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scampie5

my poem

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I look in the mirror

And who do I see

I see some one

but she isn't me

 

my lovely eyes

that glistened and glowed

they have been replaced

and are round and small

 

I look through them

but things have changed

my skin is tight and wrinkle free

I know what you are saying

oh lucky me

i will have to disagree

 

 

my lips are thin and my mouth is small

that's not my face not at all

I used to have a smiley face

I do not remember when it was replaced

I wish they would bring my old one back

the one I had before SCLERODERMA attacked

and left me looking so unreal

oh well there's nothing I can do

 

my eyes are playing tricks again

I can not see any flesh on my feet and hands

my fingers are tight my nails have ridges and dents

I am beginning to think they have been replaced

along with my face

 

My bones well they are not the same in fact

all they do is give me pain

my body aches and I'm always tired

and my fingers and toes well they go blue

oh well there's nothing I can do

 

My lungs are in such a state they just do not want to co operate

with things I'd like to do

they're always wheezy and tight

NO I won't give up the FIGHT

 

so when I look in the mirror who do I see

I see some one she is not me

I am glad my brain is still intact

and tells me the person I see is me

but looking different than I used to be

and the person inside me well she is the same old me

 

Lynn Jarvis

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Beautiful poem Lynn. Be patient because after 5 years my skin started to soften.

 

My hands look like my mother's

Except my fingers are bent

They had started looking young

Before this disease relented

 

My mouth looks old and wrinkled

You would think I smoked for years

My eyes are dry and lined as well

And don't yield any tears

 

My organs all are damaged

And one is recently new

People say "you look so good"

I wish they only knew

 

My mind is not what it once was

I have no attention span

I'd call you by your name

But I don't think I can

 

But I'm alive and kicking

You're not done with me yet

You're stuck with me for awhile

Lest you not forget.

 

Maybe we need a poetry section...?

 

miocean


ISN Artist

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Oh Miocean, "I'd call you by your name but I don't think I can"...made me want to cry, "But I'm alive and kicking"...made me smile!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda,

I hope you were crying with laughter :) because I am really not that bad. I have lost my attention span, once an avid reader I have only been able to read 1 book completely in the past several years, and that was an autobiography of a rock star I really love. I am better reading online where I can jump from site to site or link into an article that interests me, then to my forums, back and forth.

 

I do lose people's names and facts. There have been many posts here on brain fog caused by scleroderma and medications. I also have the age factor, many of my friends complain of the same thing, and even those younger than I. I think we have so much information overload that we crash out our brain.

 

For example, I was at the end of my husband's office party a couple of days ago and there were several people I have known for years, who always would always ask how I was doing through all of this. One man is a friend of the family that I have met on several occasions recently. I had to ask my husband several times what his name was...right now I can't even remember it. :emoticon-dont-know: I had to ask my husband everybody elses name as well and we are only talking about 4-5 people. I taught 350 kids and knew all of them by name before sclero and just feel there is a correlation. On the other hand I can remember somethings vividly and my husband will ask me how in the world I can remember that.

 

Oh, well, what was I writing about? :unsure:

 

miocean

 

It concerns me as I know I am not as sharp as I was. I have to write things down and have notes all over the place. My mother-in-law had scleroderma and suffered from dementia, no short term memory, and my best friend's mother had the disease as well and had Alzheimers.


ISN Artist

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Well Miocean,

 

I once learned that the inability to remember names is called - is called - oops! I remember now nominal aphasia!! If you can remember that you have no need to worry :emoticon-dont-know: . As well - people think you are clever!!

 

Judy

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Hi Lynn and Miocean,

 

Goodness me, with these very touching and lovely poems I can see I'm going to spent the entire day in tears!! :crying:

 

Both poems are very true though and as for remembering names or even who people are......? I've quite often had people come up to me in shops and other places and I've held quite long and detailed conversations with them without ever realising who they were!! :wacko: :lol:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Perfect example, I was back at the school I taught in today and there were two women in the office, one I recognized as a parent of my students and knew her by first name. The other one works in the business office and I have known her for years and I couldn't remember her name! I faked it and gave her a big hug. Then later I passed her again and her name came right to me and I was able to say good-bye to her by name.

 

Interesting thing, you know how you go into a room and the forget why you went there...?

 

I read then when you pass through a doorway something happens to your brain that causes you to forget.

 

If we pass through enough doorways, can we forget we have scleroderma? :D

 

miocean


ISN Artist

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Great poems!

My spiritual journey has taught me that I am not my body. My soul/conscious is beautiful and will be there forever.


Kind regards,

 

Kamlesh

 

 

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Beautiful poems ladies. Yes - I think we need a poetry section.

I don't have the concentration I used to have as a teacher either. And when I couldn't turn the pages of a book properly I knew it was time to retire. Perhaps our adaptations to life with scleroderma keep us focused on that more?


Kay Tee

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Hello Kaytee

 

Yep, my ability to manage conflict, concentrate and function cognitively as I once did is very dimished. I think it's a combination of the disease, pain, fatigue, medication and lack of daily structure. What a winning combination.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Yes ladies, great poems.

 

Good touch too Kamlesh!


Sending good wishes your way!

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