Re: Family Support and Understanding

October 6, 2001

Dear :

I am sorry you are having so much problem wtih your family

understanding. Unfortunately, this is a common problem with those

who are chronically ill with CP. I know about those central line

infections. They are horrible and you have had the " double whammy "

of having the infection hit your heart! That in itself, as you

probably are aware, can be life-threatening if not treated correctly.

I don't know the reason that we have such problems with people

understanding how we feel but it sure seems to be a common problem.

I am fortunate in that I have a husband who TOTALLY understands and

has been 200% supportive from day one. He understands the days when

I can barely get out of bed much less do anything (which is alot of

the time). The chronic fatigue with this disease is my worse enemy

right now. today, it is an effort to put my shoes on much less bend

over and tie them! As far as cleaning house, I cannot clean my own

much less help someone else. When I have a " spurt " of energy I

ususally get one 10 minute job done and I am exhausted. My house has

had to suffer. My hubby and I can only do so much. I have a two

story house which is a pain in the butt as it is. We are seriously

thinking of selling this house and getting something all on one

floor. The stairs are unbearable!

Please hang in there. Do what you can, don't try to do what you

can't and ignore the rest. I don't know the solution for friends and

relatives who don't get it, but I just ignore it as best I can. My

name aint Martha by any means!

Take care

Kaye

-- In pancreatitis@y..., " " <blessedbyhim_62236@y...> wrote:

> Does anyone get any moral support from their family? My sister

> thinks that I am supposed to be able to do handsprints with all

that

> is going on. I have been on IV antibiotics since september because

> of an infected central line and she cannot understand why I have

not

> been back to work yet? The infection hit my heart and has made me

> weak. When I was on tpn, she wanted me to come over to her house

and

> help her clean and then she couldnt understand why I was so tired.

> However, nobody in my family has offered to come over and help me

> clean my apartment. Thank the Lord that I have a friend that is

> willing to help me. I dont mean to ramble on, but please, if

anyone

> can relate, please let me know.

>

October 7, 2001

I'm sorry your family isn't being supportive. Hopefully your friend and this

group will replace make some of the missing family support. I have been

luckly in that ALL members of my and my husband's family have been so totally

supportive.

The only suggestion I have is that maybe your doctor can meet with the family

and try to explain and hopefully make them understand and increase their

support.

Good luck to you.

Betty

October 7, 2001

I'm sorry your family isn't being supportive. Hopefully your friend and this

group will replace make some of the missing family support. I have been

luckly in that ALL members of my and my husband's family have been so totally

supportive.

The only suggestion I have is that maybe your doctor can meet with the family

and try to explain and hopefully make them understand and increase their

support.

Good luck to you.

Betty

October 7, 2001

I'm sorry your family isn't being supportive. Hopefully your friend and this

group will replace make some of the missing family support. I have been

luckly in that ALL members of my and my husband's family have been so totally

supportive.

The only suggestion I have is that maybe your doctor can meet with the family

and try to explain and hopefully make them understand and increase their

support.

Good luck to you.

Betty

October 7, 2001

Dear :

Actually I have been thinking all night about the " house " thing! I

wish I had money to build one to my specifications! If I could find

a builder that crazy! ha-ha. Actually we have a ranch style house

but it is on an open " daylight " basement where two thirds of it is

above ground and the person who lived here before finished it off.

There is a family room, bedroom, office, laundry room, bathroom, etc

there and to me it is above ground. I can stay there most of the

time but sometimes you gotta go to the kitchen upstairs. I despise

the stairs. They are carpeted but stairs in general drive me nuts!

We are in no financial position to be trying to sell right now but

hopefully by this time next year we will be outta here!

You take care and ignore the turkeys. Actually with that central

line and that heart infection you really should not be cleaning house

at all! I know, I know, I did the same thing. Actually believe it

or not I cooked Thanksgiving dinner for 25 people one year with a tpn

line in! Actually when I aws on TPN I felt pretty good. Better than

right now, at least I had some energy. I remember dragging that IV

pole all over the kitchen hubby having a cow! Actually I had a lot

of help and I really wanted to do it or I would not have. They will

be lucky if they get a frozen dinner this year! ha-ha. Seriously,

Thanksgiving is my most favorite holiday of the whole year.

I know what you mean about the cat. I have a dog. I had " dogs " but

they all got old and died. My son last year decided mom should not

be alone (I liked it) and brought me this little 5 week old husky

puppy, white with blue eyes. She is now a 60 pound " MOOSE " who I

love more than life itself sometimes. She is white with black and

gray markings on her back (mostly white) and the biggest bluest eyes

you have ever seen. How can you not like that? Anyway, she

understands when I feel bad as did my other babies. Actually I like

animals more than people! ha-ha. They don't care if I look like crap

or the house is a mess or I burned dinner. They love me like I am!!

You take care and don't let the " turkeys " get you down!

Kaye

- In pancreatitis@y..., " " <blessedbyhim_62236@y...> wrote:

> Kaye,

>

> Thanks for your understanding. Like you, I also clean whenever I

get

> a 10 minute spirt of energy. When I came home from cleaning my

> sisters place last night, I was exahusted in addition I have hurt

my

> right shoulder because I can only use that arm because my PIC line

is

> in my left arm. I am planning on going back to work next week

after

> the PIC line is out and my antibiotic infusions are over and my

> doctor releases me to go back to work. My job is being transferred

> to Nashville, TN so I will only be working for about one week

unless

> I can take my vacation that last week. I seems my cat understands

my

> illness more than humans. She lays on my lap when I take the

> infusion and when I am feeling bad, she always seems to know

when.

