Re: JUst wondering if your friends left you after rsd?

[Guest guest]

Feel rather like

some sort of stranger around friends that have known for years. Just

so sad to have that happens.

Joanna,

I know just what you are talking about. It's like, you want to fit in to this group and you can't. But you did at one time. I seemed to have lost most of my friends, I don't get out or to far away from home, unless hubby takes me. And they don't seem to want to make the time to stop by and see if you want to go shopping or go for lunch or what ever anymore. Maybe we depress them I don't know. I know sometimes I depress the hell out of myself, just being here by myself. If I try to drive to far, my hands and feet go numb from the vibrations, and then I get tired and start to get dosy while driving. Most of these friends are really long timers, like 25 to 30 years. I got one that we stay in touch, but guess what! she has fibro and we depend on each other...along with her step sister. Trish's elder mom tries to mother the 3 of us good thing we all live with 3 blocks of each other. lol.

huggs,

[Guest guest]

THanks....just got back from our "BIG" store the Super Sized Wal Mart and always talk to those that work their and ask them if they are having a great Jesus day and it never fails that when I leave their I feel so much better in my Spirit. Just brings lots of joy to my life. I will get better in my attitude because I want to enjoy my life and want those around me to enjoy being around me. So even though I whine much more than have ever done in front of Russ or anyone else, even doctors, guess I have let my guard down and found out that I was hurting inside for the loss of "me" much more than I thought. Will snap out of it as find it boring to be like this so much. Know it will come and go just needs more of gone than here, will work on that part. Thanks so much for your help, truly, I really appreciate all that you two have done for me.

s Momma

JoAnn

Re: JUst wondering if your friends left you after rsd?

JoAnn I learned very quicklyon this list that the one rule is we NEVER say we're sorry, we are all dealing with this best we can and do not have to say sorry to each other! So no more saying sorry!

We all wax and wane, when pain or depression are bad we come here to vent and get support. 2 weeks agoI was so very depressed when they stopped the stellate blocks I was just at the end of my rope, but people here made me feel better. Next time I am down, you can come cheer me up, OK?

See if you can get emial addresses, send them an e-card! Or have hubby address the envelopes and you just sign them. If getting out to get the cards is a problem, order a box of cards online. Or just send one card to the whole class at church letting you know you are thinking abt them and missing them. And don't be afraid to ask them for help or come for coffee, they WILL do this if you ask, don't let your pride keep you from reaching out, that's what God put us here for, to love and help each other.

As far as the wheelchair goes, some stores have the scooters which I think don't seem as "bad" as a wheelchair. But if you need the chair, think up ways to have fun with it! For everyone who asks you abt why you are using it, give a different made-up or glamourous condition. "I contracted beri-beri while doing mission work in Zimbabwe" I don't know if that helps, but WE are responsible for our additudes and if we need help, it is alright if we use it. This is time to feed yourself emotionally and spiritually so the Beast called RSD does not win!

You know we care, now you take care for yourself, OK?

Love and hugs,

Beth

PS Remember, we didn't ASK for this, don't be so hard on yourself, OK?

[Guest guest]

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

JoAnn I learned very quicklyon this list that the one rule is we NEVER say we're sorry, we are all dealing with this best we can and do not have to say sorry to each other! So no more saying sorry!

JoAnn,

Another reason for not saying that word is because it makes ya write "I do not say I'm S*rry" 50 times! lol (I'm the first one who got busted for saying the "S" word!)

As for the rest.....Beth is right. We never asked for this monster......we do not deserve this monster.

But, as with anything else in this world, we've got to learn how to live with it the best as we can, and hope that we can find a caring, compassionate, understanding doctor that knows what he's doing, to treat us along with it. Or, a doctor that is caring, that is willing to learn!

Right now, I luckily found a doctor in my area that does know how to treat Fibro, and is VERY caring....caring enough to prescribe me pain meds with no questions asked, no extra testing at all (like all the rest, who's looked at my medical records, and still wanted to repeat most tests).....

Otherwise, I would be having to leave my 3 kids with my Inlaws, which, my Father in law can't handle do to still being sick, for 2-3 days at a time each week just so that My husband can drive me 8 hours one way to Chicago for treatments. For a while, we was doing that once a week for 6 months straight. Now, I doubt if I could handle the drive.....plus, I don't have a vehicle that could make the trip anymore due to my car gave up the 2nd to the last trip to Chicago a year ago. I still have the car.....but we aren't going to chance taking it out of state!

But, I also see a Psychiatrist who prescribes half of my meds.

The best kind of help I've found though, to help me cope with this crap that life has dealt me, is my support groups......mainly this one right here!

Deb and Jo have pretty much saved my life and my sanity with this group!!! This is the very first group I joined 3 years ago.....and I'll be in this group till the day that they stop this group, god forbid!

I'm in quite a few other groups, but, to be honest, This is one of my favorite groups and one of the best groups by far!

