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#1 quiltfairy

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Posted 12 July 2015 - 01:13 PM

I know that a lot of us have a lot of pain and sometimes I get very frustrated with it. Today I sat and wrote a poem about it anyway; I am in a poetry class once a week, so here is my poem I am going to present this week:

It is called A Dream.

I had a dream I awoke with no pain, no hurt, but it was just a fleeting dream
What would I do?
How would I live? It has been so long, so many years
It seems it will never come to an end
I feel as though I would not be able to live without my pain
Pain has become my best friend. It is always there, never leaving me alone, never going away
Like others have done.
They seem to run when things are not perfect or up to their expectations
So I guess pain can always be relied on.


If others would like to add to it or have their own writing about their pain please add it.



#2 Joelf

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Posted 12 July 2015 - 07:32 PM

Hi Quiltfairy,

 

What a lovely poem; so heartfelt and thoughtful.  Thanks so much for writing it. :thank-you: 

 

Unfortunately, poetry writing is not really my forte (I'm afraid I'm still at "the cat sat on the mat" stage! :wink:) although I can appreciate a thought provoking and moving poem. However, I'm sure we will have other members who would like to post their thoughts and poems.

 

Best wishes,


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#3 Margaret

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Posted 13 July 2015 - 12:41 AM

Hi Quiltfairy.....lovely poem.  It does bring to my mind, though, what is the pain?  What IS Gareth dealing with on a daily basis?  I tell his rheumatologist that Gareth is always saying * I hurt * but can't tell me where, how bad, etc.  Is it a dull, constant, aching pain?  Is it an occasional sharp jabs of pain?  He takes Etodolac twice a day, along with Tylenol (2 x 1000 mg) whenever he's really bad.   I ask the rheumatologist about another pain regiment and he says to stay the course.  I measure his pain level by the amount of *ticcing, twitching, facial contortions, etc).  He's been on Plaquenil (200 mg/day) since diagnosed.

 

Once again, thanks for the insight.

Take care, Everyone.

 

Margaret

Mom to Gareth, 27 years old, DS/ASD



#4 quiltfairy

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Posted 13 July 2015 - 09:29 AM

Margaret,

It must be hard dealing with pain when you don't even know where it comes from. My doctor has put me on a pain pill that does make it dull most of the time. Gareth may be subject to the weather like I am; when a storm is coming I can hardly move it hurts so bad, so I wind up taking a pain medication that has been prescribed for such situations. Like right now we have a storm front moving in and my hands are aching but I also know that when the front finally gets here and goes past I will feel better. Maybe Gareth feels the same thing and you could follow weather patterns that might help you understand his pain a bit better?

#5 Eoinok

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Posted 13 July 2015 - 01:53 PM

Hi Quiltfairy.

 

I like your poem. That's not at all how I feel about pain. It's definitely an enemy for me and not a friend. But your take is interesting. 



#6 Shelley Ensz

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Posted 22 July 2015 - 06:41 AM

Hi Quiltfairy,

 

Thank you for your interesting poem about pain.  I also think of pain as more of a constant companion than as an enemy of any sorts.

 

I've actually had some moments without pain that I have found a bit startling, sort of like, what's wrong, and also, oh my goodness, that medication dose must be too high for me right now!  That's because I think a bit of pain is good for me; and the goal for pain medications is just to keep it to a dull roar, not to eliminate it entirely.

 

I also like to talk to my pain, as acknowledging it in a friendly an accepting way seems to diminish it for me, but when I rebel against it or complain, it seems to worsen. I know its very odd to welcome pain as if it is an old friend, but really, if its going to be there anyway, regardless of our attitude, why not make the best of it?

 

Plus usually there is a message in it, like, oh boy, you sure did overdo it yesterday, next time you should pace yourself better!  Or, no, sorry, I'm just not up to that activity today, could we read or take a nap, instead?  Or even, wow, I always hurt more whenever I'm around this person, why is that, is it the chair in the restaurant we go to, or is it their relentless harping about things that cannot be changed or that they have no intention whatsoever of changing?

