New Member

Report post · March 22, 2007

Hi , I've heard that said many times - that it's like chemo. Or

" poisoned " as the new gal (sorry, no brain for names or energy to look for

it) put it. Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of sarah

Sent: Thursday, March 22, 2007 6:55 AM

To: CFAlliance

Subject: Re: new member

I always wonder if we feel similar to chemo patients without the hair loss.

Having never gone through chemo, I don't know.

English

Report post · March 22, 2007

Welcome from a fellow Missourian! I'm a bit late on posting this, so I'm

sure you've already experienced some great advice and support from this group.

I'm in St. Louis, married 21 yrs, with 3 kids too. Diagnosed with CFS in 1999,

and FM in 2007 (who knew? lol)

Take care,

STL Jane

Report post · March 22, 2007

>

>>

>> >Thankyou nne! I also live in MO.

>> >

>>

> welcome rachel

> iknow you will like this group

> god bless

> marianne

> mo

>

Report post · March 22, 2007

Brain fog meets email, oh joy.<grin> Aylwin ps sorry 'bout that!

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Dorie S

Sent: Thursday, March 22, 2007 10:46 AM

To: CFAlliance

Subject: Re: Re: new member

There's a small mistake here. I didn't post that, I was being spoken " to " in

this regard. I don't get this feeling, thankfully; I have enough other

stuff.

Doreen

Report post · March 23, 2007

>Thankyou Jane!

Welcome from a fellow Missourian! I'm a bit late on posting this,

> so I'm sure you've already experienced some great advice and support from

> this group. I'm in St. Louis, married 21 yrs, with 3 kids too. Diagnosed

> with CFS in 1999, and FM in 2007 (who knew? lol)

> Take care,

> STL Jane

>

Report post · March 23, 2007

What a bunch of hogwash. Doctors really need to get on the band wagon

here and educate themselves and quite treating patients like they are

worthless and not worth treating because they don't believe in it or

whatever. I really feel for both of you.

Sandrea

new member

Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might not

post much due to the brain fog. but,I do read the posting.I did want to

let you know that their was someone out there that is learning so much

from your site.

Report post · March 23, 2007

Hi Becky,

It's nice to meet you. Sorry for your all-too-typical medical experience.

This is just exactly what I meant by my recent post on oral surgery. If we don't

all fit neatly packaged into what is convenient and easy for THEM, and is

'supposed to' work for everyone, then we are written off as not worth the bother

to treat, by 'most' of them. Sometimes there is a caring one here and there, but

they are very difficult to find indeed. My former general dentist, who had to

retire early because of getting carpal tunnel in both hands, would always do

what I needed, and do it my way. He and his staff didn't even call it 'special

needs'. It was wonderful. The dentist I see now is the only one in the whole

community who was willing to take on his patients when he retired from

disability.

I've even learned that dentists and their assitants wear gloves to protect

'themselves' from 'us', and not vice versa. A friend told me they picked

something up that had fallen on the floor and continued using it in her mouth.

It is all such a discouragement. We are treated as worthless because of our

unvalidated conditions. It is discrimination and intolerance on their part

anyway; because illness is illness no matter what the cause or reason.

Doreen

new member

Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might not

post much due to the brain fog. but,I do read the posting.I did want to

let you know that their was someone out there that is learning so much

from your site.

Report post · March 23, 2007

Hi Becky!

It's so nice to know your out there ...feel free to write even with

the brain fog as I think we can all relate, can read typoneeze and

sometimes we forget what we read the next day so repeating yourself

is acceptable too!

Where could you go wrong?? Oh...long winded? I dont mean to hurt

yer feelings but that ones been cornered already...just can't

remember who it was!

If a Doctor could turn a patient away saying " you can't afford me " I

don't think I would return even if I had the money to do so. I would

be looking for not just a doc that knows what he's doing but most of

all ...one with compassion and sensitive enough to listen. I have

one! When I had a good day and told him so...my doctor got all misty

eyed even though he had the biggest smile on his face! Now, that's a

Doctor that has alot invested in ME! Not myalgic Enceph...but me, I,

!

Again, welcome to the group as I know there are many more just like

you that do alot of reading but have not posted yet...WE KNOW WHO YOU

ARE!! lol

Well hun, Im exhausted. I have brochitis, sinis probs, temps, sore

throat so I'm goin to rest a bit.

God Bless!

> Hi, my name is becky. I have cfs,fm, ddd, djd, sarcoidosis.i might

not

> post much due to the brain fog. but,I do read the posting.I did

want to

> let you know that their was someone out there that is learning so

much

> from your site.

Report post · March 26, 2007

Welcome ,

I am relatively new also and share your sentiments about this group. It

really is very nice to have someone to talk to who understands and doesn't

start in on what you should do to pull yourself together. I look forward to

hearing more from you.

English

Report post · March 26, 2007

I have a Celebrity scooter which I love. It was quite expensive and I

have a lift that puts it into my van. I live in ME so protecting it

from the weather is an issue. I also can't lift even the lightest

scooters, so couldn't do one of those even though it was cheaper. I

chose the celebrity because it has different hand controls than the

others and is easier on my hands. I got the four wheel one as it is

more stable and my balance is not always the greatest. Also, I really

want to be able to walk my dogs and mine are big dogs and could pull me

over on the three wheeled scooters. I also need to be able to use mine

in snow and mud in parking lots and the four wheel one is better for

traction. However, in hindsight, since mostly I use it indoors in

places, the three wheel one is easier to maneuver and get down aisles

and such. I'll be glad to answer any questions you may have.

