Re: Introduction

[Guest guest]

Michele, not all the posts are educational.....

(Read: 's posts)

.... but I'm glad you are taking the time to learn more about MDS...

--- foonmichele wrote:

> Hello and thank you for welcoming to your group!

> I'm Michele! I'm a Master of occupational therapy student at Texas

> Women's University in Houston. I've been in school a year and will

> be

> graduating December of 2006. I'm from North Carolina and hope to

> head

> back that way after school. (No offense to the Texans, but I'm

> Carolina girl, what else can I say!)

> Anyways, I offered to volunteer as a sitter at the conference this

> past weekend and had an amazing time. I was so warmly welcomed and

> all the children and young adults were amazing!

> In school, we focus only on the individual we are treating, so for

> me,

> the conference was a chance to observe the dynamics of the whole

> family of a child with special needs. The love and devotion that I

> saw within families this weekend is something I all children could

> experience. And I'm learning so much just from reading your posts!

> I

> have been completely blind to the issues with school programs and

> sickness and infection. And I'm sure I will learn a lot more from

> all

> of you. I hope to be able to make a career of improving the quality

> of life for children with special needs and their families, so keep

> it

> coming!

> Thanks again

> Michele Foon

>

>

>

, hubby to Jaymie & stepdad to , Jordan & Sydney

With puppies Thai (9.5), Zoe(3.5) , Tessie(2), Leo(1.5) & belle (1) ...in

Chelsea, Michigan.

" We could all learn a lot from a box of crayons: Some are bright, some are dull,

some are sharp, some have funny names and all are different colors -- yet they

all live together in the same box. " (author unknown)

__________________________________

Discover Yahoo!

Use Yahoo! to plan a weekend, have fun online and more. Check it out!

http://discover.yahoo.com/

[Guest guest]

Michele,

I am not sure if you were with the Gunnels Gang, but if you were THANKS!!!!! I

was apprehensive about leaving my kids with strangers, especially my 18mo. We

are overly protective, which causes me to be a bit, ok, a lot freakish in this

area!!! LOL!! I was very comfortable leaving my kids. They came out unscathed

and probably enjoyed themselves more than I thought that they could. I

appreciate your donation of your time and your caring.

Thanks from the crazy mom of the wild Gunnels'

foonmichele wrote:

Hello and thank you for welcoming to your group!

I'm Michele! I'm a Master of occupational therapy student at Texas

Women's University in Houston. I've been in school a year and will be

graduating December of 2006. I'm from North Carolina and hope to head

back that way after school. (No offense to the Texans, but I'm

Carolina girl, what else can I say!)

Anyways, I offered to volunteer as a sitter at the conference this

past weekend and had an amazing time. I was so warmly welcomed and

all the children and young adults were amazing!

In school, we focus only on the individual we are treating, so for me,

the conference was a chance to observe the dynamics of the whole

family of a child with special needs. The love and devotion that I

saw within families this weekend is something I all children could

experience. And I'm learning so much just from reading your posts! I

have been completely blind to the issues with school programs and

sickness and infection. And I'm sure I will learn a lot more from all

of you. I hope to be able to make a career of improving the quality

of life for children with special needs and their families, so keep it

coming!

Thanks again

Michele Foon

Become a member of IMDSA today at http://www.imdsa.com

*************************************************

SAVE THE DATE! JUNE 24-26,2005 HOUSTON,TX. IMDSA CONVENTION

*************************************************

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

*************************************************

[Guest guest]

Hi Ellen I am a Sjogrens patient..

Nice to meet you.

Shecat

Bluesie is my Hero! Women are angels... and when someone breaks our wings... we

continue to fly... on a broomstick, we are flexible.

Introduction

Hello all, I'm Ellen. I have Sjogren's, Graves, Lupus and Dystonia. I was Dx'd

years ago with CFS but who knows with everything else going on. I'm here

especially because this group mentions Sjogren's as a topic, and I'm really

interested in learning much more about it and autoimmunity in general.

