I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: angieskidney on February 04, 2007, 07:48:48 PM
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I was just sitting here thinking and I thought I would post something for discussion.
Any of you who have websites, do your family members go to it and show you support? Do you expect them to or wish for them to? Or do you care if they never even check your site out?
Just something I was curious about. Maybe I am just self-absorbed so I thought I would ask your opinions!
Post away! Anything :) :thumbup;
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My mom read smy blog and so do my sisters. It is an update for the family. However I will not post worrisome stuff if I do not know what it is. The Kaiser appointment with the surgeonis a no-no. My Mom would freak out.
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Hi Angie, Although this is not MY website (by that, i mean not created by me) BUT it is a big part of my life and my family knows that. When they do come over and i am on the pc, they will sit with me and i will show them around. It makes me feel good that they are interested in something that means so much to me. I show them all the pics and tell them who is who, i believe if they had the time to sit in front of the pc like i do they would be a member as well. They think it is cool how i have not only met the creator but i have had dinner with them and they have even spent the night at my house. :2thumbsup;
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As with Goofynina, this is not my website but my family knows about it. They don't come and look. I'm glad because I say things on here that they would not like to hear.
Angie I can understand you feeling bad, but Jeff reads your stuff and he is your family.
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I was just sitting here thinking and I thought I would post something for discussion.
Any of you who have websites, do your family members go to it and show you support? Do you expect them to or wish for them to? Or do you care if they never even check your site out?
Just something I was curious about. Maybe I am just self-absorbed so I thought I would ask your opinions!
Post away! Anything :) :thumbup;
You're not the only one Angie, I run 7 dialysis websites and my mom, dad, or my brother do not visit them. My mom and dad will ask "how is your site going, get any new hits?" ::) My brother, when we talked never went either and never asked about them. Even though he knew how important they are to me. It does hurt me sometimes but they really have NEVER been interested in my "dialysis life" or anything to do with it.
- Epoman
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You're not the only one Angie, I run 7 dialysis websites and my mom, dad, or my brother do not visit them. My mom and dad will ask "how is your site going, get any new hits?" ::) My brother, when we talked never went either and never asked about them. Even though he knew how important they are to me. It does hurt me sometimes but they really have NEVER been interested in my "dialysis life" or anything to do with it.
- Epoman
Ya exactly how I felt but that is why I wanted to hear what others had to say because I started to think that maybe it is normal for family to not be as invested in what is most important in my life but rather their own. I just had hoped they would help me raise money for the kidney foundation or buy bracelets, but so far it looks like Kitkatz will be the first!
As with Goofynina, this is not my website but my family knows about it. They don't come and look. I'm glad because I say things on here that they would not like to hear.
Angie I can understand you feeling bad, but Jeff reads your stuff and he is your family.
Thanks Rerun and everyone! Yes, Jeff is my family now and he is always on my site and even does a lot of the coding! You are so right!
And infact that is why we need the kidney dialysis sites we are on! Because where our families might not be able to handle a lot of what we go through, our sites here and the people on them are now our families!!
Thanks guys! :grouphug;
Edit: Actually my mom is trying but is just way too busy and doesn't really know how to be there for me emotionally and needs me more to listen and be there for her instead. My mom used to be interested in my "dialysis life" when I was living at home but since my parents split, it has been different. I think she feels a lot of guilt and is in denial.
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No one in my life gives a damn about what I do on the internet. My son however would share my seat no matter what I do just to be near me.
I don't have my own site yet but I spend most of my free time involved with IHD so it might as well be mine.
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No one in my life gives a damn about what I do on the internet. My son however would share my seat no matter what I do just to be near me.
I don't have my own site yet but I spend most of my free time involved with IHD so it might as well be mine.
lol I thought you woulda had a web site by now considering there is FREE Web-Hosting of websites for ALL "Premium Members" ;)
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I'm working on a web site for my business but haven't had time to work on it lately, Epoman will be hosting for me.
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I was just sitting here thinking and I thought I would post something for discussion.
Any of you who have websites, do your family members go to it and show you support? Do you expect them to or wish for them to? Or do you care if they never even check your site out?
Just something I was curious about. Maybe I am just self-absorbed so I thought I would ask your opinions!
Post away! Anything :) :thumbup;
I hve a profile on AOL under meadowlandsnj with pictures and websites I like and occasionally my family looks at it but I know they don't go to any dialysis related sites I go to. They seem uninterested and bored with the idea of it. Oh well.
Donna
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Dialysis is one unique experience. Unless you are going through it nobody else seems to be able to comprehend it. I stopped explaining years ago.
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Dialysis is one unique experience. Unless you are going through it nobody else seems to be able to comprehend it. I stopped explaining years ago.
Ya I think I am at that point .. especially with my last experience: My friend Marco comes to visit me in dialysis and asks a question about it. I start to answer it and he notices Al (another dialysis patient who has since had a transplant on Jan 26th this year) is looking in his direction so he walks over there and talks to him while I am still talking. My mom said she noticed this about him as well. She calls him self-absorbed. I think it was Sandman who explained to me that my health is sometimes complicated to explain (certain parts like diet and dialysis) and people just want a short direct answer.
