Dawn

[Guest guest]

Well, if they haven't asked you those questions - YOU NEED TO TELL THEM THE ANSWERS (provide the questions, too!) Dawn, I am crushed and angry for you. However...2 things...DO NOT STOP YOUR MEDS. Is this what you would do to your children? Of course not. I understand how upset you are, but hurting yourself is not a very wise part of the scenario.

#2...start preparing your appeal. And I would handcarry it to the office...yes, I know how hard it would be...but I'd make an appointment to see that woman...I'd want to know her credentials and what, in the package she reviewed, she based her denial on.

Did only one person make this decision? Find out, if you can. This should have been done by an appeals board, I think.

What the heck did your doctor write? Did you call his office and get a copy of the letter?

I would call a local newspaper/TV station...and see if they'd like to accompany you to take your appeal.

Now, in the appeal, you have to have every illness associated with your...PM...gosh, I think it's PM...but other things that you have related to or along with the PM. THose DVTs ought to be seriously addressed in your appeal...were they in the current one? Oh no, sweetie, you ain't done yet...now buck up, find those bootstraps...sure, you need to be at the pity party for a while, but just don't stay too long! I'm going to do a little research....but if you want to take matters into your own hands and start your own research, type www.google.com into your browser...type in Polymyositis and, oh my, what a lot of info to be had. Forgive me for speaking plainly here, but this isn't the time to get stupid...do you think they'll give a rat's behind if you land in the hospital or worse? Right now, all you are to them is a file. They need to see you as a person. Love and hugs,

Lynn

ps. I'm wondering if she hung her hat (and decision) on that word "regeneration."

Annette Flamand wrote:

Dawn... Have you told them how far you can walk, etc? I remember one of my doctors asked me many questions about how far I could walk without stopping, how many tries it takes to get out of an easy chair without help, and can you do your own grocery shopping all the time, and how heavy an item can you pick up and carry (in pounds). Have any of them asked those questions of you? Annette

-----Original Message-----From: Dawn Sent: Monday, September 09, 2002 2:51 PMTo: OurMyositis Subject: Muscle biopsyOkay, so this is what my muscle biopsy says and Vicki said it shouldhave won me my Disability. Let's have your input:Skelettal muscle exhibit extensive myofiber degeneration, necrosis andregeneration. This along with presence of atrophy involving bothmyofiber type gives variability of myofiber size. There is mild tomoderate inflammation. Predominantly there is endomysial infiltrationand very focal perivascular mononuclear lymphocytic infiltrate.What do you all think?This is the situation. The woman said she would review my caseIMMEDIATELY if I can get my Dr. to write a letter stating that I cannotwork and give evidence supporting this. I would think the muscle biopsywould do this.Okay, I just got a call from Disability again while I was typing thisemail and the muscle biopsy is not enough evidence, I guess. What elsecan I provide??? She's ADAMANT (sp?) that my condition has improved andwill continue to improve and won't be something that will stand in myway of working. I said to her, "what is it that you want for evidence,because apparently there's nothing there that supports this according toyou", and she said "that's right, the evidence is not there". Help!!!Dawn

[Guest guest]

Hi Dawn, hope you are feeling better today. I was able to stay awake

better today and some yesterday, haha. Didn't go to sleep while the

preacher was talking, but took a nap as soon as we got home.

My primary doctor wrote me a RX today for a pain patch, have you ever

tried one of those? He has been telling me for 2 months to try it so

when I got some meds refilled today he had wrote a RX for it. Guess

he wants me to try it and quit moaning, lol.

Well your right, just get lots of rest, our bodies think they need

it. And yes, we are lucky to have understanding familys. Take care,

zzzz's Lem

> > > Lem

> > >

> > > I have been having problems staying awake

> > > in the afternoons.......generally around 3:30

> > > I can't keep my eyes open. Wish I had as

> > > good a luck at night. Been waking up several

> > > times a night since I can't take my trazadone

> > > while I am doing this study.

