excuse me, my frustration is showing

[Guest guest]

I'm majorly frustrated and hoping someone can offer some insight. I

have been working hard the last few weeks to just relax and accept

this new life which has been thrust on me. I finally have reached a

point of peace and acceptance that my life has changed and with it

all my hopes and dreams. I have finally accepted that I will not

finish school or get my degree and that I may need to move in with my

parents and lose my apartment and everything in it. This has been a

complicated mess as I live on public assistance and financial aid

from school (loans and grants). In order to do so I was required to

work (this semester 15 hrs) in addition to attending school. Not a

big deal, I worked at school in the tutoring center. But as those of

you with cp know, just being upright is a battle somedays so the days

I was gone from home for 10-12 hrs a day was too much even though it

was not strenuous. So I met with my worker, told him I was disabled

now and intended to apply for social security disability. No problem

right? I have been resting and generally feeling much better,

although even short trips out wear me out fairly easily.

Well, I had asked my Dr. for note of some sort to pass on to my

worker verifying that I am unable to hold down a job. I went to pick

it up and drop off the specific form that the county requires in

order to excuse me from working. So the note she signed excuses me

from work & school until Mar 21. What am I supposed to do with

that?!? I have been under the assumption that my cp is progressive

and is only going to get worse not better as the damage accumulates.

Now I am too far behind in school to return at this point even though

that is my better option. It is fairly flexible and less strenuous

than a job. Where am I to find a job that only requires me to work a

couple hrs a day, I'm not on my feet much and won't stress me out. I

had that job, the tutoring center, and I still ended up in the ER

continually. I feel stuck now. I went back to school because I

wasn't making enough money to support myself and was sick and tired

of being stressed out all the time over jobs that a shaved ape could

do. Now I feel like I was led to believe I should quit school and

take it easy to try to preserve my health but now I'm expected to

jump back into what was making me extremely sick. I'm confused and

losing my patience and tranquility. I have an appt with a specialist

at UC Med Ctr but not until 4/29. Plus I don't know if this

guy will be any good or if he will just blow me off.

I don't know if I should take it easy to try and preserve my health

while I still have any left or if I should try to push myself into a

hectic life again.Thanks everyone for letting me vent a bit. If

anyone has any insight, please let me know.

[Guest guest]

Hello,

I am sorry I didn't get your name but I have to say first off that you

shouldn't quit school because that is the worst thing you can do. I know you are

in a lot pain and are uncomfortable but you have to try and stick it out. I

mean it will get better and then when you try and get a job out there with no

school will not be good. Trust me on this because I know first hand what I am

talking about, I am 28 now will be 29 end of May and have had this disease for

about 8 years now off and on and I was too in school and I to had to drop

out and I to wasn't doing well but that was the worst mistake I could have ever

done, You have to try and stick through this thing with all you can maybe

you need to seek other methods of treatment to make you comfortable. I have a

few questions for you. How long have you had Chronic or Acute Pancreatitis?

How were you diagnosed with it? What kind of Docs do you see? ( Meaning GI, PM

Pancreas specialty) what kind of docs do you see? What is your treatment plan

right now? Please answer those questions first so I can see and others can

see what to do from here because there is always other things that you can do.

