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.

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!

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.

"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.

"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?

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.

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!

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.

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?

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!

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.