Information Society

Since May 27^th, 2010 (or March 15^th 2010 if you go back to when the symptoms started) I have had to deal and live with a very enigmatic disease/condition/illness, however you choose to define it. I choose disease because it reflects the seriousness of it. It is enigmatic because they are not 100% sure..

1.      What causes it

2.      How to treat it

3.      What causes the pain

4.      Why it is incurable (re: why doesn’t the pancreas regenerate like other organs)

You can research, Google, look up on the internet and it will reflect as such.  Here are some links from, what I would consider, reputable sources:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001268/

http://www.webmd.com/digestive-disorders/understanding-pancreatitis-basics

http://www.mayoclinic.com/health/pancreatitis/DS00371

Actually, there is one thing that is 100% (I believe, medicos/sufferers correct me if I’m wrong) and it is that consumption of alcohol, in my case even in the minutest amounts which involves cooking with it (yes I’ve tried it and yes it had the same effect as consumption) What else has it changed?

1.      The biggest change is the pain. I am in some form of pain at all times. Sometimes burning, sometimes cramping, always uncomfortable. Even medicated it is down to a discomfort

A bit of insight into this pain as some have asked what it feels like. First and foremost it is located in my upper abdominal area, starting near the middle just below the sternum (the head of the pancreas) and then to the left (the body and the tail) below the ribs to my left side sometimes radiating to the back (since the pancreas is in the middle of the body). In comparative terms I’ve given this basic description.  Most of the time it feels like you do when you eat way too much and cramp up (say during your Thanksgiving indulgences). At its worst, it is a burning pain akin to someone taking a poker, holding in some coals and then shoving through my left upper abdomen. Make sense? Sound fun?

2.      As I said, no more alcohol in any form. No way, no how
3.   I have to take no less than 25 pills a day just to make it thru, including enough high powered pain killers to drop a small Indian elephant and they don't phase me in the least. 

4.      I cannot sit or stand for long periods of time nor walk for a long distances (say a block or two) without needing to rest, recover or deal with pain and be out of commission to recover (I once spent 5 hours at the Columbus Zoo, sitting for breaks every few minutes and subsequently being unable to function much for the next 2 days) 
5.  My weight dropped from 192 lbs to 154 lbs in 11 months. I have since gained about 23 lbs of that back but it still yo-yo's unpredictably
6.  My appetite is basically gone, I cannot eat as much as I want, my diet is more low-fat than before and my taste buds are all out of whack

I have to wonder something though, based on recent history, and that is that my friends on here may not understand the disease, its effects, its disabling nature and the effect that its had on my life. So I’m willing the have a little Q & A here. Ask me anything you want about it, curiosities, things you may not understand, clarifications, anything and I will answer it to the best of my ability. I want people to understand that this has turned my life upside down. It has completely changed the way I live, the things I can no longer do and the drastic changes that I have had to deal with. I do not want there to be any confusion on the matter, namely why I feel like I am worthy and in need of Social Security disability insurance. This is my future, my life blood and something that I need for my future survival to try and maintain the closest semblance of normal that I can with this. So, the floor is open. Ask away

A Wonderful Night..

Step into the wayback machine with me Mr Peabody..

Time was, when I was doing my freelance film criticism, this night was one of the highlights of my year. I was seeing around 150 (196 one year) movies in a year and therefore had a thorough, in-depth understanding and knowledge of most things cinematic. Tonight, was the apex of all of my viewing. All those Friday and Saturday afternoons in the dark, all those Sundays spent writing, creating and posting the reviews for my site, it all lead up to this. There were even 2-3 years where I did in-depth articles about my analysis of who should be nominated and thusly who should win. It was fun. It was exhilarating. It gave me a rush. I loved it.

I have always been a movie fanatic, I have always loved most things cinematic. That hasn’t changed a bit. So why did that aspect disappear? Long story short, ironically, was California. Hollywood. Where the magic happens, my move there tapered off my movie viewing/writing to the point where I’m lucky if I see 10 movies a year (I used to do that in a month). Could I do it again? Who knows. My life is a mass of unpredictability but it would be nice to get back in touch with that side of me.  Everyone has their passions in life and from about 1998-2003, reviewing movies was mine. I still have my opinions (don’t bring up Big Lebowski, Napoloeon Dynamite or Nicholas Cage) which I am not afraid to voice and never will be. This thing may diminish my body but I’ll be damned if it takes my mind. So tonight, Seth, please don’t screw this up (no James and Anne, no Oprah/Uma) and Academy, please get it right. 

Another Day In Paradise

Pardon my seriousness for a moment: I feel like I have to say this every so often so bear with me. I try my best to bring smiles and laughter here through these glimpses into my life and mind. But the truth, as most know, is that every day is a fight for me. A fight through pain, nausea and other related symptoms resulting in near constant medication (bear with my repetition, most of you know all this already). 

