Hello All

[Guest guest]

Welcome Sharon,

We are glad to have you here. I am sure you will love this group.

swinsatt@... wrote:

>

> I just joined and I am so glad to see a group like this on egroups. I

> used to visit some of the fibro newsgroups but I can no longer access

> them. I missed visiting with other fibro sufferers...but I belong to

> several lists here and I went looking the other day and found this

> place...

>

> My name is Sharon. I'm 42. I have had fibro since about 1994 and was

> diagnosed in 1998. I have a good doctor...thank goodness. My husband

> is an elementary music teacher..I have three kids...a 17 year old

> son...a 14 year old daughter...and a nine year old son. We have a

> five month old kitten named Binky. I have a part time job at the

> school where my husband works...cafeteria monitor...which means I

> keep the lines moving and the little kids from having food fights. I

> like it because I don't stay for a long time in one position which is

> what makes me hurt the most...I can move around. I met a lady there

> who is an instructional aide who also has fibro...she is much worse

> off than I...

>

> I take flexaril to sleep...and relefen for pain...but sometimes

> tylenol arthritis does the trick for the pain...

>

> My parents live with us...we live in the house I grew up in...and its

> a bit ironic that I moved in to look after them (my dad is 84...my

> mom is only 74 but is in really bad health) that I first took

> ill..but everyone in the family is supportive and we all help out.

>

> I'm also a Cherokee Indian...born on the NC reservation and member of

> the tribe...but we moved away from the reservation when I was two...

>

> That's about all I can think of to about me...I hope to learn more

> here and give support when it is needed...

>

> Sharon

>

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[Guest guest]

In a message dated 09/20/2000 7:13:40 PM Eastern Daylight Time,

swinsatt@... writes:

<< My name is Sharon. I'm 42. I have had fibro since about 1994 and was

diagnosed in 1998. I have a good doctor...thank goodness. My husband

is an elementary music teacher..I have three kids...a 17 year old

son...a 14 year old daughter...and a nine year old son. We have a

five month old kitten named Binky. >>

Hi Sharon,

Seems like all or most of the people I've heard of came down with this

illness in the late 80's or early 90's. Maybe it's just my imagination. Sorry

you have it! Is the rest of your family healthy? Our daughter, age 19, is

the one with this dd in our family, although I had a bit of a " weird spell "

late 80's where I had a lot of fatigue, memory problems, mild Raynauds. I got

pregnant in 90 and the problems went away. Maybe I got lucky, but our

daughter has suffered greatly. I also have a 24 yr. old son and a 9 yr. old

daughter. My son is healthy, but just since spring my 9 yr. old has been

suffering a lot of headaches. I think they may be sinus related, but not sure.

Hey, I had a kitty named Binky too! He was black with a white spot on his

chest and the biggest back feet I've ever seen on a cat! I used to call him

" Binky-bigfoot " ! He died of congestive heart failure. glo

[Guest guest]

Hi...

My family medical history...hmm... my mom has heart disease,diabetes

and osteporosis...and neuropathy in her feet...her health is one of

the reasons we moved in with my parents...my dad is 84...doing well

but couldn't handle the big house they lived in.

I *think* my maternal grandmother and a cousin had fibro. I don't

know for sure but looking back I remember they were always in

pain...always hurting...always going to the doctor and the doctor

finding nothing...and being labelled hypochodriacs....sound familar

My dad on the other hand is very healthy...his brothers and sisters

lived into their nineties...his remaining sister is 101! He is 84,

active and in fair health.

Sharon

> Hi Sharon,

> Seems like all or most of the people I've heard of came down

with this

> illness in the late 80's or early 90's. Maybe it's just my

imagination. Sorry

> you have it! Is the rest of your family healthy? Our daughter, age

19, is

> the one with this dd in our family, although I had a bit of

a " weird spell "

> late 80's where I had a lot of fatigue, memory problems, mild

Raynauds. I got

> pregnant in 90 and the problems went away. Maybe I got lucky, but

our

> daughter has suffered greatly. I also have a 24 yr. old son and a 9

yr. old

> daughter. My son is healthy, but just since spring my 9 yr. old has

been

> suffering a lot of headaches. I think they may be sinus related,

but not sure.

> Hey, I had a kitty named Binky too! He was black with a white

spot on his

> chest and the biggest back feet I've ever seen on a cat! I used to

call him

> " Binky-bigfoot " ! He died of congestive heart failure. glo

[Guest guest]

Hi Pam, just wanted to say a special hello, as I have had fibro

for years also. I lived in Oklahoma for the first 10 years of my

life. We lived in Oklahoma City, I was born in Stillwater. Then

we moved to the Northwest and I've been here ever since. I

can relate to being tired all the time, however I cannot work

any more. Haven't for two years now. It was a devestating

reality for me. Now I do well to get dinner for my wonderful

husband, Doug. Just wanted to say Hello and welcome.

