Overwhelmed

March 27, 2004

Kathy,

I'm an OT and from talking with adults with disabilities, the most important

thing you can do is give your little a girl as normal a life as possible.

Yes, just like with us, it's important to develop a good exercise program

but, more important to develop a life. Many OT's and PT's come from a

rehabilitative frame of reference where they feel they have to fix every

little flaw in a person. I find that with long term conditions such as SMA

or CP I try to do more life style engineering after a certain age and tell

parents to come more for major changes. There is no reason to be going for

therapy if all they are doing is working on stretching and strengthening.

Other more fun activities can accomplish this without the help of therapist,

such as horseback riding, swimming, riding a bicycle, etc. Proper

positioning and movement from one postion to another during the day helps

with contractures. Assistive technology helps with accessing the

environment. Do mind me asking but, what goals are your OT and PT working

on after all these years?

H. Thiers, OTR/L

FECTS

ehthiersfects@...

Overwhelmed

I'm just wondering what everyone's routines involve. Jessie had been going

to PT/OT several times a week since she was a year old. We do stretching at

home among the many other things that go along with having SMA. It seems

like therapists, doctors and whoever else we come across is always adding

something else to our load of " things to do " Jessie is turning 11 this

week. She is becoming overwhelmed with the " things to do " . She's tired of

it and wants as normal a life as she can have. Do all of you go to therapy

and do stretching, excersizing,etc at home? Some of her friends don't even

go to therapy. We really could use some advice on this one.

March 27, 2004

Your observation is correct, positioning is just as important and often

more important than stretching. Stretching is something of a warm up

activity for the body, feels good, keeps the cramps out. Prolonged

stretching such as being in a different position such as standing, side

lying, legs out, horizontal, with or without orthotics or casts is the only

way to truly prevent contractures without active movement.

H. Thiers, OTR/L

FECTS

ehthiersfects@...

Re: Re: Overwhelmed

Hi All,

I much agree with everybody here. I used to have PT twice a week when I was

younger but now I only do it once a week and it seems to be enough. I've

noticed that positioning is maybe even more important stretching. For

example, I sometimes sleep on one side with my arm raised high above my

head. This has helped maintain the range of motion in the shoulder so that

the range of passive motion is almost complete while the range of active

motion is next to nil. And the range makes dressing and undressing much

easier.

smiles

Taya

Re: Overwhelmed

When I was younger, it was the exact same way with me. I would go to

school and after it I went to PT and OT and then I'd come home and I'd

go to bed because I was so tired. When I woke, I'd eat, do homework,

and do more exercizing. When I was 8 years old I finally complained. I

never got to go out, either because I had a dr to visit, exercizes to

do, or I was just too damn tired. My mother stopped it and we

continued what I wanted.

Through out the years I went to PT and OT here and there when I

decided it was time to go back. I stopped when I had enough. I've been

in water therapy for almost a year now. I started out at 3 times/week

during the summer and now I do it twice/week. If it becomes too much,

I tell my therapists I'm just not going to come in for a couple weeks

because I'm too stressed with everything else going on. I make up my

own schedule and routine, both at home when I feel like it and while

in the pool. I take suggestions, but I determine which ones I want to

follow and when. If you have people controlling your life, it no

longer becomes your own.

~Kendra

> I'm just wondering what everyone's routines involve. Jessie had

been going to PT/OT several times a week since she was a year old. We

do stretching at home among the many other things that go along with

having SMA. It seems like therapists, doctors and whoever else we

come across is always adding something else to our load of " things to

do " Jessie is turning 11 this week. She is becoming overwhelmed with

the " things to do " . She's tired of it and wants as normal a life as

she can have. Do all of you go to therapy and do stretching,

excersizing,etc at home? Some of her friends don't even go to

therapy. We really could use some advice on this one.

March 27, 2004

We fight this battle too and Bernie is 8. At this point, a large part of

his daily exercises are done during school (which has disadvantages too)

but allows him down time and play time when he gets home. We have a

small indoor pool where he swims every day, and I stretch him during the

night. So we don't ever 'go to therapy.'

I think the doctors and therapists are all like this. They also have

little idea of what all the other therapists are asking of you. Find

your own balance and don't let them impose guilt on you. Try to select

the things that you think are important and focus on them, within

reason. It's important to have a life.