Any other Sjogren's patients here? Would love to connect and compare notes...

It's great to be here. Thanks everybody

[Guest guest]

Dear Billijo,

 

A belief in God, active attention to prayer/meditation, my music and listening

to theta wave sounds help me with the emotional and spiritual. 

 

But there is still much you might want to consider with your physical

condition.  Vitamin C, magnesium and LDN(low dose naltrexone) have helped me

deal with CFS/FM/OA.  I have had something since 1981.  I was diagnosed with

FM ten years later.  In early 2000 I was diagnosed with OA.

 

Many doctor's who are not pain specialists will not write scripts for

narcotics.  From my experience and reading/seeing other people's experience

narcotics eventually stop working leaving a person addicted.  Regardless of

whether you stay on narcotics or not it is best to have a specialist watch your

use of them.  Your experience may vary from what I have seen.  But in all

likelihood in most parts of the USA a pain specialist will monitor your use of

any narcotic and this is for your good and for the good of all of us.  And even

with that monitoring you might not be well served.  In my little world a face

to face aquaintance of mine and a FM sufferer overdosed on pains meds and

died.

 

Please be cautious.

 

ann     

Subject: Introduction

To: CFAlliance

Date: Thursday, November 25, 2010, 10:32 AM

 

My name is billijo I am a 62 year old woman (63 DEC 26)! I have lived with cf

and fn for the last 22 year severe enough to recieve SSD. I lived in Rochester

New York, had a great Dr! In June I moved to NW Michigan to live with 2 women

friends. We live in the Manistee National Forest, so my live has changed from

city living! We heat with a woodstove so I am the wood cutter and splitter! We

have a cute cabin and property named Croneville Homestead! My roommates are also

retired and sell collectables on Ebay. I am a woodworker (at one time designing

and building high end furniture) and a fine arts photographer! The grateful part

is I have a 24x14 heated shop in the polebarn and work at least a few hours a

day.

Besides the meds I take, nuerotin, cymbalta, tizanidine and vicodin, I have

learned through many chronic pain groups to set priorities of what I want done

and have learned I can't do all some get done at a later time LOL!I've learned

to break through the pain to function with cf and fm (oh forgot ms in

remission). I want to live with these things not be a victim to them! I think

attitude is essential to quality of life!

The only problem with my move to the NW Michigan woods is the lack of avilable

DR's. The soonest appointment I could get is March 3. Atleast my NY Dr wrote my

meds for 11 months with the exception of the vicodin which is a problem here

Dr's will not take you if you are on pain meds or will not prescribe them. This

scares me!!!! I have a trip back east at Christmas to photograph a wedding so

the nY DR will write another 2 month script. After that I amy be in trouble!

Sincea spiritual belief is a a big part of my recovery I would like to know how

others deal with stress and apply spritual;ity to theie recovery?

grateful to join the group and hope to be a benifit to others!

billijo

[Guest guest]

Welcome Billijo,

If your new doc is hesitant to prescribe vicodin for you, give him the info on

you doc in NY and ask him to call.

Some GPs simply refuse to prescribe any pain meds for chronic pain and while it

makes it difficult for the patients, their reasoning really isn't that off-base.

The medical profession is recognizing that chronic pain is a complicated

condition that varies greatly from person to person, and that as such, it should

be treated like a disease in and of itself, by specialists, just as are other

serious conditions. These docs are willing to prescribe pain meds for

short-term reasons but believe that if you have such pain that you require

long-term meds, then you should be under the care of a pain specialist.

My husband, who has psoriatic arthritis, and I both see a rheumatologist as our

primary care provider and he does prescribe Vicodin for me but has explained

this situation to me. I don't take Vicodin every day, and on some days, I just

take it in the morning to get past the worst of the pain. Since I don't take it

all of the time, he is willing to prescribe it for me, so if you are like me and

only have to take it some of the time, explaining that could make the

difference.