Carolyn, Scappoose, Oregon

Hello All

>Date: Sun, 15 Oct 2000 00:27:17 -0000

>

>How are you all? Hanging in there here:-) Di from Pennsylvania here.

>I am new to this disease but reading like a maniac. Not liking what I

>read though. I am a mother of 2, April and Krystal. Actually, Krystal

>is my natural child and April was my foster child. We are still very

>close and after a visit with me she demanded to know what was going

>on and I told her I just don't feel good. She said< " You are always

>sick or in pain, you need to go to another doctor! " I haven't told

>anyone yet and won't for awhile. Well, actually, I did tell my

>neighbor just in case something happens. She is encouraging me to

>tell my family but I am not ready for that quite yet. I have most of

>the symptoms but since they developed slowly my family has adjusted

>to them as they come and like myself, thought it was my thyroid. I

>have a high level and have for years. I work full time and will have

>to do until I can no longer. Anyone out there still work? Please

>contact me and let me know what adjustments you have had to make so I

>can do it in advance.

>Sunshine.........Di

>

>

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[Guest guest]

that's a really hard question to answer. everyone needs different

adjustments, every symptom needs a different adjustment, sometimes

making an adjustment for one symptoms makes another symptom worse. It

also depends on what you do, how cooperative your supervisor is, what

kind of an ADA program your company has.

One of my coworkers left our team to be on a different cos our super was

not willing to make adjustments. I have a fight on my hands everytime I

asked for the slightest thing and it's always something like- well how

can I explain that to the team without showing favoretism. He just

doesn't budge. Luckily most of my team members like me and they make the

adjustments for me.

And of course the biggest factor is that you are a parent. Alot the

things that I do to manage I couldn't do if I was a parent, especially a

single parent. I work early, I start at 7:30 and get off at 4:00. I

choose those hours because it doesn't get that hectic until 9:00 or so,

that gives me some quiet time where I can be fairly productive. Also by

getting home by 4:30 I can get in a nap before I cook dinner. And my

rule of thumb is no more than five ingredients and less than half an

hour to cook. I also spend several hours at the gym sitting in the hot

tubs and steam room. It's all about the little adjustments. Getting a

low maintenance haircut and lowering our standards about things like

degree of " clean " . Stop thinking that you have to walk 30 minutes to get

a good work out. 3 ten minute walks are good too. Sometime I just go

outside and walk around the building and come back in. That's enough to

take a deep breath and stretch a liitle.

But I think the most important thing is that you make any requests for

anything in writing and keep a copy. You'll never know when you have a

fight on your hands.

** , Stinky's caretaker**

At first dreams seem impossible, then improbable,

then invetible. CR

[Guest guest]

Hi Di

I have had fibro for years I didn't have a name for it. About a year ago it

peaked and I started having trouble sleeping. That is the worse for me. I

also have CFS and TMJ. I still work. But because I am self employed and

only work part time I am not having much trouble. But I am always happy

when the end of the week comes. I am so tired of being tired all the time.

MY husband is tired of hearing about it. Welcome to the group Di. Pam from

Oklahoma

>

>Reply-To: egroups

>To: egroups

>Subject: Hello All

>Date: Sun, 15 Oct 2000 00:27:17 -0000

>

>How are you all? Hanging in there here:-) Di from Pennsylvania here.

>I am new to this disease but reading like a maniac. Not liking what I

>read though. I am a mother of 2, April and Krystal. Actually, Krystal

>is my natural child and April was my foster child. We are still very

>close and after a visit with me she demanded to know what was going

>on and I told her I just don't feel good. She said< " You are always

>sick or in pain, you need to go to another doctor! " I haven't told

>anyone yet and won't for awhile. Well, actually, I did tell my

>neighbor just in case something happens. She is encouraging me to

>tell my family but I am not ready for that quite yet. I have most of

>the symptoms but since they developed slowly my family has adjusted

>to them as they come and like myself, thought it was my thyroid. I

>have a high level and have for years. I work full time and will have

>to do until I can no longer. Anyone out there still work? Please

>contact me and let me know what adjustments you have had to make so I

>can do it in advance.

