Re: to Donna et al

[Guest guest]

Faye

Everything that Andy has planned sounds so awesome! I'd love to come

up and tip a few back..so long as they are non-alcoholic

unfortunately..those damn meds ROFL!!!!

The room sounds like it will be incredibly impressive to say the

least. You are fortunate to have that man in your life that has taken

on quite a challenge that this RSD has handed you.

you sounds like you have such an incredible outlook on life though

and thats fantastic. Everyone loses so much of their old life when

they are trying to battle this and its wonderful when someone fights

back to maintain some of their life.

I went through a few months of resentment over things that I felt had

been taken from me..my fulltime job, some of my independance, many

friends that must not really have been, some financial security that

we had worked to build and a majority of my physical strength that

has taken me so much longer to get back than I ever thought.

I have been through 5 stellate ganglion injections, 14 months of

therapy, rounds and rounds of meds, multiple exams, several tests and

it all came down to a lifechange that takes its toll daily.

But on the positive side, I know my limits and I know when to exceed

them, I know I CAN push through some, I know my family support system

even if some days I dont think they do but most of all I know I am

capable of surviving even the worst of this and taking it day to day.

Sure there will certainly be harder days ahead but I can also tell

myself that there will be some easier days too and that my attitude

is what makes all the difference in the world. I can fight some of

this and I will keep all the independance possible.

Ok..off the soapbox I climb LOL...I've been chewing ears long enough!

Talk soon

Donna

[Guest guest]

Hey Donna -

you know Andy didn't sign up for the RSD, he signed up for a brain injury, a neck injury that was deteriorating, and seizures that were not under control that we weren't sure what was causing them. That was all.

We didn't get the RSD diagnosis difinitive until November, and I didn't tell him or my family until December 11 - then we didn't look it up on the computer to see what it REALLY WAS until Christmas break........as soon as we looked it up - it was like light bulbs going off all over the place, all those unanswered medical questions answered. When my doctor told me, he was just so over calm about it, it just seemed so surreal. It didn't sound like anything much, he just took my hands and looked at them and said - well, you have Reflex Sympathetic Dystrophy that's the answer there. I just thought he meant my cold hands. Dumb a** me!

When I went back for my January appointment, I had scads of information to take back to him, from the internet, and a write up of all my symtoms and where and how bad and how often.

Still it's kind of surreal. Andy still just keeps saying don't worry about it...even last night, when I went to get into the tub, my whole 4 limbs and back and shoulders front and back were all "patchy lines of purple - really coloured, over opaque white -" like you could have made me a colouring book - and he said "Don't worry" It was gross looking.

I don't even know what it means to have that. But I won't worry cause worry isn't good. that much I do know. I can't change the lines, but I can change the worry. If anybody knows what the lines mean, it would be cool to know what it means to have them all over your body. I sure wasn't cold, wearing an outfit and housecoat too, and gloves. Gloves work like crap at keeping your hands warm, they don't your hands are just as freaking cold in them as out of them.

I'm glad I have Andy, I don't know what I would do with out him - he pushes me to do better, and picks me up when I fall. Mostly he gives me no pressure, and keeps reminding me to not be stressed about anything. That's alot of work for someone, and I know he must be scared too. This is sure way more of a job than he signed up for in the beginning, but he's a smart guy - I know he will MacIver a way out of this for us, or at least MacIver a way around this.

Now - about your soapbox - you are welcome in my book to get up on it and "speach" any old time you want to! I can just imagine the impact that over the years this must have had on your life and family. It is truly a blessing that it has remained intact, and a testament to your family's strength. I'm sure your family is much stronger now than it would have been had you all not gone through all the hardships you have.

In every pile of crap there's a small nugget of gold - it's just that the piles of crap are so big, no one ever goes looking for the gold! It's just in our cases we had to sit in the crap for sooo long that we just happened upon the nugget of gold while waiting....for that doctors appointment 4 months down the road, or the hearing 10 months down the road...you know!

You sure have had your share of treatments, strength and determination on your part - thankfully to late a diagnosis on my part as I have zero guts for needles at all. I pray every day that I don't get diabetes - that I swear is my worst fear. I have so much respect and admiration for every one that has gotten treatment for this disease, moreso than you can imagine.

As well, you and everyone is always welcome to come to "my bar" when it is finished, although, anyone handy with a hammer is welcome to come earlier - especially those good at 'muddin and tapin' - that's drywall language! We are going to call it Kronix. Named after all those who truly miss live music that much they are willing to come to the basement to get it.