I mean there is the blocks there is medication there is the implant pump

that works well and there is all types of surgery and procedures so don't give

up right now because I can tell you that you will regret it with all your

being. I can tell you I have been through Hell and Back with this disease I

have b

een admitted so many times I can't remember I have had so many procedures

and things that I cant count. I have been on so many medication that I cant

even remember the names of them. I have seen so many Doctors that I am just a

number to them. I mean I have seen so many specialist and I have seen GI PM PCP

i have seen them all and yes I have been blown off like everyone here has

but you have to try again You have to try and find the right combination that

will work for you. It is a very long and boring and painful and hurtful and

depressive process but in the end when it all works out and you will be ok

then it will be ok. I am telling you this from first hand experience not

just telling you because I think no no this happened to me like everyone else

here in the group but again you cant give up and you cant give in. There are so

many things you can do you just need to ask for help and everyone will help

you. but do not give up that can be the worst thing you can do. You will look

back on this when you have your degree and your apartment and you life and

say look what I have done look what I over came. because you know what I have

lost the apartments I have lost the Jobs I have lost the cars I have lost the

money and the so call friends but you know what if you give in you are

loosing yourself and you cant do that.. Please answer the questions I asked you

so

we all here in the group can help you including me a 29 year old Italian in

NYC that never drank and got this dreadful disease because you know why I

DONT know no one knows they think it was because of the Gall Bladder surgery

but

please again get back and I will try to help you out.

Gio

[Guest guest]

Kara,

I know how hard it is. I work at a 5k Kindergarten teacher's aide and have 2

kids of my own. I have been battling this for 2 years and have several times

thought about disability but I don't believe my disease has progressed to that

point yet. I do know that you can't give up. You have to keep trudging along.

Some days are better than others and sometimes if I just get vertical I am

doing good but I keep trying. I have missed alot of work and no longer have any

sick days. My employer has put on my evaluations for the past 2 years that I

miss too much work but I provide a written medical excuse from my doc for

every one! That way they can't say I am just laying out of work for the fun of

it.

I can prove why I have been out of work.

Disability is not an easy thing to get. I don't believe I would get it yet

even though I know have diabetes due to my Chronic pancreatitis and cysts in my

pancreas.

Hang in there and keep on fighting!

Take care!

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'm cfurrently suffering from pancreatitis taking a full course load and

working. I know that this is hard for anyone to handle never mind to handle

when you are in pain. Did you tell the professors your situation? Whenever

I have an attack that gets bad I tell the professor and they always say take

your time and the assignment to me when you are feeling better. I have

found that if you go to the profesors office hours then they see that you

are making an effort and they will give you all the time you need. I find

that classes are my escape from how I am feeling.

I know that when you stop going to college it is very hard to go back. I

had to pull out for a semester when I was in the hospital for 4 months and

it was very difficult to get back into the swing of college life, but I did

not want to take any more time off to recover because the longer you take

off the harder it is to return.

Where do you go to school? -I go to Brandeis University and here there is a

dean that is charge of assisting people with any type of dissability or

problem that might hinder them academicly - You might want to check and see

if your school has someone with that position.

Also some colleges offer reduced course load options of they will take away

your work-study and give you equivalent grant money if u are physically

unable to work (This will probably be a fight with the financial aid office,

but it is one that is possible to win!)

I hope something that I said helps, remember there are always incompletes,

which allow you to finish the course work usually a month or two into the

next term.

Don't give up with School!!!

Good Luck!!

-a

[Guest guest]

Dear Kara,

It is very frustrating and confusing when a person is first faced with dealing

with many of the complications of chronic pancreatitis, but I think you need to

allow yourself more time to understand the disease and the different

treatments available to treat it before you throw in the towel.

If I remember your story correctly, you were just diagnosed in December, less

than three months ago. You need to realize that for many people, they went

for years before they were diagnosed, and during that time, they were

working, going to school, or at home raising children all during the times while

they were experiencing the symptoms of chronic pancreatitis. It's just so early

in your case for you to be feeling as though this is going to bring such drastic

changes to your plans and to give up, so to speak.

As for receiving Social Security Disability.....there's absolutely no guarantee

that you are eligible at this point, nor is there any guarantee if and when you

would get it. Firstly, you would need to know if you have been continually

employed the required number of years to acqrue enough credits to apply.

You should be able to determine this by reading the Social Security

Statement that is mailed to eligible employees every two years. If you haven't

received one of these statements, chances are that you haven't yet received

the required number of credits through employment to begin receiving the

statements automatically every 2 years. Secondly, you would have to have all

the doctor, hosptial, specialists, lab and radiology reports documenting the

history of your illness, and your doctor(s) statements supporting your total

disability. Once you had all the necessary documentation, you can apply.

