Heidi

[Guest guest]

Heidi, thanks for the update on Sandy. If you talk to her give her my love

and let her know that she and are in my thoughts and prayers.

COngratulations on your new Boat!!! Remember that Don has to take me fishing

when I get back there.

hugs

[Guest guest]

Hi Heidi, I saw a bumper sticker the other day and

thought of you when you are the " mad German " . It

said, " what's another name for a grumpy German? A

sour-kraut " . I had to laugh at that one. Hope you

and Don have a wonderful time on your trip, and that

you both stay well. Love, squeek

--- Heidi Main wrote:

> Gruest Euch alle !!!

> Naw wie geht es Euch den ??? Opps LOL

> wrong language huh.Ja just practicing my

> German on you all. LOL We finally got our tickets.

> We are leaving July the 15 and returning August the

> 12. Hope and Pray this trip will go ok. And I don't

> start or have to finish WW 3. LOL you all know how

> it can be with your out laws. LOL But that's Ok I

> got BIG feet and the all have a big rear end so the

> connection will be fine there,LOL .Now to you all.

> Just because I be gone for a while does NOT mean you

> can forget to take your Medicine and Vitamins you

> all hear me ???

> Did you all call your Drs yet to get your Tummy

> Protecting Meds ??? No and just why not ??? I want

> you all well when I get back.

> Please do it OK I love you all and care about you

> guys.

> Ja we be getting together also with Werner + Gabi

> and Doris and her Husband . Sorry don't know her

> hubby's name yet. Doris has RP also but does not

> speak English or write it. Wish I could meet Jean

> too. But it is a long way to

> Switzerland. I think to Muenchen it is 2 hours from

> where we be and don't know how far it is from there

> to Jean. Well I guess I better shut up for now got

> to go to BIG town Tulsa and Buy Mr. Ornery some

> Britches. Cant let him go naked over there now can I

> . LOL Now that he loosing his Prednison weight none

> of his dress pants fit him any more. Wishing you all

> a great day till later love you all.

> Mrs. Noisy the mean one. LOL

>

>

>

>

>

>

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[Guest guest]

You can keep the booze, but can you bring some rain to

Oregon? Our poor state is burning up and it has been

soooo hot here. Glenda and I are not happy about

that! What a trip you had! Glad you are both home

safe and sound and that you did your part to stimulate

Germany's economy. Love, squeek

--- Heidi Main wrote:

> Hi Again, well I promised I would write about our

> trip

> to Germany. So here it goes. LOL As you all can

> remember before we left we had nothing but rain here

> in Oklahoma. Well I be darn it followed us to

> Germany.

> We had 2 sunny days the whole time we where there.

> Thanks to Werner he bought the sun with him from

> fort for the afternoon. But you know I think he

> also took it back with him. LOL After the all left

> it went back to rain. LOL Now it has followed us

> back home.

> I was told we had great weather here till I got back

> home. LOL My Sister meet us at the Airport in

> Chicago on our return Flight and she had talked to

> the out laws in Germany and was told how much it

> rained when we got there. Well she said I need to

> stay a little while in Chicago because the need some

> rain.Well I be darn we did stay in Chicago half a

> night. We where supposed to fly out of there at 7:11

> PM but some one put the screws to us BIG time. LOL

> The Airport change some rules that day. So we ended

> up sitting on the runway for 6 1/2 Hours before take

> off. After 2 hours sitting in the plane the did

> offer us a cup of WATER !!!!! Then again at hour # 5

> we got another cup of water. Well when we where # 3

> in take off ,we had to go back to the gate because

> it ran out off fuel !!!!! So after getting more Fuel

> we had to go back to the end of the line. Well this

> time we made it to # 7 in take off time. And we had

> a hell off a thunderstorm and could NOT take off.

> The shut down the Airport for a while. Gee we

> finally got to take off after 1:45 AM !!!! After we

> got going the served us a cup of COFFEE !!!! just

> what we needed to go to sleep when we get home. !!!!

