Re: Thanks for the invite

[Guest guest]

- THANK GOD this new group has gotten you out of the lurking mode! I was hoping it would, as even I couldn't get you to post at the other one! Say, do you (or anyone else) have any hints on how to get in to see Dr. Hu? They've told me to fax my info, and I have been - since May - and all I get when I call is a rude girl saying "nope, your name isn't on her list to call for an appointment!" and that's all they'll tell me. I'm so frustrated!!!

And what are you doing .......waiting for me to schedule my surgery so we can go in to have them at the same time? LOL Seriously, how are you doing? I know that I've gotten much worse since we met. How about you? I don't get out that way much anymore. Do you ever come up this way? Maybe we could meet halfway sometime?

Hugssssss - (and don't go back to lurking!)

~~

[Guest guest]

Hi ,

I am glad to see you here and look forward to getting to know you

better. It is wonderful that you have decided to post too...I know

it is hard to jump out of the shadows...and maybe harder on an

established board...but I did learn that the the more I put into the

group, the more I got back...so I was well worth " stretching " myself

out of my comfort zone level a little.

Cyberspace makes different relationships...ironically, I felt I had

to follow up and actually meet some of my e-buddies...and I think

it's fair to say that without DianneS, Ann and Carolyn I would have

had a much grimmer experience in Boston for two weeks. I know the

positive energy of people rooting for you really helps to get you

motivated to do what needs doing...whatever it may be. For people

like us...well, there just aren't people in the neighborhood who can

really understand the experience we are all having.

I am glad you met ....I am thinking it will be awhile til I get

to meet you " left coasters " ...but who knows...maybe we can get the

idea of a get together..or in several areas on the discussion list

soon.

Nice to meet ya, Cam

> Hi Everyone

> My Name is and I have been a lurker for a couple years on

the

> other site!! I am so thankful a new one was started cause it was

> getting a little too much with the problems! I had original

harrington

> surgery in 1979 at Rush St Lukes in Chicago and I was 13! in 1983

I had

> to have one of the broken rods(Hook) taken out! Then in 1986 had

to

> have a lateral lumbar fusion, and in 1988 had an anterio/posterior

> fusion with pedicle screws from L1-L5! ANd then the rest

is

> history! over the years been tilting forward more and more! And

it

> does not help that I also had tohave both ankles fused cause of

the

> spinal erve damamge that were causing my feet to invert! I say Dr

> Serena Hu a year ago and I def have flat back and need

> surgery /osteotomies to correct everything. THis would also be

> ant/post. Needless to say I have not scheduled t yet and I need

to! I

> also had the opportunity to meet when she went to her Dr in

> WHittier! I will try to not be much of a lurker but more of a

> contribuor! Oh I live in Southern Cali near Pasadena!!! I look

> forward to learning more from this web site and maybe I can give

some

> valuable info to the group!

[Guest guest]

Hi ...

I'll see if I can get some attention from Dr. Hu.

--

> - THANK GOD this new group has gotten you out of the lurking

mode! I

> was hoping it would, as even I couldn't get you to post at the

other one!

> Say, do you (or anyone else) have any hints on how to get in to see

Dr. Hu?

> They've told me to fax my info, and I have been - since May - and

all I get

> when I call is a rude girl saying " nope, your name isn't on her

list to call for

> an appointment! " and that's all they'll tell me. I'm so frustrated!!!

> And what are you doing .......waiting for me to schedule my

surgery so

> we can go in to have them at the same time? LOL Seriously, how

are you

> doing? I know that I've gotten much worse since we met. How about

you? I

> don't get out that way much anymore. Do you ever come up this way?

Maybe we

> could meet halfway sometime?

> Hugssssss - (and don't go back to lurking!)

> ~~

[Guest guest]

,

I'm so glad you have come out of the shadows! Thank you for posting!

Txbluebelle

Kathy

> Hi Everyone

> My Name is and I have been a lurker for a couple years on the

> other site!! I am so thankful a new one was started cause it was

> getting a little too much with the problems! I had original

harrington

> surgery in 1979 at Rush St Lukes in Chicago and I was 13! in 1983 I

had

> to have one of the broken rods(Hook) taken out! Then in 1986 had

to

> have a lateral lumbar fusion, and in 1988 had an anterio/posterior

> fusion with pedicle screws from L1-L5! ANd then the rest

is

> history! over the years been tilting forward more and more! And

it

> does not help that I also had tohave both ankles fused cause of the

> spinal erve damamge that were causing my feet to invert! I say Dr

> Serena Hu a year ago and I def have flat back and need

> surgery /osteotomies to correct everything. THis would also be

> ant/post. Needless to say I have not scheduled t yet and I need

to! I

> also had the opportunity to meet when she went to her Dr in

> WHittier! I will try to not be much of a lurker but more of a

> contribuor! Oh I live in Southern Cali near Pasadena!!! I look

> forward to learning more from this web site and maybe I can give

some

> valuable info to the group!

