Re: Family Support and Understanding

[Guest guest]

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.

>

>

[Guest guest]

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.

>

>

[Guest guest]

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.

> >

> >

[Guest guest]

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.

> > >

> > >

[Guest guest]

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.

> > >

> > >

[Guest guest]

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.

>

>

[Guest guest]

,

First, Happy Birthday. Second, thank you for your support and

understanding. My fiance dumped me after I had my first attack in

six years and after I got an infected central line. He is trying to

get back into my life now that I am getting better, but he is not

going to. Anyway, thanks for understanding.

> ,

> I am mostly a lurker on here and sometimes answer emails. I know

what you

> mean about moral support. My grandparents and aunt are like what

your

> sister is. If it wasn't for the support of my mother I don't know

where I

> would be now. My brothers worry about me but they have their own

lives and

> don't have time to help. My mom and I live together and she has

> fibromylagia, disks messed up in her neck as well as spine and

arthitis of

> the spine. We try to help each other out but it is hard sometimes.

> Especially for me. I am almost 31 (only 8 days from it) and I am

the one

> that should be taking care of my mom not the other way around at

times.

> When I have a major attack, I get so depressed because of worrying

about how

> the bills are going to get paid. I am working full time because

right now I

> am able to and as long as I can I want to. I don't have anyone

special in

> my life because the one guy I thought I was going to marry dumped

me because

> I stayed sick all the time and that was before I had my first major

attack

> in 3 years. I am now taking it one day at a time. I took a month

off to

> help a friend in CA and enjoyed myself and for the first time in

years I was

> basically pain free. Just this past month the pain is coming back

but I am

> having more good days than bad days lately. My prayers are with

you and I

> want you to know that you have my support as well as the people on

this

> list. I know we are all here for each other. The friend you have

is very

> special as well as you know. Keep them close.

> in Sumter, SC

> -----Original Message-----

> From: [mailto:blessedbyhim_62236@y...]

>

> Does anyone get any moral support from their family?

>

>

>

[Guest guest]

Dear ,

Sorry to hear about your BF leaving you because of your illness.

If that's the case then he never truly loved you as you should be

loved. Love is patient and kind and enduring. When I think of all

that my husband has went through,not because he had to, like me, but

that he CHOSE to endure because he loves me,I still can't believe it.

He could have left at any time and possibly had a better life but

stayed with me anyway,when I was sick alot,when I had migraines, when

I had gallbladder disease,when I had my teeth removed because of TMJ,

and when I kept having pancreatitis. That is love. There were times

when I told him to leave me so he could have a better life. He refused

everytime. Obviously,he doesn't love me because I'm a

vivacious,exciting woman(although I once was),his love must go way

past the physical and be about loving the person inside this fragile

shell. That kind of love is out there for you too. You just haven't

met the right person yet,but you will. Don't give up hope,not

everyone is shallow.

Keep reminding yourself that you are a worthy person who deserves to

be loved,and don't forget it.

I hope I don't seem to rough on you,I just want you to know you

deserve better.

Still in love in KC,

Amy

-- In pancreatitis@y..., roguekc@a... wrote:

> Dear ,

> I guess I missed this the first time around. Are you telling

us that

> your fiance dumped you BECAUSE you were ill, or that the two were

even

> related?? That really makes me furious. Granted, I can't possibly

know all

> the intricacies, nor both sides of the issue, but based on face

value it's

> really a very simple choice.

> I hope you will dump the creep like a bad habit.

> The prospect of somebody " loving " another when healthy, but

catching the

> next bus to an easier, more carefree existence, really makes my

blood boil.

> I find myself questioning the existence of " love " in that

proposition to

> begin with.

>

> Terry

>

>

> << From: [mailto:blessedbyhim_62236@y...]

> Sent: Tuesday, October 09, 2001 12:18 AM

> To: pancreatitis@y...

> Subject: Re: Family Support and Understanding

>

>

> ,

>

> First, Happy Birthday. Second, thank you for your support and

> understanding. My fiance dumped me after I had my first attack

in

> six years and after I got an infected central line. He is trying

to

> get back into my life now that I am getting better, but he is not

> going to. Anyway, thanks for understanding.

>

> >>

[Guest guest]

Dear ,

Sorry to hear about your BF leaving you because of your illness.