> NOT !!! I was bright eye and Bushy tail let me tell

> you. My poor Daughter picked us up at 3:30 AM. Bless

> her heart she kept calling the Airport to see if we

> where going to make it. Well by the Time we did get

> Home I was so wired I could NOT go to sleep. Even

> thru I had been up since Sunday Night.So I unpacked

> and got started on the laundry. LOL Mr. Ornery did

> do better then I did. But hey that is a man for you.

> LOL So last Night I knocked my self out with 2

> Tylenol PM. I woke up at 2 am and was wondering

> where I was and where was the bathroom. LOL Yup

> every 3 days we changed House till the last week of

> our stay. Now to our Visit with the Out laws. LOL

> Mr. Ornery sure did enjoy his time over there. He

> even had a Bier everyday !!!!! The all treated him

> like he was a KING !!! Gee the all waited on him

> hand and foot !!!

> What every he wanted he got !!! Spoiled brat right

> LOL

> We even went one day to Holland. I was not impressed

> with the City. kind of dirty .From Emden we flow

> down to Dresden. That is where I was Born.Dang we

> had a Little bitty of a Plane. Dresden is in a

> Valley so that little Plane sure did some rocking

> coming down. LOL There

> we got to go Meissen and watch them make the famous

> Porzalon.Mr. Ornery bought me a BIG Vase there.

> Don't ask how much it cost. LOL

> From there we went to " Erzgebirge " That is where

> the make all the Nut Crackers and wood

> Figurines.Yup, we now know how the are made. Yes I

> did improve the economy there LOL Then from there we

> made it to Nuernberg. Showed Don the Burg and all

> the Places where the held the Nazi trails.Ja the

> rain did NOT stop us. LOL In Nuernberg I bought a

> lot of CD " S. Now I have great German Music again.

> Even Don likes that. He fell in love with Tiroller

> Music. Gee I have to tell you all I think I started

> a new Fashion over there. When I packed our

> suitcases I pack me a pair of Tennis shoes. Well the

> only thing the 2 shoes had in common was the where

> the same color. LOL I had pack to different shoes

> !!! Now can you believe this I wore them to town

> like that ,I did not notice that the did NOT match

> till I got back home that evening. LOL Well what can

> I say except you all know I am a Blond. LOL On the

> way back to good old USA we did Not get checked at

> Costume. !!! Weeeee

> was I sweating this. LOL I had 4 BIG bottles of Buzz

> in my carry on and a whole lot off Bier in all the

> suit cases. LOL The Hard stuff where all gifts to

> us. LOL Heck we don't even drink the stuff. LOL Hey

> you all want to have a Party ?? LOL I also did NOT

> have to buy any Chocolate !!! Ended up with so much

> as gifts I could not buy any more. LOL We went over

> there with 2

> very Large suitcases and came back with 3 suitcases

> and 2 Large carry on Bags. !!!! Oh well all I can

> say I did improve the economy over there in every

> other way. LOL Over all it was a very nice trip. But

> Lord knows I am happy to be back home. Well I guess

> I better hush

> and see how the King Ornery is doing. LOL I do want

> to envied you all over for a drink OK. Got plenty of

> that stuff. LOL Love you all and thank you for the

> warm Willkommen back. You Guys are the best of

> Friends .

>

> Love from Oklahoma

> Heidi

>

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[Guest guest]

Happy Birthday to you,

Happy Birthday to you,

Happy Birthday dear, sweet Heidi.

Happy Birthday to you!

And welcome back!!

Love Ya Much,

Sandy

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sorry to hear this, Heidi. I'll be praying and please

let us know what you find out. Love, squeek

--- Heidi Main wrote:

> Hi There !!!

> I am not a happy camper today !!! Mr.

> Ornery is having a Problem once again.

> His Neck and Shoulders are swollen once more.He

> looks like he has 2 Ostrich eggs

> around his Neck and shoulders.

> He done that once before and ER

> Dr. did not know what it was. The Only thing the ER

> Dr. said back then was mmm it is still swelling and

> I don't know why. So today we went to our regular

> Dr. and he is ordering a

> MRI. He thinks it is a fluid Collection.It has

> something to do with all your Lymph notes.

> Gee that Man is giving me some more gray hairs. LOL

> I hope and pray this time the get to the Bottom of

> this problem.So for now all we can do is hurry up

> and wait.Has anyone else ever had this Problem ????

