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Posted 2/8/2013 1:55 PM (GMT 0)
 As most of us are all to familiar with the stress and mental hell this disease puts on patient and caregiver alike I thought some of you might benefit from something to change that tide . Everybody no matter the situation or how positive your outlook may be is susceptible to giving in and quitting , Of course more so those of us with chronic illnesses . Worry , Stress and just feeling out of control is a killer all by itself so trying to avoid as much of that as possible is medicine in itself . 

Hence we have to learn how to make chicken soup with chicken sh** . Now being a southerner I grew up eating a lot of different animals and stuff most of my Yankee brethren wouldn't touch , A lot of it is really tasty particularly with the right seasoning . Lets make this clear I'M not endorsing the consumption of chicken poop , It's a metaphor . My point being that it's essential for each of us to make the best of our own unique situation . The spices you use to make this soup edible is the key .

A lot of times I found myself obsessing over tiny issues and eventually turning them into mountains of despair . I picked up a book a friend gave me and tried to read it , Encephalopathy made it near impossible to focus my attention on more than 3 words at a time . I gave up and felt that surely I am losing my mind only to pick the book up again if for no other reason than to try and make others think I wasn't losing my sanity . Crazy people can't read , Right ? Oddly enough the more I stared at the hollow words on the page the more sentences began to make sense and sentences turned into paragraphs . My mind had gotten hooked into the short novel's story line .

I have looked back on those days early in my diagnosis and see a pattern of how my aptitude changed towards my illness . I began getting off the couch and feeling sorry for myself , I walked outside and thought about building things . Nothing hard of course , The swollen belly and lack of equilibrium limited any strain or tedious process but getting on all fours to dig a hole to plant a shrub or flower became a hobby . Fresh air , Sunshine and the worry of tomorrow faded away if for only that short time my hands was in the dirt . Pretty soon I was planning a spring garden .

 Many a minor task that drew my mind away from the demons of this disease became in hindsight a form of ingredient to making this less than tasty based stock ( Liver disease ) a pretty reasonable tasting soup . No , it would be nice to not deal with it at all but that isn't a option now is it ? Did you know that there are tons of real studies done about this same subject of mental stimulation and physical health . " If the mind wills it the body will follow ". Finding the ingredients that suit our individual taste is where the answer is at , This may be your work , Your animals , Your garden or just a pen with a blank piece of paper waiting to see your scribble . Well that's my take on it . And yes , Before some smart arse makes a comment about it . YES A PIG CAN READ !!!

 A. Ziffle    

Posted 2/8/2013 5:40 PM (GMT 0)
Ziff, I did not know you were a redneck! All this time I thought you were Australian from ( the land down under). If you put chicken droppings in your chicken soup you are probably a redneck. Do Pig's drink Everclear (moonshine)? Have you ever had any moonshine?

Consider your self lucky to live down south. Up north here it sometimes called seasonal depression syndrome. It is cold, gray, and hard to get off the couch when a northeaster or blizzard comes through, like today. Four years in a row in the 1990,s I went to Daytona Beach in Florida for a week to ten days to get away from New England weather. Since then it has been spotty, other parts of Fla., Vegas in 2009 for 7 days in February. Best day was around 65 degrees but better than the suburbs of MA.

I agree with you that you need faith and a will to live with Hep C and cirrhosis, sitting around feeling sorry for myself is no remedy. I became decompensated and started to get some of the symptoms of cirrhosis after my gall bladder operation. Before this the word Ascities wasn't even in my vocabulary. I read on-line that it could be 2 and a half to 5 years before my expiration date. Then, a year later, my little brother who is 2 and a half years younger than me was diagnosed with stage 2 colon cancer and my problems became trivial. He went through chemo and they removed about 18 inches of his lower colon, wore a bag for 6 months until he healed. Also played the waiting game and still is whether the cancer has metastasized. A lot of stress and mental gymnastics for my brother,me and my family. Through going to the hospital and phoning him I forgot about my situation because I acted like a coach when he got negative and had his blue days and in the meantime started to believe the positive vibes I was relaying to him.

Sometimes if you got a bunch of people in a room and they wrote down their problems and put them in the hat and read each one aloud, you would be happy with the problems you have and not someone else.
Posted 2/8/2013 6:48 PM (GMT 0)
So true, Ziff and Mike. The whole point is to get one's mind off of one's self. In doing so, you don't allow yourself to obsess about what you are going through or what might happen. For me, a large part of this is co-moderating this forum. I honestly don't know if I could've gone through liver cancer and transplant "alone," and without the outlet of posting and receiving great support from others here. I got a cat in Sept. and he also takes my mind off myself. Being a rescue cat, he craves attention and gets it.