What kind of questions do you get asked and how do you answer?
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The outrageously underinformed public (pity them) have the immense capacity to ask so many dumb questons just remembering them gives me headache.
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The outrageously underinformed public (pity them) have the immense capacity to ask so many dumb questons just remembering them gives me headache.
Oh ya you should definately check out this thread then ;) ( http://ihatedialysis.com/forum/index.php?topic=65.0 )
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Angie a little advice. I am 45 years old and I have never to this day feel accepted by some people including my family.
Now there are two ways of looking at this. Either I did something that makes them not accept me or take an interest in what I'm doing.
OR
They are just that screwed up and their opinion shouldn't direct my life's road or direction.
Only you know which one of these apply to yourself. I think Rerun said it the best
Angie I can understand you feeling bad, but Jeff reads your stuff and he is your family.
Just my :twocents; worth.
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My parent's don't log in to this website on their own, however if I ask them to come read something from here, they do. They have always been there for me with my health. They understand my diet and blah blah, and when an ignorant person comes along and thinks they know everything I usually don't need to correct them, if my parents are there, they will gladly do it. :lol;
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Angie a little advice. I am 45 years old and I have never to this day feel accepted by some people including my family.
Now there are two ways of looking at this. Either I did something that makes them not accept me or take an interest in what I'm doing.
OR
They are just that screwed up and their opinion shouldn't direct my life's road or direction.
Only you know which one of these apply to yourself. I think Rerun said it the best
Just my :twocents; worth.
Well as I get older I am finding that I just accept that is how my parents are and don't have unrealistic expectations but seek acceptance elsewhere, and I also discover that they ARE there for me but just in their own distant way. I know they love me and care and worry. Everyone has their own way of showing things.
My parent's don't log in to this website on their own, however if I ask them to come read something from here, they do. They have always been there for me with my health. They understand my diet and blah blah, and when an ignorant person comes along and thinks they know everything I usually don't need to correct them, if my parents are there, they will gladly do it. :lol;
Even though my parents are not like that (boy I wish they were) it is funny when my mom does stand up for me (very rarely so I remember it). Ah those are the times you never forget :)
Thx guys! :grouphug;
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I don't want family to go on this site, because it is the one place I can vent, rant and be myself. They could be hurt by some of my posts! This is my little comfort zone!!!
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I don't want family to go on this site, because it is the one place I can vent, rant and be myself. They could be hurt by some of my posts! This is my little comfort zone!!!
You are right Paris thats a good point that you make.
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I don't want family to go on this site, because it is the one place I can vent, rant and be myself. They could be hurt by some of my posts! This is my little comfort zone!!!
True. I would hold back at first but then when I realized they would never come on any kidney sites I decided I could open up a little more ;) But then I ended up closing up again because some people had misinterpretted things I said :( Sometimes you just can't win :P
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What kind of questions do you get asked and how do you answer?
"How are you? How's dialysis going?"
I'm fine. It's fine. Fine, fine, fine, fine, fine.
They don't want to know - and they don't understand when you tell them - so I've given up trying. I have a select few among my friends and family who want a real answer, and will listen when I give it. All the rest are a waste of breath when it comes to details.
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What kind of questions do you get asked and how do you answer?
"How are you? How's dialysis going?"
I'm fine. It's fine. Fine, fine, fine, fine, fine.
They don't want to know - and they don't understand when you tell them - so I've given up trying. I have a select few among my friends and family who want a real answer, and will listen when I give it. All the rest are a waste of breath when it comes to details.
yeah that is my friend Marco! LOL!! :banghead; Oh and all the people that I work with! They ask so I used to tell them. I mean geeze! If you ask don't you want an answer? I didn't realize they were just making conversation but really didn't want an answer .. :(
So I learned to not waste my breath neither but it took me awhile to learn. Call me slow but I just didn't realize people were NOT interested in what I go through. I was so needy when it came to wanting to be understood that I would go around and explain my situation to those that seemed interested figuring that I was spreading awareness (maybe that came from my mom being like that when I was at the children's hospital and talking about what I was going through all the time and taking pics of every step. lol :-[ )! even here I was telling people how I was born a sick child but they didn't know why until I was 9 they found out I had reflux.
But eventually I learned that different people want to hear different things. My mom wants to hear all the details about the health aspect of it all but not about my financial burdens (non-medical expenses). My dad doesn't want details but likes instead to me able to look loving infront of his girlfriends and then just wants to know I am okay but that is all. No details. He likes to look like the "sickest one in the family" and will start talking about himself instead... My friends just want to hear that I am not going to die but no details or they get bored as they have never had anything remotely close happen to them. Other patients want information to help in the future and not to help rehash the past. I was still in the past until GoofyNina and Epoman helped me get my priorities straight. I am still learning how to improve my communication skills and how to make things happen in my life, but one thing I have noticed is, not everyone is interested in what we go through. Why should they be if they are healthy?