Bettylou

> SMA. It seems like therapists, doctors and whoever else we come

> across is always adding something else to our load of " things to do "

March 29, 2004

My ortho dr told me to stop PT/OT. He read in a study that it does more HARM

than good to people w/ certain neuromuscular disorders. Besides, most of the

OTs I've seen are nowhere near creative enough to figure out a way for me to

do things! Usaully my dad is the master of creating ways for me to manuver

things. As far as PT goes, I move a lot during the day. As a result, I'm

pretty

limber. My drs keep me on as less meds as possible: Prilosec, Reglan,

Kristolose, and Zyrtec are the only meds I take everyday, the others are as

needed.

I really don't like being on a schedule. If I did all the things docs wanted

me to do, I would have even less of a normal life. My Pulmo dr wanted me to

use the Cough Assist 3 times a day whether I need it or not, I use it WHEN I

NEED IT! I do what works for me and my life yet I'm a rather healthy SMAer.

Sincerely,

s, the Unique Princess.

March 29, 2004

Every time I go in for a doctors appointment, they ask what meds I'm on and

look at me astoundedly when I say none. Hehe silly people.

*Amy*

Mother to Caitlyn Mae - born to heaven 3/26/98

Olivia Isabelle - born to earth 9/18/03

Wife to Will 11/03/95

http://community.webshots.com/user/blueyedaze

March 29, 2004

Yeah I agree with you s - it's best to do your own thing when

you want it. I only use that Vest breathing thing when I want or feel

I need it, not twice/day for 40 minutes. The only medication I'm on is

Keppra and I take it irregularly -- About 250 mg every 3 or 4 days.

I'm supposed to be on 1000mg/day. Works fine the way I take it.

I just saw the neurologist today and he said since August I haven't

lost any strength whatsoever and he just sat there puzzled that I'm

even living on my own and able to get to his office alone. He kept

asking me what I'm doing different than everyone else. I pretty much

can't see anything different except I don't do what doctors say.

Hahaha! He told me my pain is gone because it just isn't there

anymore. I told him I had that pain for 6 years and now my Keppra is

what is making it go away. He kept saying that the amount I'm on and

every few days would never do anything.

What do " professionals " know anyways? I'm still very much alive and

doing well. Who would've thought?

~Kendra

> My ortho dr told me to stop PT/OT. He read in a study that it does

more HARM

> than good to people w/ certain neuromuscular disorders. Besides,

most of the

> OTs I've seen are nowhere near creative enough to figure out a way

for me to

> do things! Usaully my dad is the master of creating ways for me to

manuver

> things. As far as PT goes, I move a lot during the day. As a

result, I'm pretty

> limber. My drs keep me on as less meds as possible: Prilosec, Reglan,

> Kristolose, and Zyrtec are the only meds I take everyday, the others

are as needed.

> I really don't like being on a schedule. If I did all the things

docs wanted

> me to do, I would have even less of a normal life. My Pulmo dr

wanted me to

> use the Cough Assist 3 times a day whether I need it or not, I use

it WHEN I

> NEED IT! I do what works for me and my life yet I'm a rather healthy

SMAer.

>

> Sincerely,

>

> s, the Unique Princess.

>

March 31, 2004

Can you imagine their reaction when I ask them to write me a statement for

sick leave so can I show the document to my boss? -Taya

Re: Re: Overwhelmed

Every time I go in for a doctors appointment, they ask what meds I'm on and

look at me astoundedly when I say none. Hehe silly people.

*Amy*

Mother to Caitlyn Mae - born to heaven 3/26/98

Olivia Isabelle - born to earth 9/18/03

Wife to Will 11/03/95

http://community.webshots.com/user/blueyedaze

April 11, 2004

At 01:07 PM 04/11/2004 -0500, you wrote:

>>Hi Carra, welcome. I have no doubt that you will be glad you joined this

>>group. I know that educating myself on this subject was the best choice I

>>ever made regarding my daughters health and wellbeing. I have been able to

>>confidently opt not to vaccinate and support my reasons with much

>>indisputable evidence. I also have no fear of disease when I know how many

>>options there are other than vaccines. Only you can make the choices, but

>>educating ourselves is the only way to start. We all know that the doctors

>>aren't going to fill us in. You can't help but question why they don't at

>>least make sure we understand the dangers. I was never, ever told that

>>there were deadly toxins in vaccines. I think that is a pretty important

>>fact to disclose, don't you? Not to mention the way they bombard us with

>>advertising insinuating it is cruel not to vaccinate. Really twists the

>>truth.

