My weight is down and so is my appetite. It is so difficult to force food into your mouth when your mouth is not producing saliva. Chewing on bread becomes a chore - bite, chew, sip some water to wash it down. I seem to be a bit dehydrated. Besides my dry mouth, my eyes are not producing tears very easily. They are dried out and uncomfortable when I try to keep them open. Even excessive blinking does not bring about relief. I've been using TheraTears eye drops with little success. These symptoms and conditions could be because my sodium levels are low. I've been trying to down Gatorade and Pedialyte as much as possible to restore my sodium and electrolyte levels to normal.
I was hoping that I would be well on my way to a healthy, stable weight by now. It's 2-3 weeks since I was discharged from the hospital. Yet, still I have to fight - to force down food, to swallow pills, to deal with constant, nagging pain. Instead of healing, I feel my body deteriorating. Logically, I know this is what is going to happen. Emotionally, I have to deny this. I need to remain positive and I need to put all of my effort into making my body stronger.
I mentioned awhile back that I am now on hospice care. This means that most of the services I received from Dr. Moss at CINJ can now be taken care of at home. My nurse helps me with my pain management and solving any other symptoms that may come up. I also got an awesome, adjustable hospital bed. I've wanted one of these for a long time. If I do begin to recover, I can come off of hospice again and return to CINJ for treatments. It's hard for me to see that happening from the shape I'm in right now (very skinny and weak) but stranger things have happened. I have a great support team pushing me in that direction. My doctors and nurses are constantly looking at ways to make me feel better and stronger. My girlfriend and mother are fearless about forcing fluids, foods and love down my throat even though I'd much rather follow my body's natural signals, however harmful they might be for me.
So, to clarify, hospice care does not mean I'm on my death bed. Currently, I am weak physically (and probably emotionally too) but I am going to fight. Your support means alot to me.
That's the spirit, Johnny. It may be an uphill battle, but you're a hiker, right? You eat uphill battles for breakfast.
Posted by: Moorhead | September 22, 2009 at 10:47 PM
You ALWAYS have our support. Heard you had a nice afternoon today out sailing. Hopefully it lifted your spirits - even if just for a few hours. We love ya - keep fighting the fight and keep writing.
Posted by: Aunt Donna | September 24, 2009 at 07:07 PM
We're with you my man...
Posted by: Jon Thomas | September 24, 2009 at 09:21 PM
You are in our thoughts and prayers every day keep thinking good thoughts and keep writing. Love
Posted by: Erma & John Maciolek | September 29, 2009 at 09:59 AM
John....does ice cream sound appealing? Anything with tons of calories including, fat that goes down easy and may even taste good, too.
Hugs coming your way,
Marion
Posted by: marion schwartz | October 01, 2009 at 02:52 AM
JOHN PATRICK I MISS U SO MUCHHH IT KILLS ME EVERDAY I DRIVE BYE UR HOUSE. YOU HAVE MY BACK AND I WISH I KNEW THIS WHEN THE HOLE FAMILY FOUND OUT MY MOM DIDNT WANT ME TO HURT ANYMORE EITHER.. AND LIKE IT MAKES ME SO MAD BUT ITS THE PAST AND I KNOW YOU WOULD SAYY ITS IN THE PAST BUT I KNEW AND WOULD HAVE BEEN IN TOUCH I FEEL YOU WOULD OF SAVED ME SOONER I KNOW AGAIN PAST MY CHOOICE MY FAULT IM SORRY BUT THE HOLE TIME U WERE TRYING TO LIVE I WAS KILLING MYSLEF IM SO SORRRY I DONT KNOW IF U KNEW THAT BUT IF I WOKD HAVE BEEN TOLD AND KNOWN I FEEL IT COULD OF SAVED ME SOONER KNOWING WHAT HAS HAPPEBED BUT THE PAST IS OVER AND THIS IS PART OF MY WAY OF SAYING GOODBYE I MISSS U SO MUCH AGAIN SHUT UP KATE ITS THE PAST AND ITS NOT MY FAULT I UNDESTAND THAT AMDD THEN IF I CAME HOME WHEN I SHOULD OF AND DIDNNT MISS MY FLIGHT I WOULD OF BEEN ABLE TO SAY BYE BUT I KNOW YOUR BEHIND ME ALWAYS ANDD IM SO SORRYORRY U WERE IN PAIN I LOVE YOU SO MUCH AND IT STILL MAKES ME LAUGH WHEN I THINK BOUT UR GREEN CAR U THOUGHT U WERE ALL COOL JUST KIDDING AND I WAS ALL LITTLE LOOKING UP TOO YOU AS ALWAYS AND SAW 'SEX WAX' I ALLL LIKEE EWWWWWWWWWWWW JOHN PATRICK EWWW AND WHAT IS IT FOR..TO SHY TO ASK LOL ALLL LITTLE AND SHIT THEN LATER DWN THE ROAD WHEN I GOT A LITTLE OLDER AND THEN STARTING SURFINGG I KNEW WHAT IT WAS AND TOLD YOUU. HAHAHA HOW FUNNY/ BLINK 182 ...YOUR ROOM UR HUGE BLACK LONG THING FILLED OF CD'S GOING TO SAM ASH TOGETHER MY LITTLE SIS;S LISTEN TO THEM.. PASSED DOWN FROM U; YOUR AN AMAZINNG PEROSON ANND UR A HUGE PART OF MY LIFE I LOOKED UP TOO YOU SO MUCH AND IM SO SORRY IF I EVER LET U DOWN UR MY STRENGTH I CARRY YOU AND THE FAM. ALWAYS IN MY HEART. I LOVE YOU GOODBYE JOHN PATRICK. <3 LOVE ALWAYS THE ONE AND ONLY KATE ;) I KNOW GOD AND U ARE WATCHIND DOWN AND THANK YOU JOHN PATRICK YOU SAVED MY LIFE.. LOVE YOU SO MUCH AHHHHHHHH I HATE THIS OK GOOD BYE; P.S. IF U GET THIS IM A HORRIBLE WRITER SORRY =) SEE YOU ONE DAY AGAIN DUDETTTTT
Posted by: KATE ZACCARO | June 24, 2010 at 02:28 AM
Impressive idea and information. I've been looking forward to see a lot more post from you here soon. Please keep this up to date. Good Luck!
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