Re: Friends!

[Guest guest]

I can totally understand how you feel. I have found too that most people ask but really do not want to hear how you really are doing. You can see the glazed look on their faces, that they really do not want to hear so I just say I am hanging in there. You find out through times like this who your REAL friends are. I have 2 good ones that I found out were there for me during these tough times. You also find out which relatives are really concerned when they ask more questions compared to those that just do not want to hear. I also found out that my daughter did not want to hear anything and would never bring my grandson over I think that has hurt the worst. She said my condition was too depressing and did not want to know. I know I have done and been there for so many people like yourself but when the tables are turned, they are no where to be found. My daughter would never even call me to see how I was doing. So when you need a power of attorney for health you would normally think I could put my daughter but yet she does not want to talk or hear so you need to select someone else for that job. It makes you feel so all alone when you have illness that sort of isolates you from people.

KatSee what's free at AOL.com.

[Guest guest]

Stu I've had the same experience with "friends" I worked with. Now that I am officially off paper with the former employer my former boss doesn't even email me jokes. I have one good friend from 15 years ago that has always been there for me & me for her. One is sometimes enough. It sounds like you have the One set of friends that are truly friends. It's unfair how this disease takes so much away but if you look at everything like it's something you've never seen before and enjoy every moment it helps. But first you have to get a RANT SCORE FROM ROSIE! LOL I make jokes about the walk, the falls, the brain farts, even my diapers. It helps me cope. You've come to a good place here to vent & cope. And to get silly when you feel like it. grannylunatic@...

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[Guest guest]

Ok Im good with the stumbling, falling, slurring like a drunk, shaking

and having people stare, but when it comes to diapers, well to give

you anidea, my wife is still walking around with one hand drawn up

like a retard says whats wrong wit yer mout???? ANd taht just from

the first round of facial palsey, imagine how much fun shed get out of

a diaper at tht next office party!!!

Dignity is the illusion that the other guy doesnt know you pick your

nose when nobodys looking. (hey look! was that his hand scratching

his tuckus??????)

>

> Stu

> I've had the same experience with " friends " I worked with. Now

that I am officially off paper with the former employer my former boss

doesn't even email me jokes. I have one good friend from 15 years ago

that has always been there for me & me for her. One is sometimes

enough. It sounds like you have the One set of friends that are truly

friends. It's unfair how this disease takes so much away but if you

look at everything like it's something you've never seen before and

enjoy every moment it helps. But first you have to get a RANT SCORE

FROM ROSIE! LOL I make jokes about the walk, the falls, the brain

farts, even my diapers. It helps me cope. You've come to a good place

here to vent & cope. And to get silly when you feel like it.

>

>

>

>

> grannylunatic@...

>

> ---------------------------------

> Looking for a deal? Find great prices on flights and hotels with

Yahoo! FareChase.

>

[Guest guest]

Stu My daughter asked what I wanted for Christmas. I told her Depends. She wrapped them & we all had a good laugh when I opened them. I even made her take a picture of me with them. One of my grandsons calls me "Diaper Gal" like I am the newest superhero around. Their father was blind so being different was not unusual to them. I figure I might as well make jokes about it first that takes the sting out of anything anyone else says. It also opens up dialogs about our disease that is a mouthful to say & no one has heard about. Besides laughter is supposed to be great for healing. My body may not be perfect but I am gonna live every day as if it were my last. I don't know what song that was I heard that in but I like the attitude. That's my story & I'm sticking to it! grannylunatic@...

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[Guest guest]

Hi Stu: I found the same as most of my friends were from work. I had that job for 17 yrs, but had to leave because of my illness. Slowly one by one, they disappeared. At first as you said, they called and asked how I was doing, but eventually that stopped too. No emails, no calls. It hurts, doesn't it? I still have one good friend from work who calls me a couple of times a week. We have been friends since 1989. Another one emails me occasionally but that's it. It's lonely, at first I got depressed. But eventually I learned to live with it and realize who your best friends are too! I understand. Hugs, Debbielizzyandstu wrote: OK so I was gone for the day,

now Im back, sorry...I just had to blow off some steam, ever since I started gettingseriously ill Ive notice a steep decline in the number of friends whostop by or call, and todays just sealed the deal!In years gone past our house was the gathering place, people stoppedby regularly and the phone was always ringing, so much soin fact thatwe had to set a no phone day once a week so we could have a littlepeace around here. These were all frineds that called constantly, orcame by to eat, or just hang around, and we loved it, so who wouldnt?There is nothing like having your frineds around al l the time, andthen....Theyll call and ask how things are going, and Liz and I have learnedto just say fine, just because there was a time when these peoplereally wanted to know what was happening in our lives, is became clearthat they were uncomfortable hearing the truth, so we stopped tellingit to them. But that wasnt

