Did you know Montel Willams has that?

Is this thing on?

2009-08-13T09:59:00.001-07:00

Testing, testing 1,2,3. Can you hear me? Hello? Anybody out there?.....

Well, whatever the case I’m still here. Yes this bemused bastion of bald fancy is still alive and kicking. Please hold the applause, I haven't said anything yet. Actually I don't plan to say all that much, right now that is. Hmm, did I just hear more applause? Odd.

Anyway, it has been a while, far too long as a matter of fact. For this I do apologize. As they say, "it was me, not you". The last few months have found me embroiled in a very interesting time here at my place of employment. It was a small but not unfounded labor dispute. Something I am not going to get into here, but know that it is all been worked through and everyone is better for the experience, particularly this MS laden bald guy. (It was actually a very fortuitous career strengthener. Now if it could only do that for my hair line....)

Nonetheless, this is just a quick note to tell anyone who might still be around, check back in the next week or so. I will have a usual sized post (read: needlessly long and side splittingly funny) very soon. We shall touch upon a few open topics like:

What ever happened with the Eosinophilic Esophagitis?
What did the last MRI say?
Did you switch medications?
How frequently do you shave your head?
If I am traveling in a car at the speed of light and I turn my headlights on will I see anything?

We shall have all the answers to these questions and oh so much more. As a matter of fact I would imagine that after I write, those of you who chose to read will have lots more questions to ask. I can be vague and confusing most days. Just ask my wife.
Again, I am sorry that I haven't written anything in such a long while. I have been thinking about it, but felt that I needed something to actually write about plus the time to write it. Strangely enough a hairless guy can get pretty beat after the commute to and from work, spending long hours at said institution of employment, and then trying to optimize whatever time he can with his family before said schedule is repeated. On top of all this throw in a healthy (healthy, get it. Keep reading you’ll see the non sequitur.) dose of auto immune disease and you get one tired son of a gun, funny how that works. Trying to concentrate on the verbal diarrhea I call posts was almost an impossibility.

I hope you all understand, and I hope there are a few of you left out there to read. I still have a few things rolling around under this hairless dome, and I plan to treat you all to a sampling just as soon as I can pry it out.

See you in a few days.

EosinoWhat? No thanks I had a big lunch.

2009-04-30T12:36:00.000-07:00

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?

What do you get a girl three years later? Leather and Glass

2009-04-22T13:29:00.000-07:00

Three years ago today the skies opened up and unleashed a torrent of rain like I had never seen before. The wind lashed at the trees, the rivers began to overflow, and small dogs were seen to put on those floaty things "just in case". There was no time to build an ark, and besides I don't think even good ol' Noah had enough cubits for this one. I had to be tough, like a mail carrier, I couldn't let a little water deture me. I had to get to the church.

You see I had a date. We had set it up a few weeks before. We had promised to meet at the place of worship down the street from my house. Turns out I met a pretty nice girl. She thought I was alright and we started hanging out quite a bit. One day we decided we didn't want the hanging out to end. So we called a priest, filled some paperwork at city hall, and asked a few of our friends to swing by.

This was the front of the invite

On April 22nd 2006 Angela and I said I do. This was part of the inside

I wish I had a lot of great insight or deep things to say about the last three years or even marriage in general. Truth is I am tired. I'm not thinking all that clear. We put together a CD of songs as our wedding favor (cover is above) on the inside cover I wrote a short story about how Angela and I had come to be. It was really the first time I had written something and put it out for the world to see. I am glad it was about us. So with out a lot of extra words here is what I wrote three years ago.

How Could I ever have known that my future depended on Bruce Springsteen?!

The summer of 2003 found an auspicious pair enrolled in a sort of Rock and Roll boot camp. We both, Angela and I, were slaving away at a series of stadium concerts that August, when the boss himself came down from on high to divinely intervene.

While digging up a new walkie talkie battery, I over heard a girl softly singing a Gillian Welch song. My interest was piqued and we soon became friends. (Friends only if you consider the fact that Angela was making up mean drawings of me being below a dirty sock, but that’s another story) As the summer and stadium work progressed, we found a tired solace listening to Neko Case in my car, as I drove us to our respective homes at the suggestion of Angela’s sister Amy.

Mr. Springsteen made a triumphant return to Philadelphia at the end of that summer and Angela and I were about to drop, but God made Rock and Roll and I guess we were its servants. So we kept pushing through. The work was long and the shows were “Born to Run”. Well, I did the rockin’, she did the laughing.

The stadium shows ended and work carried on for me. Angela and I stayed in touch and I thought of her often. As the summer drew to a close I found myself at a concert for Radiohead and Angela was going to be there. We spoke briefly and during the show I went out to find her. Unfortunately 26,000 other people liked the band as well, and none of them seemed to know who or where Angela was. Giving up, I wandered down toward the front to catch a bit of the show. When by accident, fate, or by the hand of the Boss himself, I ran head long into her as the band broke into “Nice Dream”. I should have kissed her right there. It was one of those movie moments, except I didn’t need a boom box over my head. I had the damn band playing for me right there. To say that I realized at that moment we would be here today would be a lie. However, if there was just one moment, that might have been it. My life was changed. There was no letting this one go. It wasn’t too long after that we became inseparable. These songs reflect a lot of moments in our relationship. While not all of them are love songs they take Angela and I back into out relationship. From discovering new music, or uncovering music that had eluded us over the years, they hold special significance for us. I told Angela once that we could never split up: we would lose so much great music that binds us together

We hope you enjoy these songs as much as we have.

-----------------------------------------------------------------------------------------------

The simple truth is I love you. Thank you for being my wife and my friend. Thank you for being who are and all the support that you give me. Here's to three more good ones.

Ain't it just like the present, to keep showing up like this.....

2009-04-09T14:28:00.001-07:00

I had no idea that the Montel/Oprah show was going to be such a flash point for people. Honestly I think it might shed some light on something for us: far too many of us watch far too much television or that far too many of us put far too much faith in the old boob tube. Whatever the case, I’m glad that there were such strong feelings about it. I never would have guessed that the show would actually help increased the readership for the good ‘ol blog here. Although, I suppose that is the end goal. Spread the name of Bald Ben as far and wide as we can, then on to world domination. Honestly, the attention was all very nice, it was great to see you all, and I hope you enjoyed the rantings and ravings of a mad bald guy. Normally I just tend to scare people away. My mouth often has that effect. Nevertheless, the last post showed up over at Carnival of Bloggers (thanks Lisa/linked on the right) and even garnered me a lovely award (see below).

This lovely piece of blogger ephemera has been sent to me by Tracy Ramblings, a really fantastic bloggers I like to count as a friend (albeit cyber-friend, but whatever, I would jump in front of a cyber bus for her. I bet she would do the same for me.) Tracy writes over at “Living Life With Sarcasm, Kids, and MS" (linked on the right). She’s a great writer, has a lot of well pointed insight and if you’re not familiar you should be. Stop wasting your time here and go over there. ......Well, hold on, let’s not be so hasty. Relax, here’s some tickets to the buffet. I have a few more things to say and then feel free to mingle.

Anyway, if you have seen Tracy’s blog, or her comments left here, you will recognize that I am actually removing the “S” tacked on her profile name that signifies ownership of said ramblings. As in these are thoughts or musings of Tracy. Well, I say grammar be damned. (I am sure my disdain for grammar is evident from my writing, but I digress) I like to remove the S thereby giving Tracy a first and a last name, some sort of persona, a persona born of the spirit of so many purveyors of punk rock and independent musicians that have informed my life. i.e. Joey Ramone, Johnny Rotten, Lux Interior, etc.

Tracy’s last name of course is not Ramblings, however it is here. Tracy Ramblings may be someone I never meet in real life, and this is just an attempt at personalizing the dots and blips that stream from my computer screen. It’s human nature, I suppose, my nature at the very least. I like nick names, after all. I am “Bald” Ben, I dubbed one of my college roommates “Tex” after I made the very astute observation that he was from the state of Texas, I will often refer to my children as “Bongo“ and “The Fonz”, and I even call my wife “Honey”. See, nicknames.
Whatever the case Tracy Ramblings is who you are going to be here, I hope you don’t mind. Anyway, thanks for the award. It is much appreciated. I think I have a medal or a cookie around here for you somewhere. Although, I think the medal is bent and the cookie is probably stale. I’ll keep working on it.

On to the issues at hand today. Yeah, we are going to have to move on from Montel, lovelty awards, and even cow tipping and actually talk about MS. There are a few new realities a’knocking on the hairless dome, and I not only need to get them off my chest, I also am interested in any thoughts out there.

First: stomach problems.

Are you serious? Stomach who the hell asked you to join this party? I’ve got plenty of guests already and you can kindly show yourself to the door. Oh, you already found the bar. Great.

The thing is I’ve been getting some crazy pains in the region of the belly for the last few weeks, and it just doesn’t seem like the sorta thing I should ignore. A guy gets hungry from time to time, you know, and often the body will send "pangs" to notify you of the impending digestion of ones own stomach, however while getting these nice reminders to eat one day I began to get a much more sever pain. Sorta like the little fish getting devoured by the big fish. Then that big fish swam into the hours of my slumber and decided that sleeping was not a needed function. As of late big fish just sorta wades around whenever he feels like it. I think he might be a barricuda.

Figured it was time to go see the old GP. Before we get into all that though, allow me to beat you to the bunch: No, I do not have to go to the bathroom. Common question when you have stomach pains I have found. No, the pipes seem to be working fine. The truth is I’m 144lbs soaking wet, the last thing I need is something stopping me from wanting to eat. It could be dangerous.

So I went and saw my GP. He’s a bit strange, honestly, but seems to be a good doctor, just a bit off (It’s okay to say he is strange because remember, it takes one to know one.) After a few minutes of pushing on my stomach and a long conversation about when it is a good time to learn a foreign language, he seems convinced that I have a stomach ulcer. I’m not entirely sure if learning Italian in my late teens had anything to do with the diagnosis, but at any rate if you direct your attention to the right you will notice a new addition to the medication chart: Prilosec. It seems to be calming things down a bit, I’ve been able to sleep and whatnot, but it is only a temporary fix. GP has also referred me to a Gastro-intestinal guy.

The strange GP gave me a practice to contact and I was on my way to the nearest internet connection to take a look. As I have stated previously the internet is a wonderful place. One is able to locate just about anything one hopes to discover. Have a theory? I’ll bet there is some evidence to back it up somewhere out here on this inter-web. Take a look: Hollow Earth(http://www.ourhollowearth.com/), Cuban Alien Conspiracy (http://weeklyworldnews.com/alien-alert/7419/fidel-castro-meets-the-alien/), or this (http://www.flickr.com/photos/tlong/2306499278/).

Anyway the information I uncovered about the recommended practice was no where near as life altering but it was all the info I needed. As soon as I saw the founding doctors name was Guttman I was sold. It was so perfect and ridiculous that I knew I was home. I made my appointment, but to my dismay Dr. Guttman was all booked up. Which then led me to wonder if he really exists or is just some sorta of mascot like the pilsbarry doughboy or something. I begrudgingly scheduled with another in the practice and went on my way.

Now, like many of you, I have seen my fair share of doctors. I don’t trust ‘em, like many people don’t trust lawyers. So I always go in with my fair share of dubiousness and try to do my best to get through the doctor speak. Nevertheless, this guy seemed alright and was surprisingly interested in my problem, leaving me to question if perhaps I am just jaded from a few bad experiences. (Me jaded?) Anyway, we spoke at great length about the current symptoms, MS, and even into very old swallowing problems that have persisted through out much of my life. It was actually kind of refreshing. I felt like I might be getting somewhere.

He agreed that I might have an ulcer, but he felt that there might be some other forces at work as well. He kept referencing a condition that he said has only recently begun to be diagnosed. Leave it to me to break medical ground. Woohoo, Ben…. And as medical words go the name of this condition is a bit of a doozie; lots and lots of syllables. Enough syllables that, despite his incessant recitation of its name, it went in one side of my bald head and out the other. The doctor said this word so often that I began to believe that he was on some sort of retainer from the disease. Perhaps he was getting a kick back every time he uttered the word. Wish I could get a kick back every time I swallowed. Having diseases and conditions just doesn’t pay. Whatever the case, I did garner a story about a series of rings or webs growing in the throat making it difficult to swallow. It thankfully is treatable. Unfortunately I will have to have a scope of my upper gastric system in order to pin point the problem.

A scope seems a bit daunting, after all they are going to shove a robotic camera down my throat, if I wasn’t stressed out before I think it is safe to assume that the stress level is rising, if only a touch. To be on the safe side the doctor had me jump up on the table for a quick exam. It seemed reasonable to me, so up on the crinkly paper I went. While I’ve had some good doctors over the years, it seems to me that I have had to build up a bit of a rapport before someone was this interested in listening, I was a bit perplexed. So while on the table the doctor got to talking about my “work”, where it was I worked, what I did there. These seem like reasonable questions from a doctor, however I know better, and like a watermelon being hurled from the pitchers mound I saw the next question coming down the pipe. “Can you get me backstage passes?”

Those of you who read my invectives upon the immune system will know that I work in the entertainment field and produce rock and comedy concerts. I am “backstage” every weekend at some sort of “happening”. I am the technical guy, the guy who makes sure that the lights and sound and the whatnot are erected to the shows specifications, and that the show’s specifications are not putting our building as well as out patrons in any danger. Very rarely do I have interest in the actual act on stage. We stick to pretty mainstream music here, enticing a pretty mainstream clientele. While music is terribly important in my life, I am not that interested in mainstream music. That being said, I am interested in people coming to see out shows, I am interested in the paycheck they give me, my family eating food, and the health care plan it provides us. Furthermore it gives me something to throw all my vitriol toward. It is true and not unfamiliar to most of you who have been reading that I am not particularly fond of this job. It could be worse I suppose, and I have gone into it in greater detail in other posts. Nevertheless, I have never ever been out right asked by a doctor, someone who only just met me, for something of this caliber.

I would imagine most of you would realize that a pass at any show isn’t something that is easily obtained. Furthermore, it has become apparent to me that many people seem to think that backstage is some sort of party, a large room where we all hang out eating food, drinking beers, playing guitar, hearing war stories from the artist. Allow me to burst your bubble: It isn’t. Actually it is a very mundane place with a lot of shut doors and security guards walking up and down the halls. This aside people still want to get back there. Anyway, as per usual I am way of track here.

So the doctor asks me if this is a possibility. I gave him my usual pat answer which is, “You can always ask.” Which if you read between the lines means no. He persisted a bit, but then quickly stopped, perhaps he was sensing my dismay over his ardor, and he quickly said, “But we have to get you better first.” I agreed.

I can already hear the comments from the blog peanut gallery: “Get rid of this guy” and the like, which of course was my first instinct as well. However, I figure he is working in a well respected office and I trust that he passed medical school. He seems to understand what he is doing and actually gave me some thoughts on possible reasons for the pain in my stomach and swallowing problems, which is far more than many have done in the last 31 years. That counts for something. Furthermore as we get further along in this processes I can always hold the idea of passes over his head like a carrot to a rabbit on a track. My job has to be good for something.

So that is issue one. May have something to do with MS it may not. We are not sure yet. April 14th is scope day. I’ll need a ride. They tell me they are going to put me to sleep. Not in the: I have a sick animal who needs a peaceful way out sorta thing, but the: here are some drugs so you don’t notice the robotic camera sliding down your throat sorta way.

Issue two is a bit more complex. Dear God, did he say MORE complex? He just wrote 4 pages on almost absolutely nothing. This is like an MS related episode of Seinfeld. “What is the deal with MS?” (Read with a Seinfeldian sort of feel. It’s much funnier)
Settle down, settle down, I’ll try to be brief.

“No Empire, No More” was one of the first MS blogs I read. The author, pUNKrOCKfairy, was one of the first to comment here and I have been a devoted reader ever since. (Like all the other blogs I have mentioned she is also linked on the right.) She is currently in the middle of a Fingolimod trial, and has updated her blog about her experiences. Those posts got the gears under my bald scalp started a’turning.

Here I saw someone really taking their disease on. All of these blogs are about as close to interaction with the real life afflicted I come, and all the blogs have become an amazing outlet for me. While many of you have written thoughts and feelings that I have reflected upon and taken to heart, Punkrockfairy, unknowingly has actually helped light a fire under this bald guy’s posterior. I realized that I have been a passive observer in this battle for far too long and before I am sitting in a wheelchair saying, “Oh I should have….” It’s time to take a few cuts with the ol’ baseball bat.

So last week I sauntered (Well sauntered is a bit much, for one to saunter I would imagine they need complete control over their legs. Therefore, I did my best imitation.) into my Neurologists office and told him that it was time to move on from Copaxone. There is no apparent flare currently, but I can say that I just don’t feel well. I’m not how or who I am supposed to be. So it is time to move on.

It seemed that was all he needed to hear. He lit up and was ready to show me some options. This is where I am hoping for any thoughts on the situation. These are the options he presented me with:

Tysabri:

http://en.wikipedia.org/wiki/Tysabri

Alemtuzimab: (trial)

http://www.neurologyreviews.com/07sep/alemtuzumab.html
http://en.wikipedia.org/wiki/Alemtuzumab

Atacicept: (trial)

Sub-cu twice a week for 36 weeks.
http://en.wikipedia.org/wiki/Rituximab

First and most importantly I did let them know that it seemed that all of these drug names had been lifted out of an H.P. Lovecraft novel. It sounds as if they were dug up out of the bowels of hell themselves, much like this damned disease. Once I get past the probable Satan worship I am then left with the a few decisions. Tysabri is notoriously expensive, takes up a good chunk of time, and when I went in for the IVIG treatment last summer, there were a bunch of people having “ports” installed for Tysabri. Then of course there is that pesky risk of PML. Truthfully the PML is really the least of my worries. My insurance company is a far bigger fish to fry. Tysabri, however, is a very tempting option. The benefits seem to be something I can’t look away from.

On the other hand the trials come with their own positives. The relative absence of expense does not go unnoticed. As a matter of fact they pay me some nominal fee for my involvement. All my blood work, MRIs, doctor visits are totally taken care of throughout the trial. Furthermore I could be getting in on the ground floor of some really groundbreaking therapy. Yet as with all exciting ventures there is another side to the coin. All of the trials are double blind. So, there is a good chance I might be taking a placebo. Essential negating all of the “trying to better my health care”, and side effects are still to be determined. Despite this there is still a real draw in this direction.

So I am torn. What’s a guy who lost his hair at 16 years of age to do? Where does this same bald guy turn? I have done some research here on the internet, but the answers I get only lead to more questions. Sort of like a disease ridden episode of Lost. Nevertheless, I will be going in for an MRI next week, a few days after the scope. (It’s gonna be a banner week) then a follow up appointment to decide the next step. Regardless, it’s gonna be a long couple of weeks till I get this all worked out. I’ll be alright. I promise. How could I let you, my reading public down? So any thoughts, pep talks, or a secret antidote to MS is much appreciated.

Yeah, I know Montel Has that....

2009-03-17T13:45:00.000-07:00

My Mom called me today to tell that Oprah was having a special episode with none other than Mr. Montel Williams and his amazing incurable disease. I am sure my interest in Montel is evident as you tune into my blog here, however, Montel aside, I have a bit of a rule in my house, there are a bunch of rules in my house, but one of the most sacrosanct is: No Oprah.

I really can’t stand this lady. She seems to have all the answers. The words that slip from her perfectly botoxed lips, the gestures that issue from her well manicured hands, the opinions that inform every cloistered plebian in the lower 48 is enough to make this bald guy grow some hair. I wouldn’t be surprised to find out she is only a step away from being canonized by the Pope. I would imagine she wouldn’t be surprised either. I just find it hard to believe that a multi-billionaire knows how I should live. Yeah, I got your favorite things right here lady. No one mouth should have that much power. She all but bankrupted the meat industry. To be fair, though, I’m not sure she realized that her voice was that influential at the time. Yet I still hold a “beef” with her because of what I call the “Tom Cruise Incident”.

