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Re: I'm speechless!!

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We had flying cucarachas where we were in Fla...nasty little buggers...I remember one flying toward me and hitting the ceiling fan with a *ping* and never being seen again...I rolled with laughter on That one!!! Hugs Akiba No such bugs hereabout! -- Re: I'm speechless!! Im really getting Enticed now! Lol. :P My grandma has flying cock roaches were she lives.Do you have them Sharon.I use to live out there were my g-ma lives.It is considered california but is just a few miles of Arizona.We never had roaches in the house just huge ones flying outside. So gross! Once a friend of mine came to visit and rode with my uncle,they got in his truck to leave and all we heard was screaming and crying,we went out to see what was goin on and she was throwing her hands around and jumped outta the car and was running and yelling.Rofl.lol.A story to remember I still mess with her about it.I dont think it gets any worse then a huge flying cockroach.lol.Lots of luv,cassy[cop.girlearthlink (DOT) net] wrote:Hmmm~Great minds think alike! I was thinking the very same thing. What do ya think, Cassy??Yeah, I hear ya on the bug issue. Do you know, growing up, I had heard about cockroaches. But, I had never actually seen one until I moved to the south. I'm serious. I was in my mid-twenties before I'd seen one. Then, I almost flipped out! Especially when I found out there were so many different kinds. The first time I'd ever seen one fly, it freaked me out. I'd always thought that only dirty people had cockroaches. But, in the south, anyone can get an occasional one or two. I still believe that if your house is infested with them...you gotta start thinking about doing some serious housework.Another thing I hate are the no-see-em's. I'd never heard of them either. The are a lot like chiggers. Nasty little critters.We've had lightning bugs out this year for quite awhile. We didn't really have a winter this year, so all the critters and plant life got a little confused.And thanks for the compliment. I think you're great too!!Love and blessings....Val Re: I'm speechless!!Y'all are in NC, if I recall...I understad not liking it, being from Idaho. I lived in Florida for years, it is SO different down there. rob and I were saying just today that one of the things I really do NOT miss from the more Southern area is some of the bugs...red ants, fleas, cockroaches...none of those here. We DO have bugs, yeah, there is something they call a "potato bug", looks like a solid red ladybug, They're Ok but very prolific for about a month. And there are ticks, but they're the big brown dog ticks not the itty bitty red deer ticks that carry lymes, and of course there are 'skeeters, here, there, everywhere...but all in all the bugs here don't "bug" me half as much as the bugs there did! And where we are the is almost NO light at night other then the moon and stars, which are SO big they're incredible! And I saw the first lightning bugs the other night...YAY!, I Love those! And the quiet...it is SO lovely and quiet!Sure, tell Mark there is a place for him here...if he's your bro he's gotta be a great person to know...maybe we can then entice Cassy to come here too...start an MS commune...wouldn't that be fun!!!Hugs All y'all!!!Akiba (watching vampires on the history channel...gonna need my woobie to keep nightmares away...)-------Original Message-------From: Val LeeDate: 6/9/2007 11:59:17 PMTo: MSersLife Subject: Re: I'm speechless!!Okie dokie then. When I get ahold of him, I'll sure let you know. He has been talkngabout moving back west. You know, we're originally(sp?) from Idaho. Have long winters there as well. He's used to a different culture than the one here. Can't say I blame him. I hate it here, myself. But,....

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I sure will. And I want to thank you for everything. I'll get back to you on that other thing. Okay? ;)

Blessed be....Val @};-

Re: I'm speechless!!Cassy...This is not for Charcot Marie Tooth but another form of MD. Have you had your liver enzymes checked? The reason I ask, I had a girlfriend from college (Melody) and she became a lab technician.....

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where are y'all? Hugs Akiba -- Re: I'm speechless!! You and Rob are awesome Akiba.What loving people! Now if you bulid a cabin be prepared to see me and my girls REAL soon.lol.How many hours is it from me to you? Please dont say days.lol.[akyba@...] wrote:I told Rob about Mark, he said "Bring him on! I need the help!" He's alreadymaking plans to enclose the porch to make another bedroom or build a smallcabin...so Yes, Mark would be a welcome addition to the "family"HugsAkiba-------Original Message-------From: Val LeeDate: 6/10/2007 12:43:26 PMTo: MSersLife Subject: Re: I'm speechless!!Hmmm~Great minds think alike! I was thinking the very same thing. What do yathink, Cassy??Yeah, I hear ya on the bug issue. Do you know, growing up, I had heardabout cockroaches. But, I had never actually seen one until I moved to thesouth. I'm serious. I was in my mid-twenties before I'd seen one. Then, Ialmost flipped out! Especially when I found out there were so many differentkinds. The first time I'd ever seen one fly, it freaked me out. I'd alwaysthought that only dirty people had cockroaches. But, in the south, anyonecan get an occasional one or two. I still believe that if your house isinfested with them...you gotta start thinking about doing some serioushousework.Another thing I hate are the no-see-em's. I'd never heard of them either.The are a lot like chiggers. Nasty little critters.We've had lightning bugs out this year for quite awhile. We didn't reallyhave a winter this year, so all the critters and plant life got a littleconfused.And thanks for the compliment. I think you're great too!!Love and blessings....Val Re: I'm speechless!!Y'all are in NC, if I recall...I understad not liking it, being from Idaho.I lived in Florida for years, it is SO different down there. rob and I weresaying just today that one of the things I really do NOT miss from the moreSouthern area is some of the bugs...red ants, fleas, cockroaches...none ofthose here. We DO have bugs, yeah, there is something they call a "potatobug", looks like a solid red ladybug, They're Ok but very prolific for abouta month. And there are ticks, but they're the big brown dog ticks not theitty bitty red deer ticks that carry lymes, and of course there are skeeters, here, there, everywhere...but all in all the bugs here don't "bug"me half as much as the bugs there did! And where we are the is almost NOlight at night other then the moon and stars, which are SO big they'reincredible! And I saw the first lightning bugs the other night...YAY!, ILove those! And the quiet...it is SO lovely and quiet!Sure, tell Mark there is a place for him here...if he's your bro he's gottabe a great person to know...maybe we can then entice Cassy to come here too..start an MS commune...wouldn't that be fun!!!Hugs All y'all!!!Akiba (watching vampires on the history channel...gonna need my woobie tokeep nightmares away...)-------Original Message-------From: Val LeeDate: 6/9/2007 11:59:17 PMTo:....

