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Old 08-19-2010, 12:16 PM #11
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Originally Posted by Sarah Mae View Post
use the elementary education degree I worked so hard for 6 years to get...

go rollerblading

take a road trip with the music blaring across the country

get out of this bed =)
Have you at all had any luck with using a walker?

Could you do some kind of online teaching? Could you work with kids that have a handicap...maybe volunteer an hour per week to get you out of the house?
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Old 08-19-2010, 12:51 PM #12
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How about if we ride a bicycle built for 10
to the nearest elephant shelter and have a elephant ride and then,
while wearing fancy underwear, sipping margaritas
in our camel back
hydration pack
we wander off the beaten track?

We can run across the nation,
hitting each restroom in every gas station.

One step at a time,
staying in spas for a dime,
getting a massages to boot,
then learning to play the flute.....
or eating luscious fruit.

No boring or burning,
No wishing or yearning,
We will peddle gray ribbons
And pet friendly gibbons,
And smile for the press,
Looking good as can be,
While doing philanthropy,
for Neuropathy!

We can star in a movie,
bout how we got groovy,
bout how heroic we be,
Sandra Bullock plays me,
Oh, thank you for fantasy....

If only I did not have neuropathy.......

Rrae....can you add your emoticons...we are on a roll......
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Old 08-19-2010, 01:05 PM #13
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Originally Posted by cyclelops View Post
Have you at all had any luck with using a walker?

Could you do some kind of online teaching? Could you work with kids that have a handicap...maybe volunteer an hour per week to get you out of the house?
I have used both a walker and a wheelchair. The pain isn't the problem. There is blood pooling in my legs when they are not elevated (thus, I am bedridden). My legs turn dark purple (almost black) and there is intense pressure and pain from the blood pooling. Until that can be figured out and fixed, I am stuck in bed except to go to the doctor. I can't even get to church anymore... to volunteer is not an option with the pooling and the pain. And all of it has affected my concentration and memory so much that between that and being flat on my back in bed, I doubt I would be able to do anything online. It's very hard to type flat on your back.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-19-2010, 01:22 PM #14
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Ah, I see. So your blood vessels are not getting innervation or not responding to signals. So, besides the pooling, I imagine you get very woozy and feel like passing out.

Now I understand why you are stuck in bed. Did this happen AFTER your gastric bypass?
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Old 08-19-2010, 01:42 PM #15
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Lesley -

Love your elephant pic.

Actually, I did ride an elephant once in a parade. Thought I was going to be horribly bowlegged for the rest of my life.

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Old 08-19-2010, 03:53 PM #16
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Originally Posted by cyclelops View Post
Ah, I see. So your blood vessels are not getting innervation or not responding to signals. So, besides the pooling, I imagine you get very woozy and feel like passing out.

Now I understand why you are stuck in bed. Did this happen AFTER your gastric bypass?
Indeed. The pain wouldn't keep me in bed. It may prevent me from teaching in a classroom and standing for 8 hours a day... but I'd at least be up and moving around...even if only in a wheelchair. Unfortunately, nobody can figure out how to help me with the pooling and therefore I remain stuck in bed.

Yes.. I had the surgery on August 13th (2009) and the neuropathy pain started in December.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-19-2010, 04:37 PM #17
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Oh SarahMae, how frustrating, to have had this surgery to try to get better and end up with this!

I would love to make this better for you in real life, but I can't....so, how about you join me on my bicycle for 10, and you don't need to pedal.....

I am sure somehow, some one will figure this out....in the meantime, I am sure your blogging about things will help a lot of people gain perspective about their own lives.
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Old 08-19-2010, 04:47 PM #18
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Originally Posted by cyclelops View Post
Oh SarahMae, how frustrating, to have had this surgery to try to get better and end up with this!

I would love to make this better for you in real life, but I can't....so, how about you join me on my bicycle for 10, and you don't need to pedal.....

I am sure somehow, some one will figure this out....in the meantime, I am sure your blogging about things will help a lot of people gain perspective about their own lives.
It is indeed very frustrating! However, I'm learning that almost everyone on this site is just as frustrated as I am--just about different things. So at least I am in good company!

I'd love it if you (or me or anyone!) could make this better too... but for now I guess I will just have to be patient and wait... and hope that someday, someone out there can figure it out.

Until then, I'd LOVE to ride on your bicycle... and that's great about the pedaling, because the front half of my feet are so sore and numb that I wouldn't be much help anyway! haha Gotta learn to laugh or this would all be so incredibly depressing.
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♥ "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth ♥

My name is Sarah and I am 25 years old. I have a lot of chronic health problems. Peripheral neuropathy and POTS (postural orthostatic tachycardia syndrome) keep me bedridden the majority of the time. I also struggle with degenerative disc disease, disc desiccation, spondylolisthesis, arthritis, polycystic ovarian syndrome (PCOS) with insulin resistance, allergies, sound sensitivities, and other health problems.
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Old 08-19-2010, 04:53 PM #19
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Lesley -

Love your elephant pic.

Actually, I did ride an elephant once in a parade. Thought I was going to be horribly bowlegged for the rest of my life.

Sheltiemom

WOW, you rode an elephant! I would need a xanax to do that. LOL
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Old 08-19-2010, 06:13 PM #20
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Default Buy a pair of Red High Heels!

Oh Cyclops I loved Loved Loved your poem!

I would wear a pair of red high heels and march in front of the bicycle built for ten with a bataan!

I would run with my Grandchildren and swim every day.
I would hike the Sierra mountains again.
I would take my grandchildren camping and fishing.
I would throw out all this medication and wake up with a clear head every day.
I would wake up every morning and run 6 miles like I used to!

Oh, if only I didn't have PN! My life would be sooooo incredibly different!

Instead, I am where I am. Old before my time, fatter than I should be, sitting on the sidelines like a zombie because my meds make me that way.
But we are here, with our sarcastic attitudes and our memories of life before PN. Like old people in a nursing home watching out the window, remembering what life used to be. Living inside our own minds, knowing we will never be those healthy, energetic, carefree people again.

I don't know if I like this exercise. It made me happy for a minute, then made me mad. Mad that I'm stuck inside this retirement home looking outside the windows and watching life pass me by!
O.K. bring on the elephants!
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