Re: I need to spill my guts...

[Guest guest]

dont let it get you down your not on your own i feel exactly like you do at the

moment

[Guest guest]

Kara,

I have not answers for you but I can say I am sending you a cyber hug! If

you would like you can email me personally and I will give you my phone number

and you can call me. I will listen.

It is a shame that we are treated that way by emergency rooms. I wish I were

closer, I would come and see you. I would be willing to take you to the

hospital. In fact, we could have an i.v. drip at the same time!

Please email me and call me! I am very willing to listen. I don't even have

to talk I can just listen. I know I have a wonderful family and great friends

who support me and love me. I cannot imagine what would happen if I did not

have them.

I know I don't know you but I am very willing to be there for you. I feel

like God put us all together for a reason. Maybe mine is to be here for you.

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Kara,

I really think you need to find a psychologist or psychiatrist.

Someone that you can talk to about this and who can help you to get

through this depression you have found yourself to be in by this

illness.

With all the medical conditions that were afflicting me, I was

finding it harder to deal with and felt that I had to keep a lot of

it inside me so my young daughter wasn't scared at her mummy being

so sick, and my husband also was worried and upset at the run of bad

fortune I had been having with illness after illness and him being

powerless to do anything, not to mention doctors that couldn't or

didn't want to help me.

I had a great family doctor who asked me every few visits if I felt

the need to see a psychologist, and up until 7 months ago, I said

no. Then one day I thought to myself...I need to talk to someone who

doesn't know me and can help me to deal with it all..

I had an appointment scheduled with my oncologist a week later and

during my checkup, I asked if he could refer me to a psychologist.

They happened to have a program running for patients with chronic

illnesses which was to help a person deal with their illness by

changing and learning behavioural and cognitive thinking.

I was found to be clinically depressed and accepted into the

program. My depression wasn't as bad as some, and didn't require me

being on antidepressants yet. I worked my way through the course,

meeting with my psychologist weekly, or when I could..and I was

amazed at how much more easier it became to deal and cope with my

medical problems and family members by talking with someone and

changing my thinking and behaviour when it came to illnesses.

This is only my story in brief, but if you decide that it might be a

good idea for you to seek a professional out to talk to, about your

CP and family & their attitudes and treatment by medical staff, it

could help you immensely.

As for how you have been treated when you went to the ER, there is a

website...www.jcaho.org that you can go to and lodge a complaint

about the hospital and staff. This organization accredits the

hospitals and try to improve the quality of care people receive.

No matter what reason a person is in the ER, they should not be

treated as you were. I would be reporting them to this organization,

as well as a letter to the president of the hospital, and the

patient advocate. If you need help with this, I am only too happy to

work with you in typing up a letter to send to the necessary people.

For this you can email me privately using the email address below my

name on this message.

When people let medical staff get away with mistreating patients, it

isn't going to ever change anything, and it will just happen to the

next person and including yourself again and again.

Every person has a right to be treated with dignity and respect, no

matter what their ailment might be. It is unfortunate that some

medico's can't see that.

Another thing that you can do is to ask either your family doctor,

Gastroenterologist or Pain Management Doctor to write a letter

explaining your illness and the pain medicine you are taking for the

CP. Keep it in your purse and show it to the ER staff should you

need to go there again. It may help in how you are treated...not

that it should have to come down to that. I carry one as do some of

the other people on this site.

I hope for something positive in your life, to bring a smile to your

face and give you a reason to look forward to each day that enfolds.

I can't physically give you one..but here is a ((((hug)))) from me.

Ward

PAI Administration Support Staff

dceward@...

[Guest guest]

Hi! My name is Bev Swales and I live in Logan city Brisbane Australia.

I am sorry you feel so down and I now exactly what you are talking about,

believe me I have been were you are now and the only thing that keeps me going

is my kids. I love them so much, I have 7 kids, 5 girls & 2 boys. I first got

Pancreatitis when I was 16 and I am now 42 and still suffer with it.

Remember there are people out their on this web site I am sure would be happy to

talk to you. The people in the E.R.'s here treat me the same way. I get so

sick and tired of being treated like I am a druggie and being told by hospital

staff I deserve what I get, if I didn't drink or if I didn't take drugs I

wouldn't be in this situation. I have never drunk in all my life and I don't

take illegal drugs. All I do is take one day at a time. Please don't give up

on your self. I believe you are a strong person, you wouldn't have made it this

far if you weren't. Keep your chin up!

I will keep you in my Prayers and thoughts.

Regards

Bev.