> Till later be good and Pain free OK.

> Love

> Heidi

>

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[Guest guest]

Heidi

Go get em heidi.

dawn

Heidi Main wrote:

Ok I normally don't vent here because I think you all got enough Problems with out hearing my problems. But If I don't do it today I will explode !!!!! DAM DRS. !!!!!!!!!!!!!!

Ok I took Don for his MRI today. Well it took over 2 Hours. So of course that made him late with his noon time meds. Does as,,,,,,, took the MRI with injection of dye and told him mmmmm we see something we think you need a Ultra sound to check it out some more. Well shit I was waiting and waiting. I kept asking them what is the problem since he was back there already 1 hour ?? All the said he be out in 10 min. Well shit another 45 min later still no Don. That is when I ask once more only this time not nice like. The said " O I am sorry did the tech not tell you the having to do a Ultra sound because there is something on the MRI!!!! He finally came out after 2 hours and the told him Ok you can go now you are ok.

Well shit if he is ok why the hell is he still swollen ??? Right now I waiting on our Dr. to call me. Ja good luck on that !!!! I want them to find out why ??? Cant thrust no one can you ? Wish I knew where to go from here.

All this brings back BAD memories for when he first came down with RP. Ja he had swollen ears ready to bust open and the dam Dr. said

" Go home you are healthy as a horse " If your Ok you don't swell up like that. Gee even I know that. I am ready to start WW3 here. Gee maybe I need to have a drink. LOL Dang I wish that hard stuff would not stink or I would have one. LOL Ok I hush now,Sorry for this but I am Mad as hell.

Love you all hang in there we just have to win now and then Right ???

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Give 'em hell, Heidi! I think Don's doctor better

have some answers for you or it will be WW3. Please

let us know what you find out when he calls. Sorry

this all went so badly! Love, squeek

--- Heidi Main wrote:

> Ok I normally don't vent here because I think you

> all got enough Problems with out hearing my

> problems. But If I don't do it today I will explode

> !!!!! DAM DRS. !!!!!!!!!!!!!!

> Ok I took Don for his MRI today. Well it took over 2

> Hours. So of course that made him late with his noon

> time meds. Does as,,,,,,, took the MRI with

> injection of dye and told him mmmmm we see something

> we think you need a Ultra sound to check it out some

> more. Well shit I was waiting and waiting. I kept

> asking them what is the problem since he was back

> there already 1 hour ?? All the said he be out in 10

> min. Well shit another 45 min later still no Don.

> That is when I ask once more only this time not nice

> like. The said " O I am sorry did the tech not tell

> you the having to do a Ultra sound because there is

> something on the MRI!!!! He finally came out after 2

> hours and the told him Ok you can go now you are ok.

>

> Well shit if he is ok why the hell is he still

> swollen ??? Right now I waiting on our Dr. to call

> me. Ja good luck on that !!!! I want them to find

> out why ??? Cant thrust no one can you ? Wish I knew

> where to go from here.

> All this brings back BAD memories for when he first

> came down with RP. Ja he had swollen ears ready to

> bust open and the dam Dr. said

> " Go home you are healthy as a horse " If your Ok

> you don't swell up like that. Gee even I know that.

> I am ready to start WW3 here. Gee maybe I need to

> have a drink. LOL Dang I wish that hard stuff would

> not stink or I would have one. LOL Ok I hush

> now,Sorry for this but I am Mad as hell.

> Love you all hang in there we just have to win now

> and then Right ???

> Heidi

>

>

>

>

>

>

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>

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[Guest guest]

hI HEIDI

YOU CAN'T BE THE HILLY BILLY, I'M THE ONLY ONE HERE, AFTER ALL I DO LIVE IN WV , THE HILLBILLY STATE.

TAKE CARE

LOVE YA

DAWN

Heidi Main wrote:

Hi you all !!!!

Wow do I sound like a Hilly Billy or not. LOL

Ja trying to get my little pity mind switched back to English. Aint easy when you are a Blond . LOL

Martha I am sorry to hear about Comanche.I guess he can play now with our

Kitty. Ja we lost her 2 month ago. She was shy 2 weeks of being 18 years.

