Blue

[Guest guest]

I know exactly what you mean! It is hard when you

KNOW something is wrong, but no one can find out what

it is. Take care! Love, squeek (At last we know

something about you....you have a pink nose!)

--- bluewhite97071 wrote:

> Visiting this site was well worth the effort.

>

> Being sick and looking well is sometimes hard.

>

> After 7+ years with a dx of Fibro, Would I " welcome "

> a dx of RP?

> Certainly NO! But I could almost see myself:

> holding up my

> aching head with pride; sticking my pink nose in the

> air; and

> telling the world---I told you so!

>

> blue

>

>

=====

__________________________________________________

[Guest guest]

Sharon King and others. I have already posted this message on

to another group but think you don't 'cause you're all so nosey!

Remember, I told you I'm shy? RIGHT!

.................................................................................\

..................................

Some of you asked for this info but I didn't plan to go into it. I

have no positive diagnosis of RP yet. However, I feel comfortable

letting you know me a bit better.

Then, for now... my name is just blue, `cause I'm blue, sad, and

all that. Maybe you can tell by now I AM, however, certainly NOT

bashful. But I am completely frustrated and looking for some

validation for the way I feel.

I have been sick with " THIS " since 1995. Dx of IBS, Fibro,

Arthritis, some sort of Autoimmune... whatever! Won't go into the

aches and pain that go with all of these. Tested negative for

Rheumatoid factor, ANA, ACE, and ANCA.

Have been Hypertensive since 26. Have had...sand-like Kidney

stones, Endo, Pericarditis, Bronchitis many times, Allergic

reactions to meds, Laryngitis several times a year. Etc........

But, in the last 2+ years things have changed. My pain is

different. More like electric shocks, cramping in my legs.

Weakness and ache in my arms and pressure first behind my

left ear. (now in both ears.)They only get red and hot when I

sleep on them.

My eye problems started with a " optical migraine. " I was in a

brightly lit grocery store and I couldn't see the labels. Like there

were shadows on things. Then I couldn't see much at all. It

lasted less than an hour and happened only twice. After that I

had a summer of dizziness and " optical apparitions " (my doc

called it that) I didn't exactly " ...see dead people! " But things

close to my face appeared like " ghost " images on TV...lines and

shadows around things, especially stuff that moved quickly in

front of my eyes. This happened only each morning, in bright

light. I was dx with low pressure Glaucoma in my left eye. (now

both eyes.) Optic nerve damage, not much pain though but dry

eye and redness. I have had a " twitch that comes-and-goes in

the left eye lid for several years,

My nose has been: running or " crusty " green (big time!) My nose

seems to be GROWING ...no lie!!! (get it?) One doc sees a sepal

perforation, one doesn't (?) I cough a lot a night. Sleeping siting

up helps. I cough when I bend over and have trouble swallowing

(pills especially.) I can see a yellow lesion in the back of my

mouth. There are " dents " in both cheeks! (?I have an idea my

parotid glands have been removed by aliens? ha! ha!)

The SKIN THING...

Started with a few " spider " veins on my arms. then a light spot on

my middle finger, left hand. Now much larger pink/white scar-like

marks on left hand and arm and and a few smaller spots on the

other arm legs and neck, chest etc. I am a very fair skinned

Caucasian with dark hair and dark blue eyes. I stay out of the

sun. It's not hard, I live in western Oregon! The surface of the

skin doesn't hurt, but it hurts deep down (muscle? bone?)

" Puffiness " (edema?) hands, arms, legs feet. " ...and the beat

goes on. "

Now you know why I didn't go into it before. I joke a lot about this

stuff, but I crave support and understanding from those who

know it could be dead serious stuff. I'm less and less willing to

" ...wait and see! "

THAT'S ALL FOLKS (not!)... TO BE CONTINUED...

blue

[Guest guest]

LOL I love you Blue! You make my day! I think we would get along fine. I like your description of your self. I have been told a little dab will do you, about myself! I can't help it...just take life as it comes and have to have fun doing it even if it isn't a lot of fun!

Yes this is the one and only Glenda of the group. I live in Springfield and Squeek lives in Eugene. We have gotten to meet Dagny once since we all joined the group. Of course we all didn't join at the same time but were able to have a get together last summer. Gish has it been that long????

