Re: (unknown)

[Guest guest]

Hi

Not only do they have boyesberries in that

area of Oregon there are also the marianberries

which are yummy.....baked in a cobbler of

course......On the south end of Whidby Island

Washington there is a winery that makes a

loganberry wine & liquer that is sooo good

.....tastes just like the fresh berries......

well, now to wipe the drool of the keyboard

and retreat back to lurkdom.....lol

Teddi - dm

[Guest guest]

Hi ,

I am so sorry quitting this smoking thing is so difficult, but I do

understand. I would kill for my diet Dr. Pepper. It is the one thing I

refuse to give up. I have given up so much due to my illness and I feel

like I deserve one thing during the day that tastes good and makes me feel

good emotionally. It is certainly a caffeine addiction, but my grandfather

introduced me to this drink when I was a little girl and I think it is also

an emotional thing as well. Hang in there!

I bought a quad cane today. I have already discovered it is going to make

things safer for me. I don't look sick and I often get shoved and pushed or

knocked by accident because I don't move fast enough for others. I guess

they think I am just being aggravating, but with the cane they can look and

see that there is obviously a problem. Sad that we have to resort to

something like that to get respect, but it happens. I had a lady almost

push me down on the boat Sunday and I wanted to scream at her, " I am moving

this way for a reason, do not push me. " This way I have something to lean

on when standing in a line and the quad is great if you need to let go to

get something out of your purse because it stands by itself.

I guess I have gotten over the pride issue and now am grateful to have it.

My boys were even more considerate opening doors and helping me carry things

today. I certainly don't need it for every little thing or in the house,

but now I don't have to worry so much about falling. I was really getting

worried about being pushed over by an unsuspecting person. I am having a

really hard time with my balance, so I was afraid if someone brushed up

against me wrong when I didn't see it coming that I might fall right over.

I know I am bumping into things at home like crazy.

We are leaving here next Wed if everything goes as planned. We decided to

leave a few days early because we are all anxious to get home. I am also

getting nervous being this far away from my doctor with my symptoms getting

worse. That will give me almost two weeks to get the kids ready to go back

to school as well. There are several doctor's appointments for all of us so

I don't want to have to rush around too much. I know I need to rest. The

only plans we have are to take Brad out to dinner Thursday night for his

birthday and to go to Rattlesnake Mountain this weekend. You can drive

almost all the way up and the walk is very short from what we have been

told. I should do find as long as I go slow and take my cane. If I don't

make it, I can turn around and go back. The rest of the trip I will be

vegging out on the sofa. The guys can move everything into storage and into

the trailer.

Gentle hugs,

Fern

[Guest guest]

This long post deals with mulberries, and my take on a child's

perspective of disease/disorders from personal experience.

We've got a mulberry tree out back. What I learned in trying to

figure out whether mulberries were edible or not was that mulberry

trees were originally cultivated because the leaves are edible... for

silkworms. I believe the berries are human-safe, too. At least I

think they are. I ate about half a pint and saw no serious adverse

effects. Didn't feed them to the kids.

: if I might be so bold, I think the word you were looking for

is " resilient. " You're right about kids! I was born with Poland's

Syndrome/Syndactyly (pectoral dysplasia-dysdactyly) a rare birth

defect whose cause is unknown but believed to be a problem during

fetal development rather than genetic. Early on I faced surgery to

improve the articulation of my right hand, which was underdeveloped

and webbed. Certain muscles are missing in my chest. Skin grafts were

taken from my thighs I was old enough to remember having the

stitches, perhaps a little younger than Mattie. However, it seemed

normal to me because I didn't know any different.

Sure, I knew I was different as I got older, but I took it in stride.

My parents were always worried that I would be sensitive about my

hand, or the other problems. They always told me they were impressed

with the way I handled the whole thing. However, I never knew any

other way. I remember feeling there was a purpose to all things, and

a balance.

This gives me a little perspective on Mattie's point of view. I think

she'll be a happy person if we treat it like simply a fact of life,

and teach her what she needs to do to stay healthy. And, of course,

support her natural curiosity.

Peace,

-

--

J. P. Burke .... drmomentum@...

Epinions profile: <http://drmomentum.epinions.com/user-drmomentum>

" Rest in reason. Move in passion. " - Kahlil Gibran

[Guest guest]

,

I think you are handling Mattie's situation very well. I believe that we

should not keep secrets from our children. Not that we should tell them

things that they are not ready for, but as a parent I usually have an

instinct about what they are ready to here. They will also clue you in

about what they want to know by how they ask questions and what they ask.

We just have to be open to their questions so they will keep asking and we

have to be prepared.

