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Oh, Bonnie, how I needed someone to make me smile tonight! More

about our saga at another time. The idiot mother of 's proposed

housemate stood up the owner/agent of the house we loved so often that

said agent won't rent to us as long as other parent is involved. Then,

today, we learned that our Regional Center won't fund a one person ISL

(don't understand this since herself has the money to do so)... But

that's NOT why you made me smile; just needed to vent a bit.

I guess you and I both have TMJ. The mouth piece isn't that bad - except

that I've forgotten to put it in the denture cleanser for several nights

because I'm so ___ vain and hate the idea of buying the stuff. The device

really, really helps. Good luck with it.

Martha

Lord, how I wish things would just settle down for all of us for a long while

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yay to patty ive gotten up right after big surgerys and walked around LOL

charge pain tollerence NO WONDER mums had dental probs befor shes been doing

what you two wonderful mums do oviously LOL ellen who is smiling and

thinking of mum clenching during one of my big sagas

>

> Oh, Bonnie, how I needed someone to make me smile tonight! More

> about our saga at another time. The idiot mother of 's proposed

> housemate stood up the owner/agent of the house we loved so often that

> said agent won't rent to us as long as other parent is involved. Then,

> today, we learned that our Regional Center won't fund a one person ISL

> (don't understand this since herself has the money to do so)... But

> that's NOT why you made me smile; just needed to vent a bit.

> I guess you and I both have TMJ. The mouth piece isn't that bad -

> except

> that I've forgotten to put it in the denture cleanser for several nights

> because I'm so ___ vain and hate the idea of buying the stuff. The device

> really, really helps. Good luck with it.

> Martha

> Lord, how I wish things would just settle down for all of us for a long

> while

>

>

>

>

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Bonnie,

Glad Patty came through the surgery with flying colors. And good for her for

calling the police on the nosy neighbor! She must be one tough cookie, in all

sorts of ways! I love how she sticks up for herself and others.

And good for all of you, too, for taking that slimeball to court who sold

poor, sick Brady to Patty! I'm sure it wasn't a matter of getting the money

back as much as it was just getting the point across that he shouldn't be

treating animals like that and he shouldn't be taking advantage of people. You

go, girls!

, mom to (4)

---------------------------------

Yahoo! Mail - Helps protect you from nasty viruses.

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Bonnie,

I don't know if you recall that I had that spell where I had the trigeminal

neuralgia, I am now aware that I have a habit of doing this sideways kind of

clenching my teeth together and that the nerve pain starts up again when I

do it. I am afraid I will also be having root canals because of it, but

since the trigeminal neuralgia was sooooo bad, I am very conscious not to

clench. If I feel my teeth come together I tell myself " relax " rather than

" don't " . Of course when really stressed I am probably not aware when I am

clenching. Dr. s did a couple cranial sacral sessions with me that

have resolved the trigeminal neuralgia, but I am very conscious of not

bringing it back.

Unfortunately I am also doing something that is making me tight in my

shoulder blade, and collar bone and across my shoulder which is making my

elbow hurt to use at all, plus causing numbness in certain points in my hand

and arm. Typing makes it worse and I live on the computer for work and for

my own learning.

Kim

> Patty is doing fabulous from her surgery. We were busy taking care of the

> " princess " and by that I mean it both good and not so good ways. She went

> through the surgery and needed a little TLC. But my goodness she kept calling

> me

> for silly little things because she couldn't really move around for the first

> few days. They told us it would be six weeks of recuperation. Well, she got

> bored and now thinks she's done. This kids awesome. She doesn't take any

> pain

> meds and is off the crutches. She has to be told to stop and go sit down.

> It's that CHARGE pain tolerance thing going on. Patty's up and around again.

> Actually I think she's better than when she went in!

>

> We also had the civil court case of us suing the man who sold us her dog. If

> you remember the dog, Brady, was incredibly ill and almost died. I had never

> been to court and was scared. We won because after sitting there for over an

> hour the guy didn't even show! This was after he delayed the first date

> because he couldn't make it. So Patty will be getting her money back (not the

> $$$$ it costs us to keep her healthy but who cares) and the two are united in

> love.

