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To all who really care....
Yes Cf is a rough life for anyone who has it......
We all have lost someone we love to Cf.....
Every case is different, I lost a Brother 16 and a Brother 27.....
Some people live a short life some longer, 16,27.31,
I get the feeling sometime that people who have lost love ones kinda
treat people who do not have a bleek out look on life badly and want them
to feel as bad as they do and try and make the feel dumb for not doing so.
I happen to be lucky enough to make it to where I have,
But I do not wake up every day Depressed about it.
I greet each new day with a smile,because it might be my last,
but I don't focus on it.
I think if I did I would be in a rubber room on prozak,
Live and let live, The Glass IS half Full or You would not be reading this.....
Yes Cf is a rough life for anyone who has it......
We all have lost someone we love to Cf.....
Every case is different, I lost a Brother 16 and a Brother 27.....
Some people live a short life some longer, 16,27.31,
I get the feeling sometime that people who have lost love ones kinda
treat people who do not have a bleek out look on life badly and want them
to feel as bad as they do and try and make the feel dumb for not doing so.
I happen to be lucky enough to make it to where I have,
But I do not wake up every day Depressed about it.
I greet each new day with a smile,because it might be my last,
but I don't focus on it.
I think if I did I would be in a rubber room on prozak,
Live and let live, The Glass IS half Full or You would not be reading this.....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katyf13</b></i>
... If she's lived long enough to be a grandma, I'm sure she's (gasp!) heard bickering before and won't burst into tears. ...</end quote></div>
As a grandmother myself, I absolutely confirm this thought.
-LisaV
... If she's lived long enough to be a grandma, I'm sure she's (gasp!) heard bickering before and won't burst into tears. ...</end quote></div>
As a grandmother myself, I absolutely confirm this thought.
-LisaV
R
Renegade
Guest
Luke there are two great Cf centers I can give you. Ther is one in Bathesda, Maryland I don't have the phone # for that one and the one in Atlanta, Ga. The phone # there is 404-727-5728.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
( sad truth its the internet anyone can say anything)</end quote></div>
No you <b>fascist</b> that the GOOD thing about the internet.... anyone can post anything....
Free exchange of ideas is a good thing, remember?</end quote></div>
...Saved me from saying it.
Anyways. I also think that us older CF's (late 20's - 30's+) are quite jaded when it comes to CF. I understand new people (new parents, newly diagnosed, new friends of CF peeps, new boyfriends/girlfriends of peeps with CF, etc) need and should get answers regarding CF. I often forget there are still people being made with this disease and are in the same boat as my mom and myself were in 35 years ago. I think there needs to be a GIGANTIC FAQ on this site, and have it readily accessible to everyone via an easy to find link, and it be treated like a big FAQ about humanity for aliens, because being new to CF, you will have 10,000 questions and you are basically an Alien to it all.
I seriously generally avoid all the threads with questions from those who are new to it all, because I personally have been involved with, been involved in, and watched countless CF's die, shared ideas, stories, opinions, and helped live the lives of countless other young and older CF's. I'm frankly quite burnt out on it all. I came here just to share my find on oregano oil, because I feel it is a fairly cheap and easy way to help you smooth over your CF symptoms and more than likely increase your PFT's. After quite a few months beating that drum, i'm kind of burnt out on that also. I guess my personality doesn't lend itself well to real long periods of time trumpeting something or answsering the same questions over and over and over and over and over and over and over and over and over and over and over (deep breahth)....And over and over and over and over and over and over and over and over and over and over and over again.
It's noones fault, the new people need to know, and many of the older CF's like myself are jaded and burnt out. I do think it's understandable to be jaded and burnt out though, when you are 35 and CF has generally been your entire universe since you were picked and prodded to death from 3 months till now. They biopsied me in every form, till I was a quivering, "can't cry anymore", gasping for air, in shock little puddle of goo. I used to scream for every member of my family (including the dogs and cats) to come "save me" from the pain that I was going through. I have normal blood pressure in general, but as soon as I go into a doctors office, or even if someone wearing an all white outfit comes near me, my BP spikes like crazy. Mine is like White Coat Syndrome x 100,000 due to what I went through.