Tonia

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[Guest guest]

I know what you mean about being too tired. But it is worth it if I

just go out with my friends, even for a little while. It helps to

keep us together.

-Sharon, NY

In RSD-CRPSofAmerica , " Beth " <bjones@n...>

wrote:

> JoAnn,

>

> I do know what you mean, it really stinks huh? I have a group of

women friends, we are really good friends and have been for several

years as our kids were in a playgroup together as toddlers. Now they

are in 2cnd and 3rd grades! And we get together just us moms now for

dinner, for coffee, we even have a sleepover at one of our homes or a

hotel 1 or 2 x a year. These are my best buds! Even so, while I

know I won't lose them, it is hard when I am just too tired to go,

and I think sometimes they feel like I don't want to be there with

them. When I am I try real hard not to bore them to death with all

the details. I know they can't really understand if they haven't

ever had chronic pain.

>

> There are a lot of people at my church who ask how I am doing, I

am on the prayer chain so many people are praying for me, which gives

me strength. They really don't understand either what this is, let's

face it, I had never heard of thoracic outlet syndrome or RSD till

this happened.

>

> I think one thing that happens is people know they don't

understand, and feel awkward cause they don't know how to help. And

they wd help if we ws ask. I am thinking abt printing off one of

those information sheets abt my conditions and placing it on the

bulletin board at church, so those who are interested can learn abt

it. And I am going to send some links to my Mama friends that they

can read when they have some time, nothing too long or technical tho.

>

> One thing I think we do is sometimes isolate ourselves from our

friends, and we shouldn't. Even if it takes an effort we need to go

and do things with them sometimes. But they need to know if you feel

bad you need to lie down or go home. ANd if we are in a bad flare

and can't get out, we can still keep in contact through emails, send

a funny joke or a note to ask about THEM.Just because we live with

this 24/7 doesn't mean they should, and we need to remember they have

needs and problems too.

>

> But the ones who don't understand or make an effort at all, they

were never real friends to begin with, so don't feel bad abt losing

them. Real friends stick by no matter what.

>

> Love and hugs,

>

> Beth

[Guest guest]

Exactly, plus it is such a mental health boost, to laugh, tell rude or corny jokes, catch up on each other's lives, talk abt how stupid SOME medical people are, and just enjoy being together. It takes energy to get ready and go, I am usually drained by evening, but I come home in such a better state of mind, it's like I filled up my mental health gas tank, you know? Even though the pain is always there,I appreciate now the small and ordinary things that I used to take for granted, or was just too busy to pay much attention too. Now any little bit of fun or positive experiences I have can keep me smiling through the pain, and on those days, I am the winner!

My friends are the best, but it took years to develop that closeness, over and above being acquaintances whose children happened to be in the same playgroup.

Last spring we went to Rockford overnight, to see an Agatha Christie play one of the girl's Mom's was in. At the hotel they carried my bag, poured my coffee, and blowdried my hair, I never asked or said a word. That's true friendship, I can't let it slip away cause I know it's priceless!

Beth

[Guest guest]

Now that is a blessing to live so close together. I do agree with you though that my friends just do not expect me to be able to go, or want to go and for awhile I was so skinny and pale looking that it was not possible for them to be with me and not have it slapped in their faces that I was sick and do think it scared the heck out of them also. People don't like to be reminded what sick looks like especially when the sick does not go away. I understand just miss my other life. Have to adjust to this one and learn to be happy in it. Otherwise will waste this part of my life and heck that hurts me and those that are willing to stay close. Gee your good for me.......now let me be good for you, okay?!!!

s Momma

JoAnn

Re: JUst wondering if your friends left you after rsd?

Feel rather like some sort of stranger around friends that have known for years. Just so sad to have that happens. Joanna, I know just what you are talking about. It's like, you want to fit in to this group and you can't. But you did at one time. I seemed to have lost most of my friends, I don't get out or to far away from home, unless hubby takes me. And they don't seem to want to make the time to stop by and see if you want to go shopping or go for lunch or what ever anymore. Maybe we depress them I don't know. I know sometimes I depress the hell out of myself, just being here by myself. If I try to drive to far, my hands and feet go numb from the vibrations, and then I get tired and start to get dosy while driving. Most of these friends are really long timers, like 25 to 30 years. I got one that we stay in touch, but guess what! she has fibro and we depend on each other...along with her step sister. Trish's elder mom tries to mother the 3 of us good thing we all live with 3 blocks of each other. lol.huggs,

[Guest guest]

i keep hearing. i cannot pick up your whell chair. it is to heavy. then

why cn't they just come and sit and talk for a few minutes. i have cried

many days over this. there are times when i feel so alone. but then i

come on net and there are my true friends. they love me for who i am.

thanks for caring and being there. cathy

[Guest guest]

Thats cause i am in it damn email wont cooraperate.. you Love me and I swear I have wrotten this email 20 times

cass

Tonia wrote:

I'm in quite a few other groups, but, to be honest, This is one of my favorite groups and one of the best groups by far!

Tonia

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