Welcome

[Guest guest]

Welcome to everyone, I'm also new! This group is wonderful!

Shandi-

My mom seems to be almost the same way - I think she is in

denial! " You'll be fine, just take 2 tylenol " Whatever mom! My

boyfriend said to me last night... " you don't have fibro - you just

need to exercise " Yeah, right! Neither one want to believe I have

illnesses and that makes it harder for me! Sunday I rotatilled (sp)

my garden, only two rows and planted onions and radishes, well now I

am paying for that big time. I feel really miserable and hurt so

bad, it's all I can do to make it through work. At least the new pain

medicine helped me sleep last night. Well, enough complaining from

me, have a great day!

> Welcome to all the new people. Hope you find all the friendship and

> answers that I know are here. This is an awesome group.

>

> Just had to vent this....my mother recently called and told me she

> decided I just needed to " snap out of it " and " force myself to do

> things " She works in a pharmacy for god's sake...I just figured she

> might take illnesses seriously. Bleh.

>

> Shandi

[Guest guest]

Welcome to everyone, I'm also new! This group is wonderful!

Shandi-

My mom seems to be almost the same way - I think she is in

denial! " You'll be fine, just take 2 tylenol " Whatever mom! My

boyfriend said to me last night... " you don't have fibro - you just

need to exercise " Yeah, right! Neither one want to believe I have

illnesses and that makes it harder for me! Sunday I rotatilled (sp)

my garden, only two rows and planted onions and radishes, well now I

am paying for that big time. I feel really miserable and hurt so

bad, it's all I can do to make it through work. At least the new pain

medicine helped me sleep last night. Well, enough complaining from

me, have a great day!

> Welcome to all the new people. Hope you find all the friendship and

> answers that I know are here. This is an awesome group.

>

> Just had to vent this....my mother recently called and told me she

> decided I just needed to " snap out of it " and " force myself to do

> things " She works in a pharmacy for god's sake...I just figured she

> might take illnesses seriously. Bleh.

>

> Shandi

[Guest guest]

Hi Dana!

Oh don't you just love the advice? If you just joined a gym or

changed your hair color, you'd cheer right up and just be infused

with so much energy! Certainly I exercize, but I do stretch and walk

so my knees don't lock up and my muscles don't get so stiff I can't

hobble out of bed. It is almost always painful and I must do far

less than normal people do.

And if you tell someone that sometimes you get so tired you can

barely open a candy bar to eat or a soda to drink? You just get

laughed at. But sometimes, that's the way it is.

Sometimes I do something, like your gardening. I clean or or

organize or something, or go out to eat. And then I pay with pain

and fatigue. And then a friend will say...well...you did it just

yesterday, aren't you better now? NO!! I just got lucky yesterday

and now I am feeling the effects of what I did!

Sometimes I get so fed up with the lame advice, especially when

you've ALREADY explained what you have. No, two tylenols will not

touch the pain. Sometimes prescriptions don't. No we cannot just lay

down and sleep whenever we want. We cannot just cheer ourselves up,

paste a phony smile on our face, and talk ourselves out of the

symptoms. They are NOT psychosomatic. I baked cookies yesterday?

Good for me, but today I might be curled up in bed with a couple of

heating pads and the blinds shut tight cause I have a migraine.

Here's hoping our families get educated!

Shandi

> > Welcome to all the new people. Hope you find all the friendship

and

> > answers that I know are here. This is an awesome group.

> >

> > Just had to vent this....my mother recently called and told me

she

> > decided I just needed to " snap out of it " and " force myself to

do

> > things " She works in a pharmacy for god's sake...I just figured

she

> > might take illnesses seriously. Bleh.

> >

> > Shandi

[Guest guest]

Hi Dana!

Oh don't you just love the advice? If you just joined a gym or

changed your hair color, you'd cheer right up and just be infused

with so much energy! Certainly I exercize, but I do stretch and walk

so my knees don't lock up and my muscles don't get so stiff I can't

hobble out of bed. It is almost always painful and I must do far

less than normal people do.