>>

>

>I'm still new to this but is there no law that says they have to disclose

>that type of information to you?

Of course there is a law but it is not enforced.

Why do they tell to watch your fish intake

>when you're pregnant (because of mercury) then turn around and inject it

>into your newborn?

and into you - flu vaccine they push on pregnant woman has mercury

Rhogam for RH neg women has mercury (and I might add criminal to be giving

it at all to pregnant women as they are injecting anitbodies that can kill

your fetus)

I'm still very overwhelmed by all of the information out

>there. It does seem fairly obvious though that this isn't a smart choice. I

>am still confused as to wich vaccines have mercury. Do some doctors uae

>vaccines that don't contain deadly toxins? Are these safe?

All vaccines are dangerous - the antigens alone are dangerous (the bacteria

& viruses)

The adjuvants - aluminum in many of them are dangerous

Mercury in many of them still and never was recalled in those that had

before that aren't being made with it now.

They have substituted 2PE which has had no safety testing.

I will send a brief summary that is a little outdated since they took out

mercury or decreased mercury in more recent vaccines (although were and are

still using up stocks)

No doctors don't use some that are safer. They are cluelss or purposefully

misleading oyu.

Encourage you to take my next class ;-)

>

>Thank you all for your sharing your information and knowledge,

>

>Carra (momma to 12/03)

>

Thanks Carra for the questions

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

Sheri Nakken, R.N., MA, Classical Homeopath

Vaccination Information & Choice Network, Nevada City CA & Wales UK

$$ Donations to help in the work - accepted by Paypal account

vaccineinfo@... voicemail US 530-740-0561

(go to http://www.paypal.com) or by mail

Vaccines - http://www.nccn.net/~wwithin/vaccine.htm

Vaccine Dangers On-Line course - http://www.nccn.net/~wwithin/vaccineclass.htm

Homeopathy On-Line course - http://www.nccn.net/~wwithin/homeo.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL

OR LEGAL ADVICE. THE DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

******

" Just look at us. Everything is backwards; everything is upside down.

Doctors destroy health, lawyers destroy justice, universities destroy

knowledge, governments destroy freedom, the major media destroy information

and religions destroy spirituality " .... Ellner

April 11, 2004

hi carra,

> <snip> I'm still very overwhelmed by all

> of the information out

> there. It does seem fairly obvious though that this

> isn't a smart choice. I

> am still confused as to which vaccines have mercury.

> Do some doctors uae

> vaccines that don't contain deadly toxins? Are these

> safe?

i'm pretty sure most of us were once at the stage of

being totally overwhelmed! once you start questioning

one thing, be it vaccines, allopathic 'treatment' in

general, schools, or anything else, you'll eventually

start questioning everything, and rightly so. it is a

great waking up process, frightening at times, but

you'll emerge so much stronger out of it! getting rid

of your fears (of diseases mainly) is probably your

number one goal. simply read this list, and read

sheri's site and john's site whale.to, and you will no

doubt lose fear of diseases, because there isn't one

that can't be treated.

all vaccines contain potentially deadly toxins. it

just depends whether they kill in the first generation

or in generations to come. the epidemic of autism is,

in my not so humble opinion, almost entirely due to

mass vaccination over a few generations. so, no, there

is not a single vaccine that is safe.

:-)

claudia

=====

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" The mind is like a parachute. In order to function, it first has to open. "

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April 11, 2004

Carra Milikien <clmilikien@...> wrote:

I'm still new to this but is there no law that says they have to disclose

that type of information to you? Why do they tell to watch your fish intake

when you're pregnant (because of mercury) then turn around and inject it

into your newborn?

These are the kind of things that made me start to question it all.

I'm still very overwhelmed by all of the information out

there. It does seem fairly obvious though that this isn't a smart choice.