Maybe you can join us when we get together in Salem. Don't have to but if you would like that would be fun too. What is the saying the more the merrier! ) Sounds like you are as shy as I am!LOL

I know what you mean about the insurance thing. It is the pits. It is like they control you no matter what you do anymore. I was just trying to give you options so maybe if you do get a dx your dr. might refer you.

Take care!

Lots of love

Glenda(eyeoreluv)

GlendaThere is more than one Glenda in the group, right? (Can't find the e-mail Re: to Glenda I wrote a few days ago) You're from Oregon too I think.I live close to Portland but closer to Salem. We moved to Woodburn from Portland 2 years ago last May.

[Guest guest]

--- bluewhite97071 wrote:

> Or-e-gen Folks,

>

> Had a good day Tuesday (in Salem, Or-e-gen) at the

> " shrinkS. "

> Yes, I have two! and probably need more! I guess

> maybe I have a

> split personality??? cRaP (I love that) will do that

> to you and I

> don't even have a positive dx yet! Anyway, we

> laughed... we cried

> .. we upped my Zoloft by 50%!

>

> Then my husband and I ate our faces off at OLD

> COUNTRY

> BUFFET (in Salem, Or-e-gen) It's on Lancaster and

> Center NE.

> Should you ever want to do the same!!! It is the

> place, I call it food

> heaven and/or food hell. I'm not sure??? Food

> everywhere, lots

> of fat people, old people and " gimps " (*) so you

> feel at home. It's

> a very good excuse to go see Salem!

>

> Keep it secret from the WORLD RPs. Don't let anyone

> know...

>

> blue, the Or-e-gen WHISPERER

>

> (*) words used lovingly w/respect.

>

Well, Blue, since you know where food heaven is maybe

you can direct myself, Glenda, and Dagny there....of

course you too! Glad you had such a great time with

your shrinks! Have a great weekend. Love, squeek

=====

__________________________________________________

[Guest guest]

> > Keep it secret from the WORLD RPs. Don't let anyone

> > know...

> >

> > blue, the Or-e-gen WHISPERER

> >

............................................

> Well, Blue, since you know where food heaven is maybe

> you can direct myself, Glenda, and Dagny there....of

> course you too! Glad you had such a great time with

> your shrinks! Have a great weekend. Love, squeek

............................................

Glenda has an e-mail from blue... for you two too

blue who?

[Guest guest]

>>

> I was SO fat BEFORE Zoloft, that I begged to take

> it so I would

> have an excuse! and YES YES YES YES YES YES YES YES

> YES!

> I've been caught with my pants

> down!!!!!!!!

>

> blue, to you

>

> blue

>

Now here's an interesting visual...a fat lady with her

pants down!!! For shame! HA!!! Love, squeek

=====

__________________________________________________

[Guest guest]

wrote:

" Oh, no, this poor girl has so many medical problems. "

No , I don't have all that many medical problems. What I

have is a single puzzle with plenty of putrid piles of pieces, pain,

pills and physician procrastinations.

With each new symptom, I feel as if I take one step forward and

two steps back! This is the diagnosis dance. When the signs

aren't matched up, there's no diagnosis, no real treatment and

no progress. You're in limbo. " ... how low can you go?''

The diagnosis dance reminds of an old song called:

Ball in the Jack

First you put your two knees close up tight.

You swing `em to the left and you swing `em to the right.

You step around the floor kind of nice and light.

Then you _ around and _ around with all your might!

You spread your love'n arms way out in space.

Then you do the eagle rock with style and grace.

Put your left foot out and bring it back.

That's what I call, ball in the jack!

All that " Jack'n " around ain't no fun alone! If I'm to " partner " with

RP, I will embrace it! Then we'll see who's balls get jacked!

When you know what it is ... maybe you can start to kick it's ass!!!

I've heard that often depression is anger turned inward. When I

get a chance, I let it out, big time! Enough of my dark side!

, I want you to know I look forward to your posts too. It's

wonderful to have the opportunity to read all the messages on

the board. Each one is important. I'm learning how you guys

manage with the cRaP diagnosis cope with side effects of meds

and all. I like the way you encourage each other to stand up for

your rights, refusing certain procedures and insisting on others,

etc. I'm thankful for all the information and help I have

received. *

I like to write to this group and feel appreciated already. Thanks

for all the comments. I'm glad to add a smile to someone's day.

yours true, blue

* and if it turns out that I don't have RP and get the boot from the

group. the ass kicking will resume! : )

[Guest guest]

--- bluewhite97071 wrote:

>>>

> >

> >

>

> I like to write to this group and feel appreciated

> already. Thanks

> for all the comments. I'm glad to add a smile to

> someone's day.