Can I be a valuable member to a CF forum? Damn straight, i've already contributed tons to help others. Just to clarify to others who "don't get me", i'll never say anything "mean" to someone who is new and is looking for answers about CF. As I said, I generally avoid those threads unless one of the many people on here who like to answer those threads, for some odd reason have not, and they rebump looking for answers. Then I will probably answer them. Now if someone else has long since answered them, sometimes in many different forms, and they don't appear to be the sharpest tack in the drawer, and especially if someone has mentioned something else off topic in that thread, there is a chance I might add a silly comment. Sorry that's my personality, and don't take it as an actual attack on anyone unless I clearly aim it at someone.
I have been doing the online message forum thing since personal computers were merely calculators with letters on them, i've ran my own very popular forums. I fully comprehend what the internet is like/about, and the same goes for forums. MANY people won't think like you, MANY people won't agree with you, MANY people will see things differently than you, MANY people won't have the same sense of humor as you, MANY people will take offense to something you say or others say...It's how the world, and the internet, IS.
I tolerant the anon trolls, I have no problem with anons asking questions they might not want their name associated with, but the anon flamer trolls are just real weak sauce (in many ways), and just like on countless other parts of the internet, are cowards. As soon as you go anon and attack others, your target does not have a name to associate the attack with, and in turn a large arsenal of their possible responses are taken away because they can't reference your name and past post history with your obvious mental defects as a forum user. It's like using predator armor and god mode in a FPS, and the other people are the bots.
I just thought I would further explain myself and leave it at that. No i'm not a big meany poopy head as some might feel, though I really do like evil genius villains <img src="i/expressions/face-icon-small-smile.gif" border="0">
I understand not everyone is the same, but sometimes on here a question is asked, and several people will answer the persons question, sometimes in very large expanded upon varied responses, using many sources to answer them. Or they will just show how they totally want to be spoon fed everything, and seem to not have any resourcefulness of their own. Like come here and ask something like "Guys I heard apples were good for you, what do you guys think?", instead of getting on google and doing the obvious of "Are apples good for me", and hit enter. I ran into a ton of that when I was offering up supplement information, and many times had to bite my tongue, but I realize by biting my tongue I stopped unneeded forum segmentation to occur, and i'm thankful for that.
So to summarize my long response: For those on here who dislike me or don't get me or think i'm a meany poopy head (btw that would have been a better villain group name than attack posse...The Meany Poopy Heads!), i'm an old jaded CF man. Have seen it all (except things that havent happened before obviously). I'm not a mean person, I am very humble and helpful to others in real life and on the internet, but when people appear to "not get it" after answered several times, and show no resourcefulness (not directly this at any particular past incidence, or new parents or anything like that), that is usually when I start to get silly, and maybe poke fun. If that is a character flaw, I will own up to it, we all have them, I guess that is mine. Also i'm a very playful person by nature, and extremely silly/sarcastic/sardonic. If I know I can make myself laugh, and maybe others laugh, and not directly hurt someone, i'll almost always go for it.
I am pretty much the same way in real life, and I have a ton of friends who are also good caring quality people who like me, so I guess i'm doing something right.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
( sad truth its the internet anyone can say anything)</end quote></div>
No you <b>fascist</b> that the GOOD thing about the internet.... anyone can post anything....
Free exchange of ideas is a good thing, remember?</end quote></div>
...Saved me from saying it.
Anyways. I also think that us older CF's (late 20's - 30's+) are quite jaded when it comes to CF. I understand new people (new parents, newly diagnosed, new friends of CF peeps, new boyfriends/girlfriends of peeps with CF, etc) need and should get answers regarding CF. I often forget there are still people being made with this disease and are in the same boat as my mom and myself were in 35 years ago. I think there needs to be a GIGANTIC FAQ on this site, and have it readily accessible to everyone via an easy to find link, and it be treated like a big FAQ about humanity for aliens, because being new to CF, you will have 10,000 questions and you are basically an Alien to it all.