> > > Tell Beck that I am free on the 19th and if

> > > something comes up and her sister isn't

> > > available my offer still stands.

> > > You guys take care of yourselves.

> > >

> > >

> > > Teddi

> > > mailto:teddifromok@w...

> >

> >

> >

> >

> >

[Guest guest]

Hi Dawn, hope you are feeling better today. I was able to stay awake

better today and some yesterday, haha. Didn't go to sleep while the

preacher was talking, but took a nap as soon as we got home.

My primary doctor wrote me a RX today for a pain patch, have you ever

tried one of those? He has been telling me for 2 months to try it so

when I got some meds refilled today he had wrote a RX for it. Guess

he wants me to try it and quit moaning, lol.

Well your right, just get lots of rest, our bodies think they need

it. And yes, we are lucky to have understanding familys. Take care,

zzzz's Lem

> > > Lem

> > >

> > > I have been having problems staying awake

> > > in the afternoons.......generally around 3:30

> > > I can't keep my eyes open. Wish I had as

> > > good a luck at night. Been waking up several

> > > times a night since I can't take my trazadone

> > > while I am doing this study.

> > > Tell Beck that I am free on the 19th and if

> > > something comes up and her sister isn't

> > > available my offer still stands.

> > > You guys take care of yourselves.

> > >

> > >

> > > Teddi

> > > mailto:teddifromok@w...

> >

> >

> >

> >

> >

[Guest guest]

Hi Dawn, hope you are feeling better today. I was able to stay awake

better today and some yesterday, haha. Didn't go to sleep while the

preacher was talking, but took a nap as soon as we got home.

My primary doctor wrote me a RX today for a pain patch, have you ever

tried one of those? He has been telling me for 2 months to try it so

when I got some meds refilled today he had wrote a RX for it. Guess

he wants me to try it and quit moaning, lol.

Well your right, just get lots of rest, our bodies think they need

it. And yes, we are lucky to have understanding familys. Take care,

zzzz's Lem

> > > Lem

> > >

> > > I have been having problems staying awake

> > > in the afternoons.......generally around 3:30

> > > I can't keep my eyes open. Wish I had as

> > > good a luck at night. Been waking up several

> > > times a night since I can't take my trazadone

> > > while I am doing this study.

> > > Tell Beck that I am free on the 19th and if

> > > something comes up and her sister isn't

> > > available my offer still stands.

> > > You guys take care of yourselves.

> > >

> > >

> > > Teddi

> > > mailto:teddifromok@w...

> >

> >

> >

> >

> >

[Guest guest]

My kids don't talk to me until I am on the phone. Also, all the rules you ever taught them seem to be forgotten. It is like a time warp!

Zanna

[Guest guest]

I wouldn't go so far as to say 'victim'. LOL.

Zanna

[Guest guest]

Dawn, I am sorry to hear that you didn't get your SSD. I would get on the phone and find a lawyer who deals with SSD. Like I told you before mine only will get money if she wins. They take hers out before I recieve mine. So you really don't miss it. She said that I might have to pay 100 to 200 dollars out of pocket money. But that would be paid to her after the fact. Yes I am still waiting for my court hearing too. Keep your chin up girlfriend. It can't get much worth. We can only look up. Take care Thinking of you.

Sherri

TeddiFromOK@... wrote:

Dawnre: lawyerI don't know if Canada is dfferent or not. Inthe USA the lawyer only charged if he wins.This is in disability cases.Look in the phone book for lawyers who specialize in disability cases..Teddimailto:teddifromok@...

[Guest guest]

You're a sweetie, Zanna. Thanks. I'll call sometime when there's no

kids bugging me to death. I don't know what it is about the telephone.

Once they see you're on it, it's a magnet for bad behaviour or

something. LOL.

