March on Washington were mentioned/ When you learned about the Civil Rights Movement you often only heard about the leaders who fearlessly faced danger, went to jail or even died for the cause. The people in this book are different. They are afraid. They look at the monumental changes on the horizon with suspicion and distrust. This is refreshing to see in a telling of the Civil Rights story.
Read this book. Plain and simple.
Saturday, January 14, 2012
This Book Post Has Been Hijacked to Tell You I'm A Failure
I was going to write all about how amazing The Help is. But now I need to tell a different story. Last time I wrote, I said that I was fairly sure that I would be deemed to have failed the one safe drug there was to try for my GP. I was told to call my gastroenterologist two weeks after starting the drug. Today makes two weeks. So, because I have felt no relief, I wanted to actually speak to her and begin to formulate a plan. I called the office Thursday afternoon.I asked them to have her call me back so I could talk to her about how things had gone while I have been on the med. She called me back late that night. We had a good long talk, I told her I didn't think the drug was effective. I have been having a lot pain within about a half an hour of each dose. She said she was concerned, that I really shouldn't have pain. She then advised to try the drug at full strength for one more week (I still needed to add the fourth daily dose that night.) If I didn't notice a difference after that time, she gave me the green light to stop it. The next part of the conversation, while I knew it was coming, was difficult.
She said, "We talked about this a little before, but I think it's time to talk about you seeing the surgeon for the stimulator." The gastric neurostimulator is a small battery-powered device that sits under the skin and has two tiny wires that are implanted into the wall of the stomach. It sends electrical stimulation to the nerves of the stomach that overrides the signals of nausea that those nerves constantly send to the brain of some people with GP.
"OK" I said, because realistically what choice do I have? This device could really improve my quality of life.
I am a surgical veteran, but I only know about Orthopaedic Land. General (abdominal) surgery is a new adventure.
I fumbled to open a Word document as she gave me the name and number for another gastroenterologist who works at Big Academic Medical Center in the city where I live. My current GI is not affiliated with a surgeon, which is kind of important, since we are talking about surgery. So, I need to be seen by this new GI and be evaluated by the surgeon. My current GI told me that GI number two only works part time so it might be awhile before I could get in to see her. She said she'd call on Tuesday this week and fill in GI number two and push to get me in soon.
In the meantime she agreed to call in a prescription for a super awesome anti-nausea drug, Zofran. I had this a few months ago while in the hospital for my asthma. It was like magic. She called in a lot apparently. I don't have it yet because it required prior authorization before my insurance will cover it.
So yesterday, I called GI number two and made an an appointment. In mid-April. This will be a long nearly three months. That appointment will just be a consult, not even the time to schedule the surgery. Who knows when that will be.
Keep your fingers crossed that my GI can work her magic and get me in soon!
She said, "We talked about this a little before, but I think it's time to talk about you seeing the surgeon for the stimulator." The gastric neurostimulator is a small battery-powered device that sits under the skin and has two tiny wires that are implanted into the wall of the stomach. It sends electrical stimulation to the nerves of the stomach that overrides the signals of nausea that those nerves constantly send to the brain of some people with GP.
"OK" I said, because realistically what choice do I have? This device could really improve my quality of life.
I am a surgical veteran, but I only know about Orthopaedic Land. General (abdominal) surgery is a new adventure.
I fumbled to open a Word document as she gave me the name and number for another gastroenterologist who works at Big Academic Medical Center in the city where I live. My current GI is not affiliated with a surgeon, which is kind of important, since we are talking about surgery. So, I need to be seen by this new GI and be evaluated by the surgeon. My current GI told me that GI number two only works part time so it might be awhile before I could get in to see her. She said she'd call on Tuesday this week and fill in GI number two and push to get me in soon.
In the meantime she agreed to call in a prescription for a super awesome anti-nausea drug, Zofran. I had this a few months ago while in the hospital for my asthma. It was like magic. She called in a lot apparently. I don't have it yet because it required prior authorization before my insurance will cover it.
So yesterday, I called GI number two and made an an appointment. In mid-April. This will be a long nearly three months. That appointment will just be a consult, not even the time to schedule the surgery. Who knows when that will be.
Keep your fingers crossed that my GI can work her magic and get me in soon!
Tuesday, January 10, 2012
The Little Girl Inside of Me
The difficulties with my GP continue, I'm now on Domperidone three times a day, with the last increase coming Thursday. Today was a horrible day. I had the worst nausea I have ever had, didn't eat, barely made it through work. I nearly cried twice at work from feeling so badly. Nausea is perhaps the worst physical sensation I know. there is very little I can do to to lessen the sensation. Some call it "crushing" and I agree.