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I do remember Sharon.I was jus telling Mindy about that and my large calves.I

sent you a email reply about how I called the ALS/MD clinic in S.F. And a pic of

my ugly foot.lol.Did you get it?I thought before I posted it to the group,dont

wanna expose them to the group.Rofl.lol.Maybe I should show Mindy.What you think

Mindy?. So you can see what im talkn about.The specialist asked me too if I have

always had this high of arches,I told him no.I have had an high arch but not

this bad,I think all the muscle is gone and maybe thats why there floppy,I

dunno. Thanks for this post though everyone.Ms and MD,wow.That is not a good

combo.I couldnt imagine. Lots of luv,cassy

[wobbletowalk@...] wrote:

Did I answer you Mindy about my nephews? If not, I'll answer you again :) No,

they don't have Charcot Marie Tooth MD. I can't remmeber exactly what it is but

I know it's rare and I think it's a cross between Beckers and Duchennes. I'm

going to email Greg and ask him.

Mindy do you have sisters? Have any of you been tested to see if you are carry

the gene? Greg has 3 sisters and the last I heard was 2 were tested and 1

declined. The 2 who were tested do NOT carry the gene. Greg is the only one of

the three boys who has children. I don't know if his girls have been tested or

not.

Cassy I think you would be wise to pursue this especially since you have the

large calves. Did you read my other post (yesterday) about Greg and the large

calves?

I think Greg suggested you contact the Muscular Dystropy Association. Do you

remember what he said when we asked him before? I'm going to email him again.

hugs)))

Sharon

" Happiness is not a destination. It is a method of life. " -Burton Hills

Re: I'm speechless!!

Hi Mindy,do you mind if I ask how your brother was dxd with Charcot

Marie Tooth.Awile back the rematologist I seen gave me a big packet w/ MD info

and had asked if I had been checked,she recomended the specialist do a muscle

biopsy.Well, he said i didnt need one because my blood tests were ok.So it was

totally dismissed,then I was sent to my PT who specializes in neuro diseases and

she had asked if I had been checked for Charcot Marie Tooth.I told her no and

the whole story so she spoke to a good friend of hers that has it.She said it

took her many yrs. To be dx'd and she has symptoms similiar to mine.She also

said her friend has similiar looking feet as mine.I have extremely high arches

and they kinda jus flop,I also have extremely large calves.Im jus

wondering,wondering if the docs are missn sumthn or thinkn thats not the case

due to normal ck levels and all that.Thanks. Luv ya, cassy

[mindythornyahoo (DOT) com] wrote:

Sharon,

Do your nephews have Charcot Marie Tooth MD? It's one that doesn't

show up strongly until late 20's or so. That's what my father had

and my brother has (he wears braces at age 39).

Mindy

>

> Three of my nephews " got " MD when they were young adults. I have

MS and I think my father may have had it as well. My two children

show signs of MS, although my son doesn't speak it out loud. He does

have " nerve " problems and has been dxed with Ulnar Palsy. But his

legs get cramps, tightness and spasms in them after he has been

working in the heat. He has used Lynn's Spasm Oil with great

success.

>

> love

> Sharon

>

> " Happiness is not a destination. It is a method of life. " -Burton

Hills

>

> ....

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I do remember Sharon.I was jus telling Mindy about that and my large calves.I

sent you a email reply about how I called the ALS/MD clinic in S.F. And a pic of

my ugly foot.lol.Did you get it?I thought before I posted it to the group,dont

wanna expose them to the group.Rofl.lol.Maybe I should show Mindy.What you think

Mindy?. So you can see what im talkn about.The specialist asked me too if I have

always had this high of arches,I told him no.I have had an high arch but not

this bad,I think all the muscle is gone and maybe thats why there floppy,I

dunno. Thanks for this post though everyone.Ms and MD,wow.That is not a good

combo.I couldnt imagine. Lots of luv,cassy

[wobbletowalk@...] wrote:

Did I answer you Mindy about my nephews? If not, I'll answer you again :) No,

they don't have Charcot Marie Tooth MD. I can't remmeber exactly what it is but

I know it's rare and I think it's a cross between Beckers and Duchennes. I'm

going to email Greg and ask him.

Mindy do you have sisters? Have any of you been tested to see if you are carry

the gene? Greg has 3 sisters and the last I heard was 2 were tested and 1

declined. The 2 who were tested do NOT carry the gene. Greg is the only one of

the three boys who has children. I don't know if his girls have been tested or

not.

Cassy I think you would be wise to pursue this especially since you have the

large calves. Did you read my other post (yesterday) about Greg and the large

calves?

I think Greg suggested you contact the Muscular Dystropy Association. Do you

remember what he said when we asked him before? I'm going to email him again.

hugs)))

Sharon

" Happiness is not a destination. It is a method of life. " -Burton Hills

Re: I'm speechless!!

Hi Mindy,do you mind if I ask how your brother was dxd with Charcot

Marie Tooth.Awile back the rematologist I seen gave me a big packet w/ MD info

and had asked if I had been checked,she recomended the specialist do a muscle

biopsy.Well, he said i didnt need one because my blood tests were ok.So it was

totally dismissed,then I was sent to my PT who specializes in neuro diseases and

she had asked if I had been checked for Charcot Marie Tooth.I told her no and

the whole story so she spoke to a good friend of hers that has it.She said it

took her many yrs. To be dx'd and she has symptoms similiar to mine.She also

said her friend has similiar looking feet as mine.I have extremely high arches

and they kinda jus flop,I also have extremely large calves.Im jus

wondering,wondering if the docs are missn sumthn or thinkn thats not the case

due to normal ck levels and all that.Thanks. Luv ya, cassy

[mindythornyahoo (DOT) com] wrote:

Sharon,

Do your nephews have Charcot Marie Tooth MD? It's one that doesn't

show up strongly until late 20's or so. That's what my father had

and my brother has (he wears braces at age 39).

