New to Group

[Guest guest]

Welcome Dixie, I am 41 years old, married, I have 2 daughters 22 and

9. I have lived in Oklahoma all my life. I am so glad you joined

the group, hugs Tawny

> Hi!

> I just joined the group. After reading what was at the home

site, it sounded just like what I've been looking for.

> My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also

warn you that I'm bipolar, and when any of my mania is present, I can

get silly, goofy, loquacious, and just a tad crazy-funny. Humor is

one of the ways I use to cope with my illnesses, so I hope it has a

place in this group.

> Dixie is my nickname, and I tend to go by Dix, which is what my

sisters call me, as well as a few close friends. I'm married to Dan

for nearly 34 years, have 7 grown children, 3 grandchildren, and one

doggie, a 6 month old male Maltipoo named Bobo.

> My hobbies are gardening, cooking, reading, and playing with my

computer.

> That's about it.

> I'd love to hear from you letting me know a little about you.

I look forward to meeting you, and getting to know you better and

becoming friends.

> Dix

>

>

>

[Guest guest]

Hi Dixie, I just wanted to welcome you into the group. My name is

and I live in southern CA. I am 50 yrs.old and I have two grown

boys, one is in the Army and in Iraq. I also have a daughter who

still lives with me, she is going to college and she happens to be

my best friend, and she helps me take care of the house and two of

my 7 grandkids, that have lived with us for the past 9 yrs.

I had to lol when I read your illnesses, what is IA and AS? My

illnesses are RA, OA and Degerative Arthritis.

I hope that you keep posting. I am fairly new to the group, but I

have noticed that its a great group of people, and that they are

loving and caring.

Talk to you later: ROSA

> Hi!

> I just joined the group. After reading what was at the home

site, it sounded just like what I've been looking for.

> My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also

warn you that I'm bipolar, and when any of my mania is present, I

can get silly, goofy, loquacious, and just a tad crazy-funny. Humor

is one of the ways I use to cope with my illnesses, so I hope it has

a place in this group.

> Dixie is my nickname, and I tend to go by Dix, which is what

my sisters call me, as well as a few close friends. I'm married to

Dan for nearly 34 years, have 7 grown children, 3 grandchildren, and

one doggie, a 6 month old male Maltipoo named Bobo.

> My hobbies are gardening, cooking, reading, and playing with

my computer.

> That's about it.

> I'd love to hear from you letting me know a little about you.

I look forward to meeting you, and getting to know you better and

becoming friends.

> Dix

>

>

>

[Guest guest]

Welcome, Dix! Glad you found us. Sorry about all of your diagnoses.

Yes, a sense of humor is most welcome and much needed here! Please feel

free to be yourself.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hi!

> I just joined the group. After reading what was at the home site,

it sounded just like what I've been looking for.

> My diagnoses are: RA, OA, IA, DDD, AS, and fibro. I'll also warn

you that I'm bipolar, and when any of my mania is present, I can get

silly, goofy, loquacious, and just a tad crazy-funny. Humor is one of

the ways I use to cope with my illnesses, so I hope it has a place in

this group.

> Dixie is my nickname, and I tend to go by Dix, which is what my

sisters call me, as well as a few close friends. I'm married to Dan for

nearly 34 years, have 7 grown children, 3 grandchildren, and one doggie,

a 6 month old male Maltipoo named Bobo.

> My hobbies are gardening, cooking, reading, and playing with my

computer.

> That's about it.

> I'd love to hear from you letting me know a little about you. I

look forward to meeting you, and getting to know you better and becoming

friends.

> Dix

[Guest guest]

In a message dated 8/3/04 8:43:12 PM Eastern Daylight Time,

sand8013@... writes:

> >>>What is the book you guys keep referring to? NT?

>

> Nourishing Traditions by Sally Fallon :-)

> http://www.westonaprice.org/book_reviews/nourishing_traditions.html

Really? All this time I thought it was referring to the four Gospels and the

letters of the Apostles. I figured " traditional foods " were what the

apostles ate 2000 years ago. Who's Sally Fallon?

Chris

[Guest guest]

> I don't appreciate your smart-arse reply. It often takes new members

> a little while to catch onto the lingo of a group. How about being a

> bit more considerate?

I wasn't being sarcastic, just humorous. You know, NT = New Testament; OT =

Old Testament. I don't think I said anything implying the person should have

known what " NT " stood for. Is a giggle now and then ok?

By the way, it would probably be useful to develop a list of abbreviations

commonly used on this list, upload it to the files section, and link to it in

the welcome email of the list. Or just print it in the welcome list.

