So, Tuesday I'm having brain surgery...

[A Desert Rose]

Last night I had 2 people tell me 5 times how much they liked my sweater. One lady told me once. The other told me 4 times and every time she told me, it was the first time she'd ever seen it. She told me 4 times in 4 different ways, but it was obvious that every time she told me, it was a new thing for her.

That's the beauty side of Alzheimer's. Everything's a new experience and it changes moment by moment.

But it's also a realilty that no one else can enter into and one that can't be understood. Alzheimer's patients don't live our reality and we don't live their's. They can't and we can't. It has to be a very frightening, unending nightmare. Or maybe it's like some kind of perverted time travel... and their time and space can't run parallel to ours.

The goal of care is to continue to redirect them - HA - which is almost never successful. Unless you call less than 5 minute distractions successful. They have a single minded purpose, whether that is to find an exit, pull a fire alarm or just to sit and cry for reasons no one can comprehend.

Losing the ability to connect with people you've loved or been loved by all your life has to be the ulitmate horror story. And the most heartbreaking thing is to watch a husband walk away from his wife of 41 years, week after week, with tears in his eyes and know she has lost all memory of it and him and the family they created together.

Okay. That was depressing. I'm sorry. On the other hand, I'm a pretty nice person and kinda fun to be around. I'm not always this black or bleak.

I think I'll just go to bed now.

 

[kayte]

Last night I had 2 people tell me 5 times how much they liked my sweater. One lady told me once. The other told me 4 times and every time she told me, it was the first time she'd ever seen it. She told me 4 times in 4 different ways, but it was obvious that every time she told me, it was a new thing for her.

That's the beauty side of Alzheimer's. Everything's a new experience and it changes moment by moment.

But it's also a realilty that no one else can enter into and one that can't be understood. Alzheimer's patients don't live our reality and we don't live their's. They can't and we can't. It has to be a very frightening, unending nightmare. Or maybe it's like some kind of perverted time travel... and their time and space can't run parallel to ours.

The goal of care is to continue to redirect them - HA - which is almost never successful. Unless you call less than 5 minute distractions successful. They have a single minded purpose, whether that is to find an exit, pull a fire alarm or just to sit and cry for reasons no one can comprehend.

Losing the ability to connect with people you've loved or been loved by all your life has to be the ulitmate horror story. And the most heartbreaking thing is to watch a husband walk away from his wife of 41 years, week after week, with tears in his eyes and know she has lost all memory of it and him and the family they created together.

Okay. That was depressing. I'm sorry. On the other hand, I'm a pretty nice person and kinda fun to be around. I'm not always this black or bleak.

I think I'll just go to bed now.

You are in my thoughts and prayers {{{{{{{{{ADR}}}}}}}}}}}} I have a small amount of experience with people in that state when I worked as an aide in a nursing home many many years ago. I remember one patient. Her husband came everyday to see her. She rarely remembered him. Yet he was there, he was patient. I was 18 at the time and I realized that what I was seeing was true love. And yes I saw him wipe his eyes many time as he left.

It sounds like you are so deeply involved with so many people who have lost themselves to the illness. Please don't feel bad about venting here. You need to do that.

You are a marveous, fun loving, dear, sweet woman. Leaving more positive thoughts and prayers.

 

[kayte]

Good afternoon {{{{{{{ADR}}}}}}}}}

Hope your weekend was a good one and I hope your week is going well sweetie.

Happy Hump Day!

 

[A Desert Rose]

Good afternoon {{{{{{{ADR}}}}}}}}}

Hope your weekend was a good one and I hope your week is going well sweetie.

Happy Hump Day!

I'm trying to get ready for work... LOL. You can see how well that's going.

Hope you're doing swell dolly! And that you're feeling good. Has the cold weather been hard on you this year?

 

[A Desert Rose]

My sewing machine's broke. This is a big deal to me. I took it in to get it repaired and they tried to put the hard sell on me to buy a new machine. They'd give me $700 on trade in for my (broken) Husqvarna to buy a $3200 baby lok. And they'd give it to me for $1800. I told them very politely that no, thank you, I'm happy with my machine and just want it fixed.

He called today and gave me this song and dance about a part that he can't seem to get and that he can kinda fix it so it would sew but no longer embroider. lots of yadda yadda yadda, I said no, that won't work. He kept on about how hard it was to get this part for my 9 year old machine (that cost me $2000 back then.)