Mindy

>

> Three of my nephews " got " MD when they were young adults. I have

MS and I think my father may have had it as well. My two children

show signs of MS, although my son doesn't speak it out loud. He does

have " nerve " problems and has been dxed with Ulnar Palsy. But his

legs get cramps, tightness and spasms in them after he has been

working in the heat. He has used Lynn's Spasm Oil with great

success.

>

> love

> Sharon

>

> " Happiness is not a destination. It is a method of life. " -Burton

Hills

>

> ....

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Im in Sacramento,California. I think im wayyyyy far from you! :(

[akyba@...] wrote:

where are y'all?

Hugs

Akiba

-- Re: I'm speechless!!

Hmmm~

Great minds think alike! I was thinking the very same thing. What do ya

think, Cassy??

Yeah, I hear ya on the bug issue. Do you know, growing up, I had heard

about cockroaches. But, I had never actually seen one until I moved to the

south. I'm serious. I was in my mid-twenties before I'd seen one. Then, I

almost flipped out! Especially when I found out there were so many different

kinds. The first time I'd ever seen one fly, it freaked me out. I'd always

thought that only dirty people had cockroaches. But, in the south, anyone

can get an occasional one or two. I still believe that if your house is

infested with them...you gotta start thinking about doing some serious

housework.

Another thing I hate are the no-see-em's. I'd never heard of them either.

The are a lot like chiggers. Nasty little critters.

We've had lightning bugs out this year for quite awhile. We didn't really

have a winter this year, so all the critters and plant life got a little

confused.

And thanks for the compliment. I think you're great too!!

Love and blessings....Val

Re: I'm speechless!!

Y'all are in NC, if I recall...I understad not liking it, being from Idaho.

I lived in Florida for years, it is SO different down there. rob and I were

saying just today that one of the things I really do NOT miss from the more

Southern area is some of the bugs...red ants, fleas, cockroaches...none of

those here. We DO have bugs, yeah, there is something they call a " potato

bug " , looks like a solid red ladybug, They're Ok but very prolific for about

a month. And there are ticks, but they're the big brown dog ticks not the

itty bitty red deer ticks that carry lymes, and of course there are

skeeters, here, there, everywhere...but all in all the bugs here don't " bug "

me half as much as the bugs there did! And where we are the is almost NO

light at night other then the moon and stars, which are SO big they're

incredible! And I saw the first lightning bugs the other night...YAY!, I

Love those! And the quiet...it is SO....

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Here we have flying palo verde beetles. They can be up to 6 inches long! Here's a link if you are interested:http://phoenix.about.com/library/blpaloverdebug.htmThese bugs live in holes in the ground and feed off the roots of Palo Verde trees but I've also seen their holes around the Chilean Mesquite tree in our front yard. We do get the roaches here, too. They gross me out SO much. But there are other things that are worse here. For example, today my 12 y/o grandson saw a black widow spider on one of their toys outside. It was a baby spider and by the time he ran in to get a shoe to kill it -- it was gone. We often see black widows here though. Sharon "Happiness is not a destination. It is a method of life." -Burton Hills Re: I'm speechless!! Okie dokie then. When I get ahold of him, I'll sure let you know. He has been talkngabout

moving back west. You know, we're originally(sp? ) from Idaho. Have long winters there as well. He's used to a different culture than the one here. Can't say I blame him. I hate it here, myself. But,....

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

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LoL! Maybe his lil friends seen OR heard that one and flew off in the other

direction! LoL. They are like little aliens or something.LOL.

[akyba@...] wrote:

We had flying cucarachas where we were in Fla...nasty little buggers...I

remember one flying toward me and hitting the ceiling fan with a *ping* and

never being seen again...I rolled with laughter on That one!!!

Hugs

Akiba

No such bugs hereabout!

-- Re: I'm speechless!!

Im really getting Enticed now! Lol. :P My grandma has flying cock roaches

were she lives.Do you have them Sharon.I use to live out there were my g-ma

lives.It is considered california but is just a few miles of Arizona

We never had roaches in the house just huge ones flying outside. So gross!

Once a friend of mine came to visit and rode with my uncle,they got in his

truck to leave and all we heard was screaming and crying,we went out to see

what was goin on and she was throwing her hands around and jumped outta the

car and was running and yelling.Rofl.lol.A story to remember I still mess

with her about it.I dont think it gets any worse then a huge flying

cockroach.lol.Lots of luv,cassy

[cop.girl@...] wrote:

Hmmm~

Great minds think alike! I was thinking the very same thing. What do ya

think, Cassy??

Yeah, I hear ya on the bug issue. Do you know, growing up, I had heard about

cockroaches. But, I had never actually seen one until I moved to the south.

I'm serious. I was in my mid-twenties before I'd seen one. Then, I almost

flipped out! Especially when I found out there were so many different kinds.

The first time I'd ever seen one fly, it freaked me out. I'd always thought

that only dirty people had cockroaches. But, in the south, anyone can get an

occasional one or two. I still believe that if your house is infested with

them...you gotta start thinking about doing some serious housework.

Another thing I hate are the no-see-em's. I'd never heard of them either.

The are a lot like chiggers. Nasty little critters.

We've had lightning bugs out this year for quite awhile. We didn't really

have a winter this year, so all the critters and plant life got a little

confused.

And thanks for the compliment. I think you're great too!!

Love and blessings....Val

Re: I'm speechless!!

Y'all are in NC, if I recall...I understad not liking it, being from Idaho.

I lived in Florida for years, it is SO different down there. rob and I were

saying just today that one of the things I really do NOT miss from the more

Southern area is some of the bugs...red ants, fleas, cockroaches...none of

those here. We DO have bugs, yeah, there is something they call a " potato

bug " , looks like a solid red ladybug, They're Ok but very prolific for about

a month. And there are ticks, but they're the big brown dog ticks not the

itty bitty red deer ticks that carry lymes, and of course there are

skeeters, here, there,....

