Re: improvements are holding

[Guest guest]

Aletta

I`m so happy the buscopan is making life easier and less painful for you.Hope it continues to help .The postings this weekend have been so full of our fellow sufferers and caregivers struggles with life -I felt so sad but also so overwhelmed at the strength of the women in this group,Vera , Belinda ,Deborah and all you ladies,you are all so courageous and it`s been a real blessing to me to know you continue to love life and can get through this horrible illness.I`m struggling with the pain - no relief and it`s over a year now, my other symptoms I can manage but the pain is so intense it scares me but you all give me hope that I too can carry on .Thanks and Love

Marg Manson

to the wind and took the buscopan on waking. Then watched the Monaco GP. for the first time in many years I could enjoy the bright scarlet of the Ferrari. Perhaps the dilation of the pupils associated with Hyocsine are giving me back some of the ability to see the colours as they are meant to be seen. Blurriness is unchanged and focusing/depth of vision is no better. I'm looking forward to painting later today. The ones I did paint look very different from the last time I looked at them. The vertigo is still at bay. I can do some of my dance exercises standing up without pitching over, walking is better too (clumsy feet still botch it up and I still get waves of woozy - OH is the same). The ringing in my ears is faint and I can enjoy sound as well as silence. I fell asleep last night without needing the TV on. My heart pounds a bit heavily (but doc says my heart can take it, it's a healthy heart). Apparently it is also available in a twelve hour patch. I am smoking far less, perhps because life is just more enjoyable and I need less distraction. I did quite a bit of searching on the net about this and other than the purists considering it a narcotic/abuse issue I see no downside. I have enough to last me till Wednesday. Hopefully the work-action by doctors will not prevent me getting a refill - stupid government has made it an offence to give out refills without an office visit. One more benefit, the gut wrenching cramps usually associated with BM are far less, I could actually not lie down for a half hour after waiting for the pain to die down. I'm just happy I can reach and stretch my arms over my head while standing and not fall over and feel sick, wow.aletta mesvancouver, bc Canadaweb: http://aletta.0catch.comIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Margaret,

That you should be in so much pain, is unacceptable, and you need to let

your doctor(s) know this in no uncertain terms. Demand to have your

pain aknowledged, use charts, character witnesses, whatever you have

to. If the pain wears you down this illness swallows you up.

Make the relief a priority, then take a breath and find a pint or pound

of whatever gives you joy, who sold us the concept that suffering is

acceptable? If you get shrugs instead of answers, find someone else

to help you. My daughter told me Percodan was wonderful, took her

from suicidal to pleasantly giddy in no time. We refer to this

brief time as her well-deserved vacation from the pain.

At Sunday 5/26/02 08:32 PM, you wrote:

Aletta

I`m so happy the buscopan is making life easier and less painful for

you.Hope it continues to help .The postings this weekend have been so

full of our fellow sufferers and caregivers struggles with life -I felt

so sad but also so overwhelmed at the strength of the women in this

group,Vera , Belinda ,Deborah and all you ladies,you are all so

courageous and it`s been a real blessing to me to know you continue

to love life and can get through this horrible illness.I`m struggling

with the pain - no relief and it`s over a year now, my other symptoms I

can manage but the pain is so intense it scares me but you all give

me hope that I too can carry on .Thanks and Love

Marg Manson

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com

[Guest guest]

Aletta,

I am so glad that you have found something that is helping you. If a

medicine helps you I say use it. I think you should enjoy your

painting, dancing, your family, and anything else you want to do. I

hope that you will be able to get your refill.

God bless,

Belinda

> Today I threw caution to the wind and took the buscopan on waking.

Then

> watched the Monaco GP. for the first time in many years I could

enjoy the

> bright scarlet of the Ferrari. Perhaps the dilation of the pupils

> associated with Hyocsine are giving me back some of the ability to

see the

> colours as they are meant to be seen. Blurriness is unchanged and

> focusing/depth of vision is no better. I'm looking forward to

painting

> later today. The ones I did paint look very different from the

last time I

> looked at them. The vertigo is still at bay. I can do some of my

dance

> exercises standing up without pitching over, walking is better too

(clumsy

> feet still botch it up and I still get waves of woozy - OH is the

> same). The ringing in my ears is faint and I can enjoy sound as

well as

> silence. I fell asleep last night without needing the TV on. My

heart

> pounds a bit heavily (but doc says my heart can take it, it's a

healthy

> heart). Apparently it is also available in a twelve hour patch. I

am

> smoking far less, perhps because life is just more enjoyable and I

need

> less distraction. I did quite a bit of searching on the net about

this and

> other than the purists considering it a narcotic/abuse issue I see

no

> downside. I have enough to last me till Wednesday. Hopefully the

> work-action by doctors will not prevent me getting a refill -

stupid

> government has made it an offence to give out refills without an

office

> visit. One more benefit, the gut wrenching cramps usually

associated with

> BM are far less, I could actually not lie down for a half hour

after

> waiting for the pain to die down. I'm just happy I can reach and

stretch

> my arms over my head while standing and not fall over and feel

sick, wow.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

I am so glad that you have found something that is helping you. If a

medicine helps you I say use it. I think you should enjoy your

painting, dancing, your family, and anything else you want to do. I

hope that you will be able to get your refill.

