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Hi Clara, Glad you made it! You'll be surfing around this board in no time. I'm

not sure how to help, but I click on messages on the left yellow strip.Click on

a message I what to read. If the message title has a Re: before, it's a reply to

a previos message. You can scroll back looking for the same title without the

Re: that will be the origanal message. At the top and bottom of each page you

can go back to other pages of questions and answers. Now I just probably made

you more confused. :o) Welcome glad you finally made it.

New member

Hi everyone. I am newly diagnosed (known for a while, though) with

HMS and awaiting confirmation of hypermobile EDS (EDS III).

I don't normally put in a message just to say hello, but I can't work

this board and I am hoping someone will come to my rescue!

I can find all the replies once I have located the beginning of the

message, but how on earth do you find the original question when all

you have is the reply?! I am going off my head trying to read this

thing.

Hope you can rescue me. Oh, and hi to , I am Clara/Clarabel from

the EDNF and HMS boards... Hi.

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> Hi everyone. I am newly diagnosed (known for a while, though) with

> HMS and awaiting confirmation of hypermobile EDS (EDS III).

>

> I don't normally put in a message just to say hello, but I can't

work

> this board and I am hoping someone will come to my rescue!

>

> I can find all the replies once I have located the beginning of the

> message, but how on earth do you find the original question when

all

> you have is the reply?! I am going off my head trying to read this

> thing.

>

> Hope you can rescue me. Oh, and hi to , I am Clara/Clarabel

from

> the EDNF and HMS boards... Hi.

Wow, sound complicated to work. I htink you have to come every day

else you lose track of what there is... would hate to just pop in

once a month and try to unravel all that!

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Hi Clara,

Welcome ot the CEDA family!!! Glad you found us, sorry you are having

trouble with the messages. Hopefully someone else can give yu some advice on

the message thing, I am not too good with some of this stuff. I do think you

have to just keep going back untill you find the original, unless you search

the archives. Hope this helps.

Hugs,

Ginley

VEDS in Buffalo, NY

WNY EDNF

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Re: New member

Wow, sound complicated to work. I htink you have to come every day

else you lose track of what there is... would hate to just pop in

once a month and try to unravel all that!

Clara - at the yahoogroups.com board where CEDA is located, you can skim the

messages to see if there is something of importance to you. If there is, you

can do a search for that topic and all the emails pertaining to that will

come up in date order. You can also search for old topics that way to.

I get all of my email thru outlook by day and time they arrive so it's much

easier for me to read them.

Good luck and welcome to this wonderful group!

Bonnie Heintskill

EDS variant (symptoms from CEDS, HEDS, VEDS, and others)

Milwaukee WI area

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Hi Clara!

Welcome indeed!

To get through the messages, the best thing to do is to log on to the

yahoogroups page located here:

http://groups.yahoo.com/group/ceda/

and go to the message archive and type in a topic. You'll get all messages

related to that in terms of discussions previously tackled but really, the

best thing to do is to start a topic of your own and look for the replies as

they come into your mailbox. We welcome all types of discussion, even if

it's been done before! Often old topics can have some new input.

Welcome Clara, it's good to have you among the family!

Jill

Welcome ot the CEDA family!!! Glad you found us, sorry you are having

trouble with the messages. Hopefully someone else can give yu some advice

on

the message thing, I am not too good with some of this stuff. I do think

you

have to just keep going back untill you find the original, unless you search

the archives. Hope this helps.

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  • 1 year later...
Guest guest

Welcome, Sabi to the group.

I'm sure you'll find everyone here to be great. I don't know how much help we can be in finding you Doctors, since you are in Austrailia, but the support will always be here for you.

What kinds of treatments are you receiving? I wonder how much it differs from here in the States.

Looking forward to getting to know you.

Jo

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Welcome, Sabi to the group.

I'm sure you'll find everyone here to be great. I don't know how much help we can be in finding you Doctors, since you are in Austrailia, but the support will always be here for you.

What kinds of treatments are you receiving? I wonder how much it differs from here in the States.

Looking forward to getting to know you.

Jo

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Dawn,

Welcome to the group, I'm Lori. My RSD started in my right knee too, but has now spread through my whole body. I had reconstructive surgery and the RSD developed from that. Where do you live and how long have you had RSD? This is a wonderful group, I look forward to getting to know you better.