Mike, I remember when you were obsessed with your edema, and with good reason. But it went on and on. You finally found the key to open your mind to other possibilities. What you post today is miles from what you posted back then. Congrats on that!

Ziff, likewise you were having a pity party and had a negative view of your liver disease. But you stopped drinking and took it one day at a time, so I never hear "poor me" from you anymore. Instead, you are sharing your experience with others, giving them hope that they can dig out of that dark hole and see light.

As you both know, there are far more caregivers than patients here, so it's really helpful to hear the patient's side.

Hugs,
Connie
Posted 2/8/2013 7:17 PM (GMT 0)
" Sometimes if you got a bunch of people in a room and they wrote down their problems and put them in the hat and read each one aloud, you would be happy with the problems you have and not someone else. "

 Yep , Ain't that the truth !! I live in North Carolina . Yes moonshine or corn liquor is still popular amongst the locals when they can get there hands on it . You cant just buy it from any yahoo though , It takes skill to make a proper batch and finding someone who still knows the art is rare now a days . Buying bad shine will kill you or make you wish you were dead . Lucky me , I need not worry with that problem today .

 I'm originally from Georgia but have lived all over the south ( Prerequisite for work ) . Lived in South Fla. for along while and met a fare share of ladies from your area who vacationed down there . Liked that distinctive accent they have . Guess they thought mine was pretty funny too . No offense but never took a interest to relocate that far up no matter how much I liked the ladies , I can't stand snow or being cold .

 You mentioned reading things online about your diagnosis . If you really wanna get depressed it's a second away online . I poured over medical papers , Studies and statistics and came up to the same conclusion you obviously did , I'm a dead man in short order . Funny how nobody ever emphasizes the successful cases or what it took to make those cases successful . Of course if you look at it " Medical papers " are like business forms , No personality , cold bland and pointed . They have there place in the medical community but what of us poor SOBs who stumble onto this mumbo jumbo desperately looking for a ray of sunshine ? Yeah backing off the search function has it's benefits .

I find comfort with the underdogs , always have even prior to this mess . One of the sticking points for me to have returned here for so long on this forum was the few who managed to go the distance beyond the numbers , I been fortunate to have seen a few like yourself . I always think that when one surfaces and starts writing here it makes my fight seem a lot less intimidating . Life this side of liver disease can be a lonely place and knowing someone else feels like crap and struggling through makes it all the more easier .

 A. Ziffle      

 

Posted 2/9/2013 3:35 AM (GMT 0)
I rarely have a feeling of giving up or self pity, to me this is a challenge that I will work hard to overcome. On those rare moments when I feel things are getting to much, I think of a parapalegic or someone just pulled from a horrible car wreck. Basically, anyone I have seen in the hospital when I am there whose suffering far outweighs mine and think "There but for the grace of God, go I". That knocks any self pity right out of me.
Posted 2/9/2013 11:04 AM (GMT 0)
Kierstin , I remember seeing a lot of people in hospital waiting rooms . Very few to my memory actually looked ill when in comparison to myself . Maybe I was too self absorbed to observe it at the moment . Knowing you feel sick and just looking miserable was something I had experienced and seen in others naturally as one might expect in life . Sickness took on a new meaning for me . People could see I was sick from 50 ft. away . It was like wearing a highly toxic sign strapped to your front and back in a public place . People recoiled and strangers children stopped me on a few occasions in grocery stores and enquired about me .

 As you say though you definitely develop a sense of how others who suffered their entire lives under those conditions must have felt . My parents taught me to never stare at folks who were visibly sick or mentally ill , Never making them feel uncomfortable . You cant hide this type of sickness with a smile . Sitting in the waiting room in the transplant wing became a fairly comfortable place for me to be , Around others who I never spoke to but felt they surely knew what these feeling were . A few looked just like me .

 Time came when I made it through the pre-evaluation process and actually sat in a room with the coordinator and another patient with her family . My wife and her family spoke but not long before she ( The patient ) began to hallucinate , scream ,yell and curse wildly . As quickly as she came to life she went unconscious . Her family was mortified and her husband got up and just left the room in tears . This went on the entirety of the meeting . It was later explained to my wife and I that she had the TIPS surgery done a year prior and was suffering from one of the possible ill effects of it . Severe Encephalopathy . I just had the surgery done one month prior myself and this shook me down to the core .

 She was in a wheel chair , incoherent and her family was visibly becoming unglued . My mind raced , Will this be me ? Will my family desert me ? Better yet will this be all my life consist of from this point on ? Hope that was delivered by TIPS was crushed in a instance . What do you say ? What can you say ? That woman haunts my thoughts to this day and I never saw her back at the hospital again .