enough because when they ouwld come over Iwould be sick and you could see in their eyes just how uncomfortablethey were being around a sick person, so they eventually stoppedcoming by and most of them stopped calling. Mind you these werentjust causal friends, these were people we had been there for over manyyears, when they were broke we helped, when they were sick we stoppedour lives to help them, when they lost someone we helped them takecare of all the things that have to be done, and we were always therewith a shoulder when things got bad, nope not causal friends, butevidentally fair weather friends, because as soon as things got roughfor us they scattered like roaches when the lights come on.So today, I had pretty much come to the realization that I had beenreduced to two firneds that still wanted to be a part of our lives,one is a 30 year old who I have been as close as a brother to foryears, hes the guy Im

going out with later this afternoon, and hasalways been steadfast, to the point that when Liz got overwhelmed lastmonth and had to have someone to talk to about whats going on, Jon andhis wife just showed up out of the blue and dragged her off for acouple of days camping by the river where she could blow off somesteam, and then when they got back took both of us out for a wonderfuldinner, these are real friends. The other is Rob, a young guy Iveknown since he was in high school who has always relied upon us sincehis parents passed away, weve been there for this kid a millionb timesand today when I called him because I havent heard from him in weeks,something that has never happened before, he asked the enevitablequestion, how are you feeling, so I answered truthfully figuring if hewas uncomfortable hearing the truth we might as well get it the hellover with, and sure enough he stuttered something about being sorryand

he had to go fix lunch, (at 1030??) so he got off the phone, and Inow know that I have only one friend left that cares enough to lookpast the health issues, and understands Im still the same person Ialways was, I just shake like hell now.Now I have to figure out who to be mad at, this damndable disease thathas stollen just about everything from my family and I, myself forbeing too trusting in these people, or my friends themselves for beingtoo weak to stand by us. God Im tired.Sorry to be such a downer, just had to get it off my chest as they say.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message

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[Guest guest]

This disease does take it's toll on our friendships-- and as most bad ships go-- the ones that were their for "themselves"- sink. Or is that stink?

It is maddening that on top of the loss of our health, our financial welfare and our dreams of what tomorrow was supposed to bring-- we find ourself doing this solo.

I too have been going thru some similar stuff. My best friend for the last 20 yrs is at her daughters wedding today-- and I found out about it last week. It's in Texas-- I'm in California. And this friend is also going to be a grandma in 3 months-- that means she's known about this for 4 months. It's not like I wasn't there for her and her daughter for the last 18 yrs-- they just forgot to tell me about these wonderful life changes.

(my husband) cut his knee with a chainsaw 2 weekends ago, and he is the worlds biggest sissy. Fortunately it was a flesh wound and no cartlidge or nerves or arteries where damaged, but he's done nothing but whine about it for the last 2 weeks. Damn, I wish my problem would heal and I'd be back to normal in 2-3 weeks. Oh-- he went backpacking for 20 miles the 2nd day after this injury. Bummer.

We ended up getting into a big blowout because he needs my compassion (I used it up in the 1st 10 minutes sitting the in the ER with him. . ) and sympathy. Ok, I agree- this could have been extremely serious, he is on high dose coumadin because of an artificial heart valve-- but the blow by blow account of what he did is so hard for me to listen to-- my mom got her hand cut with a chainsaw when I was 5-- so it brings out my PTSD. I told him that I'm sorry that I can't hold him as closely as he wants me too when he's hurting- and most of it because I can't hold me when I'm hurting-- and I've not got anyone to go too either.

So what do we do-- how do you handle these issues?

For me, I try to tell what I'm feeling and he turns it into a confrontation-- because of his own fear and feelings of inadequacy-- he can't fix it, and I know he can't. But what is so hard about wrapping your arms around your loved one and just being close. Those arms feel safe, and that's enough to get us thru the tough moments.

We don't need to be fixed- we need to be heard. This is generally a good line to start the conversation with.

Blessings, and know you are heard-- and held close to our hearts,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Sorry to hear about your frustrations Tracie. Yes, we share most of

them. Although I have to say I have made new friends, most of them ill

or caring for ill family. Seems that's what we have " in common " these

days. Well, so be it. If I can help them cope with the medical system,

or give them advice on coping skills, at least I haven't learned all

of this for nothing. I do have to pace myself and not commit to

helping too much, since I can't risk stressing but any little bit I

can give makes me feel more valuable.