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LoL! Maybe his lil friends seen OR heard that one and flew off in the other

direction! LoL. They are like little aliens or something.LOL.

[akyba@...] wrote:

We had flying cucarachas where we were in Fla...nasty little buggers...I

remember one flying toward me and hitting the ceiling fan with a *ping* and

never being seen again...I rolled with laughter on That one!!!

Hugs

Akiba

No such bugs hereabout!

-- Re: I'm speechless!!

Im really getting Enticed now! Lol. :P My grandma has flying cock roaches

were she lives.Do you have them Sharon.I use to live out there were my g-ma

lives.It is considered california but is just a few miles of Arizona

We never had roaches in the house just huge ones flying outside. So gross!

Once a friend of mine came to visit and rode with my uncle,they got in his

truck to leave and all we heard was screaming and crying,we went out to see

what was goin on and she was throwing her hands around and jumped outta the

car and was running and yelling.Rofl.lol.A story to remember I still mess

with her about it.I dont think it gets any worse then a huge flying

cockroach.lol.Lots of luv,cassy

[cop.girl@...] wrote:

Hmmm~

Great minds think alike! I was thinking the very same thing. What do ya

think, Cassy??

Yeah, I hear ya on the bug issue. Do you know, growing up, I had heard about

cockroaches. But, I had never actually seen one until I moved to the south.

I'm serious. I was in my mid-twenties before I'd seen one. Then, I almost

flipped out! Especially when I found out there were so many different kinds.

The first time I'd ever seen one fly, it freaked me out. I'd always thought

that only dirty people had cockroaches. But, in the south, anyone can get an

occasional one or two. I still believe that if your house is infested with

them...you gotta start thinking about doing some serious housework.

Another thing I hate are the no-see-em's. I'd never heard of them either.

The are a lot like chiggers. Nasty little critters.

We've had lightning bugs out this year for quite awhile. We didn't really

have a winter this year, so all the critters and plant life got a little

confused.

And thanks for the compliment. I think you're great too!!

Love and blessings....Val

Re: I'm speechless!!

Y'all are in NC, if I recall...I understad not liking it, being from Idaho.

I lived in Florida for years, it is SO different down there. rob and I were

saying just today that one of the things I really do NOT miss from the more

Southern area is some of the bugs...red ants, fleas, cockroaches...none of

those here. We DO have bugs, yeah, there is something they call a " potato

bug " , looks like a solid red ladybug, They're Ok but very prolific for about

a month. And there are ticks, but they're the big brown dog ticks not the

itty bitty red deer ticks that carry lymes, and of course there are

skeeters, here, there,....

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Im so sorry hes in so much pain.I tried keeping my family out of the loop for

awile but it just made them worry more.I hope hes doing ok.Please let us know

how he is after you visit him.Im going to look this up.Do you know if hes on any

kind of treatment? I will be praying for him.I hope he can start to be more open

about his illness and his troubles that come along with it.Hey maybe he would

like to join the group! Lots of luv,cassy

[cop.girl@...] wrote:

Cassy~

It's called Polychondritis. I'm still trying to contact him. Looks like I'm

gonna have to write another letter. The last time he went MIA, I ended up

writing him a letter. The guy only lives about 45 minutes from me. LOL If I

don't hear from him by the end of the week, I'm going to his house. He was in a

lot of pain the last time I saw him. He made it out to be no big deal. But,

now....I'm wondering.

Thank you for being so concerned, and I'll be sure to keep you informed.

Love, Val @};-

Re: I'm speechless!!

Mindy~

Gasp! I don't know if you remember, but I posted an email about my brother

(Mark). He told me last weekend that he had been dx'd with Poly**** something or

other. Man, I wish I knew how it....

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We were there for a bit over 2 years. BTW I *also* found out I was pregnant (at age 42) on April Fools Day. Hugs Akiba -- Re: I'm speechless!! April fools Day.Ahh.what a day to be dx'd.I probably would have said your jus playn a prank hu? Cuz its april fools. Lol..Could never forget that day.How long did you live in Washington STATE? Im sure you have said but these days I have mush for brains.Lots of luv,cassy[akyba@...] wrote:It was just before my MS dx. Same Dr that sent me to the neuro that Dx'd myMS, Dr Chandler, in Washington State, he referred me to Dr Price, who didthe MRI and Dx'd me on April Fool's day, 2004HugsAkiba-------Original Message-------From: cassandra workmnDate: 6/9/2007 9:28:29 PMTo: MSersLife Subject: Re: I'm speechless!!Was that before ms Akiba? Before you were dx'd? Did they do any genetictesting or biopsys? We should make a story section?Do we have one? Whatchathink Sharon? I dunno,just sounds cool,were us oldies can write our storythen when the newbies come they can read them,then post theres,we sure wouldhave alot of stories.Lots of love, cassy[akyba@...] wrote:They thought I might have CMT so they tested me for it. Was the first time Id ever heard of it.hugsAkiba-------Original Message-------From: cassandra workmnDate: 6/9/2007 2:40:55 PMTo: MSersLife Subject: Re: I'm speechless!!Hi Mindy,do you mind if I ask how your brother was dxd with Charcot MarieTooth.Awile back the rematologist I seen gave me a big packet w/ MD info andhad asked if I had been checked,she recomended the specialist do a musclebiopsy.Well,he said i didnt need one because my blood tests were ok.So itwas totally dismissed,then I was sent to my PT who specializes in neurodiseases and she had asked if I had been checked for Charcot Marie Tooth.Itold her no and the whole story so she spoke to a good friend of hers thathas it.She said it took her many yrs. To be dx'd and she has symptomssimiliar to mine.She also said her friend has similiar looking feet as mineI have extremely high arches and they kinda jus flop,I also have extremelylarge calves.Im jus wondering,wondering if the docs are missn sumthn orthinkn thats not the case due to normal ck levels and all that.Thanks.Luv yacassy[mindythorn] wrote:Sharon, Do your nephews have Charcot Marie Tooth MD? It's one that doesn't show up strongly until late 20's or so. That's what my father had and my brother has (he wears braces at age 39). Mindy>> Three of my nephews "got" MD when they were young adults. I have MS and I think my father may have had it as well. My two children show signs of MS, although my son doesn't speak it out loud. He does have "nerve" problems and has been dxed with Ulnar Palsy. But his legs get cramps, tightness and spasms in them after he has been working in the heat. He has used Lynn's Spasm Oil with great success. > > love> Sharon> > "Happiness is not a destination. It is a method of life." -Burton Hills> > > > > ....

