Re: Introduction

[Guest guest]

Hey

So ruffly translated, your a rocket scientist? Welcome! The initial diagnosis and early weeks and months can be rough. Take heart, it is a slow disease and you have time to educate yourself. There are great newsletters available at

PSC Partners.org. Lots of members here have much experience to bring to bare. There is also a great library maintained by located at http://www.psc-literature.org/wwwres.htm. Write as you can, and fire away!

Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL krmpotich@...

Introduction

Hello,

This is my first time on the board here is something about me

Name:

Age: 30

Disease: UC (1991), PSC (2005)

Married (05/29/01)

2 kids 1 year (12/28/04), 4 years (1/19/02)

Occupation: Aerospace Structures Design Engineer

I was just told by my doctor 12/23 that I had PSC after having a reddish urine for about a week and fatigue for the last month and having a horrible yellow tan. Today during my ECRP, my doctor confirmed it. I had one stint installed as well as several ducts ballooned open.

One fear I have is that beside being told I have PCS, I was only given a brief explanation of the diseased Friday and even less today by the doctor performing the ECRP. I was especially concerned that I was not given any look forward diagnosis (i.e. how often could I except to have an episode).

Because of this I was left searching the web for information (which made for a not so pleasant Christmas for my family).

All in all the saying goes, God does not give you which he does not think you can handle.

Thank You for listening,

[Guest guest]

Welcome! This group is a great resource. I'm glad you found us, but sorry

you needed to. Your story mirrors so many of ours. I wish I could write

more, but I'm fighting off a major BTP (breakthrough pain) flare and my

doctor stopped writing for the Actiq since the FDA instituted the new REMS

program, so I had to take a sedative to knock myself out before the pain

kills me. Hopefully the sedative lasts long enough that the flare is over

by then. I just wanted to welcome you before I signed off.

Steve M in PA

On SSDI, fibromyalgia & cancer pain

> zekersdp wrote:

> I would like to introduce myself since I am a new member of this group.

[Guest guest]

Welcome Zeckersdp, I too suffer from serious nerve pain that I got from a

construction accident in nineteen-nintyfive. I user ice on my affected area's.

 It helps to kill the nerve pain for several hours, it actually deadens the pain

in those affected area's. I use it on my neck just so I can fall asleep at

night, I use another ice pack on my Lumbar spine throughout the day and night.

The nerve pain there is caused by spondylolithesis,or a slipped disc over the

next disc. I have thirteen herniated disc's in all. Four in my neck with bone

spurs at all four levels. Six levels in my thoracic spine,

upper back to mid back. and last but not least , three in my lumbar spine.

I take several pain and nerve pain pills every day. All my prescriptions total

fourteen pills, though not all for pain and or muscle relaxers,only one taken

for muscle spasms, three times a day. Pain killer four times a day,I take lung

medications too.

/ NY

[Guest guest]

Hi, zekersdp! (Do you have a 'handle' we can call you?)

All of us here are in pain some of the time, and some of us are in pain all of

the time. I can tell you it never gets easy to live with pain 24/7, but it does

get possible. We try to stay as active as we can, create and maintain

friendships, just keep going day to day. If you ever watched the cartoon

" Finding Nemo " , there is a ditzy fish called Dory whose motto is " just keep

swimming " . I always wanted a T-shirt that says that.

Please keep reading and writing with the group; I am sure you will find us all

a great support.

Hang in there! - in New Mexico

[Guest guest]

Hello Zeke, Sounds like you've been through the same sort of thing many of us

have.  Lack of insurance, helping ourselves more than doctors can or will.  The

best thing I did for myself was seeking help for my mental state.  Depression,

unable to cope with the chronic conditions.  Nice thing is in the US if you

don't have insurance and don't have much of an income, mental health can be

free.  I went to my county mental health clinic and got wonderful care for

almost 2 years.  Lots of weekly talk visits and group therapy for both chronic

pain and depression.  The one thing we all had in common and it was good to see

other people and discuss what brought to where we are.  It was empowering.  I

found me again, a different me, with chronic illnesses.  Not the same me I was

many years ago. 