It is overwhelming at first, but just take in what you can. At least you have

made the important decision to become more educated on it all. You would think

that if doctors truly believed in the safety of vaccines they would have no

problem disclosing the dangers. Especially as they are in a profession that

supposedly cares about their clients.

I

am still confused as to wich vaccines have mercury. Do some doctors uae

vaccines that don't contain deadly toxins? Are these safe?

I do not know the ingredients, but the group website has all that information in

the files. Regardless of whether they have mercury in them or not, I personally

have come to the conclusion no vaccines are safe. Some are worse than others.

But all of them have at least one substance that I would not inject into a human

body without concerns.

.

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

Find local movie times and trailers on Movies.

March 28, 2006

Thanks, Jill!

Yours for better letters,

Kate Gladstone

Handwriting Repair and the World Handwriting Contest

handwritingrepair@...

http://learn.to/handwrite, http://www.global2000.net/handwritingrepair

325 South Manning Boulevard

Albany, New York 12208-1731 USA

telephone 518/482-6763

AND REMEMBER ...

you can order books through my site!

(Amazon.com link -

I get a 5% - 15% commission on each book sold)

March 28, 2006

Thanks, Jill!

Yours for better letters,

Kate Gladstone

Handwriting Repair and the World Handwriting Contest

handwritingrepair@...

http://learn.to/handwrite, http://www.global2000.net/handwritingrepair

325 South Manning Boulevard

Albany, New York 12208-1731 USA

telephone 518/482-6763

AND REMEMBER ...

you can order books through my site!

(Amazon.com link -

I get a 5% - 15% commission on each book sold)

March 28, 2006

Thanks, Jill!

Yours for better letters,

Kate Gladstone

Handwriting Repair and the World Handwriting Contest

handwritingrepair@...

http://learn.to/handwrite, http://www.global2000.net/handwritingrepair

325 South Manning Boulevard

Albany, New York 12208-1731 USA

telephone 518/482-6763

AND REMEMBER ...

you can order books through my site!

(Amazon.com link -

I get a 5% - 15% commission on each book sold)

March 28, 2006

Jill, Stop over thinking yourself, post as much or as little as you want. I haven't found any of your posts too much, just relax and enjoy the forum. Make sure you read the rules when you get a chance. Its okay to think out loud, most of us do it anyway. Beth jillipep <jillipep@...> wrote: So many messages! All of you are so interesting, I hope I will beforgiven for wearing out my welcome as a newcomer? I realized as I looked over the digests that my name was showing up perhaps toofrequently...I hadn't realized I could be so chatty!

There are so many posts I want to respond to, but I am going to try tofigure out a way to condense my thoughts so as not to take up so much space, out of consideration for everyone else. I realize everyone may not want to hear me 'thinking out loud'. :-)BTW, if you're reading this: HAPPY BIRTHDAY, KATE! I realize I'm late, but I went back to your website and saw that you were born on March 19th...sorry to've missed it, I always like to remember birthdays if I know them.Cheers!Jill

New Messenger with Voice. Call regular phones from your PC and save big.

March 28, 2006

Jill, Stop over thinking yourself, post as much or as little as you want. I haven't found any of your posts too much, just relax and enjoy the forum. Make sure you read the rules when you get a chance. Its okay to think out loud, most of us do it anyway. Beth jillipep <jillipep@...> wrote: So many messages! All of you are so interesting, I hope I will beforgiven for wearing out my welcome as a newcomer? I realized as I looked over the digests that my name was showing up perhaps toofrequently...I hadn't realized I could be so chatty!

There are so many posts I want to respond to, but I am going to try tofigure out a way to condense my thoughts so as not to take up so much space, out of consideration for everyone else. I realize everyone may not want to hear me 'thinking out loud'. :-)BTW, if you're reading this: HAPPY BIRTHDAY, KATE! I realize I'm late, but I went back to your website and saw that you were born on March 19th...sorry to've missed it, I always like to remember birthdays if I know them.Cheers!Jill

New Messenger with Voice. Call regular phones from your PC and save big.

March 28, 2006

Jill, Stop over thinking yourself, post as much or as little as you want. I haven't found any of your posts too much, just relax and enjoy the forum. Make sure you read the rules when you get a chance. Its okay to think out loud, most of us do it anyway. Beth jillipep <jillipep@...> wrote: So many messages! All of you are so interesting, I hope I will beforgiven for wearing out my welcome as a newcomer? I realized as I looked over the digests that my name was showing up perhaps toofrequently...I hadn't realized I could be so chatty!

