Thursday, April 30, 2009

EosinoWhat? No thanks I had a big lunch.

So the week has come and gone, and honestly I feel I have just as many answers as I had the last time we all convened at this URL. Two tests, a few conversations with doctors, a couple of appointments established, and no closer to any sort of truth then I was before the tests.

The scope:
You would think after all these years of going to doctors and making appointments I would give priority to actually noticing the time a receptionist set aside for me. However being the bon vivant (excuse my French) I am I chose to just rely on my lesion addled brain. Bad Idea. Up until the day before the scope, I went on believing that I was due in at 7am. Imagine my chagrin when I read the paper work and realized that the appt. was actually at 3:30pm. The MRI a few days later was at 7am.

“ No big deal” you say, “it gives you a couple of extra hours to chill with the kids.” I suppose on one hand you'd be right, but on the other hand you had better have a sandwich because this beyond thin bald guy had to go the whole day without water or food. Needless to say I was a right bastard by the time I checked in at the scoping facility. My head was pounding, my stomach was growling, my mouth was dry, and oddly enough I just wasn't looking forward to the procedure. After a short wait in an overcrowded waiting room I was checked in and ushered back into the medical facility. They pulled the curtain, handed me a plastic bag and told me to strip down. It was time for that ever loving hospital gown.

Let me go on a bit of a rant here.....(strange, I know) those hospital gowns...
Look I have been in and out of hospitals, stomached lots of procedures, and even taken a few unwanted "joy rides" in ambulances. My medical knowhow and the ability to navigate my way through any of the above mentioned scenarios has grown greatly for all of those experiences. Still with all of this “knowledge” I have yet to learn how to affix these damned hospital gowns. Do I put it on with the opening to the front or to the back? Do I tie the right side to the left side or the left side to the right? How am I supposed to reach my own back and tie the gown myself? I'm not double jointed here people, contrary to popular belief, I am just your average bald guy with MS. I swear I went to college. I even graduated pretty high in my class. Still, even with a fancy degree, these thin cotton shammy's confound me every time I step behind the drawn curtain. Every facility has a different take on where the "opening" should be, and enviably I end up walking out with some part of my anatomy waving. Great. This is ridiculous. How has this become the height of my anxiety, particularly when I know there is a throat camera with my name on it?

Anyway, after wrestling with the gown I opened up the curtain and waited for the nurse to come hook me up to all the contraptions that I needed to be hooked up to. I hoped she was also going to hook me up to a hoagie, but I wasn't holding out much hope. (An aside: for those of you not from the Great American Northeast and more specifically the Philadelphia area, a “Hoagie” is a large sandwich that is served by any self-respecting deli. Many people outside of the greater Philadelphia area would refer to such a sandwich as a Sub. If you come to Philly and ask for a Sub you will be promptly directed to the Delaware River. Not because there is a submersible ship there, but because you should jump in. I can get into the finer points of sandwich making later, but know there are differences, fundamental differences between a hoagie and a sub.) So I got my O2 on and a nice, warm blanket before the anesthesiologist made her way over to prep me for my drug intake.

Another rant ….(yeah, two in one post, wow) Do all anesthesiologist look like they have been dipping into their own stash? I have run into a few of these mavens of ether and I have always felt that there might be a little something going on that I am not aware of, and this woman was no exception. She was beyond pleasant. Pleasant in a way "normal" people (who live in Philadelphia) aren't. In fact, I’m not sure if that very thin face ever dropped that far away, spooky kinda smile. But what I am sure of is this: I never, not once, saw her blink.

I’m not kidding, not one pasty second to re-moisturize those gray globes hanging rigid in her skull. They just stared. I began to get the feeling that her eyes were somehow in control. The rest of the face was telling me, “I’m alright now, but I’m wound a little too tight, make sure you are not in the way when I ‘unwind’.” It was just like that 8 hour Jesus movie that you see every Easter. Jesus never blinks. In 8 hours the poor guy never blinks. After 33 years of that I would be crawling up on that cross too. All of this and no drugs had been introduced yet. “We’re gonna need a lot a CC’s of something stat!”