And if you tell someone that sometimes you get so tired you can

barely open a candy bar to eat or a soda to drink? You just get

laughed at. But sometimes, that's the way it is.

Sometimes I do something, like your gardening. I clean or or

organize or something, or go out to eat. And then I pay with pain

and fatigue. And then a friend will say...well...you did it just

yesterday, aren't you better now? NO!! I just got lucky yesterday

and now I am feeling the effects of what I did!

Sometimes I get so fed up with the lame advice, especially when

you've ALREADY explained what you have. No, two tylenols will not

touch the pain. Sometimes prescriptions don't. No we cannot just lay

down and sleep whenever we want. We cannot just cheer ourselves up,

paste a phony smile on our face, and talk ourselves out of the

symptoms. They are NOT psychosomatic. I baked cookies yesterday?

Good for me, but today I might be curled up in bed with a couple of

heating pads and the blinds shut tight cause I have a migraine.

Here's hoping our families get educated!

Shandi

> > Welcome to all the new people. Hope you find all the friendship

and

> > answers that I know are here. This is an awesome group.

> >

> > Just had to vent this....my mother recently called and told me

she

> > decided I just needed to " snap out of it " and " force myself to

do

> > things " She works in a pharmacy for god's sake...I just figured

she

> > might take illnesses seriously. Bleh.

> >

> > Shandi

[Guest guest]

I'm constantly putting a phony smile on my face. I don't want pity from people,

so I don't always say how bad I truly am. The only symptoms I ever mention are

fatigue, insomnia, headaches, dizziness, and stomach aches. I don't go into the

blurry vision, the constant pain. Numbness in my hands, ringing in my ears, or

any of the problems secondary to this illness. Like depression, low

self-esteem, low self-worth. Just the problems that noticeably change how I

act. But then I wonder why people just say that it's not so bad, or that

everyone gets tired.

Sometimes I get so fed up with the lame advice, especially when

you've ALREADY explained what you have. No, two tylenols will not

touch the pain. Sometimes prescriptions don't. No we cannot just lay

down and sleep whenever we want. We cannot just cheer ourselves up,

paste a phony smile on our face, and talk ourselves out of the

symptoms.

[Guest guest]

I'm constantly putting a phony smile on my face. I don't want pity from people,

so I don't always say how bad I truly am. The only symptoms I ever mention are

fatigue, insomnia, headaches, dizziness, and stomach aches. I don't go into the

blurry vision, the constant pain. Numbness in my hands, ringing in my ears, or

any of the problems secondary to this illness. Like depression, low

self-esteem, low self-worth. Just the problems that noticeably change how I

act. But then I wonder why people just say that it's not so bad, or that

everyone gets tired.

Sometimes I get so fed up with the lame advice, especially when

you've ALREADY explained what you have. No, two tylenols will not

touch the pain. Sometimes prescriptions don't. No we cannot just lay

down and sleep whenever we want. We cannot just cheer ourselves up,

paste a phony smile on our face, and talk ourselves out of the

symptoms.

[Guest guest]

Shandi writes,

> Sometimes I do something, like your gardening. I clean or or

> organize or something, or go out to eat. And then I pay with pain

> and fatigue.

>

> Yes, I know about that. I cooked Saturday in my chili cookoff. I didn't

> have to stand or walk a lot. I had a motor home with air conditioning that

> I could go in and lay down. It belongs to some friends of mine that I cook

> with. It was hot.

>

> By the early afternoon I was in so much pain that I took my medication and

> went to lay down. By the time we got home, I was in so much pain that I

> was crying. I have not been able to do anything since then. It is Tuesday

> and the pain is still so severe that I can hardly bear it.

>

> I am not sure that having that little bit of fun is worth the pain.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Just a quick note to say hello and introduce myself...

