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

Back To The Future

As most of you may know, I am no longer able to work due to my illness. If you’re curious about that, scroll down to The Chronicles of Biff for more details as I won’t be rehashing what most are already aware of.  My days consist of a whole lot of nothing, in the grand scheme of things unless you consider what household chores my physical limitations allow me to do and when in session my homework from classes to glean something productive and long overdue in all this. Hell, if I didn’t have a clock, a cell phone and a tv I most likely wouldn’t be able to discern a Tuesday morning from a Friday afternoon (except that Law & Order marathons are normally on Fridays). And I feel like being sick keeps us from being a normal couple when it comes to socializing and getting out.  Then again, how do you really define a “normal” couple? Who knows, it may be us who are normal and everyone else is Cocoa Puffs. But thus I digress. Tonight, we got the opportunity to play grown-up and it was a lot of fun.

The evening was simple and more often than not the less something is, the more it means.  It was a delicious dinner, good conversation and company as well as the enlightened and entertaining innocence of youth that dually reminded me of how it was to be young and how good it is be older.

So many of us wish that we could go back to the freedom of our youth be it for a respite or for a longer period but sometimes I think its therapeutic to play grown-up. We fantasized when we were younger but we didn’t see the bills and the stress of work and responsibility but in socializing in doing adult activities with like-minded and aged people. But so few of us get to make the choice to do this, often we’re forced into these adult situations out of necessity rather than want. Last night, for a few hours, I got to escape into the present and savor the benefits of having resided in this world for the time that I have. And to my company and hosts (and the most adorable baby in the world that isn’t me), I say thank you.

And as an addendum, I believe that caboose may be my new favorite word.

Head Above Water

A lot of things have changed in my life since May 25th 2010, as many of you are aware. I won't go into specifics (read below for details et al) but I try to hang onto as much of past and who I was, as is feasible. Time was I was a halfway decent swimmer (although for some reason I could never float on my back) but these days I fight to keep my head above water

Two things inspired this quick little comment (which will probably turn into a blog entry) There are pieces of my life that have slipped away, well maybe not away but down on my priority list. 10-15 years ago, this would've been one of the biggest days in my life; the announcement of the Oscar nominees. I used to see over 100 (one year over 200) movies in a year. I was a resident expert on a lot of things cinematic as evidenced by my own website full of reviews and articles about such. Nowadays, I am so far out of the movie loop that I can't even see said loop anymore. I'm lucky if I see a movie every 2 months. The only contenders I've seen are Lincoln and Les Mis (neither of which I was a huge fan of) and Moonrise Kingdom which was award-worthy. I'd love to say that I could slip back into that lifestyle now that I can no longer work but circumstances make that markedly difficult (access to movies being in a smaller market than KC, time, energy, health etc). 

Another reminder was watching a movie that I love and somehow forget the greatness of, Crimson Tide. I will watch it anytime, regardless of where I come in on it at. If my disability gets approved, maybe I'll try to regain some semblance of this. In the meantime, I watch another aspect of my past fade away as others become more prevalent. But, do not read this as a disappointment or lamentation, simply an observation on an overcast rainy day watching a great submarine movie. 

We mature, we grow up both physically and mentally and we to bring as much of who we were into who we are. Some things are easier than others. We can't drink like we used to, we can't move like we used to and memories begin slipping (although I still have trouble saying the word cinnamon) But there are things and people that we have control over to some extent. For me, I grasp on to what I can, hang on to the inner tube and stay above the surface. Once again I've rambled on but those who are familiar with me know that this is how I would talk were we face-to-face. Take care all..

8.5.7

If I Only Had A Brain

It has been said and noted by myself and others that my brain can be a dark and scary place. The amount and types of things that I remember can sometimes pale in comparison to why I remember them and what brings them back out of the massive file cabinet in my head. 

For example, that last file cabinet statement is actually a reference to an early-90s  Fox television series that a lot of people have forgotten about; Herman’s Head. In the show, Herman (William Ragsdale) was an office worker whose brain was filled with 4 people representing his emotions and intellect. Hilarity ensued. Whenever he tried to remember something you would see them sifting through filing cabinets.  On one of what will probably be a daily occurrence of tangents (don’t worry, unlike real life, I should be able to make it back since it’s written down) there were two memorable stars on that show. The receptionist was played by Yeardley Smith. Who you say? Well on one episode she answers the phone and says “No I am not Lisa Simpson”. Yep, she does the voice. Second and more prominently, if featured the debut to the masses of one Hank Azaria.  America is thankful. But now do you see how my mind works? One little statement or occurrence can set me off into a story or memory which may or may not be related to where my thought process began. I set out to do an intro to my new style of blog entry and instead I end up coming up enough for my initial one. 

And as a final note, there really is no rhyme or reason to said filing system. It fascinates even me as to what vision, thought, emotion or song will bring one of said memories to light. But now, you have a better understanding.

8.5.7