I seriously generally avoid all the threads with questions from those who are new to it all, because I personally have been involved with, been involved in, and watched countless CF's die, shared ideas, stories, opinions, and helped live the lives of countless other young and older CF's. I'm frankly quite burnt out on it all. I came here just to share my find on oregano oil, because I feel it is a fairly cheap and easy way to help you smooth over your CF symptoms and more than likely increase your PFT's. After quite a few months beating that drum, i'm kind of burnt out on that also. I guess my personality doesn't lend itself well to real long periods of time trumpeting something or answsering the same questions over and over and over and over and over and over and over and over and over and over and over (deep breahth)....And over and over and over and over and over and over and over and over and over and over and over again.
It's noones fault, the new people need to know, and many of the older CF's like myself are jaded and burnt out. I do think it's understandable to be jaded and burnt out though, when you are 35 and CF has generally been your entire universe since you were picked and prodded to death from 3 months till now. They biopsied me in every form, till I was a quivering, "can't cry anymore", gasping for air, in shock little puddle of goo. I used to scream for every member of my family (including the dogs and cats) to come "save me" from the pain that I was going through. I have normal blood pressure in general, but as soon as I go into a doctors office, or even if someone wearing an all white outfit comes near me, my BP spikes like crazy. Mine is like White Coat Syndrome x 100,000 due to what I went through.
Can I be a valuable member to a CF forum? Damn straight, i've already contributed tons to help others. Just to clarify to others who "don't get me", i'll never say anything "mean" to someone who is new and is looking for answers about CF. As I said, I generally avoid those threads unless one of the many people on here who like to answer those threads, for some odd reason have not, and they rebump looking for answers. Then I will probably answer them. Now if someone else has long since answered them, sometimes in many different forms, and they don't appear to be the sharpest tack in the drawer, and especially if someone has mentioned something else off topic in that thread, there is a chance I might add a silly comment. Sorry that's my personality, and don't take it as an actual attack on anyone unless I clearly aim it at someone.
I have been doing the online message forum thing since personal computers were merely calculators with letters on them, i've ran my own very popular forums. I fully comprehend what the internet is like/about, and the same goes for forums. MANY people won't think like you, MANY people won't agree with you, MANY people will see things differently than you, MANY people won't have the same sense of humor as you, MANY people will take offense to something you say or others say...It's how the world, and the internet, IS.
I tolerant the anon trolls, I have no problem with anons asking questions they might not want their name associated with, but the anon flamer trolls are just real weak sauce (in many ways), and just like on countless other parts of the internet, are cowards. As soon as you go anon and attack others, your target does not have a name to associate the attack with, and in turn a large arsenal of their possible responses are taken away because they can't reference your name and past post history with your obvious mental defects as a forum user. It's like using predator armor and god mode in a FPS, and the other people are the bots.
I just thought I would further explain myself and leave it at that. No i'm not a big meany poopy head as some might feel, though I really do like evil genius villains <img src="i/expressions/face-icon-small-smile.gif" border="0">
I understand not everyone is the same, but sometimes on here a question is asked, and several people will answer the persons question, sometimes in very large expanded upon varied responses, using many sources to answer them. Or they will just show how they totally want to be spoon fed everything, and seem to not have any resourcefulness of their own. Like come here and ask something like "Guys I heard apples were good for you, what do you guys think?", instead of getting on google and doing the obvious of "Are apples good for me", and hit enter. I ran into a ton of that when I was offering up supplement information, and many times had to bite my tongue, but I realize by biting my tongue I stopped unneeded forum segmentation to occur, and i'm thankful for that.
So to summarize my long response: For those on here who dislike me or don't get me or think i'm a meany poopy head (btw that would have been a better villain group name than attack posse...The Meany Poopy Heads!), i'm an old jaded CF man. Have seen it all (except things that havent happened before obviously). I'm not a mean person, I am very humble and helpful to others in real life and on the internet, but when people appear to "not get it" after answered several times, and show no resourcefulness (not directly this at any particular past incidence, or new parents or anything like that), that is usually when I start to get silly, and maybe poke fun. If that is a character flaw, I will own up to it, we all have them, I guess that is mine. Also i'm a very playful person by nature, and extremely silly/sarcastic/sardonic. If I know I can make myself laugh, and maybe others laugh, and not directly hurt someone, i'll almost always go for it.
