Re: I found out how my family feels about me... at least one part

[Guest guest]

Lauri,

With family like that who needs enemies. People can be so mean. You don't have to take that!!! I really feel for you and do understand. I have ended several relationships due to this and I know how hard it is. I read in Arthritis today a few weeks ago that with this disease you need to be very selfish with the little bit of good time you have. I agree. You have to be very selfish and take care of you first.

Lynn

-------Original Message-------

Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

i think we should call it selfirst instead as selfish has so many

negative connotations, and if you don't take care of you first, how

can you care for anyone else?

> Lauri,

> With family like that who needs enemies. People can be so mean.

You don't

> have to take that!!! I really feel for you and do understand. I

have ended

> several relationships due to this and I know how hard it is. I

read in

> Arthritis today a few weeks ago that with this disease you need to

be very

> selfish with the little bit of good time you have. I agree. You

have to be

> very selfish and take care of you first.

> Lynn

>

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

>

> Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not

intended to

> replace the services of a trained health professional or to be a

substitute

> for medical advice of physicians and/or other health care

professionals. The

> International Still's Disease Foundation is not engaged in

rendering medical

> or professional medical services. You should consult your

physician on

> specific medical questions, particularly in matters requiring

diagnosis or

> medical attention. The International Still's Disease Foundation

makes no

> representations or warranties with respect to any treatment,

action,

> application, medication or preparation by any person following the

> information offered or provided within this support form.

>

> ion by any person following the information offered or provided

within this

> support form.

>

>

>

>

>

[Guest guest]

-Hi Lauri,

I agree with what everyone is telling you. You must take care of

yourself with this wonderful disease. One of the hardesnt things

for me to learn is to say no. I have learned when I push it and do

more than I can handle, I end up with a flare. Stress is very bad

and that is exactly what they are throwing at you (and more). We

are always here for you and we will only sometimes make fun of your

tea drinking. I am a coffee addict myself...... take care. Vicki

In Stillsdisease , MZ67@a... wrote:

> Hi all

>

> Hope everyone had a wonderful time at the Philly convention. Wish

I could

> have been there.

>

> Well.. everyone has always said to me that the support of my

family is so

> important when fighting this stupid disease. I always knew that

my family wasn't

> the supportive kind but I was really hurt by what was said to me

in email

> last night.

>

> First a quick background. My mom had lived with me all my life.

When I

> graduated high school and started working full time I took over

the rent for our

> apartment, and when I got married and bought my first house at 21,

we invited

> her to live with us rent free. I figured she sacrificed enough to

support me

> and it was my turn.

>

> She was never easy to live with. I've said before that illness is

punished

> in our family. But when she started getting health problems, it

was a

> different story. Everyone was to drop everything and cater to

her. No big deal - I

> did what I could. Only problem was she would never follow doctors

orders and

> take medications and it would make matters worse. I have 2 older

brothers that

> called when they felt like it - maybe every other month or so, and

would come

> to see her when convenient - maybe 2-3 times a year even though

one only

> lives 75 miles away. They said that they were busy with kids

stuff like little

> league.

>

> As she got older she developed more and more problems but my

husband (second

> husband since then) and I continued to care for her and take her

wherever she

> wanted to go and include her in everything we did. The last 2 yrs

we were

> unable to leave her alone so we were unable to do anything

together like go out

> at night or take vacations together.

>

> She fell and broke her hip in April of this year. She went into a

> nursing/rehab home for a couple of months and my husband and I

went every day to see her

> and bring her whatever she wanted, even though at times she would

blame me

> for all that was wrong with her and would get quite mean. My two

older brothers

> would call occasionally and during the 2 months she was in the

home, one came

> to see her once and the other 3 times.

>

> At the end of her rehab they told us that she wouldn't be able to

go back

> home with me because I couldn't be there to watch her 24/7 since I

work - plus if

> I had a flare, it would be difficult for me to handle her (at the

time she

> couldn't walk - let me rephrase that, she wouldn't walk)

>

> The brother that lives closer to me said that he and his wife

would take her

> to live with them since his wife doesn't work. This was about 4

months ago

> and my mom has made huge strides in getting better and appears to

be more lucid

> and energetic than she has in the last 10 yrs.

>

> I always knew that SIL never believed that I was sick or at least

to the

> extent that I am sick. She would roll her eyes when someone would

ask how a

> doctors appointment went and I told them.. or if I was limping

because of my knee

> or ankle hurting badly. Then this latest fiasco with my CPK

levels and me

> being in tremendous pain to the point of my doctor taking me out

of work for the

> last 2 months must have been the last straw for her.

>

> I received an email yesterday from her. In it she told me that

she " is at

> her wits end " taking care of my mom. That I " need to come and

take her " for a

> week or so a month.. and the kicker - and this is a direct quote:

>

> " Lauri, if you say you are too sick. All I can say is tough. If

your

> Mother can get over pneumonia, over a hip surgery, fight this

dimentia she had, at

> 75 years of age, you can get up and get over yours. You need to

eat healthy,

> stop drinking so much tea and drink healthy stuff and slowly

excercise until

> you can excercise fast. It's simple logic. "

>

> Nice huh? Eat healthy? She has no idea what I eat. Stop

drinking so much

> tea? a couple of cups of tea a day is unhealthy?? Drink

healthier? My main

> source of fluid is either water, tea or skim milk... I don't even

drink alcohol

> and might have one coke at day IF that. And exercise fast? Does

she want me

> to make a flare even worse?

>

> The only family I have is them and my other brother's family - and

they

> haven't called or anything ever since my mom left.

>

> Who needs enemies.. I have family to take that role.