We are all aware of Mr. Cruise’s indiscretion a few years ago in announcing his love for Katie Holmes while he jumping on the couch like a mentally challenged pigmy. Ahh so very very cute. Hearts were melting across the country. Tom, “You had me at hello.” What’s the big deal you say, he spoke his heart, he let the world know his true feelings. It was romantic. Well, I’ll tell you the big deal, Tom then went on to jump all over another talk show host, (equally as insipid in my opinion) and let the world know that Post Partum depression was a fallacy. The whole thing seemed rather laughable to me, a moment for youtube and maybe a few super market rags, but nothing to get upset about. However, for whatever reason the world chose to listen, the medical community became upset, the First Lady of New Jersey made a PSA about the reality of Post Partum depression. Here is the rub: PSAs are paid for with tax payer money. Somehow this great comedy of errors spun the wheel of fate and pegged us the tax paying community to help pacify the tongue of one Tom Cruise. This is where I became incensed.

I do not live in New Jersey, but I know a few unfortunates who do, and I was angry for them and for the public at large who were now victims of a celebrity spouting at the mouth. Not that I believe a celebrity needs to keep opinions to themselves. Just because they are famous does not negate their opinion. They are famous, not God. Although, I suppose asking for a little responsibility, common sense, and maybe a touch of reality for the ridiculous things that come pouring out of their mouths is just too much.

Now what does this have to do with Oprah? Well, I imagine that we are all aware and quite honestly in awe of the power of Miss. Winfrey words. It is my humble opinion that she was the flash point of the “crazy” Tom Cruise persona, the jumping on the couch, know it all, larger than life celebrity. All that she had to do was come out and say, “Tom Cruise, while entitled to his opinion, has no idea what he is talking about.” She didn’t and for this I feel that Oprah is complicit in wasting the hard earned tax payer money of New Jersey. It was suddenly clear that the state government was being held hostage by TV personalities. Forcing the average citizens into a situation they never even knew they needed to worry about. I have to believe that New Jersey has better things to do with their tax money, I mean, have you ever been there? They definitely have better things to do with their tax money. Get’s a bald guys blood a boil, it does.

Truth is this movie "Magnolia", maybe one of my favorites, and I think Tom Cruise is pretty great in it. Although I can only think that his performance is so great because he is really just playing himself.

Anyway, today I had to lift the ban. God I wished I hadn’t.

I tuned in just in time to see Montel in tears, which was a regular occurrence through out the hour long love fest. However, these tears were not for the incurable disease coursing through his body or the unstoppable pain he has in his legs. No these tears were for her Highness Oprah herself. I suppose at some point in his career, Montel, was compared to the big O and he needed to thank her. It was all very touching, no vaulting from the couch, but touching nonetheless. The rest of the episode was taken up with Montel’s battle with depression, more tears, his work out routine, more tears, his love of fishing, more tears, oh and his new book. It was all a bit much.

Now please don’t think that I am coming down on the guy because he openly wept. There is nothing wrong with it, I am as guilty of it as anyone else. Sometimes things get a bit much and a guy has to let it out. The issue I had with the show was it all seemed staged for the cameras. If you ever saw Montel on his show he was famous for shedding a tear or two in response to the latest depravity he chose to parade on his stage. The tears, no matter how real, rang very hollow for me. I’m not sure what I had expected, there was little information for a person like myself, dealing with the inevitabilities of MS. The episode was far more for the average Oprah or Montel fan than for those of us out here fighting. I often felt like I was watching the “Last Temptation of Montel”. When he choked up as he told Dr. Oz he takes 26 pills a day and an injection, “365 days a year.” I was very close to flipping the channel. Perhaps it is the fact that I, like so many of you, deal with all of these things everyday. We don’t have TV shows, we don’t get applause. We quietly live our lives, wishing, praying that whatever it is we have today is what we still have tomorrow. We all know how terrifying this disease is, and I am sure it is just as horrid for Mr. Williams. However he has been fortunate enough to have carved out a very lucrative living, and bravo to him, however, he will never know what it is like to truly worry, not only about your disease, but how the disease is going to deplete you’re your savings. Depression, paranoia, guilt, fear, nervousness, not only stem from MS, but every time the mail is delivered these feelings are compounded by envelops from the health care companies.

I suppose all I am trying to say is that I am glad that Montel was able to go on Oprah today to speak about MS. Any awareness is a positive thing. Although I do wish that it was less about the trials and tribulations of Montel, and had been more informative about treatments or perhaps the future of treatment. At the very least the guy could have made the point that he couldn’t jump up and down on the couch because MS affects his legs and he would just fall off.

When I grow up, I'm going to go to Bovine University.

2009-02-26T14:30:00.000-08:00

It's been relatively quiet here for the brave bald wonder in this New Year. Truth be told I'm feeling a bit lethargic and add to that terribly horribly bored. It has very little to do with MS, though. I wish I could blame the brunt of my current malaise on the disease. A little, maybe, but I would be a liar if I used it as any sort of crutch. I suppose you could accuse the bitter bitter temperatures here in the great American North East, but that wouldn’t be fair either, although I do hate the cold. I would love to blame it on the resemblance between our current fiscal solvency and a first class ticket on the Titanic.

“Ahh, she’s a fine ship sir, unsinkable. No need for these life boats, and please pay no attention to that iceberg”.

As disheartening as it all is, it just wouldn’t be true.

Sadly no incurable disease, impermanence of weather, or easily avoidable iceberged economy has created my miasma of conscious. If we are being honest (which I hope we are, I mean we’re all friends here, right?) it is my place of employment that is bringing this generally upbeat bald guy down to his reasonably hairy knees.

The winter time is traditionally very slow for my line of work. Apparently high paid rock stars and comics don't like going outside when it's cold and snowy, leaving the touring to the warmer months (perhaps it has something to do with Buddy Holly's fateful February, or the fact that their non-foreclosed on mansions are kinda cozy this time of year. Whichever.) Leaving my summer jammed packed with every two bit act that you can imagine clawing their way to my stages. That, however, does very little for me now. (It does very little for me then as well. Most of the acts I have to deal with, while international celebrities and the like, give me a very clear picture of why our country and globe are in the situation that we are in. This is who the masses have chosen to look up to? But that is for a different discussion at a different time.) The reality that I am currently facing is down right bleak, at least in my office. Getting up in the morning has started to feel more like the Bataan Death March then the better part of my childhood dreams and wishes. Sitting here in this cubical, staring at this computer helping further the goals of the uber-rich has surprisingly grown very hollow.

I know, I know I shouldn't be complaining with the way things are in the streets right now. People are loosing their jobs left and right, financial institutions are busting at every turn of the newspaper page, kids are being gunned down on train platforms by cops, cats and dogs have begun to move in together, and NPR is still bugging me for a dollar every chance they get. You would think if anybody would understand it would be NPR, but I guess in all that proselytizing they forgot to actually read their own copy. Well, as my grandmother use to say, "Why buy the cow, when you can get the milk for free?" She had an odd way of talking about the radio.

It’s just that in my current situation, time has become a precious commodity.
Eight hours at my desk reading about the finer points of who did what and what did why on the internet, and the at least three hours commuting back and forth pushing my Ipod in a Mr. Scott/Star Trek reminiscence, “I’m given her all she’s got cap’tn” hardly seems worth it. I see my boys for about 40 minutes in the morning, and if I’m lucky, 30 minutes before they go to bed, which leaves me with no energy to actually give to my wife. Most evenings end up with me mindlessly staring at the television leveling inappropriate jokes at “The Biggest Loser” (Well sometimes they are inappropriate. Most of the time they are dead on.). This is no way to live.

I was never some sort of slave to my profession before MS. Before MS I was out working in photography and film, following my heart. It was only after I was diagnosed that this slave mentality began to win out. That heart on my sleeve began to beat a little slower and began to resemble an old greasy hamburger. In my own defense I was left with little choice, you see, this world showed up with benefits, and I’m not talking about lots of perks of the personal type that come with being employed at a hip swank place. No, I mean the benefit of some sort of medical coverage that my employer will supply me with in return for a pound of my flesh.

Everyday I force myself into this cubicalled slaughter house to appease an anarchistic immune system. Somehow I have become a hostage in my own body. I’m all for anarchy and all, but let’s take a step back here. By any means necessary? Hell, I’m not even sure what we’re fighting for anymore. The white flag is waving here buddy and I’m ready to talk treaty. I would think that we would be better allies then enemies. Let’s think about the pros and cons here. If the Israelis and the Palestinians have been able to read from the same torah, why can’t we?

But there are silver linings, the clouds do part from time to time, and I realize that you must revel in the joys that present themselves no matter how little. You know, making lemonade from lemon shaped rocks or scaring a cow so badly that it gives you chocolate milk instead of white. Come on Bald Ben that’s not nice, what has a cow ever done to you? Funny you should ask because it isn’t really what a cow has done to me, but in all honesty what I have done to a cow. Hey, hey, hey get your mind out of the gutter. It’s nothing like that. No, it’s actually far worse. It’s not that I have anything against a cow, I never really had a feeling about them one way or the other, but one night in boredom I found myself in well over my then hairy head.

To understand you have to get a better picture of where I come from. I have lived in Philadelphia for the past ten years, but I grew up about an hour from here in a town called Reading, PA. If you have played Monopoly you are well aware of us. Our illustrious past has been forever immortalized in the iconographic game as one of the four coveted railroad spaces.
Just for safety’s sake and your own personal knowledge it is pronounced "reding" as in “I read that book” not “Now you want me to read this book? No, I’m just gonna use it to level the table.”(which is what you hear most often in my hometown). I know, it’s spelled the same way but it has two totally different tenses, weird.

Anyway, Reading (see above pronunciation chart) is a moderate size city but on the edge of the “sticks”. A lot of farm land bounds in what was once was called “the outlet shopping capital of the world”. (I’m serious, I don’t think I ever owned a pair of jeans that didn’t have some odd stitching, a poorly tailored hem, or a third leg where the seat was suppose to be. It wasn’t embarrassing though, everybody shopped at the same places.) My first job was on a farm. Giving this now citified bald guy an over inflated sense of the country. A false notion that mending a fence, bailing hay, or breeding horses is some how part of my blood (but who am I kidding I can’t even breed sea monkeys.). That information is inconsequential, but the reason I tell you this is because if you ever find yourself in the situation where a bunch of your idiot friends think it would be funny to go out to one of these farms and “tip a cow” under no circumstances go with them. Turns out it is not near as “funny” as it would seem.

A quick biology lesson: Cow’s sleep standing up (this is one of the things I learned on the farm) and if you get a few able bodied young people you can push one of these slovenly slumbering bovine to the ground. Somewhere on some timeline, kids who have nothing better to do, figured out that this might be a rip snorter. I wouldn’t have necessarily thought it to be as such, as a matter of fact I had never really thought of it all, I just had nothing better to do that night. I suppose this is what my mother might call “running with the wrong crowd”. (I always assumed it had to do with smoking drugs or premarital sex. She never said anything about cows.)
So it was in the middle of a moon lit field, up to my ankles in mud, in the middle of the night when it dawned on me that I had made a big big mistake, however being the sort to make apples out of lemonade or whatever I figured I may as well finish what I started.

Long story short, we creep up to the unsuspecting napping animal, although creep is a relative term. Have you ever tried to “creep” with your Converse threatening to permanently disappear deep into the brackish earth that is sucking to your ankles like a Hoover on overdrive? In our best attempt, we quietly make it to the catatonic cow and with our skinny sixteen year old hands push with all our might this poor sedentary creature to the ground.

This is where things get interesting. You see in our adolescent minds the cow would wake up, right itself, moo in an annoyed cow fashion, (Which of course was some sort of cow swear word) shoot us a dirty look, and moove on (sorry). This would send us into hysterics as we jumped back into the car, put on our sunglasses, slap five, turn “Bad to the Bone” up to eleven and make off to our next great adventure. (George Thurogood was big in Reading.) The truth, sadly, was hardly that and was anything but laughable. When we finally made it back to the car there was no “next great adventure”. Most of us were changed in a way that we had never anticipated, and all of us smelled worse than any swamp rat that crawled from the primordial ooze.

You see when we knocked the cow over, which fell with surprisingly little force, it hit the ground, oh and it mooed. It seemed in that first second everything was panning out exactly as we had thought, but what we had never anticipated was at impact the cow also broke most of her ribs on the left side of her body. The physical truth suddenly came screaming into our pounding little hearts. That son of a bitch Newton was right: To every action there is an equal and opposite reaction and that reaction resulted in the cow evacuating her bowels all over the dumb bastard who was standing at the wrong end of a bad day. I have never truly bared witness to the actual personification of a phrase before, but this was literally “getting the shit scared out of you”.

We stood there stunned for a second. Which in my analysis was a reasonable thing to do, our world was just turned upside down. A defenseless animal lay writhing on the ground, the guy who had driven us there was unexpectedly doused in a dark viscous stew that hadn’t been pasteurized, and getting my GED in juvie seemed like a real possibility. Chaos ruled the moment. The next few moments are hazy to say the least, but as we turned to run physics kept getting in the way. The molasses of the wet pasture at our feet had regained the upper hand and deftly illustrated the properties of suction. One of us fell face first into the mud, I’m not gonna say who, others never saw their shoes again, and the muddy naked footprints back on the road lead me to believe that there are a few tube socks permanently interred in that field of horror.

Needless to say “Cow Tipping” is not a victimless crime. The poor animal probably had to be put down after our exploits and that car never smelled the same. So I moved to Philadelphia and put all that behind (err?...) me. At the very least I am glad I have that off my chest. There are very few pastures I pass by that I don’t think of the horrible night and the terrible thing that I had taken part in. I suppose it would serve me right if reincarnation is the way of the universe. If Karma exists I would come back as a cow, an American cow, not an Indian cow. Those animals are revered as Gods there; here I would just end up as food. Although, come to think of it, I do have MS. Karma? Son of a….

Anyway, the point I’m trying to get at here is my job, while totally cow free, (although there are a few people here I would like to “tip”) is bringing me down like a milk cow on a Saturday night in Amish country. I suppose I will abide, I always do. There isn’t much else I can do at this point. And to abide I must notice those perfect moments when the fates smile upon me. When the powers that be, allow this brow beaten bald man to actually remember that life is a pretty wonderful thing, even if those reasons I find aren’t exactly the way God had intended. Even say in the men’s bathroom.

It was an average day. One where I had already accomplished the twenty minutes of actual work I needed to do, and noticed my inbox was overstuffed with viral videos. I was in for a long afternoon, but nature called. First up, a trip to the men’s room. It was a quick one, just had to visit a urinal, and as I have explained before the bathrooms here are huge. I took a spot near the middle of the long row of porcelain containers and set to my work. Behind me stretched an equal number of stalls, as per usual many of them were occupied.

While I was finishing my “business” one of these stalls lit up with a cacophony worthy of my first car stereo i.e. tinny, overdriven, and a slight odor that I couldn’t quiet place. I quickly realized this 20 seconds of repeating, bland, muffled rap music was originating from someone’s cell phone who was utilizing a toilet behind me.

Now, contrary to what it seems, the bathroom stall is not a phone booth. I realize that any small enclosed box that often gets used as a bathroom may resemble what many of us remember as a phone booth. Just because most of these “booths” have gone the way of a dinosaur carrying a pager does not mean that all improvisations are welcome. I’m not sure what Emily Post has to say on the subject of cell phone etiquette, however, I have a feeling fielding a call while taking a squat just isn’t kosher. (Although, I have heard that LBJ had a phone installed in the White House bathroom for some “state business”.) Past the obvious sanitary concerns that might emanate from such an action, one is already in a vulnerable state. Why complicate the situation by putting a piece of electrical equipment to your face? Although, on this day I give this “gentleman” a pass, his actions no matter how uncouth have given this bald guy a smile.

The phone was quickly answered, and by the lack of the common courtesy of a “Hello” or a “What’s up” it was apparent that the caller ID had already informed the recipient of the person’s identity. As the phone clicked to life and the electrical pulses whirled above my hairless head, transporting a living voice into the walled fortress of flush I heard the six words that made me thank God for being alive at such an amazing time.

He answered the phone while perched on a porcelain throne doing what I would say is safe for us all to just assume, and like he couldn’t expel the words fast enough from his mouth he said, “Dude, you ain’t gonna believe this shit.”

…….

Dude, you ain’t gonna believe this shit, indeed.

Truth in Television Advertising

2009-02-21T07:50:00.000-08:00

I was watching a rerun of the "Family Guy" last night and they had this hilarious scene.

First let me apologize for poor video quality. Although I don't know why I am apologizing, I didn’t make it. All I did was plug a few key words into youtube and came up with this gem. I suppose, like me, someone else has found the humor in this clip and feeling the urge to share it, say more than what the nationally televised program already had at its disposal, they pulled out their video camera sans tripod or any other method of stabilization and treated us all to these few minutes of cartoon hilarity. That's dedication, people, and the process actually adds a new dimension to the clip.

It's like some sort of Post Modern found art piece. I went to college with people who might find some sort of artistic merit in this presentation. The giggle of the auteur at the end really sends it home. They didn't just present the clip, but also supplied their critique as well. The laugh signals approval, there by giving what the filmmaker was presenting credibility and credence.

Yes, it is true I went to school for art (photography and film to be exact) and I can polish a turd with the best of ‘em. But let’s get serious here, afterall it is a serious subject we are dealing with. I’ll cut out this high minded hyperbole and boil it down to its nuts....

M.S. = Monkey Scrotum.

There is a lot of truth there.....

P.S. I am also sorry if anyone found this clip offensive, “Family Guy” likes to push the envelope, and I am one to laugh at just such envelope pushing. If you are looking for political correctness I would point you in the direction of something bland and unopininated like melba toast.

Bone Marrow?

2009-01-30T08:56:00.001-08:00

A very quick word. My Dad called me this morning and told me they have cured MS. Yep, cured it. We are all in the clear, I'll see you at the wrap party......Ahh, Dad I love ya, and I know that you just want the best for me, but this planet you're living on just may not be inhabitable by humans.

I don't mean to be taking the mickey here with my Father. He has my utmost respect. He is, in my opinion, a great man. He has provided for his family working tirelessly in a business that he has built himself, helped raise three kids (of which I am the middle), and carved out a reasonably peaceful existence. He lives his life quite pragmatically, but the core of the man is one driven by dreams. And I don't mean work oriented goals or high ambitions to achieve greatness. I'm talking about the kind of dreams that lead one to spin tales of vampire hunting in the woods behind your house, telling my then elementary school aged sister that NASA was going to send children into space, (of which she then related to her teacher) or that my saintly grandmother was actually a raging alcoholic that liked to bounce beer cans off his head. None of this was true, of course (although, I have never been able to firmly discount the vampire stories) my father just enjoys the absurdity of life and sometimes he lets his brain out for a walk. If something strikes him funny he likes to relate it. (Incidentally this is a trait that has been passed on to yours truly, much to the dismay of my wife.)

My Dad loves his children almost to a fault. (Although I am finding out, you can never love them too much.) However it sometimes leads my Dad to, "fill in the myelin where there just ain’t none to be found". He wants his three kids to do well, be happy, and healthy. Even if some of this has to come at the expense of delusion. As has been previously discussed I'm not really living up to expectations on the healthy part, and this really hurts him.