I am pretty much the same way in real life, and I have a ton of friends who are also good caring quality people who like me, so I guess i'm doing something right.
J
Jeanne
Guest
Something we ARE working on is exploring WIKI programming...you know Wikipedia?
A place here at our site where we can all add info and links so we can just point to the work and definitions we've already done. This is in response to Sean's suggestion for the FAQ section. It is something I'm very excited about. Look for it soon.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.brainstormsandraves.com/archives/2003/09/06/whats_a_wiki/">What is Wiki?</a>
Thanks Bill!
Jeanne
A place here at our site where we can all add info and links so we can just point to the work and definitions we've already done. This is in response to Sean's suggestion for the FAQ section. It is something I'm very excited about. Look for it soon.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.brainstormsandraves.com/archives/2003/09/06/whats_a_wiki/">What is Wiki?</a>
Thanks Bill!
Jeanne
Nice lon one there, Sean. Aree with every word (what a durprise).
You know if you want to be welcoming to both new parents and older adults there is no way you cna think of this as just one board - the two forums are a godsend as a result.
Totally diffeeent hereitable disease, but I watched 2 shows over the weekend on dwarfism.
One was about primordial dwarfism and a mother was saying after the diagnosis that right after the diagnosis she couldn't even say the word "dwarf" out loud. (Only time she had said "dwark" before was to talk about snow white and the 7 dwarves.) But she knew she'd have to so she could at least tell her family members what her kid had. So she used to stand in front of the mirror practicing-saying "drwarf" "dwarf" "dwarf" over and over aain - untill she desensitized herself.
The other show was the reality show about a married couple who are dwarves and who have a mixed bag of children. That show is showin everyone just gettingg on with getting on. Including themom climbing the shelves in the grocery store to get something on the top shelf and the dad making a sweet business our of selling a "dwarf kit" for hotels to help with accessibility for small people. And kids were taking the exam for trainer's permit to drive and passing - or not. And visitors were saying how they'd been afraid of the almost physical teasing they'd encountered from teenagers last week, etc. etc.
So here we've got parents who can barely say the words"cystic fibrosis" and then we've got the gallows humor thread of "What's good about CF?" and the practical threads vary from "how can I tell from ppop whether I'm doing the right thing about enzymes" to "This is how my husband died".
I mean, really, there are probably very few people who are really going to feel completely "comfortable" in all of these threads.
But more importantly what a beautiful range!
Thanks you whoever started this board for having a place for everyone - particularly for having a place for "jaded" adults. (There are all ready so many places for new parents to go.) I hope that we can use the two forum thing to keep a safe place for new parents who can't even say "CF" yet, but please don't ask adults not to be able to stuff it every where all of the time - to be less than "cynical" you might say - to "protect the parents".
There;s ot to be at least one place in the universe where adult Cers can hang out with each other and "be real" and not maudlin.
-lisav
whose computer has a lazy "G" and is just too lazy to go back and edit to add all of the missing "g"....
-lisav
You know if you want to be welcoming to both new parents and older adults there is no way you cna think of this as just one board - the two forums are a godsend as a result.
Totally diffeeent hereitable disease, but I watched 2 shows over the weekend on dwarfism.
One was about primordial dwarfism and a mother was saying after the diagnosis that right after the diagnosis she couldn't even say the word "dwarf" out loud. (Only time she had said "dwark" before was to talk about snow white and the 7 dwarves.) But she knew she'd have to so she could at least tell her family members what her kid had. So she used to stand in front of the mirror practicing-saying "drwarf" "dwarf" "dwarf" over and over aain - untill she desensitized herself.
The other show was the reality show about a married couple who are dwarves and who have a mixed bag of children. That show is showin everyone just gettingg on with getting on. Including themom climbing the shelves in the grocery store to get something on the top shelf and the dad making a sweet business our of selling a "dwarf kit" for hotels to help with accessibility for small people. And kids were taking the exam for trainer's permit to drive and passing - or not. And visitors were saying how they'd been afraid of the almost physical teasing they'd encountered from teenagers last week, etc. etc.
