Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-09-2013, 03:16 PM #21
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And Just One More...

Love and Friendship
BY EMILY BRONTĖ

Love is like the wild rose-briar,
Friendship like the holly-tree—
The holly is dark when the rose-briar blooms
But which will bloom most constantly?

The wild rose-briar is sweet in spring,
Its summer blossoms scent the air;
Yet wait till winter comes again
And who will call the wild-briar fair?

Then scorn the silly rose-wreath now
And deck thee with the holly’s sheen,
That when December blights thy brow
He still may leave thy garland green.
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Old 10-09-2013, 03:51 PM #22
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Both of those are beautiful Renee, both in different ways...

Thanks

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 10-10-2013, 11:26 PM #23
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Default Don't You Quit

I'm sick of editing/working... I wanna play! Although I'm not talented enough to create my own, so I will share one instead.

The work you have all shared is lovely. Bram you are so talented.


Don't You Quit


When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don't you quit.


Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow -
You may succeed with another blow.


Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup;
And he learned too late when the night came down,
How close he was to the golden crown.


Success is failure turned inside out -
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you must not quit.


~Ralph Acosta
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 10-11-2013, 03:34 AM #24
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Love that poem, but never knew who it was by! Thanks Vrae, that was lovely
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 10-11-2013, 08:24 AM #25
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Sorry guys, this one's not that chirpy, but today it's how I feel, and writing it helped a bit although it did make me shed the odd tear.

Hope you are all doing ok out there. This one's for you

Bram.

Not My Best Day

If I crane my head a little, I can see a green stand of trees.
I know beyond that lies the town, the rivers, life and such bustle.
My car is crouching on the drive, and sits waiting for my key
Sunshine moves the shadows, and crisply on the lawn leaves rustle.

Autumn now bring chills and draughts, they scare me like a dragon crouched.
My blanket here is soft and warm, comforting like chocolate,
Whispering it's safer here, reassuring me, my dog slouched
Across the other sofa, makes me smile, her happy noises soft.

The tv there is on of course, but nothing on it interests me
Not even real people's lives, but something darker like grey skies
Or that noise behind you in the darkness. It's hard to watch, to see
Life as it could be, as it was, as it might have been had fate smiled.

It's grey now outside. Grey and damp and chilled like the hope it replaces.
It's hard to keep going each day, to smile again and face alone;
To stop that silent scream escaping, teaching those judging faces
About this thing, this pain, this beast, that gnaws upon my very bones

Both day and night. Night and day merge together, tied by pain like wire
Cutting through flesh. Try to explain, see confusion, even boredom there;
See dark the yawning*cloud their eyes behind the sympathetic smile.
They don't see, they can't. Who could? Except you others who know and share.*

You share it all, you see, that pain, the searing tears upon your cheeks.
You know, you see, that black black depth within us where we go to hide
When it is bad, beyond belief of what should be endured. You seek
The same relief, that gasping breath of life again, your eyes wide.

No wonder we all hope and pray and wish for the impossible.
Screens flickering with searches and dreams, fingers touch and burn there,
On keys to keep the link between loneliness and understanding.
A lifeline when being drowned in pain becomes just too much to bear.

I cannot see those pseudonyms, or know their lives and faces true,
But like the air that fills my lungs, I see them in my heart, they hold
My hand in darkness and fight with me against the fear. And the blue
Streak of dawn brings hope of sunlight, warmth at last to chase the cold.

Thank you all.

Brambledog c.2013
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 10-12-2013, 12:02 PM #26
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I cut and pasted the poem below.
I found it on the internet, but the author is unknown.
I hope you like it.

PLEASE UNDERSTAND

Please understand

that being sick doesn't mean I'm not still a human being

I don't feel well often times and I might not seem like great company, but I'm still

me stuck inside this body.

I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.

Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.

Please Understand

the difference between "happy" and "healthy".

When you've got the flu you probably feel miserable with it, but I've been sick for years.

I can't be miserable all the time, in fact I work hard at not being miserable.

So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.

Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.

Please understand

that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.

Imagine an athlete after a race. They couldn't repeat that feat right away either.

With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.

So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.

Please remember

that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.

Please understand

that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you.

In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand

that "getting out and doing things" does not make me feel better, and

can often make me seriously worse.

Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand

that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.

Please understand

that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.

It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.

Please If

you want to, you can suggest a cure to me, but please don't act as if

it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.

If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.

There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.

I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand

that getting relief from an illness like this can be very slow if not imposable.

People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

Please understand

that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.

I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.
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Old 10-12-2013, 02:58 PM #27
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That one is really good. I've read it before, and I really like it. I was going to try to find it and post here, but you beat me to it! It explains a lot of things very well, IMO. Thanks for sharing it!

I especially liked this:

"Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!". "
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Old 10-14-2013, 04:05 PM #28
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Default I am still ME

By CRPSSongbird

One day, one moment, one breath
Life changed, dreams altered
Searing, burning, numb
Dread, and fear
Dark, and lost
I am still here

Each day a struggle
outcast, and misunderstood
Bright pain, black hope
shadowed in loss
I am still here

I still breathe, I still dream
changed but still real
hurt but not quite healed
Other can't see
wretched disbelief
they can't know
But I still feel

I'm lost, but resolved
broken, but whole
Altered, yet steady
I am still ME
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Old 10-14-2013, 04:13 PM #29
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Wow Songbird, that was fab!

Thanks so much for sharing that with us....it was so sad, but strong and defiant. I feel a bit like that right now (the painful outcast blackness bit anyway ) time to find my strength again

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 10-14-2013, 04:32 PM #30
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Quote:
Originally Posted by Brambledog View Post
Wow Songbird, that was fab!

Thanks so much for sharing that with us....it was so sad, but strong and defiant. I feel a bit like that right now (the painful outcast blackness bit anyway ) time to find my strength again

Bram.
I'm sorry your having such a bad day hun! Sorry if it was a bit depressing but sometimes you can feel that way. I just have to remind myself every now and then to think past the pain and limitations and remember me Of course depending on the day easier said than done!
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