He wants so desperately for me to be well. I am sure much of his paranoia comes from the fact that his Aunt went through MS in the dark ages of treatment and needless to say she didn’t fare so well. It took me a long time to convince him that my road was to be very different. Once that hope had been instilled, my father began his own “research” on MS. This isn't the first time Dad has called me with great news about the future of MS treatment, and this morning wasn’t much different.

As always I listened to his “great” news, tried to be cheery as possibly, but in the back of my mind translated it as Dad saying,” just want to let you know, we’re all pulling for you.” All of this is greatly appreciated but you know as well as I that any news about cures, treatments, etc. need to be taken with a grain of salt. Otherwise we would all be walking around like that Blue guy who was on Oprah and CNN.

Nevertheless, when I got to work this morning I plugged a few key words into Google and viola a little info that I never really expected. Not sure if anyone has seen this yet or if anyone has had any experience there in. However this one seems like there might be some promise. Let’s keep our fingers crossed becasue God knows it’s better than keeping our nerve endings crossed.

http://news.yahoo.com/s/nm/20090130/sc_nm/us_ms_stemcells_2

Thanks, Dad. I'm real glad you're looking out.

P.S. did I say quick? Sorry I really gotta work on that brevity thing.

The body from Spirit does slowly unwind until we are pure spirit at the end

2009-01-20T16:50:00.000-08:00

A quick note here on this day of history. I have a much longer post on other topics that I’ve been thinking about, but it isn’t quite done yet. I’ll be posting it later this week, I hope. Furthermore, I feel today is far too significant to let go without mention.

We are all aware we get a new president today. I am hopeful that he might be able to turn something’s around for us, but only time will tell. Truth be told I did not vote for him, nor did I vote for the other guy. I am a bit (by bit read totally and hopelessly) a cynic when it comes to politics. I don’t speak much about it here, I don’t feel the need.

As a young man I fell head over heels in love with the “process” that we as Americans get to participate in, but the idealism that I held onto as a boy was shattered somewhere along the way by the blind faith and pedagogy that I saw as a regular practice in partisan politics. I do not affiliate with either party and feel that most politicians while presenting themselves as bastions of hope are some of the most amoral despots breathing today. Honestly I would imagine that my politics are more aligned with William Ayres then Barack Obama.

However the significance of today is not lost on me.

I am very happy that my now 15 month old boys will never know a world where the color of your skin will stop you from becoming president. Not that I think that we have somehow solved the issue of race in America, but it is a hell of a step forward. I am also very pleased with the general mood of the country as we inaugurate our 44^th commander-in-chief. While conditions are less then favorable for the new head cheese he has still managed to somehow mobilize many people. I can only think that this is a good thing. However, he has a long and rough road ahead of him, and this pedantic bald guy is not going to give him a pass. After all he is a politician, not to be trusted in my opinion.

Although it is my true hope that in 4 years I am running to the polls with the biggest Obama sign imaginable. That I am screaming from the roof tops of his astounding and deft ability as a statesman. That he has declared peace in every country, housed the homeless, fed the hungry, balanced the budget, solved every problem that we are all currently facing. Somehow, I hope, he has restored my faith in the American political system. It is a lonely place when you look at your government as an enemy. Still he has my support. Just don’t blow, man.

I think that much of my cynicism originated from my television. 24 hour news stations, political pundits and comedians as journalists, news stations with an obvious political agenda it’s all a bit much to stomach. Yet nothing has solidified my distaste for the media and for our political system more than the television show called the “West Wing”.

“Wait” you say “that show was amazing.” And you would be right. I loved every second of that show. That is the problem. West Wing began its run in an age where the “reality show” was just beginning to rear its ugly head. Bachelors, unfit parents, interventions, weight loss challenges, began to saturate the air waves while West Wing unfolded its deftly written hour long drama. The show was nothing short of inspiring. Martin Sheen, Stockard Channing, Rob Lowe and a host of other A list actors took us through the trials and tribulations of holding the highest office in the land. It gave us a look at the inside of the White House and how appointees and elected officials guided our fragile country in the way they best thought. Although it was all made up, sure, based on actual events, but not a stitch of it actually happened. Still I found myself with a sense of pride that this man. Jed Bartlet, was my president. He made me proud to be an American. This is the problem. He is not real.

A fictional character was more inspiring than the real thing. I began to think about all the reality shows that proliferated the channels and it dawned on me that the only reality show that we really needed was the only one we weren’t getting. I didn’t care who was getting a rose, I cared who was getting a pardon. I didn’t care who let their kids watch too much TV, I cared about who was allowing kids to get a proper education. West Wing, while an amazing show, shouldn’t have been needed. Our own leader should have been the inspiration we sought. The White House should have the same transparency of the house from “Big Brother”. Yet we are all anesthetized by what we are spoon fed by our cable box. I hope we can all wake up and begin to make some real change. God knows we all need it.

Nevertheless, good luck Mr. President. I wish you well and I hope that in four years we do not regret our decision.

(an aside here: It has not escaped me that the President on “The West Wing” battled MS from the 2^nd season on. For most of the run I had yet to be diagnosed, but found his battle an amazing dramatic devise. If only I knew how dramatic it was going to be. I have since re-watched a bunch of the episodes and his struggle with MS always hit way too close to the mark and often leaves me a bit weepy. Take a look at a few of the clips below. If you aren’t familiar with the show, it is well worth checking out.)

May all your Christmas' be bright...

2008-12-22T13:14:00.001-08:00

So it is that time of year, get out your wool slippers, throw another log on the fire and hunker down for a long winters nap. Yeah it's really cold up here in the great north east, and I'm trying to figure out why I subject myself to this. I hate the cold weather. Hate it! However with this MS thing hanging around the heat has become a bit of a kick in the pants as well. Figures.

Anyway, I hope that everyone is staying warm and enjoying the holiday season. We here at "Did You Montel Willams has that?" ("We here..." I like to to make it seem like my blog is actually a fortune 500 company, and I have a team of advisors and assitants that attend to the blog and it's needs. People running around like crazy yelling things like "Save, save, make sure you save that post!" or "Mr. Faranda this is just came to my attention...."at which point I push everything off my desk in disgust. Nothing like this ever happens but, perception is everything.) would like to wish you a very Merry of whatever it is your celebrating, and if you aren't celebrating then disregard completly. I had hoped to get this out before the holiday but it was a crazy time hardly appropriate for this bald guy to disregard his real family for his new cyber one.

But allow me to take the time now to say that these few months since I have been writing have been great. Thanks to everyone who reads and to those of you leaving comments. It means a lot to me to hear your thoughts. Also, and probably more importantly, to those of you who are witting your own blogs keep writing. There are some amazing things out here and
I have been real lucky to find some of them. It's nice to know that I'm not so alone in this thing. Your words are really important to me as well to many others.

Anyway, Christmas to me is about wishes and dreams, and while it is true that everybody knows that your first wish should be for more wishes, and that trying to explain your dreams in real time generally just makes you sound foolish if not insane, in the Christmas spirit I would like to try to put one of my wishes forth into the world of the waking.

Of course we should be wishing for world peace, the end to hunger, the overthrow of the American political system, but lets be honest these things aren't good for business. I don't think there is a genie, let alone a Santa Clause, we could find to make these things come true. So that then leads me to the obvious: that this damn MS thing didn't exist. That is my one true wish for me and for all of us, but then this of course is not good for business either (theirs not ours). So I move on to my next wish that I think I can get an angle on since it is self made and not really much of a wish at all. That this wasn't some nambie pambie diseased blog it's the place you come for all you musical needs.

A hip cutting edge sorta place where you come to see, listen and discuss the latest in music, but not the kinda stuff you would find on some billboard listing or on the cover of the Rolling Stone. A blog for only serious music aficionados and those looking for a new spin on your record player. You see that is really what I wish.

So here is a blog about music in our new mythical world........(look for normal posts about MS and all that stuff in the new year. Till then Happy Holidays)

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Happy Holidays from all of us here at "Did you know Montel Williams doesn't listen to that..." Things have finally settled down over here at world headquarters as all of my advisers and assistants all have taken some well deserved vacation time. I will be outta here as soon as I get this last post of 2008 up and to you the loyal reader.

So here is the big pay off of the year, what you have all been waiting for: 2008's top 10 albums of the year as per Bald Ben. It was an odd year. A quiet year for the most part, I mean to say that the records that were released seemed to be on the quieter side. Which makes me wonder if the artists were feeling quieter or if those of us listening have just tuned into this quiet sound? I mean its been a tough year all around and who knows what's coming up in 2009? (besides the new Andrew Bird album, Neko Case, Great Lake Swimmers, Animal Collective, M. Ward, Grizzly Bear just to name a few). Furthermore it seems that all the "top ten lists" this year have had a lot in common, but not many that have agreed on rankings. You will notice that my number ten has topped many lists this year, while my number two really hasn't shown up anywhere. One man's trash....

So here is the criteria: the record has to have been released in 2008 (although as you will find I don't exactly follow this). Second and most importantly it has to move me enough to want to give the record the highest of compliments: to purchase it on vinyl. Yes that old school antiquated means of relaying sounds to eager listeners. A large 12" disc generally made of black plastic with circular grooves that somehow hold music. Truth be told I only own one of these on vinyl right now, but the economy is weak, I got kids, and I'm a bit too lazy to get out to a record store to find them. I mean it's the holidays, aren't people supposed to surprise me with presents and what not? I guess I should have put the list out before Christmas. Anyway, feel free to comment and tell me how much of a genius I am, or how terribly predictable.

10. TV on the Radio – Dear Science [4AD/Interscope]
This record has topped tons of lists this year. Not mine. I think this is a great album, but it’s not quiet what I was looking for at least as a topper. There was tons of hype before its release and there was even more after we all got our grubby little indie-rock fingers on it. I resisted, maybe I was just trying to be too cool for school or whatever, but I just didn’t listen to it. No matter who told me I needed to hear it I passed it by. It was in November that I actually broke down and took a listen.

The sonic guitar opening of “Halfway Home” quickly drops the Ramone’s style BaBaBa’s before the smooth vocals of Tunde Adebimpe seep into your veins and helps you realize that you’re not on “Cookie Mountain” anymore. This record is deep with layers and deserves a little more of my attention, perhaps had I taken the time it would have placed a bit higher on my list.

9. MGMT – Ocular Spectacular [Sony/Columbia]
You will find that my list has a bit of a leaning. These days find me listening to much more organic acoustic based music. Luckily for me it was a year that also leaned that way. That being said MGMT’s ablum “Ocular Spectacular” is not any of those things. This is a record drenched in drum machines, delay pedals, and studio trickery to polish these gems of indie-electro pop. The album may run the gamut of styles but at its heart it is just an ironic mess of catchy pop songs.

One of the biggest problems with this record, though, is that the opening track “Time to Pretend” is so good that it sets the stage for an album that would be almost impossible to deliver. Try they might they never quite reach that mark, but they have still put together one of the most solid debut albums to date.

8. Grouper - Dragging a Dead Deer up a Hill [Tape]

This is what ghost sound like….

7. Blitzen Trapper – Furr [Sub Pop]
I have also come to this album late. While it was only released in September I didn’t get around to hearing till after it hit a few “best of” lists that I have some respect for. This is a band that has gotten better and better each time they release an album. The obvious Dylan, Neil Young influences are still very present here, but there is a much deeper understanding of what these folk rock troubadours were/are after. Deeper still are influences of Big Star or a late 60’s early 70’s sensibility to music that I happen to really love. If for the title track alone go find this album and listen to it over a lazy afternoon with your favorite girl/guy near by. Furr is easily my song on the year.

6. Miles Benjamin Anthony Robinson – S/T [Say Hey Records]
This record hasn’t made too many lists. Perhaps it is Robinson’s unabashed take on his own struggles with drugs, depression, and his sometimes homelessness. The lyrics are dark and heavy. The music, while based in folk rock, has a frenetic edge to it that gives the listener a taste of the chaos that he sometimes must live in. Although for all the darkness, there are some hopeful moments as well. Even if it is only the fact that he has unabashedly expressed himself to us the listener. A guy has to think that that has to be good for something, right?

5. Dr. Dog – Fate [Park the Van]
I may be biased here. You see I know these guys. I have known them for a long time. I knew them before they were Dr. Dog, and I continue to be very very proud of them as they release great album after great album. I wish I could take an ounce of credit for the great albums, but I can’t. As a matter of fact I have nothing to do with their music. I do however have a lot to do with listening to their music and being in awe of a bunch of great dudes that can write great songs like I have never heard before.

Well I suppose that isn’t totally accurate. They write songs like I have heard before. Songs from the cabinets of my father’s record collection, from dusty vinyl hidden in the back of some long lost forgotten set, songs from an era that we could only hope to have been a part of. Yet in wearing there influences on their sleeve they are able to surpass and even improve upon what it is they are emulating.

Their new album “Fate” is making lots of peoples lists this year and the Dr. Dog name and their albums have been touted by the likes of Beck and Lou Reed. It seems like just a few years ago when there were only a handful of us going to shows, and now they play to thousands who have the same if not a greater sense of devotion, and it is well deserved. To the Beatlesque vocal lines of “My Friend” or the Waitsian delivery of “The Beach” these boys have tapped into something that we all have responded to since the early earliest days of recorded music, good songs.

4. Fleet Foxes – S/T [Sub Pop]
I grabbed this one very close to release date and loved it from the moment I heard it. Although truth be told lead singer Robin Pecknold vocals remind me a lot of Jim James of My Morning Jacket. There is a soaring quality, an echo that doesn’t need studio mastery to embolden it. It carries you through the top of the grain silo and out over the fields into the mountains that they are so desperately trying to let us know about. This is a credit to the record but for me was also a detriment. The similarities of voice lead me to turn off of the record for a while. Luckily the Ipod shuffle function brought me back to the record and the more I listen to it the more I tell myself to shut the hell up and listen to one of the best records you’ve heard in a long time.

3. Vampire Weekend – S/T [XL]
Easily one of the best records this year and one of the worst. Their hype burned bright even before the album was released which, as with all great flames, begins to consume itself. Yet, the album and the 13 songs you find there can hardly be contained. A bunch of white, over-privileged kids from New York producing some of the best Afro-tinged pop heard this side of “Graceland”. All the haters be damned, these are just good, catchy songs. There maybe a second album, there maybe a career in the future, but for now just enjoy these 13 perfect punchy numbers.

2. Death Vessel – Nothing is Precious Enough For Us [Sub Pop]
I am sitting here listening to this right now trying to figure out how this album makes it to #2 on my list. This record barely made a blip on anybodies radar, but I can’t stop listening to it. Essentially Death Vessel is nothing like what you would think they are. The name quickly denotes some sort of visceral grind core sound, but in all reality it is the exact opposite. A clean record of what is called neo-traditional folk music (what the hell that means is your best guess). Death Vessel is really only comprised of one member: Joel Thibodeau. Joel then adds a cast of revolving musicians to fill out the production.

Here is the rub: Please note I said Joel Thibodeau. Joel as in a boy’s name. I make mention of this so you do not have to go through the same crisis of conscious that I went through. See Joel sings in a very high falsetto voice: a very feminine sound. To further compound the mental image while he sings in this high register, his voice also has an almost pre-pubescent timbre to it.

Now I went into listening to this record (as well as their first record) not knowing this. I assumed it was a woman singing. Imagine my surprise just a few weeks ago when I found out about Mr Thibodeau. That she was in fact a he, and I’m not talking I picked up some girl in a bar only to find out she’s got an….adam’s apple. No, this is just a guy who sings real high. No illusions of femininity. This revelation led me to some serious introspection.
The preciousness of my then favorite record was suddenly lost. My mental picture had been blow to hell. There was no closing my eyes listening to this one anymore. Yet here it is at #2 on my list of 2008. Why, you ask? Well, you get over it and quickly. The songs are so so so good, The musicianship is amazing, and the voice even though it comes from a grown man, is still just as precious as it was the first time I heard her---I mean him, despite all my inner tumult.

1. Bon Iver – For Emma, Forever ago [jagjaguwar]
There has been a lot of talk about this record. Sadly lots of the talk these days is about the validity of the release date. Yes, it is true that this record was released late in 2007 independently. However it was given a much wider distribution in January of 2008 when good sir Justin Vernon signed with jagjaguwar. This is insignificant to me. While I heard some rumblings about this record when it was released in 2007 I didn’t get my hands on it till probably around February, but let me tell you that I had wished I had it before that.

I wished that I had it the day it came out, I wish that I was there when he recorded it, hell I even wish I was sitting on his molars while he was singing it. This is just a perfect little record. Very plain, very heartfelt, hits me in all the right places.

The record itself was made in only the way great or mythic records seem to come about. Ala “Exile on Main St”, Mr. Veron, exiled himself to a cabin in the mountains of Wisconsin (Wisconsin has mountains? Who knew?) a few months later a bearded Justin emerged from said wilderness with a record that will endure in my memory for a very long time. Makes a bald guy wishes he had lots of hair and a big beard and was able to go hid in the woods to find some songs. Dig this record out of whatever shop, mp3 site, or however you procure music, particularly for those of you enduring the snow filled months that are upon us, it will keep you warm in only the way heartbreak can.

Happy Holidays eveyone...thanks for indulging me this year. See you in 2009.....

Throw my ticket out the window....

2008-12-04T20:15:00.001-08:00

I’m not one to be over sentimental or make this blog some sort of monument to the things that simply mark my life. I have no intention to make this my diary or journal, it is just a place for a few musing or thoughts about the things that pass between my ears and stick. Things that I feel are worth mentioning. I need some sort of outlet, right? If I don’t, I get myself into trouble. Currently, I just keep reciting the Presidents of the United States from beginning to end.

Why you ask?

Well, because I can you see. That’s just how smart I am.

Honestly, it is really just a parlor trick. Anybody can memorize it, but for some reason I just keep getting the impulse to recite them. Maybe it has something to do with my hour car ride to work. A bald guy needs to fill his brain with something and I suppose it is better than spitting out the alphabet backwards, although I can do that now as well. Idle hands as they say. I figure if I could juggle while I drive then I might have an act. I could take it on the road….oh yeah, I’d already be on the road, but as per usual I am way off track here.

The reason I point out that my blog is not a place to be over sentimental or a monument is that I am about to do just that. Call me a fraud, call me a hypocrite, it’s fine I have been called it all before. I have also been called buttercup, but let’s not get into that.

The reason I write today is actually a serious matter. My Aunt passed away Monday morning due to complications of ALS, a very cruel and very swift disease that left her incapacitated for the last 6 years.

(Here’s a link http://en.wikipedia.org/wiki/Lou_Gerhig%27s_disease if you want to know more.)

Aunt Faye garnered one other mention here on the blog back in September as I went through my IVIG treatments. One of the nurses that worked in the infusion center where I took my treatment had also taken care of my Aunt at an ALS ward of one of the hospitals that she sought treatment and had remembered her. My Aunt was only 58 years old and for the last six years she sat in a chair unable to move, her only means of communication was to blink her eyes. But far more than the end, it was the beginning and the years before the illness that made such a deep impression upon me.

My Aunt and Uncle lived about an hour and half from where I grew up. We honestly only saw them and my cousin a handful of times a year: Christmas Eve, Palm Sunday, a few other random trips to the area, and a family party that found us leaving the soot and grime of Reading PA to relax at the oasis that was my Aunt and Uncle’s in-ground pool. You see where I grew up people didn’t have in-ground pools, and only a few people had above ground pools. Most of those you didn’t want to get into. So you can understand my excitement at having free reign at what seemed to me to be a private resort.

This resort came with every amenity: more food then you could eat, more soda then I could drink, and I know this to be true because I gave it my best. Although truth be told my Aunt had a full supply of Shasta. I’m not sure who actually drinks this stuff, but for whatever reason she had a ton of it, and to top it all off a traditional water balloon fight between my Uncle and I. It generally ended with him pushing me into the pool. I was happy regardless.

