Re: pain all returned - Tonni

[Guest guest]

thank you...i have read these sites..but this was different, this was not just a good day, but almost 2 full weeks of beyond great days...days I thought I would never see again...I know you said you have o take oxy, but I was just excited a doc listened, then saddened that they perscribed something I had already tried and it didn't even work...but notice my surprise when afte rone dose, I cleaned my whole house, something I haven't done for over a year...then I expected to drop in pain for a day or 2 but I didn't, no pain a all, even durign my monthly, when it is usually completely down and doing nothing...this was different..but it was too short lived...but it does give me hope that soemthing can be found to give me back my life....just what and when will we find it...but this is pretty quick to become tolerant, or at least it seems to be???

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else

this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair

I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains

I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

[Guest guest]

Tonni,What you are feeling now very well could be a rebound from those 2 weeks of feeling good and overdoing it.  Maybe if you take it easy and rest up those good days will come back..  This could just be you hurting from overexertion.  We have all done it.  Rest up and see what happens...  sound good?

Hugs,TeriOn Sat, Jan 29, 2011 at 9:52 PM, Tonni Brende <tbrende7@...> wrote:

 

thank you...i have read these sites..but this was different, this was not just a good day, but almost 2 full weeks of beyond great days...days I thought I would never see again...I know you said you have o take oxy, but I was just excited a doc listened, then saddened that they perscribed something I had already tried and it didn't even work...but notice my surprise when afte rone dose, I cleaned my whole house, something I haven't done for over a year...then I expected to drop in pain for a day or 2 but  I didn't, no pain a all, even durign my monthly, when it is usually completely down and doing nothing...this was different..but it was too short lived...but it does give me hope that soemthing can be found to give me back my life....just what and when will we find it...but this is pretty quick to become tolerant, or at least it seems to be???

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

 

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

 

almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else

this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair

 

I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people  have my same pains

I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

  athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

[Guest guest]

TonnieYou really must have huge difficulty with your handicap child. I'm feeling for ya.Something that I was forced to do about my health, was literally realize that I was grieving the loss of it. At the time that I came to see this, I was in a resentful stage. However, just as I finished working on the 5 stages, I had a whole new thing handed to me. It was the clinical trial that I participated in, in 2009. That in itself caused a whole new set of problems and health issues. Also, this past year, 2010, my whole life has been dumped upside down.However, one thing that I am grateful for, is that I don't have Hep C any longer. Yup, I still have Fibro; but, I've pretty

much learned what I can and can't do. Even silly things like running down the stairs or going shopping at Walmart (need rest stops). I've learned to be very careful about my footsteps. It will only take one little misstep and I'll be back in pain for days.Gloriahank you...i have read these sites..but this was different, this was not just a good day, but almost 2 full weeks of beyond great days...days I thought I would never see again...I

know you said you have o take oxy, but I was just excited a doc listened, then saddened that they perscribed something I had already tried and it didn't even work...but notice my surprise when afte rone dose, I cleaned my whole house, something I haven't done for over a year...then I expected to drop in pain for a day or 2 but I didn't, no pain a all, even durign my monthly, when it is usually completely down and doing nothing...this was different..but it was too short lived...but it does give me hope that soemthing can be found to give me back my life....just what and when will we find it...but this is pretty quick to become tolerant, or at least it seems to be???

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

F

HT---

almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else

this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair

I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains

I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

[Guest guest]

I know you are only here to help. And I totally appreciate ally ou have gathered to help us. I scanned over what you sent and book marked a bunch and printed some other. But truly, learnign the basics there thru scanning and then the whole tumor marker thing really scared me and I stopped before I mentally went too far.

I am going to request they go straight to a bone marrow test, as I feel that is what is needed, but with no insurance at a by your incoem hospital, who knows.

I have not applied for disability, for I have no disabling diagnosis yet, just almost 2 years of pain. I stay home and care for my special needs son who is a 12 year old quad. I need my arms and legs. I thought about applying, but thought you had to have a diagnosis first????

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

I believe and could be very wrong; but, Fibro is not joint pain although that's where it always seems to emanate from. I believe that Fibro affects the tendons and things like that. That's why you feel it in your bones. I do get those spots of pain your Dr. was talking about. But, it's not an every day pain in the same place. It jumps around and then you can have good days and then the days that you don't want to get out of bed. So, your Dr. didn't find it because it wasn't there at that time. Even when I drove 3 hrs down to a larger city, I figured for sure the Fibro would be screaming from the drive. Nope - no pain except when he had a hold on my ankle and pushing my leg up, where his fingers were then

screamed.

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[Guest guest]

thank you Don...truly appreciated

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

I believe and could be very wrong; but, Fibro is not joint pain although that's where it always seems to emanate from. I believe that Fibro affects the tendons and things like that. That's why you feel it in your bones. I do get those spots of pain your Dr. was talking about. But, it's not an every day pain in the same place. It jumps around and then you can have good days and then the days that you don't want to get out of bed. So, your Dr. didn't find it because it wasn't there at that time. Even when I drove 3 hrs down to a larger city, I figured for sure the Fibro would be screaming from the drive. Nope - no pain except when he had a hold on my ankle and pushing my leg up, where his fingers were then

screamed.

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Hi Tonni

Why a AFP test?

Are you pregnant or do you have cancer?

Your going to have to help me with this one - my bulb burned out.

love

don in ks

now my pain seems a bit different...mine is not topical but inner bone from the butt down and from the elbows down...my hands and feet are always in pain and the more you use tem the more they curl up and don't want to work and then it feels like the muscles and boes are also trying to curl up and almost fear they will break if used...

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

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I have no idea why...tubes tied 12 years ago and never told anything more than late satge2 hep c???????

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

now my pain seems a bit different...mine is not topical but inner bone from the butt down and from the elbows down...my hands and feet are always in pain and the more you use tem the more they curl up and don't want to work and then it feels like the muscles and boes are also trying to curl up and almost fear they will break if used...

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

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Don, my doc runs that too.. kinda normal for a woman who has had or has hep c.  It tests for liver cancer and ovarian cancer.  On Tue, Feb 1, 2011 at 1:10 PM, Christ <ludichrist2000@...> wrote:

 

Hi Tonni

Why a AFP test?

Are you pregnant or do you have cancer?

Your going to have to help me with this one - my bulb burned out.

 

love

don in ks

 

now my pain seems a bit different...mine is not topical but inner bone from the butt down and from the elbows down...my hands and feet are always in pain and the more you use tem the more they curl up and don't want to work and then it feels like the muscles and boes are also trying to curl up and almost fear they will break if used...

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

  athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

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Tonni,It's a screening kinda thing.  It's checking for liver cancer and cancerous tumors in or around your ovaries.  My doc does that test once a year just to stay on top of things..  with me, he is just checking for liver cancer because my ovaries and everything attached to it was removed in 2007.  Don't panic, you're all good.

Hugs,TeriOn Tue, Feb 1, 2011 at 2:43 PM, Tonni Brende <tbrende7@...> wrote:

 

I have no idea why...tubes tied 12 years ago and never told anything more than late satge2 hep c???????

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

 

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

 

now my pain seems a bit different...mine is not topical but inner bone from the butt down and from the elbows down...my hands and feet are always in pain and the more you use tem the more they curl up and don't want to work and then it feels like the muscles and boes are also trying to curl up and almost fear they will break if used...

 

Tonni Brende     Wife, Mother, Grandma too...

 

" Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. "

  athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

 

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