There are so many posts I want to respond to, but I am going to try tofigure out a way to condense my thoughts so as not to take up so much space, out of consideration for everyone else. I realize everyone may not want to hear me 'thinking out loud'. :-)BTW, if you're reading this: HAPPY BIRTHDAY, KATE! I realize I'm late, but I went back to your website and saw that you were born on March 19th...sorry to've missed it, I always like to remember birthdays if I know them.Cheers!Jill

New Messenger with Voice. Call regular phones from your PC and save big.

March 28, 2006

You may post as much or as little as you like. Please make yourself

feel comfortable Jill.

Tom

Administrator

So many messages! All of you are so interesting, I hope I will be

forgiven for wearing out my welcome as a newcomer? I realized as I

looked over the digests that my name was showing up perhaps too

frequently...I hadn't realized I could be so chatty!

There are so many posts I want to respond to, but I am going to try

to figure out a way to condense my thoughts so as not to take up so

much space, out of consideration for everyone else. I realize

everyone may not want to hear me 'thinking out loud'. :-)

BTW, if you're reading this: HAPPY BIRTHDAY, KATE! I realize I'm

late, but I went back to your website and saw that you were born on

March 19th...sorry to've missed it, I always like to remember

birthdays if I know them.

Cheers!

Jill

March 28, 2006

Hi Jill,

I agree... please write as much and how you like... It is nice to read your points of view.

Lida

Jill,

Stop over thinking yourself, post as much or as little as you want. I haven't found any of your posts too much, just relax and enjoy the forum. Make sure you read the rules when you get a chance. Its okay to think out loud, most of us do it anyway.

Beth

jillipep <jillipep@...> wrote:

So many messages! All of you are so interesting, I hope I will beforgiven for wearing out my welcome as a newcomer? I realized as I looked over the digests that my name was showing up perhaps toofrequently...I hadn't realized I could be so chatty! There are so many posts I want to respond to, but I am going to try tofigure out a way to condense my thoughts so as not to take up so much space, out of consideration for everyone else. I realize everyone may not want to hear me 'thinking out loud'. :-)BTW, if you're reading this: HAPPY BIRTHDAY, KATE! I realize I'm late, but I went back to your website and saw that you were born on March 19th...sorry to've missed it, I always like to remember birthdays if I know them.Cheers!Jill

New Messenger with Voice. Call regular phones from your PC and save big.

May 9, 2007

>

> Hi everyone.

>

> I read through all the posts tonight for new members and printed

out the diet plan for when I go shopping tomorrow. I feel so

overwhelmed, I know it will come in time and I will get used to it.

I really want to stick to this diet very strictly for a long time!

Indefinitly if it helps me.

==>It can be quite overwhelming my friend. Make changes to your diet

gradually. If you cut out too many fibres at once it will cause

constipation so take it step by step. The basis of this diet are the

basis of life-long health.

>

> I know I must have systemic Candida. I am not feeling well at all

and have been to about 7 doctors to find out why all my hair is

falling out and why I feel so sick all the time. I do know that I

have like 50x's more yeast then the normal person on my face and

scalp - and I am tired of taking diflucan which is not clearing up my

problems. I sure hope this helps. I have all the symptoms of

Candida along with visible candida yeast on my skin through a wood

exam. I am tired, headaches, blurred vision and I can honestly say I

feel as though I am dying.

>

> Anyhow I am hopeful that I can feel better.

==>You can feel better like so many other members. To give yourself

a lift read some Success Stories:

http://www.healingnaturallybybee.com/success/success.php

==>Also you can read Bee's Personal Candida Story which is in our

Group's Files (left menu) - scroll past all of the Folders to the

Files and it will be there in alphabetical order.

I wish you the very best,

Bee

May 9, 2007

I totally understand what you mean about being overwhelmed. I'm right there with

you. I had scrambled eggs in coconut oil for breakfast this morning, actually

they were delicious. Make sure the coconut oil you buy is a good kind, it has to

actually smell like coconut. You will pay a little more for it. (health food

store) Let me know what you end up buying for your meals. Thanks,

heavensbreathnursery <heavensbreathnursery@...> wrote: Hi

everyone.

