What do you wish your family understood about kidney disease?

[Tinah1968]

Paddbear you are absolutely correct. People don't seem to understand that you get tired then everything starts to irritate the hell out of us... And we in turn become bitchy... I totally agree..... I wish my family would educate themselves about this disease so tha they know what I am ging through emotionally and Physically.

[twirl]

just because I found the energy to sweep and mop 6 1/2 rooms downstairs does not mean I will have the same energy tomorrow
if I have an energy day then I pay for it the next day 

[Tinah1968]

I helped a friend with a childs Birthday party on Saturday and they yesterday i felt like I could sleep all day.. I was exhausted. I used to only need 4-5 hours of sleep a night now I require 8-9 hours every night... If I sleep past 7am I feel bad becaseu I should be cleaning house or something else.

[okarol]

After 8 years of kidney disease in my family, my mom just now asked about getting a green awareness bracelet to wear. I wish they understood that this is part of our lives and their support would sure be nice. I know, better late than never.

[Wattle]

After 8 years of kidney disease in my family, my mom just now asked about getting a green awareness bracelet to wear. I wish they understood that this is part of our lives and their support would sure be nice. I know, better late than never.

Karol if you count your Dad (her husband) it is a lot longer than eight years. Oh and there are your siblings with PKD too.   

 

[okarol]

Yup - she's obviously been living comfortably in denial for a long time.

[kitkatz]

De Nial= the most populated city in Egypt?

[twirl]

no kitkatz    it is a country - western song

Queen of Denial --  I can't remember who sang it

[paddbear0000]

Twirl, her comment about Egypt is a joke. When someone makes a comment about being in denial, you say "de nial" is a river in Egypt (the Nile River). Haven't you ever heard that before?

[TynyWonder]

no kitkatz    it is a country - western song

Queen of Denial --  I can't remember who sang it

Pam Tillis?     I think................

[paris]

Knowing Twirl's sense of humor---I think she was joking right along with Kitkatz.  We are all in a sinking boat going down the River Nile.   

[paddbear0000]

There should be a rule that if you are joking, you must use a winking smiley! It is so hard to tell whether people are serious or not when you can't hear a tone of voice or see the expression on their face!! 

[okarol]

 

[Jean]

I have one friend I see every Tuesday night at Bingo. She always says how are you and I always say, pretty good, how about you. Then she tells every body to pray for me, because I am lying!!!! She has a distorted sense of humor also.LOL However, she also does not really want to know how I feel either.

[Des]

I REALLY wish that they could just feel how tired I am ... Just for a day... damn even a half an hour.

I cannot do "everything" any more.

[KICKSTART]

Everything and Anything .

[Des]

Yep!

NOTHING, NADA

[dwcrawford]

What an interesting question?
That it is a disease like any other and that I will cope with in but had rather not spend too much time talking about.  Do I want to be treated special?   Well,  didn't I always?  What do you think?

[Chris]

After reading a post, I want them to know how the Needle Stick feels without any "chicken juice" and then a few days or weeks on the machine so they can experience all the going ons in the clinic and have a hard time resting 

[pklipe57]

What I would like my family to understand about kidney disease?

That I may feel like doing something right now, but may have to change my mind, within the hour because I am totally out of energy.

That I have to respond to them - that yes, I am still doing dialysis three times a week for 3 1/2 hours at a time.


 

[Melissa]

I agree with everyone's issues...especially the tired thing.  I do not wish this illness on anyone, but sometimes I just wish my Mom, sister or certain friends could feel a minute of our sort of "tired".  I think they would finally cut me just a little bit of slack.
Pklipe57 - I have so many people ask me that too!!!  Isn't that crazy? 

[d-man]

I wish they could understand what it is to have a true permanent change in life, something that you can never take a brake from. having kids is the closest thing I can think of but you can always get a a babysitter and you know kids will grow up. I also wish that they could understand what it is to truly be scared of your own body .

[okarol]

I wish our family and friends could understand that even though Jenna has had a transplant, the reality is that kidney disease is going to always be a part of our lives. Her transplant is a blessing and she's been very fortunate that it worked out so well, but there are no guarantees about how long it will last.

[Maker]

I wish my friends and family would understand that if I get a transplant it is not a magic cure.  I wish they would understand that I will have kidney disease for the rest of my life, no matter what.

The other day my boss asked me if I woulf be done with dialysis in about 6 weeks or so     I forget sometimes that some people have no clue about all this.

I wish my parents didn't think they need to drive 3 hours just to rake my leaves...thanks but I am capable.  It just might take a little longer than it used to, but I will get it done!  And when I do, I will thank God for giving me the energy and the exercise 

[Jean]

I wish they would understand that my brain and my mouth are not aware that I have kidney disease. Because of that, I often say, oh, yeah, I would love to do that and when the time comes, I am too tired to go and hate to keep saying, I am tired.