Funny story. One night at the dinner table when my oldest was really

getting interested in where babies came from, he asked me, " How does the

baby get out of the mommy's tummy? " Since I had a feeling I knew the

question was coming and he was in kindergarten and I didn't want him going

to school using anatomically correct words at that point. My calm answer

was, " The birth canal. " He responded with okay and went right on eating

dinner. I didn't have to explain the " birth canal " for another year or two

and I didn't have to tell more details in front of his younger brother who

was only 4 at the time. Of course it was difficult to keep a straight face

and not laugh. My husband couldn't believe I got off that easy. He is not

12 and we have had " the talk " many times and he remembers what I told him.

He said he really didn't want to know more back then and my answer was a

good one because I didn't lie or fidget, I just answered matter-of-factly.

I think that is all they want. They want to know they can come to us and

depend on us and as long as they feel safe, they can deal with just about

anything. I think it is the kids that don't have that support from their

parents that are the ones who get into trouble.

Keep up the good work with the kids!

Fern

[Guest guest]

,

I got the biggest laugh over your comment about whacking someone with the

cane. My kids told me to do it and then I said, " I could do that with you

too if you don't behave. " Of course I would never do it, but it sure is

tempting when someone is being rude.

Gentle hugs,

Fern

[Guest guest]

> How's Miss Teddi and Fern and Anne-Marie and and and

> Jim and Ralph and any lurkers doing?

We're on vacation this week. We're not going away anywhere, but we do

have plans for a couple of day trips. Today, we're going to an

amusement park (I *love* the big coasters), and we also have tickets to

the Van Gogh exhibit in Boston.

is doing great. I mean, her strength is perfect - she did 20

sit-ups for us the other night, and she couldn't do any just 3 or 4

months ago. 's mom is the big worrier, and a couple of things

have her worried now. got a few mosquito bites at a cookout this

past Sunday. That shouldn't be a big deal, except there is believed to

be West Nile Encephalitis possibly going around in infected skeeters.

I'm the realist, and the chances of infection at miniscule, but mom

worries anyway and manages to transfer some anxiety to .

The other thing is we got a probably anomylous result from 's last

batch of blood work. Her Aldolase (a measure of a muscle enzyme) was

70.4, which is out of sight. Last month, it was 6, and even when she

had a flare last year, it never got over 16. I think this is a lab

error, and even her rheumy is ignoring it, but again, mom will worry

until we get retested next month.

Thanks for asking :-)

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Hi

Mulberries are definiately safe for eating.....we

had both white and red mulberry trees when I

was growing up and kid like I ate my share of

them........the main problem with the trees is

a combination of berries, birds & cars..nuff

said!

Teddi

[Guest guest]

Hi Ralph

I think this is what I resent most about these

diseases......it makes such cowards of us

.....things that would normally be ignores

become bid " what if's " ....It's a constant

battle not to let part of it completely take

over your life.

Now.....anyway you could stick me in your

pocket for that Van Gogh exhxibit....I is green

with envy!!!

Teddi

[Guest guest]

Vicki wrote:

<snip>I promised my daughter that I would start to travel (if

possible)... I'm

currently setting my sights to go to Australia next summer but as we all

know... I'm not getting my hopes up too soon.

<snip>

Remember I told you to start small and work

up to Australia......Oklahoma is just right for

a trial run.....HINT

I am going to stop reading your posts until

after I eat......all your talk of food and put

at least 10lb on me.......lol

I'm getting serious about my trip now....have

started packing my beads....gotta have

something to do in the evening whle the son

is at work......maybe get some of my UFO's

(unfinished) projects done. If anyone is

interested in what I have been doing..check

out my photopoint album under beads....

also check out pets as the furballs have

some new pics up

http://albums.photopoint.com/j/AlbumList?u=59511

Y'all were talking about grocery shopping &

laundery......like Vicki I just dump it all in at

once.....and for shopping...if they don't have

an electric cart in the store they don't get my

business.....makes all the difference in the

world!!!

Teddi-dm

[Guest guest]

Hi ... I could have never gotten through all the things that have

happened during my lifetime without my animals. They don't see you have

no makeup on, or your hair is a mess, or you just don't feel like

cleaning house...there always happen, always love you, and expect

nothing in return except your love and FOOD. They have been a blessing

for me... I've been an animal lover since birth so God knew what he was

doing when he gave me my first dog to care for....

I had to check back at my blood work up and everytime they also checked

my aldolase level.... so I'm sure when they check your CPK....and Sed

rate they also check the aldolase at the same time.

You should ask your doctor to mail you the copies of your labs....or ask

for the copy of the whole file... It's very interesting to see how

everything fluctuates....