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Woww.Thats crazy Akiba! Well,what a day to remember hu?lol.. 2 yrs. Ago a friend

of mine who was pregnant ( i knew she was pregnant she jus didnt have an

ultrasound yet) well,she called me and told me she was having TWINS I totally

freaked out and congratulated her and was excited and she was acting panicky so

she says after all that April Fools! OmG! I didnt even realize it was April

Fools Day to catch on.lol..I cursed her for that one.lol.Then we had a real good

laugh. So,are you into pranks that day? Lol..Did your hubby think you were

pranking him when you found out you were pregnant?

[akyba@...] wrote:

We were there for a bit over 2 years. BTW I *also* found out I was pregnant

(at age 42) on April Fools Day.

Hugs

Akiba

-- Re: I'm speechless!!

Hi Mindy,do you mind if I ask how your brother was dxd with Charcot Marie

Tooth.Awile back the rematologist I seen gave me a big packet w/ MD info and

had asked if I had been checked,she recomended the specialist do a muscle

biopsy.Well,he said i didnt need one because my blood tests were ok.So it

was totally dismissed,then I was sent to my PT who specializes in neuro

diseases and she had asked if I had been checked for Charcot Marie Tooth.I

told her no and the whole story so she spoke to a good friend of hers that

has it.She said it took her many yrs. To be dx'd and she has symptoms

similiar to mine.She also said her friend has similiar looking feet as mine

I have extremely high arches and they kinda jus flop,I also have extremely

large calves.Im jus wondering,wondering if the docs are missn sumthn or

thinkn thats not the case due to normal ck levels and all that.Thanks.Luv ya

cassy

[mindythorn@...] wrote:

Sharon,

Do your nephews have Charcot Marie Tooth MD? It's one that doesn't

show up strongly until late 20's or so. That's what my father had

and my brother has (he wears braces at age 39).

Mindy

>

> Three of my nephews " got " MD when they were young adults. I have

MS and I think my father may have had....

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Woww.Thats crazy Akiba! Well,what a day to remember hu?lol.. 2 yrs. Ago a friend

of mine who was pregnant ( i knew she was pregnant she jus didnt have an

ultrasound yet) well,she called me and told me she was having TWINS I totally

freaked out and congratulated her and was excited and she was acting panicky so

she says after all that April Fools! OmG! I didnt even realize it was April

Fools Day to catch on.lol..I cursed her for that one.lol.Then we had a real good

laugh. So,are you into pranks that day? Lol..Did your hubby think you were

pranking him when you found out you were pregnant?

[akyba@...] wrote:

We were there for a bit over 2 years. BTW I *also* found out I was pregnant

(at age 42) on April Fools Day.

Hugs

Akiba

-- Re: I'm speechless!!

Hi Mindy,do you mind if I ask how your brother was dxd with Charcot Marie

Tooth.Awile back the rematologist I seen gave me a big packet w/ MD info and

had asked if I had been checked,she recomended the specialist do a muscle

biopsy.Well,he said i didnt need one because my blood tests were ok.So it

was totally dismissed,then I was sent to my PT who specializes in neuro

diseases and she had asked if I had been checked for Charcot Marie Tooth.I

told her no and the whole story so she spoke to a good friend of hers that

has it.She said it took her many yrs. To be dx'd and she has symptoms

similiar to mine.She also said her friend has similiar looking feet as mine

I have extremely high arches and they kinda jus flop,I also have extremely

large calves.Im jus wondering,wondering if the docs are missn sumthn or

thinkn thats not the case due to normal ck levels and all that.Thanks.Luv ya

cassy

[mindythorn@...] wrote:

Sharon,

Do your nephews have Charcot Marie Tooth MD? It's one that doesn't

show up strongly until late 20's or so. That's what my father had

and my brother has (he wears braces at age 39).

Mindy

>

> Three of my nephews " got " MD when they were young adults. I have

MS and I think my father may have had....

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Let us hope that he can get the best possible medical care! The site

that I found, and sent to the list seemed to suggest that accurate diag

nosis and appropriate treatment were ESSENTIAL! Highest hopes for

him, Val, and LOVE in heaps headed your way and his,

n Rojas5915@...

Re: I'm speechless!!Cassy...This is not for Charcot Marie Tooth but another form of MD. Have you had your liver enzymes checked? The reason I ask, I had a girlfriend from college (Melody) and she became a lab technician. Now she had always had these really muscular legs and calves (everyone thought she was an athlete). Anyways, she was at the lab one night..bored..and decided to test herself on some things. Well, her liver enzyme test came back at a nearly impossible figure. She tested again with the same result. The next day she called her Dr. and she was diagnosed with a form of MD with some name that starts with a PolyXXXXXX. 13 years late, she is in a wheelchair and has spent most of her life on some horrible drugs (can't have children because of them).When you guys mentioned the large calves, I thought of Melody.Anyways, if you suspect you have some....

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Not another BUG talk!!! I just had one of these on one of my other

groups, lol. It must be that time of year!!! I'm not a fan of bugs,

especially spiders, bees, anything I can't identify and anything that

bites. I can tolerate flies, but they are annoying. Ants are okay

because I can step on them if need be.

As for ticks and cockroaches we have ticks and fleas in NY but no

cockroaches at least in this part of NY. I don't know about the city.

I did however have a runin with both when I lived in Virginia for a

few months right after being married in 86 as my hubby was in the

Army at the time.