>

> yours true, blue

>

> * and if it turns out that I don't have RP and get

> the boot from the

> group. the ass kicking will resume! : )

>

>

Oh, no, you don't get out that easily! Even if you

don't have RP you are still part of the group!!!! Also

this group appreciates you!! Love Liz

__________________________________________________

[Guest guest]

What if I have bad germs and stuff like a " normal? "

What if I have to be a different kind of " gimp? "

Will you still like me if my nose doesn't run?!!!!!!!!!!!!!!

boo hoo! blue

[Guest guest]

Blue

Well today its time to see sunshine and roses, smile a little smile, stop thinking the grass is greener on the otherside(been to dry for green grass anyway), look on the brite side, don't worry, be happy, there's a lite at the end of the tunnel. Hummmmmmmmmmmmm lets see what other nonsese can I write, well now I know I'm tired, took me 3 try's to write, write,right, wright, see what i mean.

Smile someone in WV cares so don't be bashful or blue. There is life after cRaP

love ya

dawn

bluewhite97071 wrote:

--- In Rpolychondritis@y..., Dawn one of the things she wrote was:'... Blue please keep up the post, i absolutely love to hear from you, its always interesting.dawnThanks for including me in your post. It is hard to keep up. There are a lot of posts that have to go w/o a immediate reply these days. I enjoy writing although, like many of you, I don't always feel like it Once I get going I sometime get carried away. Occasionally, something good comes out. Posting to the boards is so rewarding because of the feed back. Thanks again.today I'm extra, blue

[Guest guest]

> Talked to my sister, she was having a rough day so we both

cried on

> the phone and resolved that tomorrow would be a better day.

>

> You take care and I hope tomorrow is better for you too.

> Love, Marilyn

I cry with you

hope it's better for you too!

blue

[Guest guest]

> only got dog food, but he had to have Monterey Jack Cheese

about 4 times every day in order to get his pills down. Maybe

that's why he farted so bad.

Marilyn

I think CHEESE will do it too!

I was born ('n aged ) in Wisconsin.

I was a " Cheese Head " before...

Bret Farb

Monday Night Football

The Superbowl and before time

Is this true? blue

P.S. RP sucks! (to stay on subject)

[Guest guest]

Hi Blue;

Thanks for the poem. It really cheered me up. As for your other poems, you are a real riot. I really enjoyed them. Keep up the good work, you keep us laughing.

Luv ya,

Susiecue

[Guest guest]

Got me!

and so Quick!

Who writes your " shtick " ?

PS looked it up too!

want to spell it right for you!

blue

________________________________________________

shtick

PRONUNCIATION: AUDIO: shtk     KEY

VARIANT FORMS: also schtick shtik

NOUN: Slang 1. A characteristic attribute, talent, or trait that is

helpful in securing recognition or attention: waiters in tropical

attire are part of the restaurant's shtick.

2. An entertainment routine or gimmick.

ETYMOLOGY: Yiddish shtik, piece, routine, from Middle High

German stücke, piece, from Old High German stukki, crust,

fragment.

[Guest guest]

" Ability will never catch up with the demand for it. "

--Malcolm S. Forbes

" Dem that writes, do. Dem that don't quotes! "

--blue 09/16/02

[Guest guest]

Blue,

Good to see you posting again. I was wondering if you had gotten sick on us. Was going to start the worry thing again!LOL

Take care

Lots of love

Glenda

[Guest guest]

In a message dated 9/22/02 6:27:15 PM Pacific Daylight Time,

kwhite@... writes:

<<

He knows my heart has never been great

Says he's interested in the heart involvment too!

I would like to get the informatiom you have?

That's the reason that I am rhyming to you!

>>

Blue, do you need info on the heart? If you do, I will get the info that I

sent my cardiologist. I'm in the process of writing to the surgeon who did

my surgery to see if he will write a paper on what he actually saw when he

had my heart in his hands. LOL He said it was not normal damage to a valve,

it was DEFINATELY destroyed by RP. Let me know if you need anything.

hugs

[Guest guest]

> Blue,

> Good to see you posting again. I was wondering if you had

gotten sick on us. Was going to start the worry thing again!LOL

> Take care

> Lots of love

> Glenda

Worry all you want! Arn't we all sick?