[Guest guest]

Dear Kara,

You have done nothing wrong, and should never have been treated

without compassion and respect while you were at that hospital. Only

uneducated and terribly biased people would behave in the manner that

the nurse and doctor behaved with you, and you need to learn to ignore

people like that who try to minimize your disease and treat you so

unfairly.

These people, and I'll not dignify them with the titles of

" professionals " , since their conduct has shown that they aren't, need

to be reported to JCAHO, immediately.

Click on this link and go to the section for filing a complaint:

www.JCAHO.org

If you don't do this, the next person like you, or you yourself, will

have to suffer through the same indignities if you ever return to the

same facility. That's not suitable health care.

You also should contact your doctor, if you haven't already, and tell

him that methadone isn't a suitable pain medication for you. And

speaking of your doctor, is it possible for you to find another one?

You need to be treated by a doctor who has a more aggressive plan of

treatment which includes finding suitable pain medication for you so

that you can function better on a daily basis. You shouldn't have to

be so uncomfortable and in such pain that you can't see the value and

reasons for WANTING to function. Your mental health is as important

as your physical health, and a good doctor understands this, and keeps

a close eye on his patient's mental health and any signs of depression.

It's rare for anyone with a chronic pain condition to not go through

deep periods of depression, and for some it is much harder than for

others. This needs to be treated, also, and it's important that you

find someone who can help you through the hills and valleys of this

journey with CP. I often call it a journey because there are so many

features of living with this disease that resemble a journey. There

are bumpy roads, many twists and turns, a feeling of never knowing

what's around the next corner, areas of smooth and straight highways,

and places where the view is spectacular, as well as places that are

hard to navigate. Each step of this journey reveals something new,

and we need to be prepared to travel this highway with a full tank of

gas and a lot of help, because there's no map to guide our way, only

tips and guidance from our support system.

The point that you've reached now is one where you need some help with

your depression so you can forge ahead. Talking with a phychologist,

phyciatrist or trained counselor would be preferrable, and most

insurance companies will approve this. Your doctor could refer you,

if you have to continue using the same doctor that you do now. He

could also recommend a suitable anti-depressant that would help you.

If you ask around, you'll find that most of us, and certainly most of

us that have had CP for some time, are on anti-depressants. I've been

taking an anti-depressant since '02, and don't know what I'd do

without mine. I was feeling as you are now, and seeing little purpose

in my life, or need for me to continue to be a burden for everyone.

Fortunately, my doctor recognized this and I've been taking Lexapro to

help deter these negative thoughts. It doesn't mean that there aren't

occasional times that the negative thoughts still take hold, but the

medication helps my mind push those thoughts away.

You have a son that you love and who loves you, and that alone, is

reason enough to keep going. You say that you have no one, but this

isn't true, you do have your son, and I'm sure there are others who

care very deeply for you, even though you may have shut them out.

I, too, have shut out many people from my life, for the same reasons

that you acknowledge. These people don't understand, and probably

never will, so I don't bother to open up to them. And families can

hurt us without realizing it. Only one of my three siblings

understands my disease, the other two have really never taken the time

or interest to know or understand what I'm going through. I'm sorry

that your parent's don't show the concern and love that you are aching

for. I have sought the same from my only sister, and she never seems

to respond in the simple way that I need.

If you look around our group, I think you may find that there are

others like us, that have experienced the same. Some of us are

fortunate enough to have a spouse or a partner who do care, and they

do provide tremendous support, as well as children, who are are true

reason for living and looking forward. My children are my anchor and

it's my love for them and my husband that keeps me focused. I know I

am fortunate for their support, and there are times when I lean very

heavily upon their shoulders. There may be friends of your's who

would be very willing to know more, and help you more, if you only

asked.

The support that this group has given me has been the most

instrumental of all, and at the times that have been the darkest in my

journey, it's been my friends here that have shined the light to help

me see the way through to another, better, day. You need to reach out

and embrace the support of the many faceless friends here who are

always willing to help you. We do care about Kara. And believe me,

there are, and will be, better days.

Please see a doctor about your depression, and insist that he, or

another professional, help you through this. You have just been

through a very traumatic experience at a hospital with people working

there that have clearly forgotten what they are there for. This

experience has hurt you, but there are ways to heal from this

experience. You have a son who needs you, and other people who DO

care. Your journey is not over yet, and it will be smoother with the

right help from the right people.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

Southeastern Regional Rep.

PAI

Note: All comments or advice are based on personal experience or

opinion, and should not be substituted for professional medical

consultation.

[Guest guest]

Kara I know exactly how you feel. Most of us here do as well.

