Re: question???

[Guest guest]

Deedee,

I was never one to wish this type of pain on anyone, but some

doctors...I wish they could walk a fraction in my shoes sometimes.

When I had my attacks, they came fast and furious and my life

became...hospital 4 days, home 2, hospital 4 days, home 3..then I

was hospitalized for 2 1/2 months straight, and the nurses were

going to put a gold plaque on my door which said CATH's SUITE *L*

It was hard, especially when I had a 2 year old at the time and she

didn't understand why she had to visit mummy at the hospital instead

of mummy being home with her. It got to the stage where I told my

mother not to bring her in to see me anymore because she would

scream and cry and almost have to be dragged into the room. It upset

me that she didn't want to see me, but it hurt me more to see the

anguish she went through. My doctor who didn't know how to help me

except manage my pain, had so much compassion. She would be in my

room crying at the mess my life had become. When I was having a good

day, she'd let me go home for a few hours so I could see my husband

and little girl. There were times when I wasn't up to going home,

but I would act like I was so I could do it. I usually only lasted

1/2 hour or so at home, but it was better than nothing.

I have been fortunate to have the pancreatitis stop now. A surgical

procedure fixed it for now, but I have a whole new medical mess

going on with my body, and I am now dealing with that.

My husband told me the other day when I mentioned that I was going

to see an ENT doc for the reason that I haven't been able to breathe

with my nose for a couple of years now, that there is always

something wrong with me. It hurt when he said that, but I know he

didn't mean it as it came out. I reminded him that all my problems

stem from one hereditary condition that I suffer from and if I

didn't have that, then I would not have ever needed to see a doctor

except about my nose that has gotten worse over the years since it

was broken once. I just put that on the backburner whilst worse

stuff was happening.

Before my pancreatitis started, the only time I saw a doctor was for

a pap smear and my annual scopes for my hereditary condition. Now my

life seems so busy, and yet it is all follow up's or seeing about a

new surgery I have to have...all doctor's appointments. This is how

my life has turned out, and all I can do is accept the change, cope

with it, incorporate it into my homelife, and enjoy my family whilst

I can. This has forced my husband to be a more active father,

helping me at times to bathe our little girl, or get her lunch or

breakfast, or just for him to amuse her so I can get some extra

sleep in here or there..which hasn't been a bad thing.

I think i've gone way off track with what I was originally going to

say, but hopefully it will get better for your family, at least in

the coping department, and how to change your lives until your

daughter's situation improves, whether it be with less pain from the

pancreas easing up, or her body adjusts to it.

[Guest guest]

Deedee,

Most of us have learned to cope with this disease the best we can. In regard

to employment, the picture isn't that favorable. For those of us that were

employed on a full time basis, many have had to cut back to part time, or have

been forced to give up work entirely. The continual days of inability to work,

hospitalizations, medical appointments, etc., add up, until eventually you find

that you aren't able to physically withstand employment. I don't think you'll

find too many members here that are employed on a full time basis.

I was actively working as an architectural draftsman when I was first

diagnosed with CP. I have (had) my own business, which I'd moved into my

home about five years before the illness began. It was an ideal situation,

because I was also raising my grandchild, and this arrangement allowed me

to be available for him. I could be flexible enough with my hours so that I was

there to take him to school, go to parent-teacher meetings, attend school

functions, and be there after school to help him whenever he needed it. Prior

to that, I was working with a custom building design and construction

company, and I had to have him in day care. I started free-lancing as soon as

he started kindergarten, and we loved the fact that I was able to be free for

his

needs whenever it was necessary.

As the pain from the CP increased to the point that I was laid up in bed, or

just

unable to sit at the drawing board for any measurable length of time, I was

forced to cut back on any new contracts. It finally reached the point where I

had to give it up entirely. I applied for Social Security Disability over a

year

and a half ago, was denied twice, and now am awaiting a SSDI judicial

hearing on the 27th of January that will determine whether or not I will be able

to receive SS disability benefits.

This is the route that many of us have been forced to go. It's not something

that any of us have wanted to do, but we've been unable to work due to the

limitations that CP has placed on us. Many applicants are initially denied like

I was, but most, in the end, do finally receive their benefits at a judicial

hearing.

I didn't mean to paint such a depressing picture, but that is what's happened

with many of us. That's one reason why I believe so much in the TP-ICT. For

a young person with CP whose pain is untreatable by any other surgical

procedures, I think that surgery may be their only hope of getting their health

back. If I were younger and knew what I do now about all of this, that's the

route I would have taken. In fact, we were in the planning stage of applying

for the TP-ICT the second year after my initial diagnosis. But, I rapidly and

unexpectedly, declined in health, and within three months went into diabetic

ketoacidosis. It was too late.

You have to understand that this is only my opinion. Everyone has to make

their own decisions on any surgery based on what they think is best and on

what their physician's recommend.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

SE Regional Rep., PAI

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

only, and should not be substituted for professional medical consultation.

Deedee wrote:

>I have a question, how do yall go about having any type of a normal life as

in work or just functioning at all with this disease?

[Guest guest]

Deedee-

I am sorry that your daughter's block did not work, I was really

hoping it would, she (and you) have been through so much. I wish I

could offer you some wise words to tell you how to cope with such an

illness but, I can't. I wish I had the answers. The few things I

have learned along with the way...seize the good days when they come

around (but don't over do it!) Let people help you (although you are

not the one in pain, you are caring for one that is, which can take

a huge toll on you) Get informed...reasearch all you can, I have

found that knowledge keeps me balanced, and gives me a feeling that

I have a little bit of control, find a good joke book or something

humorous, a good laugh is the best medicine there is, and the last

thing: take one day at a time. I know that if someone had told me

that I would feel like this today 5 years ago when this all started,

I would have given up, literally.

I'm so sorry your daughter has been so sick. May God bless you and

your daughter.

Hugs,

Suzi B.

Colorado

[Guest guest]

DeeDee,

I am going through a similiar thing your daughter is going through.

My job performance and parenting has suffered because of the pain

and the constant testing and hospitalizations.

Just like you, I would never wish this pain on anyone but it would

be nice if the doctors, etc. could experience what we go through for

just one day. I think they would be a little more compassionate as

to what we live through everyday.

The best advice I can give you is to hang in there. I know this

isn't much but this is how it's been for me. Support your daughter

in what she feels she needs to do with her work situation. Because

pain is so subjective, even medical people don't believe us when we

say we are in pain. There isn't much help in the community at large

because this disease isn't that well known. People don't know what

it is like to have this disease and it's hard for them to understand

the disability it causes.

Myself, I have the support of my family and all of the wonderful

people in this group. With this support I get by one day at a

time. You are going to find that this is the best anyone can do.

I'm sorry if this hasn't been much help. And I feel bad for all the

suffering you yourself are going through because of this. I think

that it has to be hard on the people that love us because there is

nothing that they can do to help us except support us. I know from

my own experience that my husband has suffered along with me because

he is helpless to take the pain away and make everything better.

My advice is to find out as much as you can about this disease and

what options you have for pain control. Also, find out what

disability coverage your state offers, if any.

I know this isn't much when the person you love is in constant

pain. I hope and pray things get better for both you and your

daughter.

Kat