>

> We also have this strange neighbor who we call the condo police. If anyone

> anywhere sneezes sideways he calls and complains. He does tons of strange

> stuff and has tried to intimidate Patty before. Anyway he knows Patty is

> deaf/blind and as she went to the mailbox this guy walked right into our

> garage

> checking everything out. This guy didn't realize that Patty can actually see.

> What

> a dip. Of course Patty, with a neighbor called the police. Love that girl.

> Make a long story short, I am thrilled that Patty takes care of herself. Oh

> yea, and they grow the police BIG out here!

>

> Add to that I now have to have two root canals done. Due to my injury and

> " stress " I apparently clench my jaw. Apparently I do it so strong that my

> teeth

> are cracking under the pressure. My gosh, I knew I clenched my jaw but not to

> that level of intensity. The x-rays are sad. And then I had to be fitted

> with this therapeutic device I'll be wearing all day. As they were getting

> the

> mold the stuff hardened on my teeth and got stuck. They had to pry it off.

> Oh what fun. I do think that gray cloud just hung over our house last week.

> I

> hate going to the dentist anyway but having them dislodge that thing was just

> horrible. So now all day I think, don't clench the jaw, don't clench the

> jaw. In my thinking guess what I do-Clench my jaw!

>

> Our good news is that since the conference in Miami and the wonderful time

> and I had he has decided we need another alone time vacation. With the

> tax

> refunds we usually give it back into the girls some way, like school bills,

> etc. But not this time. Soon we are heading off to Cancun Yippee. I am so

> excited I could just bust. My appointment for my teeth will be after the trip

> though and now I am getting nervous. I want to enjoy this one and want all

> teeth in my mouth. They can fall out after we get back.

>

> By the way, any of you shop for bathing suits in the winter? That too isn't

> fun and I bet my jaw suffered from that joy. Oh those darn mirrors.

>

> Guess that's all here. Hope everyone's doing well. The best and most

> important part of this long boring post is Patty is doing great!

>

>

>

> Bonnie, mom to a 23, Patty 21 (CHARGE) and wife to

>

>

>

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Yes when you hear the nickname is " suicide pain " one gets the idea. Like

every tooth on one side of my face had an abscess, basically that entire

half of my face hurt along the path of the entire trigeminal nerve, which is

a very large nerve, and advil did not touch it. Yeah for Dr. s fixing

whatever was putting pressure on the nerve. Now think of n's daughter

who has this, starting as a baby, I can only imagine! Kim

> Kim,

>

> Oh my goodness, I just looked up trigeminal neuralgia. Ow!

>

> Now what was I complaining about.

>

>

>

>

> Bonnie, mom to a 23, Patty 21 (CHARGE) and wife to

>

>

>

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Bonnie-

I'm so excited for you and --you both will enjoy a trip away!

Have fun. As for Patty she is such a strong lady! I'll call soon

to catch up with her. Until then, don't fret about the dentist

trip...the WARM, HOT, ocean breeze beach is waiting for you!

Take care,

Kasee

>

> Patty is doing fabulous from her surgery. We were busy taking

care of the

> " princess " and by that I mean it both good and not so good ways.

She went

> through the surgery and needed a little TLC. But my goodness she

kept calling me

> for silly little things because she couldn't really move around

for the first

> few days. They told us it would be six weeks of recuperation.

Well, she got

> bored and now thinks she's done. This kids awesome. She doesn't

take any pain

> meds and is off the crutches. She has to be told to stop and go

sit down.

> It's that CHARGE pain tolerance thing going on. Patty's up and

around again.

> Actually I think she's better than when she went in!

>

> We also had the civil court case of us suing the man who sold us

her dog. If

> you remember the dog, Brady, was incredibly ill and almost died.

I had never

> been to court and was scared. We won because after sitting there

for over an

> hour the guy didn't even show! This was after he delayed the

first date

> because he couldn't make it. So Patty will be getting her money

back (not the

> $$$$ it costs us to keep her healthy but who cares) and the two

are united in

> love.

>

> We also have this strange neighbor who we call the condo police.