Firstly I agree 100% with everything had told you. Get a

letter from your pain doc explaining exactly why you are on

methadone and keep it in your wallet to show if you ever have to go

back to the ER. As well as writing to JCAHO; that was great

misjustice and just bad medicine. Unfortunetly health care workers

are just like the rest of the human race, they can act like idiots

just as easily as anybody else. That doesn't make it right tho and

the powers that be should be aware. At the very least find out who

is the nurse manager of the ER and write her a note explaining what

had happened and how you were misjudged merely due to the medication

prescribed to you by your pm doc.

Our loved ones often find it difficult to deal with a chronic

illness and they will go through there emotional ups and downs as

well. I know your parents are heart broken that you are so ill. No

parent wants to see their child hurt. It is difficult for them and

they will have to go through there own adjustment phase just as you

are. Allow them a little time to deal with all this. You had

mentioned previously you have younger siblings. Kind of sounds like

they may have their hands full. Being a parent is very difficult

and its frustrating when we cant fix the pain with a bandaide and a

hug and kiss. Your parents were there in the ER and that should

count for something. I am sure they find the whole situation very

stressful and frightening but just dont know what to do.

I feel for your fears and concerns but please dont give up. I felt

exactly the same way less then a year ago. If it wasn't for a few

very loving members of this group I would not be here now. I am

also very fortunate to have had a physician who would not give up

either. I am cured now and doing wonderfully. IT CAN HAPPEN TO YOU

TOO. Dont give up even if it means you have to go to a dozen

different doctors or even to a different state. When are you seeing

the GI doc at the university? Also starting on such a strong

medication as methadone it is bound to have affects on your

sensorium and how your body processes stimuli. Give the meth a

chance to do its job, it will take time for your body to adjust to

it.

Vent and spill your guts all you want, we are here for you 24/7.

Warmly,

(SC)

[Guest guest]

Kara,

You have already gotten lots of good advice, so I won't repeat it all.

But please report the hospital and individuals invovled.

Also counseling would be a tremendous help. I know this from personal

experience. I have battled Manic/depression for 8 years and I swear

by my counselor and shrink (yes it takes 2 for me to stay on track

and balanced)!

Chronic illnesses are tough to deal with.

Thanks for sharing with this group! Everyone here loves one another

and will always list to you.

I wish I could visit you in person just to give you a hug!

Please keep in touch.

Love, Cyndi in York, SC

[Guest guest]

Kara,

I see Heidi, Angie, , and several others have given you good advice

which I won't

repeat. As I told you, I do feel you'll get a lot better treatment once you get

to UCD. I can't

speak for their ER. No experience there. When I had my acute attack I was out

when I was

admitted and for two weeks after.

Do wish I could give you a hug in person, and will do so if we can cross paths

at UCD. Let

me know when your appointment is. I expect to be going in soon for at least a

week for

the surgery on my pseudocysts, so you might find me there.

And feel free to give me a call at the number I gave you. My prayers are with

you.

Kurt (CA)

[Guest guest]

Kara,

the next time you have to go to the ER, call me and I'll find a way to

get up there. I'll stick up for you. No human being should be treated

the way you are. I'm appalled. Please, Please, make a complaint to JCAHO

regarding this hospital's treatement of you. JCAHO is the organization

that all hospitals must get accreditation from in order to be a

hospital. http://www.jcaho.com. There is a section on the home page

that tells you to click on it to make a complaint. If you can get the

doctor's and nurses's names it would help, but if you don't, just list

the time these doctors and nurses had you in their so-called " care " .

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Kara,

YOU MUST FIGHT! Dont give in and let these people win.Or for that

matter don't let this disease win! There is help out there for you .

Find you another dr. please. No dr. should even let someone treat his

or her patient this way. My daughter was treated the same way UNTIL I

found the Dr. that would not put up with anyone treating her like she

was a drug addict. She never took a drug in her life until this

disease. And yes it makes you cry when you know their wrong. She was

put on morphine a week and then demerol a week and then dilaudid a

week and then sent home cold turkey. We never even knew what a

withdrawl was. The very next day she got out of the hospital she was

sweating so bad but she was freezing and couldn't be still. we even

went up to our town drug store and asked if there was anything over

the counter for cold sweats we thought it was a hormonal thing .But

when I took her to the hospital and they couldn't believe that she

was sent home cold turkey off the drugs. She was in for 3 more weeks

just for withdrawls.And it wasn't her fault, but she was treated as

if it were. But after that she was treated like she was a drug addict

because she had withdrawls before . We weren't the ones to blame for

the withdrawls.But thats just how ignorant people that don't

understand all they have to do is READ I found so much information on

pancreatitis that I know more than some of the nurses know. Thats sad.