The application process can take two or more years, and most applicants are

turned down on their first application and have to appeal one or two more

times before they can get to a judicial hearing.

To give you myself as an example: I was diagnosed with Chronic Pancreatitis

in April of 200. I saw two doctors every month for my CP treatment for the two

years before I applied, and I still do. Two years after my diagnosis, I applied

to

SSDI in May of 2003 with diagnosed Chronic Calcific Pancreatitis with

Pseudocysts, Type 1 Insulin Dependent Brittle Diabetes with Hypoglycemia

and Hyperglycemia, Diabetic Ketoacidosis, Osteoporosis and Malabsorption

(Malnutrition). I was denied on that first application in August 2003. I

appealed in September 2003, and was denied again in March of 2004. I

appealed again immediately, and did not get my judicial hearing before a

judge granted until January of 2005. I was finally awarded benefits, but only

from the date of April 2003 forward, and I won't get my first payments until May

or June of 2005. The whole process from orignial application to payments

received will have been more than 4 years! So I would ask you not to throw

all your eggs in a basket and expect that Social Security will quickly come to

your aid, because it would be highly unlikely at this point.

You need to establish yourself with a good Gastroenterologist who can do the

necessary testing to determine the precise cause of your CP. That doctor will

also set you up on a treatment plan designed to help you control your pain,

which will include a special low fat diet, necessary pain medication and

possible surgery or ERCP procedures. If it can be determined that stenting

would help your particular situation, arrangements would be made for that. If

you have a gallbladder and it could be causing problems, it would be

determined whether removal of it could allieviate some of your problems.

Everything possible would be done to put you back into a position where

you're able to function as well as possible, so that you could and can resume

your normal activities and lifestyle.

While CP is a progressive disease, it moves at a different pace for each

person, and some people have had it and been very productive in the

workforce for their whole lives. Other's haven't been quite as fortunate, but

most have worked for several years, AFTER diagnosis, before their

impairments became so disruptive that they had to go to part time

employment or stop work all together. It has only been the rare, totally

disabled patients who've had extensive hospitalizations with other organ

impairment and/or failure who have been considered disabled within the first

year of their diagnosis.

You're too young and, from what I understand, still not under specialized

medical treatment following the standard healthcare regimen for CP, to be

giving up the ship so soon. In my opinion, I think you need to get your

appointments with the specialist out of the way, and under his or her regular

guidance, before you start to think that your whole life is coming to a halt and

that you won't be able to continue on as you planned.

There's a whole lot of positive things that can happen, and do, once you find a

good specialist who can care for you and help you get your life back on track.

Give this doctor a chance to do so, and you may find that the cup's half full,

not

half empty. Your attitude will be the key to making this work for you, and if

you

continue to feel despondent and depressed about it, you need to discuss this

with your doctor, also. They can help you with that, too. Good luck, and let

us

know what the doctor has to say.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

Southeast Rep., PAI

Note: All comments or advice is based on personal experience or opinion,

and should not be substituted for professional medical consultation.

Kara wrote:

>I finally have reached a point of peace and acceptance that my life has

changed and with it all my hopes and dreams. I have finally accepted that I

will not finish school or get my degree and that I may need to move in with my

parents and lose my apartment and everything in it.

(snip)So I met with my worker, told him I was disabled now and intended to

apply for social security disability. No problem right?

(snip)Well, I had asked my Dr. for note of some sort to pass on to my

worker verifying that I am unable to hold down a job. I went to pick

it up and drop off the specific form that the county requires in order to excuse

me from working. So the note she signed excuses me from work & school

until Mar 21. What am I supposed to do with that?!? I have been under the

assumption that my cp is progressive and is only going to get worse not better

as the damage accumulates.