If anyone

> anywhere sneezes sideways he calls and complains. He does tons of

strange

> stuff and has tried to intimidate Patty before. Anyway he knows

Patty is

> deaf/blind and as she went to the mailbox this guy walked right

into our garage

> checking everything out. This guy didn't realize that Patty can

actually see. What

> a dip. Of course Patty, with a neighbor called the police. Love

that girl.

> Make a long story short, I am thrilled that Patty takes care of

herself. Oh

> yea, and they grow the police BIG out here!

>

> Add to that I now have to have two root canals done. Due to my

injury and

> " stress " I apparently clench my jaw. Apparently I do it so strong

that my teeth

> are cracking under the pressure. My gosh, I knew I clenched my

jaw but not to

> that level of intensity. The x-rays are sad. And then I had to

be fitted

> with this therapeutic device I'll be wearing all day. As they

were getting the

> mold the stuff hardened on my teeth and got stuck. They had to

pry it off.

> Oh what fun. I do think that gray cloud just hung over our house

last week. I

> hate going to the dentist anyway but having them dislodge that

thing was just

> horrible. So now all day I think, don't clench the jaw, don't

clench the

> jaw. In my thinking guess what I do-Clench my jaw!

>

> Our good news is that since the conference in Miami and the

wonderful time

> and I had he has decided we need another alone time

vacation. With the tax

> refunds we usually give it back into the girls some way, like

school bills,

> etc. But not this time. Soon we are heading off to Cancun

Yippee. I am so

> excited I could just bust. My appointment for my teeth will be

after the trip

> though and now I am getting nervous. I want to enjoy this one and

want all

> teeth in my mouth. They can fall out after we get back.

>

> By the way, any of you shop for bathing suits in the winter? That

too isn't

> fun and I bet my jaw suffered from that joy. Oh those darn

mirrors.

>

> Guess that's all here. Hope everyone's doing well. The best and

most

> important part of this long boring post is Patty is doing great!

>

>

>

> Bonnie, mom to a 23, Patty 21 (CHARGE) and wife to

>

>

>

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Kim-

I hold tension in my back and have had pain in my shoulder for over a year

that has recently begun to interfere with activities. Yoga has helped!!

Chiro care gave minor improvements, TENS therapy helped, but yoga has been

by far the best source of relief.

I also clench but work consciously to stop myself. Who knows what I do in

my sleep or when very stressed!

Michele W

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I endorse yoga, too. It's great. Mind you, I still think my psych friend has

the true answer and we all need to throw lots of raw eggs at trees, etc. Of

course, we'd then have to find someone to clean up after us. Martha

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Michele,

Well the strange things with my face and shoulder continued. It progressed

to numbness on the left side of my face as well as the continued pain in my

shoulder and elbow and numbness in my hand. I stole Dylan's CST appt

yesterday, so I could be seen again. It was awesome! It probably took 20

minutes of intense work to get the release in my skull, then the work on the

neck, and then to the shoulder. I have held tension at the base of my skull

for years and tight shoulders - I think it finally became too much. It is

no wonder it took so much to get the release. Roy is the one who rubs my

neck when it is bad, he could not believe how it felt last night - NO KNOTS

- if he were a blind person, I think it would have felt like I were someone

totally different. I am still having minor pain in my elbow, not ready to

use it much, but I figure in a month when we follow up that he will be able

to spend more time on the elbow, assuming the neck stays so good.

Now that the release is there I am sure Yoga would make a lot more progress

with it.

Kim

> Kim-

> I hold tension in my back and have had pain in my shoulder for over a year

> that has recently begun to interfere with activities. Yoga has helped!!

> Chiro care gave minor improvements, TENS therapy helped, but yoga has been

> by far the best source of relief.

>

> I also clench but work consciously to stop myself. Who knows what I do in

> my sleep or when very stressed!

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Hmmm... making me wonder about CST for my shoulder... I'm glad you found

relief and I hope it continues to improve!