Love to you and yours, Faye

Donna wrote:

FayeThe room sounds like it will be incredibly impressive to say the least. You are fortunate to have that man in your life that has taken on quite a challenge that this RSD has handed you.

[Guest guest]

Hey Donna -

you know Andy didn't sign up for the RSD, he signed up for a brain injury, a neck injury that was deteriorating, and seizures that were not under control that we weren't sure what was causing them. That was all.

We didn't get the RSD diagnosis difinitive until November, and I didn't tell him or my family until December 11 - then we didn't look it up on the computer to see what it REALLY WAS until Christmas break........as soon as we looked it up - it was like light bulbs going off all over the place, all those unanswered medical questions answered. When my doctor told me, he was just so over calm about it, it just seemed so surreal. It didn't sound like anything much, he just took my hands and looked at them and said - well, you have Reflex Sympathetic Dystrophy that's the answer there. I just thought he meant my cold hands. Dumb a** me!

When I went back for my January appointment, I had scads of information to take back to him, from the internet, and a write up of all my symtoms and where and how bad and how often.

Still it's kind of surreal. Andy still just keeps saying don't worry about it...even last night, when I went to get into the tub, my whole 4 limbs and back and shoulders front and back were all "patchy lines of purple - really coloured, over opaque white -" like you could have made me a colouring book - and he said "Don't worry" It was gross looking.

I don't even know what it means to have that. But I won't worry cause worry isn't good. that much I do know. I can't change the lines, but I can change the worry. If anybody knows what the lines mean, it would be cool to know what it means to have them all over your body. I sure wasn't cold, wearing an outfit and housecoat too, and gloves. Gloves work like crap at keeping your hands warm, they don't your hands are just as freaking cold in them as out of them.

I'm glad I have Andy, I don't know what I would do with out him - he pushes me to do better, and picks me up when I fall. Mostly he gives me no pressure, and keeps reminding me to not be stressed about anything. That's alot of work for someone, and I know he must be scared too. This is sure way more of a job than he signed up for in the beginning, but he's a smart guy - I know he will MacIver a way out of this for us, or at least MacIver a way around this.

Now - about your soapbox - you are welcome in my book to get up on it and "speach" any old time you want to! I can just imagine the impact that over the years this must have had on your life and family. It is truly a blessing that it has remained intact, and a testament to your family's strength. I'm sure your family is much stronger now than it would have been had you all not gone through all the hardships you have.

In every pile of crap there's a small nugget of gold - it's just that the piles of crap are so big, no one ever goes looking for the gold! It's just in our cases we had to sit in the crap for sooo long that we just happened upon the nugget of gold while waiting....for that doctors appointment 4 months down the road, or the hearing 10 months down the road...you know!

You sure have had your share of treatments, strength and determination on your part - thankfully to late a diagnosis on my part as I have zero guts for needles at all. I pray every day that I don't get diabetes - that I swear is my worst fear. I have so much respect and admiration for every one that has gotten treatment for this disease, moreso than you can imagine.

As well, you and everyone is always welcome to come to "my bar" when it is finished, although, anyone handy with a hammer is welcome to come earlier - especially those good at 'muddin and tapin' - that's drywall language! We are going to call it Kronix. Named after all those who truly miss live music that much they are willing to come to the basement to get it.

Love to you and yours, Faye

Donna wrote:

FayeThe room sounds like it will be incredibly impressive to say the least. You are fortunate to have that man in your life that has taken on quite a challenge that this RSD has handed you.

[Guest guest]

Hi Faye,

I have been following the posts –

just saw that you’re building a nightclub in your basement?! That’s

fantastic! I think one of the hardest parts of this for me has been the

isolation, due to not wanting to aggravate my feet by being out in the world.

It would be heavenly to have the world come to me!! ) I’m sure it will

be great to get back some of your old life, won’t it?

Have fun!

Alyson

to

Donna et al

Hey Donna, thanks for checking out my old bar. I

like looking back on what people used to say about it and me and the things we

did, especially the fundraisers. And I like to see the bands, and the

people. Rita McNeil came, so did Dr. Hook, but there's no pictures of

either of those. Being from the States I don't know if you would know who

Rita McNeil is but she is a great singer from Nova Scotia and has the Order of

Canada, the highest award any one can receive from the government. I

called her up and invited her to come for dinner and a R & R break on her

tour with the Men of the Deeps choir, my father in law at the time, was also a

miner from Nova Scotia, as are the Men of the Deeps choir - and they accepted

my invitation. It wasn't a paid gig - they just really came to my bar for

dinner and to shoot some pool and relax for a couple of hours on a Tuesday

afternoon. Dr. Hook came, and stayed for 2 days - it was just way too

much fun for one day.