I'm Kit, a 33 year old separated female in upstate New York.

I suffer from Anklyosing Spondylitis (diagnosed 1998) and have just

been diagnosed with Fibromyalgia as well over the past week.

I have been put on Elavil by my doctor, but so far it only seems to

knock me for a loop and make my brain foggier than normal... does

anyone have any suggestions? I also take 400 mg Celebrex daily as

well as Zoloft...

Kit

[Guest guest]

Just a quick note to say hello and introduce myself...

I'm Kit, a 33 year old separated female in upstate New York.

I suffer from Anklyosing Spondylitis (diagnosed 1998) and have just

been diagnosed with Fibromyalgia as well over the past week.

I have been put on Elavil by my doctor, but so far it only seems to

knock me for a loop and make my brain foggier than normal... does

anyone have any suggestions? I also take 400 mg Celebrex daily as

well as Zoloft...

Kit

[Guest guest]

Hi Pam,

I feel so ignorant! I had no idea my Graves' Disease didn't go away when my

thyroid went hypo, after my treatment with the iodine. In 1993 I had no

access to the online world, and my three thyroid books actually don't say

that much about Graves'. And I have NEVER read this:

>>Graves' is caused by antibodies NOT by a problem with the thyroid itself.

The antibodies make the thyroid work overtime and give us too much hormone.

The drugs get rid of the antibodies.<<

I only see my endo once a year, but this makes me want to see him before

next August, just to start asking questions. I know he'll say, " don't you

feel fine? " and the answer is actually yes, I think. I'm so busy, I hardly

think about it. I just hate how my eyes look.

Respectfully,

[Guest guest]

In a message dated 12/4/2002 5:37:51 PM US Eastern Standard Time,

ereynik@... writes:

>>>>Hi, my name is and I am suffering from Chronic Pancreatitis.... I'm

not sure if the message was received since I was not a member at that time.

Therefore, I am hoping that either Shirley or someone can contact me as I

have so many, many questions and am not sure where to start or who to talk

to. I am in the midst of trying to find a surgeon to perform a Total

Pancreatectomy with an Islet Cell Transplant. I would appreciate any help I

can get. Thanks>>>>>

Hi ,

Welcome to the group. Congratulations for jumping in and asking questions.

Actually, we have to. Time is of the essence. And. the questions are so

important and have serious implications. I am so grateful for the internet,

but not so much for the technology, as much as for the wonderful people it

has connected me with. I just counted the number of new members for November.

We had 42. I have learned something from every single person I have ever

met. I open myself up to whatever anyone has to offer. I truly believe that

God works through us, and living with that philosophy, has expanded my wealth

of resources.

I am glad that Mark, the Northwest Regional Rep., was able to provide you

with the information regarding the Islet Cell Transplant. The top5plus5

serves as the PAI's medical library of information. Our primary goal is to

provide support, assist with referrals, and connect you with information to

empower you to make informed health care decisions. This disease has forced

the evolution the interdisciplinary health care team. And, like you, ,

as a patient, I am one of the primary members.

It is the hope that the PAI can serve as an advocate to promote mutual

respect and dignity as we lay the groundwork to bring this newly formed

relationship to fruition.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

In a message dated 12/4/2002 5:37:51 PM US Eastern Standard Time,

ereynik@... writes:

>>>>Hi, my name is and I am suffering from Chronic Pancreatitis.... I'm

not sure if the message was received since I was not a member at that time.

Therefore, I am hoping that either Shirley or someone can contact me as I

have so many, many questions and am not sure where to start or who to talk

to. I am in the midst of trying to find a surgeon to perform a Total

Pancreatectomy with an Islet Cell Transplant. I would appreciate any help I

can get. Thanks>>>>>

Hi ,

Welcome to the group. Congratulations for jumping in and asking questions.