Marilyn I am so sorry about Rambo, know how you feel . We had to go thru this 2 months ago with ours. This most be a year for Cats to go.

Ja we still miss ours. But she had Cancer and we could not let her suffer.

Now to you being a Klutz well let me tell you Don said "Honey you are still the Queen of Klutz" I do a stupid thing at least once a day. LOL Right now I am nursing a Broken toe !!! LOL Ok Marilyn if you can bake Lemons Bars

Can I bake too ?? LOL My Fam. told me NO !!!! Now aren't the mean to me ??? Ja I have to wait till this week end to Bake. LOL Then the cant say anything because it is Mr. Ornery's Birthday . LOL Making him a Chocolate Cake with Tangerines and a Plum cake .LOL Ja Glenda I finally found the right Plums.LOl Kids are coming over this weekend. Because Don's Birthday falls on a workday. ( Tuesday) I got him all new Windows for the House and a new French door for our Bedroom for his Birthday LOL Hey that is better then all the tools he wants. LOL He does not have room for tools any more till he gets his workshop done. LOL The should be here in 4 weeks. Wow I am happy for his present. LOL Now I don't have to go outside any more to clean them. LOL

PLEASE do take it easy !!! You done so well so please don't mess it up. I am so proud of you Girl.

Dawn that goes for you too !!! Please take time out for your self. You are over worked Girl!!!

Sqeek good luck with your chess thingy. LOL

Sorry cant spell the meds name. LOL Hope you having lots of Fun with the grandkids.

To all her now. Do any of you need more Brochures ?? If you do please let me know I will send them to you right away. OK Got to go to the post office tomorrow anyway. Ja mailing off the Group member list. Well I better close for now so be good and pain free OK.

Remember Please take your Vitamins and Medicine ON TIME like you should so you can get this darn RP back in it's sleeping mood too.

Love and hug to all

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Aw come on Heidi, I thought you loved me, Ok how about if i make the peanut butter pie and you can watch us eat it, love ya

dawn

Heidi Main wrote:

LOl Oh No Dawn you wont be able to go for Therapy after Marilyn and I get true Baking. LOL And NO I AINT MAKING A peanut butter pie

either !!! Yucky Pfuuuy !!!

Sounds good to me, yum yum, wonder if heidi will make us a peanut butter pie. its great when its hot outside and the pie is nice and cold. I can always shop on a full tummy, gives me energy.

take care of yourself

love ya

dawn

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Heidi

I caught you those two little words, and you thought i would not find them.

Hey everyone Heidi wrote the words PEANUT BUTTER.

love you all

dawn

Heidi Main wrote:

Hi Squeek I got a ? for you . Read about your Puppy how would you like to have a Grown German Sheppard to go with it ?? LOL

Ja today I could have giving her a way and not bat a eye. LOL Can you tell I am mad at that dog ?? LOL She done something yesterday she NEVER done before. She killed a Rabbit and eat part of it !!!! Dummmmm Dog !!!!!

Then last night she got sick from it and of course today I had to shampoo the carpet. Now to your Son I am so happy he is doing great once more. See I told you not to feed him Peanut butter and he would be fine. LOL

Ok I hush and go hide again now. LOL

Love you

Heidi

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Heidi,

Hope you don't mind, but i saw your message to Chrissy. As you know, i too,

am trying to get an insulin pump, but without success.

The UK guidelines state that you have to have tried all other methods to

achieve stability, incuding multiple dose injection therapy, which i have. My

diabetes has been more unstable since i had the small remaining rim of pancreas

removed last November. I work shifts (i'm a nurse) and have irregular meal

times, when i'm at work, so i believe that a pump would be the ideal solution

for

me. Trying to convince the docs is a real problem. I'm sure it all comes down

to funding. I shall continue to fight on, until i am succesful. I'd like to

wish you well in your quest for a pump too.

Take care.

Sue (UK)

[Guest guest]

Holly,

ton may have better job opportunities for your husband than

this area does, and it's a lovely city, too. My daughter lives there

now and I lived there for ten years back in the 70's and 80's. Yes,

I have CP, too, you can read my whole, long story if you click on the

url listed beneath my name.