I am so happy that you took the time to see my old

life, I really miss it. I was in a car accident and lost that life in one

split second. Nobody really thought that I wouldn't be right back up on

the horse again. Last year my friend asked me if I wanted to come out as

second light tech for the 3 days grace tour, really ticked me off, they were

opening up for one of my faves...nickelback. It took me about

2 years to finally come to terms that my old life was over, and to accept that

I had a new life, and that I might as well learn to like some stuff about my

new life - riddled with pain and seizures as it was. Now, even with the

bad stuff, I'm pretty happy the friends I do have are great, and the friends I

don't have weren't worth it anyway. Andy is wonderful, and I met him

after the accident, eventhough he used to come to the bar and watch me work on

the weekend nights - and I didn't even know it - he takes me as I am, pushes me

to be better, picks me up when I fall and loves me no matter what happens

in our future. It's not the life I ordered, but it's

interesting to know how much fun stuff goes on in the world on the weekends,

especially when you're not stuck inside the same bar from sun up until sun up

every day of the weekend. haha.

Thanks again, maybe after Andy gets the nightclub

built in the basement you can come up and tip a few??? That's his new

project, a nightclub - in the basement. We even have bands already lined

up to come and play here, we will be the only place in our town with live

music, and we also will have a couple pool tables, 3 dart boards, of

course the stand up bar, with stools - for the girlies (so Andy says) a stage,

with lighting - so I can play around, and some seating and a big screen tv

and a fire place. It's a really big room with 10 foot

ceilings. The old owners used to hold service club meeting, wedding

receptions and the like here, theres a kitchen and bathroom downstairs

too. I guess Andy just really wants me to have my bar back, or my old

life back - or something similar. Mentally it is a good thing, I know all

my old friends will be here all the time, it is definately the best band

practice hall there ever was - oh gosh it sounds more and more like one of

those moonshine joints, what do you call them, afterhours, secret knock

things....you know!!

Well, at least all this talk of nonsense, and fun sense

has put me in a rather great mood. Thanks for that - I think I'll go

downstairs and spank the carpenter! See if it gets me into anymore trouble, I

hope I hope!

Talk to you soon, Love to you and yours, Faye

Donna

wrote:

Thats an awesome website!! Thanks for providing

the link!

Community

email addresses:

Post

message:RSD-CRPSofAmerica

Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica

[Guest guest]

Thanks Faye. You’re in Eastern Canada, right? I was raised in Vancouver

and my mom’s in Toronto now. So maybe one day when it’s ready, I will come

hang out in your new bar! At least I’d know there might be a chair nearby

to run to!

I am still trying to figure what I’m

supposed to “do” with this whole CRPS thing – how to live and

not isolate myself. I was just diagnosed – in November and December,

before I knew what I had, I decided to try something new – I took NSAIDS

for a month and pushed past the pain, thinking, maybe I’ve just been

babying myself too much. I decided, ‘No more isolation! I’m going

to go out and have fun and forget my feet! They won’t control my life any

more!’ I’d spent the past 2 years quite isolated and very depressed

as a result. Now that I know what I have, I know that that was a BIG mistake –

and I am much worse off as a result. So, I had a fun month, pretending I was a healthy

person, but now I have to reel myself back in, and find the happy medium…

I really believe that when we’re

presented in life with something that seems insurmountable, there is a great

deal to be learned from it – and if you try to embrace that learning

process, you will come out the other end understanding why it’s happened,

and what you’ve gained from it, and hopefully you’ll have something

new to offer the world from your new perspective. That don’t make it any

easier though! I really do believe I will gain something from all this, but you

know, I am still really lost in all of it. I find it particularly hard not knowing

how bad it will get; if I lost a limb, or was told you will always feel ‘x’,

then I think I could adapt better to it; it’s the fear of it spreading,

and not knowing if I’ll still be able to work in 6 months or in a year,

that sort of thing, that really gets to me. I’ve always done well if I

know what the bottom line is, but I feel in this case, I just don’t.

As I’ve been reading about your

case, and everyone’s, I’ve learned there are a lot of you out there

who are so much worse off than I currently am; while on the one hand it helps

me put my own case in perspective, it also scares me as to where this path will

lead…with every new pain or symptom, I’m worried, ‘Is it

spreading?’ (my symptoms have been somewhat static for the past 2 years).

