Re: all is lost.....

[Guest guest]

In a message dated 9/5/2002 3:48:37 AM Eastern Standard Time,

cehlers@... writes:

Our Dearest Carole:

When I spent 15 weeks off & on in the hospital with my 2nd pregnancy

due to an undiagnosed (at the time) premature labor, about 10 years before I

knew or had even heard the words/letters EDS, I had to lay on my Right side

all the time & not get out of bed. If I was lucky & had a bed that allowed

me to look out of the room, there was a poster with a little kitten hanging

on to the end of a long rope that said, " When you reach the end of your rope,

hang on! "

I don't know what else to say, as that is what kept me going. And

now, that baby who was not expected to be born alive & if he (it, at the

time), did, " it " would likely be severely handicapped. He is now a Dean's

list student, who plays hockey for the U of Conn. & neither he, nor my

daughter have EDS. Miracles do happen.

And now all I can think of is that you are blessed with oodles &

oodles of people who truly care about you & are with you always!!! And, that

doesn't include that wonderful hubby of yours. You are a far too brilliant,

beautiful & loving person for anything bad to ever happen to you that can't

be rectified & we will all band together to make sure, each in our own way,

to insure that. I love you & know many others who feel the same. Hang on to

the rope. Luv Ya,

C. Schoenberg, RN

Central NJ EDNF

Hypermobile Type

[Guest guest]

<PRE>I am so sorry you are in this present state. Please know I am lifting you

with healing thoughts and sending you positive healing vibes.

[Guest guest]

Carol,

I am so sorry. I have been there. Not your exact situation. But at the

end of my rope, where there seemed to be no answers ... I am including a poem

that I wrote. This is one that is going into that book that I've written ...

it's OK to cry. Just hang on ... cry, and rest in God's arms, and know He's

crying with you. When the tears are gone, the strength to fight will come

back, the hope will return.

God Shared My Tears

By Peggikaye Eagler

When my heart was breaking,

And desperation was taking hold,

You reached down as promised,

Keeping my heart from growing cold.

You didn't lecture me,

Telling me to stand strong.

You didn't say 'fear not,'

Or tell me my faith was wrong.

I told you my heart was hurting.

My son would struggle all his life.

I could not bear the pain,

I begged you to end my strife.

You looked into my crying eyes,

Telling me to look into your heart.

You showed me that you'd hurt too,

I wasn't alone from the start!

A mother's heart can take so much

A breaking point it will reach.

Father, you understand that point,

And give comfort you don't preach!

The pain I felt, you understood,

Your only son you watched die.

My pain for my child not unique,

You share my tears,

And together we cry.

copyright 2002

[Guest guest]

I guess three is the lucky number. I am on my way to schedule my third

surgery for thyroid cancer. I feel the same say. How come no one ever

told me that after a body part was yanked out, it could grow back! My

thyroid was removed 12 years ago. The meds I took and the tests I had

yearly showed that the thyroid hormones were completely supressed.

supposedly, that suppression keeps any tissue from growing. NOT TRUE!

for me at any rate. This is my 6th neck surgery and you can play

tic-tac-toe on my neck from the scars. I am still in a cast on my right

hand from a thumb joint replacement from EDS. And... I started a new job

on this past Tuesday.

But then I talk to my grandchildren who are 1 and 3... and I wonder how

elizabeth will adjust to preschool and what new word Abigail will come

up with...and if my youngest who is 32 and anxious to have his own

family will finally meet THE one and my oldest who is the the oldest

living hippy in Atlanta will ever get his life together...and I decide

that my life is like a soap opera and I am addicted to the episodes and

it is worth all the pain and suffering because I don't want to miss what

happens next.

Judy/Atlanta .....

I cannot even write this. I think I am at the end of my rope. I

started

getting my pancreatitis again. This is the third time. It is in the

mild

attack stage now but the pain is severe. I thought I would be proactive

and

look up some info on how to possibly home treat this to help it get

better.

I found the info alright but also found the medication I am on to stop

the

polyps from growing causes pancreatitis. Now how come the specialist I

go

to did not tell me that?? The medication is none other than our famous

Celebrex!! I take 800 mg a day!!!! This explains why they did not give

me

my Celebrex while I was in the hospital for my last attack. I am in

between

fuming and crying. The Sulindac can cause it also!!! Sulindac is were

they

get the Aptosyn drug from - the miracle drug I need to get rid of the

precancerous polyps. I found another article saying these polyps that

are

growing in the duodenum are more severe after you have had your large

intestine removed like I have had done.

