Friday, August 31, 2012
read , aim, SMOKE
just so you that are not in the group or dont visit facebook much can see this is the wonderful smoke we get to deal with every day. It has been this way for about the past month, and sadly will probably be this way until we get some snow.
Awake again...
5am and i am awake, cant say i have really been to sleep yet. Hurting to much to pass out.
I hate those days, lay in bed for hours and when i should be getting up for the day is when i finally get
to sleep.
I guess part of that is because of working over nights for so long, i am a night person by heart anyway. I prefer the dark. Sunlight is to bright for my eyes, any time i am out in the sun i have to have sun glasses, and not the "look at me im cool" the cheap "those look solid black" type.
Its been long enough i will take another pain pill so i dont wake up like i did yesterday and open my eyes to pain. I dont mind the dull roars, those i am use to. It has been 13 months now since i have gone a day without pain, and i am betting it is going to be a few more years to go before it happens again.
I never truly appriceated the days when i woke up and felt great and full of energy ready to take on the day. They seemed special, but now looking back, i know just how special they were and would hope that one will happen again.
For those that dont know i am in a group on facebook for people with liver issues and ones that have made it to the other side and recieved their 'gift' as we call it. (transplant). It is the greatest bunch of people you could ever hope for. We talk about all aspects of what we all faced and are facing, and have some good times and some bad times. It is though a very real group. As in if you took the group and multiplied it by a few thousand it would give you the number of people that survive this dreaded thing, and ones lost.
Last week was rough, we lost 5. It kind of hits hard at times when you see ones you used to talk to slip away, and makes you appreciate what you do have, as bad as it may get at times.
Its nice to have a group where people are at the same place as you are, as well as others who have made it through. Learn a lot on the way.
So for those that dont know, today starts the local Fair. Oh Joy i am soooo friggin excited. NOT! lol .
Its so smokey out you can barley make out the ridge line on the mountians.
So i get to go walk around in the heat and smoke causing my self more pain half the evening while the kids enjoy the rides. The things you do for kids, should be illegal. *LOL*
So its off to try to get some rest for me.
I hate those days, lay in bed for hours and when i should be getting up for the day is when i finally get
to sleep.
I guess part of that is because of working over nights for so long, i am a night person by heart anyway. I prefer the dark. Sunlight is to bright for my eyes, any time i am out in the sun i have to have sun glasses, and not the "look at me im cool" the cheap "those look solid black" type.
Its been long enough i will take another pain pill so i dont wake up like i did yesterday and open my eyes to pain. I dont mind the dull roars, those i am use to. It has been 13 months now since i have gone a day without pain, and i am betting it is going to be a few more years to go before it happens again.
I never truly appriceated the days when i woke up and felt great and full of energy ready to take on the day. They seemed special, but now looking back, i know just how special they were and would hope that one will happen again.
For those that dont know i am in a group on facebook for people with liver issues and ones that have made it to the other side and recieved their 'gift' as we call it. (transplant). It is the greatest bunch of people you could ever hope for. We talk about all aspects of what we all faced and are facing, and have some good times and some bad times. It is though a very real group. As in if you took the group and multiplied it by a few thousand it would give you the number of people that survive this dreaded thing, and ones lost.
Last week was rough, we lost 5. It kind of hits hard at times when you see ones you used to talk to slip away, and makes you appreciate what you do have, as bad as it may get at times.
So for those that dont know, today starts the local Fair. Oh Joy i am soooo friggin excited. NOT! lol .
Its so smokey out you can barley make out the ridge line on the mountians.
So i get to go walk around in the heat and smoke causing my self more pain half the evening while the kids enjoy the rides. The things you do for kids, should be illegal. *LOL*
So its off to try to get some rest for me.
Thursday, August 30, 2012
up to now
ok, that about catches you up on the basics. There is a LOT that was not included, and if i think about it, i will mention it on further post.
I wish i would have started this a year ago. But i will try to post a day by day even if its just something small to keep everyone up to date on what is going on.