>Sunshine.........Di

>

>

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[Guest guest]

Thanks for the welcome Pam. I haven't told my hubby yet. He must suspect

something tho. He saw me fall in the chair and I know that alarmed him. I

will hold off as long as possible. How did your hubby react?

Sunshine....di

[Guest guest]

I have a 14 year old daughter, Krystal Lei. She is more understanding than

Doug and I am not sure he even believes me!

Sunshine...di

[Guest guest]

I have been sick for years just didn't have a name for until about 9 months

ago. He is tired of hearing me say I am tired and that I hurt. My moods

are not the best. I am not sure he really understands. Right now he is

addicted to the computer. Nothing I can do about it I try to just leave him

alone with it. My great love is trying new recipes I love homemade soups.

Got a new one on the stove as I type. I have 2 kids my oldest is 17 and in

his last year of high school. My daughter is 13 and very moody I use to call

it prepms now she has full blown psm. LOL Pam from OK

>From: ddasherbond@...

>Reply-To: egroups

>To: egroups

>Subject: Re: Hello All

>Date: Sun, 15 Oct 2000 18:44:51 EDT

>

>Thanks for the welcome Pam. I haven't told my hubby yet. He must suspect

>something tho. He saw me fall in the chair and I know that alarmed him. I

>will hold off as long as possible. How did your hubby react?

>Sunshine....di

_________________________________________________________________________

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[Guest guest]

i basically dx'd myself. I've had the same doc for years and she treated

the pain well. In fact, now that I know what a tender point test is, I

know she was doing them all along. She just never came out and said that

i had fibro. One of my clients had it and she was giving me information

and I saw myself in it. So one day I went to my doc and said that I

wanted to go to PT for my fibro. She said ok and wrote out a referal for

PT and on the referal she wrote " for fibromyalgia " . That is as official

as it got. Luckily all of the docs there and the physician assistant all

agree with the dx. In fact one use magnets herself for the pain.

Of course now the next project is going to be to see if I have that

Arnold Chiari Malformation. I think so and I haven't been wrong on a dx

yet.

** , Stinky's caretaker**

At first dreams seem impossible, then improbable,

then invetible. CR

[Guest guest]

Hi Jan,

Congrats on your little grandpups! That must be nice to see such a great

advent.

Much Comfort and Peace

Janice

[Guest guest]

Hi all,

I'm feeling so worn down and cranky its rainy out and my moods seem

to change so quickly. I try to keep busy crocheting but now I'm

getting bored of that. I feel hungry all the time (not actual hunger

bordem hunger and I've been eating entirely to many sweets I don't

know if I'm tollerating them more now because I'm pregnant or because

I'm ten months out from surgery. It does scare me though. So far I've

still been losing weight about 4 lbs a month but I'm pretty sure I'm

pushing it with all this sugar intake. Well anyway hope everybody

else is weel I just needed to vent a little.

Brown

edd 8/31/02

Open RNY 5/22 @ 294

Now 160

[Guest guest]

,

I know what you mean. I have crocheted two baby blankets in the last

couple of weeks and I'm now working on number three. I do it so I

won't snack. I don't know if it's spring fever or what but I have

been feeling really antsy today. I took my two younger kids for two

different walks today, lol. They didn't mind, of course. :-) My house

is also ridiculously spotless and there is not one piece of dirty

laundry to be found or a single dirty dish. My husband said it seems

like I'm " nesting " but I still have two more months to go. Just

wanted you to know I can sympathize.

Lynette in Arizona

open RNY 6-21-01

still holding at 172

pregnant w/ #4

edd end of May

PS The great news is my 28 month old son is now potty trained. YAY!

[Guest guest]

Thanks for the support I only wish I could go for walks and do some

spring cleaning I'm still on a modified bed rest so my butt is glued

to the couch. I do confess that sometimes I just can't take it and

I'll vacume to make me feel better. I guess I'll just keep crocheting

and the upside is that I have three friends that are pregnant also so

when I have too many blankets I'll have shower gifts.

Brown

edd 8/31/02

Open RNY 5/02 @ 294lbs

now 160

> ,

> I know what you mean. I have crocheted two baby blankets in the

last

> couple of weeks and I'm now working on number three. I do it so I

> won't snack. I don't know if it's spring fever or what but I have

> been feeling really antsy today. I took my two younger kids for two

> different walks today, lol. They didn't mind, of course. :-) My

house

> is also ridiculously spotless and there is not one piece of dirty

> laundry to be found or a single dirty dish. My husband said it

seems

> like I'm " nesting " but I still have two more months to go. Just

> wanted you to know I can sympathize.