I read through all the posts tonight for new members and printed out

the diet plan for when I go shopping tomorrow. I feel so overwhelmed,

I know it will come in time and I will get used to it. I really want

to stick to this diet very strictly for a long time! Indefinitly if it

helps me.

I know I must have systemic Candida. I am not feeling well at all and

have been to about 7 doctors to find out why all my hair is falling out

and why I feel so sick all the time. I do know that I have like 50x's

more yeast then the normal person on my face and scalp - and I am tired

of taking diflucan which is not clearing up my problems. I sure hope

this helps. I have all the symptoms of Candida along with visible

candida yeast on my skin through a wood exam. I am tired, headaches,

blurred vision and I can honestly say I feel as though I am dying.

Anyhow I am hopeful that I can feel better.

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May 9, 2007

>

> I totally understand what you mean about being overwhelmed. I'm right

there with you. I had scrambled eggs in coconut oil for breakfast this

morning, actually they were delicious. Make sure the coconut oil you

buy is a good kind, it has to actually smell like coconut. You will pay

a little more for it. (health food store) Let me know what you end up

buying for your meals.

==>Hi . I have tried many different kinds of coconut oil and some

that do not smell like coconuts are still good. I am currently using

Mountain Rose Herbs' Virgin Coconut Oil and it has definitely been

proven to be good yet it doesn't smell like coconuts. See our Coconut

Oil Survey done by Jackie which includes smell:

http://www.healingnaturallybybee.com/articles/coconut5.php

Bee

December 11, 2007

Hi a,

Congratulations!

Could you not give up the job it it proved too stressful?

Nicola

>

> Sorry this is so long and I don't even know what I am looking

for.input I

> guess. In the end I realize it's a decision I have to make and my

guess is

> that I will take the job.

>

> Blessings,

>

> a

>

December 11, 2007

Hi Nicola,

It's a one-year contract so once I sign I am locked in for a year.

a

>Hi a,

>Congratulations!

>Could you not give up the job it it proved too stressful?

>Nicola

>

> Sorry this is so long and I don't even know what I am looking

for.input I

> guess. In the end I realize it's a decision I have to make and my

guess is

> that I will take the job.

>

> Blessings,

>

> a

>

December 11, 2007

Hey a,

Wow. I totally understand the double edged sword here. I have to say

that I believe work is very good when we are going through any kind of

stress. I think it is vitally important to stay occupied and

productive. If we are combatting anxiety, it is extra important. Too

much time just fuels the obsessive thoughts and the anxiety. I think

the question is not whether to work...but if THIS is the right job. If

you go back to work - it would be nice to find something that you are

passionate about and that will promote a feeling of well being and

pride. The job sounds fantastic...but the travel may be a glitch. On

the other hand, the challenge may be just what you need.

I have a question about your PMS... You have a period every week or

just PMS? If it is not followed by a period, how can you know it's

PMS? I wish you the best with your decision a. I think you are

right about the God thing. He can put things right in our lap when we

need them most....for more than one reason. Turn this over to him and

you will get your answer.

Take good care,

December 11, 2007

Hi ,

Thank you for your input and I think you are right. It may be just what I

need and who am I to say no to something God provided. Just the thought of

taking this job provides SUCH relief regarding our finances. And it's only a

year in which I may only have to travel one time or two maybe.

I don't have a period anymore since I have had a hysterectomy. I call it PMS

because I do think it's hormones. At first it was 4 to 5 days every 28 days

and the symptoms were worse. Then the " cycles " started getting shorter and

shorter until I was down to 18 days with 11 of those " PMS " . And then I

started working with a doctor and natural hormone cream (before I found this

group) and the " PMS " got shorter and shorter but then the non-PMS got

shorter to and now I have been stuck at a 7-day cycle with 2 to 3 days " PMS "

for about 6 or 7 weeks now. It's definitely cyclical and I am pretty sure

it's hormones and the symptoms are the same that I used to have when I did

have PMS before having a period (water retention, abdominal distention,

anxiety, irritability, moody, anger, etc.).

a

>>Hey a,