Re: OT?- Dealing with QoL issues

[Guest guest]

Hi Steve,

It's very hard to accept that something out of your control has changed the

course of your life. What you are going through is the same as grieving for

your loss. The grief process is different for everyone and because you are

young you haven't had to deal with much grief, I don't think, but if you have

then you recognize some of the emotions.

Talking to a therapist or joining a support group through your local hospital

might really help you. I know you are here because you need the support.

I can tell you that you can learn to enjoy life and make goals for yourself.

Nobody knows what is in store for you, but your heart tells you to help people

and I know that is exactly what you will do.

Jennette

[Guest guest]

Steve M wrote:

> I turn 21 in just over 1 month and I am on disability only, which is more

depressing that I can put into words. I miss working so bad. I hate that I can't

contribute to the world. The stigma of people on disability doesn't help me to

deal with everything either.

>

> Part of me knows that my dreams are not going to come true, but part of me

just refuses to let go and move on.

>

Steve -

Welcome to the group, although I'm sorry for the pain that brought you here.

First, you are an extremely articulate - and obviously intelligent - young man.

It's clear to me that, although your physical ailments may keep you from

pursuing some career paths, you have a lot to offer the world. It's going to

take some imagination, but I'm certain that you can find a way to contribute

productively, and you sound up to the challenge.

Yes, it absolutely STINKS that you've been forced to go through this, especially

at such a young age. Nothing could be more unfair, more tragic. But the truth

is that everybody, even those without any physical problems, is forced to let go

of some dreams and accept change they don't necessarily want. Change happens -

it's not good or bad, it's just change. It's what we choose to do with it that

counts. Remember that even though it may not feel like it at the moment, you do

still have choices about how you will live your life each day.

So, if you're called to help people, then find ways to use your intelligence and

capabilities to help. For me, helping to moderate this support group is one way

that I take my mind off my own situation and reach out to help others. Maybe

you could do something similar by starting a support group specifically for

young people who suffer from chronic pain, either online or in person in your

own home town. You write so well that you could become an advocate or

spokesperson for those in chronic pain - educate yourself even further on pain

issues and do a letter writing campaign to your Congresspeople, for example, to

support the Chronic Pain Bill that has been introduced. Go to the American Pain

Foundation's website (www.painfoundation.org) and go to their " Get Involved "

page to see all the ways that you can become involved there in advocacy for pain

patients. They need people to serve as spokespeople to the media, to work with

their legislative efforts, to help run regional groups. Most of this can be

done right from home, from your computer or telephone.

If you don't want to focus on pain issues, then find a cause that you can be

passionate about and challenge yourself to make a difference. I read for the

blind once a week at our local NPR radio station, reading the local and regional

newspapers over a special radio subfrequency that goes to the folks who have

qualified for a receiver that picks up the signal. I love animals and volunteer

for our local no-kill shelter. I can't do a lot of the physical work, so I'm

using my skills to help with their publicity and fundraising efforts. There are

organizations that need people to serve as penpals to American troops serving

overseas in war zones to raise morale. You could volunteer to be a " big

brother " to a young boy without a male roll model with the Big Brothers-Big

Sisters organization - they are desperate for responsible young men to serve as

mentors to boys. Take your pick! There are hundreds of opportunities for you

to contribute and make a real difference, in the life of one person or in the

lives of many. You just have to reach out and do it!

Remember: You may not achieve your goal of being a doctor one day, but you have

a LOT to offer the world. None of us know how long we're going to be here, so

we just have to enjoy every day, one day at a time. Find something new to

capture your passion and to challenge your mind, and it will be easier to let go

of those dreams that just aren't realistic right now.

And if you're not already in counseling, or you've tried it and didn't think it

helped, ask your doctor ASAP to help you find someone experienced in managing

chronic pain. Not all therapists/psychologists are educated on this particular

challenge, so you need to find a specialist. But once you find the right

therapist, it will make a huge difference. This is a difficult process for

anyone at any age, and we all need some guidance in working through the grief

and depression that chronic pain causes, not to mention a safe place to vent

some of your mental pain and frustration. An experienced therapist (preferably

one trained in Cognitive Behavioral Therapy - look it up online to learn about

it if you don't already know it) can offer you specific tools to help with the

depression and even to help manage your pain so it doesn't dominate your life.

Once you start taking control of your life again and living it on your own

terms, you're going to feel much more optimistic about your future. You do have

a great future ahead, I'm just sure of it. It may not be exactly the future you

invisioned, but as someone a good bit older than you and thus with lot of extra

years under my belt to observe life and people, I can assure you that NONE of us

get the future we envision. Life takes us down different paths than we can ever

plan for. The key is to realize that even though there is a lot out of your

control, there are places where you DO have the control to make some choices.

So embrace those opportunities and make the decisions that are going to lead you

in positive directions, then stride down that new path with enthusiasm and

conviction!

If all this sounds far too optimistic and utterly impossible to tackle, then

that's an even stronger sign that you need to seek more help from a therapist.

Depression is truly evil in that it traps us into thinking we have no options

and leaves us with no energy or motivation to find our way out of its trap.

You've taken the first step by reaching out here, that's a great sign.

I hope this helps. Hang in there and keep posting. We'd love to hear from you

and hear how you are doing.

Cheryl in AZ

Moderator

[Guest guest]

>>>>Chemo is useless for this kind of tumor. The tumor could kill me in 6

months, it could kill me in 40 or 50 years. My doctors had been watching it

every 6 months.

About a week ago, I found out that there is a new lesion according to my newest

MRIs. It exhibits no mass-effect (not a tumor, like the glioma). I most likely

have some form of demyelination. The majority of my doctors are thinking MS

(multiple sclerosis).

You have big problems but you also have time that you are not using because

you've decided to put a death sentence on yourself. I have a friend who survived

glioblastoma and surgery for it. He was one in 5. But he fought and won/

You have no idea if you will be winner or loser in this or how long your

lifespan will be. But neither does anyone else. I was 2 months away from dying

last year but now have a long time thanks to my liver transplant. Or I could get

hit by a bus. You just don't know and neither do I how things are going to play

out.

But if you quit it's over before you start.

You may have to adjust your goals but how about social worker or similar? Or

whatever you feel you can accomplish.that interests you.

Carolyn Eddy

" Sweet Goat Mama "