Fight of my life sounds so melodramatic and that is one thing I try my best to avoid but it is the hardest thing I have ever dealt with and recently my condition has gone noticeably and inexplicably downhill. But I still fight every day, its all I know how to do. I try to keep my life as close to some semblance of normal and who I used to be as I can. And I will always fight, one time when my stubbornness (thanks Mom, Janice Salisbury for that) comes in handy. But truth be told, as I have said ad nauseum, having my loving, amazing wife and soulmate Melissa, my best friends Becca and Liza, my like-minded "sister" Janette and the entire network of friends and support that I do is invaluable. However you do it, via a shoulder, an ear, thoughts, prayers, words here, they are all very important to me. So in my typical long-winded way, I'm trying to say thank you. One and all. 

Hard to Handle

I don’t have a way to sugar coat, tie it into a relevant pop culture reference or sync it with a story from my past. All I can do is say is this; I am scared.

I am scared that something has gone wrong inside me because the last few months have been the worst in the 2 ½ years since my diagnosis

I am scared that my doctors whom I, for the most part, do not trust are not taking me, my diagnosis, my treatment and/or my prognosis seriously

I am still scared that somehow, someway this is all in my head

I am doubly scared that this upcoming procedure next week will either:
   - not show anything (making the new doctors doubt me that much more)

b     - more importantly, show that things have gotten worse and there is additional damage

Thusly I’m scared that:
  -  It doesn’t show anything that things will remain status quo treatment and medication    wise
 -  if it does show something that there really isn’t much more that they can do besides throw more drugs at it.  Frustrating but also its all they can do

I am scared that my attorney may not believe as strongly in my case as I first thought she did.

Thusly I fear that Social Security will not believe me or take me seriously and tell me that I am not disabled and can still work when I know damn well that I can’t and subsequently

I am scared what I will do financially if they do deny it once again

The greatest fear that most of have is the fear of the unknown; we all have it in some form or another.  It is only natural. Kids are scared when they start school, people are scared when they start a new job and of course people are scared on first dates. Why? Quite simply that when you cannot see what happens next without being there, it instill a sense of fear in the what if's department. It may also bring excitement and anxiety but I defy anyone to say that there are not even a little scared of those things which the answers to are not readily visible and available. 

My illness is wrought with unknowns. Aside from being a fairly rare disease it is also very enigmatic. There are next to no guarantees when it comes to most aspects of it. The only sure thing is that drinking WILL make it worse and if kept up, it WILL kill you. I won’t let that happen.

As I have said numerous times and can’t see enough I love many, many things namely my wife, my family and my friends and regardless of the results of things, I will not give up on them as they haven’t on me. I am resilient and I’ve fallen down before and always get up and will always keep getting. I am scared, I am down right now but by no means am I out.

Prologue: People may be tired of hearing about my illness and me ranting about it and I can see why. However when you have something like this that pervades and affects nearly every aspect of my life, it is hard not to talk about it once in a while. Thanks for putting up with all of this.

Point(less) of Know Return

Sometimes I can say things better in writing than out loud and this may just be one of them.

For those you who know, via occupation, Internet research or my ramblings, pancreatitis is a terrible disease. It is rare, enigmatic, unpredictable and frustrating beyond comprehension. Depending on the research you believe, it occurs in approximately 4-8 per 100,000 people. Some of this, I believe has to do with misdiagnosis, ignorance or just plain lack of knowledge on the subject. In fact, I have a wristband, in the spirit of awareness campaigns, for my disease made by a friend of mine who I believe is selling them if I’m not mistaken

To be frank, I don’t know where this rant is going. Sometimes when I write, I start with a simple idea and then expound upon it. I usually do not have anything completely done but I open up my head and let it pour out; unedited and pure. Then I will review it once for making sense and grammar via Word checker and go with it. I do not believe in over editing. If you look at something enough times you will find edits and you have to draw the line somewhere. For rants and blog entries, that line is 2. In school papers that line is 4-5. Hell sometimes I don’t even have an idea, I just sit down and start writing

Writing has always been cathartic for me and its one of the few things that I think I do well. I used to do a lot more of it but I’ve slacked off not for lack of time but for lack of just motivating myself and sitting down and doing it. Sometimes I have a point, sometimes I don’t. And as many of you also know, I love to tell stories and I have a lot of them. I’ve lived a lot in my 45 years and have forgotten very little about. People say that I write like I talk. Those who have seen both will probably agree, those who haven’t are probably not surprised.

One of the interesting parts about rambling is that since you never had a goal to start with, you can stop anywhere and no one will be the wiser. When I get like this, I just write until the flow of ideas stop. But it does help to at least develop some semblance of a goal otherwise will audience will think you’re just a rambling mess and stop reading as I fear some people have.

But now a new factor has come into play. The pain; it is a double-edged sword. On one hand it can be therapeutic to write and let things out but on the other hand it distracts my brain and makes it hard to focus, remember and communicate in general. So you’re stuck with my rants just as I am stuck with this damn pain. Forever. And that’s a might long time. The words rest of my life haunt me sometimes and occasionally send me into a state of sadness. I do emerge from it. The length of time directly correlates to the level of pain and how much I dwell on it. And since I am in near constant pain of some level, I fear I will never be as good of a writer as I could be and as my talent should reflect.