I did go to both of the pain clinics in my area that are attached to hospitals

and tried several treatments but none were helpful, so that also contributed to

the willingness of my doc to prescribe the pain meds. He knows about all of

this, of course, and agrees that the Vic is the right course.

I hope this info will help you in communicating with your new doctor and I hope

he works out well for you. It can be so difficult to find a doctor that you are

comfortable with.

All of the best,

Margie

>

> My name is billijo I am a 62 year old woman (63 DEC 26)! I have lived with cf

and fn for the last 22 year severe enough to recieve SSD. I lived in Rochester

New York, had a great Dr! In June I moved to NW Michigan to live with 2 women

friends. We live in the Manistee National Forest, so my live has changed from

city living! We heat with a woodstove so I am the wood cutter and splitter! We

have a cute cabin and property named Croneville Homestead! My roommates are also

retired and sell collectables on Ebay. I am a woodworker (at one time designing

and building high end furniture) and a fine arts photographer! The grateful part

is I have a 24x14 heated shop in the polebarn and work at least a few hours a

day.

>

> Besides the meds I take, nuerotin, cymbalta, tizanidine and vicodin, I have

learned through many chronic pain groups to set priorities of what I want done

and have learned I can't do all some get done at a later time LOL!I've learned

to break through the pain to function with cf and fm (oh forgot ms in

remission). I want to live with these things not be a victim to them! I think

attitude is essential to quality of life!

>

> The only problem with my move to the NW Michigan woods is the lack of avilable

DR's. The soonest appointment I could get is March 3. Atleast my NY Dr wrote my

meds for 11 months with the exception of the vicodin which is a problem here

Dr's will not take you if you are on pain meds or will not prescribe them. This

scares me!!!! I have a trip back east at Christmas to photograph a wedding so

the nY DR will write another 2 month script. After that I amy be in trouble!

>

> Sincea spiritual belief is a a big part of my recovery I would like to know

how others deal with stress and apply spritual;ity to theie recovery?

>

> grateful to join the group and hope to be a benifit to others!

>

> billijo

>

[Guest guest]

Hi

>> I think I haven't accepted my limitations yet, because I am still partially

in denial about my illnesses.

I have had Fibro, CFS and several orthopedic problems for 19 years and I'm not

sure that we can ever fully " accept " our limitations. The reason is that those

limitations aren't static - they change over time. You go through periods where

things are better and you can do more, then bad times and around and around you

go. My husband used to give me a hard time when I would overdo until I laid

things out to him this way:

1. The line for " over-doing it " depends on a bunch of factors including what I

did yesterday, how well I slept and what sort of period I am in so it is always

a moving target.

2. I never know that I am close to the line, I only know that I'm in trouble

when I have crossed it and can't go back.

3. Sometimes I need to overdo it because doing whatever it is is a huge boost

to me emotionally and sometimes that emotional boost is worth the physical cost.

4. The fact is that I rarely overdo it - maybe once every couple of months, so

that would be 1 in 60 days. That's a pretty good record when you think about

it. It is much easier to notice when I overdo than when I don't overdo!

>> I am also a spiritual person, and I believe that an " attitude of gratitude "

gets me through my darkest days.

I agree 100%. A related thought that helps me a great deal is that I believe we

require a lot of support from those around us and we don't have any right to be

more draining on them than is necessary, so I do my best to be upbeat, be

positive, and keep my sense of humor. It is one of the most important things

that I can do for my loved ones who help me so much every day. I can also

listen to them about their problems and be supportive of them.

I think that being reminded of the thoughts that keep us going is one of the

best things about these support groups. We all need that!

Margie

> >

> > My name is billijo I am a 62 year old woman (63 DEC 26)! I have lived with

cf and fn for the last 22 year severe enough to recieve SSD. I lived in

Rochester New York, had a great Dr! In June I moved to NW Michigan to live with

2 women friends. We live in the Manistee National Forest, so my live has changed

from city living! We heat with a woodstove so I am the wood cutter and splitter!