Though the times may have been few they were always deeply anticipated. I looked forward to Christmas Eve like most kids not only because I knew there were a ton of presents coming my way, but upon waking I couldn’t wait to get to my Grandmother’s house because I knew that Uncle Paul and Aunt Faye would be there. My grandparents only lived two blocks away so as soon as I heard that they had arrived I cleared my throat and with my most annoying voice became the bane of my parent’s existence until they broke down and sent me up the street. Of course the lure of presents, my grandmother’s cooking, and the never ending supply of Coke a Cola never hurt, but it had generally been a few months since I had seen my Aunt and Uncle and I bet they had something to show us.

You see Aunt Faye always had a knack of finding all kinds of crazy puzzles and games to occupy us. I suppose it was her feeble attempt to keep us out of the living room shaking the colorfully wrapped boxes whining incessantly, “when are we gonna open presents? when are we gonna open presents?”.

It worked… sometimes.

I can remember her showing us those ridiculous magic eye puzzles, Games magazine, and any number of brain teaser that she could find. I was never real good at them then, but I can always remember sitting in the backroom of my grandparent’s house, with a cacophony of odor slipping from the kitchen, and my Aunt helping us solve some sort of grand riddle. Furthermore when we did rip into the presents, the multi-colored paper now laid wasted on the floor to reveal something so spectacular that even though you didn’t know it, it was exactly what you wanted, and precisely what my Mom would have never bought us because it was “too messy”.

When I was older and I began to get presents that were “age appropriate” I was a bit sad. While those sweaters were real nice, and I wore them all the time, they didn’t have the same punch as the Fisher Price Printing Press and the stained blue fingers that it produced.

When my boys were born I stopped into the hospital gift shop and found an issue of Games Magazine. It reminded me of those days, how they had passed, and it made me wish that my Aunt was able to come and visit us.

Aunt Faye was nothing but fun, and if she was there I wanted to be near by. I remember as a boy how my Dad’s cousin had asked me to be a ring bearer in her wedding. Now this was all fine and good, but I was six and being six you don’t really understand what is going on. Furthermore you don’t understand that the white tuxedo that you are dressed in is rented and needs to be taken care of.

This was a Catholic wedding and as is evident from the length of my posts Catholics are not known for their brevity. I had to sit up at the alter, in a chair that I am imagining was probably used in the Spanish inquisition due to its comfort. Never had I longed so deeply for the hard wood of the pew that my sister and cousin had the good fortune of sitting in. I suppose they expected me to behave, and I guess I did. My Uncle Sam only had to come up like three times.

Nevertheless, after we went outside and were all pelted with bird seed (Of which I ate a ton of. What? I was six and I was starving. Do you know how long that mass is?) the wedding party piled into a waiting limo that whisked them away to the reception, but I stayed behind opting instead to ride with my Aunt and Uncle in their car.

The reception was a drag to a six year old so Aunt Faye and I snuck outside and she let me tear through the grass like only a six year old can. Here’s where the problem comes in: there was a lot of “sliding into second base”. Allow me to remind you I was six, wearing a white tuxedo and I had no idea that grass could pose a problem to fabric. Again, I ask you who allows a six year old to take part in these things?

Needless to say both my dad’s cousin and my mother were pretty pissed when I came walking back into the hall drenched in sweat and a white tuxedo that looked like the swamp thing had just disrobed. I began to hear the things that a small boy hears when he has made a bad (albeit honest) mistake. Aunt Faye just smiled and whispered to me, “We’ll tell the rental company we had a problem with some guacamole.” Now, I had no idea what guacamole was at the time, but what I did know was that Aunt Faye had my back and guacamole or no guacamole it sounded like a solid excuse to me. Now, though, at 31 years old, looking back I’m not sure how the rental company would have cared whether it was guacamole or grass stains, their tux was ruined. I wonder whatever happened with that…..

When I was grown I moved to Philadelphia, much closer to my Aunt and Uncle. I began to see a bit more of them, and felt that my relationship was getting closer to the way I had always hoped it could be. However, it wasn’t long after my relocation that my Aunt started to have problems. It wasn’t my business and I would be told what I needed to when I needed to know it. I don’t remember when I found out that it was ALS, nor do I remember when I realized how serious it was, but quicker than I had ever imagines my Aunt was being taken away from me and the rest of the family.

Once Aunt Faye was in her chair but still able to speak relatively well I sat with her for an afternoon. We didn’t talk much about the disease, just about what I was doing and what I was trying to accomplish. Actually most of the time was taken up with her typing rude things about my Uncle and dad into her new voice computer. When they came back from picking up lunch she unleashed a barrage of digital epithets that were less then flattering. She had a great sense of humor (you have to to survive in my family) even when she was incapacitated in her chair. My Uncle would show her a board with the alphabet written on it and she would blink as the letter she was looking for was spoken. You would write the letters down and read what it was that she wanted to say. This was a slow process and sometimes very frustrating, but there were many instances that she made a mistake that I believe was on purpose just to confound my Uncle.

The last time I saw her was at my cousin’s house. The summer party had been moved there despite the lack of in-ground pool (a bit of an oversight that I will forgive them). As my Uncle helped one of my Aunt’s nurses load her into the van at the end of the day I walked with them. My wife was very pregnant with our boys at the time and I said to my Aunt, “I’m gonna try to come out and see you before the boys come, because God knows what’s gonna happen once these two monsters are unleashed.” I could see her smile, if only in her eyes, but it was a smile. Sadly I didn’t get out to see her, and once the boys did come time was non-existent. I kept saying to my wife that we really need to take the boys out to see my Aunt, but it never happened. For that I am sorry.

I am so sad that she has passed, but what is far more devastating is the loss of time. Which I suppose is always the true shame of death. I wish I could have talked with her. She was unable to speak when I was diagnosed with MS in 2005, and she was one of the few people I thought might have an insight to the road that I was walking down. While ALS and MS are very different diseases there are many similarities in the pathology, but more important the psychology. The things I think and feel I would imagine she went through, on some level, as well. I like to think we could have helped each other in some way. At the very least I know she could have helped me.

Although perhaps she did help me in just being as she was. We look at the people as we loved them, we look at ourselves, we hold memories and images in our minds and hearts and despite the fact that they are unable to be themselves I always imagined she was who I knew her to be. She was just unable to express it in the way that I knew her to before. Locked in they call it, and I think that it actually applies to many of us. We were locked in to the image that we had already lost; an image that had made an indelible impression upon me and one that I didn’t want to lose. Yet now there was a new version of my Aunt and I’m not sure that I was ever able to adjust to the changes.

Yet, many of the same changes are affecting me now. Not in the same way and if it all goes well they won’t be as destructive, but I remember my Aunt’s cane and then her wheelchair and neither of us aware at the time that these events would be so relevant to me today. I look at so many situations now with a deeper scrutiny an intense yearning, and I wonder what she would have said to me. Would it even have been remotely relatable?

I do look, though, to what she did do. How she was able to stay here with us for as long as she did inside of her own body. The strength she proved to us with out lifting a finger, the grace that had shown so brightly though she couldn’t breath on her own, the truth that despite what problems beset us our spirit can always be stronger.

So, go to your dad’s record cabinet (or your own, that’s my plan) pull out Bob Dylan’s Nashville Skyline, (which you undoubtedly have) once Aunt Faye told me that this was her favorite record, put the needle down and raise your glasses high. Drinks are your choice…..I think I’ll have a Shasta.

Here is to my Aunt Faye

All my deepest love, respect and thanks

The force will be with you, always

2008-11-14T13:49:00.000-08:00

Wandering through the hallowed halls of my place of employment yesterday I noticed the wonderful people who are kind enough to supply us with Health Insurance had set up tables. It was obvious by their supply of free pens that glow iridescent when you click them and neon green change purses that were admittedly empty but open for the filling, that their warehouses had filled to the point of bursting. And instead of paying an extra storage fee, which they would have undoubtedly been charged, they showed up here to share the wealth. Then I thought maybe I am just being cynical. Maybe they had come simply for a smile, a handshake, a chuck on the shoulder just to let us know we were appreciated. I’ll bet if I asked I could have gotten a back scratch.

While the back scratch had seemed enticing, I tipped my hat and moved on, there was no reason for me to stop, the support that I had received, while not the top coverage I have ever had, was working out okay. Obviously the representatives of one of the largest health care conglomerates were there to let the good people know that all was okay. I mean in these times of economic turmoil it could lead one to question the solvency of those stead fast institutions that help us rest easy at night. I put it from my mind and set to work.

I had a busy morning. First I completed payroll, then off to a production meeting where we discussed the shows coming up in the next week (nothing of note. It’s close to Christmas. Tours start to pack it up at this point. Even the famous like to eat a turkey or hope for Santa.). I then busied myself on the arduous task of music blog updates. I have a few sites that I dig into that keeps me hip to the scenes that I was once a big part of. It helps me forget that I am over thirty and not to be trusted. Which honestly I understand, I don’t even trust myself most days.

“Dude, did you see that old bald guy hanging around? He looks like a NARC.” At this point my wife, disgusted, sticks her head in and says, “Dude,” her sarcasm biting, “you’re talking to yourself in the mirror again.”

Then of course I wander onto many of the MS blogs that I dig on. Let me just say there has been some really amazing stuff filtering though cyber space as of late. I have added a new blog over there on the right. Living life with sarcasm, kids and MS is a pretty great read. Take a look, and for that matter the rest of the blogs that I have had the good taste to include are well worth your time. Turns out over at No Empire they celebrate my wife’s birthday as well. Who knew? Although truth be told it’s not necessarily for my wife as much as they happen to share a birthday. Nevertheless, happy birthday to one and all, mine is in May. See you then.

It was about here that I got down to my real work of the day: Star Wars clips on YouTube. This can get a guy pretty hype, I mean take a look….

Then of course is the classic…

Luke was so whiney…

Anyway, while digging deep into the ‘ol YouTube archives (And I mean digging, oddly enough, there are very few bounty hunter clips. The balls on these people not to upload copyrighted Boba Fett clips. Although, I had enough to chew on with the Star Wars Holiday Special, come on, cooking with a Wookie? It’s a classic.) A co-worker came up to the cube behind me and began to rant and rave about the health insurance changes and how we have to take a survey or our rates go up.

Wait, wait, wait….She’s not talking about my health insurance. She can’t be talking about those nice people out in the lounge area that brought us all those free pens and glossy folders with tons of useless information inside. She has to be talking about another health insurance, right? She’s talking about another company. Right? Would these people be so friendly with their pens and such while they are sticking it you? Well after a few exasperated moments, a couple of, “are you serious.” A few, “are you sure?” an emphatic, “who told you that?” and a handful of “that’s gotta be illegal.” I figured I had better go get the answer myself, straight from the mouth of the good people who had pens to give out.

“Ehmmm…excuse me sir, one of my co-workers here….honestly I, ah…I think she’s a bit…well you know…soft, well she said, and please excuse me, I feel a bit funny for even asking you this, but the thing is, she said that there is some sort of survey we need to take in order for our rates to stay the same. I know it’s silly, sorry for…..”

“Yeah, but their’s no guarantee that the rates will stay the same. It’s a “risk assessment” test. It gives your employer an aggregate tally of all the employees here, and how much of a “risk” they are in. Here take this glossy folder there are bunch of changes that you should be aware of.”

I stumbled back. My world shook. Everywhere I looked it was as if people were laughing at me. Everything was spinning, the very foundation of that which I believed was crumbling around me, and I had no where to turn, just a glossy folder and an iridescent pen. In this new paradigm were cats and dogs still mortal enemies? Did Pepsi really win the Pepsi challenge? Where in fact was the beef?

Well, I suppose I am being dramatic and this isn’t entirely true. I did step back but only so I was far enough away from the dude so I didn’t jump over the table and make him wish he had different health insurance. Did the guy really just say, “how much of risk my employer's in?" Apparently he isn't aware that the multi-billion dollar company I work for doesn’t have MS. Yes, while their profits have been a bit necrotic as of late, I think they're gonna be just fine. My legs however, well the jury is still out on that one. Yeah I got your risk right here, buddy..

So it turns out if I don’t take this Risk Assessment test my rates jump $30.00 a pay period. What makes this even more insidious is that no one in the company has been made aware of this test unless you went up and asked specifically about it. Furthermore, they are pushing one of my hospitals out of their plan. Apparently it is no longer financial sound to use one of the premier hospitals in the region and the country. Allow me to quote from the literature…..

Our Insurance has an obligation to you to try and keep health care costs in check while providing you with access to high quality care. For more than 75 years, we have taken that obligation very seriously when negotiating with hospitals. We understand that we are negotiating on your behalf. After all, your premium dollars are used to pay for the services of said great hospital.

We also want you to know that for some time we have tried to negotiate reasonable rates with your hospital, but we were unsuccessful. After our termination letter was sent, the hospital responded by sending us a proposal with lower rates.

I don’t remember getting a call when they were negotiating. I would be the first to tell you that what ever premiums that might rise I would be more than happy to pay if I am able to see the doctors and go to the facilities of my choice as it was when I began the plan. Furthermore, the last sentence is infuriating. It turns out the insurance company is really just playing some sort of half assed game of chicken with the hospital. Well, I’m blinking, look at me I’m blinking, Uncle or whatever the hell you want me to say, let’s put on the breaks here before somebody gets hurt or losses an eye to optic neuritis.

Of course it really only gets worse from here: co-pays change, what facilities I can and can not get my MRIs in change, the formulary on the prescription plan is changing and my copaxone, while still covered, suddenly will cost me $100.00 more out of pocket for a total of $200.00

An aside here…..
I realize that I am bitching about something that many Americans do not have the liberty to bitch about. I am being a bit of a dilettante here. I was in fact one of those 47 million Americans without health care when I was diagnosed, and understand what a blessing it is to have some sort of coverage. However it is painfully apparent that something needs to done and done quickly in order to heal people that can be healed, and care for those that need the care. Everyday the country proves that as Bono wrote, “the rich stay healthy and the sick stay poor.” Health care is a business and we are just the cogs that feed the machine. Cures are bad for business.

Well for those of you who have been reading you know that I am very rarely at a loss for words, but this new info and the way it was so nonchalantly handed to me really took the wind out of my sails. I slunk back to my desk, feeling a bit sorry for myself. Yet the words of Yoda rang through my head, “do or do not. There is no try.” So, as if the force itself was lighting up my bald head I took a stroll back out to the tables. I formed a series of thoughtful questions and I wanted satisfaction, nay, I demanded satisfaction.

“excuse me sir, could you tell me….”

“it’s all right there in your packet.”

“Yes, but I was hoping for something a little more specific.”

“Oh right, well you can see here on the bottom of the first sheet the 800 number. They will have all the answers you need.”

“You can’t answer my question?”

“No sir. I’m sorry. We’re not qualified.”

Remember that speechless thing before….Color me dumbfounded.

Health Insurance is really the reason I work where I do, at least in the field that I do. I went to college and studied photography and film. I worked as a photographer and film maker for a few years out of college. I loved every second of it. Unfortunately being self employed does not come with health insurance. Yet I was relatively healthy, and starving for my “art” was perfectly acceptable. It actually helped. Pangs of hunger really help the creative process.

However I had to do some other work to supplement my income. I got involved with being a go-for in concert production (called a runner. Cause you’re running back and forth looking for the most inane things that nobody actually needs. That’s a different story.) and before you knew it I was offered a full time position. Now this is where many of you reading might start to say, “Bald Ben you’re a sell out”. Well, I’ll kindly tell you to shove it and shut the hell up.

I had been getting knocked on my ass by cluster headaches at that point for at least six years. (I haven’t talked much about the cluster headaches. There will be a post at some point. However I have been headache free for a year for the first time since I am 17. I am afraid of tempting the devil.) The only medication that worked cost $150.00 per shot (at the time). There were many days I was only making $150.00 for whatever work I was doing. There were more times then I care to count that I woke up had to take a shot and then go to work. Essentially to work for nothing, just the medicine I had put into my arm that morning. Sadly I knew that I would most likely need it again that day. Talk about deflating.

It was around the year 2002 that I had all but depleted my savings and knew that the headaches would soon return. So when someone offered me a steady paycheck and pretty sweet benefits I really had no choice. You see this goes back into an earlier post where I knew there was some sort of problem, bigger than the headaches, but everyone else just kept on telling me I was delusional and all I needed was to chill out. Guess I showed them. So I got involved in the world of concert production which I soon found out is a load of crap and for the most part completely against most of my moral code. Yet somehow I guess I’m half way decent at my job because I keep getting offers for other positions, but as they say beggars can’t be choosers.

Another aside:
Again I realize that I am bitching about things that many people don’t have the ability to bitch about. Everyday we hear of more and more lay offs, unemployment is insane. These are the people that should be bitching, and I bet a lot of them are, and rightfully so. So please do not think that I am not aware of just how fortunate I am. Truth be told most people would think that I have a pretty neat job, if they knew the truth they wouldn’t, but I digress. If I had my druthers I would be somewhere else, making movies, taking pictures, flexing a creative muscle from time to time, MS free. Like I said beggars can’t be choosers.

Long story short: They are changing my insurance on me. Remind me why I do this again?

Curse? What curse?

2008-10-30T11:09:00.000-07:00

Curse has been broken, but for those of you keeping score...I still have MS. But allow me to be the first to say that if I do get cured of MS at some point I will need the following things:

1. A dog pile

(See picture above...Like that. I'm not sure what you had in mind, but the phrase dog pile has so many connotations. And truthfully I'm not a big fan of dogs. I'm the jerk who always ends up getting bit..."oh no, go ahead and pet him. He's very friendly. Never bit anyone." CHOMP!)

2. A parade down Broad St. in Philadelphia

( I want no Mummers, again I repeat no Mummers. For those of you not familiar please take a look. Yes, these are grown men dressed up in all sorts of regalia for a very long parade on New Years day. These are the same guys who make a point of call you all sorts of horrible names on every other day of the week for what you look like. Again for the record I do not want any Mummers.)

3. I want a product endorsement deal with Subway.

(Ryan Howard, Phillies first baseman, currently has this role and I think that I can write a better poem about Cheese Steaks.)

4. I want dudes to be so moved by my victory over MS that they do this:

http://www.youtube.com/watch?v=MufTb-D4AcE

(they disabled the embed function)

(This guy is in South Philly. Apperently they don't grow 'em so swift down there.)

Way to go Phillies. It was a hell of a ride.

If they break the curse of William Penn, does that mean I am cured?

2008-10-22T17:52:00.000-07:00

So I have a superstition (actually I have a lot, but lets discuss those that really pertains to us here and now). As I have mentioned before I live in Philadelphia. Philly is a world unto itself. Two hours from New York City, three hours from D.C., not a bad shot up to Boston, yet somehow even though we live in the shadow of so many "great" places, Philadelphia, has held true to its roots. A working class town that takes shit from no one. Sure you've got your pretension and you got your "rednecks”, every place does, but I have always felt far more comfortable in Philly than in any other city in America. Philadelphia is home.

Many of you may have visited our fair city here, seen the Liberty Bell, ate a cheese steak, ran up the art museum steps like Rocky, but you left and went back to where ever it was that you lay your head. However on your way out of town I'll bet you got a shiver. Little pins and needles up and down your spine (yeah kinda like having MS). Although I bet you just couldn't put your finger on what it was. Sure, cheese steaks, Bells, and Museums are all lodged in your collective consciousness like a vendor cart soft pretzel in your throat, but every day we here in Philadelphia wake up with that chill and know that we have not won a major sports title since 1980 when the Phillies last won the World Series. Oh we have come close. So close we could taste it, but regardless of how good the team was, we here in Philadelphia, with a collective sigh, always seem to be looking toward next season. There are a lot of reasons for this, but many serious sports folk in the Philadelphia area will blame it on one thing: The Curse of William Penn.