God bless,

Belinda

> Today I threw caution to the wind and took the buscopan on waking.

Then

> watched the Monaco GP. for the first time in many years I could

enjoy the

> bright scarlet of the Ferrari. Perhaps the dilation of the pupils

> associated with Hyocsine are giving me back some of the ability to

see the

> colours as they are meant to be seen. Blurriness is unchanged and

> focusing/depth of vision is no better. I'm looking forward to

painting

> later today. The ones I did paint look very different from the

last time I

> looked at them. The vertigo is still at bay. I can do some of my

dance

> exercises standing up without pitching over, walking is better too

(clumsy

> feet still botch it up and I still get waves of woozy - OH is the

> same). The ringing in my ears is faint and I can enjoy sound as

well as

> silence. I fell asleep last night without needing the TV on. My

heart

> pounds a bit heavily (but doc says my heart can take it, it's a

healthy

> heart). Apparently it is also available in a twelve hour patch. I

am

> smoking far less, perhps because life is just more enjoyable and I

need

> less distraction. I did quite a bit of searching on the net about

this and

> other than the purists considering it a narcotic/abuse issue I see

no

> downside. I have enough to last me till Wednesday. Hopefully the

> work-action by doctors will not prevent me getting a refill -

stupid

> government has made it an offence to give out refills without an

office

> visit. One more benefit, the gut wrenching cramps usually

associated with

> BM are far less, I could actually not lie down for a half hour

after

> waiting for the pain to die down. I'm just happy I can reach and

stretch

> my arms over my head while standing and not fall over and feel

sick, wow.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

I am so glad that you have found something that is helping you. If a

medicine helps you I say use it. I think you should enjoy your

painting, dancing, your family, and anything else you want to do. I

hope that you will be able to get your refill.

God bless,

Belinda

> Today I threw caution to the wind and took the buscopan on waking.

Then

> watched the Monaco GP. for the first time in many years I could

enjoy the

> bright scarlet of the Ferrari. Perhaps the dilation of the pupils

> associated with Hyocsine are giving me back some of the ability to

see the

> colours as they are meant to be seen. Blurriness is unchanged and

> focusing/depth of vision is no better. I'm looking forward to

painting

> later today. The ones I did paint look very different from the

last time I

> looked at them. The vertigo is still at bay. I can do some of my

dance

> exercises standing up without pitching over, walking is better too

(clumsy

> feet still botch it up and I still get waves of woozy - OH is the

> same). The ringing in my ears is faint and I can enjoy sound as

well as

> silence. I fell asleep last night without needing the TV on. My

heart

> pounds a bit heavily (but doc says my heart can take it, it's a

healthy

> heart). Apparently it is also available in a twelve hour patch. I

am

> smoking far less, perhps because life is just more enjoyable and I

need

> less distraction. I did quite a bit of searching on the net about

this and

> other than the purists considering it a narcotic/abuse issue I see

no

> downside. I have enough to last me till Wednesday. Hopefully the

> work-action by doctors will not prevent me getting a refill -

stupid

> government has made it an offence to give out refills without an

office

> visit. One more benefit, the gut wrenching cramps usually

associated with

> BM are far less, I could actually not lie down for a half hour

after

> waiting for the pain to die down. I'm just happy I can reach and

stretch

> my arms over my head while standing and not fall over and feel

sick, wow.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

It is so good to hear that you are having better days and some relief from

some of your symptoms. I have written down the name of the drug and will do

some investigating to see if maybe my doctor could try it on me. Heck, all

I have to lose is another rash and I'm getting quite used to them... take a

pill...break out in a rash... burn....itch....complain......take a steroid

and an antihistamine..... stop itching... peel....start all over again.

It's almost like singing the song Hokey Pokey.

Now I have truly gone off the deep end.... just envision all of us

crustations doing the hokey pokey with our cocktail of medications.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Aletta,

It is so good to hear that you are having better days and some relief from

some of your symptoms. I have written down the name of the drug and will do

some investigating to see if maybe my doctor could try it on me. Heck, all

I have to lose is another rash and I'm getting quite used to them... take a

pill...break out in a rash... burn....itch....complain......take a steroid

and an antihistamine..... stop itching... peel....start all over again.

It's almost like singing the song Hokey Pokey.

Now I have truly gone off the deep end.... just envision all of us

crustations doing the hokey pokey with our cocktail of medications.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Aletta,

It is so good to hear that you are having better days and some relief from

some of your symptoms. I have written down the name of the drug and will do

some investigating to see if maybe my doctor could try it on me. Heck, all

I have to lose is another rash and I'm getting quite used to them... take a

pill...break out in a rash... burn....itch....complain......take a steroid

and an antihistamine..... stop itching... peel....start all over again.

It's almost like singing the song Hokey Pokey.

Now I have truly gone off the deep end.... just envision all of us

crustations doing the hokey pokey with our cocktail of medications.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com