We have a cute cabin and property named Croneville Homestead! My roommates are

also retired and sell collectables on Ebay. I am a woodworker (at one time

designing and building high end furniture) and a fine arts photographer! The

grateful part is I have a 24x14 heated shop in the polebarn and work at least a

few hours a day.

> >

> > Besides the meds I take, nuerotin, cymbalta, tizanidine and vicodin, I have

learned through many chronic pain groups to set priorities of what I want done

and have learned I can't do all some get done at a later time LOL!I've learned

to break through the pain to function with cf and fm (oh forgot ms in

remission). I want to live with these things not be a victim to them! I think

attitude is essential to quality of life!

> >

> > The only problem with my move to the NW Michigan woods is the lack of

avilable DR's. The soonest appointment I could get is March 3. Atleast my NY Dr

wrote my meds for 11 months with the exception of the vicodin which is a problem

here Dr's will not take you if you are on pain meds or will not prescribe them.

This scares me!!!! I have a trip back east at Christmas to photograph a wedding

so the nY DR will write another 2 month script. After that I amy be in trouble!

> >

> > Sincea spiritual belief is a a big part of my recovery I would like to know

how others deal with stress and apply spritual;ity to theie recovery?

> >

> > grateful to join the group and hope to be a benifit to others!

> >

> > billijo

> >

>

[Guest guest]

A website that might prove useful is Bruce campbells self management course for

FM and CFS patients it certainly helped me.

If you dont know how close you are to the line think of it this way: you have 12

marbles in a day in a bowl you must leave some marbles in the bowl otherwise all

your energy is gone and the marbles = energy so you rate your activity like

getting dressed having a shower watching TV cooking or whatever as a certain

amount of marbles and you cant take out more than 12 BUT if you rest as i do for

10-15 mins 4 - 5 times a day OR sleep during the day that is putting the marbles

BACK into the bowl see what i mean??? So basically eventually you get so good at

it that you dont need to write it down or anything and you dont cross the line

as often. However even though ive been doing this a LOT i still end up in

trouble myself so its not always as easy as it sounds.

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

From: Margaret

Hi

>> I think I haven't accepted my limitations yet, because I am still partially

in denial about my illnesses.

I have had Fibro, CFS and several orthopedic problems for 19 years and I'm not

sure that we can ever fully " accept " our limitations. The reason is that those

limitations aren't static - they change over time. You go through periods where

things are better and you can do more, then bad times and around and around you

go. My husband used to give me a hard time when I would overdo until I laid

things out to him this way:

[Guest guest]

Hi Margie,

Thanks so much, your post was very helpful. Sometimes, just getting out

of bed is " overdoing it " for me, but with fibro, not moving for long

periods of time causes a lot more pain because my muscles tighten up. I

also have to keep going because I have 9 very active lovebirds who need

a lot of love and a lot of cleaning up after. They keep me going.

I agree that the emotional and psychological benefits of doing what I

need and want to do is worth the pain it costs me. The longer I live

with the illness, the less the pain bothers me, so I believe I am

adapting to it. I no longer lie in bed crying or having pity parties

for myself, I just go about my day, doing what needs to be done, and

staying happy and peaceful most of the time.

I have faith that someday there will be a medicine, a method, or even a

cure for all of these illnesses that we have to live with, but I can

live with them patiently until then.

Chris

>

> Hi

>

> >> I think I haven't accepted my limitations yet, because I am still

partially in denial about my illnesses.

>

> I have had Fibro, CFS and several orthopedic problems for 19 years and

I'm not sure that we can ever fully " accept " our limitations. The reason

is that those limitations aren't static - they change over time. You go

through periods where things are better and you can do more, then bad

times and around and around you go. My husband used to give me a hard

time when I would overdo until I laid things out to him this way:

[Guest guest]

Hi all, I have not posted as much over last few months but what I read really

strikes home. My health problems started with a rearended car accident that

messed me up--the lady was on a cell phone when she took me out at 60 MPH. But

anyway, I've been on all those meds, its over 3 years now since the accident.