A shorter version would be that I was diagnosed with chronic

pancreatitis three years ago after an acute attack where they found

two pseudocysts in my pancreas. The chronic pain progressed rapidly,

requiring that I needed daily pain medication just to function. A

year and a half later I became very sick, wasting away, so to speak,

losing 30 pounds in three months and in a physical condition that

baffled my doctor. As a result of this deterioration, I suffered a

sudden diabetic ketoacidosis attack 16 months ago which left me with

insulin dependent (type 1) brittle diabetes. My pancreas had burned

out, and I woke up in the hospital with a whole new set of medical

problems to deal with.

I still have the two pseudocysts that I started my CP journey with,

and because of my own physically abnormally postioned pancreas, the

doctors are unable to drain or remove the pseudocysts by conventional

procedures that would be used with another patient with this problem.

Breakthrough pain means pain that is intense enough to " break

through " the narcotic coverage a person is already receiving. In

other words, if you took an Oxycodone, and then an hour later, the

pain became so intense that your medicine couldn't stop it, that

would be " breakthrough pain " . It's usually used in reference with

patients that are already taking long acting pain medication like a

duragesic patch (which can provide coverage up to 72 hours) or

Oxycontin, (which can last up to 12 hours), and the pain that

interrupts that coverage when the stronger, long acting medication is

still in the system.

I haven't been able to work full time at my business for the last

four years. I'm a self employed architectural draftsman, and did

have enough business to keep me active year round, but that went

south about four years ago. I began by working for a builder-

developer-realtor in ton, and then opened my own business

about fifteen years ago when we moved to this area. Unfortunately

the long spaces of time that I've been too sick to work have caused

my business to dry up, and I'm now applying for Social Security

Disability. I'm due to have a hearing before a judge within the next

few months, after an appeal was denied about six months ago.

Don't worry about not knowing what some of our lingo means, you'll

either figure it out soon enough, or don't ever hestitate to ask a

question....as they say, the only stupid question is the one that you

DON'T ask!! We have a lot of familar sayings and terms for things

that other people probably wouldn't understand, but you'll be an old

pro at this soon enough.

Are you thinking about going to Mayo in Rochester or in Florida?

I've heard of people that have gone to both places and had a lot of

their problems, questions, or unconfirmed diagnosis' solved. If you

go, hopefully you'll have the same fortune.

Do enjoy our sun....we'll have plenty more, and the heat to go with

it, before you see the last of summer in SC! We are into hurricane

season now and the worry about that makes this my least favorite time

of year on the coast.(grin)

Think good thoughts,

Heidi

Heidi H. Griffeth

http://www.pancassociation.org/anthology#Heidi.html

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on personal experience

or opinion, and should not be substituted for consultation with a

medical professional.

[Guest guest]

Well the hurricane season is just warming up. Sounds like ya'll

spend a lot of time and trouble gearing up. We dont have as much

and dont live on the water. So just your basic battening down the

hatches. It made for quite a blustery day and my yard is a huge

mess. Some felled trees but nothing more then mess.

We are very fortunate especially compared to all those folks in FL.

My goodness and so many are elderly. Breaks my heart because a

tragic loss like this is devastating to the elderly and many will

not recover.

I hope thats it for the storms for a long time but they are already

talking about Earl, and the season has barely kicked in. We went

through Hugo and I'm not eager for anymore, that certainly should be

my lifetime quota. Everyones who lived in McClellanville during

that one hurricane.

Alison starts classes next week but she is not very excited. Mainly

because she is still living at home and wanted to move out. We

simply cant afford that with my not working. She doen't have a very

good attitude about it and that has me concerned. I hope she will

feel differently when she starts her studies.

Hope the wedding plans are going well. When is the big day? Not

long I know. I hope your feeling well and the stress is not too

much for you. I'm doing ok. I have to take things really slowly or

the pain will get worse. I dont eat much but try to get enough to

keep up my strength but then I will get more pain and that butt

burning steatorrhea. It just seems to be a viscous circle.

I haven't heard anything final about the total and its getting me a

little tense, to put it mildly. I am so afraid I will get turned

down for some reason or another. I dont know what I would do if

that happened. I think I would loose it.

Take care Heidi and I will continue to look in the Post Courier for

s wedding announcement.

Love,

Chrissy