(That was before we found the right Dr.)But really Kara think about

it you said yourself all you have is your son. That right there is

reason to go on living. Who cares about the ones who doubt you. Hold

your head up high. You have a son who loves you. And you need to

fight for him if for nobody else.You know your not a drug addict. So

don't let them make you feel ashamed.We know your not a drug

addict.So let us help you through this. Your son knows your not a

drug addict.Ask him for a hug let him show you. God knows your not a

drug addict.Thats all that matters.And there is a Dr. out there that

believes you too. For the ones that don't believe you , You don't

need them. You do have friends. If you didn't before, well you do

now.Keep your head up .And you don't have to hide your pain from

people. If your friends tuck their tails and run... then they weren't

your friends to begin with. You shouldn't have " PART TIME FRIENDS " If

they want to be around when your having a good day then they

shouldn't be afraid to be around when your having a bad day. All of

us here are your friends and we will always be around good day or

bad. Keep looking for a dr. that won't push you off as a drug seeker

I promise there are some out there.If you don't feel comfortable with

one then go with your instinct, And look elsewhere.Please.And only

then will you find your answer.Do not give up on life even if life

feels like hell right now. You can't do that to your son. If you feel

like you wish your heart would just stop beating then let it beat for

your son.Even if he they try to keep him away,He loves you. Don't

crush that. Any time you want to talk I'm here ...Promise.. Just hold

your head up and say " I WONT LET THIS BEAT ME " . Think about it.

Pleeeeeeeease. Your friend (that will always be there) deedee

hubbard

[Guest guest]

I agree 100%, well put, Kara we have all been, I myself was dragged out of my

own hole by my wife and kids, just ask and we will be there.

Beaumont

Courtice, Ontario

Canada

sbeaumont0@...

pancreatitiscanada@...

deedeehubbard@... wrote:

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>Kara,

>YOU MUST FIGHT! Dont give in and let these people win.Or for that matter don't

let this disease win! There is help out there for you . Find you another dr.

please. No dr. should even let someone treat his or her patient this way. My

daughter was treated the same way UNTIL I found the Dr. that would not put up

with anyone treating her like she was a drug addict. She never took a drug in

her life until this disease. And yes it makes you cry when you know their wrong.

She was put on morphine a week and then demerol a week and then dilaudid a week

and then sent home cold turkey. We never even knew what a withdrawl was. The

very next day she got out of the hospital she was sweating so bad but she was

freezing and couldn't be still. we even went up to our town drug store and asked

if there was anything over the counter for cold sweats we thought it was a

hormonal thing .But when I took her to the hospital and they couldn't believe

that she was sent home cold turkey off the drugs. She was in for 3 more weeks

just for withdrawls.And it wasn't her fault, but she was treated as if it were.

But after that she was treated like she was a drug addict because she had

withdrawls before . We weren't the ones to blame for the withdrawls.But thats

just how ignorant people that don't understand all they have to do is READ I

found so much information on pancreatitis that I know more than some of the

nurses know. Thats sad. (That was before we found the right Dr.)But really Kara

think about it you said yourself all you have is your son. That right there is

reason to go on living. Who cares about the ones who doubt you. Hold your head

up high. You have a son who loves you. And you need to fight for him if for

nobody else.You know your not a drug addict. So don't let them make you feel

ashamed.We know your not a drug addict.So let us help you through this. Your son

knows your not a drug addict.Ask him for a hug let him show you. God knows your

not a drug addict.Thats all that matters.And there is a Dr. out there that

believes you too. For the ones that don't believe you , You don't need them. You

do have friends. If you didn't before, well you do now.Keep your head up .And

you don't have to hide your pain from people. If your friends tuck their tails

and run... then they weren't your friends to begin with. You shouldn't have

" PART TIME FRIENDS " If they want to be around when your having a good day then

they shouldn't be afraid to be around when your having a bad day. All of us here

are your friends and we will always be around good day or bad. Keep looking for

a dr. that won't push you off as a drug seeker promise there are some out

there.If you don't feel comfortable with one then go with your instinct, And

look elsewhere.Please.And only then will you find your answer.Do not give up on

life even if life feels like hell right now. You can't do that to your son. If

you feel like you wish your heart would just stop beating then let it beat for

your son.Even if he they try to keep him away,He loves you. Don't crush that.

Any time you want to talk I'm here ...Promise.. Just hold your head up and say

" I WONT LET THIS BEAT ME " . Think about it. Pleeeeeeeease. Your friend

(that will always be there) deedee hubbard

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