new member

Report post · July 31, 2002

H Lena...tonight must be an Official Fatigue Night, as it seems several

of us are struggling with that pretty intensely. I'm glad you seem to

be in a good remission, apart from the fatigue.

The people here are lovely & wonderful, and as helpful as they can be.

Welcome to our little corner of the world.

With Hope...

Tess

Report post · July 31, 2002

Hi Lena, and welcome to the group! You'll find a lot of caring friends here,

as well as great information on RA and other autoimmune disorders.

I know a lot of us battle fatigue on a daily basis, and it can be very

frustrating. I had my first good day in a long time, and was amazed at how

much more I can accomplish when the fatigue abates for a day.

Love and hugs,

Carol

[ ] new member

Hi Everyone,

I just joined the group. I was diagnosed with SLE when I was 21. In

its early years it shut my kidneys down twice caused problems with my

lungs once. After several years it quietly went into remission, Where

it has remained ever sense. I'm now 48 and take no meds for it. I was

diagnosed with Raynoids last fall. The worst thing I have is the

continual fatigue.

Lena

Report post · July 31, 2002

Hello Lena..just wanted to say hi to you since you've just joined. I have

Raynaud's also along with RA among other things. I know what you mean about the

fatigue..it is a real problem. I' m trying different vitamin tonics but so far

they all give me stomach problems so I'm still on just a multi-vitamin a day

among my other meds. I'm sure you'll find this list very helpful. Thank goodness

your SLE went into remission..I couldn't be happier for you!

Take care

marrielle

> Date: Wed, 31 Jul 2002 02:34:40 -0000

From: " l_knighten " <l_knighten@...>

Subject: new member

> After several years it quietly went into remission, Where

it has remained ever sense. I'm now 48 and take no meds for it. I was

diagnosed with Raynoids last fall. The worst thing I have is the

continual fatigue.

Lena

Report post · July 31, 2002

Hi Lena:

Welcome to the group. I am 48, have been diagnosed

with RA for three years, and have had Raynaud's even

before that. The fatigue is also one of my worst

complaints - tired of being tired - sometimes it can

just be overwhelming. I don't work outside the home

so when I tell someone I am exhausted, they look at me

like I am crazy - after all, what could I have done to

get so tired??? Sometimes it's tiring just to get out

of bed in the morning lol.

Kathe in CA

__________________________________________________

Report post · July 31, 2002

Hi Marreille,

Thanks for the welcome, I used to belong to a support group in a near

by city. However when mine went into remission and I saw so many

others struggling for just one more day it really put me into a

depressive state and I had to quite going. The fatigue is a real

problem though as some days your just not sure you can make it to the

end of the day.

Huggs

Lena

> Hello Lena..just wanted to say hi to you since you've just joined.

I have Raynaud's also along with RA among other things. I know what

you mean about the fatigue..it is a real problem. I' m trying

different vitamin tonics but so far they all give me stomach problems

so I'm still on just a multi-vitamin a day among my other meds. I'm

sure you'll find this list very helpful. Thank goodness your SLE went

into remission..I couldn't be happier for you!

> Take care

> marrielle

>

> > Date: Wed, 31 Jul 2002 02:34:40 -0000

> From: " l_knighten " <l_knighten@y...>

> Subject: new member

> > After several years it quietly went into remission, Where

> it has remained ever sense. I'm now 48 and take no meds for it. I

was

> diagnosed with Raynoids last fall. The worst thing I have is the

> continual fatigue.

> Lena

>

Report post · July 31, 2002

Hi Kathe,

Thanks for the welcome. Yes the fatigue can be so overpowering!!!

Over the years I have fell into a set pattern, Up about 5 am (no

alarm needed most times) but crash out no later than 9pm!!! My

friends can't understand why I don't stay up and " party " till the wee

morning hours, There is just no way even if I wanted too. Also I work

outdoors The past couple days have been horrific with the high temps.

My skin feels cooked even after applying sunscreen. Guess I will have

to dig out some " light weight " long sleeve tops if I am to survive

this.