Actually, we have to. Time is of the essence. And. the questions are so

important and have serious implications. I am so grateful for the internet,

but not so much for the technology, as much as for the wonderful people it

has connected me with. I just counted the number of new members for November.

We had 42. I have learned something from every single person I have ever

met. I open myself up to whatever anyone has to offer. I truly believe that

God works through us, and living with that philosophy, has expanded my wealth

of resources.

I am glad that Mark, the Northwest Regional Rep., was able to provide you

with the information regarding the Islet Cell Transplant. The top5plus5

serves as the PAI's medical library of information. Our primary goal is to

provide support, assist with referrals, and connect you with information to

empower you to make informed health care decisions. This disease has forced

the evolution the interdisciplinary health care team. And, like you, ,

as a patient, I am one of the primary members.

It is the hope that the PAI can serve as an advocate to promote mutual

respect and dignity as we lay the groundwork to bring this newly formed

relationship to fruition.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

In a message dated 12/4/2002 5:37:51 PM US Eastern Standard Time,

ereynik@... writes:

>>>>Hi, my name is and I am suffering from Chronic Pancreatitis.... I'm

not sure if the message was received since I was not a member at that time.

Therefore, I am hoping that either Shirley or someone can contact me as I

have so many, many questions and am not sure where to start or who to talk

to. I am in the midst of trying to find a surgeon to perform a Total

Pancreatectomy with an Islet Cell Transplant. I would appreciate any help I

can get. Thanks>>>>>

Hi ,

Welcome to the group. Congratulations for jumping in and asking questions.

Actually, we have to. Time is of the essence. And. the questions are so

important and have serious implications. I am so grateful for the internet,

but not so much for the technology, as much as for the wonderful people it

has connected me with. I just counted the number of new members for November.

We had 42. I have learned something from every single person I have ever

met. I open myself up to whatever anyone has to offer. I truly believe that

God works through us, and living with that philosophy, has expanded my wealth

of resources.

I am glad that Mark, the Northwest Regional Rep., was able to provide you

with the information regarding the Islet Cell Transplant. The top5plus5

serves as the PAI's medical library of information. Our primary goal is to

provide support, assist with referrals, and connect you with information to

empower you to make informed health care decisions. This disease has forced

the evolution the interdisciplinary health care team. And, like you, ,

as a patient, I am one of the primary members.

It is the hope that the PAI can serve as an advocate to promote mutual

respect and dignity as we lay the groundwork to bring this newly formed

relationship to fruition.

Karyn E. , RN

Founder / Executive Director

Pancreatitis Association International

Corp. Office: Indps, IN, USA 1-

[Guest guest]

HEATHER THIS IS SO FUNNY ! WELL I ALSO LIVE IN SAN BERNARDINO ! WHAT DOCTORS ARE YOU USING ? I REALLY NEED A GOOD DOCTOR CAN YOU WRITE ME PLEASE ? TAKE CARE SHIRLEY

[Guest guest]

Hi all,

Thanks for all the welcome messages. I hope to learn a lot from this

group. I wonder how many of you started on oral meds but moved to

insulin, either after a short or a long time, as the person who said

they went on insulin after 10 years. Not going on insulin was a great

incentive to my exercise and weight loss regimen for the first year

after I was diagnosed, but during the second year my bs was frequently

too high--over 290--to make walking or other exercise safe. I feel like

a failure because I could not control my bs with diet, exercise and oral

meds. My dr. was supportive of my efforts to stay off insulin but

finally he had to have a stern talk with me to start taking shots.

Cindy

[Guest guest]

Welcome to the groups . You have picked a great group to be apart of. Lots of support. I have been in TOPS for a long long time. Was out for awhile, then back, Even if we give up on TOPS, TOPS never gives up on us. I finally reached my Goal in 1999 and graduated at IRD in San Antonin, then I lost it in 2001 and regained it in 2003. I am so happy to be a KOPS even if it is a struggle at times. Hope to meet you at SRD W

Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!