>

> Lauri

[Guest guest]

Lauri, why take the abuse? I am fortunate in that my immediate family can and does accept that I am not always the same "physical" or "emotional" person I was. I have had a few people try to tell me I could do something with them when I knew I could not. I simply lay down "my" law during times like that, and if they can't accept it, tough!

I sure wish the best for you, and don't let it weigh on your shoulders! I would certainly fire off a reply to your sister in law educating her about Stills and maybe adding a little bit of "salt" to the reply. If they can dish it out, they can take it too!

Kirk

I found out how my family feels about me... at least one part

Hi all

Hope everyone had a wonderful time at the Philly convention. Wish I could have been there.

Well.. everyone has always said to me that the support of my family is so important when fighting this stupid disease. I always knew that my family wasn't the supportive kind but I was really hurt by what was said to me in email last night.

First a quick background. My mom had lived with me all my life. When I graduated high school and started working full time I took over the rent for our apartment, and when I got married and bought my first house at 21, we invited her to live with us rent free. I figured she sacrificed enough to support me and it was my turn.

She was never easy to live with. I've said before that illness is punished in our family. But when she started getting health problems, it was a different story. Everyone was to drop everything and cater to her. No big deal - I did what I could. Only problem was she would never follow doctors orders and take medications and it would make matters worse. I have 2 older brothers that called when they felt like it - maybe every other month or so, and would come to see her when convenient - maybe 2-3 times a year even though one only lives 75 miles away. They said that they were busy with kids stuff like little league.

As she got older she developed more and more problems but my husband (second husband since then) and I continued to care for her and take her wherever she wanted to go and include her in everything we did. The last 2 yrs we were unable to leave her alone so we were unable to do anything together like go out at night or take vacations together.

She fell and broke her hip in April of this year. She went into a nursing/rehab home for a couple of months and my husband and I went every day to see her and bring her whatever she wanted, even though at times she would blame me for all that was wrong with her and would get quite mean. My two older brothers would call occasionally and during the 2 months she was in the home, one came to see her once and the other 3 times.

At the end of her rehab they told us that she wouldn't be able to go back home with me because I couldn't be there to watch her 24/7 since I work - plus if I had a flare, it would be difficult for me to handle her (at the time she couldn't walk - let me rephrase that, she wouldn't walk)

The brother that lives closer to me said that he and his wife would take her to live with them since his wife doesn't work. This was about 4 months ago and my mom has made huge strides in getting better and appears to be more lucid and energetic than she has in the last 10 yrs.

I always knew that SIL never believed that I was sick or at least to the extent that I am sick. She would roll her eyes when someone would ask how a doctors appointment went and I told them.. or if I was limping because of my knee or ankle hurting badly. Then this latest fiasco with my CPK levels and me being in tremendous pain to the point of my doctor taking me out of work for the last 2 months must have been the last straw for her.

I received an email yesterday from her. In it she told me that she "is at her wits end" taking care of my mom. That I "need to come and take her" for a week or so a month.. and the kicker - and this is a direct quote:

"Lauri, if you say you are too sick. All I can say is tough. If your Mother can get over pneumonia, over a hip surgery, fight this dimentia she had, at 75 years of age, you can get up and get over yours. You need to eat healthy, stop drinking so much tea and drink healthy stuff and slowly excercise until you can excercise fast. It's simple logic. "

Nice huh? Eat healthy? She has no idea what I eat. Stop drinking so much tea? a couple of cups of tea a day is unhealthy?? Drink healthier? My main source of fluid is either water, tea or skim milk... I don't even drink alcohol and might have one coke at day IF that. And exercise fast? Does she want me to make a flare even worse?

The only family I have is them and my other brother's family - and they haven't called or anything ever since my mom left.

Who needs enemies.. I have family to take that role.

Lauri

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Oh Lauri, I feel that same thing from some family members. Your Mother birthed you. It was her job to raise you in a responsible manner. If you are ill and unable to care for her, no one can expect you to do it. Does your sister-in-law take care of family business or does your brother have a say? He is his Mother's son, correct? Maybe it's time to surrender Mom to them. Talk to your doctor. Send them information on Stills Disease. Email the site and attach the Stills article. If it helps at all, you have family here. I know it's not the same, but it is support.

If your Mom is suffering from dementia, she may need a nursing home or other care center. Perhaps it's in her best interest. If you care for your Mom, she needs reliable care. Can you say you'll always be there and ready to assist her needs? Being realistic can hurts. I wouldn't want my care to cause deterioration of any of my children's health. It sounds as though you were kind and generous to your Mom when you were able.

My parents live 3 miles away and I haven't seen them for so many months. It's tiring keeping up a one-way relationship, so I stopped. I recall over 10 years ago when my sister said "I'm so tired of hearing about Barbara being sick!" I haven't seen her in about 8 years. I have great kids and grandchildren. I have a growing group of friends who are slowly taking the place of some family members. Bob and Carole are true spiritual parents to me. I love them dearly. I have a girlfriend who was abused from childhood through teenage years. She considers her family to be huge. They are friends she loves. Many of us have unique situations and aren't all fortunate to be born into wonderful, caring, loving families. If in your place, I wouldn't blame my Mother for her illness, but I would hold my healthy brother

responsible for her care and well-being.

Concern and stress over your SIL is not going to help your health. I've been through similar situations. I had to block my sister's email, as did my brother and cousin.

In the end, you have to decide how to handle family. I just wanted to share my experiences with you, my way of protecting myself, and let you know you aren't alone. The state of your health is a worthy purpose.

Take care, Lorie. Be kind to yourself,

Barbara

"Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose." Hellen Keller