> Lynette in Arizona

> open RNY 6-21-01

> still holding at 172

> pregnant w/ #4

> edd end of May

>

> PS The great news is my 28 month old son is now potty trained. YAY!

[Guest guest]

,

I didn't realize you were restricted. You poor thing. I'll bet you

are going crazy. I hope August gets here quickly for you. Will you be

restricted through the entire pregnancy? If you get bored with

crochet, maybe you could try embroidery or knitting? Also, I bead

jewelry with my 11 year old daughter and that is really fun too.

Maybe you could try that for some variety? Do you have 's

craft stores where you live? They are a really good resource for

crafts and activities. Also, do you sew or quilt? There are a lot of

really cute patterns for baby's and children's clothes these days.

Take good care.

Best wishes,

Lynette in Arizona

> Thanks for the support I only wish I could go for walks and do some

> spring cleaning I'm still on a modified bed rest so my butt is

glued

> to the couch. I do confess that sometimes I just can't take it and

> I'll vacume to make me feel better. I guess I'll just keep

crocheting

> and the upside is that I have three friends that are pregnant also

so

> when I have too many blankets I'll have shower gifts.

>

> Brown

> edd 8/31/02

> Open RNY 5/02 @ 294lbs

> now 160

[Guest guest]

Thank you for the Ideas. We do have a s I'm in there at least

once a week for yarn but I've never ventured into any other crafts. I

guess I should put some variety into my days the only othre thing

I've done is cross stich and I did see some needlepoint baby stuff I

thought was cute so it can't be that much more difficult maybe I'll

start with that.

> > Thanks for the support I only wish I could go for walks and do

some

> > spring cleaning I'm still on a modified bed rest so my butt is

> glued

> > to the couch. I do confess that sometimes I just can't take it

and

> > I'll vacume to make me feel better. I guess I'll just keep

> crocheting

> > and the upside is that I have three friends that are pregnant

also

> so

> > when I have too many blankets I'll have shower gifts.

> >

> > Brown

> > edd 8/31/02

> > Open RNY 5/02 @ 294lbs

> > now 160

[Guest guest]

Hi Melveta,

It certainly sounds like you are doing things right. I'll keep

you in my thoughts and prayers - for everything to be O.K. for you to get

a surgery date real soon.

Keep up the good work.

All the best,

Kay

open RNY 12/1/03

Mel wrote:

Hi Group,

I don't have an opportunity to post much. I want to say thank you

to

all who do post. Everything you have to say is most appreciated

A little about me:

I had my orientation at SSFK on 12/6/03 weight 333 lb..

I had an

appointment with Dr. Stiles on 12/13/03. She told me my anemia

problem was a concern and the possible reflux could be a problem.

If

I can clear up both problems with more test and iron, iron, iron

then

she would give me a surgery date.

I'm down to 306 lb. and still loosing. I have an appointment

on 2/9

to test for possible reflux and other problems and then I'm on

my way

to other side.

Please send good thoughts my way that it will go quick for me.

Please keep sharing your great stories.

Melveta

PS working out 3 days a week and feeling great.

Love ya Shell.

[Guest guest]

Good luck to you Melveta and WTG on your weight loss thus far! I

don't post much either. I mainly use this as a means of

collecting

information and in getting an idea of what to expect pre and post

surgery.

I began my journey on 12-12-03 with an initial appointment with my

PCP Dr. Stiles. She was cooperative and gave me a short run down on

the process and all that I have to go through. Three days later I

received a call from her office to set up my appointment with the

Dietitian/Nutritionist for 1-12-04. That appointment was interesting

and informative, it was a group meeting and I had the opportunity to

chat with other patients about their journey. Three days later, Dr.

Stiles office called to state that she had received the paperwork

from the Dietitian/Nutritionist evaluation and was now calling to set

me up for my psychologist evaluation. I wasn't able to commit to

the appointment date yet because I was laid off from my job last week

and wasn't sure how much my Cobra insurance would cost and if

there

would be a lapse. Looks like I can afford the insurance, but I only

have Cobra insurance for 6 months, so I hope I can pull this all

together before I run out of coverage. When I called to let Dr.

Stiles know I was ready for the psyc. evaluation she said they would

be calling me next week and I should be set up sometime in late Jan

or early Feb.

I have to admit, this is all going a lot faster than I had thought, I

am pleased with how smooth the process is going (with the exception

of my stupid job) and hope that I can have my surgery by this summer.

Dr. Stiles seemed to think it was a reasonable assumption.

Good luck to you all *smiles*

Suze

[Guest guest]

,

You should be able to have Cobra ins for 18 months. I believe this is a state law that your employer has to offer it for this period of time.