Lori

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Sabi,

Nobody's pain is insignificant, please don't feel that way. We are here to comfort you, to support you, to offer just somebody to talk to...and for us to have somebody to talk to. My sisters say the same thing when they talk to me on the phone. They will be complaining about something...whatever happens on any given day...and then they apologize and say how they shouldn't dump all this on me, or that it is nothing compared to what I'm going through, but I tell them that is not true. Anybody's problems are important to them...and if I am their friend it is important to me too. They are not trying to minimize what I"m going through, they just need someone to talk to about their problems too. I could say the same thing, that there are so many people in the world worse off than I am, and that is so true. But my problems and my pain are not lessened by that. I hope I am explaining this right...it is hard to put in an e-mail...but I hope you understand what I mean.

<hugs> Lori

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Welcome Faith,

Thank you for telling us a little about yourself and your family.

How are you enjoying being grandparents? My 24 year old daughter (one of five children ranging in age from 19-29) had a baby boy in December and we are thrilled about it.

It sounds as if you may need a Dr. to deal specifically with your RSD. Where do you live, maybe someone in the group can help you find someone who deals with RSD. You should not be trying to live without pain medications unless that is the choice you've made.

Glad to meet you.

Jo

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Welcome Faith,

Thank you for telling us a little about yourself and your family.

How are you enjoying being grandparents? My 24 year old daughter (one of five children ranging in age from 19-29) had a baby boy in December and we are thrilled about it.

It sounds as if you may need a Dr. to deal specifically with your RSD. Where do you live, maybe someone in the group can help you find someone who deals with RSD. You should not be trying to live without pain medications unless that is the choice you've made.

Glad to meet you.

Jo

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Hi, I,m Dawn L. and Iam from N.Y. I worked in New Jersey until I injured my knee in 2002. Welcome to the group.faithb_69 wrote:

Hi Chrystine. I'm from PA. We're not too far from each other. Faith

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Hi, I,m Dawn L. and Iam from N.Y. I worked in New Jersey until I injured my knee in 2002. Welcome to the group.faithb_69 wrote:

Hi Chrystine. I'm from PA. We're not too far from each other. Faith

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Hi Faith, I am 40 years old and I have had RSD for about 2 years now. I am not married but dating someone I care about alot. I also was diagnosed with MS Feb. 2004 and the medicine I just started taking for that is horrible. I know what you mean when you say that sometimes you think your family doesn't get it. I live with a family that thinks they all have MD behind there names, and always want to tell what to do, but yet they do not understand the pain at all. I look foward to talking to you. Take care. Dawn L.faithb_69 wrote: Hi. My name is Faith. I am 41 years old & have been dealing with RSD in my left & ankle for almost 2 years. I am on crutches because the pain is too bad when I put pressure on it. I have not worked at all since I first sprained my ankle on Mothers Day 2002. I was diagnosed with RSD 5 months later. I am married, . Two children, girl, Melonie, 21; boy, Tommy, 20; Tommy has girlfriend, , 23. has 5 year old girl, Josie, and Tommy & made a grandma for the first time 2 1/2 months ago, boy, Donovan. Right now I am not on any meds. I was on Prednisone, but it made my foot swell instead of helping it to not swell. I was also on Neurontin, but it makes me feel "high" all the time & I also read an article on rsdhope.com about how it is only to be prescribed to people with epiliptic seizures, so I took

myself off of it(with my drs ok) & am now waiting for an appointment to go see what else she wants to try. The only pain meds I have been on is Tramadol, but it doesn't wok very well, so while I'm at the drs I'm going to ask her to put me on something else. Well, that's part of my history. I'll fill in more as time goes by. This is so great to have people to talk to that KNOW what I'm going through. My family just doesn't get it. I sometimes think that they don't want to. Faith

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Hi Faith, I am 40 years old and I have had RSD for about 2 years now. I am not married but dating someone I care about alot. I also was diagnosed with MS Feb. 2004 and the medicine I just started taking for that is horrible. I know what you mean when you say that sometimes you think your family doesn't get it. I live with a family that thinks they all have MD behind there names, and always want to tell what to do, but yet they do not understand the pain at all. I look foward to talking to you. Take care. Dawn L.faithb_69 wrote: Hi. My name is Faith. I am 41 years old & have been dealing with RSD in my left & ankle for almost 2 years. I am on crutches because the pain is too bad when I put pressure on it. I have not worked at all since I first sprained my ankle on Mothers Day 2002. I was diagnosed with RSD 5 months later. I am married, . Two children, girl, Melonie, 21; boy, Tommy, 20; Tommy has girlfriend, , 23. has 5 year old girl, Josie, and Tommy & made a grandma for the first time 2 1/2 months ago, boy, Donovan. Right now I am not on any meds. I was on Prednisone, but it made my foot swell instead of helping it to not swell. I was also on Neurontin, but it makes me feel "high" all the time & I also read an article on rsdhope.com about how it is only to be prescribed to people with epiliptic seizures, so I took