I learned from this site in fact, stash as much vicodin as you can over time,

the doc's are weird about prescribing it nowadays so you have to really watch.

if you have a doc prescribing it you don't wnat to lose that doctor.

i learned from the internet that the reason it is a hassle is that street

addicts break the vicodin up into a powder and snort it that is why they don't

like to prescribe say 5-500 hydrocodones or 7.5-750's. as we know, we need it

for pain, it has nothing to do with addiction or using it as recreation.

we have to worry about such nonsense when we are dealing with pain allthe time,

they should walk in our shoes. Anyhow, if you have a doc prescribing the

'fast-acting' vicodin it is called keep them at all costs. even if you move,

simply don't tell them and go back to see him even if it is a long trip.

its a shame, but chronic pain is no picnic. if things aren't working out, i

think you can probably get a doc to prescribe the sustained release vike, it is

stronger but it is a higher class drug that you will have to go to a certain

pharmacy to get. this way, it is a capsule so the doc's seem more agreeable to

using it since street addicts can not, sustained release means the hyrdocodone

is released over time rather than more in a clump like the short acting stuff.

i wish everyone the best and you have to take your own journey's to figure

things out. my case is i am still only 51 years old and was alwasy an athlete

before the acc ident so i am holding up physical swise okay so when the pain

clinic wanted to use sustained release vike wow, that stuff gave me extra in the

first few hours adn not enoubgh later and then you have to wiat to take it. i

ditched the pain clinic, they did not want to prescribe the regular vike so i

said goodbye to them. luckily, i have a good doctor i found that sees my

history over the last 3 years and knows this is not a bowlof cherries adn i am

not palying games. so i can get my regular vike. so be careful and think about

thise things.

try to move away from those other meds in the long run i don't think they are

good but you have to make our own decisions. cymbalta made me black out and

collapse, paxil and klonopin garbage almost killed me, the psychotic drugs will

mess you up worse in the long run.

well, i'm long winded, so we all have different things that work so i don't want

to say anyting against anyone where thoose drugs work but for me looking back,

all i ever needed was vicodin and some ibuprofen now and then. other than that

explore all the pain handling techniques, i use heat, inversion, meditation,

focus on sleep, staying calm, religion, and just glad to be alive. vicodin is a

godsend for when you can't take it anymore.

good luck everyone. hang in there and don't give up.

> >

> > My name is billijo I am a 62 year old woman (63 DEC 26)! I have lived with

cf and fn for the last 22 year severe enough to recieve SSD. I lived in

Rochester New York, had a great Dr! In June I moved to NW Michigan to live with

2 women friends. We live in the Manistee National Forest, so my live has changed

from city living! We heat with a woodstove so I am the wood cutter and splitter!

We have a cute cabin and property named Croneville Homestead! My roommates are

also retired and sell collectables on Ebay. I am a woodworker (at one time

designing and building high end furniture) and a fine arts photographer! The

grateful part is I have a 24x14 heated shop in the polebarn and work at least a

few hours a day.

> >

> > Besides the meds I take, nuerotin, cymbalta, tizanidine and vicodin, I have

learned through many chronic pain groups to set priorities of what I want done

and have learned I can't do all some get done at a later time LOL!I've learned

to break through the pain to function with cf and fm (oh forgot ms in

remission). I want to live with these things not be a victim to them! I think

attitude is essential to quality of life!

> >

> > The only problem with my move to the NW Michigan woods is the lack of

avilable DR's. The soonest appointment I could get is March 3. Atleast my NY Dr

wrote my meds for 11 months with the exception of the vicodin which is a problem

here Dr's will not take you if you are on pain meds or will not prescribe them.

This scares me!!!! I have a trip back east at Christmas to photograph a wedding

so the nY DR will write another 2 month script. After that I amy be in trouble!

> >

> > Sincea spiritual belief is a a big part of my recovery I would like to know

how others deal with stress and apply spritual;ity to theie recovery?

> >

> > grateful to join the group and hope to be a benifit to others!

> >

> > billijo

> >

>