The short story of the curse is Philadelphia's City Hall has a large statue of William Penn atop. Until 1984 there was an ordinance that precluded anyone from building higher than Mr. Penn’s hat. Ordinance struck down, a few skyscrapers go up in center city Philadelphia, and BAM suddenly a town once rich with sports heroes is a graveyard. Coincidence? Perhaps, but allow me to point out the newest and tallest building in Philly that opened in May of this year had the foresight to include a small statue of William Penn on top. For those of you who haven't noticed the Fightin' Philadelphia Phils are in the World Series for the first time in 15 years.

Baseball is a sport filled with superstitions, far more than any other sport in my opinion, these superstitions often times trickle down to us the fan as well, particularly here in Philly. For instance: I NEVER wear team clothing on the day of a game, further more I NEVER watch the first inning. Why I couldn't tell you, this is just one of those things that has developed over many years of watching the Philadelphia Phillies.
For Example:
Wednesday night I walked out of the room for the first inning and Bam Chase Utley hits a two run homer, which set the tone and won the game for us.
However game two while I did not watch the first inning, the Phillies still lost. How is this you ask? Well, Bald Ben was not so bald that day. I wore a knit Phillies cap from morn till game time. Sorry guys, I wasn't thinking.

It is currently tied at one game a piece, and tonight the Phils bring it home to Citizens Bank Park. While Tampa Bay is a formidable opponent and has really accomplished a lot over the last year with their club, nothing has prepared them for Philadelphia and their fans. There may be 9 men on the field, but in Philadelphia there is a tenth player...the fans in the stands. I will not get into the exploits of Philadelphia Sports fans, but know it is a breed unto itself, and a force to be reckoned with.
But I am way off point here, as is usual, but this is really all just set up for what I am trying to say. Again as I mentioned in a previous post, I am by no means a jock. I was never real good at sports, I enjoyed a pick up game of whatever the boys were playing, but I was never one to go out for the team. Further more I always found it very boring to sit on a lovely weekend and drool over a bunch of dudes ramming each other...a wait...I mean...you get what I am saying. The one exception to the rule was baseball.
I grew up in Reading, PA where the Phillies have one of their minor league teams. My Pop owns his own business just a few blocks from the stadium, and we use to go there a lot, but once a year I would win tickets for a Philadelphia Phillies game.
You see, I went to Elementary School in a day where schools were improperly funded, and they would have to hold fundraisers in order to secure the necessary financial stability for the school year. I know it's hard to believe there was such a time where a child was handed a folder of useless products and then expected to walk around the neighborhood hocking their wares in return for some cheap prize that could have been bought at the dollar store. It was a different time, dollar stores were not so ubiquitous, kidnappers and pedophiles were just pulp fiction novel creations, and there were so many old people in my neighborhood that it was like shooting fish in a barrel. All I had to do was flash my pearly whites and hand them the product descriptions and viola a few cookies in my tummy and an order for 8 boxes of pecan chews later and I was on to the next house.
While we were not out roaming the country side begging for alms of the poor schools, the power structure inside of my hallowed halls brought out another classic way for us to raise some money and deflect the responsibility of actually teaching: a Read-A-Thon. This was not just any read a-thon however, it was to help cure a disease known as MS. This was actually, as a youth, my introduction to the disease that is now reeking havoc inside of my body. Odd, huh? We were handed a piece of paper, we listed all the books we read in a two week period, gathered up some sponsors to pay money for each book we read and then we got to choose from a similar list of cheap dollar store prizes. Although on this list there was one thing that actually sparked my interest: tickets to see the Philadelphia Phillies. I wasn't sure what this MS thing was, but man, who needed a cure when they were getting me to Philadelphia to see my favorite team. In retrospect maybe I should have aimed a little higher, but you know, hind sight is 20/20.
So sometime in the school year they would hand me two blue square pieces of paper that entitled me entrance to Veterans stadium to see the Phils. Honestly I have no recollection of who won when I was there, I know that the tickets were always for an Atlanta Braves game, but I do remember the first time I walked out of the vomitoriom (that's the proper name for the tunnels that lead to the seats in large arenas. A little knowledge I picked up along the way that I am now passing along to you.) We were of course way high up in the stadium, and I had no idea what I was going to see. I was use to little old Municipal Stadium in Reading, PA you sat right up on the field. It held like 7,000 people. As I came out from the vom (now I'm getting fancy, that's the slang version of vomitorium) to see the 60,000 plus seats stretching out around me and down below the brilliant green of the field, it took my breath away. I got a little scared being up so high on such a pitch, but I had never seen anything like this, and it was beautiful, albeit a little overwhelming, but beautiful to a little kid.
The day that my doctor called me so many years later and said, "Ben, I want you to go see my wife's neurologist." I obviously knew that there was a problem. Honestly in my mind there was a tumor. I asked my doctor to level with me, why did he want me to see his wife's neurologist? He hesitated, but he knew me and I guess he figured I could handle it. He said, “Well, it looks like MS."
Many of us have heard those words. Many of us know how devastating it is. Although, the first thing that came into my mind was a picture of the tickets that I was handed when I was a kid. The excitement that went along with that envelope and the winter months I would have to wait till I got to use them. Large squares of blue with red type and a cartoon picture of a dog. What the dog had to do with it I have no idea, in my minds eye it is the slush puppie dog, but this just has to be a confused memory. MS was just two letters on the paper and the reason I was able to get tickets to the see the world class Philadelphia Phillies. I never knew what MS really was despite all the fund raising I did in its name. Unfortunately I would get to know all too well what those two letters represented.
I just think its funny the circles that our lives move in. MS was actually an important part of my youth without me ever realizing it, and now on a very different level it is an important part of my adult hood. I suppose we could find new neurosis in this and garner a new set of superstitions, but it is hardly worth it. Superstitions aren’t going to change my disease, nor, in truth, are they going to win the World Series. They are just a small mans way of trying to make sense of a bigger picture that I will most likely never understand, a control mechanism that really gives me no control. I realize that hundreds of other kids have participated in the MS Read-A-Thon and they didn’t get MS. Dumb luck I suppose. It’s just very easy to draw lines and connect dots when you are on the other side of time. Whatever the case Go Phils!

p.s. we are on a rain delay right now. We don't have a fancy dome like Tampa Bay, so we have to wait out Mother Nature.

p.p.s I know that there are a few people from the Florida area that are kind enough to peruse my blog. Let me be the first to applaud you on a great season, however also let me be the first to say thanks for helping us break the curse.

Send in the Clowns...

2008-10-05T09:04:00.000-07:00

http://www.nakedclowncalendar.com/

While driving to work the other day I heard a little blurb on NPR about a calendar. A calendar? Yes, a calendar. While such mundane things might have just passed me by like a healthy immune system, this got my attention. First, this calendar was of just clowns.

"Ehh, okay, clowns what's the big deal?" you ask, "Clowns are okay they make some people laugh and all, but they are really kinda creepy."

I might have to agree, but it only gets better from here.

So far we know we have a calendar, we know that it is twelve months of just clowns, but this is the interesting part. It is not only twelve months of just clowns, it is twelve months of just NAKED clowns. Yep, naked clowns. Now, again you say, "While this is sorta of disturbing, and by sorta I mean really, I'm curious to know why it warrants mention here on your MS blog. " Funny you should ask, first let me point out, I do not have a penchant for clowns, clothed or otherwise. The reason it gets mentioned here you see, not only is it twelve months of just naked clowns, but all proceeds go to MS research.

Wow!

Who needs bike races, runs, walks, read-a-thons, jump ropes, doing it till it hurts when you got this? I think we can all rest assured that we'll be seeing a cure anytime now. Just sit back and wait; the clowns are on the scene. I can't believe that nobody thought of this before.

Now this begs a ton of questions:

Sadly the website has very little in way of sneak previews of the clowns. You can see clearly that the clowns are wearing makeup on their faces. Where else is makeup being applied? Secondly, it is clear that some clowns are wearing their red noses, but are they wearing their oversized shoes? Where are they going to pull those multi-colored handkerchiefs from? Lastly, can we expect a calendar from the lion tamers next or would this just be too hazardous?

A bald guy’s got to wonder. I'm not one for unsolicited promotion, and that is not what this post is about. However, take a look at the site. I'm sure there will be any number of better jokes you can come up with. By all means please post them here. I mean look at those big grins on their faces, I realize they are clowns and all, but come on….

.....is that a banana in your pocket, or....oh your not wearing any pants....

Would the real Bald Ben please stand up......

2008-10-01T13:45:00.000-07:00

I never much thought of myself as a "blog person". Sitting here writing some sort of blather about myself for others to read never really seemed of much interest to me. Then my wife got pregnant. One might ask, "Hmm, how does your wife getting pregnant lead you to blogging? I would think you would have a lot more to think about?"
Your question would be a good one, albeit a little short sighted, but a good one nonetheless. You see, my wife wasn't only pregnant with one baby, but she was pregnant with two babies! Yep twins. This as I have been known to say is proof there is a God and he has a very dark and wicked sense of humor.

Picture it: It's a lovely day in heaven. Large white billowy clouds, soft harp music in the air, well manicured lawns, you know....heaven. Standing by the pearly white gates, God, calls all his buddies around, "Buddha, Moses, Vishnu, Jesus get over here.” As they gather they realize that God has got a real rip snorter and He can barely hold back his laughter.
Now, God has been known to tell a good yuke from time to time, (i.e. floods, pestilence, duck billed platypus) but if he already can't contain himself this has got to be good. “Wait till you see this,” almost bursting in hilarity, “See that Bald guy down there?"
"Yeah" They reply choir like.

God bellows out," allakazam!"

ZAP!

Bald Ben's got MS.

God is rolling. He almost starts a thunder storm he is laughing so hard.

The other deities look at each other a bit confused. You see, Buddha never understood this whole incurable disease bit. He’s more of a knock, knock joke guy.

Knock, knock…
Who’s there?
Buddha.
Buddha who?
Don’t cry, it’s just me the Enlightened One…..

And Moses was still trying to figure out how the Jews, after thousands of years of persecution, were supposed to be the chosen people. Jesus, being the savior and all, meekly taps God on his great big omnipresent shoulder and says, "Dad, ummm, that wasn't really that funny." God, still laughing, eyes his eternal Son and says, "Wait for it, wait for it...."

Another allakazam!

ZAP! Bald Ben is now the father of twin boys. All the deities break down in uncontrollable laughter at the great cosmic joke that was just played on the poor kid who lost his hair when he was 16. If you listen real close, you can still hear their eternal mirth.

But I digress, I started the family blog (It's linked to on the left there. Two babies, one Bald guy, and a woman who can't tell the difference: a love story.) Simply because I was feeling a bit lazy and antisocial. "Hold the phone," I hear you say, "Lazy and Antisocial? Blogging can be a tough hobbie, and it ostensibly connects you to thousands of people at one time."
Ahh, you are right. If done with a little bit of heart and elbow grease blogging can be a full time job. However I am not looking for anything permanent thanks, just a little part time thing on the side will do just fine. The laziness and antisocial behavior came out of the fact that I didn't feel like having to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum. Oddly enough despite the blog, I had to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum.

However something odd happened along the way,

"Did you step in Dog poop?"

No, I did not step in Dog poop. Well probably somewhere in there, but that's a different story. No, what happened was that I found out that I liked blogging. I was writing and rewriting and then once posted checking back for comments and the like. I was sorta addicted. Oh great, now I got an incurable disease, twins, and an addiction? How much can one Bald guy take?

Ed. Note: I don’t want it to seem that my boys are any sort of burden or that they are not the center of my world. I love them with everything I got, but it just seems that odds are you're only gonna get one at one time. I guess the odds are against me.

So a few months ago I started toying with the idea of starting this blog. My health is in a constant state of flux and I wanted to let people who cared know about the changes. Somehow it just didn't seem to fit on the family site, I didn't want to bog it down. It was a site about our kids not MS. Furthermore, I was hoping that there might be a larger community of MSers out here. Maybe get the opportunity to share some stories and thoughts with others in the same boat and perhaps gain a little perspective.
The group meetings thing never really seemed for me. I know that it has helped a lot of people, but perhaps based on my own biases or fears I just can’t see myself joining such an organization. On the other hand I realize that this blog is like one of those meetings. A central point for lots of us with MS or sympathizers there in to sound off. I suppose I didn't realize that the connection between us through MS is pretty important. Incidentally for those of you who are reading or have left comments I'm real appreciative.
Anyway, let's get to the point here. The reason I write this is in response to another post I saw a few weeks ago on another blog. I was leaving a comment when I realized that it was much more of a post. They had recently written about disclosure of their true identity and personal details and how they would not reveal such things on their blog. While I respect such a choice, I begin to wonder about my own choices when it comes to identity.

I have spent 31 years being who I am. Some love me, some hate me, many are indifferent. I have never been one to listen to popular opinion or measure myself against others. Why this is I do not know, I have always just been pretty self assured. This can get me into some trouble, but I say stick it in your ear. Why the ear you ask? Cause I am too nice to tell you to stick it somewhere else.

So back to the point....It never dawned on me to somehow hide who or what I am on my blog. It sorta seemed like the very point of keeping a blog. I found, the old adage, honesty is the best policy to garner the greatest results. And by being honest I mean being truthful about myself.

I'm comfortable with who I am, and have been for a pretty long time. Therefore what do I have to hide? So ask me a question, go ahead ask. You wanna talk about music let's talk about music, you wanna hear about my crazy family let's talk about my crazy family, you wanna see my ass I'll show you my ass, you wanna talk about my disease let's talk about my disease. As they say knowing is half the battle, and I am an open book.

However, there are a few exceptions here in cyber space. On my blog I choose not to name my doctors or the medical institutions that I frequent. None of these people or places have asked for any "fame" or notoriety due to my writings. I think it only fair that I give them courtesy and respect of their privacy.

It is obvious enough to anyone who might be familiar with the Philadelphia area the places and perhaps some of the people I talk about. There is enough information here, as well as on my family blog, to put two and two together. So be it.
My job is a whole different story. I work... let’s say outside of Philadelphia, very near the seashore, where there are lots of large neon signs. (Again for those of you in the area I think you get the picture.) I work in a more upscale place that has those neon signs, they deal in a lot of money, and in order to obtain that money they need to make their clients comfortable. They do this through a series of "Games" and "Entertainment". I work on the "Entertainment" side of things. Essentially I put on big rock concerts for the people playing the "games".

I will not name my employer for a few reasons. First is the same reason as I won't name my Doctors. This blog is not designed to promote or relegate my employer in anyway. I have made the choice to work for them, that is on me. Second reason is a bit more complex.

I was warned at my "orientation" that my employer has people on staff that looks specifically for mentions of the place. This they tell me is so they are able to keep the name of said place in a good light. That sounds like some job, but I don't really believe that there are employees here that are actively looking for blogs and whatnot, (I have been to the IT department, there are a lot of dudes who just talk about video games.) but the point is made: You are to stay in line.

This is one that hurts a little. I am not one to just "stay in line". As I walk through my place of employment I can see that the vast majority of people here, as my good friend Maya puts it, have "drunk the red kool-aid." They have all bolted their smiles in place and have convinced themselves that we work in an amazing place. They work here, they hang out here, they talk about it at home, put up banners on their facebook pages. I do none of these things and I promise I never will. Do not misinterpret what I say, I'm not some great non-conformist, but I will be damned if I am a sheep. I work here, they pay me money to be here, when they are not paying me money to be here I will be at home or some place that I would rather be.

Honestly, let them can me, this industry is not part of my identity in any shape way or form. I just happen to be good at what I do, and people keep offering me jobs. I'm the jerk who keeps taking them. My kids like to eat, I like to eat, we therefore need to figure out how to eat. This job is the best way that I have for now. Although, it would be sweet to get fired over a blog post, how ridiculous is that?

But back to the point here: identity. I feel that I have started this blog for that very reason, my identity. Not to simply define myself on, but to suss out some of the things that are bouncing around under this Bald exterior. As all of us know it isn't always easy to see our way around down here, add MS and it gets a lot tougher. It is easy to just give in to the mentality that I am sick, that is who I am, the path ends here. Conversely I could also convince myself that I am not sick and it is business as usual. In being honest with myself I know neither of these scenarios are true.

MS does not define who I am, however, it does inform everything I do. The things that frightens me the most is the way I feel I have slowly been losing portions of my identity because of MS. The things I was able to do five years ago aren't necessarily what I can do now. The disease has snuck into some of those corners and prohibited me from being who I always was and who I want to be.

For instance:
I have made a few mentions of music on the blog so far and how important it is to me. I have played music since I was 10 years old. I worshipped it long before that. At 10 my parents finally gave me the guitar that I had been begging for. They, like most parents, were concerned they were gonna shell out all this money and it would just end up in the closet. Luckily, they were wrong. There were very few days that I ever put it down, I even got pretty good.

I played in bands, wrote lots of songs, got calls from other bands when they were recording. I wasn't the greatest guitar player there ever was, but I had a lot of heart and a pretty good feel for what needed to done. I was proud of my accomplishments as a musician, I have no delusions of grandeur, I just loved to play with anyone that wanted to play.

In 2005 while sitting in my living room with a few other friends playing music I got an intense pain every time I tried to put my left hand around the neck of the guitar. Afraid that it might be carpal tunnel or something I took a break. The pain persisted. It of course led to a whole host of other symptoms. I know now that this was the first step in discovering what was going on in my body. A few weeks after the diagnosis the pain subsided and I continued to play.
However, soon a new problem arose. The numbness in my fingers was interfering with making chords or finding the right notes. I had no idea where my hands were or how hard or soft my fingers lay on the strings. Never had I been so frustrated, I knew what I wanted to do, I knew where I needed to go, but somewhere the lines got crossed. Unfortunately these weren’t mistakes I could come back and revisit. When a mistake was made it generally made a hell of a racket. Since my boys were born in October of 2007 I may have picked up the guitar 2 or 3 times. I still look at it everyday.

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I have been blessed with an amazing network of friends. They have been a support system long before I was diagnosed, and they are still a great comfort and joy in my life. My good friends Andrew and Elisa were married a few years ago and had a really great wedding out in a park. There was an area for musicians to play music, there was food, and there were baseball diamonds.

I had just gotten through my first relapse and was very afraid of an outdoor wedding in August, but I had to go. I figured like some half assed politician I would make an appearance, shake some hands, and head home. It was warm that day, but something about being out and amongst my friends told me I was going nowhere. After being cooped up for most of the summer and only speaking with people on the phone and computer I was finally back among the living. I felt like a normal dude, MS didn't matter it was a joyous time for Andrew and Elisa and silently it was a joyous moment for me. I felt a little triumphal.

When the baseball gloves came out I could feel my blood pressure start to rise. Baseball is another one of my true loves. I knew it was a bad idea to try to play so I watched for a bit, but I just couldn't contain myself and had to take the field. I told my wife, "just one inning." three hours later I came off the field, limping, dusty, but with a sense of well being.

Our mutual love of baseball and disdain for the jock mentality led us to form a ragtag baseball troupe that would get together as often as possible at one of the many unused diamonds in Philly and play 9 innings of ball. Some of us were terrible, others really had the knack, but it was always in good fun; A reason to hang out for the afternoon with nothing on the line but a few hours in the sun. Last summer it seemed I didn't miss a game, always with plenty of water and my hat (Phillies of course). The days would often end a bit earlier for me, but I always made it out.