Not a fan of the cockroach, sneaky little creatures, and some are

bigger than your little finger!!!! That's not a good thing!!! As for

the ticks, EEEEWWWWW!!! I had never seen one until one morning I woke

up, was alone in the apt we had rented. Hubby was still living on

base as he was still in basic training. Had just gotten our

furniture, a bed, couch, chair, and t.v. WooHoo, livin the high life,

thanks to Rent a Center, lol!!!! I got up, saw this black round thing

on my thigh, thought it was a smushed chocolate chip. Yep, eatin

cookies in bed!!! I tried to flick it off with my finger and legs

came out of it. You could have heard me scream for miles!!!!! I don't

know how but I actually grabbed it with my OWN hand and pulled it out

of my OWN leg!!!!! I don't know where it went and at that point I

didn't care, I ran for my life, lol!!! I ran to the neighbors house

who I was kind of friends with, she was another military wife and she

laughed at me. Then she cleaned it for me and made sure I got the

head out. Thank goodness I did, because I guess they can do some big

time damage.

Needless to say I didn't sleep in the bedroom for quite a while,

since we didn't think to get a vacuum!!!!! I slept on the couch, but

everytime the lights went out I could hear the roaches scurrying

about. NASTY!!!!

So, that's my bug story!!!!!

Hugs,

Peggy

> >

> > > >

> >

> > > > Mindy.I wont chime in on the....

> >

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269.8.13/842 - Release Date: 6/9/07 10:46 AM

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Release Date: 6/9/07 10:46 AM

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His getting treatment is what I'm worried about. He's one of those types that thinks he's okay as long as there are no symptoms. Being a man, he is very unlikely to pursue this much futher. It's going to take another relapse before he does anything.

Thank you n for your prayers and concern.

Love and blessings...Val

Re: I'm speechless!!Cassy...This is not for Charcot Marie Tooth but another form of MD. Have you had your liver enzymes checked? The reason I ask, I had a girlfriend from college (Melody) and she became a lab technician. Now she had always had these really muscular legs and calves (everyone thought she was an athlete). Anyways, she was at the lab one night..bored..and decided to test herself on some things. Well, her liver enzyme test came back at a nearly impossible figure. She tested again with the same result. The next day she called her Dr. and she was diagnosed with a form of MD with some name that starts with a PolyXXXXXX. 13 years late, she is in a wheelchair and has spent most of her life on some horrible drugs (can't have children because of them).When you guys mentioned the large calves, I thought of Melody.Anyways, if you suspect you have some....

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.472 / Virus Database: 269.8.13/843 - Release Date: 6/10/07 1:39 PM

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Cassy~

I don't think he's being treated at this time. In fact, the first time I had heard that he had this, was when we were at the family gathering. I don't think he has a computer right now. I wish he did. I'd have been able to get ahold of him by now. I'm sending him a letter. He should get it in the next couple of days. He needs to know that I know what he's going through. Nobody else does. (family speaking).

Thank you for your prayers. I wish I could get him to join this group. But, when I suggested it, he didn't sound interested. He seems to have the idea that support groups are nothing but pity parties. Even when I tried to explain what it was really all about. I just hate it when people think they know everything. He bought into to that "genius" label and thinks there's nothing more to learn. Bah!! Being a genius doesn't make one perfect. I'm sure there's a lot we could teach him.

Love and blessings...Val @};-

Re: I'm speechless!!Mindy~Gasp! I don't know if you remember, but I posted an email about my brother (Mark). He told me last weekend that he had been dx'd with Poly**** something or other. Man, I wish I knew how it....

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Ewwww....Gross!

We have bugs that look like that here. I wonder if that's what they are? I hope not.

Luv, Val

Re: I'm speechless!!Okie dokie then. When I get ahold of him, I'll sure let you know. He has been talkngabout moving back west. You know, we're originally(sp? ) from Idaho. Have long winters there as well. He's used to a different culture than the one here. Can't say I blame him. I hate it here, myself. But,....

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

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I tend to lie low that day I think Rob knows better then to prank me after everything else that has happened on that dayif he wants to live, that is.... Hugs Akiba -- Re: I'm speechless!! Woww.Thats crazy Akiba! Well,what a day to remember hu?lol.. 2 yrs. Ago a friend of mine who was pregnant ( i knew she was pregnant she jus didnt have an ultrasound yet) well,she called me and told me she was having TWINS I totally freaked out and congratulated her and was excited and she was acting panicky so she says after all that April Fools! OmG! I didnt even realize it was April Fools Day to catch on.lol..I cursed her for that one.lol.Then we had a real good laugh. So,are you into pranks that day? Lol..Did your hubby think you were pranking him when you found out you were pregnant?[akyba@...] wrote:We were there for a bit over 2 years. BTW I *also* found out I was pregnant(at age 42) on April Fools Day.HugsAkiba-------Original Message-------From: cassandra workmnDate: 6/10/2007 10:14:07 PMTo: MSersLife Subject: Re: I'm speechless!!April fools Day.Ahh.what a day to be dx'd.I probably would have said yourjus playn a prank hu? Cuz its april fools. Lol..Could never forget that dayHow long did you live in Washington STATE? Im sure you have said but thesedays I have mush for brains.Lots of luv,cassy[akyba@...] wrote:It was just before my MS dx. Same Dr that sent me to the neuro that Dx'd myMS, Dr Chandler, in Washington State, he referred me to Dr Price, who didthe MRI and Dx'd me on April Fool's day, 2004HugsAkiba-------Original Message-------From: cassandra workmnDate: 6/9/2007 9:28:29 PMTo: MSersLife Subject: Re: I'm speechless!!Was that before ms Akiba? Before you were dx'd? Did they do any genetictesting or biopsys? We should make a story section?Do we have one? Whatchathink Sharon? I dunno,just sounds cool,were us oldies can write our storythen when the newbies come they can read them,then post theres,we sure wouldhave alot of stories.Lots of love, cassy[akyba@...] wrote:They thought I might have CMT so they tested me for it. Was the first time Id ever heard of it.hugsAkiba-------Original Message-------From: cassandra workmnDate: 6/9/2007 2:40:55 PMTo: MSersLife Subject: Re: I'm speechless!!Hi Mindy,do you mind if I ask how your brother was dxd with Charcot MarieTooth.Awile back the rematologist I seen gave me a big packet w/ MD info andhad asked if I had been checked,she recomended the specialist do a musclebiopsy.Well,he said i didnt need one because my blood tests were ok.So itwas totally dismissed,then I was sent to my PT who specializes in neurodiseases and she had asked if I had been checked for Charcot Marie Tooth.Itold her no and the whole story so she spoke to a good friend of hers thathas it.She said it took her many yrs. To be dx'd and she has symptomssimiliar to mine.She also said her friend has similiar looking feet as mineI have extremely high arches and they kinda jus flop,I also have extremelylarge calves.Im jus wondering,wondering if the docs are missn sumthn orthinkn thats not the case due to normal ck levels and all that.Thanks.Luv yacassy[mindythorn] wrote:Sharon, Do your nephews have Charcot Marie Tooth MD? It's one that doesn't show up strongly until late 20's or so. That's what my father had and my brother has (he wears braces at age 39). Mindy>> Three of my nephews "got" MD when they were young adults. I have MS and I think my father may have had....