So here we've got parents who can barely say the words"cystic fibrosis" and then we've got the gallows humor thread of "What's good about CF?" and the practical threads vary from "how can I tell from ppop whether I'm doing the right thing about enzymes" to "This is how my husband died".
I mean, really, there are probably very few people who are really going to feel completely "comfortable" in all of these threads.
But more importantly what a beautiful range!
Thanks you whoever started this board for having a place for everyone - particularly for having a place for "jaded" adults. (There are all ready so many places for new parents to go.) I hope that we can use the two forum thing to keep a safe place for new parents who can't even say "CF" yet, but please don't ask adults not to be able to stuff it every where all of the time - to be less than "cynical" you might say - to "protect the parents".
There;s ot to be at least one place in the universe where adult Cers can hang out with each other and "be real" and not maudlin.
-lisav
whose computer has a lazy "G" and is just too lazy to go back and edit to add all of the missing "g"....
-lisav
and, I'm sorry, I shouldn't generalize.
Goint back to the dwarf thing. I cannot belive that I am the only person who upon giving birth to a dwarf would immediately be up on the web searching like mad and once finding out about the Annual Small People Conference would have made my reservations so my kid and I could go hang out with the adults who are comfortable in their own skins. ANd, onoce there, I'd expect to meet some people I liked and some I didn't, b ut I'd still be darn glad to meet everyone and confirm that the genetics of height has little to do with the formation of personality.
Because of the whole cross-contamination thing you can't do that with CF in the 3D world, but you sure can do it here on these forums.
Again, thank you.
-lisav
Goint back to the dwarf thing. I cannot belive that I am the only person who upon giving birth to a dwarf would immediately be up on the web searching like mad and once finding out about the Annual Small People Conference would have made my reservations so my kid and I could go hang out with the adults who are comfortable in their own skins. ANd, onoce there, I'd expect to meet some people I liked and some I didn't, b ut I'd still be darn glad to meet everyone and confirm that the genetics of height has little to do with the formation of personality.
Because of the whole cross-contamination thing you can't do that with CF in the 3D world, but you sure can do it here on these forums.
Again, thank you.
-lisav
and just one more though (I promise) and then I'll get on with the daily business of living.
No one likes bickering for bickering sakes.
But, really, I must confess, I sort of love that you adult CFers bicker sometime.
I mean I am old enough to remember when they wern't any adult CFers, and now there are so many of you - and of such a range of personailities and of age/lifestage that there are enough to create a forum-full of bickeriers.
There are folks up here who are just in their 20s and just setting up their adult lives, and those who are into careers, and those who are thinking of marrying, those wondering about kids, those who are older and worrying that their teenagers think they look weird with O2 (my teenage daughter just thought I looked weird, period, by the way), even older ones who tell the 20-year olds that they're "acting like children", and grownup kids missing their newly-deceased parents
Of course, there's going to be bickering sometimes.
Isn't that wonderful!!!
I mean, really, you want hope?
There's hope!
No one likes bickering for bickering sakes.
But, really, I must confess, I sort of love that you adult CFers bicker sometime.
I mean I am old enough to remember when they wern't any adult CFers, and now there are so many of you - and of such a range of personailities and of age/lifestage that there are enough to create a forum-full of bickeriers.
There are folks up here who are just in their 20s and just setting up their adult lives, and those who are into careers, and those who are thinking of marrying, those wondering about kids, those who are older and worrying that their teenagers think they look weird with O2 (my teenage daughter just thought I looked weird, period, by the way), even older ones who tell the 20-year olds that they're "acting like children", and grownup kids missing their newly-deceased parents
Of course, there's going to be bickering sometimes.
Isn't that wonderful!!!
I mean, really, you want hope?