I think they want me to buy a new machine. He even said "now, I'm not trying to talk you into a new machine..."

So finally I said, "Listen, I have a brain tumor and lots of medical bills. Sewing is my great love. I cannot afford, nor do I want a new machine. I like my Husqvarna. If you can't fix it, I can try someplace else."

I think I got my point across. I think he'll get the part.

Right now I'm using Jane's brother. It's a simple basic machine but it's adequate for the time being. I just want my machine and I want it to work!

 

[kayte]

I'm trying to get ready for work... LOL. You can see how well that's going.

Hope you're doing swell dolly! And that you're feeling good. Has the cold weather been hard on you this year?

{{{{{{{{ADR}}}}}}}}

Well it is going well enough, I mean you have realized you do have to get ready for that...

I'm doing ok, thank you. Hopefully we are done with snow for the year. I am being optimistic but one can hope. The cold and almost 100 inches of snow this year have been challenges. Right now it is the season change tha has a bit of an impact. It happens every spring and fall. Things will get better. It is mostly fatigue and balance. Thank you for asking.

How are things going for you sweetie? So, have you any definite trips set up yet? Or are things on hold because of your new position?

 

[kayte]

My sewing machine's broke. This is a big deal to me. I took it in to get it repaired and they tried to put the hard sell on me to buy a new machine. They'd give me $700 on trade in for my (broken) Husqvarna to buy a $3200 baby lok. And they'd give it to me for $1800. I told them very politely that no, thank you, I'm happy with my machine and just want it fixed.

He called today and gave me this song and dance about a part that he can't seem to get and that he can kinda fix it so it would sew but no longer embroider. lots of yadda yadda yadda, I said no, that won't work. He kept on about how hard it was to get this part for my 9 year old machine (that cost me $2000 back then.)

I think they want me to buy a new machine. He even said "now, I'm not trying to talk you into a new machine..."

So finally I said, "Listen, I have a brain tumor and lots of medical bills. Sewing is my great love. I cannot afford, nor do I want a new machine. I like my Husqvarna. If you can't fix it, I can try someplace else."

I think I got my point across. I think he'll get the part.

Right now I'm using Jane's brother. It's a simple basic machine but it's adequate for the time being. I just want my machine and I want it to work!

I am sure you got your point across. That hard sell is nasty at any time. I am glad you told him you will find someone else to take care of it for you. Have you tried the manufacturer online for part availability? Just a thought. Glad to hear you have something to use for right now.

 

[A Desert Rose]

I am sure you got your point across. That hard sell is nasty at any time. I am glad you told him you will find someone else to take care of it for you. Have you tried the manufacturer online for part availability? Just a thought. Glad to hear you have something to use for right now.

Yes. They do have a website and I'm pretty sure he knows that. I'm pretty sure that he can get this part, too. I took it back to the store I bought it from, for cryin' out loud LOL. They sold me this machine 9 years ago. They are no longer selling Husqvarna/Viking machines. Now they sell brother/baby loks.

He must've thought I was a dolt or an easy mark. lol These kinda guys irritate me no end.

 

[kayte]

Yes. They do have a website and I'm pretty sure he knows that. I'm pretty sure that he can get this part, too. I took it back to the store I bought it from, for cryin' out loud LOL. They sold me this machine 9 years ago. They are no longer selling Husqvarna/Viking machines. Now they sell brother/baby loks.

He must've thought I was a dolt or an easy mark. lol These kinda guys irritate me no end.

Guess he just wants to sell something. Maybe his new vendor is pushing that more than his old one.

I do hope you have a good evening/night when you head off to work sweetie.

 

[Noor]

Yes. They do have a website and I'm pretty sure he knows that. I'm pretty sure that he can get this part, too. I took it back to the store I bought it from, for cryin' out loud LOL. They sold me this machine 9 years ago. They are no longer selling Husqvarna/Viking machines. Now they sell brother/baby loks.

He must've thought I was a dolt or an easy mark. lol These kinda guys irritate me no end.

Sorry, I should have read this before I sent the email.