Dawn

mrsxanadu@... wrote:

> Dawn,

> You need to quit apologizing for venting (NOT whining) to us. If you

> can't vent to us, who in the world can you vent to??? What is

> happening to you is wrong, wrong, wrong.......and you can't let them

> get away with it. Hold your ground, you big chicken, and call the

> news station and the news paper and everything!! You are like me

> though and you probably don't like to rock the boat so you let people

> walk all over you. Just say, NO MORE. I finally did and I am much

> happier..... : )

>

> Call me anytime girl and I will call you right back so you don't have

> to have the charges.

>

> Zanna

>

[Guest guest]

OMG......would you stop it for heavens sakes??? If that's all it took

to offend me, I'd better grow a thicker skin. LOL.

Dawn

mrsxanadu@... wrote:

> Dawn,

> I am sorry I called you a big chicken. It's been bugging me ever

> since. Please don't take any offense. I thought it might urge you to

> stick your ground!!

>

> Love ya!

>

> Zanna

>

[Guest guest]

Hi, Lynn. OK, as far as my Dr's. letter, if you can call it that, all

it consisted of was about 3 sentences, stating that I'm a patient of his

who has PM but whose pain is from Fibromyalgia and Bursitis!!!! CAn you

believe that???? I NEVER bought into this when he told me this in

person but never disagreed because in my heart, I know it's the PM

that's causing the pain and don't really give a crap if he doesn't

agree. But now he's saying this in my reports!! And according to this

" nurse " from Disability, " Fibromyalgia is very treatable and

manageable " . ARGH!! I kept saying I DO NOT HAVE FIBROMYALGIA!!! But

then, I said, " okay, say I buy into this theory and I do in fact have

Fibro. and Bursitis. That's just 2 MORE THINGS to add to the list of

everything that's wrong with me. " You know what I mean?? They know

about all the clots I've had, but since I'm on Coumadin and these are

being maintained, that's not an issue to them. She even told me that I

DON'T have severe asthma, as she was looking at my PFT results. I said

(or maybe I yelled) " I think you ought to call my family Dr. whose

treated me for 10 years and find out how severe my asthma is!! " She

said a large % of people have asthma and it's a very manageable thing,

and I said, " I know that, I'm not applying based on my asthma!! This

just compounds things a little " . She didn't care about the JO-1 because

I don't have ILD YET.....same with arthritus. I just don't see how I

can beat these people because they have a come-back for everything I

say. One thing that's keeping me optomistic, she said that when I go

into appeal at the court level, it's a 3rd party reviewing both cases

and will make a completely fair decision based on the facts presented.

However, I don't know how we'll survive until I get a court date!!

Dawn

Lynn wrote:

>

>

> Well, if they haven't asked you those questions - YOU NEED TO TELL

> THEM THE ANSWERS (provide the questions, too!)

>

> Dawn, I am crushed and angry for you. However...2 things...DO NOT

> STOP YOUR MEDS. Is this what you would do to your children? Of

> course not. I understand how upset you are, but hurting yourself is

> not a very wise part of the scenario.

>

> #2...start preparing your appeal. And I would handcarry it to the

> office...yes, I know how hard it would be...but I'd make an

> appointment to see that woman...I'd want to know her credentials and

> what, in the package she reviewed, she based her denial on.

>

> Did only one person make this decision? Find out, if you can. This

> should have been done by an appeals board, I think.

>

> What the heck did your doctor write? Did you call his office and get

> a copy of the letter?

>

> I would call a local newspaper/TV station...and see if they'd like to

> accompany you to take your appeal.

>

> Now, in the appeal, you have to have every illness associated with

> your...PM...gosh, I think it's PM...but other things that you have

> related to or along with the PM. THose DVTs ought to be seriously

> addressed in your appeal...were they in the current one?

>

> Oh no, sweetie, you ain't done yet...now buck up, find those

> bootstraps...sure, you need to be at the pity party for a while, but

> just don't stay too long! I'm going to do a little research....but if

> you want to take matters into your own hands and start your own

> research, type www.google.com into your browser...type in Polymyositis

> and, oh my, what a lot of info to be had.