Chris

[Guest guest]

In a message dated 8/3/04 11:24:20 PM Eastern Daylight Time,

sand8013@... writes:

> >>>I wasn't being sarcastic, just humorous. You know, NT = New Testament;

> OT =

> Old Testament. I don't think I said anything implying the person should

> have

> known what " NT " stood for. Is a giggle now and then ok?<<<

>

> That's all well and good for people who've been around for a while, but

> unsuspecting newbies could easily take offence.

Are you an unsuspecting newbie? I thought you'd been around for a while.

Chris

[Guest guest]

>>>What is the book you guys keep referring to? NT?

Nourishing Traditions by Sally Fallon :-)

http://www.westonaprice.org/book_reviews/nourishing_traditions.html

Cheers,

Tas'.

[Guest guest]

> Really? All this time I thought it was referring to the four

Gospels and the

> letters of the Apostles. I figured " traditional foods " were what

the

> apostles ate 2000 years ago. Who's Sally Fallon?

>

> Chris

I don't appreciate your smart-arse reply. It often takes new members

a little while to catch onto the lingo of a group. How about being a

bit more considerate?

Tas'.

[Guest guest]

Sorry, but what better way to initiate new members to the folks on this

list?

And really, if you subscribe to a list serve that discusses Nourishing

Traditions........it just isn't that huge of a mental leap to figure out

what book NT is an acronym for!

Not that I'm picking sides, but I thought Chris' comment was humorous.

Nanette

[Guest guest]

>>>I wasn't being sarcastic, just humorous. You know, NT = New Testament; OT =

Old Testament. I don't think I said anything implying the person should have

known what " NT " stood for. Is a giggle now and then ok?<<<

That's all well and good for people who've been around for a while, but

unsuspecting newbies could easily take offence.

>>>By the way, it would probably be useful to develop a list of abbreviations

commonly used on this list, upload it to the files section, and link to it in

the welcome email of the list. Or just print it in the welcome list.<<<

I think that would be a good idea.

Cheers,

Tas'.

[Guest guest]

>>>Are you an unsuspecting newbie? I thought you'd been around for a while.<<<

I'm not the unsuspecting newbie. You were making fun of my reply to the

unsuspecting newbie.

Tas'.

[Guest guest]

Hi . Welcome to the group.

> Hello My name is and I am 40 yo. I was diagnosised with

RA

> three years ago. I was on meds but I am currently off meds. My

> doctor is starting Methotrexate injections once he reviews my

> labwork. I look forward to meeting others and learning more about

> this disease.

>

>

[Guest guest]

Welcome, ! I'm looking forward to learning more about you.

Hope you'll like it here.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hello My name is and I am 40 yo. I was diagnosised with RA

> three years ago. I was on meds but I am currently off meds. My

> doctor is starting Methotrexate injections once he reviews my

> labwork. I look forward to meeting others and learning more about

> this disease.

>

>

[Guest guest]

Hi and welcome to the group! It's nice to know that you have

some local support with and Amy. Let us know when you get

that appt with the craniofacial specialist and how it turns out.

Many pediatricians have been blind to plagio but we are seeing that

they are coming around these days. It takes awhile for them to get

the word, but they do eventually get it.

Again, Welcome to the group!

Dustie, Mom to , DOCGrad'03

Texas

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We

are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her

two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with

three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

Hi ,

Welcome to the group. Though it may be frustrating that you have

lost two months, on the other hand, MacKenzie is still much younger

than most babies seeing specialists. I hope it doesn't take too

long for you guys to get an appointment. Please keep us updated!

, mom to Hannah, DOCgrad

Cape Cod, Ma

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We

are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her

two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with

three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

Hi ,

Welcome to the group!! I am sure Amy will contact you very soon. She

is very very familiar with MN helmets and all the protocol. She'll

have excellent suggestions. Don't worry about your daughters age.

She's at an excellent age for great correction, even if she doesn't

get the helmet for another 2 months, she's still ahead of the game.

Your daughter will be on her way to rounding before you know it. My

daughter didn't get in until she was 8 months old (her doc made me

wait until she was 6 months.. then another 2) and she still had good

results, even after using a passive helmet.

Please keep us posted!!

, mom to Makenna LLUMC helmet grad '03.

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

Hi ,

Welcome to the group. My we have a lot of folks from MN now. You

guys are really on the ball. Let us know how the appts go.

mom to na

DOC Grad

SC

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

Hello

Welcome to the group. Good luck with your appointment, and let us

know what they say.