> I really think you and your husband should consider a ranch style

> house if that will help you. You are lucky to have someone so

> understanding.

>

> > > Does anyone get any moral support from their family? My sister

> > > thinks that I am supposed to be able to do handsprints with all

> > that

> > > is going on. I have been on IV antibiotics since september

> because

> > > of an infected central line and she cannot understand why I

have

> > not

> > > been back to work yet? The infection hit my heart and has made

> me

> > > weak. When I was on tpn, she wanted me to come over to her

house

> > and

> > > help her clean and then she couldnt understand why I was so

> tired.

> > > However, nobody in my family has offered to come over and help

me

> > > clean my apartment. Thank the Lord that I have a friend that

is

> > > willing to help me. I dont mean to ramble on, but please, if

> > anyone

> > > can relate, please let me know.

> > >

October 7, 2001

Hi -

I'm sorry that your family has shown such a lack of support. I think

that's terrible. Why on earth would she want you to come clean her

house anyway? Is she sick herself or something?? sheeesh.

Most of the people in my family have no clue what's been going on with

me. I'm not sure why I haven't told them yet... I was talking to my

sister on the phone the other night and was thinking about it - the

fact that I haven't even told her, but it just feels kind of weird to

blurt it out in the middle of a conversation. We were talking

recently about my brother's wedding at the end of the month, and she

was saying how people might want to go out afterwards since it is

being held right in downtown Boston. I said " well, I probably won't

go, especially since I don't drink anymore " and she didn't even say a

word - lol - she probably thinks I'm an alcoholic who has gone sober.

My parents DO know, although I have kept them in the dark for the past

few months. I haven't told them about my other attacks, or my

doctor's visits, because i didn't want to worry them. but I did bring

them up to speed this week, because I may need them to drive me to my

EUS this coming Friday. They are very good about it, they are willing

to drive me anywhere or do anything I need. This past January I had

my wrist operated on, was out of work for a month with it, and about a

week after the surgery my brother and his girlfriend came up one

night, cooked dinner, and cooked a whole bunch of things that they

portioned out into those gladware thingies, and stored in my freezer

for me so I didn't have to worry about cooking for the next couple of

weeks. So I know if I needed them, they'd definitely be there.

I do have friends, tho, that simply don't understand. Or they make

light of it, saying don't worry, you'll get over it. I am often

tempted to print out a bunch of the messages I see on this board.. so

they can see it's not just me, there are other people who feel the

same way, or maybe even worse.. that this disease is serious,

physically, mentally, emotionally... and that it affects people in so

many different ways. Maybe you should have your sister read some of

these messages, then maybe she would see your health in a completely

different light. As far as cleaning her house, send her a clipping

from the phone book with the Merry Maids advertisement

> Does anyone get any moral support from their family? My sister

> thinks that I am supposed to be able to do handsprints with all that

> is going on. I have been on IV antibiotics since september because

> of an infected central line and she cannot understand why I have not

> been back to work yet? The infection hit my heart and has made me

> weak. When I was on tpn, she wanted me to come over to her house and

> help her clean and then she couldnt understand why I was so tired.

> However, nobody in my family has offered to come over and help me

> clean my apartment. Thank the Lord that I have a friend that is

> willing to help me. I dont mean to ramble on, but please, if anyone

> can relate, please let me know.

>

October 7, 2001

> Does anyone get any moral support from their family?

Dear ,

Trust me, you're not alone on this issue. I too have absolutely no

support when it comes to my sister, or my dad. My sister (who is 7

years younger) always depended on me to be the " strong one " , and the

problem solver. When my life took a nose dive, and my illness took

over, I was no longer able to be the person I once was. She has 2

small children and is married, and when my mom had a stroke, our

family was totally divided. That's when I became sick with CP, and

my sister had to kind of take over things, and become the " big

sister " . I really think she resents me for that in some way, and our

friendship is very much strained at this point. We fight constantly

now, do not see eye to eye on anything, and she feels that I have

become totally obcessed with my disease, and that I'm just a drug

seeking addict at this point too. My father also sides with her,

while my mom sides with me. My dad, as much as he is there to

support me financially and materially, he is not there to support me

emotionally, and neither he or my sister understands anything about

what I'm going through. I don't really think they want to. I've

been very hurt by them, and can't ever forgive them for what they've

put me through these past couple of years, meaning the lack of

emotional support. I cry almost every day over them.

On the other hand, I thank god everyday for my husband, who is my

best friend. We've been together 8 years, he's my best friend in the

world, and stands by me every inch of the way. He's always at odds

with my family because he doesn't do what they " want him to do " as

far as my care is concerned. They feel that I shouldn't be on all

these pain meds...that the pain meds and the disease have changed

me. Well, of course, they have, I'm not the same vivacious person I

once was, and I can't be depended upon at this time, I'm just too

ill. I also feel very guilty about this. I feel like I've left my

sister with the burden of dealing with all the hardships of our

family.

I know I haven't given you any answers, but I hope this my posting

will make you feel a little better, in that you know you're not alone

on this subject. If you ever need to talk one-on-one, please e-mail

me. I've got alot to say as far as this is concerned too, and could

use a good ear.

October 7, 2001