Today as I struggled to put on a good face at work and simply get through the day, I pictured myself playing protector to this little girl at the core of my soul. She was scared. She was alone. The space she was inhabiting was dark and cold. She cried. She needed me to be strong for the world, So I was.
Now though, with the rest of the world shut away and the busyness of work done, I have nothing left. I need something to change soon. I'm 90% sure that my trial with Domperidone will be considered a failure and I'll be looking at a surgical solution for symptom management. Want to know something absolutely insane? I WANT surgery! If I could have one wish, it wouldn't be for a million dollars, a new house, or a world tour. I would wish for one day of normal eating, nausea free. My soul girl needs just one day.
Today as I struggled to put on a good face at work and simply get through the day, I pictured myself playing protector to this little girl at the core of my soul. She was scared. She was alone. The space she was inhabiting was dark and cold. She cried. She needed me to be strong for the world, So I was.
Now though, with the rest of the world shut away and the busyness of work done, I have nothing left. I need something to change soon. I'm 90% sure that my trial with Domperidone will be considered a failure and I'll be looking at a surgical solution for symptom management. Want to know something absolutely insane? I WANT surgery! If I could have one wish, it wouldn't be for a million dollars, a new house, or a world tour. I would wish for one day of normal eating, nausea free. My soul girl needs just one day.
Sunday, January 8, 2012
My Bucket List Inspired by Zach Anner.
All my life I've been on the lookout for someone that looks like me on TV. I have been drawn to shows and movies featuring actors or storylines about disability. I remember being really excited when Mr. Mcfeely's grandaughter was a little girl who had spina bifida on Mister Roger's Neighborhood. I was six. I have never seen anybody with cerebral.palsy in a TV show, with whom I could relate. Not really. There have bee a few over the years like hilarious comedian Josh Blue, or acteress Geri Jewell, who I love because they seem so very accepting of their disabilities. The abilty to laugh at myself is something I do prettywell. These two are masters at that.
Then last summer, the world met Zach Anner. He competed in a reality show on OWN where the prize was a TV show produced by the network. Zach beat out eight other contestantants (he tied with another person) and won his own show! He is smart, articulate and fantastically funny. He also has CP. He looks almost exactly like me in the way he carries his body. His feet rarely meet the footrests of his chair. He often sits cock-eyed. His eyes are even crossed. Awesome.
His show is a travel show. Each episode features Zach exploring a different city. So far he's been to New York, Seattle Las Angles and Las Vegas. Each show kind of follows a pattern. He does something to explore local culture, a food-centric thing, and an andventure or sporty thing. He went sky diving in Vegas! Let me remind you, he uses a wheelchair. And he went skydiving. Indoors, but still. I NEED to get to Vegas. Who wants to come with me?
Then last summer, the world met Zach Anner. He competed in a reality show on OWN where the prize was a TV show produced by the network. Zach beat out eight other contestantants (he tied with another person) and won his own show! He is smart, articulate and fantastically funny. He also has CP. He looks almost exactly like me in the way he carries his body. His feet rarely meet the footrests of his chair. He often sits cock-eyed. His eyes are even crossed. Awesome.
His show is a travel show. Each episode features Zach exploring a different city. So far he's been to New York, Seattle Las Angles and Las Vegas. Each show kind of follows a pattern. He does something to explore local culture, a food-centric thing, and an andventure or sporty thing. He went sky diving in Vegas! Let me remind you, he uses a wheelchair. And he went skydiving. Indoors, but still. I NEED to get to Vegas. Who wants to come with me?
Friday, January 6, 2012
The One Where I Talk About Books
Every year I set a goal to read 52 books. I can never read fast enough. Usually I hit 32ish. This year with the help of my e-reader, I hope to reach it! My first book of the year was the young adult smash hit Mockingjay by Suzanne Collins. The third installment to the Hunger Games trilogy was an appropriator end to this adventurous series. Here's a quick summary of the series.
Katniss Everdeen lives in a world kind of like the U.S. of today, but not really called Panem. It is set in the near future and the parcels of land that make up Panem are distinguished by the resource(s) they bring to the Capitol. District 12 where Katniss lives is a coal mining superpower. Other districts are know for their fishing sailing prowess or their ability to produce food. Regardless of which district you are from, it is difficult being a child in Panem. For sport, two children from each district are selected to participate in an event called The Hunger Games. 24 children are set free in a tightly controlled environment. The rest you'll have to imagine or read for yourselves.
I liked this book a lot. My only negative feedback is that these seem too harsh to be marketed to kids. Some of the story is very dark and graphic.
Next up is The Help. Watch for my review of that soon!
Katniss Everdeen lives in a world kind of like the U.S. of today, but not really called Panem. It is set in the near future and the parcels of land that make up Panem are distinguished by the resource(s) they bring to the Capitol. District 12 where Katniss lives is a coal mining superpower. Other districts are know for their fishing sailing prowess or their ability to produce food. Regardless of which district you are from, it is difficult being a child in Panem. For sport, two children from each district are selected to participate in an event called The Hunger Games. 24 children are set free in a tightly controlled environment. The rest you'll have to imagine or read for yourselves.
