Thank You!!!

[Guest guest]

i ordered the colem board from into health! i am so excited! thanks everyone

for the information...you are rad! i get it on tuesday.....can anyone

explain how it is different from an enema and how it works?

[Guest guest]

,

I have to ^5 that also. If it wasn't for this group. Faces and Georgina's

group here. I would not have made it this far. The info we share on this list is

so awesome. It like one big family here. Yall are a awesome group. THANKS so

much. Even though I was so terrified, scared. I wouldn't have missed this

Conference , Even though I cried on take off, I cried on the way back on

landing.

I put it in my head that I did this not for me but for . I did it

lolol. Now I can say to anyone who was as scared, That it was WELL worth the

fear

to attend ANY conference for your child.

Robbin

p.s.

The clouds on the top are AWESOME Looking down.

[Guest guest]

Ida,

You are blessed with quite a little man, there. My 1st grandson just

turned 5 and will also be starting kindergarten this fall. That is

such a wonderful age to be; full of fun and energy. I'm sure he will

be glad to help you when your hands don't work. It makes him feel

very important! In 6 more years he'll be Mr Attitude, so enjoy it

while it lasts.

Being new to this disease gives you a different perspective than

those who have had it for years. It stinks! But I for one cannot

maintain all the negative emotions - resentment because I'm so

restricted, anger at how unfair it is, anxiety over the future. If

you dwell on the negative, it just sucks what little energy you have

right out of you.

I think the hardest battles people with chronic illness face are the

mental ones. Scientists see that a lot of people with chronic

illness have depression. So they are wondering " does depression make

people susceptible to chronic illness? " But WE know that you can put

ANYONE in chronic pain and after a few months it's a miracle if

they're NOT depressed. Having a chronic illness is kinda like being

king of the jungle one minute and in a 10x12' cage the next. It

takes some effort (and sometimes counselling and medication) to find

the positive side of life. But we have to try.

That said, do I like having RA? Absolutely not! But it sure beats

being dead.

Nina

> Nina,

>

>

> Thank you for all your support and understanding. I just feel so

much

> better just knowing I am not alone. My oldest son has taken on

more

> jobs than I had planned but I just couldn't use my hands

sometimes.

> He is a great help and there are some days I don't know what I

would

> do without him. He is starting Kindergarten in the fall and I

just

> can't believe that he is growing up so fast. My mother-n-law has

RA

> too but she is in a totally different state than I am in. She

said

> that I am teaching my boys compassion and they will be better for

it.

> I haven't gotten to that way of thinking yet. She thinks she is a

> better person for having the disease and right now I can't think

of

> anything good about this disease. Maybe someday!!!

> Thanks again,

> Ida

[Guest guest]

Nina,

WELL SAID! TRACIE

> > Nina,

> >

> >

> > Thank you for all your support and understanding. I just feel

so

> much

> > better just knowing I am not alone. My oldest son has taken on

> more

> > jobs than I had planned but I just couldn't use my hands

> sometimes.

> > He is a great help and there are some days I don't know what I

> would

> > do without him. He is starting Kindergarten in the fall and I

> just

> > can't believe that he is growing up so fast. My mother-n-law

has

> RA

> > too but she is in a totally different state than I am in. She

> said

> > that I am teaching my boys compassion and they will be better

for

> it.

> > I haven't gotten to that way of thinking yet. She thinks she is

a

> > better person for having the disease and right now I can't think

> of

> > anything good about this disease. Maybe someday!!!

> > Thanks again,

> > Ida

[Guest guest]

>

> Hi, I wanted to write and tell everyone thanks for their support, but I

> will be leaving the list. I found out recently that I never really had

> lyme, it was diabetes that was causing all of my problems. That is why

> I never got better. Now that I am going through treatment for diabetes

> I feel sooo much better. Thank you again for everything....eve

>

CONGRATULATIONS EVE! TAKE GOOD CARE

[Guest guest]

Helen:

Glad to hear that Nick is taking it all in stride. I just wanted to add

my 2 cents worth about our kids...you know, when Rob was diagnosed with

the kidney disorder he, too, took it all in stride and still does. Even

though he knows what eventually may happen to his kidneys, he lives his

life one day at a time and doesn't worry about what could be. I think

that growing up with these challenges just makes our kids that much

stronger. In turn, I get strength from Rob! I know that he will do well

whatever happens. And so will you, Nick ,and your whole family. Praying

that all is well with the rest of the kids. Keep us posted.