[Guest guest]

Hi Jewels,

Welcome! I hope everybody doesn't unsubscribe from Dom's list. I was

hoping someone on his list would post an invite for this one. Do you

think it would get through or am I dreaming? I am going to personally

invite Dom. He is welcome to sell or share his kefir grains here and I

don't care what he charges. He may even sell his offer " behind my

back " . The important thing is to get kefir grains into the hands of the

masses. I'm going to need everybody's help so even if you don't

have extra kefir grains very often, let us know when you do and pass

them on.

Marilyn,

who has an experiment in the making; something totally differentOn 9/13/06, jewels5525 <juliedt25@...

> wrote:lin,Thanks for the invite. What a coinsidence I just unsubscribed from

Dom's yesterday.Look forward to more of your experiments and advice.Jewels

[Guest guest]

Hi Marilyn,

Yes, someone already posted the invite the other day I read it and

joined. I know there has been several post anti to selling, as for

sharing with the masses.

Audrey

<snippet>

I hope everybody doesn't unsubscribe from Dom's list. I was hoping

> someone on his list would post an invite for this one.

The important thing is

> to get kefir grains into the hands of the masses.

[Guest guest]

Hi Audrey,

People on the other list should be very careful how they criticize

those who sell kefir grains. After all, the only one who admits he does

so is their beloved list owner. (There are others who do but they are

staying low key. They don't want to end up with my fate.) If it is

wrong for one person to sell kefir grains it is wrong for anyone to

sell them. I don't think they realize who they are criticizing when

they brag how they have only ever given away their " gift from the

gods " . If you stop and think of it, all the good things we have

are gifts, even if we had to pay for them. So to make these wonderful

kefir grains available to more people some of us have decided to turn

it into a cottage industry. We offer a good service. We wouldn't be

able to help as many people as we do if we had to take a loss every

single time. In fact, we wouldn't be able to help very many people at

all in comparison. How many people can say they started 500 people with

kefir grains last year? Don't let the negativity on the other list get

you down. Let's move on and continue to be of service.

Marilyn,

who hopes there is no confusion about the difference between a gift and a free giftOn 9/20/06, Audrey <

Onexpresso@...> wrote:

Hi Marilyn,Yes, someone already posted the invite the other day I read it andjoined. I know there has been several post anti to selling, as forsharing with the masses.Audrey

[Guest guest]

Hi Marilyn,

Well that is what waw happening to me, I was even shipping some for no

cost of shipping before the demand got to be more then spare grains...

Audrey

>

We

> wouldn't be able to help as many people as we do if we had to take a

loss

> every single time. In fact, we wouldn't be able to help very many

people at

> all in comparison.

<snippet>>

> Marilyn,

> who hopes there is no confusion about the difference between a gift

and a

> free gift

[Guest guest]

Hi,

welcome to the group Chris.

>

> Hi all,

>

> First thanks for the invite. Its been somewhat of a relief to find

out

> I'm not the only person who doesn't seem to " have the script to life. "

>

> I hope to be able to learn from others in this group.

>

> Have a good day all,

>

> Chris

>

[Guest guest]

Hi

I invited you and others because because I have much to learn from

others with AS. I hope you find what you are looking for here and

that we can all learn from each other.

Welcome to the forum.

Tom

Administrator

Hi all,

First thanks for the invite. Its been somewhat of a relief to find

out

I'm not the only person who doesn't seem to " have the script to

life. "

I hope to be able to learn from others in this group.

Have a good day all,

Chris

[Guest guest]

Hi there, Chris. Glad to have you here posting and welcome to Secret

Society. I'm always happy to see new people join the group and

although sometimes the forum is not so busy, there are times when it

gets quite busy. It all depends on the topics being discussed at the

time and the amount of time members have at their disposal.

Have fun and feel free to begin a discussion!