This year is another story. Every week it seems I get another email about where and when the game will be, but I know I won't be there. This summer has found me hiding in doors. As a kid I lived for the summer, open the windows, the doors, get in the swimming pool. The hotter the better was always my mentality. I never was a fan of air conditioning, I've been penned in doors all winter, I want the air, the sun, the heat, hear the world around me. MS has other ideas.

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Lastly and maybe the worst is the role that MS will play in my children’s life. When I was a kid my Dad took us to every amusement park in a 500 mile radius. He loved going on rides and walking the parks till sunset. Some of the best memories of my Father lie in Dorney Park, Hersey Park, Disney World. (a little farther than 500 miles, but you get the idea) It is here that as a boy I began to form my concept of how to be a grown up, a father. Formative experiences that perhaps I hoped to communicate to my future children. These same experiences that I shared with my father, that I now realize I counted on, may never be realized in my own children’s lives. Walking a park in the height of summer, roller coasters, and spinning rides all seem so far from my grasp. The last time I went on a roller coaster I had to sit for hours to regain my balance. My wife and I took the boys to a local park with a merry-go-round recently, and the slow revolutions all but ended my day. I have nightmares of being the guy who sits at the concession stand mindfully watching everybody’s bags, the only excitement to be found as the kids exit the ride ready to do it again.

It is these things that are being slowly taken away from me that make me wonder about my identity and how it is changing because of Multiple Sclerosis. There are lots of other things that I could pull out that aren't the same, that's pointless. These three essentially tie into the bigger picture of my life and what I fear is slipping away. What do you do? How do you save these things that are draining away? I have no control over this, I still get calls to come and play guitar, I still get emails to come and play ball, I still want to ride the Comet with my boys. These things may not happen. So what does one do? It's almost like starting over.
So I suppose I will just have to go and dream it all up again.

But I will not hide. I am Bald Ben. My view points, my thoughts, my opinions are all free for the taking. I stand behind what I say, that's why I say it. Otherwise this would all be a colossal waste of time.

Day 5: Alls well that ends well....well I still got MS

2008-09-26T14:59:00.000-07:00

Free at last! Free at last! Thank God Almighty we are free at last! (I realize that this might be offensive to some, I assure you I have the utmost respect for the Rev. Dr. Martin Luther King Jr. It just so happens his words ring true for a MS laden skinny, white, bald kid from Reading, PA. If he didn't want to be quoted he shouldn't have said such profound things.) IVIG is nothing to mess with, but it hasn't been so bad. As a matter of fact it's been pretty tolerable. The worst thing honestly has been the time that it takes out of my day. 5, 6 hours is a big chunk, and today it becomes a bit more complicated as I have to work. So my day started with my boys at 6:30am (not so bad when you have 11 month old twin boys. In the grand scheme of things this really isn't a complaint.) I got washed up, and made it to the infusion center just before 9am. I was a little late. I hate being late, it is one of those many pet peeves I have. If someone asks you to be at a place at a certain time I feel you should be there. I am not sure where or how this became a trait of mine. There is no one in my family who is particularly punctual, nor can I cite any sort of instance ( moving out of the way of falling piano, horrible car crash a moment after I pulled away etc.) that my life changed because I was late or on time. I just developed this behavior myself, what deep seeded neurosis preceded this is anybodies guess. That being said, I think the nurses were appreciative. They had 6 other people who show for an 8:30am appointment and to get them all settled and medicated at the same time can be a tall order. So in actuality I did them a favor. I maybe only one bald skinny guy, but I think the lull of at least one person is a breath of fresh air. See, this is the kind of guy I am. I look upon the hardships of others and try to make it better, try to lighten their load. I am a good person....Sorry lost it there for a second, what was I saying?

Right.

They got me hooked up by 9:30am and let the bag a flow. My buddy Joe was there again, Nina popped in a bit later, but the real interesting thing was there was a young girl and her mother there. Sadly the girl, who looked about 12 or so, was the one hooked up to the IV. The mother was cordial, but wasn't offering up any info on her daughter. I certainly was not brazen enough to ask, so I did what any polite, red blooded, American, male would do. I waited till she left and lead the nurses on a series of ambiguous questions in order to obtain the info that I sought. Turns out the young lass was on a drip of Tysabri, however she did not have MS. She had some other sort of condition, if I picked up my clues right, like Diverticulitis. Equally as horrible, however, I believe it is a very treatable condition. Don't quote me on that I am just pulling it out of my lesion laden brain. Getting more to the point, the reason I was so interested, besides the fact that I am just a nosy bastard who likes to stick his bald head into every last GDed thing, is that I assumed she had pediatric MS. This is a condition that is only now getting some press and being diagnosed.
I have long wondered about my MS and when it actually started. I have been wrought with mysterious ailments since the time I was a boy. These problems would often disappear, generally just in time for a doctors appointment. This is when I started to hear the phrase that pays, "It's all in your head. Just relax and you will be fine." I knew I wasn't fine, I knew there was a larger problem. (an aside here: If you ask any of my loved ones or friends, particularly my friends, most of them will tell you that I was(am) not fine. However most of these people are not citing any health problems but a slew of other unpredictable things that would either come flying out of my mouth or some sort of barroom antics that generally left mouths agape. Those were fun days.) I realize there is no way of going back to pin point when these things began. I also realize that there is nothing we can do if we are to find out that I have had MS since I was a kid. I do know that I had symptoms long before I was diagnosed. I have very distinct memories of someone pouring warm water down my back when I turned my head a certain way. I can go back as far as 2000 with this feeling. I have had problems with my bladder while in college. Let me just tell you its a tough conversation when all your boys are hanging out in your dorm room and you come in sorta perplexed from the bathroom. "What happens when you can't pee?" "Dude, seriously, were trying to watch X-files." (I know it's a dated reference....eat it would ya?) So just how far back does it go? Just till my late teens, which is when I started with Cluster headaches, or does it go back farther? I have had swallowing issues for as long as I can remember. It is my suspicion that MS has been present for longer than I care to think about. I had a neurologist way back, when I began having headaches. They did MRIs, always finding nothing. However, I think that this guy was an idiot. I should have known better seeing how I had to bring up the use of Imitrex, and try to convince him the codeine he was prescribing me was only making my headaches worse. This doctor was obviously of the school, "It's all in your head. Just relax and you will be fine." I suppose it would behoove me to get a copy of that file and have a medical professional look it over. Who knows what is lurking about that this Wonder Nuts might have missed. Sorry I got off point. So 6 hours later I get all the bandages taken off, which is the sweetest relief, I am sure you are all aware of the ungodly itching that such bandage glue will produce, the IV pulled out of my arm, and after a few thank yous/see you agains, I am on the road. A quick stop at home to change into my "straight” close, kiss the wife and children, you have to do that....Then back into the Yaris to give it the old college try on my drive to work. Now, I haven't talked much about my work. I have a post that will discuss it in further detail later, but my commute is just over an hour. It gives me time to think, listen to music, get pulled over by cops. Oh yeah, I got pulled over today. I knew it the second I buzzed by him. I'm no speed demon, but sometimes it gets away from you and this happened to be one of those times. I quickly took my foot off the gas, but it was to late, I saw him pulling out. So I got out of the passing lane and slowed down and awaited the inevitable. The inevitable came. The cop was actually real nice about it. I had all my info ready for him, he asked me where I was going, etc. He told me to sit tight and disappeared back into his car. I sat cursing myself and wishing I had just stayed at home. Whatever the ticket was going to cost certainly wasn't in the budget. I felt like a jerk. So options began to run through my bald head. What if I took off and made a run for it, once I got into work I can yell sanctuary and he couldn't touch me. No...I don't work in a church. I could try something with orphaned children. Ehh...the Yaris is too small for kids, besides he would give me another ticket for no car seats. I know MS. I got MS, this disease has got to be good for something, right? I could show him the band-aid from where the IV was, that'll get 'em. I'll try to walk a straight line for, that'll show 'em. Just them a knock on the window, and as I am about to launch into my most pitiful story, he smiles and hands me a warning and tells me to slow down, have a good day. Whew....I'll bet he smelled the MS on me. I'm here at work now. (yeah, I'm blogging at work. How you like me now?) I actually have a few things to do, so I can't be talking to you people all night. So, thanks for reading about my IVIG this week. I'll let you know if there are any results. Actually right now I am noticing that I feel a bit stiff. I am hoping this goes by the way side. I am sure it will, it seems to be par for the course with this stuff. Today I just didn't get to sleep it off. Seriously though, thanks for reading.

Day 4: Leave the Drama behind

2008-09-25T16:47:00.000-07:00

Okay so it turns out I was just being dramatic. Big surprise. So here's the deal, there are side effects to IVIG. They are flu like and they are cumulative. So the reason I felt run down and fluish is because I was run down and fluish. The nurse today looked at me like I was a few antibodies short of a full immune system when I told her that everyone had said there were no side effects. She let me know that maybe the first day or so, but after it gets into your system there can be some ramifications. After all you are inundating your system with a bunch of foreign invaders, it only stands to reason that there is gonna be some sorta backlash. Hmmm....anyway, The aseptic meningitis is a possibility, however it is a remote one. Leave it me to be a reactionary.

So day four has come and gone. I decided to not be so antisocial today and sat in the "common" room. It was a large room with 6 IV stations, and a common TV. Through out the 6 hours most of the seats were filled, I was by far the youngest person there. Everyone was real pleasant, and all but one had full function. So I guess that's a bit reassuring. The only real downside of sitting in the common room was that I didn't sleep and while I didn't sleep my new buddy Joe enjoyed an episode of Jerry Springer.

I haven't seen Jerry Springer in quite a few years and let me just tell you that the show does not age very well. There were midgets (little people, which ever), badly tattooed brothers fresh from prison throwing punches over the women they say they both love, strippers dancing at the "pole" that just happened to be there, and wait for it wait for it......Sheep. Yep, dudes who like sheep was one of the topics. What more needs to be said? In a time of foreign war, economic crisis, heightened tensions with Russia, of course the American people need a guy who likes sheep on day time television. It's one of those things that lets us know that no matter how bad, how ugly times get at least their is a dude who likes sheep. I suppose it makes one wonder....can't we all just get along?

But I digress. Besides the minor side effects and the length of time I need to sit, the IVIG, isn't so bad. Far more stomachable than the Avonex. I had a hell of time with Avonex, they kept telling me the side effects would subside and 6 months later I was still a mess for a few days a week. I had to move on. I don't want to cast any dispersions on Avonex. I know that it works very well for a lot of people, I unfortunately was not one of them.

Anyway, IVIG, the greatest side effect I am coming across is the cost. As the very friendly nurse told me, "that's liquid gold we're draining into your arm." This was of course after the 9 attempts at finding a vein, but I'm not bitter. $5,000.00 per bag of IVIG. If you are doing the math that would be $25,000.00 just for the medicine this week. This of course doesn't include all the other fees that will undoubtedly arise. They tell me it may cost up $100.00.00 for five days of treatment. Seriously. In the immortal word of Bono, "The rich stay healthy and the sick stay poor."

Now most people look or think that I am nuts with such thoughts, "What are you worried about the insurance will take care of it." I hear ringing in my ears. Oddly enough I don't trust insurance companies. They are an industry to make money, helping people is a side effect. So, I started my job only 6 months ago, I only started on their insurance 3 months ago. This is the first time I am really taking it out for a ride. In the immortal words of Quint from the film Jaws,"Wait till the taxidermy man see what I brung him!" He of course goes on to get eaten by the shark. I do not want to get eaten by the shark.

On to the last day tomorrow and onto the future.

Day 3

2008-09-24T15:43:00.000-07:00

I'm super beat again today. I actually just got up from a nap. This makes me a bit worried. Now I could just be being a reactionary here, and I sure I am, but after looking into the symptoms of that aseptic meningitis thing the nurses keep warning me about a bald guy starts to wonder. Actually a bald guy starts to get worried. I'm super super beat, have a slight headache, and am hoping that I am chilly just because it is a bit chilly outside. I'm just being a reactionary right? right? I told you that the internet can be the greatest resource for hypochondriacs, and hopefully I am being a hypochondriac here. I'll keep you updated. Cross your fingers. I am just being dramatic...I hope.

Day 2: no oats, maybe some pretzles

2008-09-23T14:53:00.001-07:00

Day Two: pretty much the same thing. Although the boys decided today was a good day to sleep in a bit, and besides a little blip at 4:30am they slept through till I woke up at 7:30am. Now, your infant sons sleeping all through the night is generally a welcomed thing, I was really counting on their normal 6am chow call. Making the fact that I opened my eyes at 7:30am a bit of a problem seeing how it was my planned departure time. I guess I should stop using my children as an alarm clock. They are nowhere near as reliable as I hoped. Besides the clock I have is digital, my kids are not digital.
So I jumped out of bed and ran to the bathroom. Well, in a perfect world this is what I would have done. In reality it was more of a quick hop onto my feet and as I lifted my leg to make for the bathroom I realized that my left leg was not ready to hold all my weight. I mean, why would it? Who am I to expect such a thing? After all my leg was tired too, it had just been in a nice cozy warm bed and I am supposing that it wanted to stay there just as much as I did. Alas I had to be the one in charge and get ALL of my body parts to be moving. You see this doesn't work so well if only a handful of you want to function at the same time. I find the best results occur when we all work as a team to accomplish the task at hand. So I placed my hand on the wall, "See," I said in a pseudo mocking tone,"left hand is working pretty well, at least he's giving it the old college try." I think being compared to the left hand might have done the trick, I mean the left leg is no dummy and he realizes that the left hand is vilified in many cultures. It wasn't long after that, that left leg began to cooperate and we were all able to make it to the bathroom. A quick wash up, toothbrush, etc (I mean you gotta smell half way decent) and low and behold I hear my boy Emmet up and at 'em. Your about 45 minutes to late kid, but I'm glad you got a good nights rest. Then down the stairs to kiss the kids, the wife, and out to my trusty steed Toyota Yaris to take me to the infusion center.

Once at the center it was pretty par for the course. I was in a different room this time, but it was pretty comparable to yesterdays. This one didn't have as much indoor/outdoor carpeting but the chair actually seemed a bit more comfortable.
The other friendly nurse came in flushed my line, luckily all was in good shape. Apparently there was a bit of apprehension after yesterdays fiasco of trying to find a vein. Both very friendly nurses were relieved. I suppose so was I.

They hooked me up by 9:40am. I asked about the lag in time from my entry to the actual IV beginning and the very friendly nurse explained to me that they actually have to mix the solution when I get there, today some of the solution wasn't dissolving as quick as they would like. I figured it was a good enough explanation. I got comfortable in my chair and they gave the prerequisite medications that some how I was never told I needed to take. Something I forgot to mention yesterday was that they have you take some Tylenol and Benadryl before they start you off. There are a few side effects that everyone else forgot to mention to me the 12 times I asked about them like a rash, headache, or aseptic meningitis. Yeah they seemed real concerned about the meningitis. Although somehow I don't think either the Benadryl or the Tylenol are going to really stave that one off.

So they started to drain the bag into my arm while I deftly killed today's Philly Inquirer crossword puzzle in like 20 minutes. This turned out to be a good thing, seeing how as I picked up the Metro and started their puzzle my brain began to malfunction a bit. I just couldn't concentrate on it. I mentioned my lack of concentration to the very friendly nurse and she pointed out that the Benadryl may have begun to kick in. I like that answer as opposed to the alternative (and obvious) that I just didn't have the intellect to conquer that puzzle. I'll have to revisit it later. I can't let that bastard puzzle get the best of me. I can hear it laughing at me from here.

This room, like the other, had a TV and also like the other room was connected to Direct TV. I have cable at home, and for whatever reason this Direct TV thing has always confounded me, channels that start in the 200's, lists all kind of great shows that are unavailable to me. Makes no sense. Yet I seemed to get the hang of it and yesterday as I am going through the guide to see what I want to watch I come across information sweeter than free money (well maybe not that sweet, but pretty sweet) Twin Peaks will be on at 1pm. Twin Peaks? On TV in the new millennium? Finally a clear answer to all of this, this is why I have been given MS, to lead me here, at this time, to receiving a treatment that would present me with this channel lineup, so I was able to watch the greatest television program since the Twilight Zone. Well my day was planned, a few crossword puzzles, a quick nap, and then onto the Chill channel to watch the great Dale Cooper lead the cast of quirky charters through the unsolved murder of the towns head cheerleader with the double life, Laura Palmer.
1pm rolls around and I hit the button for the Chill channel, I am sure you see where this is going, channel unavailable. Unavailable? How rude is this? Not only have you given me an incurable disease you pull this crap on me? Wow, this really takes some stones, if you weren't omnipotent I think I'd ask you step outside, but seeing how you are omnipotent I'm not sure where outside would be for you or where you would stand.
With my dreams crushed I talked with both very friendly nurses for a bit, took a look at a crossword puzzle, and by 2pm it was time to go home. Day 2 finished.
So in the immortal words of Spec. Agnt. Dale Cooper: Gentlemen, when two separate events occur simultaneously, pertaining to the same object of inquiry, we must always pay strict attention.

Phase one: In which Doris gets her oats...or her IVIG

2008-09-22T18:26:00.000-07:00

I'm beat. I'm gonna try to keep this short, the key word here is try. It doesn't seem that economy of words is my strong suit. Sorry.

Anyway, its been a long day. I didn't get home from work the night before until 1:30am. I had to unwind a little so I didn't hit the sheet till 2:10am. Then I had to be up and at 'em at 7am. (And I'm surprised I'm having a relapse....) I got to the infusion center just at 8:30am and they showed me back to my room. Take a look, it was actually pretty comfortable.

That chair is huge, I am a small guy, you could of fit three of me on it. So, the nurse comes in and she is beyond pleasant. She set me at ease very quickly. I don't know if I looked nervous, but I was....a bit. Not about the needles or anything, but they were about to pump me full of God knows what and who knows what my body was going to do with it. So she walks out and grabs my chart and sees my name and says, "Are you related to Beverly?" I thought on it for a second, the name Beverly didn't ring any bells. When suddenly it dawned on me that my Aunt Faye's first name is Beverly. She, for whatever reason, hates it and goes by her middle name. So it caught me by surprise that someone would call her that. However it still struck me as odd that my nurse might know her. We were pretty far away from where she and my Uncle live, and besides that she has been incapacitated by ALS for the last six years. I tell my friendly nurse this and she confirms that it is in fact my aunt she is talking about seeing how she worked at the hospital that my aunt sought treatment at. The world gets smaller everyday.
This, to me, was kismet. For whatever reason God, fate, or dumb luck had brought me here, under the care of this woman, and I knew I was gonna be alright. I have always had a great respect and love for my Aunt and Uncle and the fact that they were brought up out of the blue, destroyed any sense of nervousness that I had.

Well, now is where things get interesting, and my friendly nurse is glad that she knew my Aunt. Apparently the course of Salumedrol that I recently took has the tendency to make your veins a little less veiny. My friendly nurse had a little trouble sticking me. She was able to get under the skin, but then the vein would roll away. I watched her do it, 6 times, and it didn't matter how she tried those damn veins were just not cooperating. I took it in stride, I mean what else was I to do. Then my friendly nurse asked another just as friendly nurse to come in and "stab me". While the verbiage was a bit disconcerting I appreciated that she was looking for other avenues. The other friendly nurse came in and she was able to get a vein, after 3 sticks, but she got the vein. It became kind of comical after awhile. Again this could all be a different story if the friendly nurse didn't known my Aunt, but lucky for all of us she did.