Michele W

Re: Long week/weekend

Michele,

Well the strange things with my face and shoulder continued. It progressed

to numbness on the left side of my face as well as the continued pain in my

shoulder and elbow and numbness in my hand. I stole Dylan's CST appt

yesterday, so I could be seen again. It was awesome! It probably took 20

minutes of intense work to get the release in my skull, then the work on the

neck, and then to the shoulder. I have held tension at the base of my skull

for years and tight shoulders - I think it finally became too much. It is

no wonder it took so much to get the release. Roy is the one who rubs my

neck when it is bad, he could not believe how it felt last night - NO KNOTS

- if he were a blind person, I think it would have felt like I were someone

totally different. I am still having minor pain in my elbow, not ready to

use it much, but I figure in a month when we follow up that he will be able

to spend more time on the elbow, assuming the neck stays so good.

Now that the release is there I am sure Yoga would make a lot more progress

with it.

Kim

> Kim-

> I hold tension in my back and have had pain in my shoulder for over a year

> that has recently begun to interfere with activities. Yoga has helped!!

> Chiro care gave minor improvements, TENS therapy helped, but yoga has been

> by far the best source of relief.

>

> I also clench but work consciously to stop myself. Who knows what I do in

> my sleep or when very stressed!

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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He says it started with 2 and then the twist went down til it was impacting

3 and 4 and then when it hit 5 and 6 is when it started causing problems

with the brachial nerve. It has been building up for many years (how long

have I been a parent?)

Kim

> Hmmm... making me wonder about CST for my shoulder... I'm glad you found

> relief and I hope it continues to improve!

>

> Michele W

>

> Re: Long week/weekend

>

> Michele,

>

> Well the strange things with my face and shoulder continued. It progressed

> to numbness on the left side of my face as well as the continued pain in my

> shoulder and elbow and numbness in my hand. I stole Dylan's CST appt

> yesterday, so I could be seen again. It was awesome! It probably took 20

> minutes of intense work to get the release in my skull, then the work on the

> neck, and then to the shoulder. I have held tension at the base of my skull

> for years and tight shoulders - I think it finally became too much. It is

> no wonder it took so much to get the release. Roy is the one who rubs my

> neck when it is bad, he could not believe how it felt last night - NO KNOTS

> - if he were a blind person, I think it would have felt like I were someone

> totally different. I am still having minor pain in my elbow, not ready to

> use it much, but I figure in a month when we follow up that he will be able

> to spend more time on the elbow, assuming the neck stays so good.

>

> Now that the release is there I am sure Yoga would make a lot more progress

> with it.

>

> Kim

>

>

>

>> Kim-

>> I hold tension in my back and have had pain in my shoulder for over a year

>> that has recently begun to interfere with activities. Yoga has helped!!

>> Chiro care gave minor improvements, TENS therapy helped, but yoga has been

>> by far the best source of relief.

>>

>> I also clench but work consciously to stop myself. Who knows what I do in

>> my sleep or when very stressed!

>>

>> Michele W

>>

>>

>>

>> Membership of this email support groups does not constitute membership in

> the

>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter),

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

>> information and membership, please visit http://www.chargesyndrome.ca or

> email

>> info@... .

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org or by calling 1-.

>>

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Kim,

Have you done any Tai Chi? It's wonderful.

Patty is the only one who can really release the stress in my shoulders when

she massages my neck. HURTS me even more! He tries to be gentle but

he's got iron hands.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

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I did Tai Chi for awhile and I would like to do it seriously - particularly

so that I could do it in my moments. At the time I was doing it, I had my

adolescent foster child and my own teenage son, who were not a good

combination without a grown up present, so getting Roy home on time and me

there on time was more stressful than the benefit of the class.

I have no doubt I will go back to it, simply because I feel it is essential

for my well-being.

I am not surprised that Patty can release the tension; I imagine she can

" feel " what needs done better than can. I am fortunate that Roy is

really good at knowing just where to press and how hard to get the right

response. Most people press too hard in the wrong spots and it just feels

worse.

Kim

> Kim,

>

> Have you done any Tai Chi? It's wonderful.

>

> Patty is the only one who can really release the stress in my shoulders when

> she massages my neck. HURTS me even more! He tries to be gentle but

> he's got iron hands.

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

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