Evidently, I am too mobile to qualify for a scooter under Medicare and I

am fighting with my private insurance to get the scooter covered. Their

latest argument is that I should use a manual wheelchair if fatigue and

nausea/dizziness keeps me from standing. So I am now appealing as I am

not able to use my arms and hands due to pain issues. How they think

someone so fatigued could manage a manual wheelchair even without the

hand stuff is kind of crazy.

Sandrea

New member

Let me apologize in advance for the length of this posting.......

I haven't been a member very long and have been reading the posting

to get a feel for the group. Now, after realizing how much we all

seem to have in common and how wonderfully compassionate all of you

seem to be, I feel comfortable enough to post info about myself and

start to join in the group discussions. (and yes, I have aquired

some trust issues over the years dealing with these illnesses, as

most of you can probably relate too.)

Report post · March 26, 2007

,

I am glad you chatted, I am Debbie AKA Deb R as there

are lots of Debs here, I live in Tacoma,Washington. I

was you about a year ago until I finally started to

post and these people are all soo amazing!!! It is

nice to know that others believe in us. Can I ask

about the neck stuff as I have some major problems

with mine and your sugery is an option to me but I am

scared, I am 30 and have had this for quite some time

now but I understand if you do not want to share.

Anyways, welcome welcome, glad you are here,

Deb R

--- wrote:

> Let me apologize in advance for the length of this

> posting.......

>

> I haven't been a member very long and have been

> reading the posting

> to get a feel for the group.

Report post · March 26, 2007

Welcome, Welcome Welcome and thanks for sharing your story too! This group

is a Godsend for me, as well as I guess.........EVERYBODY here. There is a

peace that comes with the knowledge we are NOT alone or CRAZY! I've had those

doctors too. As you've mentioned this is such a compassionate group and they've

never let me down!

Take good care of yourself and see you soon,

STL Jane

Report post · March 26, 2007

Hi , welcome! Yes, isn't it just amazing what we all have in common.it

is truly lovely to come here where we are understood and appreciated just

for being us, not because of the endless Doing. Take Care, Aylwin

Report post · March 26, 2007

Dear ,

I'm glad to meet you and that you have written to the group. It's so great to

have a place to say anything we want and not be laughed or scoffed at. The best

to you always, and I look forward to hearing from you again.

Hugs,

Doreen (60)

Eugene, Oregon

Report post · March 26, 2007

,

I'm new to this group. It's amazing to see that people out there are suffering

from the same symptoms. I don't feel so bad now. I have limited my friends down

to a few, because I'm just sick of hearing the lectures from all those know it

alls. It's nice to come here and read the posts, of all that have common

problems.

Jodie

Report post · March 27, 2007

Welcome to the group. Looking forward to learning more about you. Great

group.

Blair

Report post · March 27, 2007

Hi ,

I enjoyed reading your bio and you may not realise but you give us

strength with your presence too! It is good to compare notes so to

speak, keeps us knowing that we arn't so different from others or

that it could always be worse....

About tremors, I have my fair share too! It started with my hands if

you dont count involentary movements, jerks, twitches. There are

times that it's so bad that I cannot use my mouse as all of the

sudden involentarily my arm will jerk sending my mouse accross the

screen. If I try to reacha forward (wish nothing supporting my arm)

my hand bobs like parkinson's.

LIsa, about your eye movements. I think I would get that checked out

if nobody has information on what that eye movement is. I have

forgotten but it's more serious than changes in site or I thought. It

seems someone else in this group spoke about that kind of movement in

their eyes. Perhaps they will post about it to you.

You never have to apologise for how many words you use in your post.

We are free to say what we want in as many words as we need. :-)

God Bless and Welcome again!

>

Let me apologize in advance for the length of this posting.......

>

> I haven't been a member very long and have been reading the posting

> to get a feel for the group. Now, after realizing how much we all

> seem to have in common and how wonderfully compassionate all of you

> seem to be, I feel comfortable enough to post info about myself and

> start to join in the group discussions. (and yes, I have aquired

> some trust issues over the years dealing with these illnesses, as

> most of you can probably relate too.)

Report post · March 28, 2007

Deb,

I don't mind sharing info about my neck, that's why we're here :-)

I have degenerative disk desease and my first fusion was done when I

was about 37, but I had been having problems for a few years before

that. I was in constant pain in my arms/hands/etc, but almost

immediately after the surgery it was gone. The doc (a neurosurgeon)

did a fusion at C5/C6 (using bone from my hip and no metal plate)

unfortunatly for me, my bones didn't mend well and I started having

problems again. A few years later I had another fusion at C5/C6/C7

(using donated bone and a metal plate). The 2nd surgery was with a

different doc (an orthopedic surgeon who specialized in the spine).

Recovery after the 2nd surgery was much better, because of the plate

that was installed. And, I know it's just psychological but I also feel

more secure about my disks staying put.

It is a tough decision to make regarding surgery. I have two

suggestions 1) Find a GOOD doctor that specializes in spinal surgery

and 2) The longer you wait the more nerve damage there is and nerves

don't repair themselves. I have some residual nerve damage that will

never go away.

Hope this information helps and if you have any more quesitons, just

holler.

>

> ,

> I am glad you chatted, I am Debbie AKA Deb R as there

> are lots of Debs here, I live in Tacoma,Washington. I

> was you about a year ago until I finally started to

> post and these people are all soo amazing!!! It is

> nice to know that others believe in us. Can I ask

> about the neck stuff as I have some major problems

> with mine and your sugery is an option to me but I am

> scared, I am 30 and have had this for quite some time

Report post · March 28, 2007