They started the IV at about 10:30am.
Again the room was comfortable, there was a TV, I had some snacks, and my newspaper. I worked on the crossword puzzle a bit, read through mostly bad news, took a good two hour nap, watched Cash Cab, and some other TV. The drip itself made me a bit light headed and like I said I am pretty tired, but all in all it was a non-event. It just took a long long time, 4 and 1/2 hours. Although I got some kicking indigestion coming on right now. I'm gonna have to go find some tums. This is a relatively uninspired post, but I'll drop some serious knowledge tomorrow.

Tomorrow, the future, and IVIG

2008-09-21T14:23:00.000-07:00

It would appear that I have been quiet here as of late, but in reality I have been hard at work on a couple of posts that I just don't feel make all that much sense. I'm sorta of obsessing. Replace obsessing with just being ridiculous. Go figure a guy who spends most of the day wishing for unquestionable proof of Bigfoot being ridiculous. I want to be clear and concise for my those of you who read my mindless twitter. What is a Bald guy to do? "Grow some hair." you say. Yeah, thanks, I wish I could.

Anyway, I've been feeling okay as of late, not great, okay. My eyes are still really out of whack and the pins and needles are pretty persistent. The limp in my left leg comes and goes, mostly comes when I go, and tomorrow starts the great IVIG experiment of 2008.

I'll be honest I'm a bit apprehensive about the whole thing. It seems there is very little on the internet about the treatment in relation to MS. It is a controversial course for my disease, so they say. Not because it could hurt, but they don't know if it has any real merit.
Well I figure like I tell my bartender, I'll try anything once. I am then of course reminded that I don't drink and I should stop telling my wife to "put it on my tab". She's not a bartender, nor a server of any kind, and quite frankly she is tired of me never paying my “bill”. Right, well they tell me that it is worth a shot. Both of my esteemed neurologists seem to be in agreement on the topic. The other upshot is they tell me that there are very few side effects, but according to the internet that isn't exactly true.

Allow me to get off topic here for a minute and let me tell you how much I love the internet. If you look long and hard enough you can find anything on here. You need to prove a point just keep clicking and eventually you will find some sort of irrefutable supporting evidence. The great thing is that anyone can write anything carte blanch on the interweb. The terrible thing is that anyone can write anything carte blanch on the interweb. With the advent of Wiki and similar sites, historical fiction just got a new place in the roster. Hypochondriacs unite! Never was there a more comprehensive catalogue of ailments and disease right at your finger tips. Furthermore, that proof for Bigfoot, I think I just got a lead, but I'm off topic, sorry.

Anyway, tomorrow at 8:30am I have a date with a needle and a large bag of antibodies. I pasted some info below from the MS Society web page. Below that I have pasted some info from some other page, that I'm not entirely sure I trust but the crazy green background and 80's style headline font really screamed for inclusion. (I just included the info. You will have to dream about the font)

(from the MS Society)
Intravenous Immunoglobulin (IVIG)

Immunoglobulins are antibody proteins that are secreted by the white blood cells called B-lymphocytes and by plasma cells in response to the presence of a substance that provokes an immune response. This substance is called an antigen. Intravenous immunoglobulin G (IVIG) is a pooled human immunoglobulin G (IgG) that is presumed to modulate the immune system. It has proven useful in the treatment of a number of autoimmune diseases, but its role in the treatment of MS remains uncertain. Different trials of IVIG in different types of MS have produced variable results:There are some data that suggest that monthly IVIG may be beneficial in reducing relapses and/or inflammatory lesions on MRI in some persons with relapsing remitting MS. In other studies, IVIG was not shown to reverse deficits or slow progression in persons with progressive MS. A small pilot study has suggested that intravenous immunoglobulin (IVIG) administered for five consecutive days during the first week postpartum, and at six and twelve weeks thereafter, may help prevent postpartum relapses. Another small study in people who have experienced a clinically-isolated syndrome indicates that IVIG may delay the onset of clinically-definite MS by prolonging the time to a second attack. A recent meta-analysis of the various studies that have been done with IVIG concluded that it may be a valuable alternative for the treatment of relapsing-remitting MS (e.g., for those individuals who cannot or will not take one of the approved injectable medications), but cannot presently be considered a first-line treatment. Additional studies are needed to establish the role of IVIG in the management of MS, and to determine the ideal dosage level.

(from the crazy 80's style website)
What are the common side effects OF IVIG?

IVIg at times causes patients to get a headache, which is more common in females with a history of Migraines. after IVIg infusion some Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. IVIg may also cause to patients get a rash and doctors recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies and some may result in odd reactions. Kidney failure may result after IVIg if less fluids are given. Stroke or heart attack can happen after IVIg if the IVIg solution is pumped in at a fast rate.A severe headache with a stiff neck after IVIg may be due to aseptic meningitis.Variation in blood pressure, shortness of breath, back pain can also be seen after IVIg infusion. Serious conditions like encephalitis, myocarditis have been seen. (like I said you can find anything on the internet)

There you have it in a nutshell (or an IV bag whichever you prefer). I will have a lot of time on my hands this week as each treatment takes at least 4 hours. So check back I hope to update about the exploits of a Bald guy, some antibodies, and proof of Bigfoot.

I Am Not Afraid of You and I Will Beat Your Ass.

2008-09-12T13:38:00.000-07:00

While perusing all the music blogs and sites that I digest while diligently at work, I came across this little tid bit.

http://www.yolatengo.com/news_0908.html

Let's talk about Yo La Tengo for a second. If you are not familiar, you should be. If you are and say you don't like them, you should go listen to them again because there are about a thousand other bands you do listen to that have been informed by these guys. If you do like them, good on you.

I mean what else can be said about a band that was chosen to back Ray Davies on tour, recorded a song with Danile Johnston (who sang over the phone), have sited influences from the Velvet Underground, Love, and one of my all time favorites the Soft Boys (again if you are not familiar with this music you should be, not only to get a better picture of the guy you're reading, but I mean, you really owe to yourself. You will be a better person in the end, I promise.) and if that's not enough they put out a record in 2006 with one of my favorite titles ever.

I Am Not Afraid of You and I Will Beat Your Ass

They played my college in 1998 along with Sonic Youth and KRS ONE . Alas, I was not there that day. I was super bummed I missed out on it, but I was in Italy, so I wasn't that bummed.

Not only do they make some of the most literate and informed rock music of our age, they have a bit of a heart too. I'm not sure what the bands connection to MS is or if there even is one, but hey I would imagine every little bit helps.

Although, truth be told I don't know how much I really put into these sort of walks, rides, jumping ropes, pie eating, doing it till it hurts sorta things. The spirit is great, I love that there are people out there who want to do something, but I just don't know that this is the way that we are gonna cure anything. We may even end up creating new strains of virus with all the blisters, corns, gout, and athletes foot that these events undoubtedly promote.

Furthermore, I really wonder where all this money is going. I have some friends that have done these things "for me" and it is truly appreciated, it really is. However I did not see one dime from any of these walks or bike rides. What's the deal? I got the damn disease, figure there should be something that I get out of it. Collecting all this money for "research"? How about researching the cost of my medication or the fact that I still want a flat screen TV. Let's do this: every walker, biker, pie eater, etc who is associated with a person who has MS gives half of what they earn to those of us less fortunate. Sounds fair, right?

Go ahead and ask me again if I want to walk a few miles to cure my disease, the answer is still no. So cough it up walkie, I want my cut.

Seriously though, thanks Yo La Tengo, and everyone else involved. It may not be making a tangible differance to us, but I guess there is a lab somewhere and some rats that are real appreciative. (well, maybe not the rats.)

Have Mrsa on me.....

2008-09-09T17:38:00.000-07:00

In starting this blog I figured I would post once a week or something, drop a few jokes, make a couple people laugh, throw a few commas in the wrong, place. I did not however expect to be able to blog everyday on something else that has gone wrong with my body. Amazing, since I have started this blog I have entered my second relapse, had difficulty with scheduling my MRI, allowed the world to ready about my slow bladder, and now I get to blog about the last 24 hours that found me in two different hospitals with news that I am still trying to figure out if it is good or bad.

So we need to back track just a bit. For those of you who have never had the pleasure of inundating your body with Prednisone know that it is not pleasant. Not only does it do any number of God awful things to your appetite, sleep patterns, blood pressure and to your general disposition, but it also destroys your immune system. (This is actually the desired effect, seeing how MS is a dysfunction of the Immune system.) However as I stated in an earlier post the steroids give me a bit of that teenage feeling and those unsightly blemishes that lead you to adult hood have appeared all over my body. It's really kind of gross, however it's the least of my problems these days.
So last week one of these blemishes popped up on an unusual place....My elbow. Have you ever had a zit on your elbow? It's not very comfortable. So I did what any God fearing, red blooded American would do. I popped it. It wasn't near as easy as it looked, and to save you from the gory details, there was a little blood. Although nothing I thought twice about. I went on with my week. Then, low and behold, another one popped up on the same elbow. I'll be damned! I popped that one too. But as they say, "no two go alike, some yell and scream, some go quietly, some explode, some implode, but all will try to take you with them." This one was no excepetion, it was a tough critter, and there was a little more blood. I wasn't happy about it, but truth be told I have popped a few zits in my day and generally there was a little bit of blood.
Now flash forward to yesterday morning and while I am in the shower, I inspect the elbow of puberty, as I call it, and wouldn't ya know it a third zit is popping up. The other two are still trying to heal, so I figure I probably shouldn't touch this one. Finish my shower, make sure it isn't 1992 seeing the state my skin is in, kiss my children and wife goodbye, and go to work (I promise I got dressed in there as well. I did not go to work naked). To be honest it's a bit uncomfortable when I get to work, but hey what isn't uncomfortable at work? Anyway, I get home take off my well pressed button down shirt to play with my sons before they go to bed, and in doing so I notice a long red line that is traveling from my zit laden elbow up into my armpit. Uh oh, this can't be good.
After a short consultation with our resident Doctor/Nurse, Aunt Laura, I am encouraged to get up on my trusty steed (Toyota Yaris) and ride to the Emergency Room. Which I do.
As I am signing in the nurse asks me what brings me in tonight. I raise my arm as I say,
"well I got this..."
"oh, you got an infection."
About a half later I am sitting behind a curtain hooked up to an IV of anti-biotic. As they discharge me the Doctor makes a side comment that perhaps it is MRSA.
Now, I know very little about this MRSA. I do know that it isn't good. I voice my concern to the doctor and she tells me it is nothing to worry about, she sees like 8 or 9 cases a day. Oh, that makes it better. If you notice to the right in my daily prescriptions there are two new entries. They are temperary and will hopefully stave off MRSA, Ebola, or any other concoction of blood poisoning that my ailing anti-bodies decide to throw at me. The red line has all but dissapeared, all the anti-biotics seem to be working. The zits however have not. I'll take the good with the bad.
All in all though it could have been worse. The total time I was in the hospital was just over two hours, I met some nice people, like the lady next to me who had a terrible headache (to which I can relate) they prescriped her some morphine. (I was never given morphine. Why was I never given morphin? ) Then a little while into the intial work up her husband seemed to remember that, oh she was hit in the head with a baseball bat at 7:00pm tonight. Like I said, some nice people.

So on to today, another day another hospital, more good news / bad news. So I go downtown to the good Doctors office at the esteemed hospital, I make sure I am super early as I screwed up last time I had an appointment. I thought that the appointment was two hours later than what it actually was. The good Doctor was cordial about it, but I do not think he was amused, but I digress. The waiting room is cheery as I have said before, but today it is packed with people. Some of them are in pretty bad shape, others look like this might be their first appointment. I can only wonder when they walk out how their out look on life might be skewed.
I sit and read an old issue of Time magazine (still trying to figure out this whole Georgia/Russia thing.) but can't seem to concentrate on the words, could be the MS could be the impending results. The good Doctor comes out and takes me back to the room, we have a conversation about all the things that have been going on, the elbow situation, the flare up, etc. Then I have to go through all the tests that someone has designed to test the acuity of my disease: The feats of strength, walking straight lines, jumping on one foot (if you have MS I am sure you have done all these. I think one day we should have some sort of MS Olympics.) Then the good Doctor disappears to go have a look at my MRI. After about 15 minutes he comes back in the room. He can see one new lesion, a little bit of growth on the old ones, but because of the Prednisone treatment it is hard to tell what kind of activity the flare up is causing or has caused. While the good Doctor does not seem to be upset about it, it does worry me, seeing how it's my brain and not his.
He tells me the IVIG treatment coming up is a good idea, and that while he isn't unhappy with the efficacy of the copaxone it may soon be time to talk about different medication. This means moving to tysabri, as I have already tried Avonex and had a horrible time with it. Who knows? That's all down the road a bit. For now, one new lesion, a blood infection, new anti-botics, and one of the greatest record collections in Philadelphia. (My mother told me to always find a silver lining. I love my records.) We'll make it through. It's the only thing we can do.

P.S. I'm not sure if this post makes sense. I should have waited till tomorrow to write, I am real tired and my choices of words along with sentence structure just don't seem to be firing right now. I wanted to wirte though, there are a few of you reading and I wanted to make sure that you knew I'm okay. Thanks for reading.

Public Discloser

2008-09-08T11:48:00.000-07:00

Not to be gross or crass here, but I go to the bathroom fairly often. Chalk it up to the MS slowing my bladder down. My urologists calls it something cute like incomplete voiding. Sounds more like Star Trek than medicine, but hey I always loved a good tribble. Although I am not peeing tribbles, no nothing hairy here, just your average refuse passed through the kidneys. Anyway, the reason I write today is to give you all a little thought next time you head into the public restroom.

As I have stated here before I am currently a bit under the weather with some sort of relapse. I have a slight limp on my left side, and since the relapse, said limp, is much more pronounced. In trying to compensate for this limp, or forgetting to compensate for this limp, which ever, I will often list to my right side. Perhaps bee lining for a wall (this always gets the co-workers wondering) or just looking like I had one too many cocktails at lunch (this generally gets a nod of approval from the co-workers, strange.). Either way it becomes rather precarious when I enter the restrooms.

Now picture it if you will, (gentlemen I realize that you are fully aware of how a men's room is set up, however like snowflakes there are really no two alike, and ladies I'm sure you can use the visual.) here, where I work, the men's bathroom is quite vast. You enter with about 10 hands free sinks split up on either side of you, those intense mirrors so that you can stare into infinity for a good long while as you wash your hands. Then you can pass (get it pass) into the area where you do your "business", 15 urinals on your right, and about 15 stalls on your left. Now this is where the interesting thing about having MS plays out.

At any given moment there are gentlemen using the "facilities". Some at the urinals, others in the midst of lets just say number two. Now, I am aware that my limp will take me toward the urinals, I however, need to judge just how close I will come. You see, I could end up by no real action of my own just bee lining to my right hand side. This could be a problem as most guys would find it rude, inconsiderate, or just down right icky if some bald guy would come up behind them and give them a little goose while they were in the midst of lets call it number one. Furthermore, it isn't all that easy to recover from listing to your starboard side and I would inevitable take out a few more fellow urinators as I tried to regain my balance. In order to protect myself and the gentleman with their valuables in this vulnerable state of exposure, I try to over compensate by shoot far left. This leads to another problem.

Now I am up against the stalls with guys in there doing God knows what. So not only do we have the obvious olfactory problems to contend with, but now I might look like the odd bald lurker. The weird guy who is in the bathroom often and likes to creep up on dudes who are.....lets just call it in a state of disrepair. Not to mention if I get side tracked looking for a urinal to use and somebody opens a door to the stalls in front of me. SMACK!!! Sadly it's almost happened a few times.

I write to tell you these things because these are the trials and tribulations of those of us with MS. I'll bet you never thought of it like this. God knows I have. Anyway, it's on to the good Doctor tomorrow to get the results from this weekends MRI. Hmmm, I gotta go use the men's room. I'll bet you saw that coming. Unfortuanatly it's true.

p.s. the above picture is not of my work, I figured it would be just as strange to have a bald guy in the bathroom taking pictures.

Addendum: The Helpful Hospital

2008-09-06T15:10:00.000-07:00

Well, after all that cyber bitching it all actually worked out.
Friday, while at work, feeling pretty good, (until about noon, then I got really dizzy and just tried to stay sitting) I made another call to the good Doctors office. I was still kinda hot from the day before and I was ready to take a few verbal jabs over the phone. Called once, got the machine. I decided not to leave a message, I saw how well that worked out the day before, so I called back a few minutes later. Success! I actually got a real live person on the phone and it was the good Doctor's secretary! Score! I jumped into my story feet first and before I even finished the first sentence I heard, "Ben, of course, we want to get this all worked out." I was a bit taken aback, I mean, I want to believe in the best of people, I would like to be a trusting man, but as they say fool me once.....Anyway, she got the schedule people on the phone, and unfortunately they weren't able to help me. In their defense they tried, but their hands were tied. I began to lose heart. That whole trusting people, beliving in the best starts to fade, but then the good Doctor's Secretary called in the big guns. She decided to go right to the top and call the women who actually schedule the MRIs. Now I knew we were gonna get somewhere. The phone rang, it rang again, it rang a third time, and then...an answer machine. Oh the humanity! Like getting my legs cut out from under me, sand kicked in my eyes, and told I have incurable disease. Oh wait, um, already happened, minus the sand. Anyway, had I gotten my hopes up for nothing? Here I sit with dreams of MRI in my mind and all I get is this rolling office chair and my bony butt. However, the good Doctor's secretary still seems hopeful and leaves a message with my cell phone number and tells me they should get back to me soon. We hang up, and honestly I feel a little hung out to dry. I go back to my desk and surf the internet some more.
Incidentally I do a lot of this at work. I mean I work my behind off, but really only on certain days. So I'm not sure exactly why I have a full time job. I don't want to seem ungrateful here, I mean who gets a job like this in these economic times, but I mean seriously maybe we are in tough economic times because you're giving guys like me cushy jobs in middle management, but I digress.
About an hour later I decided to give them a call back on the number that the good Doctor's secretary has supplied me with. No luck, back to the machine. I don't leave a message. I figure no reason to seem desperate, or at least to remove all illusion of being as desperate as I was. about 20 minutes later the phone lights up and low and behold its the girls from the MRI scheduling department. Apparently they are also aware of my plight and are on the case to rectify the wrongs that have been committed. Wow, what a difference a day makes!
Well, the MRI girls take a look and see that they have a 12:40pm appointment on Saturday. Perfect I say. Then they get into the nuts and bolts of it, insurance, prescription, etc. I feel that old nagging feeling of disappointment creeping in, or it's just the pins and needles in my hands and feet from the MS. Either way I'm not happy about it. Just as I am figuring they will say sorry we will see you on the 17th, I hear, "okay were gonna have to give you a call back, I'm gonna need to call your doctor and insurance company. I have put you in for this appointment regardless." Then I heard it," Don't worry we'll get this worked out for you." Wow what a roller coaster of emotion. So through out the day my cell phone rang, the nice women of the MRI department giving a call just to let me know at what point of the process they were in.
"Got your prescription...We are in the process of getting a pre-cert...you should call your insurance company they have your name spelled wrong.(figures)" Helpful things like that. All in all it was a pretty great experience.
So here we are Saturday evening. I have been to the hospital had my MRI. Again all in all a good experience. It being a Saturday there were very few people around, only one kid and he was getting in trouble by his grandfather, so he was in good health. I signed in, and still had my paper work from the other day all filled out, handed it to the lady who said, "Oh my God, this is wonderful, I could just kiss you." Then she looked at me and kissed the air, simulating that she was giving me a kiss. I have to say it was a surprise to me, but better than say her taking a swing at me. Although, I'm sure if her man had walked in at the time he might have taken a swing at me.
Anyway, then they walked me back to the MRI area, which is where I have to get into those flatering hospital gowns. For whatever reason they make you get in two of them: one forward, one backward. Niether of them seem to really fit or tie properly, and as I exit the dressing room and take a seat in the MRI waiting room one of the four women sitting there kindly lets me know, "if you are cold there are lots of blankets just over there on the shelf." So I sat with the nice ladies and talked. Turns out two of them were from the greatest place on Earth, my home town, Reading, PA. (there will be many blog posts to come about the greatness of Reading, PA. Yes, the Railroad space on the monoply board.) The other lady and her daughter spend three months out of the year in Disney World. It was a very informative wait.
Long story short they take me back set me up in the machine. I ask for some extra padding under my head. I don't know if it is the lack of hair or what, but I always seem to get a terrible pain in the back of my head, then a knot for like two days. I am trying to avoid this. The first hour isn't so bad. I fade off, sleep, in and out, but the second hour, after they inject the contrast it isn't near as comfortable.
I guess sitting still for that long starts to ware on a bald guy and I become very much aware of the pain in the back of my head, I guess the extra padding, read folded towel, isn't really doing the trick, but I can't move my head due to the actual reason I am there. Then my face starts to itch, again very little you can do about it because of the reason I am there. I can however move my hands which have fallen asleep, but that is easy enough to shake off. Truth be told before I know it I am being pulled out of the machine, and they send me on my way. I ask them if they know what it is like out side, one of the ladies says, "hellish." Hmm, that could mean any number of things when you live in Philadelphia. Although, it seems the portion of hurricane Hanna that is suppose to hit us has hit. I make it to my car, pay the $9.00 to exit and piolt my little Yaris throuh the city of brotherly love, back to my home. I think I hit a lull in the storm, it really isn't that bad.