 I have been so fortunate on so many levels when I look at how things could have been . Hard to get that sense when your in the middle as I mentioned earlier in another post . So few of us will fight , So few us are able to fight . Everything about this disease has been humbling from the beginning to this very moment . I have seen the woman in the wheel chair , Me and a host of others with worse or less problems in the few years past . Kierstin we are lucky , Blessed or whatever you may like to call it , We are alive my friend .

A. Ziffle

    

Posted 2/10/2014 1:16 AM (GMT 0)

A.Ziffle said...
 As most of us are all to familiar with the stress and mental hell this disease puts on patient and caregiver alike I thought some of you might benefit from something to change that tide . Everybody no matter the situation or how positive your outlook may be is susceptible to giving in and quitting , Of course more so those of us with chronic illnesses . Worry , Stress and just feeling out of control is a killer all by itself so trying to avoid as much of that as possible is medicine in itself . 

Hence we have to learn how to make chicken soup with chicken sh** . Now being a southerner I grew up eating a lot of different animals and stuff most of my Yankee brethren wouldn't touch , A lot of it is really tasty particularly with the right seasoning . Lets make this clear I'M not endorsing the consumption of chicken poop , It's a metaphor . My point being that it's essential for each of us to make the best of our own unique situation . The spices you use to make this soup edible is the key .

A lot of times I found myself obsessing over tiny issues and eventually turning them into mountains of despair . I picked up a book a friend gave me and tried to read it , Encephalopathy made it near impossible to focus my attention on more than 3 words at a time . I gave up and felt that surely I am losing my mind only to pick the book up again if for no other reason than to try and make others think I wasn't losing my sanity . Crazy people can't read , Right ? Oddly enough the more I stared at the hollow words on the page the more sentences began to make sense and sentences turned into paragraphs . My mind had gotten hooked into the short novel's story line .

I have looked back on those days early in my diagnosis and see a pattern of how my aptitude changed towards my illness . I began getting off the couch and feeling sorry for myself , I walked outside and thought about building things . Nothing hard of course , The swollen belly and lack of equilibrium limited any strain or tedious process but getting on all fours to dig a hole to plant a shrub or flower became a hobby . Fresh air , Sunshine and the worry of tomorrow faded away if for only that short time my hands was in the dirt . Pretty soon I was planning a spring garden .

 Many a minor task that drew my mind away from the demons of this disease became in hindsight a form of ingredient to making this less than tasty based stock ( Liver disease ) a pretty reasonable tasting soup . No , it would be nice to not deal with it at all but that isn't a option now is it ? Did you know that there are tons of real studies done about this same subject of mental stimulation and physical health . " If the mind wills it the body will follow ". Finding the ingredients that suit our individual taste is where the answer is at , This may be your work , Your animals , Your garden or just a pen with a blank piece of paper waiting to see your scribble . Well that's my take on it . And yes , Before some smart arse makes a comment about it . YES A PIG CAN READ !!!

 A. Ziffle

Thanks for the post.  It came when I very much needed to hear something like it.

Marburg

  

Posted 2/10/2014 4:21 AM (GMT 0)
This is too weird....how did you get Connie to post today? Old stuff carried forward?

Nice thoughts though.

Not the poop parts so much, the positive thinking parts.

ML
Posted 2/10/2014 10:12 PM (GMT 0)
Wow that is weird.
Posted 2/11/2014 3:50 AM (GMT 0)
The latest posts are 2-9-14, Connie's post is from 2-8-13. They're a year apart. It gave me a start when I first saw Connie's screen name.
Posted 2/11/2014 4:34 AM (GMT 0)
no coincidence this!!

Thus saith Connie...


and Ziff...


and David...


Was great rereading this..


Sandia
Posted 2/12/2014 11:07 PM (GMT 0)
Right now, Ziff is up to his curly tail in snow...
Posted 2/12/2014 11:14 PM (GMT 0)
Maybe we should have the next winter Olympics in South Carolina!
Posted 2/13/2014 12:13 AM (GMT 0)
Ziff is in North Carolina. South Carolina is still recovering from the War of Northern Aggression (as they like to call it).
Posted 2/13/2014 4:15 AM (GMT 0)
When I wrote this it sank to the bottom of the page like a lead brick. Stupid thing has taken a life of it's own I suppose. When it popped back up I read through the post again and like you all seen Connie's reply, It kinda startled me but noticed the date immediately. Who knows maybe Connies hanging out with Jim Morrison and Elvis on some secluded island paradise "Hey guys want to monkey around with my old village idiot on the forum."

All our critter friends are nestled quite warmly in the house. I storm smice storm we jumped out in the Yankee crusher and hit the roads in 4 wheel high, Drove into town for pizza and wings. We've got 4 inches of ice and snow/sleet, freezing to come tonight.

Ziff

Post Edited (A.Ziffle) : 2/13/2014 5:00:23 AM (GMT-7)

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