Where was I? Right, anesthesiologist. So, she hooked me up to an IV and told me we would be rolling into the procedure room in just a moment (She motioned with her eyes). At that the fire alarm went off. Nurses rushed around shutting doors and saying, “I think this is just a drill.” Because of my line of work, I am pretty well versed in fire safety and regulation, and I understood the closing of doors. Furthermore I understood the staff’s hope of a drill. However, I did not feel comfortable with the crux of the sentence being “I think” and no one seemed to be all that interested in looking into the viability of the “Drill Theory”. The anesthesiologist assured me that they would be wheeling me in a moment, meanwhile the fire “drill” (or impending doom, whichever.) kept rolling along. I waited patiently for a few minutes when I heard the phone ring. A nurse said, “Oh it is a drill, great,” letting out a sigh of relief, “Thanks for the call.” This, of course, only led me to wonder about their fire procedure, the staff’s readiness, and the facilities heads up as to when a drill will be conducted. Although I didn’t have much time to really ponder this quandary as “blinky” the anesthesiologist wheeled me into the procedure room.

In the room I met a few new members of “Team Scope 2009” and the GI doctor that had apparently informed the crew as to my profession (see last post). A few pleasantries were shared, a quick rundown of the procedure, and the latent discovery that one of my nurses really really likes the band Styx. (Incidentally, Styx will be performing on one of my stages this summer, which means that she had found out where I worked and then looked at our schedule. It seemed kinda intense to me, but I guess this is just something I’ll never get used to. Also, I really dislike Styx, but that’s another discussion for another time, perhaps when we get together to talk about Hoagies.) At this I thought I heard Jesus, but it was just the lidless wonder behind me informing me that the cocktail had just begun and I should be feeling a little sleepy. At that I got real tingly and said, “oh yeah, I feel it.”

The next thing I remember I was being patted on the side and told to wake up. I opened my eyes to see one of the nurses and my wife coaxing me back to consciousness. (Actually I saw two nurses and two wives. Common with my MS and I am sure it is common after being drugged into unconsciousness.) The nurse asked if I was alright, to which I sleepily responded, “I had a dream and you were there and you and you.” She didn’t crack a smile and told my wife that, “He is still groggy.” My wife told her, “No, he’s always like that.” I smiled in a blissful assent. Once I was a little more “with it” the doctor came over to deliver the results. He said while there was a lot of evidence for acid reflux, a callus at the base of my esophagus, and some evidence of gastroenteritis, he didn’t see much else. No webs in my throat, no ulcer. He told me he took a biopsy to check for one other problem that could be the root of my discomfort, but for now to just stay on the Prilosec. He gave me smile, a pat on my shoulder and told me to make an appointment.

Good news, right? Well, most would say so. The problems he found aren’t too crazy and can totally be corrected. That is great, but I also have to say that I was deeply disappointed with these revelations. I am no masochist; I am not looking for more problems then I already have. I am not tied to some great romantic notion of the hopelessly broken boy who perseveres despite the desperate circumstances around him. I am just looking for answers. I have had some sort of swallowing problem for most of my life. There is no doubt that it has ensured that I lose weight regularly, and very rarely gain it. Eating is a utilitarian process in my life, very rarely done with any pleasure. Not that I don’t like the taste or enjoy well prepared food, but it is always like tripping through a mine field with every swallow. I chew everything to oblivion before it makes its way to my gut, a process that makes me the last one at the table generally with cold food.

I had such hope that this doctor was going to see something and say, “ah ha, this is your problem, and here is how we fix it. You will be overweight in a month.” I suppose it is kind of sick to hope for medical conditions. I am just tired of feeling like I have somehow, when I was a boy, created this issue in my head, and have just perpetuated it for the last 20 years or so. I suppose I had quietly convinced myself that, April 14th, was going to find me the same relief I got when I was diagnosed with MS. I realize I do sound like a sort of Munchhausenian imposter finding some happiness in illness, but this really isn’t the case. Of course being diagnosed with MS, was its own brand of hell, but there was a certain level of liberation when I was told that my demons had a name: Multiple Sclerosis. I suppose I had hoped that the scope would just supply me with another name.



We now interrupt this blog post for a special report:


So the above couple of paragraphs were actually written last Friday. On Saturday of that week, while out on my front porch enjoying the summer like conditions for the first time this year, trying to prohibit my sons from chewing on the sidewalk chalk that they were graffiting my walls with, the friendly neighborhood mail carrier made his way to my stoop with a pile of mail. In said pile of mail, besides the gas bill, the electric bill, and the Baby Land’s End catalog (why we get this is far outside of my realm of comprehension, furthermore why such a catalog even exists is even a greater mystery) was a letter from my Gastrointestinal doctor. I assumed it was some sort of bill. A dispute of what they felt they were owed and what the insurance company felt was not their responsibility. Imagine my surprise when I opened the beige envelope to find the results of my recent biopsy. Take a look….