Vicki-PM

[Guest guest]

Hi Miss Teddi... and how the heck are you today....?

You know I've never been one to slide into anything.... I jump in with

both feet first. So the trip to Australia is going to be like that.

From here on out I'm on a tight budget.....Ha, as if I wasn't

before...SSI doesn't pay you very much to begin with. I'm lucky in that

I don't have to pay for a place to stay. But, spoiling my grandchildren

is on the top of my list....after all I get to leave and go home

afterwards...lol

I wish I could eat bread and water from here on out....LOL...but I don't

think that will happen.....do you?

I envy you sooooo much in going to Oregon... I love Oregon so much...

So Teddi....what did you eat?

Vicki-pm

[Guest guest]

Hi ...It's a good thing you tackled that office and found the

money. I bet you hubby was thrilled to death. As for the Celebrex,

nope I haven't had any edema at all. I get checked each month for any

swelling in my feet and ankles and my hands but I'm ok. I also take it

on a regular bases....one in the morning and one at night instead of

just when I need it.

I also hope everyone is having a nice long rest. Here I thought Teddi

was leaving on vacation tomorrow and I found out that she left last

Tuesday.... her daughter said she's having a ball.

Take care,

Vicki-pm

[Guest guest]

... I guess I read her email wrong or maybe I just lost track of

time. I emailed her since she was on no mail and her daughter wrote

back with the news... LOL I'm going to miss my own funeral....lol

I take it you haven't been diagnosed with arthritis yet? I have Osteo

and I can tell you that at times it's hard to tell which is worse. I

still say you need to find a good Rheumy... (which is not an easy thing

as you well know) to watch your progress.

I was watching the MDA telethon and wondering why Myositis is never on

there. Probably because there are to few of us.

Vicki-pm

[Guest guest]

Saint ,

as my darling husband looked over my shoulder to read some correspondence

from a breeders support group that I sponsor; he suggested starting his own

support group for HUSBANDS of dog breeders! He (jokingly I hope) intends to

name it Victims of Dog Breeders to provide comfort and support to all the

displaced husbands and irritated neighbors and anyone else who has to live

with a house full of dogs! I do HOPE he's kidding.....

Re: (unknown)

>

> Living with me - YES.......Sleeping in our room with all the babies - NOT

A

> CHANCE !!!! He's downstairs with the human children until further notice.

> And I cant say I blame him !!!!! It's like a circus act in my room with

all

> these animals !!!!

>

> Signed,

> Saint

>

> You Can Never Have Peace.......

> Until You Have All The Pieces

>

>

>

>

>

[Guest guest]

Tell him that my hubby would be more than happy to assist him in his efforts.

I think he has given up on me and my rescue efforts. Last night he was

calling me Noah !!!

You Can Never Have Peace.......

Until You Have All The Pieces

[Guest guest]

Vicki

Are you sure we arent related !!! This sounds like me !!!!!!!

" May the last sound you hear tonight be a purrrrrrrrr "

>^..^<

[Guest guest]

Hi ... well at least he has a sense of humor about the whole

thing. I can however relate to what your husband is talking about. I

have always been wild about helping out animals in need.....going so far

as to driving to the slaughter houses to rescue horses and foals about

to be killed for meat that goes to France. I think I was plugged into

every rescue agency in Calif..... dogs, cats, horses, pony's, ducks,

goats, pigs, cows..... if it had 4 legs... it somehow ended up in my

yard...... I have always felt it was my duty here on earth.

So tell your hubby it could be a lot worse, you could have animals

outside as well.

Vicki-pm

[Guest guest]

,

If you are having swelling or fluid from Vioxx or Celebrex, stop taking it

immediately and call your doctor. Both these medications can cause kidney

problems and lung problems that can cause swelling. It needs to be checked

and don't let them tell you otherwise. Some doctors do not acknowledge this

to be a significant problem because they would rather prescribe a these

drugs because they are not narcotics, but sometimes they can cause serious

side effects.

Gentle hugs,

Fern

[Guest guest]

Vicki,

They did do one segment on myositis late Saturday night. I saw it. They

were talking about the research being done in this area and how they might

actually be closer to finding treatments for us because it will not require

gene therapy.

Gentle hugs,

Fern

[Guest guest]

Fern, Of all times to miss something. I waited and waited for something

to be said about it. I must of fallen a sleep.

Dang.... It would be nice to think they are getting closer. Seems to me

it would also help some of these other diseases.

Thanks for letting me know.

Vicki

[Guest guest]

Remember, for those of you who were on this site last

year, the local MDA did a spot for the telethon about

. They aired it a couple of times. They wanted

to show a success story and we jumped at the chance to

have a few more people learn about Myositis diseases.