>

> Forgive me for speaking plainly here, but this isn't the time to get

> stupid...do you think they'll give a rat's behind if you land in the

> hospital or worse? Right now, all you are to them is a file. They

> need to see you as a person.

>

> Love and hugs,

>

> Lynn

>

> ps. I'm wondering if she hung her hat (and decision) on that word

> " regeneration. "

>

> Annette Flamand wrote:

>

> Dawn... Have you told them how far you can walk, etc? I

> remember one of my doctors asked me many questions about how

> far I could walk without stopping, how many tries it takes

> to get out of an easy chair without help, and can you do

> your own grocery shopping all the time, and how heavy an

> item can you pick up and carry (in pounds). Have any of

> them asked those questions of you? Annette

>

> Muscle biopsy

>

> Okay, so this is what my muscle biopsy says and

> Vicki said it should

> have won me my Disability. Let's have your input:

>

> Skelettal muscle exhibit extensive myofiber

> degeneration, necrosis and

> regeneration. This along with presence of atrophy

> involving both

> myofiber type gives variability of myofiber size.

> There is mild to

> moderate inflammation. Predominantly there is

> endomysial infiltration

> and very focal perivascular mononuclear

> lymphocytic infiltrate.

>

> What do you all think?

>

> This is the situation. The woman said she would

> review my case

> IMMEDIATELY if I can get my Dr. to write a letter

> stating that I cannot

> work and give evidence supporting this. I would

> think the muscle biopsy

> would do this.

>

> Okay, I just got a call from Disability again

> while I was typing this

> email and the muscle biopsy is not enough

> evidence, I guess. What else

> can I provide??? She's ADAMANT (sp?) that my

> condition has improved and

> will continue to improve and won't be something

> that will stand in my

> way of working. I said to her, " what is it that

> you want for evidence,

> because apparently there's nothing there that

> supports this according to

> you " , and she said " that's right, the evidence is

> not there " . Help!!!

>

> Dawn

>

>

>

>

[Guest guest]

I know!!! I swear, people probably think I've raised a couple

wildabeasts or something, the way they act. LOL. I DO wanna talk to

you though. I really enjoyed hearing Vicki's voice last night. She was

only the 2nd person I've ever spoke to who I met on the Net. You'll be

my 3rd " victim " . LOL.

Dawn

mrsxanadu@... wrote:

> My kids don't talk to me until I am on the phone. Also, all the

> rules you ever taught them seem to be forgotten. It is like a time

> warp!

>

> Zanna

>

[Guest guest]

*evil laugh*

Little do you know......

Dawn :oP

mrsxanadu@... wrote:

> I wouldn't go so far as to say 'victim'. LOL.

>

> Zanna

>

[Guest guest]

If I fly to LV, I would definately fly out of Bangor, ME. Whenever we

flew to and from FL when I lived there, that is always the airport that

we used. I've never flown out west, so I have NO IDEA how long a flight

it would be. I wonder if I called a travel agency, if they could notify

me whenever seat sales became available. I think they'll do that up

here. Around what time of the year are we considering this big reunion

(well, just a UNION for most of us, as we've never met....other than a

handful of you)? Hubby best get a job making more than $9./hour or

we're in trouble. LOL. Actually, once my Disability ever comes in,

I'll set aside a big chunk out of that back-pay to pay for our trip. I

think I'll leave the kiddies at home, if I'm able to secure a sitter. I

don't want to traumatize them by bringing them to " sin-city " . LOL. Or,

is it kid friendly??

Dawn

mrsxanadu@... wrote:

> Dawn,

> We will get you here somehow if we have too!! LOL....Is it cheaper for

> you to fly out of Maine to fly somewhere in the US or is it the same

> as flying out of Canada? Just curious.