Today.. I HURT.. not sure why, but i woke up in some real pain this morning and it has not gone away yet. Although that is nothing unusual, i get those days. Its around 10pm, Delilah is sleeping and has been for a couple of hours, she works early in the morning and passes out half way through the evening. Cant say i blame her. Sadly i do to some days and i don't do much.
Time for another morphine pill. then off to bed, the kids are at their dad's and i have to go get them tomorrow at 1pm. Some weeks its a battle to wake up in time. So i try to get as much sleep the day before so i will be awake in time. I am not sure how school is going to work this year, a real worry for me. I hope i am able to get up every morning and get them going and off to school. But some days i don't wake up, some days i sleep until 3pm some days (very few) i sleep till 6pm. Part of the condition. Some times i go 3 days with no sleeping.. its a guessing game as to what tomorrow will bring, but at least i am here to experience it.. good or bad.
Ok, so that is it for tonight. This is where you can find the updated and info and ramblings of my shattered lil brain. when i get the urge i will post as things hit me and try to at least get a daily update. So bookmark this site and check back.
Love ya
I wish i would have started this a year ago. But i will try to post a day by day even if its just something small to keep everyone up to date on what is going on.
Today.. I HURT.. not sure why, but i woke up in some real pain this morning and it has not gone away yet. Although that is nothing unusual, i get those days. Its around 10pm, Delilah is sleeping and has been for a couple of hours, she works early in the morning and passes out half way through the evening. Cant say i blame her. Sadly i do to some days and i don't do much.
Time for another morphine pill. then off to bed, the kids are at their dad's and i have to go get them tomorrow at 1pm. Some weeks its a battle to wake up in time. So i try to get as much sleep the day before so i will be awake in time. I am not sure how school is going to work this year, a real worry for me. I hope i am able to get up every morning and get them going and off to school. But some days i don't wake up, some days i sleep until 3pm some days (very few) i sleep till 6pm. Part of the condition. Some times i go 3 days with no sleeping.. its a guessing game as to what tomorrow will bring, but at least i am here to experience it.. good or bad.
Ok, so that is it for tonight. This is where you can find the updated and info and ramblings of my shattered lil brain. when i get the urge i will post as things hit me and try to at least get a daily update. So bookmark this site and check back.
Love ya
Working on things, but getting no where.
My doc told me that later on i would need to do some fund raisers to have enough money for things that insurance and medicare did not cover. So i have been working on that aspect of it, while i am alert and able to.
My problem is i don't want to do anything that will cause a problem and make the money i get each month from disability to stop. So i have spent a LOT of time online doing research.
There are a few ways that this could work, but i have no idea which is the correct way that is approved by disability.
One is to set up a "special Needs trust fund" this will allow me to raise as much money as i can, without counting as income and affecting my disability.
The other i was told that fund raisers do not count as 'income' there for wont effect anything.
But call me a stickler i want to find out for sure which is true. I am currently working with legal aid to try to get to the bottom and figure out what i need to do, then i will move on to the actual aspects of fund raising.
I have a lot of ideas that many have suggested, and a few of my own.
But until i know for sure, i can not do anything, because there is to much at risk to find out later on i did a ooops and disqualified myself.
My problem is i don't want to do anything that will cause a problem and make the money i get each month from disability to stop. So i have spent a LOT of time online doing research.
There are a few ways that this could work, but i have no idea which is the correct way that is approved by disability.
One is to set up a "special Needs trust fund" this will allow me to raise as much money as i can, without counting as income and affecting my disability.
The other i was told that fund raisers do not count as 'income' there for wont effect anything.
But call me a stickler i want to find out for sure which is true. I am currently working with legal aid to try to get to the bottom and figure out what i need to do, then i will move on to the actual aspects of fund raising.
I have a lot of ideas that many have suggested, and a few of my own.
But until i know for sure, i can not do anything, because there is to much at risk to find out later on i did a ooops and disqualified myself.
Disability is finally approved...
FINALLY i got approved for disability. 10 months later. We managed to survive and keep bills paid for 10 months with just one income, my wife even has 2 jobs for a while to make sure they were paid. She is a special person to me. I know i would be a total mess without her. I definitely dont give her enough credit.