Somehow I have to learn to accept that it’s going to go wherever it’s

going to go, and I just have to hang on for the ride…

RE:

to Donna et al

Hey Alyson - you'll have to come up for a visit...I

can't wait...it sure is great therapy. I live in a town about 9000

people, and lots of my friends are musicians who will be happy for a place to

come and jam and hang out. I hope they don't mind a hostess in pajama's,

it's my dress of choice! I guess I am pretty spoiled rotten, but Andy

also worked in bars part time for years, and always hung out in them on the

weekends listening to music too, so I think there is maybe a little bit of

selfishness on his part too - he says he is painting the two retaining poles

brass, for the dancing girls! Must be for my night off.

It's good that our family has such a great and warped

sense of humour, it is for sure the one thing that will get us through to the

end of this disease together.

It is way too easy to isolate yourself, whether it be

from pain, or just the thought of protecting yourself from future pain, or

maybe even just wanting to cocoon into your self....don't let the world go on

without you - you still have so much to offer to the world, always remember

that - and then find a safe for you way to offer yourself back to the

world. We always have to remember to give more to the world than we take

from it - that is what makes the world go round.

Hope all is well with you today Alyson, Best to you

and yours, Faye

Alyson Ritchie

wrote:

Hi Faye,

I have been following the

posts – just saw that you’re building a nightclub in your

basement?! That’s fantastic! I think one of the hardest parts of this for

me has been the isolation, due to not wanting to aggravate my feet by being out

in the world. It would be heavenly to have the world come to me!! ) I’m

sure it will be great to get back some of your old life, won’t it?

Have fun!

Alyson

Community

email addresses:

Post

message:RSD-CRPSofAmerica

Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica

[Guest guest]

Thanks Faye. You’re in Eastern Canada, right? I was raised in Vancouver

and my mom’s in Toronto now. So maybe one day when it’s ready, I will come

hang out in your new bar! At least I’d know there might be a chair nearby

to run to!

I am still trying to figure what I’m

supposed to “do” with this whole CRPS thing – how to live and

not isolate myself. I was just diagnosed – in November and December,

before I knew what I had, I decided to try something new – I took NSAIDS

for a month and pushed past the pain, thinking, maybe I’ve just been

babying myself too much. I decided, ‘No more isolation! I’m going

to go out and have fun and forget my feet! They won’t control my life any

more!’ I’d spent the past 2 years quite isolated and very depressed

as a result. Now that I know what I have, I know that that was a BIG mistake –

and I am much worse off as a result. So, I had a fun month, pretending I was a healthy

person, but now I have to reel myself back in, and find the happy medium…

I really believe that when we’re

presented in life with something that seems insurmountable, there is a great

deal to be learned from it – and if you try to embrace that learning

process, you will come out the other end understanding why it’s happened,

and what you’ve gained from it, and hopefully you’ll have something

new to offer the world from your new perspective. That don’t make it any

easier though! I really do believe I will gain something from all this, but you

know, I am still really lost in all of it. I find it particularly hard not knowing

how bad it will get; if I lost a limb, or was told you will always feel ‘x’,

then I think I could adapt better to it; it’s the fear of it spreading,

and not knowing if I’ll still be able to work in 6 months or in a year,

that sort of thing, that really gets to me. I’ve always done well if I

know what the bottom line is, but I feel in this case, I just don’t.

As I’ve been reading about your

case, and everyone’s, I’ve learned there are a lot of you out there

who are so much worse off than I currently am; while on the one hand it helps

me put my own case in perspective, it also scares me as to where this path will

lead…with every new pain or symptom, I’m worried, ‘Is it

spreading?’ (my symptoms have been somewhat static for the past 2 years).

Somehow I have to learn to accept that it’s going to go wherever it’s

going to go, and I just have to hang on for the ride…

RE:

to Donna et al

Hey Alyson - you'll have to come up for a visit...I

can't wait...it sure is great therapy. I live in a town about 9000

people, and lots of my friends are musicians who will be happy for a place to

come and jam and hang out. I hope they don't mind a hostess in pajama's,

it's my dress of choice! I guess I am pretty spoiled rotten, but Andy

also worked in bars part time for years, and always hung out in them on the

weekends listening to music too, so I think there is maybe a little bit of

selfishness on his part too - he says he is painting the two retaining poles

brass, for the dancing girls! Must be for my night off.

It's good that our family has such a great and warped

sense of humour, it is for sure the one thing that will get us through to the

end of this disease together.

