Re: new member intro--long (sorry)

[Guest guest]

>

> Thanks for letting me join your group. I can't exactly say that

I'm glad to be here, but I can definitely say that I'm glad that

this group exists and that there are others out there willing to

share their experiences and offer support.

>

> My name is a. I'm 49 years old, a displaced New Yorker

currently living in the suburbs of Washington, DC.

Hello and welcome to this group, I am sorry you need this group, but

when you really need to have some answers to questions, this is a

great place to get many opinions.

I have been disabled since 1995. I haven't been able to get back to

work, as I have several other medical problems too. I was diagnosed

with chronic obstructive pulminary disease while in the hospital for

brain surgery.

Talk about rotten luck,huh?

And if that weren't enough, I was also diagnosed with Glaucoma. The

good news on that, the doctor believes it was caught early, and the

bad news, my eyelashes are growing and thickening like crazy.

I know, the women in this group would just love that side effect,

but for a guy to have it, I don't think so. I've got to trim the

eyelashes every two month's or they'll actually grow so long, they

get intertwined with my eyebrow's. Dont laugh, I can feel the

snickering out there. It is totally true. The number one side effect

of Lumigan opthalmic solution is just that, it makes your eye lashes

grow and thicken.

Go to a web site that shows the side effects, and you'll read it for

yourself. Another side effect, it actually changes the color of your

eyes, my green eyes are a mixture of green and brown now.

a, I'm sure other in this group will be able to help you cope

with your disability as much as they've helped me, and I've been

here for one week.

Sincerely, /NY

[Guest guest]

sorry if i confused all of you

Sheree

[Guest guest]

Hi a -

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

Wow, you've been through the wringer, haven't you?

I went through every possible seizure med too, for neuropathy in my

feet and legs due to a spinal cord injury, and couldn't stand any of

them until Gabatril. It was a wonder drug for me - it was the only

thing that stopped the acid pooling/walking on knifeblades sensations

in my feet. I hope you have the same success. Make sure you titrate

VERY slowly up on that drug - it does have the potential to cause

seizures if you go too fast or make too big a jump in dosage.

As far as the lack of physical therapy - I firmly believe that it is

NEVER too late! Yes, it certainly would have been better to get into

PT as soon as possible after your surgery, but you could still gain a

lot from it even now.

I was completely atrophied just three months after back surgery -

another side effect of the particular spinal cord injury I have,

because the all the nerves leading to the bottom half of my body are

almost dead and are giving poor instruction to the muscles. It took

six full months of PT for me to " graduate, " and I've gone back for

shorter sessions several times since as more neurological problems

develop. But the exercises and stretches I learned in PT help me

control my pain, keep me functional and walking, and literally saved

my life. It's never too late. If you can arrange it in any way, get

thyself to a physical therapist!

As for how to want to get up and get through everyday, well, I'm sure

your kids give you lots of reasons for that! The challenge for all

of us is going through the grief process in which we finally

acknowledge that our lives have changed, but that change is not

necessarily bad. We may not be able to do the things we loved

before - so there's a huge feeling of loss - but there are lots of

things we can do that are new and they can be just as good!

It's particularly tough because just when you think you've worked

through that grief process and " accepted " it all, something comes

along to slap you in the face and put you right back at the beginning

again, doesn't it? We all go through that. It was hard for me to

realize that I was going to have to continue going through that cycle

over and over again - that I wasn't " done. " But you do learn that

you are capable of getting through it a little better each time.

And the only " advice " I can give you is to find little moments of joy

throughout your day and stop to consciously appreciate them - helping

your kids with their homework, having a good cuppa on the back porch

on a beautiful morning, a funny movie or great book, playing with the

dog, a great bubble bath and home facial, a call to a friend,

planning and executing a new hobby (scrapbooking the kids photos?

setting up an aquarium?) - whatever gives you joy.

And find something joyful to look forward to every day. The little

moments eventually do add up to a joyful life. We can't look too far

ahead without feeling totally overwhelmed, so living in the moment is

the only option.

Again, welcome.

Cheryl in AZ

[Guest guest]

a,

WOW!

I hope you never get to the point that existence is enough.

You said, you haven't worked in a year. Would working freelance,

part time, help you find that energy to move from one second to the

next?

I need to be challenged. I use to throw myself into the toughest

projects I could get. I loved to sweat when I worked, I don't mean

from physical labor, but the mental challenge my job gave me. The

problem with that now, is when I'm that stressed out my back tenses

up. I would end up on the floor unable to drive home.

I can take days finishing chores that use to get done in a few hours.

I can still see the possibilities out there. I just have a hard time

finding out how to grab them.

With your kids getting older your world will change. Those days you

feel totally alone will be the hardest.

I look ahead. I try to get out of the house. Even if its a walk in

the backyard or just sitting on the front porch.

Writing helps a lot. I have been going over the time I spent as a

switch tech , for t-mobile.. If I scratch at it hard enough I can

uncover a book or a screen play. Possibilities.

Hey, Lee Curtis just wrote another childrens book. Why can't I!

Thank you for letting me know a little about you.

Gail

[Guest guest]

......sorry if i confused all of you , Sheree.......

Sheree, Don't worry about it. With lupus and Fibro fog, I'm always

confused...lol Carol

[Guest guest]

>

> Sheree,

I confuse everyone.LOL

Gail

[Guest guest]

>Thanks for letting me join your group. I can't exactly say that I'm glad to be

here, but I can definitely say that I'm glad that this group exists and that

there are others out there willing to share their experiences and offer support

a

Hi a,

Your story was so hard to read. You've been through so much. It sure seems

like you have osteoporosis, but like you said, your bone density test was fine.

It seems like your skeleton has some kind of issues normal people just don't

have. You asked how do we " want " to go on. That's a tough one. I'm in the same

boat as you, trying to keep functional for my husband. He expects me to keep the

house going, but I feel reality closing in more and more each day. The only real

source of strength I have right now, besides my husband, who works long hours,

is church. I'd never make it without that weekly break, without that punch of

positivity. I go to the rector's forum weekly too, which is a group from the

church that gets together to read and study the Bible. It sounds so boring, but

it a wonderful outlet.

I suggest that you keep something of yourself alive, despite everything. If

you can't do things you used to, find something else that you can do. Try to

control your thoughts, too. I find that is possible. I used to let myself go

into the hole every day, but now I catch myself and stop it before it gets out

of hand. My mind naturally runs in a sad mode, but I consciously refuse to give

in to it. I guess it's just the push of trying to still be a person on a daily

basis. That's how I cope.

I've got severe ddd in the lumbar spine, advanced glaucoma, fibro and osteo in

hips and spine. Some days I do give in and realize I just can't do as much as I

want, and other days I can do more. Listen to your own body, and try to eat good

nutritious food, too. I've cut down a lot on sugar and junk lately. Soda is out.

I figure I've got to change someday and that day is now. I hope these thoughts

help you somewhat. Very nice to meet you. Joan

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