Re: FAMILY AND FRIENDS

[Guest guest]

hi mary you did fine!!! i understand what you mean about losing friends, a

couple of my friends still stop in to see me because they know i don't get

out. so it's kinda feast of famin for me too. it took my family awhile to

understand that i was not telling tales. now if i could just get my insurance

company to understand again. kathy in il

[Guest guest]

Hi ,

It's hard to accept that life has changed, isn't it?

Sheree

[Guest guest]

> Hi . Nice to meet you. Sorry about your friends. Many of us here share

> the

> same problem of being left in the dust by so called ³friends². You can make

> plenty here.

> We all understand and know what you¹re going through. Family sometimes just

> doesn¹t get it.

> This disease makes us look fine, but they have no idea of the pain we go

> through or the

> sleepless nights.

>

> Answering for Debs --- You did just fine!!!

> Hoping to get to know you,

> a

>

>

>

>

> Hi everyone, Here i go . I thought i would give this posting stuff

> another try.(smile).I lost most of my friends after I became too disabled

> to work. My brother and one sister dont really believe i am doing so bad

> . What do they know? I know how you feel when people dont understand

> this disease. Have a good day everyone. Hey Debs, How did i do??? LOL>

>

> in Orlando

>

>

>

>

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

>

[Guest guest]

,

You did GREAT! And it didn't hurt a bit, I'll bet!!!! I only have the one

sister who thinks my whole problem is nothing.

So after many crying parties, I just treat my condition with her as nothing.

I don't tell her about dr appts, lab results, upcoming surgeries, new

medications, etc. It is just the two of us as our parents are both deceased.

Her new second husband doesn't help much either. When told of my condition,

his response was " Yeah, my Mom and Grandpa have that " . Yes, but HELLO, I am

only half their age! I get the same treatment from my husband's side of the

family also. So I tend to just keep a lot of my condition inside, because

with these family feelings it just happens to trickle down to my home level

also. I downplay going to doctors here and the need for my treatments, the

importance of taking my medication regularly and resting and eating properly.

I am more of a PITA (pain in the *ss) around here. The cats and dog get

better treatment than me! LOL. Now for the few friends that have stayed

with us thru sickness and unemployment (that is another stay away from

subject), we have only a few close friends. I don't even bring it up unless

I am asked very specific questions. I can be in a walker with a cast on my

leg and they will say how are you doing? " Fine " and that is the last

question they ask me. If they don't ask, then it doesn't become part of

their problem. I understand that the same scenario goes if you become a

widow or widower and all your " couple " friends forget who you are. People

are crazy, anything that looks like it could possibly get messy and they

MIGHT be asked to do something, they stay as far away from as possible. I am

fortunate that my husband is very visible in the church and during his year

long unemployment, they helped us out very much and they would say prayers

for me, but that was about it. If I wanted a pastoral visit, I had to beg

and arrange that way far in advance and then it was only the one, not another

one to follow-up or see if the pray worked or anything like that. Life is

truly GREAT!

Well, welcome , my dear, I am SOOOOO glad that got the confidence to

post. The rest of us here won't bite you and if they do, I will bite them

back!

Have a good Sunday, sweetie. Hopefully, the whole state of Florida will dry

out soon!

Gentle, tender, Florida angel hugs,

Debs

[Guest guest]

It's hard to accept that

life has changed, isn't it?

i'll agree with that one. i really want my life back, but realistically i

know that won;t happen. then the depression sets in again. how'd i get back

on the roller coaster??? i thought i was riding the bumper cars. kathy in il

[Guest guest]

Hi in Orlando..another on this list :-) I'll use my signature name

" marrielle " to avoid any confusion. You know I can see that I'm not the the only

one with invisible family and/or friends. I never expected it but now that it's

clear to me that it's a very common thing under our circumstances it's a little

easier. I hope you're having some nice, sunny and pain free days. By the way it

sounds like your brother and mine are on the same side of the fence...

marrielle aka:

From: mary parker

GROUPS (DOT) COM

Sent: Saturday, June 22, 2002 2:54 PM

Subject: [ ] FAMILY AND FRIENDS

Hi everyone, Here i go . I thought i would give this posting stuff

another try.(smile).I lost most of my friends after I became too disabled

to work.

[Guest guest]

My AC unit has to have a dedicated line put in for it and it should be done

shortly by my childhood friend whose livelihood is handyman. He does the best

work there is but as his friend, I sometimes have to wait while he takes care of

larger, more paying clientele. Small price to pay but worth it. The heat seems

to be coming down finally in more than two months and I am finally beginning to

feel human again.