Raven

>

> Hi all,

>

> First thanks for the invite. Its been somewhat of a relief to find out

> I'm not the only person who doesn't seem to " have the script to life. "

>

> I hope to be able to learn from others in this group.

>

> Have a good day all,

>

> Chris

>

[Guest guest]

Hi Roy not much going on with me still recovering from double bypass heart

surgery. I have been home sense Feb.9 just now able to walk 15 Min's straight.

Co-Moderator

Phil

> From: Roy <rsimmons2@...>

> Subject: Thanks for the invite

>

> Date: Sunday, May 24, 2009, 12:02 AM

> Would love hearing from you old guys

> again.

> Roy

>

>

[Guest guest]

Phil, I wish you a complete and quick recovery. You don't have to share this

but just curious. Has any MD suggested that Test or Arimidex contributed to

your heart attack?

Did you have any risk factors like smoking, high cholesterol or obesity?

Any advice for the rest of us?

[Guest guest]

I was a junk food junkie 35 yrs. ago never had to see a Dr. at this time was

very healthy. But I did eat a lot of junk not a good diet at all. The Heart

surgeon said on blockage was 100% and the other was 90% blocked. He said they

both were very old I never had a heart attack and in the last yr. was having a

lot of Reflux and Heartburn. Doing meds for this did not help and we checked

every thing one could check. I was on Iron pills at the time we stopped then no

help it was not the Iron. Over 35 yrs ago I was gaining weight about 30 lbs

over weight so I joined Weight Watchers and lost the weight and form then on I

eat a healthy diet.

About 27 yrs. ago I had a bad auto accident with a head injury started feeling

fatigue and had feelings of depression about 6 months later. Turns out after

being treated for Major Depression for 5 yrs this was not the problem. I had

low testosterone Dr.'s feel the low hormones had a lot to do with why my heart

was bad they kept talking about the low Growth Hormone levels I had.

I also had a birth defect in the 3rd artery it was not fully devoloped and this

is what was keeping me alive. But they don't understand how it did this. My

CHOL has allways been very good as far back as 27 yrs ago.

Still when they found I had low testoterone they did not get it right I was told

I was Primary meaning my Testis were not working right. Four yrs. ago I added

HCG to my T shots and my levels doubled so I am not Primary but Secondary.

We did an MRI and nothing showed up so they feel I am Hypopituitary do to the

head injury. It was after this that they started treating my low cortisol,

thyroid, Iron and aldosterone levels. This is when I started to feel my best.

Because of the heartburn we did a stress tests with an MRI on my heart it showed

a dark spot on the bottom of my heart that could have been blood pooling or a

bad spot on the MRI machine. So we did a 24 bit scan on my heart and this

showed blockage but not how bad it was.

To this day we don't know way I had blockage as long as I can remember I was

short of breath and Dr.'s felt is was the fatigue. Then we found I had low

Iron.

At the time I was a good 100 lbs over weight yet they said when they got me open

I had not fat around my heart or an inlarged heart. So it beats me why.

Co-Moderator

Phil

> From: _Wellbourne <testosteronesearch@...>

> Subject: Re: Thanks for the invite

>

> Date: Sunday, May 24, 2009, 3:57 PM

> Phil, I wish you a complete and quick

> recovery.  You don't have to share this but just

> curious.  Has any MD suggested that Test or Arimidex

> contributed to your heart attack?

> Did you have any risk factors like smoking, high

> cholesterol or obesity?

> Any advice for the rest of us?

>

>

>

> ------------------------------------

>

>

[Guest guest]

At 77 I qualify I guess.

Had a serpentine triple by-pass in Sayre PA in 1982 which means a single vein

was used with side hole made in the vein to the primary blockage first and

another side hole at the next best candidate site for blockage later and an end

connection to the next important artery site.

Had high cholesterol in 330 range due to family characteristics I'm pretty sure.

Once I got on the first statin drug in the mid 80's I noticed my ED developed a

jump in difficulty. Fought it with all sorts of changes is how we had sex but it

was getting worse leaving the wife unhappy.

Betty found an endocrinologist the provided her pellet hormone therapy as oral

meds could not help her. Her doctor also provided andropause therapy and I

jumped at it in 1991. ED went away for about 6-8 weeks until the higher level of

T was stabilized, he said. The ED returned as severe as before.

Dr. Irwin Goldstein of Boston Univ. then treated me in 1992 for age related ED

with trimix injection therapy and it has worked great since.

>

> Would love hearing from you old guys again.

> Roy

>

>