Nah, here's the deal. The guy is no longer an authorized Viking Dealer which means he can no longer get parts from Viking. If he had shifted to Pfaff he probably could but he shifted to babylock /brother which is distributed by Tacony, not Viking/Pfaff/Singer.
On older machines you can order parts from the big warehouses like Brewer. On newer machines unless its a machine that crossed manufacturers you can't very easily besides Vikings mainly crossed with white back then not any babylock/brother. I still have the Brewer parts lists so if you tell me the model and part I maybe able to find it.
Anyway, the other thing this guy is no longer able to do is attend Viking technical training which maybe a problem if this breakage thing is something particular to your machine model. Also on the off chance that this is a warrantied part, you need to take it to a authorized Viking dealer. Warranty parts are usually free, and you just have to pay for labor.
Based on the trade in value I am guessing your machine is Designer 1. I still have a sewing machine blue book! I will be seeing/talking to my Viking friend so if you let me know what its doing or not doing I can find out more. if its a Viking 1 and you haven't blown the board I would guess its a belt or timing issue and not a part, unless you been sewing interesting things and broke something.

 

[A Desert Rose]

I will get back to you on this, Noor. I don't know the model # but it's a Husqvarna Rose model and it's 9 years old. I'll have to look up the actual number. It would be wonderful if you could help me with this, though. ;-)

Right now, I need to go to sleep. I think I'm working again tonight... Nando and I are going put in a movie and climb into the big bed for lots of zzzzz's.

 

[A Desert Rose]

I'm bumping this thread to celebrate. Tomorrow will be 2 years since my seizure and the discovery of this tumor. And look how well I am! I don't look any different (maybe a couple new wrinkles) but no major changes. I've kept my hair! For me, that alone is cause of celebration. I remember at the time, what a big concern that was. Through it all, I've remained vain.

It's changed my life, indeed. Changed my priorities. Changed my view of everyday events. It's made me more spiritual. More compassionent. More conscious of my health. Less inhibited with the people I love. Greedier with my time, especially regarding my children. I want all the time I can get with them. And more impatient. I want to do it all and see it all, like yesterday. Made me set goals and make long range plans. Introduced me to people I would've never known otherwise and strengthened friendships. Given me the support of many strangers and long lasting friends, too. Shown me how good and caring most people are. I make sure to thank people more often and tell them how much they mean to me. I've learned that a sincere apology and doing the right thing is not always easy but it helps me sleep better at night.

All of those changes have been good and make me see this thing as a blessing.

Sometimes I find myself wondering if certain things are the fault of my tumor. I have a tendency to get more paranoid now. I don’t know if it's paranoia or real. Sometimes I question my own perception of things. I'm constantly asking people if it's me or "do you see it this way, too?" I'm sure that question annoys my friends. My right hand and fingers "fall asleep" a lot and I worry about that. I get dizzy often and have fallen a couple of times... but I'm not at the "and I can't get up" stage yet. LOL

This tumor will always hang over my head (pun intended) and it will always color things for me. But I do try to make it less important.

On the good side, I can still make good critical judgements when I need to and that means I'm still safe to work in my job and drive my car. I still find enjoyment and joy in all the things I've always loved to do. In fact, I find more joy than I used to. In a lot of ways, I'm more content with myself. I find more joy in my relationships... especially with my children, if that's possible. But I also try harder to be better than I was... a better mother, better friend, better person. I also know that I'll never be as good as I want to be.

I've been blessed in countless way and by so many people.

And after 2 years, just look how good I am!

 

[graceanne]

And after 2 years, just look how good I am!

Woo hoo!

 

[kayte]

I'm bumping this thread to celebrate. Tomorrow will be 2 years since my seizure and the discovery of this tumor. And look how well I am! I don't look any different (maybe a couple new wrinkles) but no major changes. I've kept my hair! For me, that alone is cause of celebration. I remember at the time, what a big concern that was. Through it all, I've remained vain.

It's changed my life, indeed. Changed my priorities. Changed my view of everyday events. It's made me more spiritual. More compassionent. More conscious of my health. Less inhibited with the people I love. Greedier with my time, especially regarding my children. I want all the time I can get with them. And more impatient. I want to do it all and see it all, like yesterday. Made me set goals and make long range plans. Introduced me to people I would've never known otherwise and strengthened friendships. Given me the support of many strangers and long lasting friends, too. Shown me how good and caring most people are. I make sure to thank people more often and tell them how much they mean to me. I've learned that a sincere apology and doing the right thing is not always easy but it helps me sleep better at night.

All of those changes have been good and make me see this thing as a blessing.