So I'm sick! What are you guys going to do about it?

Pick me up and take me to lunch?

blue

P.S.

If comes to lunch in Or-e-gen she get's to order the blue

plate special SLUG SANDWICH! She goes back on the plane!

And she can enjoy her lunch on the way! Get Well! Then fly, eat,

laugh, wet your pants! anything shewants. I'm right!

Have a PB+J in front of the " putter " and call it LUNCH!

[Guest guest]

<Blue, do you need info on the heart? If you do, I will get the info

that I sent my cardiologist. I'm in the process of writing to the

surgeon who did my surgery to see if he will write a paper on

what he actually saw when he had my heart in his hands. LOL

He said it was not normal damage to a valve, t was DEFINATELY

destroyed by RP. Let me know if you need anything.

> hugs

> >

My Reply................

Have followed your posts for a time now.(I bet you're waiting for

a rhyme now?) I'll take it easy on my self and put the rhyming on

the shelf! Think I need a rest! That's what I do best!

Back to your heart " thing, " May I ask? What actually went wrong

and your symptoms/signs etc..

I'm concerned because I've had troubles all my life with heart

" something " that never gets treated, comes back in another form

or ? You know the story. Always trouble with fevers,infections;

High Bp since I was 26! Paricarditis in '77; Cardiogram always

messed up; Murmur comes and goes,

Been on Beta Blockers for several years now and it does control

my BP! Great but hard to take (slows heart down = heart doesn't

work so hard = body doesn't work so well!)

I said all that to say Yes! Thank You!

I say all the time it's easier to rhyme!

blue

[Guest guest]

Lu use to do it all the time.

Now she says she can't think of a single rhyme?

See, it's easier than it seems!

Soon she'll be rhyming in her dreams!

©blue/02

...............................................................

Oh Blue you are so good at this! lol I just love it.

Lu

[Guest guest]

> GEE Blue where did you learn to rhyme like that? I use to do

that all the time, now I can't think of a single rhyme. lol

> Lu

Lu use to do it all the time.

Now she says she can't think of a single rhyme?

See, it's easier than it seems!

Soon she'll be rhyming in her dreams!

©blue/02

...............................................................

blue's husband says to tell you she learned it in state prison!

It was rhyme or die!

blue says that rhyming is just in her jeans(genes)

[Guest guest]

Blue, you know you have us worried.. We haven't heard much from you. I hope all is well and you know we want updates... Not just on your double chins. We all have those. But I guess you donated yours first so you win. LOL

Know I'm thinking of you often. I'm still working on my rhyming. lOL Not doing too well.

hugs

[Guest guest]

Thanks for the reply!

You'll hear from me by-and-by!

Been working on some stuff!

Just can not get enough!

I write and write and write!

I write most all the night!

And then I do some more!

And then I'm out the door!

©blue/02

I do read most of the posts everyday. I had to go off the daily

digest because it messes up my mail box when I get large

digests, clogged with repeated copies of old digests.

Perhaps I mentioned before that I'm a MAC USER! We think

different! I spend a lot of time on my iMac and I try to keep a

" clean ship " so-to-speak.

Also, I have been working on some web sites. One is a group for

my kids and granddads. Another is for blue's stuff. Did I mention

that I have been working freelance since 1965? White

Productions. That's me!

There are few careers where you can make a living in your PJs!

blue

[Guest guest]

> Blue, you have my kind of job.!! I LOVE PJ's ... Keep up the

good work. Do you have site you can share with us? Would

love to see it.

>

............................................................................=

.........

JOB?

WORK?

Never!

I earn my way by being cleaver!

I went to school

It did no good!

I don't do stuff

" the way you should! "

I'm not a " Beat "

I'm not a " Hippy "

If you ask me...

I'm just dippy!

I sit back

.... " do my thing "

Maybe? I'll earn my chance

To catch " the ring! "

©blue/02

.........................................................................

blue's site = SOON!

Not promoting here, nor will I.

White_Productions group, WhiteHouseHome =

restricted to family members by invitation.

Right now my son Larry is running a poll on the group: " Is our

MOM really insane? " So you see, it's not for public viewing!

White_Productions home site =

under construction as we speak.