There's hope!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>
Under "its a small world scenario" one of my employees in Virginia has a grandson that has recently been diagnosed with CF. I recieved an e-mail today from the manager at that location letting me know she could really use some support. He was wanting info on a good CF center and actually wanted to know a good forum she could join for support. Ironically enough he actually made mention that he wanted to find her one that was friendly because many message boards can really scare new families. I gave her a call and tried to ease her mind, apprehensively I served up our site for support. I was quick to break down the "rules" for parents of children with CF, never go into the adult site, only go to the family section, etc....Here I am telling a petrified grandmother of a "sick" 18 month old child she can use our site for support so long as she dosen't stray out of "her area". Is that really what we are going for in our honesty?
luke</end quote></div>
Hi Luke,
As a mother as a child with CF, I find I come onto the Adult site more often than any of the others. Some things I don't really want to hear but need to?! If you know what I mean.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
Under "its a small world scenario" one of my employees in Virginia has a grandson that has recently been diagnosed with CF. I recieved an e-mail today from the manager at that location letting me know she could really use some support. He was wanting info on a good CF center and actually wanted to know a good forum she could join for support. Ironically enough he actually made mention that he wanted to find her one that was friendly because many message boards can really scare new families. I gave her a call and tried to ease her mind, apprehensively I served up our site for support. I was quick to break down the "rules" for parents of children with CF, never go into the adult site, only go to the family section, etc....Here I am telling a petrified grandmother of a "sick" 18 month old child she can use our site for support so long as she dosen't stray out of "her area". Is that really what we are going for in our honesty?
luke</end quote></div>
Hi Luke,
As a mother as a child with CF, I find I come onto the Adult site more often than any of the others. Some things I don't really want to hear but need to?! If you know what I mean.
Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
I have been a viewer of this web site and have enjoyed all of your comments. I have a son with CF and so I have been interested to learn of any treatments that
might help his life. This is my first post. It is human to error and make mistakes and no two people are identical not even identical twins. A friend of mine once
told me that he had a horse with a broken ankle and was told he must shoot it.
Well he shot it and he then had a horse running around with a broken ankle
and a gun shot wound. All of you have interesting points of view and I am glad
to know a little bit about you.
Glen from Utah
might help his life. This is my first post. It is human to error and make mistakes and no two people are identical not even identical twins. A friend of mine once
told me that he had a horse with a broken ankle and was told he must shoot it.
Well he shot it and he then had a horse running around with a broken ankle
and a gun shot wound. All of you have interesting points of view and I am glad
to know a little bit about you.
Glen from Utah
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I have been a viewer of this web site and have enjoyed all of your comments. I have a son with CF and so I have been interested to learn of any treatments that
might help his life. This is my first post. It is human to error and make mistakes and no two people are identical not even identical twins. A friend of mine once
told me that he had a horse with a broken ankle and was told he must shoot it.
Well he shot it and he then had a horse running around with a broken ankle
and a gun shot wound. All of you have interesting points of view and I am glad
to know a little bit about you.
Glen from Utah</end quote></div>
I couldnt help but get upset & then laugh at your scenario!
I have been a viewer of this web site and have enjoyed all of your comments. I have a son with CF and so I have been interested to learn of any treatments that
might help his life. This is my first post. It is human to error and make mistakes and no two people are identical not even identical twins. A friend of mine once
told me that he had a horse with a broken ankle and was told he must shoot it.
Well he shot it and he then had a horse running around with a broken ankle
and a gun shot wound. All of you have interesting points of view and I am glad
to know a little bit about you.
Glen from Utah</end quote></div>
I couldnt help but get upset & then laugh at your scenario!
You all don't need to worry so much about what others think about the site. I think most of us who joined observed for awhile before getting our feet wet--or else jumped rite in. I joined because I was feeling scared and freaking over the thought of outliving my granddaughter! I think you guys are all one big, extended family--bickering, crying, holding onto each other the best you can. I have learned so much about cf from you all--even more so--I've learned about true courage. Thank you all for being yourselves.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Sorry, that was me KAYLEESGRANDMA. I finally escaped from being held hostage by my computer. I had to promise I'd never say anything bad about it again.</end quote></div>
That is very sweet. It does remind me very much of my own family. The bickering/makeup/bickering/makeup! LOL.....maybe thats why I consider everyone my extended family! ha
Sorry, that was me KAYLEESGRANDMA. I finally escaped from being held hostage by my computer. I had to promise I'd never say anything bad about it again.</end quote></div>
That is very sweet. It does remind me very much of my own family. The bickering/makeup/bickering/makeup! LOL.....maybe thats why I consider everyone my extended family! ha