Love,

and Rob 16 Spondy

On Sat, 04 Feb 2006 00:34:44 -0000 " hburger64 " <hburger64@...>

writes:

Hi everyone,

Thank you so much for the messages of concern and support. Its just

what I needed today.One of the great things ive learnt from this

list since Nick was dx nearly 3 years ago is thatI now am better at

advocating for my kids, how to ask questions and how to educate

myself.

I have spent today talking with the geneticist. I just love that she

takes the time to listen to me and my concerns. (14) will

have his echo and see the cardiologist on feb 22nd and the

geneticist has prioritized our file so when I call to schdeule

s appt to see her I wont have to wait 5-6mths to get in.

The good news is is feeling well, we even tapered .5mg of

his prednisone, we are down to just 1mg a day now. O. He is

taking all this in his stride, he really is a resilient kid. He just

rolls with the punches. I am so proud of him and in awe of his

spirit. We have an awful lot to be so grateful for..

To answer some of your questions....

.... I would assume the connective tissue disorder is in

addition to his JRA. I have not read, or its not been mentioned by

any of the doctors, that his arthritis is caused by whatever

connective issues he has, not considering the systemic part.

Sandi...... nick is going great with dealing with it... hes a real

trooper, plus I dont think it really makes much sense to him right

now.

Patty..... no need for dental prophylaxis yet, although it might be

in the future. Nick actually had the echo back in November, but the

report was sent to the wrong doctor and I figured no news was good

news so i didnt follow up. It was not until the genetics clinic

called me a couple of weeks ago to find out when i was going to have

the echo done that we found out that there was a break down in

communication. I guess it is partly my fault for not following up on

it. I have learnt from this that I must ALWAYS find out test results

and not relay on being called if theres an issue. Lesson Learnt.

Again, thanks for the support, you guys are the best.....

hugs Helen and (8 systemic)

[Guest guest]

Helen,

My message comes a bit late but your family is

always in my thoughts and prayers. I'm hoping that

Nick can stay stable with this heart condition and

that it has not affected any of your other kids. I'm

so glad to hear that Nick is doing so well on the

Remicade he really deserves it!!

Lots of Love

(21, JAS)

--- hburger64 <hburger64@...> wrote:

---------------------------------

Hi everyone,

Thank you so much for the messages of concern and

support. Its just

what I needed today.One of the great things ive learnt

from this

list since Nick was dx nearly 3 years ago is thatI now

am better at

advocating for my kids, how to ask questions and how

to educate

myself.

I have spent today talking with the geneticist. I just

love that she

takes the time to listen to me and my concerns.

(14) will

have his echo and see the cardiologist on feb 22nd

and the

geneticist has prioritized our file so when I call to

schdeule

s appt to see her I wont have to wait 5-6mths

to get in.

The good news is is feeling well, we even

tapered .5mg of

his prednisone, we are down to just 1mg a day now.

O. He is

taking all this in his stride, he really is a

resilient kid. He just

rolls with the punches. I am so proud of him and in

awe of his

spirit. We have an awful lot to be so grateful for..

To answer some of your questions....

.... I would assume the connective tissue

disorder is in

addition to his JRA. I have not read, or its not been

mentioned by

any of the doctors, that his arthritis is caused by

whatever

connective issues he has, not considering the systemic

part.

Sandi...... nick is going great with dealing with

it... hes a real

trooper, plus I dont think it really makes much sense

to him right

now.

Patty..... no need for dental prophylaxis yet,

although it might be

in the future. Nick actually had the echo back in

November, but the

report was sent to the wrong doctor and I figured no

news was good

news so i didnt follow up. It was not until the

genetics clinic

called me a couple of weeks ago to find out when i was

going to have

the echo done that we found out that there was a break

down in

communication. I guess it is partly my fault for not

following up on

it. I have learnt from this that I must ALWAYS find

out test results

and not relay on being called if theres an issue.

Lesson Learnt.