Huggs

Lena

> Hi Lena:

>

> Welcome to the group. I am 48, have been diagnosed

> with RA for three years, and have had Raynaud's even

> before that. The fatigue is also one of my worst

> complaints - tired of being tired - sometimes it can

> just be overwhelming. I don't work outside the home

> so when I tell someone I am exhausted, they look at me

> like I am crazy - after all, what could I have done to

> get so tired??? Sometimes it's tiring just to get out

> of bed in the morning lol.

>

> Kathe in CA

>

> __________________________________________________

>

Report post · July 31, 2002

Hi Susie,

Just making it through another day at times is a feat!! I hope your

control lasts a life time.

Lena

> > Hi Everyone,

> > I just joined the group. I was diagnosed with SLE when I was 21.

> In

> > its early years it shut my kidneys down twice caused problems

with

> my

> > lungs once. After several years it quietly went into remission,

> Where

> > it has remained ever sense. I'm now 48 and take no meds for it. I

> was

> > diagnosed with Raynoids last fall. The worst thing I have is the

> > continual fatigue.

> > Lena

Report post · July 31, 2002

Hi Tess,

Thanks for the welcome. This does indeed seem to be a very good group

I can only hope to keep up. I don't know what if anything can be done

for the fatigue, I have never found an answer. More sleep is not the

answer as that just makes me feel like I have been on a drunk!!! I am

just content to plod along one day at a time.

Lena

> H Lena...tonight must be an Official Fatigue Night, as it seems

several

> of us are struggling with that pretty intensely. I'm glad you seem

to

> be in a good remission, apart from the fatigue.

>

> The people here are lovely & wonderful, and as helpful as they can

be.

> Welcome to our little corner of the world.

>

> With Hope...

>

> Tess

Report post · July 31, 2002

Hi Carol,

Wow a good day!!! Its been so long for me I forget whats that is

like! (Serious)

Lena

> Hi Lena, and welcome to the group! You'll find a lot of caring

friends here,

> as well as great information on RA and other autoimmune disorders.

>

> I know a lot of us battle fatigue on a daily basis, and it can be

very

> frustrating. I had my first good day in a long time, and was

amazed at how

> much more I can accomplish when the fatigue abates for a day.

>

> Love and hugs,

> Carol

>

> [ ] new member

>

> Hi Everyone,

> I just joined the group. I was diagnosed with SLE when I was 21. In

> its early years it shut my kidneys down twice caused problems with

my

> lungs once. After several years it quietly went into remission,

Where

> it has remained ever sense. I'm now 48 and take no meds for it. I

was

> diagnosed with Raynoids last fall. The worst thing I have is the

> continual fatigue.

> Lena

>

Report post · August 1, 2002

I understand about leaving the support group you were involved in. In my opinion

you did just the right thing by leaving..I think you deserve to enjoy yourself

as much as you can during your remission. You've also the fatigue to cope with

and the Raynauds as well so it's still a difficult thing to cope even with less

pain in your life. We could all do with a little " honour thyself " sometimes and

your right up there on the list! Yesterday I did some gardening and overdid it

again so today I'm very stiff. I was technically diagnosed in March this year

but my RA has been active for about a year so I'm not quite that good at knowing

when enough is enough in terms of gardening yet. Anyway, have a wonderful day

and I send you wishes for comfort, painless hours and less fatigue...

marrielle

>Message: 9

Date: Wed, 31 Jul 2002 22:30:23 -0000

From: " l_knighten " <l_knighten@...>

Subject: Re: re:new member

> The fatigue is a real

problem though as some days your just not sure you can make it to the

end of the day.

Huggs

Lena

Report post · August 1, 2002

Hi Marrielle,

Although that support group no longer exists I can still remember

some of the stories. Not a pretty picture in my mind!! Although I was

diagnosed 28 years ago I still over do it. The old " just a little bit

more " syndrome. I wore a 3/4 length sleeve top today to help with the

sun exposure but 10 hours in the middle of the road has taken its

toll (Flagging traffic). My therapist has advised me to seek other

employment but I would have to return to school and in my present

state I'm just to exhausted to study. Guess I will just have to stick

it out a little longer.

Huggs

Lena

> I understand about leaving the support group you were involved in.

In my opinion you did just the right thing by leaving..I think you

deserve to enjoy yourself as much as you can during your remission.