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eeeeeewwwwwwww happy birthday sharon hugs akiba -- Re: I'm speechless!! Here we have flying palo verde beetles. They can be up to 6 inches long! Here's a link if you are interested:http://phoenix.about.com/library/blpaloverdebug.htmThese bugs live in holes in the ground and feed off the roots of Palo Verde trees but I've also seen their holes around the Chilean Mesquite tree in our front yard. We do get the roaches here, too. They gross me out SO much. But there are other things that are worse here. For example, today my 12 y/o grandson saw a black widow spider on one of their toys outside. It was a baby spider and by the time he ran in to get a shoe to kill it -- it was gone. We often see black widows here though. Sharon "Happiness is not a destination. It is a method of life." -Burton Hills Re: I'm speechless!!Okie dokie then. When I get ahold of him, I'll sure let you know. He has been talkngabout moving back west. You know, we're originally(sp? ) from Idaho. Have long winters there as well. He's used to a different culture than the one here. Can't say I blame him. I hate it here, myself. But,.... Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

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Yeah, but you didn't used to be...I was raised in Los Altos, Cal, practically grew up in the country club...the same club that I recently found costs almost $100,000.00 to join!!!!! BOYHOWDY how my life has changed...for the better!!! Hugs Akiba -- Re: I'm speechless!! Im in Sacramento,California. I think im wayyyyy far from you! :([akyba@...] wrote:where are y'all?HugsAkiba-------Original Message-------From: cassandra workmnDate: 6/10/2007 6:46:18 PMTo: MSersLife Subject: Re: I'm speechless!!You and Rob are awesome Akiba.What loving people! Now if you bulid a cabinbe prepared to see me and my girls REAL soon.lol.How many hours is it fromme to you? Please dont say days.lol.[akyba@...] wrote:I told Rob about Mark, he said "Bring him on! I need the help!" He's alreadymaking plans to enclose the porch to make another bedroom or build a smallcabin...so Yes, Mark would be a welcome addition to the "family"HugsAkiba-------Original Message-------From: Val LeeDate: 6/10/2007 12:43:26 PMTo: MSersLife Subject: Re: I'm speechless!!Hmmm~Great minds think alike! I was thinking the very same thing. What do yathink, Cassy??Yeah, I hear ya on the bug issue. Do you know, growing up, I had heardabout cockroaches. But, I had never actually seen one until I moved to thesouth. I'm serious. I was in my mid-twenties before I'd seen one. Then, Ialmost flipped out! Especially when I found out there were so many differentkinds. The first time I'd ever seen one fly, it freaked me out. I'd alwaysthought that only dirty people had cockroaches. But, in the south, anyonecan get an occasional one or two. I still believe that if your house isinfested with them...you gotta start thinking about doing some serioushousework.Another thing I hate are the no-see-em's. I'd never heard of them either.The are a lot like chiggers. Nasty little critters.We've had lightning bugs out this year for quite awhile. We didn't reallyhave a winter this year, so all the critters and plant life got a littleconfused.And thanks for the compliment. I think you're great too!!Love and blessings....Val Re: I'm speechless!!Y'all are in NC, if I recall...I understad not liking it, being from Idaho.I lived in Florida for years, it is SO different down there. rob and I weresaying just today that one of the things I really do NOT miss from the moreSouthern area is some of the bugs...red ants, fleas, cockroaches...none ofthose here. We DO have bugs, yeah, there is something they call a "potatobug", looks like a solid red ladybug, They're Ok but very prolific for abouta month. And there are ticks, but they're the big brown dog ticks not theitty bitty red deer ticks that carry lymes, and of course there are skeeters, here, there, everywhere...but all in all the bugs here don't "bug"me half as much as the bugs there did! And where we are the is almost NOlight at night other then the moon and stars, which are SO big they'reincredible! And I saw the first lightning bugs the other night...YAY!, ILove those! And the quiet...it is SO....

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I'm supposedly a genius, too, was even approached by mensa. So what do I know? That I have a lot to learn. I've travelled the world, lived overseas, fluent in two languages, was CEO of my own corporation at 29, and I'm just getting started. Mark reminds me of me years ago, when someone told me I needed to learn humility as one of my life lessons. My reply? "Humility? But I'm the most humble person I know!" BOYHOWDY did I eat THOSE words later on, when I truly DID learn humility... Hugs Akiba bring him on, I'll teach him a thing or two... -- Re: I'm speechless!! Cassy~ I don't think he's being treated at this time. In fact, the first time I had heard that he had this, was when we were at the family gathering. I don't think he has a computer right now. I wish he did. I'd have been able to get ahold of him by now. I'm sending him a letter. He should get it in the next couple of days. He needs to know that I know what he's going through. Nobody else does. (family speaking). Thank you for your prayers. I wish I could get him to join this group. But, when I suggested it, he didn't sound interested. He seems to have the idea that support groups are nothing but pity parties. Even when I tried to explain what it was really all about. I just hate it when people think they know everything. He bought into to that "genius" label and thinks there's nothing more to learn. Bah!! Being a genius doesn't make one perfect. I'm sure there's a lot we could teach him. Love and blessings...Val @};- Re: I'm speechless!!Mindy~Gasp! I don't know if you remember, but I posted an email about my brother (Mark). He told me last weekend that he had been dx'd with Poly**** something or other. Man, I wish I knew how it....