I have given many volunteer hours to the MDA but they

do very little in the area of Myositis's. They spend

most of their money on Duchenne's and Beckers MD

research. was initially diagnosed with

Duchenne's. It is a fatal, horrible disease that

gives boys a life span of about 16 - 20 years. As

was already having difficulty walking, and he

wasn't even 3 yet, we didn't know how much time with

him we had left. 3 1/2 long weeks after his intial

Dx, they did a muscle biopsy and changed his Dx to

JDMS. I know that every family that gets a Duchenne's

Dx prays for the phone call that we received that said

the doctors had made a mistake and that our son was

going to live. There are no words to discribe what

receiving that phone call was like. We feel anything

we can do to help the MDA so that all the other

families of boys with MD will the same happy outcome

as is worth doing. Because sees a

Rheumotologist and not a Neurologist, he doesn't

qualify for any benefits through the MDA. He has to

see a Neuro 2 times a year to be active in the MDA

files. They don't do anything for him. Just tell me

to come back in 6 months. I often wonder where all

that MDA $ goes! I believe the vast majority of it

goes to research. It seems to me, just my little

opinion, that they really don't cover a lot as far as

wheelchairs, etc. go. They only pay so much per

calendar year etc... I was under the impression,

before we entered the medical arena, that they

actually gave wheelchairs to those who were in need.

Not that simple. We do volunteer work and

appears at functions to help raise $ for research for

the other children not as lucky as he is. We also

take every chance we get to educated people about the

Myositis diseases. The MDA was very supportive of us

when was first Dx with MD but they stopped

calling when we learned he had JDMS. We were still a

family in need of support and information. I watch

the telethon with mixed feelings. I am not a fan of

Jerry . MDA is doing great things but not to the

degree that America is lead to believe. Well, I will

get off my soap box before I fall off. Hope I didn't

offend anyone.

's first day of preschool was a success. When I

picked him up, his face was flaming red and he was

very tired.

Happy Tuesday to all!

Cari and - JDMS

--- Starflower wrote:

> Vicki,

>

> They did do one segment on myositis late Saturday

> night. I saw it. They

> were talking about the research being done in this

> area and how they might

> actually be closer to finding treatments for us

> because it will not require

> gene therapy.

>

> Gentle hugs,

> Fern

>

>

__________________________________________________

[Guest guest]

Cari.... you certainly didn't offend me at all. I am another one who is

not a fan of Jerry at all. I have had the pleasure of meeting

this individual when I was very young and still living in Las Vegas. My

dad at the time was a theatrical agent so all of his kids could go back

stage and watch the shows and meet some of the people. This man was so

rude, arrogant and talk to people like they were trash. He is still the

same man today but puts on a very good act. At the time, Jerry

was saying he wasn't being paid a dime for his services he just wanted

to help out the kids and the MDA. Rodger Hedgecock in San Diego, (has

his own radio show) who loves to do investigative work on individuals

donating ones time for a cause, checked into Jerry and was shocked

to find that a very large portion of the money that is made goes to him.

It now goes into a corporation but tracing that back is still owned by

Jerry . I donate to the MDA but it is directly to them and not

through the telethon. I watched him cry on stage last night and

couldn't help thinking it was the same act as he puts on in Vegas. This

man has a super large ego and has found his money making nitch .... then

labels it " Jerry's Kids " .... Wouldn't it be wonderful if all the

companies who donated would just send there money into the MDA all year

long. Then they really would get the full amount. Ok, now it's my turn

to say ... I hope I didn't offend anyone for spouting off like

that...but in my book he's like a leech.

Vicki

[Guest guest]

Nope, didn't offend me because I get the same impression about

too. I loved him w/ in the early years, but after they split, it

seems like became so full of himself. I started watching the Telethon

this year, and couldn't stand seeing him act like a primo donna....[is that

the equivalent male, to female prima donna??, LOL ....] I agree he was

rude, arrogant, and acted like he could care less about what he was doing.

No wonder you don't see him in any movies anymore if he's getting part of

the pledge monies.

I'm curious, does anyone know why he started Jerry's Kids,.....did he have a

personal interest in it because of a family member, or friend w/MD?

The lack of resources, and public coverage about Myositis reminds me of

whats happening with the Transverse Myelitis people too. They are connected

to MS, but are not recognized in the literature, or part of the MS drives.

It's like they are out on the fringe so there isn't much research monies

going to their illness. Very frustrating.....