Usually people are not interested in hearing about Kidney Disease unless it has affected them in some fashion.
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I must say psychologically things have improved a lot. 30 years ago there was absolutely no venue to share your true feelings as a dialysis patient. You were surrounded by the wall of ignorance and indifference. Thank God for the online community!
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I must say psychologically things have improved a lot. 30 years ago there was absolutely no venue to share your true feelings as a dialysis patient. You were surrounded by the wall of ignorance and indifference. Thank God for the online community!
EXACTLY!! I think that is why so many patients have made websites (like I did) and then when Blogs came out that really boomed!
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We thank you and the likes of Epoman for doing what you do :thumbup;
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I use myspace for blogs and such, I don't see the need to make a website personally... although my mom always tells me that all that I have been through and at such a young age I could write abook about it. :lol;
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I use myspace for blogs and such, I don't see the need to make a website personally... although my mom always tells me that all that I have been through and at such a young age I could write abook about it. :lol;
My friend Brian who I grew up with and had kidney transplants around the same time in the same children's hospital has a blog as well and feels the same way as you do. I thought him and I could work together to make something better but he sees no need. I felt that he didn't care about spreading awareness but you can't push a person to have the same views.
A blog is an easy way to tell your story. It is more of a personal site that is much like a diary that you put on display for the public. A website is different because you can do so much more with it! Look at what Epoman has done: Forums, information, Q&A, games, clothing and bags and badges, and so much more! You can't do that with a blog!
But if you just want to make your own little personal home on the world wide web, a blog is an easy way to do it and keeps your family and friends easily updated on your health ;)
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IHD also has lots of advertisement so it gets lots of hits, I made a personal website on geocities a long time ago... nobody ever viewed it unless I gave the the direct link.... so what awareness was I bringing to the table? LOL... None.
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IHD also has lots of advertisement so it gets lots of hits, I made a personal website on geocities a long time ago... nobody ever viewed it unless I gave the the direct link.... so what awareness was I bringing to the table? LOL... None.
That's why it is good that sites like Epoman's IHD exsist! He knows the tricks ;) :thumbup;
I only know a little bit but he knows a lot about this (obviously lol). You can't just make a site and expect it to rate on the first page of all search engines. There is a lot of work involved and Epoman does that all so we can just come and enjoy the site! :clap;
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Yah I know... I know all about making webpages and what it takes... or used to anyways... I kinda moved to the medical field instead of computers... :lol;
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I guess I made my site as a way to get the support I was always looking for, but then I found sites better than mine and found the support from people who are interested (because they are going through the same thing) all in the same site! :grouphug;
And now I am kinda glad my family doesn't go to any of the sites or forums I do because I can talk freely without being judged ;)
Plus with someone else doing all the work on their site it is nice just to spend all my time just reading posts ;) lol
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My story is pretty interesting too.....my dear mother passed away 10 years ago, she was not only my best friend but my "cheerleader" in life, it would simply destroy her to see me going thru all of this kidney failure stuff, she would not be able to handle it. So four yrs after my mother passed, my father remarried, a wicked woman, I might add! Anyway, I got sick this past April 06, my father lives 12 miles away from me.....he has not come to the hospital to see me, he has not called, he has not sent me a card....EVEN a Christmas card this year...and I was stunned to find out he sent one to each of my daughters! Apparently, he "asks" about me, says my sibling. but how very strange....is it guilt....not being able to "talk" about my situation, very interesting. I also have an older brother, here in the same city as I ....who also has never made contact with me since I became sick, it's like I have leprosy!!!! and HE being the only full blooded relative of mine who "might" be a transplant consideration. I also have a younger brother , who was diagnosed with PKD a year ago....and I scare the HELL out of him....I am a look into his future and he does NOT want to see it!....but we talk on the phone every now and then. They say, when life goes bad.....you find who your REAL friends are....that would be true of family too!
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My story is pretty interesting too.....my dear mother passed away 10 years ago, she was not only my best friend but my "cheerleader" in life, it would simply destroy her to see me going thru all of this kidney failure stuff, she would not be able to handle it. So four yrs after my mother passed, my father remarried, a wicked woman, I might add! Anyway, I got sick this past April 06, my father lives 12 miles away from me.....he has not come to the hospital to see me, he has not called, he has not sent me a card....EVEN a Christmas card this year...and I was stunned to find out he sent one to each of my daughters! Apparently, he "asks" about me, says my sibling. but how very strange....is it guilt....not being able to "talk" about my situation, very interesting. I also have an older brother, here in the same city as I ....who also has never made contact with me since I became sick, it's like I have leprosy!!!! and HE being the only full blooded relative of mine who "might" be a transplant consideration. I also have a younger brother , who was diagnosed with PKD a year ago....and I scare the HELL out of him....I am a look into his future and he does NOT want to see it!....but we talk on the phone every now and then. They say, when life goes bad.....you find who your REAL friends are....that would be true of family too!
Wow I feel for you! Seems like they are all afraid but should be supportive! Well at least you now have IHD! :cuddle;