Wanted to thank you for providing the link so that I could order the

book Beyond Chaos. It has really helped. Now if I can only get my

husband to look at it! He just rolled his eyes when I showed it to

him. He's a doer, not a talker. I've learned to live with the way he

is but am concerned about his burnout. You see, we are not the only

ones who lose friends, our spouses can too! And he only has one friend

but they like to " do " things together, not talk. Oh well.

[Guest guest]

Tracie, I truly understand. Lately I just ask my husband to lie next to me for closeness and let me be the one to guide any activity...even if it is just me gently rubbing his arm. He wants to grab at me but everything hurts too much. I ask him to let me guide but he says it is just too hard not to grab me. I tell him that is very nice to hear but, please, we have to take things slowly. I have to let him know on a daily basis my pain level and what hurts more or less on any given day. So I have to be the guide. I'm sorry about the chainsaw accident your husband had and I hope he heals well. But I can see your point of putting things in perspective. Geez, I wish I could take a hike,..a walk, a trip anywhere would be nice...lol! hugs S. ...isn't marriage

wonderful!?....lol.tiodaat@... wrote: This disease does take it's toll on our friendships-- and as most bad ships go-- the ones that were their for "themselves"- sink. Or is that stink? It is maddening that on top of the loss of our health, our financial welfare and our dreams of what tomorrow was supposed to bring-- we find ourself doing this solo. I too have

been going thru some similar stuff. My best friend for the last 20 yrs is at her daughters wedding today-- and I found out about it last week. It's in Texas-- I'm in California. And this friend is also going to be a grandma in 3 months-- that means she's known about this for 4 months. It's not like I wasn't there for her and her daughter for the last 18 yrs-- they just forgot to tell me about these wonderful life changes. (my husband) cut his knee with a chainsaw 2 weekends ago, and he is the worlds biggest sissy. Fortunately it was a flesh wound and no cartlidge or nerves or arteries where damaged, but he's done nothing but whine about it for the last 2 weeks. Damn, I wish my problem would heal and I'd be back to normal in 2-3 weeks. Oh-- he went backpacking for 20 miles the 2nd day after this injury. Bummer. We ended up getting into a big blowout because he needs my compassion (I used it up in the

1st 10 minutes sitting the in the ER with him. . ) and sympathy. Ok, I agree- this could have been extremely serious, he is on high dose coumadin because of an artificial heart valve-- but the blow by blow account of what he did is so hard for me to listen to-- my mom got her hand cut with a chainsaw when I was 5-- so it brings out my PTSD. I told him that I'm sorry that I can't hold him as closely as he wants me too when he's hurting- and most of it because I can't hold me when I'm hurting-- and I've not got anyone to go too either. So what do we do-- how do you handle these issues? For me, I try to tell what I'm feeling and he turns it into a confrontation-- because of his own fear and feelings of inadequacy-- he can't fix it, and I know he can't. But what is so hard about wrapping your arms around your loved one and just being close. Those arms feel safe, and that's enough to get us thru the tough

moments. We don't need to be fixed- we need to be heard. This is generally a good line to start the conversation with. Blessings, and know you are heard-- and held close to our hearts, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

Don't pick lemons.

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[Guest guest]

Tracie I hope your husband is doing better. How I miss having someone to hold(excluding the ex) Men can be such babies when they're the ones hurting! Sorry to all the guys in the group. When I get the new apartment I am going for my goal of being the weird old woman down the street with all the cats! grannylunatic@...

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[Guest guest]

Tracie, I cried when I read your story...I am sure we are all facing those same feelings...but unable to put it into heartfelt words such as those you have written. I saved them to my 'puter so I can reflect upon them when someone "hears me" but does not "feel me." Thanks so much!!!! Sincerely, Claretiodaat@... wrote: This disease does take it's toll on our friendships-- and as most bad ships go-- the ones that were their for "themselves"- sink. Or is that stink? It is maddening that on top of the loss of our health, our financial welfare and our dreams of what tomorrow was supposed to bring-- we find ourself doing this solo. I too have been going thru some similar stuff. My best friend for the last 20 yrs is at her daughters wedding today-- and I found out about it last week. It's in Texas-- I'm in California. And this friend is also going to be a grandma in 3 months-- that means she's known about this for 4 months. It's not like I wasn't there for her and her daughter for the last 18 yrs-- they just forgot to tell me about these wonderful life changes. (my husband) cut his knee with a chainsaw 2 weekends ago, and he is the worlds biggest sissy. Fortunately it was a flesh wound and no