>

> Zanna

>

[Guest guest]

If I fly to LV, I would definately fly out of Bangor, ME. Whenever we

flew to and from FL when I lived there, that is always the airport that

we used. I've never flown out west, so I have NO IDEA how long a flight

it would be. I wonder if I called a travel agency, if they could notify

me whenever seat sales became available. I think they'll do that up

here. Around what time of the year are we considering this big reunion

(well, just a UNION for most of us, as we've never met....other than a

handful of you)? Hubby best get a job making more than $9./hour or

we're in trouble. LOL. Actually, once my Disability ever comes in,

I'll set aside a big chunk out of that back-pay to pay for our trip. I

think I'll leave the kiddies at home, if I'm able to secure a sitter. I

don't want to traumatize them by bringing them to " sin-city " . LOL. Or,

is it kid friendly??

Dawn

mrsxanadu@... wrote:

> Dawn,

> We will get you here somehow if we have too!! LOL....Is it cheaper for

> you to fly out of Maine to fly somewhere in the US or is it the same

> as flying out of Canada? Just curious.

>

> Zanna

>

[Guest guest]

If I fly to LV, I would definately fly out of Bangor, ME. Whenever we

flew to and from FL when I lived there, that is always the airport that

we used. I've never flown out west, so I have NO IDEA how long a flight

it would be. I wonder if I called a travel agency, if they could notify

me whenever seat sales became available. I think they'll do that up

here. Around what time of the year are we considering this big reunion

(well, just a UNION for most of us, as we've never met....other than a

handful of you)? Hubby best get a job making more than $9./hour or

we're in trouble. LOL. Actually, once my Disability ever comes in,

I'll set aside a big chunk out of that back-pay to pay for our trip. I

think I'll leave the kiddies at home, if I'm able to secure a sitter. I

don't want to traumatize them by bringing them to " sin-city " . LOL. Or,

is it kid friendly??

Dawn

mrsxanadu@... wrote:

> Dawn,

> We will get you here somehow if we have too!! LOL....Is it cheaper for

> you to fly out of Maine to fly somewhere in the US or is it the same

> as flying out of Canada? Just curious.

>

> Zanna

>

[Guest guest]

Hi Dawn- thanks for the prayers and they are still needed:) We have no moving

date. Still could end up we won't get the other house, depending on how

patient the owner is. Have had people looking here yesterday and later today,

maybe tomorrow. Haven't had a good couple of days, plus have just come down

with a cold I guess and feel super crappy. By last night, I was at end of my

rope.

Re: your well to do relative- you never know for sure, but maybe they

aren't as well off as you might think. Often it seems people have a lot of

stuff, nice things, cars, etc, but they also might be in huge debt. I'm sure

she didn't answer you not because she doesn't care. But, people are funny,

aren't they? Can't figure them out half the time, and now most of the time I

don't want to!

[Guest guest]

has a point. We knew these people that had 'it all'. The big house, brand new cars, all the upgrades, etc.....then the wife confessed to me that every credit card that they had was maxed to the tune of $50,000 plus. And, the cars were leases. They didn't own anything outright. Some people just want to look good. That marriage only lasted 2 years.....

Zanna

[Guest guest]

has a point. We knew these people that had 'it all'. The big house, brand new cars, all the upgrades, etc.....then the wife confessed to me that every credit card that they had was maxed to the tune of $50,000 plus. And, the cars were leases. They didn't own anything outright. Some people just want to look good. That marriage only lasted 2 years.....

Zanna

[Guest guest]

has a point. We knew these people that had 'it all'. The big house, brand new cars, all the upgrades, etc.....then the wife confessed to me that every credit card that they had was maxed to the tune of $50,000 plus. And, the cars were leases. They didn't own anything outright. Some people just want to look good. That marriage only lasted 2 years.....

Zanna

[Guest guest]

On the up side, if the plane crashed, you won't have to worry about the bills......Just kidding!! I don't like joking about plane crashes. I hate to fly. I will pray for you on Wednesday. I just know everything will be OK!

