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  #121 (permalink)  
Old 02-14-2007, 11:33 AM
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For your daughter, Connie, you will have to be the protector and demand - yes, demand - understanding and compassion from the other members of the family. If they refuse to give it, then, as I said above, write them off to the degree possible.

We have written them off. They just aren't worth the effort and point blank, they just don't give a damn. I believe someday they will get what is coming to them.
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  #122 (permalink)  
Old 02-14-2007, 02:16 PM
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Elizabeth Bowen,

It was me who said this:
So surround yourself with people who love you, smile at you,give you a warm, comfortable, supportive and energizing feeling.

Now, when I was first diagnosed, no one quite understoond what I was going through..finally one day I asked them...did you ever have the flu? You know that ache, tired feeling, upset stomach, dizzy, and you just dont know what to do?

They said yeah...I hate that...I then said,
That is how every day of my life is..every day I wake up and feel like I have the flu.

Finally the lightbulb went off for them.

It does take your family and friends awhile to understand your disease.

You cannot "get over" this ailment..you might go into remission for awhile, let it be days, weeks, months...but it comes back...

Another thing I had to learn was to say NO, I cannot do that, you cannot depend on me, for I can have a flare up at anytime..So if it was a school thing, I would explain to them to have an extra person, incase I was ill..most intelligent people understand this.

The most difficult aspect of this illness is..we generally are healthy looking..I call it an invisible illness..I look good on the outside and there is a storm going on inside of me.

All that doctors can do is treat the symptoms...and some of the medicines make you feel worse, or bring on other problems...like insomina, restless legs, headaches, or a hung over feeling.

I try to do stretching everyday, eat healthy foods, get regular rest, and take vitamins. I cannot tolerate most meds, so I rely on hot showers, heating pads, rubs & patches like Ben-gay products, and tylenol. I also try to have the same sleep wake cycle.Eliminating stress is great too.

If I remember right, when I first got afflicted with Fibro, all I could do was sleep...now the problem is trying to achieve a good nights sleep.

Finding others with the same illness,- helps for they totally understand when you are not feeling well, or are crabby..or stressed out.

Hope some of this helps you.

Take what makes sense to you..and skip the rest. lol

Soft Hugs,
Janet
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  #123 (permalink)  
Old 02-14-2007, 03:02 PM
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Elizabeth and Connie - Janet has summarized many years of experience in a very good post. Take it to heart, and remember we here at FC will "be there" for you!

Cheerio!
Elizabeth

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  #124 (permalink)  
Old 02-14-2007, 05:17 PM
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Elizabeth, you bring such a wonderful wealth of knowledge to this thread, along with a spirit that overflows to others when they need a way to cope, you are like a life saver..you throw it out and we can grab hold of it! Thank you for that!

You are the best!

Janet
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  #125 (permalink)  
Old 02-14-2007, 06:11 PM
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Ditto!
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  #126 (permalink)  
Old 02-15-2007, 03:12 PM
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Awwwww.... t'anks! I just think we need all the positives we can find because the realities of life with Fibro is not always wonderful.

By the way -

Con Agra Foods has issued a warning that it is recalling all jars of Peter Pan Peanut Butter and Great Value Peanut Butter with product codes starting with 2111. They apparently are contaminated with Salmonella which can cause severe nausea, vomiting, diarrhea and prostration. Since it's near the beginning of the fast I thought it would be important to know.

Here is the webpage about it. You can also get news about it on Google.

http://tinyurl.com/yw398j

My positive take on this is, I'm glad we are Skippy fans...

Cheerio!
Elizabeth

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  #127 (permalink)  
Old 02-16-2007, 10:33 AM
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So Helpful!

Hi Everyone,
I have been reading all the posts and can't belive how helpful and supportive everyone is! Thank you Elizabeth and Connie for all your advise. I couldn't wait to get on here and read more. My internet has not been working for the last few days and I've been going crazy!

I had a really good day yesterday and got to do some housework for the first time since I can remember. I've stopped working and that in itself is taking stress of me, except I won't really think of the finacial burden yet, I'll leave that to my husband! Well today I've got cramps from my period starting and I can only imagine they will get worse like they always seem to do. I'm looking forward to just two days of feeling good!


Talking about family, I have a very supportive husband at home. Although, it's hard because I think I may have had this for many years and never was dx. So when I say I feel lousy, he's so used to hearing me say it, sometimes I don't think he hears anymore. He said I need to get new words to tell him when I "really am feeling bad"! Any suggestions? lol.

I also have a 23 year old son, my oldest who is living at home now and commuting to grad school, so he is very helpful, with encouragement! I have a 19 year old, "my baby" going to school in San Diego, (a boy) and my middle child is a girl, 22, also in San Diego working, she just graduated from college and deceided just to move across country because she love to scuba dive. We live in MA. I miss them both very much, which really added to my stress last year! They are very supportive via the phone!

I can understand though why people don't think that anything is wrong with us. I am not the type of person to tell someone else how I feel when someone says How are you today? Fine and a smile is usally my response, when it should be I feel like a truck ran over me and only slept last night in 2 or three hours incriments! So hold on to the support you do have and this forum seems like a perfect place to go also! I also rely upon my faith alot more than I did!

Thanks again everyone!

Peaceful Blessings
Deb
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  #128 (permalink)  
Old 02-18-2007, 11:44 AM
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Deb, I used to say fine too when asked how are you? Now I usually say, "Don't Ask"..or I say the "same stuff, different day."

Somedays, my answer is, "Everyday above ground is a GOOD DAY!"

Hugs, Janet
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  #129 (permalink)  
Old 02-19-2007, 10:53 AM
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My usual reply to "how are you" is: "I'm here!" Much of the time, that's about it - I'm there, but frequently not functioning real well. ;-)
On really bad days, I just say "one of THOSE days, dear." He knows, and makes every effort to help me out on those days. He's really good to me. He also knows that I *need* to do as much as I can for myself - I *need* that for my own self-esteem. Someone else may not need that, but I do. I'm not good at the balancing acts of fibromyalgia and RA - after all these years, I'm still struggling with it.

Cheerio!
Elizabeth

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  #130 (permalink)  
Old 02-20-2007, 05:12 AM
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Elizabeth, I m the same way...I need to accomplish something everyday. I take one task at a time..clean one kitchen drawer or cabinet. I try to break everything up into smaller tasks. I try to pick my best time of the day for some tasks, mornings are best for me to balance the checkbook, or follow a recipe..by 5pm..my brain can be pretty foggy! lol So I try to get all the food for the meals prepped, before dinner, and I have learned to cook much simpler..no more gourmet meals here.

What I want to ask everyone..do you have trouble opening jars? twisting lids off of water bottles? I was about in tears one day, when I could not do this..I tried one of those rubber things, and now I am wondering if I need one of those "jar openers"...or a wrench? lol

Soft Hugs,
Janet
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