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Hehe too cute...Yes, ticks are nasty little bug/gers...I've gotten used to them, though, just pluck 'em and "dispose" of them. I've only seen one spider since we've been here, and saw my first snake the other day while mowing the field...a pretty little rainbow snake Hugs Akiba -- Re: I'm speechless!! Not another BUG talk!!! I just had one of these on one of my other groups, lol. It must be that time of year!!! I'm not a fan of bugs, especially spiders, bees, anything I can't identify and anything that bites. I can tolerate flies, but they are annoying. Ants are okay because I can step on them if need be.As for ticks and cockroaches we have ticks and fleas in NY but no cockroaches at least in this part of NY. I don't know about the city. I did however have a runin with both when I lived in Virginia for a few months right after being married in 86 as my hubby was in the Army at the time.Not a fan of the cockroach, sneaky little creatures, and some are bigger than your little finger!!!! That's not a good thing!!! As for the ticks, EEEEWWWWW!!! I had never seen one until one morning I woke up, was alone in the apt we had rented. Hubby was still living on base as he was still in basic training. Had just gotten our furniture, a bed, couch, chair, and t.v. WooHoo, livin the high life, thanks to Rent a Center, lol!!!! I got up, saw this black round thing on my thigh, thought it was a smushed chocolate chip. Yep, eatin cookies in bed!!! I tried to flick it off with my finger and legs came out of it. You could have heard me scream for miles!!!!! I don't know how but I actually grabbed it with my OWN hand and pulled it out of my OWN leg!!!!! I don't know where it went and at that point I didn't care, I ran for my life, lol!!! I ran to the neighbors house who I was kind of friends with, she was another military wife and she laughed at me. Then she cleaned it for me and made sure I got the head out. Thank goodness I did, because I guess they can do some big time damage.Needless to say I didn't sleep in the bedroom for quite a while, since we didn't think to get a vacuum!!!!! I slept on the couch, but everytime the lights went out I could hear the roaches scurrying about. NASTY!!!!So, that's my bug story!!!!!Hugs,Peggy> > > > > >> > > > > > Mindy.I wont chime in on the....> >> > > > > > ----------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM> > > > > > ----------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM> > > > > > > > > > ----------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM> > > > > > > > > > --------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM> > > > > > > > > > > --------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.472 / Virus Database: 269.8.13/842 - Release Date: 6/9/07 10:46 AM>

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Wow Akiba! Ceo of your own corporation? So,you know ya gotta share! Im dying to

know.What did you do? What ended up happening? Remember I got mush for brains so

sorry if you have already posted bout it but I think its new news to me.

luv ya,cassy

[akyba@...] wrote:

I'm supposedly a genius, too, was even approached by mensa. So what do I

know? That I have a lot to learn. I've travelled the world, lived overseas,

fluent in two languages, was CEO of my own corporation at 29, and I'm just

getting started.

Mark reminds me of me years ago, when someone told me I needed to learn

humility as one of my life lessons. My reply? " Humility? But I'm the most

humble person I know! " BOYHOWDY did I eat THOSE words later on, when I truly

DID learn humility...

Hugs

Akiba

bring him on, I'll teach him a thing or two...

-- Re: I'm speechless!!

Cassy~

I don't think he's being treated at this time. In fact, the first time I

had heard that he had this, was when we were at the family gathering. I don

t think he has a computer right now. I wish he did. I'd have been able to

get ahold of him by now. I'm sending him a letter. He should get it in the

next couple of days. He needs to know that I know what he's going through.

Nobody else does. (family speaking).

Thank you for your prayers. I wish I could get him to join this group. But,

when I suggested it, he didn't sound interested. He seems to have the idea

that support groups are nothing but pity parties. Even when I tried to

explain what it was really all about. I just hate it when people think they

know everything. He bought into to that " genius " label and thinks there's

nothing more to learn. Bah!! Being a genius doesn't make one perfect. I'm

sure there's a lot we could teach him.

Love and blessings...Val @};-

Re: I'm speechless!!

Val.What is the name?Id like to look it up?....

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Wooowww. 100,000 to join? OmG! Thats alot of money! Now,its to bad you live all

that way now! But im happy your happy so ill forgive ya.lol.. Sounds alot nicer

over there then here in Cali anyway.

[akyba@...] wrote:

Yeah, but you didn't used to be...I was raised in Los Altos, Cal,

practically grew up in the country club...the same club that I recently

found costs almost $100,000.00 to join!!!!!

BOYHOWDY how my life has changed...for the better!!!

Hugs

Akiba

-- Re: I'm speechless!!

Hmmm~

Great minds think alike! I was thinking the very same thing. What do ya

think, Cassy??

Yeah, I hear ya on the bug issue. Do you know, growing up, I had heard

about cockroaches. But, I had never actually seen one until I moved to the

south. I'm serious. I was in my mid-twenties before I'd seen one. Then, I

almost flipped out! Especially when I found out there were so many different

kinds. The first time I'd ever seen one fly, it freaked me out. I'd always

thought that only dirty people had cockroaches. But, in the south, anyone

can get an occasional one or two. I still believe that if your house is

infested with them...you gotta start thinking about doing some serious

housework.

Another thing I hate are the no-see-em's. I'd never heard of them either.

The are a lot like chiggers. Nasty little critters.

We've had lightning bugs out this year for quite awhile. We didn't really

have a winter this year, so all the critters and plant life got a little

confused.

And thanks for the compliment. I think you're great too!!

Love and blessings....Val

Re: I'm speechless!!

Y'all are in NC, if I recall...I understad not liking it, being from Idaho.

I lived in Florida for years, it is SO different down there. rob and I were

saying just today that one of the things I really do NOT miss from the more

Southern area is some of the bugs...red ants, fleas, cockroaches...none of

those here. We DO have bugs, yeah, there is something they call a " potato

bug " ,....

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