What do you wish your family understood about kidney disease?

[devon]

Catears,

YES! good point! Very well said!

Devon

[Sunny]

I wish my family really understood what I go through when I contemplate the issues of:
1. What kind of dialysis should I do when I have to start?
2. Should I have a pre-emptive transplant and take my 59 yr old sister's kidney with High blood pressure?
3. Could I take a cadaver transplant knowing it requires me to think,in tha back of my mind, someone out there has to die young and healthy for me to get one?
4. Maybe I'll die first and these decision will never be made?

[kitkatz]

I wish my family would listen to me when I tell them what I want for my funeral and wake.  I tell them but they do not want to even think about it.  My mother will get one heck of a surprise when there is a party going on instead of a funeral service.

[okarol]

I wish my family would listen to me when I tell them what I want for my funeral and wake.  I tell them but they do not want to even think about it.  My mother will get one heck of a surprise when there is a party going on instead of a funeral service.

Write it down and seal it an envelope marked "Open only in the event of death."
That's what my mother in law did - and inside it said she wanted to be buried, not cremated; and she wanted me to have her jewelry.
Shocked me. She didn't feel they were big enough things to add to her will, but she wanted to be sure her 4 sons knew what she wanted.

[Mizar]

Done Wishing, I do Praying now........
I Pray that when People call and ask Where He Is and I say " Dialysis " they don't Sigh.
I Pray that when they call back later and ask for Him and I say " Sleeping " they don't Sigh.
I Pray that when they call on His off days and ask for him and I say " Sleeping " they don't Sigh.
I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.

[cherpep]

I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.

That was pretty good.  I would like my husband to know how much I appreciate everything about him - his never-failing understanding of my condition, his willingness to dedicate a good portion of his life to helping me with my treatments, his tender kisses on my forehead during the treatments, but mostly his devotion and love.  I am blessed.

[TynyWonder]

aaaawwww those are blessings for sure cherpep!  You truly are one blessed lady!!!   I am happy for you!!!   

~Tammy~   

[kitkatz]

I Pray, that when He does have a Good Day and I ask him to do something with me, He does not say " I'm too Tired " I Pray that alot.
This is Our Life Now. It is what it is. We enjoy all the Good Moments of every Good Day.

That was pretty good.  I would like my husband to know how much I appreciate everything about him - his never-failing understanding of my condition, his willingness to dedicate a good portion of his life to helping me with my treatments, his tender kisses on my forehead during the treatments, but mostly his devotion and love.  I am blessed.

Same to my hubby. God bless the lot of them for putting up with us!

[G-Ma]

Thanks okarol..that is what I will do since no one wants to know.

[paris]

You are right, Kitkatz, no one wants to talk about "plans".  I finally wrote things down, because I just needed to put things in order for my own peace of mind.  Once I did that, I could forget about it.   

[okarol]

  Related thread - thanks to the members who agreed to be quoted. http://ihatedialysis.com/forum/index.php?topic=10719.0

[thegrammalady]

i wish the uncle who thinks he knows all about it wourld realize that he doesn't and leave my mother alone!!!!

[kellyt]

I just wish they understood that just because I don't "look' sick and/or "act" sick doesn't mean that I'm not sick.  Same goes for scared, depressed, sad, anxious, etc.  I have found that I can hide those feelings pretty good even though I suck at hiding other feelings and emotions.

[G-Ma]

Don't you think we are all becoming good actors?

[idahospud]

all tho I'm not on dialess yet . i wish my family and Friends would just let me tock . it's like if I even think of my CKD or thy ask where I'm going and i say the kidnes dr. thy freek out I'm not diying today nor am i going to be healed ether. i  wish  thy got it CKD JUST IS good days and bad days .

[cherpep]

okarol - thanks for this thread and your summary.  I printed your quotes on my caringbridge site, and have received several comments from my family.  It was very informative to many of them - simple and informative.  Thanks!

[okarol]

okarol - thanks for this thread and your summary.  I printed your quotes on my caringbridge site, and have received several comments from my family.  It was very informative to many of them - simple and informative.  Thanks!

That's great! i would love to visit your caringbridge page, would you PM it to me if you don't want to post it? Thanks.

[okarol]

 

[Beth35]

I think people not understanding the extreme tiredness is one of the hardest things to deal with.  When I say I'm tired, I'm REALLY tired.  Even now, as I'm getting closer to dialysis again, I am SO tired.  I have a hard time getting everything done.  I am a single mom to two toddlers and to work all day with children and then come home and clean, and do baths and playtime and then when it's time to put them down I'm done for the day.  It gets harder and harder to keep up with it all.

I had an Aunt once tell me, "Gosh you were so lazy as a kid.  All you ever did was sleep your life away.  If you come visit me, you're not going to sleep all day!"    I could have slapped her.  I said, "Well let's see, I was in kidney failure."  Duh!

People just really don't get that and it sucks!

[monrein]

I think people not understanding the extreme tiredness is one of the hardest things to deal with.  When I say I'm tired, I'm REALLY tired.  Even now, as I'm getting closer to dialysis again, I am SO tired.  I have a hard time getting everything done.  I am a single mom to two toddlers and to work all day with children and then come home and clean, and do baths and playtime and then when it's time to put them down I'm done for the day.  It gets harder and harder to keep up with it all.

I had an Aunt once tell me, "Gosh you were so lazy as a kid.  All you ever did was sleep your life away.  If you come visit me, you're not going to sleep all day!"    I could have slapped her.  I said, "Well let's see, I was in kidney failure."  Duh!

People just really don't get that and it sucks!

Beth, people don't understand often because they are not informed.  As hard as it is, we must teach them about kidney disease.  A long time ago, I used to give   printed info (there's lots on this site) about the symptoms and effects of this illness.  We should'nt HAVE to educate them but it's in our own best interest and I've often been surprised by the turn around in some people's attitudes once they "get it".   Next thing you know, the formerly ignorant are explaining things to others. 

[Neo]

I wish they all understood the concept of limited energy.  Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after.  When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.

Couldnt agree more people just dont get it, one day i can have energy and than the next minute im tired as hell. I hate feeling like people are doubting me or even think im lying becasue Im young and i quote"look healthy'

[G-Ma]

jbeany and neo..you are both very right..I try to look like I can run a marathon and clean 10 houses in 10 minutes but that is just it...."""look"""..the minute someone looks away I am on the couch resting for the next """look"""     

[Wattle]

I just wish they understood that just because I don't "look' sick and/or "act" sick doesn't mean that I'm not sick.  Same goes for scared, depressed, sad, anxious, etc.  I have found that I can hide those feelings pretty good even though I suck at hiding other feelings and emotions.

Kelly .... this is sooo me. I wish my friends and family could live in my skin for just a day. I am sure they would then understand the crap I live with on a daily basis.

I just feel spent.   

[msleeter]

I wish they all understood the concept of limited energy.  Yes, I can spend a day at work, or cleaning the house - but only if I have a day to rest before and after.  When I say I'm tired, if means that if I keep going, I'm going to be fine while I'm with you, but I'm going to spend the next day puking.

I couldn't agree more about the limited energy! I also wish folks would understand the emotional effects. I'm so thankful my wife understands me!

[paddbear0000]

I wish my husband understood that I feel like crap and/or am very tired a great deal of the time, so I am going to be "bitchy" sometimes.