myself off of it(with my drs ok) & am now waiting for an appointment to go see what else she wants to try. The only pain meds I have been on is Tramadol, but it doesn't wok very well, so while I'm at the drs I'm going to ask her to put me on something else. Well, that's part of my history. I'll fill in more as time goes by. This is so great to have people to talk to that KNOW what I'm going through. My family just doesn't get it. I sometimes think that they don't want to. Faith

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lori again thank your for your email.

r u in a relationship and what type of work do you do...am trying at the moment to work out what type of work I will be able to do.... as I am not dealing with not working..... at least when I worked It took my mind off me and gave me a sense of dignity.... with nothing now I feel so incomplete..... and so lost and alone... god why didnt I marry yrs ago....dont know what is worse the pain.... the isolation... the interaction with people .... now there is no chance of meeting mr right...... ha ha.... well not really.

hope your weekend has been good.... its sunday nite 5.35 am just going to watch the news and see all the bad things in this world pass by me.... and maybe something will be good and that will brighten my day and touch my heart..... cause Im in serious need of some happyness.

Hope your app on monday goes well... and dont be afraid about katamine..... you know that by getting stressed it keeps the nerves on overtime.... and it wont help you it will just make it all worse..... I try when Im okay giving myself to the universe.... what will be will be......but stay calm.... yes sure in pain and stay calm.... the power is within to control your emotions.... says sabi on antidreppresants... what the hec do I know.... just go in and try to be calm and not afraid.... the universe or god... what ever will look after you...and maybe just maybe it might work the hospital stay.... what Im trying so badly to say is please dont give up hope.... if we do we have nothing.... we must all hope for a better life a better world.....pain and war free....

all my thoughts are with you on monday... just wish I knew the time difference...

sabiAlwayzLoRi@... wrote:

Sabi,

That is very sad about your friend saying an 18 year old has RSD. I know sometimes I feel that it is so unfair that I got this so young - and I'm 32. I could not imagine having this at 18. In this book I'm reading it says the number of cases in children are rising - that thought breaks my heart, children are so innocent and don't understand what is happening to them and have to live with this so much longer than I do....it's all so sad. I hope that you are feeling better and having a good weekend so far.

<hugs> Lori

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Well barb this is the amazing thing about down under I have just recieved your first email.

Cant explain..... feel like Im dead except for the god dam pain... it makes me know Im alive.... well if thats living....so now I get your strange response from second email which I got first....... time frame thing I spose...

Yep having a really bad day and cant talk to family and really cant talk to anyone.... Im feel Ilke Im about to explode or cry my self to death...

Am just so lifeless,,,, but in so much pain.... does that make sense ,,, dont really know who Im anymore.... wish I could take meds... but cant....have put on so much weight.... am a pig.... and feel so unatractive...

Lost my job.... but it was more... it was ment to be my future.... my business...

anyway... am so lost and feel if I say anymore I will be sorry....

thanks

nite.

sabi

ps when anyone speaks to lori pls send my love she is such a lovely person and deserves all the best as you all do.....

In god we trust.... what a load of crock... sorry Im not a believer... and now Im even worse when in pain.... he has karma to come not us.... we have gone through enoughBARBARA TORREY wrote:

Awww, Sabi. It sounds like you're having one of those absolutely awful days. Those kind of days sure make it hard to see that there are days that are relatively decent and fulfilling. When I get into one of those nasty emotional spaces, I try to focus on the fact that while RSD does in fact suck canal water, things could be worse and that I have days that life looks pretty darn good. Awfully hard tho sometimes.Would it help to make a list of things that give you pleasure (and it you find yourself drifting off into garbageland try to just bring your focus back) and then pick one or two of them to do? We're not talking superwoman kind of stuff here.....just some of the simpler things that give you even a little smile inside. I hope that today looks better to you. Barbarasabiha kasar wrote:

Hi everyone ... not the best way to introduce myself....