If that's the case then he never truly loved you as you should be

loved. Love is patient and kind and enduring. When I think of all

that my husband has went through,not because he had to, like me, but

that he CHOSE to endure because he loves me,I still can't believe it.

He could have left at any time and possibly had a better life but

stayed with me anyway,when I was sick alot,when I had migraines, when

I had gallbladder disease,when I had my teeth removed because of TMJ,

and when I kept having pancreatitis. That is love. There were times

when I told him to leave me so he could have a better life. He refused

everytime. Obviously,he doesn't love me because I'm a

vivacious,exciting woman(although I once was),his love must go way

past the physical and be about loving the person inside this fragile

shell. That kind of love is out there for you too. You just haven't

met the right person yet,but you will. Don't give up hope,not

everyone is shallow.

Keep reminding yourself that you are a worthy person who deserves to

be loved,and don't forget it.

I hope I don't seem to rough on you,I just want you to know you

deserve better.

Still in love in KC,

Amy

-- In pancreatitis@y..., roguekc@a... wrote:

> Dear ,

> I guess I missed this the first time around. Are you telling

us that

> your fiance dumped you BECAUSE you were ill, or that the two were

even

> related?? That really makes me furious. Granted, I can't possibly

know all

> the intricacies, nor both sides of the issue, but based on face

value it's

> really a very simple choice.

> I hope you will dump the creep like a bad habit.

> The prospect of somebody " loving " another when healthy, but

catching the

> next bus to an easier, more carefree existence, really makes my

blood boil.

> I find myself questioning the existence of " love " in that

proposition to

> begin with.

>

> Terry

>

>

> << From: [mailto:blessedbyhim_62236@y...]

> Sent: Tuesday, October 09, 2001 12:18 AM

> To: pancreatitis@y...

> Subject: Re: Family Support and Understanding

>

>

> ,

>

> First, Happy Birthday. Second, thank you for your support and

> understanding. My fiance dumped me after I had my first attack

in

> six years and after I got an infected central line. He is trying

to

> get back into my life now that I am getting better, but he is not

> going to. Anyway, thanks for understanding.

>

> >>

[Guest guest]

Dear ,

Sorry to hear about your BF leaving you because of your illness.

If that's the case then he never truly loved you as you should be

loved. Love is patient and kind and enduring. When I think of all

that my husband has went through,not because he had to, like me, but

that he CHOSE to endure because he loves me,I still can't believe it.

He could have left at any time and possibly had a better life but

stayed with me anyway,when I was sick alot,when I had migraines, when

I had gallbladder disease,when I had my teeth removed because of TMJ,

and when I kept having pancreatitis. That is love. There were times

when I told him to leave me so he could have a better life. He refused

everytime. Obviously,he doesn't love me because I'm a

vivacious,exciting woman(although I once was),his love must go way

past the physical and be about loving the person inside this fragile

shell. That kind of love is out there for you too. You just haven't

met the right person yet,but you will. Don't give up hope,not

everyone is shallow.

Keep reminding yourself that you are a worthy person who deserves to

be loved,and don't forget it.

I hope I don't seem to rough on you,I just want you to know you

deserve better.

Still in love in KC,

Amy

-- In pancreatitis@y..., roguekc@a... wrote:

> Dear ,

> I guess I missed this the first time around. Are you telling

us that

> your fiance dumped you BECAUSE you were ill, or that the two were

even

> related?? That really makes me furious. Granted, I can't possibly

know all

> the intricacies, nor both sides of the issue, but based on face

value it's

> really a very simple choice.

> I hope you will dump the creep like a bad habit.

> The prospect of somebody " loving " another when healthy, but

catching the

> next bus to an easier, more carefree existence, really makes my

blood boil.

> I find myself questioning the existence of " love " in that

proposition to

> begin with.

>

> Terry

>

>

> << From: [mailto:blessedbyhim_62236@y...]

> Sent: Tuesday, October 09, 2001 12:18 AM

> To: pancreatitis@y...

> Subject: Re: Family Support and Understanding

>

>

> ,

>

> First, Happy Birthday. Second, thank you for your support and

> understanding. My fiance dumped me after I had my first attack

in

> six years and after I got an infected central line. He is trying

to

> get back into my life now that I am getting better, but he is not

> going to. Anyway, thanks for understanding.

>

> >>