You've also the fatigue to cope with and the Raynauds as well so it's

still a difficult thing to cope even with less pain in your life. We

could all do with a little " honour thyself " sometimes and your right

up there on the list! Yesterday I did some gardening and overdid it

again so today I'm very stiff. I was technically diagnosed in March

this year but my RA has been active for about a year so I'm not quite

that good at knowing when enough is enough in terms of gardening yet.

Anyway, have a wonderful day and I send you wishes for comfort,

painless hours and less fatigue...

> marrielle

>

> >Message: 9

> Date: Wed, 31 Jul 2002 22:30:23 -0000

> From: " l_knighten " <l_knighten@y...>

> Subject: Re: re:new member

> > The fatigue is a real

> problem though as some days your just not sure you can make it to

the

> end of the day.

> Huggs

> Lena

>

Report post · August 8, 2002

Hi Tina & welcome to our group!

We're glad to have you with us.

You must be totally frustrated with your insurance, first off they

took forever to give you a denial, second, they denied the DOCband!

What insurance do you have?

We have lot's of members currently appealing their ins. companies and

I know they'll offer you good help and tips.

You can also go to www.plagiocephaly.org/support for additional

insurance issues help.

We also have more help in our " files " section, then " help folder " ,

then " insurance help " .....there's good tips in there that might help.

I had to laugh at your " crockpot place " comment, never heard of

that!

Have they approved a STARband or a locally made helmet? Do you know?

Welcome again to our group - best of luck with your ins. battle &

please keep us updated.

Debbie Abby's mom DOCGrad

MI

> Hello, My name is Tina. I live in Arizona and have 2 beautiful

> children, Jade, 3 years and Chase, 9 months. My son Chase

> was diagnosed with Plagiocephaly. His dr. wants him to see a

> specific place that uses the DOC band, but the insurance denied

> it because they have a contract through another place that uses

> a different type of band. This whole referral process first began

> on June 26th and we just got denied on August 6th!!!! I was

> wondering if any of you have advice on appeals to your insurance

> companies. I'd appreciate any help you could give. I don't want

> my son going to some crockpot place and have them screw up

> his head even worse.

>

> Thanks for your help,

> Tina

Report post · August 8, 2002

Tina,

Hello and welcome to the group. Sorry to hear about the lenghty delay with your

insurance co, unfortunately that is all too common amongst members in this

group! I would suggest that you check out the place that your insurance WILL

cover. Many, many members here did not use the DOCband and got excellent results

- my daughter included!!! We used a locally made helmet and were very please

with the results. Another moderator in this group, Niki, had a STARband for her

twins and got outstanding correction for both of them. Not to say that the

DOCband isn't a great product, it is! However, there are other really good

products out there and really good orthotists too and it might be worth your

time to meet with the people at the place that is covered and interview the

ortho there. You might be surprised at the experience and expertise that is

available there. Of course, you might also decide that they simply do not have

enough experience and then you could try that angle with your insurance company.

It will be hard to get the denial overturned if you have an HMO and they want

you to use the place they are contracted with. But heck, it's worth a try!

Give the other place a call and set up an interview with them. You don't have

anything to lose by simply talking to them and you might have everything to

gain!

Best wishes to you and Chase. You sound like a very proactive mom so I'm sure

that Chase will get the very best care possible!

Marci (mom to )

Oklahoma

Report post · August 8, 2002

Hi Debbie and thanks for the welcome! We have CIGNA

insurance, which the name alone says enough! They

supposedly have their contract with a place called

Hanger. I'm not sure what type of band they use, but

I'm going to find out. I'm just frustrated, cause I

know how critical it is to get treatment started as

soon as possible. How old was your daughter when she

wore her DOC band? Thanks for the tips on where to

look for help. I'm in the process of doing an appeal

letter.

Take care,

Tina

--- debbieandabby <dj2kirby@...> wrote:

> Hi Tina & welcome to our group!

> We're glad to have you with us.

> You must be totally frustrated with your insurance,

> first off they

> took forever to give you a denial, second, they

> denied the DOCband!

> What insurance do you have?

> We have lot's of members currently appealing their

> ins. companies and

> I know they'll offer you good help and tips.

> You can also go to www.plagiocephaly.org/support for

> additional

> insurance issues help.

> We also have more help in our " files " section, then

> " help folder " ,

> then " insurance help " .....there's good tips in there

> that might help.