Zanna

[Guest guest]

On the up side, if the plane crashed, you won't have to worry about the bills......Just kidding!! I don't like joking about plane crashes. I hate to fly. I will pray for you on Wednesday. I just know everything will be OK!

Zanna

[Guest guest]

On the up side, if the plane crashed, you won't have to worry about the bills......Just kidding!! I don't like joking about plane crashes. I hate to fly. I will pray for you on Wednesday. I just know everything will be OK!

Zanna

[Guest guest]

Hmmmm....I sure hope that you are able to get this house. I'm sure it won't be

too long before your own house sells.....afterall, it's only been a couple weeks

since it's been listed, right? We had our house up for sale for 3 1/2 years

before we filed for bankruptcy, so I certainly understand the anxiety that comes

everytime you have a showing. Hang in there, I feel good things are in store

for

you.

Dawn

gide672@... wrote:

> Hi Dawn- thanks for the prayers and they are still needed:) We have no moving

> date. Still could end up we won't get the other house, depending on how

> patient the owner is. Have had people looking here yesterday and later today,

> maybe tomorrow. Haven't had a good couple of days, plus have just come down

> with a cold I guess and feel super crappy. By last night, I was at end of my

> rope.

> Re: your well to do relative- you never know for sure, but maybe they

> aren't as well off as you might think. Often it seems people have a lot of

> stuff, nice things, cars, etc, but they also might be in huge debt. I'm sure

> she didn't answer you not because she doesn't care. But, people are funny,

> aren't they? Can't figure them out half the time, and now most of the time I

> don't want to!

>

>

>

>

>

[Guest guest]

Hmmmm....I sure hope that you are able to get this house. I'm sure it won't be

too long before your own house sells.....afterall, it's only been a couple weeks

since it's been listed, right? We had our house up for sale for 3 1/2 years

before we filed for bankruptcy, so I certainly understand the anxiety that comes

everytime you have a showing. Hang in there, I feel good things are in store

for

you.

Dawn

gide672@... wrote:

> Hi Dawn- thanks for the prayers and they are still needed:) We have no moving

> date. Still could end up we won't get the other house, depending on how

> patient the owner is. Have had people looking here yesterday and later today,

> maybe tomorrow. Haven't had a good couple of days, plus have just come down

> with a cold I guess and feel super crappy. By last night, I was at end of my

> rope.

> Re: your well to do relative- you never know for sure, but maybe they

> aren't as well off as you might think. Often it seems people have a lot of

> stuff, nice things, cars, etc, but they also might be in huge debt. I'm sure

> she didn't answer you not because she doesn't care. But, people are funny,

> aren't they? Can't figure them out half the time, and now most of the time I

> don't want to!

>

>

>

>

>

[Guest guest]

Hmmmm....I sure hope that you are able to get this house. I'm sure it won't be

too long before your own house sells.....afterall, it's only been a couple weeks

since it's been listed, right? We had our house up for sale for 3 1/2 years

before we filed for bankruptcy, so I certainly understand the anxiety that comes

everytime you have a showing. Hang in there, I feel good things are in store

for

you.

Dawn

gide672@... wrote:

> Hi Dawn- thanks for the prayers and they are still needed:) We have no moving

> date. Still could end up we won't get the other house, depending on how

> patient the owner is. Have had people looking here yesterday and later today,

> maybe tomorrow. Haven't had a good couple of days, plus have just come down

> with a cold I guess and feel super crappy. By last night, I was at end of my

> rope.

> Re: your well to do relative- you never know for sure, but maybe they

> aren't as well off as you might think. Often it seems people have a lot of

> stuff, nice things, cars, etc, but they also might be in huge debt. I'm sure

> she didn't answer you not because she doesn't care. But, people are funny,

> aren't they? Can't figure them out half the time, and now most of the time I

> don't want to!

>

>

>

>

>