Have just had a day from hell in rehab.... just cried in pain and feel like Im back in kindergarden.... its just so hard not being on any meds....sometimes I can cope with the pain other times its just so over whelming I just sit there and cry... yes I know getting stressed or upset wont help but Im just so over this ....

I used to have such a good life and feel its all gone...they have told me I may be able to work part time one day in the distant future but they cant give me any guarantees......so my life consists of sleeping when I can... and maybe a visitor once or twice a week.... I have lost my job of 10 yrs and dont think I could get any lower than I feel today... no thats not true Im sure I can slip into the void a bit further....

I see everyone else going about there lives.... and having control.... I cant even control my pain and my mind (depressed if you guys havent noticed)....

Everyday is the same... rehab makes me take stuff home to read and to practice.... like looking at 82 pics and trying to work out which is a rt and which is a lt hand... kindi stuff.... and mirroring.... the newest stuff here in Australia only recently (1 yr ) found out...

For anyone interested.... I have a good book have told lori about it... www.noigroup.com explains all about rsd and crps from experts here down under... ps ::: non gov funded research and is really good at explaining about the pain cycle....stimulation etc..

Anyway just needed to get some crap out of me .... not sorry I have.....am just so frustrated with me and my life.... I never used to complain but it seems to be all I do now..

Hope someone somewhere is pain free today cause if Im in this much pain and someone else isnt free just for today.... god has got some serious explaining to do

sabi

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  • 7 months later...

>

> The below website has some devices to make a regular bicycle

> into a stationary bike:

>

>

>

> https://shop.sunrisecyclery.com/display/1068/0/

>

>

> Ted,

Thank you for the information. I didn't even know what to look for.

I'm still deciding what to do. I could go to our community pool and

swim, but the hours are so limited and it's soooooo cold outside that

the thought of swimming isn't very appealing. I need to stop making

excuses I guess.

> They do cost some dollars, but your health is a good

investment.

> I know that controlling my diabetes gets difficult at times, but

when I do,

> it feels good.

>

> I would recommend that you inquire at your local bicycle

shop

> about trainers and rollers and get their input on them.

>

>

>

> I have never used any of these devices and have no

connection to

> this company; I picked their website because it shows some products

that may

> benefit you or other members of this group.

>

> I encourage you to hang in there.

>

>

>

> Take care

>

> Ted

>

>

>

> New Member

>

>

>

>

>

> Hi. My name is

>

>

>

> I am wondering if anyone knows what you need

> to buy to convert a regular bicycle into a stationary bike

>

>

>

> I know I have a better outlook on things when I exercise.

>

> Thanks for your help.

>

>

>

>

>

>

>

>

>

>

>

>

>

> Diabetes homepage: http://groups.yahoo.com/group/diabetes/

>

> To unsubscribe to this group, send an email to:

> diabetes-unsubscribe

> Hope you come back soon!

>

>

>

>

> _____

>

>

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  • 1 year later...
Guest guest

Do you have a copy of your policy? If it is excluded it will be easy to find.

Look under weightloss or gastric bypass. If you dont find it there then call

them and have them tell you where it states it is excluded. If you don't have a

policy book ask for one. Don't trust them to give you 100% the truth remember it

is expensive and they don't want to pay. If they once said it was then maybe

they made another mistake. My insurance company mess up all the time. If it

is then proven to you well go ahead and pay it will be worth it. April

mysticpwr wrote: Hi April,

Humana initally said that they would cover it but when the clinic

submitted my application they said that my policy excluds this type of

surgery and they made a mistake. I was so upset and since then I have

gained 20- 25 more pounds. Maybe I should go back to the clinic and

have them try again with Humana? Someone mentioned Mexico and an

option...

mysticpwr

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

Want to be your own boss? Learn how on Yahoo! Small Business.

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Guest guest

Welcome to the group!!! :-) This is a great place for inspiration,

support, motivation, etc!!! :-)

grneydcajn wrote:

> I am also a new member who is equally glad to have found this group.

> I have kaiser ins. and they are paying for it for me. If I was you I

> would shop around for new insurance. I have been soooo sick the last

> couple of years that it is actually cheaper for the insurance

> company to pay for the surgery. I have just received my acceptance

> letter and I'm waiting for the packet they say will take 4 to 6

> weeks to arrive. So my mantra is hurry up and wait! I have been

> feeling so alone and isolated that your group has been a godsend for

> me. I now think in a positive mode ( need to, to heal faster for

> surgery)so now when I feel bad , I go do something nice for someone

> else and guess what? It makes me feel great!!!!!! No more depressed

> thoughts for me! Good Luck to everybody starting this journey and to

> those leading the way....Thanks for your inspiration!

