The Truth Shall Set Me Free

I do my best to stay and post positive or at least non-negative things (about my life and in general hence few politic themed things). Stress and negativity is bad figuratively for my mental state and literally as it aggravates my disease. And I do, for the most part. But keeping it inside can also be stressful so, like a volcano, things can only build up so long before they come erupting out. Venting/ranting/dumping is cathartic and necessary. So if you're looking for sunshine, rainbows and lollipops, you should skim down to cat videos or cutesy self-pics. This ain't for you. Move along.

No beating around the bush. No unnecessary filler. Just plain and simple and stripped of excess wordiness. 

• I am sick and tired of being sick and tired
• I am sick of not being taken seriously
• I am tired of no one having answers or being dismissive
• I abhor being condescended to and treated like a child
• I am a knowledgeable, intelligent adult and I have earned and deserve to be treated as such
• I would rather hear the brutal truth rather than a sanitized, vanilla frosting covered version of it

Just be honest. Just be forward and just give me the respect that I deserve and have earned. I know my body. I know there’s something wrong.  Unlike Nathan Jessup’s statement, I CAN handle truth. Give me time and attention I deserve and have earned in my 46 years.  Is that too much to ask? Answers, honesty, seriousness. It’s so simple to do and honor and right now, when my body is betraying me the most, it’s what I need.

·       If you don’t know, tell me and tell me someone who might 

·       If you don’t know, do some research and see if you can ascertain
·       If you do know, tell me. I can take it

It’s such a simple concept really. One of the many great things about children is that they will be honest and ask the questions that grown-ups are sometimes afraid to. If they think it, they’ll say it. They have not been tainted or jaded by real life. It’s too bad that some adults fail to grasp that concept.

Answers.  Honesty. Sincerity, Respect. Simple words, simple concepts.  As Nike© says says: Just do it.

Jerry’s life lesson #4377, learn it, know it, live it. There, now I feel a little better throwing the bucket of ice water truth. And for anyone who thinks I’m spewing negatively which will just stress me more, the opposite is true. It is out there and out of my system and I’m moving forward. I have survived a lot in my life. I am stubborn, I am a fighter and I will get through this too. Just watch me.

8.5.7

Ice Cream Castles

Post Christmas, Pre New Year ramblings:

a) Biff loves to play Grinch as he's not been behaving the last few days. Just because I haven't mentioned doesn't mean he hasn't made his appearance known this holiday season. Even when I satiate his sweet, he still rears his head ( I can only keep him at bey for so long). To wit..

2)  I had some mouth-watering, delicious double chocolate cake for breakfast from my amazing mother Janice Salisbury My taste buds liked it, Melissa approved, Biff didn't. Now if I could just have World-Class chocolate ice cream without going to Topeka or Olathe, for dinner)  To wit..

iii) I want to start a petition or whatever it takes to get a Baskin-Robbins back here to Lawrence. I know I would be a frequent visitor and patron.

E) Does anyone know of a restaurant in town that serves panna cotta and so is it any good. (going on a self-taught class/experiment on dessert-making in between class). This desire comes thanks to Chopped, Top Chef and other cooking shows so I'll like to try it and Melissa has no objections ). Anyone with recipes is welcome to submit.

Back to the couch to the Vicodin and Biff duke it out in my abdomen. Hope you had a great Christmas so far and a happy New Year if I don't talk to you before then (any bets on the odds of that happening)


Carry on..

8.5.7

So Happy Together

Do me a favor dear followers;put aside the anger and frustration of the current snowy conditions and go with me:

Look outside now. What do you see? White ground, white trees, white leaves and basically a white sky. Everything is the same, harmonious and together. This doesn't happen very often so drink it in. Right now, the normal variations and differences in aspects of nature are uniform. Personally I think it’s beautiful and peaceful to look at and kind of puts me at ease considering all the things in the world, both mine and all over.

I am aware that it causes logistical problems, medical problems and becomes a general inconvenience but please, for me, look at the vision of the world that I described and that Mother Nature has given to us

If nature can work together to show us beauty, why can't we. I am not asking you to forget about or dismiss the things in life that cause consternation, I’m just saying  please, for me, look at the world that I described.  Breathe and drink it in and appreciate it, send your brain on a brief snowy respite.

Then go back to your problems, issues, differences or whatever with a renewed sense that amidst all things in life that have and do  occur to and around us, nature indeed can turn all of its different colors and scenes into one uniform vision of beauty and peace.

Thank you for taking the time. 

8.5.7

A Day To Remember

*Let me preface this by saying that my words here may be a bit more disjointed than normal but its a reflection of my feelings on that day*

Being a proud American and military veteran, I felt that I couldn’t let today pass without saying something. There are things about that day that stick in my mind. 

•  I remember my friend Jeff calling to wake me up to tell me what happened. I didn’t take him seriously because he’d done this before with reports that “the government is admitting UFOs are real” or some other conspiracy theory that he’s apt to want to bring my attention to. But this call was different, I could tell by his voice having known him all of my life.
• I remember the hardest phone call I ever had to make, to my friend Lauren a New York native living in Los Angeles at the time.  Her scream will forever be burned in my mind as she watched her home in flames.
•  I remember being stuck at home from work because my engine had died the day before and thusly I got deeply immersed in all of the news coverage so I became more knowledgeable and thusly more emotionally affected by it all
• I remember going online to AOL at the time, to find out about my friends in the area to check and see how they were.
• I remember wanting to write something but the words were just not there. For one of the few times in my life, I was silent.