Carol wrote:

Good luck to you Melveta and WTG on your weight loss thus far! I don't post much either. I mainly use this as a means ofcollecting information and in getting an idea of what to expect pre and post surgery. I began my journey on 12-12-03 with an initial appointment with my PCP Dr. Stiles. She was cooperative and gave me a short run down on the process and all that I have to go through. Three days later I received a call from her office to set up my appointment with the Dietitian/Nutritionist for 1-12-04. That appointment was interesting and informative, it was a group meeting and I had the opportunity to chat with other patients about their journey. Three days later, Dr. Stiles office called to state that she had received the paperwork from the Dietitian/Nutritionist evaluation and was now calling to set me up for my

psychologist evaluation. I wasn't able to commit tothe appointment date yet because I was laid off from my job last week and wasn't sure how much my Cobra insurance would cost and iftherewould be a lapse. Looks like I can afford the insurance, but I only have Cobra insurance for 6 months, so I hope I can pull this all together before I run out of coverage. When I called to let Dr. Stiles know I was ready for the psyc. evaluation she said they would be calling me next week and I should be set up sometime in late Jan or early Feb. I have to admit, this is all going a lot faster than I had thought, I am pleased with how smooth the process is going (with the exception of my stupid job) and hope that I can have my surgery by this summer. Dr. Stiles seemed to think it was a reasonable assumption.Good luck to you all *smiles*Suze

[Guest guest]

,

Cobra is for 18 months BUT Kaiser has a program called conversion and that allows you to sign up for Kaiser without a physical and you can keep it forever.... Just a thought...

Angie

,

You should be able to have Cobra ins for 18 months. I believe this is a state law that your employer has to offer it for this period of time.

Carol

[Guest guest]

Suze,

The conversion coverage isn't great but for me it was A LOT cheaper per a month than COBRA so when I weighed it all out it was a better deal....

Angie

Dr.

pre-op

teachercrowley @ aol.com

[Guest guest]

Whoa, that would be even better. Thanks Angie I will

look into that as well! You guys are great!!

Suze

--- teachercrowley@... wrote:

> ,

> Cobra is for 18 months BUT Kaiser has a program

> called conversion and that

> allows you to sign up for Kaiser without a physical

> and you can keep it

> forever.... Just a thought...

>

> Angie

> In a message dated 1/17/2004 6:26:18 PM Pacific

> Standard Time,

> cscolwell@... writes:

>

> > ,

> > You should be able to have Cobra ins for 18

> months. I believe this is a

> > state law that your employer has to offer it for

> this period of time.

> > Carol

> >

>

>

[Guest guest]

<DIV>Dear Melvita</DIV>

<DIV>Welcome home, I was so sad to hear your

dissapointment regarding your surgery, but you are

alive and healthier and we cant complain about that,

how special that you want to start a group for people

that can not & nbsp; have the surgery, what a

sweeheart.................. I was routing for you, and

i was praying for you and will continue to do

so. & nbsp; I am glad that you are back home</DIV>

<DIV>Colleen<BR><BR><B><I>Mel

& lt;blkbtyca@... & gt;</I></B> wrote:</DIV>

<BLOCKQUOTE class=replbq style= " PADDING-LEFT: 5px;

MARGIN-LEFT: 5px; BORDER-LEFT: #1010ff 2px

solid " ><TT>Hello Everyone, <BR><BR>I'm back

<BR><BR>I want to thank all who posted, called, and

visited me in the <BR>hospital. I cannot tell you all

how much I appreciate all the <BR>support. <BR><BR>My

Story:<BR><BR>The journey has been long and I have

learned so much. <BR><BR>I was scheduled to have WLS

on 4/15/04 at KSSF. <BR><BR>Due to prior surgeries and

scar tissue formation they were unable to <BR>give me

the RNY.<BR><BR>I was very sad and disappointed at

first. It was very hard for me to <BR>talk to people

that were able to have the surgery. That lasted me all

<BR>of 2 days <BR><BR>I am now Back in the Saddle

again. <BR><BR>I am still loosing weight and will

continue. <BR><BR>I will starting a support group for

people that were unable to have <BR>the procedure so

that they too can have a venue of support. <BR><BR>I

am lucky to have so many wonderful people to help me

on my journey. <BR><BR>To my Angle Sue. THANK YOU.

<BR><BR>I hope you all will continue to support me and

others that join the <BR>group and are unable for some

reason to complete the process. <BR><BR>Love,

<BR><BR><BR></TT><BR><!-- |**|begin egp html

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