I am learning all of this as things go along.one of which is the govt is very very slow.
The other is that the govt dose not really expect you to 'live' if you are sick. I was approved for $920 a month. Sure its better than a kick in the butt, but realistically how is a sick person meant to get by on this amount? Even a healthy person, could not make it on this. House payment and electric eats all of what i get, and it takes more than that to live in this world. We dont qualify for any govt help, because on paper we make to much.
So i am excited.. at least something is going our way, will help us get by month to month if nothing else.
Although now i am left with the puzzle of what about my health? How do i cover all the test's and bills that are coming my way. Until now my doc has held off on doing any test unless she felt it was really needed, she knows our situation, and she is waiting until medicare or something kicks in. Sadly so are we... it has been 3 months now and we have got no news on any medical coverage. We filled out all the paperwork, took in all the required documents, and are sitting here waiting. Once again, the govt is Slow.
We all know this to be true, but when your life is on a time limit its a bit more frustrating.
So as of now we are doing ok month to month. Nothing left over to put in savings, or splurge on things, but at least we can cover the basic's and keep bills paid and have food in the house for a change.
Filling in the blanks...
Ok, a lot happened between the first gas doc meeting and now, but i will just hit the highlights and maybe go over stuff later on if i remember it and it seems important.
On a second meeting with my doc, she wanted me to get a upper GI. I was not sure exactly how this worked, since i have never had one before. Honestly my experience with doctors and hospitals has been very limited in my life. I had times where i saw a doc for a bit, then would not need them for years. I ran on the impression, if i felt healthy, why bother , spend $100 just for them to tell me i was fine.
Day of the upper GI. We arrive at the hospital, check in and sit and wait. I have to admit i was nervous. Not a fan of not being in control and trusting others. I have a real issue with it. But they just called my name, what can ya do. So i am loaded onto a gurney and wheeled back to the room. I kind of recognise the doctor, there are 2 of them, one male and one female, i have only seen the male doctor in a brief meeting. we get into the room and they ask me if i am ready. The doc injects the knock out drink into the tube in my arm and the nurse asked me to roll over on my side. To this day i am not sure if i ever made it on my side or not, things went black fast. Next thing i know i am in a waiting area with curtains, a nurses desk at the end my wife by the end of the bed and a nurse standing up behind the counter saying "wow he is waking up fast."
So now i have some pictures of my throat and passage way's.
next meeting with my doc she suggests that i get a MRI. So she set's the date and makes sure everything is ready.
I show up to the hospital, taken in a section with a few people in there with i'v's in their arms, others leaving, and they get me going. They give me 2 cups of warm watter with med's in it for contrast and tell me to drink all of it. YUCK! They could of at least put ice in it, or kept it in the fridge for a little while. So 30 min later i have it all down and they lead me back.
Lay me down in the machine and take their pictures. after completed i had to wait 30 min before i could leave so they could monitor for any adverse reactions to the contrast.
So my wife and i are sitting there playing on my laptop and i over hear 2 of the workers talking, one said to the other "we better get this off to the doc before this liver gives out". Talk about making a person nervous.
My doc's did not say much about the mri so it must of been as expected. I am still not sure if that is good or bad.
On a second meeting with my doc, she wanted me to get a upper GI. I was not sure exactly how this worked, since i have never had one before. Honestly my experience with doctors and hospitals has been very limited in my life. I had times where i saw a doc for a bit, then would not need them for years. I ran on the impression, if i felt healthy, why bother , spend $100 just for them to tell me i was fine.
Day of the upper GI. We arrive at the hospital, check in and sit and wait. I have to admit i was nervous. Not a fan of not being in control and trusting others. I have a real issue with it. But they just called my name, what can ya do. So i am loaded onto a gurney and wheeled back to the room. I kind of recognise the doctor, there are 2 of them, one male and one female, i have only seen the male doctor in a brief meeting. we get into the room and they ask me if i am ready. The doc injects the knock out drink into the tube in my arm and the nurse asked me to roll over on my side. To this day i am not sure if i ever made it on my side or not, things went black fast. Next thing i know i am in a waiting area with curtains, a nurses desk at the end my wife by the end of the bed and a nurse standing up behind the counter saying "wow he is waking up fast."