I liked this book a lot. My only negative feedback is that these seem too harsh to be marketed to kids. Some of the story is very dark and graphic.
Next up is The Help. Watch for my review of that soon!
Sunday, January 1, 2012
A Different Kind of Different
Happy New Year all! I hope you all had a lovely first day of 2012 and are sufficiently recovered from whatever level of celebration you indulged in last night. I rang in the new year from my bed, asleep. This week has been just awful as far as GP symptoms. Constant nausea and pain. So I went to bed before the magical midnight hour. Anyway, this post is not really about New Years Eve. It's about difference.
I have been different my whole life. Growing up with CP I never fit in anywhere. I could never fully participate in the activities my peers enjoyed, I had some friends who very athletic. I obviously was not. Though I'm not sure if that was related to my disability or genetics, my whole family is not very athletic. We are theatre people. My friends and I had other things in common, but I rarely hung out with anyone outside of school. The majority of the houses in the small town I lived in were not very friendly for someone with mobility problems. This made my childhood and adolescence a rather lonely time. I desperately wanted friends who "got" me. I could not really find anyone like that in my peer group until college. I got along much better with adults. That makes sense when you consider that my only extra circular activity as a child consisted of the few hours a week I spent in OT and PT, I was surrounded by adults all of the time. I was too different from my peers to truly belong among them, but I couldn't relate to the adults in my life appropriately either. I was in limbo.
Then I went away to school. At 14, I asked my parents to ask my school district to send me to a residential school for kids with disabilities in my state. Yes, you read that right. I asked to go away. I remember the main thing I wished for when I spoke to my parents was "not to be the only one" anymore. I wanted to be somewhere where there were kids who were struggling in the same ways I was. They agreed. I got to school, but I still never felt like I belonged. There were people there with all kinds of disabilities. I had friends with all kinds of challenges, but I only met two other students whose stories were similar enough to mine that we grew close. Even in this environment I gravitated toward the adults.
As difficult and lonely as these years were, they taught me to accept that I would always be different. That things were never going to be as easy for me as they seemed to be for others. I developed various strategies for handling the probing questions and penetrating stares of strangers. I finally had living with a disability pretty well under control.
Then I was diagnosed with gastroparesis. This is a whole other ballgame. Not many people can relate to using a wheelchair, living with spasticity or blindness. Everyone needs to eat though. It is hard to be dealing with a disorder whose symptoms are largely hidden but that are so debilitating. I now must learn to be a different kind of different. I am not sure if I have it in me to do the 20+ years worth of work to accept this new facet of my identity.
I have been different my whole life. Growing up with CP I never fit in anywhere. I could never fully participate in the activities my peers enjoyed, I had some friends who very athletic. I obviously was not. Though I'm not sure if that was related to my disability or genetics, my whole family is not very athletic. We are theatre people. My friends and I had other things in common, but I rarely hung out with anyone outside of school. The majority of the houses in the small town I lived in were not very friendly for someone with mobility problems. This made my childhood and adolescence a rather lonely time. I desperately wanted friends who "got" me. I could not really find anyone like that in my peer group until college. I got along much better with adults. That makes sense when you consider that my only extra circular activity as a child consisted of the few hours a week I spent in OT and PT, I was surrounded by adults all of the time. I was too different from my peers to truly belong among them, but I couldn't relate to the adults in my life appropriately either. I was in limbo.
Then I went away to school. At 14, I asked my parents to ask my school district to send me to a residential school for kids with disabilities in my state. Yes, you read that right. I asked to go away. I remember the main thing I wished for when I spoke to my parents was "not to be the only one" anymore. I wanted to be somewhere where there were kids who were struggling in the same ways I was. They agreed. I got to school, but I still never felt like I belonged. There were people there with all kinds of disabilities. I had friends with all kinds of challenges, but I only met two other students whose stories were similar enough to mine that we grew close. Even in this environment I gravitated toward the adults.
As difficult and lonely as these years were, they taught me to accept that I would always be different. That things were never going to be as easy for me as they seemed to be for others. I developed various strategies for handling the probing questions and penetrating stares of strangers. I finally had living with a disability pretty well under control.
Then I was diagnosed with gastroparesis. This is a whole other ballgame. Not many people can relate to using a wheelchair, living with spasticity or blindness. Everyone needs to eat though. It is hard to be dealing with a disorder whose symptoms are largely hidden but that are so debilitating. I now must learn to be a different kind of different. I am not sure if I have it in me to do the 20+ years worth of work to accept this new facet of my identity.
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