>

>

>

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Welcome to the group Selina!!! I'm . I'm 3 days post op & feeling

GREAT!!! Your day will be here before you know it!!!

selina_doing_work wrote:

> 1. Name: Selina

>

> 2. City and state: Orem Utah

>

> 3. Are you a Southern California resident? n

>

> 4. Would you like to be added to our in person luncheon guest list?

> sure

>

> 3. Email address:

>

> 4. Obesity Help Profile name and/or OH URL:selina

>

> 5. Are you: Considering Surgery, Pre Op or Post Op

>

> 6. Date of WLS:7/11/06

>

> 7. Surgeon's Name:Dr. Cannon

>

> 8. Type of Surgery: Gastric bypass

>

> 9. Highest Pre Surgery Weight: 287

>

> 10. Insurance or self pay:insurance

>

> 11. What is the name of your insurance company that covered your WLS:

>

> 12.Birthdate: aug

>

> 13.Occupation: customer service

>

> 14.Hobbies: reading

>

> 15.Anything you would like the other members to know about you?

> I have been waiting to do this for 10 years now. I am very nervous.

>

>

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That last meal sounds great! haha... At this time it is vital that while that

hand has set free, you get it into a habit of doing something else, if you

haven't already, before you are able to start eating food again in your 3rd-4th

phase. It's is great not to be so wrapped up in food!

Shauna

Hye wrote:

I know what you mean Shauna. Normally, sitting here alone & bored I

would be snacking away! The thought hasn't even crossed my mind! And

it feels great! :-) It's like a hand that was holding me back has let

go!!!

We went out of town the week before I started my pre-op diet. I had all

my favorites! :-) My last meal was chicken wings & bacon cheese

fries! LOL And a mudslide for dessert.

1 week post-op

380/354/160

Shauna Thalman wrote:

> I was actually looking forward to not eating. I was sick of food and it's

effect on my life. It has taken some time to change my habits and my mental

habits of wanting to run to food... But you know, I don't miss too many things

at all. I wanted this change so badly... I was not in fear of loosing my worst

enemy! Once you start feeling the difference you will feel better and will not

miss it as much as you think. You have to take care of yourself mentally as you

are physically. It really does go hand in hand. It is sooo worth it. I

absolutely LOVE that I do not eat NEARLY as much as I used to and I am actually

getting more done because I am not spending so much time and thought on " food " .

I have to admit that I SAVORED that T-Bone Steak I ate as my last meal. Yet, I

was happy when I was done to know that it was going to be a VERY long time

before I could ever eat that much again!

>

> Best Wishes,

>

> Shauna

>

>

>

>

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

Do you Yahoo!?

Everyone is raving about the all-new Yahoo! Mail Beta.

__________________________________________________

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Guest guest

Welcome to the group Tabatha. I'm originally from GA. Used to live in

northern GA before I moved to TN. Who do you dispatch for? I used to

be a dispatcher in Fannin County when I lived in GA. I absolutely LOVED

the job!

380/344/160

booboo2175 wrote:

> 1. Name: Tabatha

>

> 2. City and state: Atlanta, GA

>

> 3. Are you a Southern California resident? No

>

> 4. Would you like to be added to our in person luncheon guest list?

> If I was closer

>

> 3. Email address: booboo2175@...

>

> 4. Obesity Help Profile name and/or OH URL: Tabatha

>

> 5. Are you: Considering Surgery, Pre Op or Post Op Pre-OP

>

> 6. Date of WLS: Not sure yet, hopefully last of August, if I can get

> these 30 pounds off

>

> 7. Surgeon's Name: Dr. Champion

>

> 8. Type of Surgery: Roux-En-Y Gastric Bypass

>

> 9. Highest Pre Surgery Weight: 501

>

> 10. Insurance or self pay: Self Pay

>

> 11. What is the name of your insurance company that covered your

> WLS: Mine was Humana, but was not covered under insurance. Got

> denied!

>

> 12.Birthdate: 02/01

>

> 13.Occupation: 911 Dispatcher

>

> 14.Hobbies: Reading, Internet, Spending time w/ family

>

>

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Guest guest

Welcome fellow GA girl! Hope you enjoy it here like I have!

" If you don't stand behind our troops,

feel free to stand in front of them "

Proud military wife to

Proud momma to , , , Jayden,

and Marielle

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