How much can one person take???? I have done everything I can possibly

do.

I have no more hope. The more I try to help myself the more bad news I

find. Sometimes bliss is ignorance. It's all lost and I am tired of

this.

I cannot tell my hubby what I have found - he is already scared to

death. I

am calling the specialist tomorrow. Sometimes I cannot believe this is

happening to me. To top it off I allergic to most narcotics - so

everytime

I take something for pain I have to take Benadryl and pray I can breathe

for

the next two hours and that the pain is relieved. I have always prayed

for

a painless death but I guess it is not my lot. Thank you all for

showing up

for my pity party. You are the only ones who will. I need to go cry

now.

I still love everybody whole bunches...Carole

[Guest guest]

Oh God, Carol, I am SO sorry to hear about this! What can I say,

dear friend, except that I Love You, and I will pray VERY hard, not

just for you, but for your hubby and family! I realize how you must

feel, but please think of the rest of us that need you to keep

trying, because we would be missing a limb without you! I know it's

hard to face yet another disappointment, but you are an incredibly

strong lady, and I have the utmost faith in you that you can see this

through also! Just know as you're doing so, that you're never alone.

There are many here who will be doing the same as I, sending prayers

and strength and healing thoughts. As so aptly put it, " Hang in

There!! " Love Whole Bunches of Prayers and Strenth for One of Our Own

Lana

[Guest guest]

> that my life is like a soap opera and I am addicted to the episodes

and it is worth all the pain and suffering because I don't want to

miss whathappens next.]

Hi Judy,

I'm so very sorry you're having to go through this AGAIN! Who would

have thought this could happen? You certainly don't deserve

this...but as I said to Carole, and you are like her...you are a very

strong woman, and I do have faith that you can weather yet another

storm to get through this one too! Just to help that along, though,

I will be sending prayers for you and your family, and healing

thoughts your way! Don't give up, Judy! All is not lost! It is US

that would be lost without you! Keep your chin up, as well as your

eyes, as that is where faith comes from!

Love Lana

[Guest guest]

Oh Carole. All I can think of is, we're here. Your saying that to me has kept

me going some days, and I'm sure I'm not alone in my thanks for your being. I

wish -- but I wish a lot, and I pray, and if there's anything else I could

think of to do, I'd do it.

Love, Mark

[Guest guest]

I am so sorry Carole, you are in my prayers.

Kristi

[Guest guest]

Bless you Carole- and may you be comforted by the love that all of us have

for you. Hang tight- you are a survivor, just as we all are. and- you have

a fighting spirit----don't give up now- you are too loved to fall into

despair.

[Guest guest]

Now hang in there Carole, you know that our travels in life are never

smooth for long - we are constantly being tested it seems! It is unfair and

cruel at times even.

The medications that you are on will have a host of side effects, as will

every type of medication there is. I always smile when I see those adverts

on television describing the latest in pain management therapy, etc., and

then listen to their huge disclaimers - it's a wonder anyone takes anything

at all when there are so many adverse reactions to medications that exist!

It seems that any medication, whatever it's purpose, will help one symptoms

yet may bring about other more dramatic issues in other areas! I begin to

wonder if the original symptom is so bad to warrant exposing myself up to

something new in the end! It really does force us to become smarter

consumers, or it can make us fearful consumers - we want relief, but the

price we may have to pay may not be something we can afford!

What do to? This is such a hard question! Talk to your doctor for one.

Your reaction to the Celebrex may just be the cause of your pancreatitis,

yet it helps you in other ways - so the classic 'good with the bad' issue

comes up. Perhaps this is how your specialist viewed it - or perhaps he

simply didn't know. I learn more about side effects from my pharmacist then

I do from any doctor who prescribes them. Many on Celebrex don't have

pancreatitis as a side effect, so perhaps it hasn't been considered as a

cause for this in you in the past. Statistically speaking, this may need

more time to be documented and in larger numbers for someone to stand up and

take notice. I get pancreatitis as a result of a medication I take as well,

but unfortunately, I have to take it. I do not have an adequate alternative

unfortunately. Yes, I do worry about how much longer the pancreas will

tolerate this continued abuse. Hard not to really.

Give your doctor a call and discuss these issues with him or her. Doctors

have a huge job when it comes to managing patients with multiple issues and

much weighs on them and their approaches to treatment. Just be aware that

when you do, not everything you may have read recently may apply to your

exact situation. Literature is more general, your physician is in a better

position to discuss this as it applies to you.

Rest today if you can and please try to not to be overwhelmed. Easier said

than done I know, but it's important!

Jill