I'll bet the nurse has the answer to my crossword puzzle too.

2008-09-04T22:05:00.000-07:00

(be forewarned, this is a very long post. Be prepared, eat lunch, make sure you have a glass of water, get oxygen if you need it, most important tell a buddy where you are. If you get lost you may never be found. I just want to make sure that everyone is safe.)

So, in starting this blog, I really wanted to make sure that there were some informative things, interesting tid-bits about MS and how I deal with it. I did not, by any means, want to be a cyber-bitch. I have been looking around at some other blogs, and I have found some of them are just that: cyber bitches. Now I can understand that MS or any other disease, illness, shortcoming, life difficulty, or stubbed toe is hard to deal with on some level, and yes sometimes we need to just blow off steam, and for lack of a better word, bitch. There are all sorts of ways to do it verbally, signs on the side of the road, classified ad in the back of the city paper, or cyberly. However sometimes is the key word here. I mean, let’s keep it together people. That being said please allow me to bitch.

I was seventeen years old the first time I was pushed into a MRI machine. I was sure that once the films were inspected I would be rushed to the nearest hospital, I knew I had a brain tumor.
A few weeks before I had awoken in blinding pain, my right temple was throbbing, and the second I was able to concentrate on a feeling it peeled away to reveal a new demon, new form of injury. It was December of 1994, I was a senior in High School.
I remember the moon fell through my window like someone had lit my room for a movie. In my memory the light was so white, and the moon hung full in what seemed to be a starless sky. I moved down to the foot of the bed, and let it bath my throbbing head. In my desperation I had hoped that the moon might be able to soothe whatever was broken. I don't know if it was the moon, but I fell back to sleep, and woke the next day hoping that it was just a dream.
It wasn't. The headaches kept visiting me. First every other night, then each night, then in the morning, until there was nothing I could do, the headaches came whenever they wanted. The doctors were baffled. Like so many of us out there I bounced from one doctor to the next with little results, finally one of them said, "Let’s get an MRI."
There was no brain tumor, there nothing actually. The films came back normal, and I was left where I started. Blinding, uncontrollable pain, and no direction to throw a punch. It was sometime around then that I heard a phrase that haunts me to this day, "It's all in your head, you’re just stressed out. Just relax and you'll be fine."
I'm serious! In fourteen years more than one doctor has said this to me. No matter how I pleaded, no matter how well I understood that my body wasn't like the one I was supposed to have. But what did I know? After all they were doctors, I was just a kid.
After about three months the headaches disappeared, I began to believe that maybe I was just stressed about getting into college and finishing up High School. I moved on, thankful that I had made it through, yet still wary of just what had happened.
To make a long story short the headaches returned every year since I was seventeen years old, once a year for about three months. Somewhere in the last fourteen years, someone realized that the condition I had is known as Cluster Headaches. I will spare you the details of the condition, there is a link to wikipedia's informative page on the right, but know they are not pretty and a large portion of the people that deal with these headaches, also known as suicide headaches, don't make it through. That being said, I will not be one of those people, although, I truly understand.
So, eleven years later and at least one MRI for each of those years, and I start to exhibit new symptoms. Numbness, lethargy, dysfunction of my hand and fingers, then my speech started to slur. I was unlucky enough not to have health insurance at the time, although I was lucky enough to have a great doctor who wasn’t going to say, "It's all in your head, you’re just stressed out. Just relax and you'll be fine." Although I have a sneaking suspicion it was in the back of his head.
Truth be told I was stressed out, I did need to relax, but I knew this was something more. I had a new problem. Through a series of heroics of said doctor he got me an MRI sans payment, and in those films we saw what I had always suspected. Well, not a brain tumor, but something almost as devastating: Lesions.
Flash Forward to yesterday, I have been diligently fighting MS, still getting the Cluster Headaches, and getting at least two MRIs a year. Yesterday, I was supposes to go for my bi-yearly check up. It just so happens that it falls during this time of relapse, I would suppose that some would say it is "good timing". I would have to say that that person is an idiot. Sorry, no need to call names, there will be plenty of time for that later. However, there is something to be said for fate or kismet or whatever you want to call it.

Now here comes the bitching, feel free to look the other way.

I again have been blessed to live here in Philadelphia, (although some feel it more a curse) and by living in Philadelphia I have one of the pre-emanate medical facilities at my disposal. Furthermore, luck would have it, my wife’s cousin interned with one of the pre-emanate MS doctors in the country. So if we do a little addition here, pull a few strings, grease a couple of palms, and viola Bald Ben becomes a patient of said institution under said doctor. (This isn't the bitching part, just a little background so the bitching is that much sweeter)
Now this facility has all kinds of things that your average doctor doesn’t have access to, at least this is what I am told. In addition, my doctor has invented his own protocol for the level of imaging he orders for his MS patients. Granted the actual MRI takes almost three hours, but the end result is worth it, I guess. (that was a little bitching, but I'm about to get to the real bitching)
So, here we are September 3rd 2008. I took the day off from work, woke up a bit earlier than I really felt like it, kissed my wife and my baby boys goodbye and jumped in my Yaris and headed down to the hospital. This place is huge, all kinds of different buildings with names of donors that I am sure could buy and sell my disease at will. The bewilderment that already exists in my head due to the MS and my current flare up only add to the confusion that is this hospital. In fact even if I was totally healthy, employed Marco Polo and maybe a few sherpas I might be able to make it to the appointment on time. However, by dumb luck, I find the door that I am supposed to enter, only to see a sign that reads:

All MRI registration has been moved to X building on the ground floor.

WHAT?!

They sent me a paper that said to come here. Someone put it in an envelope, affixed a stamp, dropped it in the mail, and sent it to my house. These directions that tell me to come to this door! What's more is that I stopped and asked no less than two people about where it was I needed to go, and no one clued me in on the change. I'm so tired, walking right now, aimlessly, is not in my best interest. But I turn around, walk what seems another half of a mile, ask one person, and by what would seem to be pure chance, stumble into the registration area with three minutes to spare. I sign in and take a seat.
Needless to say, I find the hospital a bit depressing. Not only are there lots of down trodden people in the waiting room dealing with troubles bigger than mine, but there are also a ton of kids there. One boy I am sure is there because he needs to be seen by a doctor or is getting an MRI of some sort, heartbreaking, because he has the biggest smile on his face, his hair is a bit messed up, his cloths look like they’ve been twisted round his little body, no doubt in his indeterminable struggle with a world that he just wants to explore, but by his smile you can tell he has very little idea of where he is or at least why he is there. However, the mothers face tells a different story, one that needs no explanation, she is holding on to her little boy like he just might slip into that tube and never come back, at least not as the same boy he was. It makes me sad.
There are a plethora of other kids there just waiting for a mother or father. Unfortunately these kids are rude or at least loud with one another, and have no business being here. Not just because of their disposition, but they are loud and rude for a reason: they are kids. They should be outside, playing, shooting a basketball or figuring out how the world spins. They should be far from the misery that surrounds this place. I pull out my crossword puzzle and get to working on it. (Bitch alert) It's hard and I can't seem to really make it work today, I don't know if my mind is elsewhere, or it's just beyond me, either way it makes me angry. (not sure if that's a bitch or a whine. Either way, you were warned.)

(this is my puzzle that I couldn't finish!

Again, my puzzle.

Do not finish it and send me the answers.

It may force me to think about knocking you one on the head.)

"Fernanada...Ferr...Fa...Benjamin?" I get called up to the registration desk. I sit down in the chair and begin filling out the ubiquitous paper work and answering the ubiquitous questions. Home address, SS#, next of kin, Insurance. You know the drill. However when they get to the insurance question they ask me if I still have an insurance that is not current.
Here's the deal: In March I started a new job, with the new job, new insurance. The last time I saw this particular doctor they told me I would need to get one of my bi-yearly MRIs in September. I knew that by the time I was ready for the MRI I would be under the new insurance. I told them this, and they told me to make sure I called them with the new info so as they could get any pre-certifications that they might need. Fair enough. Now being in the situation I am in, this sorta thing is important to me, so I began my coverage of my new insurance (which is scary in and of itself, for another post though) I called said doctor office and after a few "hold on a seconds, and let me transfer you." I updated my info with a nice guy on the other end of the phone, and just a few days later, in the mail I got my confirmation for my MRI (with previously mentioned directions). Good, fine, great September 3rd put it in the book and take the day off from work.
Now here I am at the registration desk and no one has the new insurance information!? Needless to say I am a bit perturbed, but the woman behind the counter is pleasant, I still have my crossword puzzle, and she seems to have lots of people to call that maybe able to help. About 20 minutes go by and she tells me to go back and take a seat, they are looking into it for me. I'm a little hot, but I have always been under the credo of "kill 'em with kindness." These people get yelled at all day and as I am sure we have all seen they turn off the minute a voice is raised or a snide comment is leveled. I thank her for her help, which it seems she appreciated, and I take a seat. I still have my crossword puzzle. I sit for a few more minutes, acutely aware of previously mentioned children, very tired, a bit dizzy, and suddenly I hear my name one more time. Finally satisfaction! I get back to the window only to hear, “It turns out you do need a pre-cert with your new insurance, we're gonna have to reschedule.”
OH MY GOD! I am hot, but again I know it is not this woman's fault. I do not lose it on her. She then tells me I need to go upstairs to my neurologist’s office to update all my info with them and then they will see about a new appointment. I'm sure that she realizes that I am upset and apologizes many times, but I tell her I know it is not her fault and thank her for all her help. I go back out into the hallway. I get lost again. If I wasn't so tired I might have started hurting people, that guy in the bandana was lucky I had MS, otherwise I might have laid him out. I ask directions, get to the right bank of elevators, and in all my MS wisdom promptly forget which floor they told me to go to. Apparently it was not 4 nor was it 3. Luckily it was 2. I make it in to a much more cheerful waiting room, but with people that have my disease, other neurological diseases that I don't want, or people that care for those that are infirmed. Oh and a handful of kids. It is a bit of a bummer. I wait in line, patiently, until a nurse finally asks me if she can help me. Can she help me? I take a breath and begin to explain my situation. She stops me and says," oh your the guy..." She isn't very pleasant and it is rubbing me the wrong way. However, kill 'em with kindness, right? I finish my side of the story and all she has to say is, "well who did you talk to originally to update your information?" I couldn't remember. "Oh, well you need a name. Always get a name."

Oh right, because I was supposed to know that here in one of the top hospitals of these fine United States of America you employ the unskilled, the useless, and the inept. I am supposed to check out the referrals for the neophyte on the other end of the phone. If I was to call into question this gentleman’s credentials some might call me paranoid because I didn’t, now somehow I am the incompetent one. Furthermore what kind of system do you have, I clearly heard the guy typing? Was he just tapping a pencil on his half eaten cookies or was he practicing his dancing on my file? What’s worse is that now my anger is displaced, somehow they have turned my justified anger onto someone that for all intents and purposes doesn’t exist. I'll never see this guy, nor if I did would I even know it. It’s this woman in front of me who I think deserves the tongue lashing, but I can tell that somehow this woman is feeling that I am taxing her out, I have some how thrown a wrench into her day. Perhaps it was close to quitting time, or she needed a break for some more cookies? If not for the tiredness, dizziness, and slight nausea I might have jumped over that desk and shown her a thing or two about customer service. She, like the guy in the bandanna, is also very lucky I have MS.
To make a long story a little shorter, she told me they would look in to it and try to reschedule me as soon as possible, maybe Saturday. That would be perfect I tell her, as I have already taken off from work today, I actually have off this Saturday, and I have an appointment scheduled for the 9th with the fine doctor. I humbly thank her for her help and make my way back to my car. I am too tired to be truly angry, it is a waste of my energy and my time. I pay the $5.50 for the parking and make my way back home. I see my wife and children and know that it will all be okay at least I get to spend the day with them.
Incidentally, the rest of the day we ran a few errands and when we returned home we had a message from the doctor’s office. Turns out my new insurance didn't need a pre-cert. Oops. Oh and they rescheduled me for Wednesday the 17th. It’s like they think because I have a disease I live for that disease. This is not the case, I am still in half way decent shape, so as they say, I am making hay while the sun is shining. I can't take the day off from work then. I have been trying to get a hold of them all day today. Surprise, I haven't been able to do it.

Thanks for reading, if you're still here, sorry to bitch.

2008-08-30T00:26:00.000-07:00

Solu-Medrol

08-15-08

Description

Methylprednisolone is one of a group of corticosteroids (cortisone-like medications) that are used to relieve inflammation in different parts of the body. Corticosteroids are used in MS for the management of acute exacerbations because they have the capacity to close the damaged blood-brain barrier and reduce inflammation in the central nervous system.

Most neurologists treating MS believe that high-dose corticosteroids given intravenously are the most effective treatment for an exacerbation. Patients generally receive a four-day course of treatment I had five days for one hour a piece. This high-dose, intravenous steroid treatment is then typically followed by a gradually tapering dose of an oral corticosteroid. Today is the last day of the pills

Corticosteroids may produce mood changes and/or mood swings of varying intensity. These mood alterations can vary from relatively mild to extremely intense, and can vary in a single individual from one course of treatment to another. Neither the patient nor the physician can predict with any certainty whether the corticosteroids are likely to precipitate these mood alterations. I can predict, and yes I was a right bastard. My wife is a saint.

Side effects may also include increased appetite Yes; indigestion oh yeah; nervousness or restlessness Call me Woody Allen; trouble sleeping It's quarter to 4 in the morning you decide; headache This is unfair really, if I breath I get a headache; increased sweating Like a preacher on Sunday; unusual increase in hair growth on body or face. lets be serious, I would welcome this one, but alas it didn't happen.
acne or other skin problems It's like Peter Brady on class picture day; swelling of the face I do believe that this has happened, but can't really tell. I'm always accused of having an inflated sense of self; swelling of the feet or lower legs not this one; rapid weight gain not rapid but this time around I gain three pounds; pain in the hips or other joints (caused by bone cell degeneration) Maybe pain in the ass, but the hips no; bloody or black, tarry stools thankfully No; elevated blood pressure Check; markedly increased thirst If the Hoover Damn burst I might be sated; menstrual irregularities I will have to say no here seeing how it would in itself be an irregularity had I started menstrating; unusual bruising of the skin only where the nurses missed the veins for the IV; thin, shiny skin haven't noticed this one; hair loss fine kick a guy when he's down; muscle cramps or pain I don't care how much water or potassium you think I am not injesting my body was just built to cramp. Once you stop this medication after taking it for a long period of time, it may take several months for your body to readjust.

* Since it may be difficult to distinguish between certain common symptoms of MS and some side effects of methylprednisolone, be sure to consult your health care professional if an abrupt change of this type occurs.

I hate this therapy, there is nothing pleasant about it. It often times seems that the cure is worse than the disease. Unfortunately I still feel ill. Doctors are unhappy with my exams. They are going to try a new treatment called IVIG.

I always wanted some of the perks of the famous, but this is ridiculous

2008-08-26T11:00:00.000-07:00

In the three plus years that I have been diagnosed with MS there is one thing that I hear more often then anything else, "Did you know Montel Willams has that?" The answer is of course, "yes." or I hear "Richard Pyror died from that, right?" Well, no, not actually died from it, but he was in pretty bad shape because of it.

I hear about Teri Garr or Meredith Vieira's husband (Richard Cohen, sorry Richard, don't mean to make you live in the shadows of your wife, but it's what I hear). I think the unflinching cruelty really hits home though when people realize that even the great Andrew "Squiggy" Squigman from "Laverne & Shirley " can be cut down by this disease. There is no justice. So I guess I could be in worse company. However it is a club I would gleefully rescind my membership from. I know we all would.

I hesitated to start this blog. There is a certain level of feeling so self conscious about writing about myself, but more to the point I am not sure that I can adequately express myself on the subject of MS. While those of you who know me are well aware of my disposition to make an ass out of myself on a daily basis, I'm not sure that MS is the right subject for me to discuss.

Let's be honest, I am a huge ass. This is one of my God given talents. However when it comes to my health, my disease, are jokes appropriate? This leads me to one of the things I tell people. I have to laugh because if I start crying I don't know that I can stop. This is true for all of us. There are terrible things all around us, and if we really stopped to truly digest it I'm not sure that any of us would go on. However that being said, I don't plan a laugh riot here. Just a few thoughts on the things I am going through.

If you are reading, and you have some words of encouragement, advice, thoughts, please let me know. If you know me, you know I love to talk about myself. If you don't, you are reading a blog about me so I would guess it's pretty apparent I like to talk about myself. I'm not trying to be conceited though, just trying to make sense of something that has no answers.

I don't mean to be a downer but I've got an incurable disease.

2008-08-11T12:18:00.000-07:00

I have Relapsing Remitting Multiple Sclerosis.
I was diagnosed in April of 2005.
I had one relapse that summer.
I have just started my second.
Today I started a course of intervenous steroids in hopes of staving it off.

I can hear you now, "oh wow, Ben, I had no idea. You look so healthy. You're so thin and handsome. I mean if you weren't married I...."
Well I get the idea, and I appreciate the thoughts, however it is true. I have MS. I have had it for a long time, longer than any doctor seems to be willing to say. While I don't keep my condition a secret, it is often times not a good conversation starter. It sorta kills a mood.

"How are you?"
"I've got an incurable disease."
"Oh..."

See what I mean? Just doesn't leave a lot of room for exposition. So sometimes it gets pushed under the carpet, and people who should be in the know aren't. It's nothing personal, I'm really just not trying to hog the conversation.

So eat it, I got an incurable disease. Wanna fight about it. Figures you pick on the crippled guy.

___________________________________________________________________

So I guess first thing is first, some who are reading may not be aware of what Relapsing Remitting Multiple Sclerosis is. So here is a quick overview.

From the National Multiple Sclerosis Society web page.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

There are four different types of MS. I have the most common.

Relapsing-Remitting MS
People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

The long and short of it is this: My anti-bodies have freaked out. As anybody my anti-bodies fight off the standard flu, cold, or run of the mill sickness. However my anti-bodies are currently on a seek and destroy mission for anything that looks like my Central Nervous System. No one knows why and there is no cure. This is a problem.