 

Also, the best treatment for me is to find absorbing activities to lose myself in, and in the process, lose awareness of pain for a spell. So it has driven me to take up many hobbies and to always say "yes" if someone suggests anything fun that I might be able to do, calculating that the adventure itself is going to reduce my pain level by at least half.

 

I didn't always feel this way, of course, but I think it's normal to go through stages such as being angry or resentful about pain or illness with many ups and downs until we eventually just deal with it, both physically and emotionally. And writing poetry about it is one fine way of dealing with it, if you ask me!

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#7 quiltfairy

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Posted 22 July 2015 - 07:40 AM

Yes Shelley, I do my best to stay busy with something; I make quilts and then I quilt most of them myself. I can truly absorb myself in them and I also make other items. I tell people to give me a piece of material and it will not go to waste. The family loves that; they get home made items for holiday and birthdays but like you say some days I just sit and watch TV or nap.

 

My doctor says I have a great attitude about all that is going on; I tell her that is what keeps me going and I am not going to just lay down and die.

 

The poetry is from a class I take; I drive 40 miles once a week to the class and I will continue to share ones that have to do with the illness.



#8 Amanda Thorpe

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Posted 05 August 2015 - 12:50 AM

QF,I find writing about this disease extremely cathartic. It enables me to share my story and when people respond, to see how they manage. Keep up the good work!

Take care.
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#9 quiltfairy

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Posted 05 August 2015 - 09:44 AM

Here is a new poem   

                       No Idea                                               

 

I had no idea nor did I want an idea

But everyday I ask why 

No answer comes

Is it because I was a bad girl or is it because I am me 

There is no answer and there will never be one 

for it is 

Just because.



#10 Joelf

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Posted 05 August 2015 - 09:57 AM

Hi Quiltfairy,

 

Thanks so much for the lovely poem. :thank-you:

 

Best wishes,


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#11 quiltfairy

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Posted 05 August 2015 - 12:57 PM

Thank you, Joelf.

#12 Amanda Thorpe

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Posted 06 August 2015 - 04:47 AM

QF, your poem is really nice but I don't get it. Naw, I'm just playin' with ya!

At college, I took creative writing and the above review was common, especially to what I wrote! Eventually we banned use of the word nice and anyways, how do you know it's nice if you don't get it! Duh!

I stopped writing for years because I was no longer unhappy, miserable actually, but then started again when I became ill. However I am now as far from miserable as a person can be! I think I have a fabulous life! I now know that writing can come from experience as well as pain. Bummer, I qualify for use of the descriptive word "experience " in reference to myself which is a polite way of saying, at 47 I am too far away from 30 to be inexperienced. Oh well.

Thank you QF.
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#13 Amanda Thorpe

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Posted 06 August 2015 - 05:00 AM

QF have you considered submitting your story to the site?

It's actually how I ended up here. Then Shelley enslaved me and I have to be here for like eternity or something. Then I had to bring in fresh blood but could only find Jo. Oh I'm hilarious! Really I love you two, being here's a privilege for sure.

Take care.
Amanda Thorpe
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#14 Joelf

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Posted 06 August 2015 - 06:07 AM

 ".............Then Shelley enslaved me and I have to be here for like eternity or something. Then I had to bring in fresh blood but could only find Jo. Oh I'm hilarious! Really I love you two, being here's a privilege for sure."

 

Haha, Amanda, very droll!! :wink: :lol:

 

I'm so glad you did find me!! :thank-you: :happy:


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#15 Sweet

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Posted 06 August 2015 - 06:19 AM

That was beautiful !  I'm a writer, poet and published author of two books of poetry, so I really enjoyed yours. Thanks for sharing. 


Warm and gentle hugs,

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#16 Shelley Ensz

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Posted 06 August 2015 - 08:03 AM

Amanda, darling, your contract is not for eternity! You know we can't get enough of you, or any of our other fabulous volunteers, so the fine print says eternity "plus one". I'm uncertain if that's an invitation for Michael as well, or if it stands for plus one more eternity or what.

I will send it to committee to sort that out. Which in org-speak means that you'll be waiting for the answer for an eternity....plus two!
Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.