I think you are on the right track.

Jennette

> zekersdp wrote:

> I would like to introduce myself since I am a new member of this group.

[Guest guest]

--- Yes, my name is Destiny. The name I have posted by is my dog's name with my

initials. You seem like a positive person. That is inspiring and how I want to

be.

[Guest guest]

Wow, that is a lot of medication. On my health plan they tend not to give

painkillers. They have given me neurontin which does take the edge off but not

enough in my opinion. I have found that taking long hot showers helps, for a

while. But I imagine ice would help too. I will try that. Thanks

>

[Guest guest]

I take 15 Methadone a day, 5 Morphine, 3 1/2 Xanax.

Before I started taking this medication, I gave up my house, my friends, my job.

I moved to where I could be closer to my family. (I was pretty-much unable to

walk)

My doctors did not believe in giving very much medication. I am sure glad that

my doctor now gives me this medication. I still have lots of pain but I have

some life. P.S. I take 3 Neurontin a day. It does nothing for me.

Non-text portions of this message have been removed]

[Guest guest]

Jeanette: I have medicare so my medications for the Depression that goes with

Chronic Pain is free. I have a pain doctor so I do have a certain amount of the

right medication (Opiods)

I see my psychiatrist once a month. I talk to him for about two minutes (no

exaggeration) and then I'm out of there. My pain doctor does just a little bit

better.

After reading your post I realized how heartless my medical and emotional care

is.

My pain doctor is unhappy with me because I won't accept a pain pump. It's my

choice. He kind of bullies me to have a pump put in me.

>Jennette wrote:

>Lots of weekly talk visits and group therapy for both chronic

pain and depression. The one thing we all had in common and it was good to see

other people and discuss what brought to where we are. It was empowering. I

found me again, a different me, with chronic illnesses. Not the same me I was

many years ago.

[Guest guest]

Hi in New Mexico,

I have Chronic Pain 24/7. It is not easy but I like your nemo quote " Just keep

swimming "

from California

[Guest guest]

Sometimes the only thing you can do is knock yourself out before the pain gets

too bad. I use a combination of morphine and xanax. or methadone and xanax. (I

am very careful) I did not know other people did this!

> zekersdp wrote:

> I would like to introduce myself since I am a new member of this group.

[Guest guest]

I too used to wonder how many other people knocked themselves out to get through

attacks. When they started giving me Actiq, I stopped having to knock myself

out. It was so weird to have to start doing that again when they stopped. A pain

flare with Actiq took away 10-15 minutes, but now they take away several hours

EACH! I used to have relief in between flares and now the pain never goes down.

Opioids do not knock me out, but I have 2mg pills of lorazepam, Zanaflex (when I

increase the dose, it knocks me out), diphenhydramine, and several kinds of

sleeping pills. No one drug knocks me out reliably, but combinations seem to

work.

I am glad that you're careful (I am too).

Steve M in PA

> sioux wrote:

> Sometimes the only thing you can do is knock yourself out before the pain gets

too bad. I use a combination of morphine and xanax. or methadone and xanax. (I

am very careful) I did not know other people did this!

[Guest guest]

I have had to be careful knocking myself out with Stadol and booze. It is a

real balancing act. Now I cannot get the Stadol, I live in MO where Stadol

users are pariahs and 2 doctors have REFUSED to treat me because I asked one of

them for it.

I usually take Lyrica and Cymbalta, but I get a lot of breakthrough with those

and since I cannot get Stadol anymore unless I drive to TX. Pain patients on

narcotics tend to not get hooked, which is what the DEA and the ER do not

understand, therefore, they threaten the pain doctors so that they will not give

out anything that works. I can tell you right now without even trying that

Thoraine does not work for chronic pain. The makers of Thorazine just needed a

new place to use it because it is so bad, no one wants to take if tor being

crazy anymore.

> sioux wrote:

> Sometimes the only thing you can do is knock yourself out before the pain gets

too bad. I use a combination of morphine and xanax. or methadone and xanax. (I

am very careful) I did not know other people did this!