So now i have some pictures of my throat and passage way's.
next meeting with my doc she suggests that i get a MRI. So she set's the date and makes sure everything is ready.
I show up to the hospital, taken in a section with a few people in there with i'v's in their arms, others leaving, and they get me going. They give me 2 cups of warm watter with med's in it for contrast and tell me to drink all of it. YUCK! They could of at least put ice in it, or kept it in the fridge for a little while. So 30 min later i have it all down and they lead me back.
Lay me down in the machine and take their pictures. after completed i had to wait 30 min before i could leave so they could monitor for any adverse reactions to the contrast.
So my wife and i are sitting there playing on my laptop and i over hear 2 of the workers talking, one said to the other "we better get this off to the doc before this liver gives out". Talk about making a person nervous.
My doc's did not say much about the mri so it must of been as expected. I am still not sure if that is good or bad.
Meeting with the gas doctor..
So my appointment for my specialist has arrived.
We find the office and wait in the little room and after a little bit are allowed back to the patient room.
after a few min. The doctor comes in and greets us. The hospital down here had not faxed any information so she was trying to figure everything out. Finally she decided to just go call them and have them fax my records then. She came back with a stack of papers, and sat down and began to look them over.
After about 10 min or reading and looking at charts and ultra sounds and such. She looked at my wife and i and told me "well you are not off this planet yet." which was quite a surprising statement.
Then she told us that "you have 2-3 years left to live without a transplant.". Which i have to say, i dont care how many times you see it on tv, or in movies you can not understand how hard that smacks you in the chest.
Then her next words were "quit work today and go apply for disability. It is the only way we are going to be able to get you a transplant and make sure everything is covered."
She put me on a low sodium diet, and gave me a stack of prescriptions to get filled and start taking as well as Milk Thistle.
Needless to say, it was a very quiet ride home. I dont think the wife and i said 10 words the whole trip. (this being a 40 min drive).
We find the office and wait in the little room and after a little bit are allowed back to the patient room.
after a few min. The doctor comes in and greets us. The hospital down here had not faxed any information so she was trying to figure everything out. Finally she decided to just go call them and have them fax my records then. She came back with a stack of papers, and sat down and began to look them over.
After about 10 min or reading and looking at charts and ultra sounds and such. She looked at my wife and i and told me "well you are not off this planet yet." which was quite a surprising statement.
Then she told us that "you have 2-3 years left to live without a transplant.". Which i have to say, i dont care how many times you see it on tv, or in movies you can not understand how hard that smacks you in the chest.
Then her next words were "quit work today and go apply for disability. It is the only way we are going to be able to get you a transplant and make sure everything is covered."
She put me on a low sodium diet, and gave me a stack of prescriptions to get filled and start taking as well as Milk Thistle.
Needless to say, it was a very quiet ride home. I dont think the wife and i said 10 words the whole trip. (this being a 40 min drive).
Life is Great .... or so it seemed
Life is great!
I recently started a new job, which meant more money for the family, maybe paying the house off early.
Look into getting the wife a new car so i did not have to worry about her breaking down and surprise
expenses.
I had chosen to become a truck driver. Not the most glamorous job in the world, and it definitely sucks to be so far away from home for such a long time. But if we can stick it out for a couple of years we can make live much better and easier for us.
So i spent most of a summer in Idaho going to their school, (which i still owe for). Got my CDL and got my driver number and mentor.
First time out was for up 6 weeks straight. Which is a LONG time to be away from home, but once you earn your spot things get a bit easier and you can manage to swing by home more often.
We went to a lot of places, southern tip of texas, very eastern kentucky, down to pick up a load in Southern Ca. I have seen a lot of the country and already been in every state on the continental U.S. once, but i got to see a lot more of it.
Things were going good, getting use to the truck in heavy traffic. We had about 3 weeks in and i noticed that my feet were a little swollen, but i wrote this off to just a lot of shifting and getting use to things.