Sometimes I find myself wondering if certain things are the fault of my tumor. I have a tendency to get more paranoid now. I don’t know if it's paranoia or real. Sometimes I question my own perception of things. I'm constantly asking people if it's me or "do you see it this way, too?" I'm sure that question annoys my friends. My right hand and fingers "fall asleep" a lot and I worry about that. I get dizzy often and have fallen a couple of times... but I'm not at the "and I can't get up" stage yet. LOL

This tumor will always hang over my head (pun intended) and it will always color things for me. But I do try to make it less important.

On the good side, I can still make good critical judgements when I need to and that means I'm still safe to work in my job and drive my car. I still find enjoyment and joy in all the things I've always loved to do. In fact, I find more joy than I used to. In a lot of ways, I'm more content with myself. I find more joy in my relationships... especially with my children, if that's possible. But I also try harder to be better than I was... a better mother, better friend, better person. I also know that I'll never be as good as I want to be.

I've been blessed in countless way and by so many people.

And after 2 years, just look how good I am!

Yes you are {{{{{{{{ADR}}}}}}}}}}}

 

[FurryFury]

I'm bumping this thread to celebrate. Tomorrow will be 2 years since my seizure and the discovery of this tumor. And look how well I am! I don't look any different (maybe a couple new wrinkles) but no major changes. I've kept my hair! For me, that alone is cause of celebration. I remember at the time, what a big concern that was. Through it all, I've remained vain.

It's changed my life, indeed. Changed my priorities. Changed my view of everyday events. It's made me more spiritual. More compassionent. More conscious of my health. Less inhibited with the people I love. Greedier with my time, especially regarding my children. I want all the time I can get with them. And more impatient. I want to do it all and see it all, like yesterday. Made me set goals and make long range plans. Introduced me to people I would've never known otherwise and strengthened friendships. Given me the support of many strangers and long lasting friends, too. Shown me how good and caring most people are. I make sure to thank people more often and tell them how much they mean to me. I've learned that a sincere apology and doing the right thing is not always easy but it helps me sleep better at night.

All of those changes have been good and make me see this thing as a blessing.

Sometimes I find myself wondering if certain things are the fault of my tumor. I have a tendency to get more paranoid now. I don’t know if it's paranoia or real. Sometimes I question my own perception of things. I'm constantly asking people if it's me or "do you see it this way, too?" I'm sure that question annoys my friends. My right hand and fingers "fall asleep" a lot and I worry about that. I get dizzy often and have fallen a couple of times... but I'm not at the "and I can't get up" stage yet. LOL

This tumor will always hang over my head (pun intended) and it will always color things for me. But I do try to make it less important.

On the good side, I can still make good critical judgements when I need to and that means I'm still safe to work in my job and drive my car. I still find enjoyment and joy in all the things I've always loved to do. In fact, I find more joy than I used to. In a lot of ways, I'm more content with myself. I find more joy in my relationships... especially with my children, if that's possible. But I also try harder to be better than I was... a better mother, better friend, better person. I also know that I'll never be as good as I want to be.

I've been blessed in countless way and by so many people.

And after 2 years, just look how good I am!

This is an AWESOME post and thread!

 

[SubKekiLee]

woohoo!!!!!!
Yay!!!!!!

 

[Sir_Winston54]

And after 2 years, just look how good I am!

You always were good. This just gave you an incentive to look around and see how much better you could get.

 

[Desdemona]

I couldn't have said it better.

You always were good. This just gave you an incentive to look around and see how much better you could get.

This sums it up nicely.

 

[kayte]

You always were good. This just gave you an incentive to look around and see how much better you could get.

This sums it up nicely.

What Sir Winston and Des said.

 

[shy slave]

Two years, wow

In some ways the time has gone so quickly and in other ways it seems like i has been a snails pace.

You have been through so much and looking back over this thread it appears you found something inside you that made you fight and yet accept that yes this really is happening.

No matter how awful, no matter how angry, tired, miserable or any other negative feeling has been you have coped and remained true to the person you are.

It is a heck of a thing to go through to find just how strong you are, many of us would not manage to go through it as you have.

Despite everything you have not hidden from yourself. That takes courage, more courage than the majority of us will understand or ever need to find.