As for my toe.....it has remained swollen for over the two months or so that it

was broken and I now have severe edema in both feet for which lasix and

Potassium has been added to the mix. I was given a exercise induced stress test

that showed a small blockage on the backside of the heart but the Cardio is just

going to watch me for now....visits every three months and the test repeated in

a year or sooner if changes warrant it. The Cardio has decided that I have COPD

also in looking over my health history and various reports and said it should

explain some of the extreme weakness, shortage of breath, and fatigue that goes

with the FMS but feels it takes me to a different level. He referred me to my

internist and she is seeing me on Thursday to decide if she will treat me or

refer me to a Pulmonary doctor. Never have smoked in my life. I also have one

lung that the bottom 1/3 is missing...no explanation. My mother, who was a

smoker for 60 years before she quit, had COPD also

the last 30 years of her life...severe in the last 7 or so. She, also, had the

lung abnormality. It is so wonderful to have doctors all the way around

care....and listen to me....Rheumy included. I never thought I would see the

day it would happen. One here and there but never a whole team that work

together.

Other than these small things that I can handle when my pleas are not falling on

deaf ears and going downhill with no explanation other than it's all in your

head, everything is going great. I returned my grandson to my daughter almost

a month ago and insisted she begin to be a mother to him and also to let his

father (who is a good man that was denied access to him for four years) have a

more active part in his life. I should have done it years ago because Richie is

responding so well to everything now. His dad now has him for the next two

weeks before school starts and Jeanna will be getting out of the Army around the

1st. I have a feeling Richie will be ending up more with his dad than not when

she moves back and thats a good thing as they really have a bond. Richie will

be 9 on the 25th. I feel as if a ton of weight has been taken off my mind an

shoulders. He will be safe now where before I had to protect him.

I know I don't post as often as I should but I read each and every one and

always have a general overview on what is happening with my other family. You

are all held up in prayer everyday and it is so good to know when my prayers

(along with others here) are answered. I spoke with Jennie today and Em tonight

and our Tess is having it a little rough (painful) and could still use every

prayer that is sent heavenward.

Will close for now. Take care, a and everyone in the " family. "

Jan =^..^=

a <paula54@...> wrote:

An angel's heart sees everything as it really is and accepts it with love.

~ Goldman~

[Guest guest]

Jan, so sorry that you've been living with that awful heat so long. I

hope your friend can come and help you with the line you need soon.

That's really good news that your medical team is finally a good one.

You deserve to have excellent care from doctors who will listen to you

and work with you and the other physicians. I'm glad you persevered.

I hope that everything will work out for Richie and Jeanna and Richie's

father. I'd be breathing a sigh of relief, too. Sounds like things are

turning around for the better.

Peace and better health to you!

Re: [ ] Family and Friends

> My AC unit has to have a dedicated line put in for it and it should be

done shortly by my childhood friend whose livelihood is handyman. He

does the best work there is but as his friend, I sometimes have to wait

while he takes care of larger, more paying clientele. Small price to

pay but worth it. The heat seems to be coming down finally in more than

two months and I am finally beginning to feel human again.

>

> As for my toe.....it has remained swollen for over the two months or

so that it was broken and I now have severe edema in both feet for which

lasix and Potassium has been added to the mix. I was given a exercise

induced stress test that showed a small blockage on the backside of the

heart but the Cardio is just going to watch me for now....visits every

three months and the test repeated in a year or sooner if changes

warrant it. The Cardio has decided that I have COPD also in looking

over my health history and various reports and said it should explain

some of the extreme weakness, shortage of breath, and fatigue that goes

with the FMS but feels it takes me to a different level. He referred me

to my internist and she is seeing me on Thursday to decide if she will

treat me or refer me to a Pulmonary doctor. Never have smoked in my

life. I also have one lung that the bottom 1/3 is missing...no

explanation. My mother, who was a smoker for 60 years before she quit,

had COPD also

> the last 30 years of her life...severe in the last 7 or so. She,

also, had the lung abnormality. It is so wonderful to have doctors all

the way around care....and listen to me....Rheumy included. I never

thought I would see the day it would happen. One here and there but

never a whole team that work together.

> Other than these small things that I can handle when my pleas are not

falling on deaf ears and going downhill with no explanation other than

it's all in your head, everything is going great. I returned my

grandson to my daughter almost a month ago and insisted she begin to be

a mother to him and also to let his father (who is a good man that was

denied access to him for four years) have a more active part in his

life. I should have done it years ago because Richie is responding so

well to everything now. His dad now has him for the next two weeks

before school starts and Jeanna will be getting out of the Army around

the 1st. I have a feeling Richie will be ending up more with his dad

than not when she moves back and thats a good thing as they really have

a bond. Richie will be 9 on the 25th. I feel as if a ton of weight has

been taken off my mind an shoulders. He will be safe now where before I

had to protect him.

>

> I know I don't post as often as I should but I read each and every one

and always have a general overview on what is happening with my other

family. You are all held up in prayer everyday and it is so good to

know when my prayers (along with others here) are answered. I spoke

with Jennie today and Em tonight and our Tess is having it a little

rough (painful) and could still use every prayer that is sent

heavenward.

>

> Will close for now. Take care, a and everyone in the " family. "

>

> Jan =^..^=