> I had to laugh at your " crockpot place " comment,

> never heard of

> that!

> Have they approved a STARband or a locally made

> helmet? Do you know?

> Welcome again to our group - best of luck with your

> ins. battle &

> please keep us updated.

> Debbie Abby's mom DOCGrad

> MI

>

> > Hello, My name is Tina. I live in Arizona and

> have 2 beautiful

> > children, Jade, 3 years and Chase, 9 months. My

> son Chase

> > was diagnosed with Plagiocephaly. His dr. wants

> him to see a

> > specific place that uses the DOC band, but the

> insurance denied

> > it because they have a contract through another

> place that uses

> > a different type of band. This whole referral

> process first began

> > on June 26th and we just got denied on August

> 6th!!!! I was

> > wondering if any of you have advice on appeals to

> your insurance

> > companies. I'd appreciate any help you could

> give. I don't want

> > my son going to some crockpot place and have them

> screw up

> > his head even worse.

> >

> > Thanks for your help,

> > Tina

>

__________________________________________________

Report post · August 8, 2002

Thank you Marci! I guess I should give the other

place the benefit of the doubt. His dr. is on

vacation this week and doesn't know about the denial

yet. So we'll see where she wants to go with this. I

just want him to get treatment soon, cause I know it

takes longer with older babies. I don't want him to

have to wear it for months and months. I'm just so

ticked off with the insurance for dragging their feet

on this! I sent a letter out just last week to God

and everyone to complain about how long it had been

taken.

Tina & Chase

--- marcisch@... wrote:

> Tina,

>

> Hello and welcome to the group. Sorry to hear about

> the lenghty delay with your insurance co,

> unfortunately that is all too common amongst members

> in this group! I would suggest that you check out

> the place that your insurance WILL cover. Many, many

> members here did not use the DOCband and got

> excellent results - my daughter included!!! We used

> a locally made helmet and were very please with the

> results. Another moderator in this group, Niki, had

> a STARband for her twins and got outstanding

> correction for both of them. Not to say that the

> DOCband isn't a great product, it is! However, there

> are other really good products out there and really

> good orthotists too and it might be worth your time

> to meet with the people at the place that is covered

> and interview the ortho there. You might be

> surprised at the experience and expertise that is

> available there. Of course, you might also decide

> that they simply do not have enough experience and

> then you could try that angle with your insurance

> company. It will be hard to get the denial

> overturned if you have an HMO and they want you to

> use the place they are contracted with. But heck,

> it's worth a try!

>

> Give the other place a call and set up an interview

> with them. You don't have anything to lose by simply

> talking to them and you might have everything to

> gain!

>

> Best wishes to you and Chase. You sound like a very

> proactive mom so I'm sure that Chase will get the

> very best care possible!

>

> Marci (mom to )

> Oklahoma

>

__________________________________________________

Report post · August 8, 2002

AARRRGHHH!!!!!!!!!!!!!!! I'm so, so sorry. I've been fighting with

Cigna since February 27th and have come down to just an External Review.

They are beatable - we just haven't done it yet. We've widdled away at them

and are just arguing one more denial reason (we started with about 5

reasons). , Gabby's mom, lives in Arizona and beat Cigna earlier this

spring. Maybe she will give you some good local advice. Let me know what

your denial reasons are and I will tell you what has worked for us so far.

Gail, Sam and Sara's mom, DOC grads

> We have CIGNA

> insurance, which the name alone says enough!

Report post · August 8, 2002

Tina,

I can TOTALLY understand your frustration with the insurance co. I can't believe

it took them over a month to come to a conclusion! It's too bad they don't

understand the importance of quick action in this situation.

Best of luck with the appeal and I think that Hangar typically makes STARbands.

What area are you from? Did you say Arizona? Maybe someone here has used Hangar

in your area.

Marci (Mom to )

Oklahoma

Report post · August 9, 2002

Hi Tina,

Welcome to the group! I see that you've already heard from Gail, she

just loooooves Cigna. It sounds like they are up to their old tricks

again with making you wait so long for the denial, I wish you tons of

luck with your appeal! Keep us posted!

Niki

Kaylie & Danny (STAR grads)

Phila., PA