By the beginning of week 4 my feet looked like marshmallows and my legs and mid section were starting to swell a little. But i didn't think much about it. By end of week 4 my mentor was taking a few days off work and taking his wife to vegas, (over rated in my opinion.)
So end of week 4 he dropped me off near home and i got a few days of very needed home time. The next day my wife talked me into going to now care to get the swelling checked. While i was not excited about the idea, the last thing we needed right now was more bills. I gave in and we loaded up and went.
The Now care is part of the hospital here, after getting all the ppw filled out, i was shown the room, and waited for the doc to arrive. I never did see their doctor. A Nurse came in and checked me out and told me she was taking me to the E.R. which i considered to be a bit odd, but what do i know i'm just a dumb truck driver. *lol*.
So they move me to the E.R. and before i knew it the room was packed with nurses and doctors and equipment. They were running all sorts of test. They were worried that my heart was having issues and that was what was causing the swelling. Not the case, which is good. But what they did find out is that my liver was having issues.
So they set me up with a local doctor with a appointment in a few days and sent me home. The next day i went back to the E.R. to find the doc that was on duty and asked for some pain meds, i was not sure why, but i was hurting like crazy and did not get much sleep at all that night.
The appointment with the local doctor was short and simple. she looked at all of the information and told me my liver was having problems, and i had Hepatitis C. She set me up with a specialist and sent me home.
I recently started a new job, which meant more money for the family, maybe paying the house off early.
Look into getting the wife a new car so i did not have to worry about her breaking down and surprise
expenses.
I had chosen to become a truck driver. Not the most glamorous job in the world, and it definitely sucks to be so far away from home for such a long time. But if we can stick it out for a couple of years we can make live much better and easier for us.
So i spent most of a summer in Idaho going to their school, (which i still owe for). Got my CDL and got my driver number and mentor.
First time out was for up 6 weeks straight. Which is a LONG time to be away from home, but once you earn your spot things get a bit easier and you can manage to swing by home more often.
We went to a lot of places, southern tip of texas, very eastern kentucky, down to pick up a load in Southern Ca. I have seen a lot of the country and already been in every state on the continental U.S. once, but i got to see a lot more of it.
Things were going good, getting use to the truck in heavy traffic. We had about 3 weeks in and i noticed that my feet were a little swollen, but i wrote this off to just a lot of shifting and getting use to things.
By the beginning of week 4 my feet looked like marshmallows and my legs and mid section were starting to swell a little. But i didn't think much about it. By end of week 4 my mentor was taking a few days off work and taking his wife to vegas, (over rated in my opinion.)
So end of week 4 he dropped me off near home and i got a few days of very needed home time. The next day my wife talked me into going to now care to get the swelling checked. While i was not excited about the idea, the last thing we needed right now was more bills. I gave in and we loaded up and went.
The Now care is part of the hospital here, after getting all the ppw filled out, i was shown the room, and waited for the doc to arrive. I never did see their doctor. A Nurse came in and checked me out and told me she was taking me to the E.R. which i considered to be a bit odd, but what do i know i'm just a dumb truck driver. *lol*.
So they move me to the E.R. and before i knew it the room was packed with nurses and doctors and equipment. They were running all sorts of test. They were worried that my heart was having issues and that was what was causing the swelling. Not the case, which is good. But what they did find out is that my liver was having issues.
So they set me up with a local doctor with a appointment in a few days and sent me home. The next day i went back to the E.R. to find the doc that was on duty and asked for some pain meds, i was not sure why, but i was hurting like crazy and did not get much sleep at all that night.
The appointment with the local doctor was short and simple. she looked at all of the information and told me my liver was having problems, and i had Hepatitis C. She set me up with a specialist and sent me home.
Welcome
Welcome to the Journey. I hope by posting all of this, and people reading this it will raise awareness of how importan becoming a donor is. We have no idea how this is going to turn out, just taking one day at a time and together we will discover what the future holds.
There will be a lot of post in the beginning, and then it will slow down to one a day. Sadly i should have started this a year ago, but did not think about it. So i am starting now.
There will be a lot of post in the beginning, and then it will slow down to one a day. Sadly i should have started this a year ago, but did not think about it. So i am starting now.
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