Again, thanks for the support, you guys are the

best.....

hugs Helen and (8 systemic)

[Guest guest]

>

> Bee, Thank you ever so much for your support. Your email support

has been extremely helpful to me and I truly thank you for your quick

responses.

>

> In this slightly overwhelming last two days I haven't really

thanked you enough for running your website and this support forum.

But I want you to know how much hope it has brought to me and I

really, really appreciate it. The site is so well done/designed and

all the information is extemely well written and organized. It has

been so interesting to read the articles etc. So thank you.

>

> I am feeling very good today. I totally realize that I was putting

my body into a little bit of a chock by changing overnight something

I should have done over a month. Now I have a one month plan ahead

of me and I'm so excited to make the slow change. I took some C

vitamin and ate some bean soup (something my body is really used to)

and within 30 minutes the rash had calmed down and it was totally

gone this morning.

>

> Edno diet, actually, in my panicked state yesterday I made a typo,

I meant the Endo diet ie, a diet for endometroisis sufferers. That

diet is simply put: vegetables, fruits, fish, organic poultry, LOW

FAT, all grains except wheat, no dairy, no red meat, no refined

sugars, no alcohol.

<snip>

Dearest , I'm so glad you've got hope that you can trully get

healthy! You are so very welcome for all of the information, and

thank you for acknowledging my website. Thanks for the design, set

up and work goes to my wonderful moderator and friend Debby Padilla-

Hudson! She is an extraordinary person with skills, brains, and a

passion to help others!

Thanks for explaining what the Endo diet is. I believe this program

will help endometriosis too.

I'm so happy you are part of this group . It's onward & upward

from here on out (even though there will be ups and downs along the

way).

Luv & Hugs, Bee

[Guest guest]

Congratulations ! Sounds like you had great results. I would love

to see pics of his success if you get a chance.

take care.

-christine

sydney 21 mo starband grad

>

> My son, , graduated from his helmet today after 7 weeks and I

can't thank everyone in this online community enough for all the

support you've given me during this time. He was treated at the

ndale, Virginia Cranial Tech location just after his 4 month

birthday. He went through some incredible growth spurts during the

past two months and we were fortunately able to correct his plagio

from the moderate range (15 mm) to the normal range (3 mm) and think

his head now looks amazing. I wish everyone on this journey the best

of luck with your little ones and I thank you again for all of the

advice and encouragement.

>

> Best, Beth

>

>

>

________________________________________________________________________________\

____

> Don't let your dream ride pass you by. Make it a reality with

Autos.

> http://autos./index.html

>

[Guest guest]

Congratulations. I am so excited for you. I hope you will add before and afters.

Angie

Thank You!!!

My son, , graduated from his helmet today after 7 weeks and I can't thank everyone in this online community enough for all the support you've given me during this time. He was treated at the ndale, Virginia Cranial Tech location just after his 4 month birthday. He went through some incredible growth spurts during the past two months and we were fortunately able to correct his plagio from the moderate range (15 mm) to the normal range (3 mm) and think his head now looks amazing. I wish everyone on this journey the best of luck with your little ones and I thank you again for all of the advice and encouragement. Best, Beth__________________________________________________________Don't let your dream ride pass you by. Make it a reality with Autos.http://autos./index.html

[Guest guest]

Not sure what exactly you're referencing, but I'll just say YOU'RE WELCOME

as a whole!

LOL

Becky

In a message dated 3/24/2008 1:25:50 P.M. Eastern Daylight Time,

girid15@... writes:

just want to say thank you for this group. I don't post often but love to

read the messages and know I'm not alone.

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

It is we who should thank you, Beth, for all your support and positive thoughts, prayers, and hugs for all of us over the last few years. We are glad that we, your 'cyber' family, could give you some small measure of comfort.

Your dad's service sounded wonderful. It is so meaningful when family members all contribute to truly celebrate a person's life. May all of these things continue to bring comfort to your mom and you and your family, extended family.

