Tuesday, December 21, 2010

Keeping the faith

Yesterday, I had an appointment with my nurse practitioner to discuss the results of the test I mentioned in my last entry.  Unfortunately, the results were not good.  %25 of the time I try to swallow, there is no peristalsis entirely.  (Meaning that I try to swallow and I can't at all.)  %50 of the time I DO manage to swallow, I can't swallow properly.  This is somewhat discouraging news, as it's markedly worse than my results from three years ago.  While it doesn't mean anything immediately other than new medications, it does put the future in perspective.  What will my life be like in five years?  Will I be able to eat solid food?  Will I even be able to eat at all, or will I have rely on tubes for my nutrition?

I try not to think about these things.  It's counterproductive--new technologies emerge every day. There may be better treatment by the time I badly need one.  Furthermore, it's not particularly relevant to my life right now.  After all, I'm currently able to eat pretty well and I'm at a healthy weight.

At times like these, I find it valuable to remember my faith.  Despite being an atheist, I have faith in many things.  I have faith that medicine and technology will continue to advance.  I have faith in the love and support of my friends and family.  But most of all, I have faith in myself.  I have faith that I will be able to keep going, no matter what.  This is not to say I will overcome my health problems and somehow miraculously improve--on the contrary, I am relatively certain I won't.  Rather, I have faith that I will continue to grow, change, and find things that I love even during times of hardship.  And for now, there are many things in my life that bring me joy.  The future may be uncertain, but the present is bright.

Saturday, November 20, 2010


A few months ago, I started having some trouble swallowing.  As any new symptom is a cause for investigation, my doctor scheduled me for an endoscopy with an esophageal manometry study (EMS).  During an endoscopy, the stomach and duodenum (first part of the small intestine) are examined with a small camera.  An EMS measures the contractions made by swallowing using a thin tube passed through the nose into the throat.  Because having a camera in your innards is generally not the most comfortable of procedures, an endoscopy requires sedation, and so I needed to find a poor, unsuspecting chump friend to give me a ride home.  Yesterday, this person took the form of my friend David. 

David and I have been friends since freshman year of high school.  We didn't really become close until sophomore year when we sat together in Chemistry, during which I would relieve my boredom through systematically destroying his erasers by poking small holes in them until they fell apart.  Since then, we have shared an amiably antagonistic friendship.  I think this crappy cell-phone picture sums up our relationship pretty well:

David is generally a fine, upstanding citizen and a trusted friend.  When I feel sick, he often asks me if there's anything he can do to help.  I finally took him up on his offer and asked him to drive me to and from my endoscopy.  The poor guy really didn't know what he was getting into when he said yes.

I anticipated that I might be a handful and so to assuage my guilt, I baked some chocolate cupcakes in recompense for giving me a ride and having to deal with a heavily sedated person.

I've had a number of medical tests which require sedation, and so I'm somewhat familiar with what it's like to be sedated.  Unfortunately, this has apparently caused me to overestimate my ability to revert back into a normally-functioning person afterwards.  Additionally, when I am sedated, I revert to a bossy, childlike state.  Case in point: when it was time for me to leave, I was convinced that I was in perfectly sound mind.  I refused to let the nurse put me in a wheelchair and when she handed me the report from the endoscopy I read over it imperiously and then promptly forgot what it said.

In the car, I read the report again, out-loud, which made me aware of David's presence.  I felt overcome with a rush of gratitude for his friendship which manifested itself in a conviction that I needed to feed him cupcakes.  I'm fairly certain I asked him multiple times if he had eaten any of them and if they'd been any good.  He replied that he had eaten one and assured me that he'd enjoyed it a lot.  It then dawned on me that I had not eaten since the night before and that I was hungry, so I sent the follow text messages to my roommate, Kevin:

"Done now supergroggy and hungry want to go home!!!!  Want to some sushi.  Please for some."
"Kevin I want ccoclate mooses I am hangru"

I also remembered that I hadn't given my dog, Ray, a proper-length walk that morning.  The enormous heap of guilt I felt upon realizing this prompted the following text:

"And milkkshakes alsoooo or also there were cupcakes can ray go out please can we give him out for walks now because it wasn't much for him during morning time and I FEEl so BAD for himm please help mje today if yu can pleasdr i neeyd help"

And another rush of gratitude resulted in:
"we are on bridge still and david is hre and I love David"

The next thing I remember was driving up a street near my parents house, where in an unlikely turn of events, I spotted my mom walking down the street.  I somehow convinced David that it was of the utmost importance for him to park the car and go running after her in the rain.  I then insisted that we get sushi.  David was dubious that I was in a condition to do so, but my clamoring overpowered his doubts. 

It was still raining when we got out of the car to get into the restaurant.  David pulled out a raincoat and hat for me to wear and I became belligerent.  It seemed far too much trouble to put them on, especially over my backpack.  I was convinced I would be able to study while we waited for our food, and so I insisted upon bringing my backpack full of textbooks with me.  I settled for wearing the hat and draping the coat over it so I looked like some type of misguided child whose parents had dressed her as a hobo for Halloween.

At the restaurant, I continued to be petulant, complaining that our food was not arriving fast enough and that David hadn't eaten any more cupcakes.  When the bill came, I made a grab for it and stared at it for many minutes, trying to figure out my share, which was difficult to do, since I kept forgetting what numbers were and what you did with them.

After we left the restaurant, I declared that I was tired and should probably go home, although I said I doubted I would sleep, as I had a lot of work to left to do that day.  David parked the car and accompanied me into my house, where I introduced him to my roommate several times.  After more protestations, David managed to get me to go to bed (where I promptly fell asleep), but not before I tried to feed him another cupcake.

Tuesday, November 16, 2010


I'm uncomfortable writing this.  My first post.  My brand new blog.  My first real blog. 

A long time ago, I took against the word "blog" for some reason, probably because it's a pretty stupid sounding word.  This grudge abated somewhat when I was dating a professional blogger, but some unease still remains.

I've done some unofficial blogging on various social networking sites, but never anything public.  I tend to be a fairly private person, especially where my health is concerned.  Unfortunately, this tendency also corresponds with a repression of my feelings or not talking about my health with my friends, especially at times when it is most important to open up.  I aim to correct that.

I also want this to be a voice of rebellion, a place to spit in the face of my disease.  I want there to be evidence that my life is more interesting and meaningful than endless doctors appointments, struggles against insurance, and tests.  I want to remind myself of the reasons to keep fighting for a proper diagnosis and treatment.  I want to express my appreciation for the small things in life that bring me joy and the love I feel for the people around me.  I want to raise awareness about digestive tract paralysis and metabolic disease.

I spent a disproportionate amount of time tinkering with the appearance of the blog, changing the fonts and layout, uploading images, and then deleting them.  This was not a concession to my perfectionism, merely procrastination of making my first post.  My feelings are that the first post should set the tone.  Should it trend towards the abstract, containing analyzations and essays?  Or should the posts be more personal, a record of my emotions?  Ideally, I'd like it to be somewhere in between.  My intention is not only to document my struggle with a chronic illness, but to also discuss the issues that surround it, including body image, ableism, friendship, sexuality, and societal perceptions of disability.   My hope is that by giving a structured voice to my thoughts, I will be able to better express myself to others and to better understand myself.  My body may be broken, but my spirit is made of much stronger stuff.