So I know this is long and different from other entries but this is basically it. No witty no pop culture references, no relevant personal experiences. Just me because it’s just one of those nights that happens and will continue to. Now and always. It makes me sad, it makes me angry but it also makes me, me. Does not define or control but just..is. Peace

8.5.7

Hold On Hope

This may not be as much of a creative or entertaining entry as much as it is a technical, straightforward one.

There is a glimmer of hope on the horizon and I will take them wherever and whenever I can get them.

There are very few things that put smiles on my face regarding my pancreas (mainly supportive wife and friends and Vicodin which make life more tolerable As many of you may remember, I have had several procedures done in the diagnostic and analytical aspects of my disease. I have had a CT, Ultrasound, Endoscopy, and Nuclear Gallbladder Scan to name a few. But the most important one, in my opinion, is one called an Endoscopic Ultrasound (or EUS as it’s more commonly known).  For the unfamiliar, it involves putting a camera, with an ultrasound monitor attached, down my throat to look around inside my abdominal area. The reason this procedure is good is because the pancreas is buried near the back behind the stomach et al.  This allows a more introspective look at Biff in all his painful glory. 

Praise be to all; the clueless VA doctor has actually okayed the procedure, in order to take a look at things to see why my pancreatitis pain and general health, has worsened over the past few months. The procedure is outpatient and not very risky at all and it was recommended by my previous and much more trusty gastroenterologist, to have at least one a year for that express purpose. This is definitely a step in the right direction in my eyes towards instilling confidence but I still want my other doctor back. Those who have been with me for a bit may know the importance of this and it makes me more comfortable having these things done.

What this means is my life just got much busier. In the 19 days I will have:

1.      A pre-hearing conference with my disability attorney regarding my hearing

2.      If my wife, hopefully, or another friend if not, can get the time off then I will the procedure one week later.

3.      Then the hearing itself one week later

4.      Not to mention my homework for both of my classes (20^th Century Art History and Criminology)

5.      PR for Let My Mind Flash With Blades and auditions for the 10-minute play festival as well as rehearsals for the play that I am coming out self-imposed retirement to return to the director’s chair.

Stress usually has a bad effect on my health in general but these are all good kinds of stress so I should be okay. Plus there is then a slim chance that Thor (a celiac plexus nerve block that I have had 3 times in the past) could be resurrected.

This whole experience has been harrowing and frustrated at times so I cling onto any glimmers of hope that arise in regards to it. So fingers crossed that all of these things will result in positive outputs; something that help with my morale and mental as well as direct effects on Biff himself.  Also it may help my disability claim depending on the results.  And on another note, I would like to once again thank my friends one and all for your concern and support in all of this. Onward and upward I hope and as usual, thanks for putting up with my rants and taking the time to tolerate my ramblings. Peace, love and carrots to one and all.

8.5.7

Workin For a Livin'

So as many of you know I am no longer able to work due to illness and have subsequently filed for my disability which I have a hearing on in 22 days after two denials. In both of the denials the reasoning given was that I can still do something to the effect of “light work”. All I’ve wanted is to be able to sit down and converse with someone to ask “what kind of work?”

Find me a job where I do not have to sit and/or stand for long periods of time, do any kind of physical activity, where I can take frequent breaks due to pain, discomfort or to take any of my multitudes of medications (no less than every 2-3 hours) and miss multiple days of work when I am having one of my “bad” days which I have at least once a week. Then state, look if you understood the nature of my illnesses and the change that it has caused in my life, then maybe you would think differently. I have near constant pain, I have nausea, I get winded easily, and any kind of stress triggers my flares which are distracting and at times debilitating. If you can find me a job meeting all of those questions, as a minimum, then dammit sign me up for it.

Since 2007 I have taken jobs for the sake of having employment, namely customer service and phone jobs. They are low stress for the most part, low physicality and basically what I call my “Wal-Mart greeter” jobs. I have already done my serious, grown-up job as an industrial hygienist for 12 years (8 military and 4 civilian) so I felt I have earned the right to take these kinds of jobs to coast in towards retirement or inability to work. Well guess what, I am now unable to work and am basically retired now, not by choice. So now, all I want to do is have someone listen to me and take me seriously about my present state of life. Just listen!! And give me feedback. Show me some empathy or sympathy to the extent that my condition warrants.

I have a fairly rare disease that strikes approximately 3-5 out of 100, 000 people and it is permanent and disabling, unofficially for now. I have doctors who will attest to it. I have witnesses who have known me before and after and can attest to how my quality of life has changed drastically. Please just listen and take me seriously. If I could, I would work. Hell I’ve held jobs basically since I was 15 so I’m not looking for a government hand out or to mooch money off the government because I am too lazy to work. I can’t! I tried and almost lost my job involuntarily (even though I was laid off and decided at that point that it was futile to even try when taking all the factors into consideration. I want to, but I can’t and it’s due to these afflictions that I have. Please just take this into consideration when you judge me and make your determination. I just want a fair shake. Is that really too much to ask?

I know this was more of a rant than a blog entry per se but I’ve found that writing is my catharsis and therapy to maintain as much a sense of normalcy as I can have for the rest of my life with this crap.

Thank you for taking the time and putting up with my venting session. Take care and have a very day. 

8.5.7