Can you post some pictures of your daughter? We love pics around here

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad

--- In Plagiocephaly , " mcasper10 " <mcasper10@h...>

wrote:

> Hi, my name is and I have a 4 month old (today!) duaghter

named

> MacKenzie who is just got her referral today for her plagio. We are

> in the Twin Cities area in Minnesota and I have been talking to

> already and hope to talk to Amy.

> We noticed her head flattening on the back left side before her two

> month appt. at pediatrician. I brought it up and he said if it was

> still flat at 4 months he would give us a referral. Wish I had

known

> then what I know now, we wasted two months. Anyways, we got our

first

> referral today. I have a call into the Craniofacial team, waiting

to

> hear back to get an appt.

> I have learned so much in the past weeks from these boards and all

> the wonderful info on the website, I would just like to say tahnk

> you. Like another poster said today, she thought she knew

everything

> about parenting, I have two boys ages 12 and 9, but they were in

the

> time where we put them to sleep on their sides, never dealt with

this

> before.

> I will be posting when I can, but life is pretty hectic with three,

> thanks again for all the info everyone has posted!

>

[Guest guest]

Hi ,

My gosh it's hard to keep up with this group!!!!

Riley has been going to PT 1x week since he was 2 1/2 months old.

We are now trying to see if he qualifies for our states early

intervention program. The OT and PT would then come to our house.

We are going to the Cranial Technologies in Glenview ,IL its about

1hr15 min away from us. His ped just gave us the letter of medical

necessity and script.

Thanks for the welcome,

mom to Riley 41/2months(Tort, Plagio, Low Tone, Asym) and 3.

>

>

[Guest guest]

Hi Natasha,

Thanks for the info!

Yes, he has it in both of his SCM. From what we are told it's not

unheard of but his Ped. Orthopedic Surgeon said Riley is the first on

out of 500 Tort patients he has seen!

We are going to the CT in GLenview ,IL

Thnaks,

mom to Riley 41/2months(Tort, Plagio, Low Tone, Asym) and 3.

--- In Plagiocephaly , " Natasha Gubash " <ngubash@y...>

wrote:

> Hi ,

> Welcome to the group. I'm interested in Riley's tort, it is on

both

> sides of his SCM?

> As for breastfeeding, we have had many members continue to

breastfeed

> while their baby is banded. I think that it is uncomfortable for

the

> mom until you can find a good position, most like to put a pillow

> under their child's head.

>

> The first appt after receiving the band will be about an hour so

that

> they can check for any fit problems. After that the appts are very

> short, usually just 10-15 minutes unless you've had any red spots,

> then there will be an additional adjustment and they will ask you

to

> hang around a few more minutes to make sure that the fit is ok.

>

> What location are you using?

>

> Natasha

[Guest guest]

Yes, we have chosen this illness by not choosing our parents more

carefully, LOL. When it comes to genes passed down, you just get pot

luck. If there had been choice involved, I would have chosen some other

disease.

The way of living with RA before my rheumy found the best drug for me

was to live in constant pain. I couldn't open a bottle or jar; I

couldn't wring out a dish cloth or wash cloth or a mop; I had to pee

standing over the commode because it hurt too much to bend my knees; I

couldn't cut my own meat.

Thank goodness there are drugs that give some of us some relief.

Sue

On Wednesday, September 8, 2004, at 04:53 PM, Adrienne wrote:

>

> Do any of you feel that at some level we have chosen this illness and

> that

> we can make different choices? I expect I'll offend some of you who

> have not

> come across this concept by saying this; forgive me. Has anyone found

> a way

> to live with RA that doesn't involve drugs?

[Guest guest]

Hi Adrienne and welcome to the group.

Countless people have had no choice but to live with RA without the

drugs. My mom was one of them, becuase she got RA before the drugs

were available. I grew up watching her suffer. For years her

doctors gave her aspirin and said to wait and see what happened.

Well, they waited and saw her body completely deteriorate because of

the joint desctruction. Today she is disabled (can't work, can't do

many things she wants to do), has very disfigured hands and feet,

her ankles and wrists are falling apart and she is in almost

constant pain. And keep in mind, she's on good drugs now. The pain

and problems she has are from irreversible joint damage she suffered

in the early years of the disease.

I was diagnosed a year ago. Because I started treatment right away

with medication, and I was fortunate to have a good rheumatologist

and that the medications I tried worked well for me, my outlook is

much different from my mother's. I do not expect to be disabled or

disfigured. And my odds of living the rest of my life the way I

want to, with some limitations due to fatigue and the occasional

flare, are very high.