Well, that's my 2 cents,.... :-)

Hugs to all,

Jax

anzavic@... wrote:

>

> Cari.... you certainly didn't offend me at all. I am another one who is

> not a fan of Jerry at all. I have had the pleasure of meeting

> this individual when I was very young and still living in Las Vegas. My

> dad at the time was a theatrical agent so all of his kids could go back

> stage and watch the shows and meet some of the people. This man was so

> rude, arrogant and talk to people like they were trash. He is still the

> same man today but puts on a very good act. At the time, Jerry

> was saying he wasn't being paid a dime for his services he just wanted

> to help out the kids and the MDA. Rodger Hedgecock in San Diego, (has

> his own radio show) who loves to do investigative work on individuals

> donating ones time for a cause, checked into Jerry and was shocked

> to find that a very large portion of the money that is made goes to him.

> It now goes into a corporation but tracing that back is still owned by

> Jerry . I donate to the MDA but it is directly to them and not

> through the telethon. I watched him cry on stage last night and

> couldn't help thinking it was the same act as he puts on in Vegas. This

> man has a super large ego and has found his money making nitch .... then

> labels it " Jerry's Kids " .... Wouldn't it be wonderful if all the

> companies who donated would just send there money into the MDA all year

> long. Then they really would get the full amount. Ok, now it's my turn

> to say ... I hope I didn't offend anyone for spouting off like

> that...but in my book he's like a leech.

>

> Vicki

[Guest guest]

> Hi,....I'm sorry they forgot about you. Seems like if they started the

> support, they should have continued if for no other reason then for good

> PR, but also because they let your family think they wanted to help you,

> mostly. Read my note to Vicki about how I feel about too. You

> didn't offend me,....I feel the same. So sad, because I use to think he

> was so talented, and funny. Not so funny anymore.

Congrats to for a successful 1st day at pre-school!! Seems like he

enjoyed himself. :-)

Smiles, Jax

> The MDA was very supportive of us

> when was first Dx with MD but they stopped

> calling when we learned he had JDMS. We were still a

> family in need of support and information. I watch

> the telethon with mixed feelings. I am not a fan of

> Jerry . MDA is doing great things but not to the

> degree that America is lead to believe. Well, I will

> get off my soap box before I fall off. Hope I didn't

> offend anyone.

> 's first day of preschool was a success. When I

> picked him up, his face was flaming red and he was

> very tired.

> Happy Tuesday to all!

> Cari and - JDMS

>

>

>

> --- Starflower wrote:

> > Vicki,

> >

> > They did do one segment on myositis late Saturday

> > night. I saw it. They

> > were talking about the research being done in this

> > area and how they might

> > actually be closer to finding treatments for us

> > because it will not require

> > gene therapy.

> >

> > Gentle hugs,

> > Fern

> >

> >

>

> __________________________________________________

>

[Guest guest]

Vicki,

I knew I didn't like that man, just didn't know why.

I have always found him to be offensive. Shame on him

for taking even a penny away from sick kids. I find

his tears hard to take also. We didn't work the

telethon this year because of my knee. I do have some

committments coming up but they directly fund the

local MDA chapter, which is out of Columbia, SC. I

don't know if I will do anymore through them. I feel

my time would be better spent on a support group for

families of children with JDMS.

Hugs,

Cari

--- anzavic@... wrote:

>

>

> Cari.... you certainly didn't offend me at all. I

> am another one who is

> not a fan of Jerry at all. I have had the

> pleasure of meeting

> this individual when I was very young and still

> living in Las Vegas. My

> dad at the time was a theatrical agent so all of his

> kids could go back

> stage and watch the shows and meet some of the

> people. This man was so

> rude, arrogant and talk to people like they were

> trash. He is still the

> same man today but puts on a very good act. At the

> time, Jerry

> was saying he wasn't being paid a dime for his

> services he just wanted

> to help out the kids and the MDA. Rodger Hedgecock

> in San Diego, (has

> his own radio show) who loves to do investigative

> work on individuals

> donating ones time for a cause, checked into Jerry

> and was shocked

> to find that a very large portion of the money that

> is made goes to him.

> It now goes into a corporation but tracing that back

> is still owned by

> Jerry . I donate to the MDA but it is directly

> to them and not

> through the telethon. I watched him cry on stage

> last night and

> couldn't help thinking it was the same act as he

> puts on in Vegas. This

> man has a super large ego and has found his money

> making nitch .... then

> labels it " Jerry's Kids " .... Wouldn't it be

> wonderful if all the

> companies who donated would just send there money

> into the MDA all year

> long. Then they really would get the full amount.

> Ok, now it's my turn

> to say ... I hope I didn't offend anyone for

> spouting off like

> that...but in my book he's like a leech.

>

> Vicki

>

>

__________________________________________________