Honestly I almost stopped reading there. This was all the info that I had gotten just after the procedure. It seemed this was some sort of formality from the office, a way to cover their posterior of certain liabilities, and another reason to kill a tree. I took a quick look at the rest of the letter. Realizing it was short, and figuring my kids couldn’t consume a whole piece of chalk before I got to the end, I kept reading. It was the next paragraph that really gave me the goods.





Eosinophilic Esophagitis

(http://en.wikipedia.org/wiki/Eosinophilic_esophagitis)

This was the condition that the doctor had referenced numerous times in the office all those weeks ago, and it was the same condition that he told me there were no signs of after the scope. Talk about mixed signals, I feel like High School Freshman on Prom Night. ( I have no idea what that means, but it sounded like something that might be confused)

Well, I guess I got my wish, and even an excited congratulation from my wife (thanks, Honey). Now I have some sort of diagnosis, a name to the face if you will, and it is on ward to “how do we treat it”? How do we correct it? The little bit of research I have done seems to point toward a solvable problem. I really really really hope that this is the case. Man what a roller coaster.


We now return you to your regularly scheduled blog post.

I’m not going to get into the MRI here. There is not much to say. Although I’m sure that if I got rolling I could fill three or four pages about it, but I’m feeling benevolent today. I won’t subject you to that. After all, we are all champs of the whirling magnetic dervish, and we are aware of the non-event it normally turns out to be. The long and short of it is, I got to see the new fancy facility at my old fancy hospital. It was very posh. I felt like I should have been offered a cappuccino or had someone place cucumbers on my eyes; lots of leather and steely silence. At this new fancy facility they have new fancy MRI machines. More powerful they say. (“All the better to see you with.” The wolf smiled to the little girl.) It seemed like a bonus, but somehow the stronger machines prolong the scans. It still turned out to be about the same amount of time. I took a little nap, listened to the almost musical machine gunning sounds around my head, and after 2 and a half hours or so I made my way home. We won’t have any results till my doctor’s visit in June. That’s when all the heavy lifting will be done concerning my medications and what not.

So that’s the latest here in Bald Ben world.

How are you?

4 comments:

Heather said...

I'm doing great, thanks for asking. Actually, I choked on my Icy Tea twice during that blog post. "High School Freshman on Prom Night" and "Although I’m sure that if I got rolling I could fill three or four pages about it, but I’m feeling benevolent today" were the two bits that got me going.

Anyway, I am glad that you have some answers. I don't have to deal with a chronic issue of MS, but I know how exasperating it can be to hope for an answer or diagnosis and not get one and then think you are nuts for wanting a test to show something wrong. Did that make sense?

Is it bad that I am jealous of your conscious sedation for your scope?

BRAINCHEESE said...

I don't even know where to begin in leaving a comment...I'm still laughing too violently at your follies!

When I was in nursing school, I once knew an anesthesiologist who clipped his nails during surgeries and studied musical flash cards. I remember thinking, "gee, I wonder if he ever accidentally flings a flying nail specimen into an open body cavity?" I have no recollection if he blinked or not...

pUNKrOCKfairy said...

Anestesiologists come from weird eggs it seems. In the same practice we have one that wears jackets covered in cat hair into the OR and one that spends the whole procedure wiping every surface within his reach down with 1" square alcohol swabs. And lots of patients say something like, "Make sure I'm REALLY out and that I STAY OUT!," to which only anesthesiologists think it's ok to respond with, "You should me more concerned with whether or not I can wake you up after. Heh, heh."

Creeps, the lot of 'em.

Jennifer said...

I just had to tell you that I love your blog! I laughed until I cried reading some of this. My son was diagnosed with EE when he was a year old (he is now 4) so I can relate to that part of your blog. Actually that is how I found myself here reading it. I was making a poster for the local Eos Support Group in Arizona and wanted to use eo-sin-o-what as the header. I wanted to make sure I was not ripping it of from someone.
Thank You for making my day a little brighter and please know that you and your family will be in my prayers.