I understand disdain for the drugs. I never took medication for any

reason before the RA. I always let my body heal itself, as it was

designed to do. And if I had not watched my mother suffer, and had

not known before I even got RA, that today's biological drugs truly

are miracles and the closest thing we have to a cure, then maybe I

would feel the way you do. But I know first hand that the

medications will never harm me as much as the RA will.

This group has a wonderful, diverse membership and I am glad you

have joined us.

Jennie

> I'm particularly interested in learning how to live with this

disease,

> particularly to get some kind of psychological perspective. I've

been

> reading a fascinatng book called The HEaling Power of Illness by

Thorwald

> Dethlefsen which gives some insight into illness and this one in

particular.

> Do any of you feel that at some level we have chosen this illness

and that

> we can make different choices? I expect I'll offend some of you

who have not

> come across this concept by saying this; forgive me. Has anyone

found a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

>

[Guest guest]

Adrienne,

Welcome to our group. We all wish there was a way to treat this disease

without drugs, but unfortunatly for me it hasn't happened. A few lucky

people have found that food allergies were the cause of the inflammation and

dietary changes improved their arthritis but aren't a cure. Supplements

have shown to help inflammation but not cure the disease.

The meds we take also don't cure the disease but have the potential to put

us in drug induced remission. The problem with trying non-drug routes, is

that this disease can erode joints without you being aware of what is

happening until it is to late. RA drugs can slow the progression of the

erosion. Early treatment with RA drugs has the best chance of causing

remission.

As the owner of this group, I've read many accounts of the start of this

disease, and think the theory of Thorwald Dethlefsen that symptoms are

expressions of psychological conflicts, and can only be healed when we

become aware of what is behind the problem, is full of bunk. Many very

active, happy, successful people have been struck with this disease

overnight. How can this theory apply to infants and children that are

affected with this disease? I know he also believes in reincarnation, so I

guess he believes we chose these diseases in previous lives.

a

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and in that

> time I've been trying to make it go away through changing my diet radically

> and taking supplements like fish oils, vitamins and glucosamine.

>

> The attacks have reduced in severity and length but I've just recently

> accepted that RA is here to stay.

>

> I'm particularly interested in learning how to live with this disease,

> particularly to get some kind of psychological perspective. I've been

> reading a fascinatng book called The HEaling Power of Illness by Thorwald

> Dethlefsen which gives some insight into illness and this one in particular.

> Do any of you feel that at some level we have chosen this illness and that

> we can make different choices? I expect I'll offend some of you who have not

> come across this concept by saying this; forgive me. Has anyone found a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

[Guest guest]

Welcome, Adrienne! Sorry about your RA diagnosis.

In cases of true RA, especially those which are characterized by

aggressive, erosive disease, it would be foolhardy to abandon DMARDs as

part of therapy.

Although I'm not familiar with Dethlefsen's theory or book, no, I don't

believe that " at some level we have chosen this illness. " As a

pointed out, very young children suffer from RA and other terrible

diseases. How would that sort of notion apply to them? In general, I

believe the " blame the patient " theories are quite harmful.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New to group

> Hi

> I'm Adrienne from England. I was diagnosed with RA a year ago and in

that

> time I've been trying to make it go away through changing my diet

radically

> and taking supplements like fish oils, vitamins and glucosamine.

>

> The attacks have reduced in severity and length but I've just recently

> accepted that RA is here to stay.

>

> I'm particularly interested in learning how to live with this disease,

> particularly to get some kind of psychological perspective. I've been

> reading a fascinatng book called The HEaling Power of Illness by

Thorwald

> Dethlefsen which gives some insight into illness and this one in

particular.

> Do any of you feel that at some level we have chosen this illness and

that

> we can make different choices? I expect I'll offend some of you who

have not

> come across this concept by saying this; forgive me. Has anyone found

a way

> to live with RA that doesn't involve drugs?

>

> Many thanks

> Adrienne CAmpbell

[Guest guest]

Sue,

Just out of curiousity - what disease would you have picked?

I can think of tons that are worse than RA, particularly those that

can kill you or one's that there are no effective treatments for. I

would not want to have gotten RA 15 years ago, but I don't think

getting it today is nearly as bad as some other things I could have

gotten.

Now, if I had to choose I would have not gotten anything. That is

for sure. But I am not sad about getting it (not all the time at

least). RA has forced me to re-assess every single thing in my life

and determine what really is important to me. As a result, I am much

happier than I was a year and 1/2 ago.

Jennie

If there had been choice involved, I would have chosen some other

> disease.

>