My thoughts and prayers will continue to be with you.

and Rob 19 JAS THANK YOU!!! > Hi everyone:> Thank you all so much for your condolences, prayers and cyber > hugs during this difficult time. Dad's funeral service was last > night and was beautiful. It was dad's wish that Hannah sing > for him. She knew she could never do this without losing it. > My brother-in-law then offered the use of his studio (he's in > advertising) and recorded Hannah singing "Amazing Grace" with my > other brother-in-law playing guitar. He then made us all a DVD > of it and it was then played during the service..it was very > moving. We are now ready to begin the healing process.> > I need to say a few special thank yous: to those that > sent cards during dad's illness, know that he (and mom) > were truly touched. Dad was still a little perplexed by our > cyber friendship, but he knew what each and every one of you > mean to me and it brought him great comfort.> > To MARIA: thank you for your kind words on Dad's guest-book > page. How you ever found his death notice it beyond me, but > thank you so much for posting it. Mom was touched very much by > your words of kindness.> > To COLLEEN: Thank you for your beautiful poem. It so captured > by my dad's spirit, I had my best friend read it during the > funeral service last night. Everyone loved it.> > Sending love and hugs to you all!!> > Mike, Beth, Jay & Hannah Yohnk

[Guest guest]

Hi Beth,

We have been out of town for a while and I just checked in tonight

and was shocked to read about your dad. The last post I had seen was

regarding his breathing troubles but mentioned the cancer was under

control.

I know that you are a close knit family and this has been so hard for

all of you.

I know it must have broken your heart to hear Hannah sing amazing

grace for her grandpa and yet I'm sure you were also proud of her

ability to do it. (the recording was a wonderful idea)

I will let Aundrea know about Hannah's grandpa. She will be in touch

with Hannah.

We were out of town visit my parents. Aundrea is very close to her

grandparents as well. I can't imagine being without my mom and dad.

The thing is it doesn't matter if we are 18 or 80, the sadness of

saying goodby to the person that gave you life is never easy.

You are in my prayers.

(Aundrea 12 fibromyalgia)

-- In , Beth Yohnk <yohnkmom@...> wrote:

>

> Hi everyone:

> Thank you all so much for your condolences, prayers and cyber hugs

during this difficult time.  Dad's funeral service was last night and

was beautiful.  It was dad's wish that Hannah sing for him.  She knew

she could never do this without losing it.  My brother-in-law then

offered the use of his studio (he's in advertising) and recorded

Hannah singing  " Amazing Grace " with my other brother-in-law playing

guitar.  He then made us all a DVD of it and it was then played

during the service..it was very moving.  We are now ready to begin

the healing process.

>  

> I need to say a few special thank yous:  to those that sent cards

during dad's illness, know that he (and mom) were truly touched.  Dad

was still a little perplexed by our cyber friendship, but he knew

what each and every one of you mean to me and it brought him great

comfort.

>  

> To MARIA:  thank you for your kind words on Dad's guest-book page. 

How you ever found his death notice it beyond me, but thank you so

much for posting it.  Mom was touched very much by your words of

kindness.

>  

> To COLLEEN:  Thank you for your beautiful poem.  It so captured by

my dad's spirit, I had my best friend read it during the funeral

service last night.  Everyone loved it.

>  

> Sending love and hugs to you all!!

>  

> Mike, Beth, Jay & Hannah Yohnk

>

[Guest guest]

I want to thank all of you for all of the wonderful replies that you

sent about my mom's condition and treatment. Reading the testimonials

on AP treatment has me convinced that this is the way to go.

I got a list of California AP doctors from the site suggested.

They're all far away so I'm going to give my mom's rhuemetologist one

more chance to work with us on this, since my mom is with Kaiser

Permanente and everything is put into the computer system for all of

the doctors to refer to..plus it's her insurance, which covers a

lot..as long as it's a Kaiser doctor. She's not thrilled on the

thought of going to a doctor outside of Kaiser...so let's hope.

Good news today! We went to the cardiologist for Mom's echo

cardiogram results..and everything came back normal!! So, I'll take

that as good news, since the doctor said that he didn't see any

indication of disease from scleroderma, as far as her heart goes.

Whew! Her blood pressure was up though. The rheumy took her off of

some pills that the cardiologist thought may have been helping her

blood pressure..so she'll go back on those (more atenolol and

lisinopril). The rhuemy though the lisinopril may have aggravated her

cough. Did I mention that my mom is on a lot of meds? A lot!

Anyway, thank you all so, so much! I'm going to print up all of your

encouraging emails for my mom to read. She was feeling a bit

hopeless, and I know this will perk her up.

Blessings...

Cheryl