Yet, there have been highlights in the two years, hospital visits that showed the damn thing wasn't growing, seeing pics of your brain, knowing people here care about what is happening to you either through morbid curiosity or a 'thank God its not me, or because they really do give a damn about you.

Personally it has been quite something to read your updates and the posts from others giving you support, it has brought us closer as friends and that has brought tears humour and great times.

Laughing with you after the phone conversation where you had to go off to vomit was priceless, meeting you in Vegas, being able to hug you and sitting in that amazing revolving restaurant was just wonderful (more so, because neither of us paid lol). Now I am so excited that you are coming to England, I can't wait.
I want to be the great host that you were to G and I when we came over.

To me, you are a star

I love you
x

 

[A Desert Rose]

That other post was my pep talk. It was me, cheerleading myself UP. A couple of you got to see the other side. To you, I apologize, again. And hope I've not lost your friendship because of it. No one is more boring than someone who behaved like I did.

Shy, Des and fury, please forgive me.

I've learned to stay away from posting when I feel like that. Now I just have to remind myself to stop emailing or calling at those times, too. Thankfully, those times seem to be fewer and fewer so, it should be easier to get a grip on them.

And thank all of you who've posted for the sincere words of surpport. Several of you are fighting your own battles, and very gracefully.

All of your s are big! And I will keep trying to model mine after yours.

 

[shy slave]

That other post was my pep talk. It was me, cheerleading myself UP. A couple of you got to see the other side. To you, I apologize, again. And hope I've not lost your friendship because of it. No one is more boring than someone who behaved like I did.

Shy, Des and fury, please forgive me.

I've learned to stay away from posting when I feel like that. Now I just have to remind myself to stop emailing or calling at those times, too. Thankfully, those times seem to be fewer and fewer so, it should be easier to get a grip on them.

And thank all of you who've posted for the sincere words of surpport. Several of you are fighting your own battles, and very gracefully.

All of your s are big! And I will keep trying to model mine after yours.

Call, email, shout, scream, whatever you want is fine by me.

Friends do that y'know.

We don't just want the hearts and flowers friendship, we want all of it.

God knows I have whined down the phone to you often enough, so fair is fair..right ? lol

 

[SierraMoon]

That other post was my pep talk. It was me, cheerleading myself UP. A couple of you got to see the other side. To you, I apologize, again. And hope I've not lost your friendship because of it. No one is more boring than someone who behaved like I did.

Shy, Des and fury, please forgive me.

I've learned to stay away from posting when I feel like that. Now I just have to remind myself to stop emailing or calling at those times, too. Thankfully, those times seem to be fewer and fewer so, it should be easier to get a grip on them.

And thank all of you who've posted for the sincere words of surpport. Several of you are fighting your own battles, and very gracefully.

All of your s are big! And I will keep trying to model mine after yours.

Oh darlin, You are such an inspiration to us all. You didn't let your tumor drag you down. You were always upbeat, making us laugh, even when we knew you weren't up to it. I could only hope if anything like that ever happens to me, that I would handle it with half the amount of grace that you did.

Congrats to you for the 2 year mark!! We all love you, you are human and we enjoy EVERY side of you!!!!!!!

Love you darlin!!!!!

 

[FurryFury]

Oh darlin, You are such an inspiration to us all. You didn't let your tumor drag you down. You were always upbeat, making us laugh, even when we knew you weren't up to it. I could only hope if anything like that ever happens to me, that I would handle it with half the amount of grace that you did.

Congrats to you for the 2 year mark!! We all love you, you are human and we enjoy EVERY side of you!!!!!!!

Love you darlin!!!!!

I agree! Great post SierraMoon!

You've got nothing to apologize for, not to me anyway.

 

[kayte]

That other post was my pep talk. It was me, cheerleading myself UP. A couple of you got to see the other side. To you, I apologize, again. And hope I've not lost your friendship because of it. No one is more boring than someone who behaved like I did.

Shy, Des and fury, please forgive me.

I've learned to stay away from posting when I feel like that. Now I just have to remind myself to stop emailing or calling at those times, too. Thankfully, those times seem to be fewer and fewer so, it should be easier to get a grip on them.

And thank all of you who've posted for the sincere words of surpport. Several of you are fighting your own battles, and very gracefully.

All of your s are big! And I will keep trying to model mine after yours.

{{{{{{{{{ADR}}}}}}}}}}}} Thinking about you. You are such a strong graceful woman.