Then I remember the aftereffects in the days, weeks and months following

•        At the time I was knee deep in my freelance film critiquing and yet I had no desire to see a movie.  It just seemed to give me a greater sense of priority and movies were not one of them
•        I remember going to work, for a major credit card company, and the accommodations that we made for the affected citizens. Namely, whatever they wanted, we did for them. And I did so proudly
•        I remember my first trip to New York City two months afterwards and seeing a city still stunned, shocked and saddened. I remember the memorial next door at Grand Central Station. I remember the abundance of NYPD and FDNY apparel of which I proudly sported. I remember seeing the smoke during a boat ride around the Statue of Liberty; a contrast of freedom and tragedy. And I remember not wanting to go to ground zero because while I would like to pay my respects, I would be upset if there were profiteers trying to make money off of it in the wrong way and I may get arrested if I come across the wrong person saying the wrong thing.

September 11^th was, in my memory, the darkest day in US history. The lives that were lost, the security that was compromised and the sense of fear amongst as a nation will, hopefully, never be forgotten. What happened afterwards was nothing short of inspiring. People were proud to be Americans again. People put their differences aside and showed why we are the UNITED States of America and while it is sad that it took such an event to do that, I am glad that we the people reacted that way. Yes, we should have been angry. Yes we should have wanted revenge and yes, in my opinion, we should have retaliated and please save your comments on the ongoing wars there as I agree that it may have gone a bit too far but that’s not the point. But the key in the beginning was to come together and that’s what we did.

Twelve years later, I think it’s a day to put our political differences aside on this. Infighting and such, going past healthy and productive debate, is not necessary on a day like today. Today is a day that polarized us as a nation, at least from my perspective and so I ask, please, that for today we remember that we are not Republicans, Democrats, Liberals, Conservatives, Independents, Libertarians and the like. Today, we are Americans and it should be United We Stand.

 Thank you and God Bless America.

The Biggest Part of Me

My mother always tells me to keep my positive outlook on things when I post or talk about the negative aspects of this disease and I’d like to think that for the most part I do my best to do just that.

When I get those dull throbbing aches, I counter with a slice of my time-sharpened witticisms about my past experiences.

When I get those blinding, burning pains, I counter with insightful, humorous anecdotes.

When I get those stabbing, uncomfortable pains, I shoot my mouth off about my controversial views on current events in relation to my life.

I have always used humor as a defense mechanism in dealing with emotionally heavy situations. Just ask anyone who knows me. Life itself is one long, fun ride with a few serious but necessary curves and bumps. I believe that one of my purposes on this planet is to do what I can, using what I’ve lived through and what I’ve learned, to try and bring as many smiles and much happiness as I can. I feel as if I’ve lived 3 lifetimes in my 45 years (including at least one since my diagnosis) and I have been through (and survived) a lot. Life has knocked me down several times and even out a couple of them. But I have gotten back up every time. I am a fighter and this is an aspect of my life when my stubbornness actually can work in my favor (no matter how much it may frustrate my dear loving mother) and I’d like to think that I am one of the most resilient people that you will ever meet.

So remember:

1.       When you see me complain about having a bad day with this horrible illness.

2.       Or when I talk about being in pain from it or nauseous from all the pain medications that I take.

3.       Or when I exhibit my frustration in any number of ways that I was given this rare disease possibly of my own, possibly not. Doesn’t matter.

4.       Or on those days where I am down, physically and/or mentally weakened enough that I cannot or am not be myself, I have the best, most amazing network of friends and loved ones who are too numerous to name here, to pick me up and support me until I get back on my feet.

Remember that I will bounce back. Like MacArthur I will return. Like George Carlin I will crack a joke, or make tasteful, good-natured jokes or observations at people or society. Like Jon Stewart, I will give you sarcasm or a humor laden commentary on current events that affects us all.

Remember this. Like the phoenix, I will rise again. And I will keep rising every time. I have a tough road ahead of me, I know that.  But I will not let it get me down. I will not let it control me. I will not let it define who I am.

Hey Biff, you dirty, unwelcome, uninvited bastard. I dare you to bring it on bitch. I am not afraid you. . I am bigger than you. I am stronger than you and I always will be. And I will always fight with everything that I have an am. You cannot and will not take that from me. With my inner fortitude and the support of my friends and loved ones, I will overcome. Always

United We Stand..

I feel like I woke up inside a season of 24.

I would like to reiterate something that I said the other day though. This is not the time to spew political rhetoric, from either side. My leanings are well known but save it please, namely those who troll in the comments sections of articles saying things that they wouldn't have the balls to say in real life. You have your beliefs, you have your opinions and you have your thoughts. The freedom and beauty of America allows that, more power to you. All I am saying is in the midst of all this can you please bite your tongue for a few. The time will come for discussion, debate etc but this is not it. This is the time to bond together as a nation, Rep and Dem, Liberal, Conservative, Independent, Green Party, Ron Paul, Ralph Nader, the Hale-Bopp comet and Gozer worshippers. Together, United We Stand. This is the country that I fought and served to protect. Can we set the differences aside for now and focus on the victims, their families and catching the lone person who still did this to bring them to justice. 

I close with my previous post on this. It may be repetitive but it gets my point across. "Please do me, and the victims and families a favor, out of respect. Do not point the finger of blame towards any political party (Reps or Dems, Conservatives or Liberals, Obama or Bush etc.) This is not the fault of any of them. It just isn't the time or place to express political rhetoric. This is horrible, tragic and a time to band together as a nation. Remember the old phrase, united we stand etc etc. Thank you. And if you don't agree with me, go ahead and delete me and if you spew it at me, odds are you'll be toast. Not. The. Time. God bless America

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