cartlidge or nerves or arteries where damaged, but he's done nothing but whine about it for the last 2 weeks. Damn, I wish my problem would heal and I'd be back to normal in 2-3 weeks. Oh-- he went backpacking for 20 miles the 2nd day after this injury. Bummer.We ended up getting into a big blowout because he needs my compassion (I used it up in the 1st 10 minutes sitting the in the ER with him. . ) and sympathy. Ok, I agree- this could have been extremely serious, he is on high dose coumadin because of an artificial heart valve-- but the blow by blow account of what he did is so hard for me to listen to-- my mom got her hand cut with a chainsaw when I was 5-- so it brings out my PTSD. I told him that I'm sorry that I can't hold him as closely as he wants me too when he's hurting- and most of it because I can't hold me when I'm hurting-- and I've not got anyone to go too either. So what do we do-- how do you handle these

issues? For me, I try to tell what I'm feeling and he turns it into a confrontation-- because of his own fear and feelings of inadequacy-- he can't fix it, and I know he can't. But what is so hard about wrapping your arms around your loved one and just being close. Those arms feel safe, and that's enough to get us thru the tough moments. We don't need to be fixed- we need to be heard. This is generally a good line to start the conversation with. Blessings, and know you are heard-- and held close to our hearts,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.

[Guest guest]

, my grandkids say that I wear "pull-ups." The bad thing for me is that I never know when I really need them; I might go a week or more without a problem, then one morning I'm treading water. I hate to wear them every night just in case (some of you may learn more than you bargained for here) because the absorbent part starts to kind of ball up & get uncomfortable after a couple of uses. But they are too expensive to just toss if I stayed dry. What's a girl to do?!?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Friends!Date: Sun, 24 Jun 2007 03:27:09 -0700 (PDT)

Stu

My daughter asked what I wanted for Christmas. I told her Depends. She wrapped them & we all had a good laugh when I opened them. I even made her take a picture of me with them. One of my grandsons calls me "Diaper Gal" like I am the newest superhero around. Their father was blind so being different was not unusual to them. I figure I might as well make jokes about it first that takes the sting out of anything anyone else says. It also opens up dialogs about our disease that is a mouthful to say & no one has heard about. Besides laughter is supposed to be great for healing. My body may not be perfect but I am gonna live every day as if it were my last. I don't know what song that was I heard that in but I like the attitude. That's my story & I'm sticking to it!

grannylunatic (AT) yahoo (DOT) com

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[Guest guest]

Hi Rose,

I have this problem also, but it is not the urine.......for about

2 months, I would wake up every morning and had "messed"

myself and the sheets and the blankets, etc. It got to really be a

problem as I could not keep up with the dirty sheets --- let alone

my pj's! I also started wearing the "pullups" so I know what you

are saying. Fortunately, this has died down and for the past 3 or

4 weeks, I have been ok. Guess it was a little flare up....who knows???

Hang in there, we WILL beat this sarc monster!

Love ya,

Darlene

NS Co-Owner/Moderator

Re: Re: Friends!

, my grandkids say that I wear "pull-ups." The bad thing for me is that I never know when I really need them; I might go a week or more without a problem, then one morning I'm treading water. I hate to wear them every night just in case (some of you may learn more than you bargained for here) because the absorbent part starts to kind of ball up & get uncomfortable after a couple of uses. But they are too expensive to just toss if I stayed dry. What's a girl to do?!?

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Friends!Date: Sun, 24 Jun 2007 03:27:09 -0700 (PDT)

Stu

My daughter asked what I wanted for Christmas. I told her Depends. She wrapped them & we all had a good laugh when I opened them. I even made her take a picture of me with them. One of my grandsons calls me "Diaper Gal" like I am the newest superhero around. Their father was blind so being different was not unusual to them. I figure I might as well make jokes about it first that takes the sting out of anything anyone else says. It also opens up dialogs about our disease that is a mouthful to say & no one has heard about. Besides laughter is supposed to be great for healing. My body may not be perfect but I am gonna live every day as if it were my last. I don't know what song that was I heard that in but I like the attitude. That's my story & I'm sticking to it!

grannylunatic (AT) yahoo (DOT) com

Pinpoint customers who are looking for what you sell.

See what you’re getting into…before you go there