It is way too easy to isolate yourself, whether it be

from pain, or just the thought of protecting yourself from future pain, or

maybe even just wanting to cocoon into your self....don't let the world go on

without you - you still have so much to offer to the world, always remember

that - and then find a safe for you way to offer yourself back to the

world. We always have to remember to give more to the world than we take

from it - that is what makes the world go round.

Hope all is well with you today Alyson, Best to you

and yours, Faye

Alyson Ritchie

wrote:

Hi Faye,

I have been following the

posts – just saw that you’re building a nightclub in your

basement?! That’s fantastic! I think one of the hardest parts of this for

me has been the isolation, due to not wanting to aggravate my feet by being out

in the world. It would be heavenly to have the world come to me!! ) I’m

sure it will be great to get back some of your old life, won’t it?

Have fun!

Alyson

Community

email addresses:

Post

message:RSD-CRPSofAmerica

Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica

[Guest guest]

Thanks Faye. You’re in Eastern Canada, right? I was raised in Vancouver

and my mom’s in Toronto now. So maybe one day when it’s ready, I will come

hang out in your new bar! At least I’d know there might be a chair nearby

to run to!

I am still trying to figure what I’m

supposed to “do” with this whole CRPS thing – how to live and

not isolate myself. I was just diagnosed – in November and December,

before I knew what I had, I decided to try something new – I took NSAIDS

for a month and pushed past the pain, thinking, maybe I’ve just been

babying myself too much. I decided, ‘No more isolation! I’m going

to go out and have fun and forget my feet! They won’t control my life any

more!’ I’d spent the past 2 years quite isolated and very depressed

as a result. Now that I know what I have, I know that that was a BIG mistake –

and I am much worse off as a result. So, I had a fun month, pretending I was a healthy

person, but now I have to reel myself back in, and find the happy medium…

I really believe that when we’re

presented in life with something that seems insurmountable, there is a great

deal to be learned from it – and if you try to embrace that learning

process, you will come out the other end understanding why it’s happened,

and what you’ve gained from it, and hopefully you’ll have something

new to offer the world from your new perspective. That don’t make it any

easier though! I really do believe I will gain something from all this, but you

know, I am still really lost in all of it. I find it particularly hard not knowing

how bad it will get; if I lost a limb, or was told you will always feel ‘x’,

then I think I could adapt better to it; it’s the fear of it spreading,

and not knowing if I’ll still be able to work in 6 months or in a year,

that sort of thing, that really gets to me. I’ve always done well if I

know what the bottom line is, but I feel in this case, I just don’t.

As I’ve been reading about your

case, and everyone’s, I’ve learned there are a lot of you out there

who are so much worse off than I currently am; while on the one hand it helps

me put my own case in perspective, it also scares me as to where this path will

lead…with every new pain or symptom, I’m worried, ‘Is it

spreading?’ (my symptoms have been somewhat static for the past 2 years).

Somehow I have to learn to accept that it’s going to go wherever it’s

going to go, and I just have to hang on for the ride…

RE:

to Donna et al

Hey Alyson - you'll have to come up for a visit...I

can't wait...it sure is great therapy. I live in a town about 9000

people, and lots of my friends are musicians who will be happy for a place to

come and jam and hang out. I hope they don't mind a hostess in pajama's,

it's my dress of choice! I guess I am pretty spoiled rotten, but Andy

also worked in bars part time for years, and always hung out in them on the

weekends listening to music too, so I think there is maybe a little bit of

selfishness on his part too - he says he is painting the two retaining poles

brass, for the dancing girls! Must be for my night off.

It's good that our family has such a great and warped

sense of humour, it is for sure the one thing that will get us through to the

end of this disease together.

It is way too easy to isolate yourself, whether it be

from pain, or just the thought of protecting yourself from future pain, or

maybe even just wanting to cocoon into your self....don't let the world go on

without you - you still have so much to offer to the world, always remember

that - and then find a safe for you way to offer yourself back to the

world. We always have to remember to give more to the world than we take

from it - that is what makes the world go round.

Hope all is well with you today Alyson, Best to you

and yours, Faye

Alyson Ritchie

wrote:

Hi Faye,

I have been following the

posts – just saw that you’re building a nightclub in your

basement?! That’s fantastic! I think one of the hardest parts of this for

me has been the isolation, due to not wanting to aggravate my feet by being out

in the world. It would be heavenly to have the world come to me!! ) I’m

sure it will be great to get back some of your old life, won’t it?

Have fun!

Alyson

Community

email addresses:

Post

message:RSD-CRPSofAmerica

Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica