Re: Greetings all

[Guest guest]

Hi Jackie,

This letter should go to the Pathology Service, that will be doing your pathology report. You must also state that you understand your implants will be labled as "Bio-Hazardous Material", and you agree to keep them labeled as such. Then, you need to make a statement releasing them (Pathology Lab) of all liability once you take possession of these items, etc. Yes, copy everyone with this letter -- for all to see!

Hope this is helpful!

Blessings,

MM / NSIF

Martha Murdock, DirectorNational Silicone Implant FoundationDallas, Texas Headquarters

----- Original Message -----

From: Jackie

Sent: Friday, May 04, 2001 9:56 PM

Subject: Greetings all

Hey there,

How is everyone doing? I'm hanging in here and waiting patiently for my surgery date altho today I was informed there may be a setback. Our nurses here are taking job action to help settle their contract. That job action includes cutting back on certain services as well as overtime. I called my PS's office today to see if it is going to effect my date of May 28th and Sue told me that it just might. They have had several cancellations from the hospital with only 1 day notice so I have to prepare my brain now for the delay in case it happens. I have been planning on being off for all of June to recoup and now I'd better put myself into another mind frame in case that gets delayed. I'll just have to wait and see.

Patty or anyone else with more expertise than me.....I was thinking I should put together a letter to my PS stating I want the implants and any scar tissue removed and to also state in the letter that I want the implants back. I thought this might be a good idea especially since he didn't sound like he was going to do any of this to begin with and I want something to back me up if need be. I firmly told him I wanted everything out of me, scar tissue and all and he quickly agreed he would do this but because he even suggested leaving it in there I have some doubts. What I need from you is the proper terminology and maybe some ideas as to how to word this letter. Should I cc a copy to my family doctor? Should I cc the lawyer who is handling the class action suit against Dow Corning? Any advise or suggestions would be greatly appreciated. Take care all, Jackie

[Guest guest]

Hi Jackie

I think its a great idea to have something from your lawyers

showing your PS before hand, and the operating nurses. My Attornies

advised me to walk out the door with my implant in hand and the scare

tissue. I was explanted in 1994, 3 months after finding out I had

M.S. And when I walked out of there, I was told the nurse didnt know,

they were to be in my hand, and were taken away by the curiour to the

Pathlogy Lab. Well it ended up being Lost for 5 days. Soooo I was

told. (Yeah Right!) Back yourself up the Best you can. This is such a

Big Conspiracy, its hard to know who to trust. I Loved my Plastic

Surgeon and now doubt his integredity. I had received the implant in

1973 or 74 it was a sample implant that the PS had given me because I

only needed one, due to not developing on one side. But when I got it

back it looked as clean as the day he put it in my body. However it

and the scare tissue were sent to the Immuno Science Lab in Southern

CA, and Dr. Kajoo found Silicone in the tissue when he did his

pathology report on it.

Good Luck in your explant Jackie.. Please try not to stress to

much on it.. Mine was a piece of cake. Not nearly as bad as I thought

it was going to be, and I think you will find that to be true with

most of the women who have been explanted. Its probably more of a

mental thing than it is a physical one. BUT WE ARE WOMEN! WE CAN DO

THIS! Take Care Jackie and God Bless, and Cover yourself, the Best you

can.

Sincerely

Debe

> Hey there,

>

> How is everyone doing? I'm hanging in here and waiting patiently

for my surgery date altho today I was informed there may be a setback.

Our nurses here are taking job action to help settle their contract.

That job action includes cutting back on certain services as well as

overtime. I called my PS's office today to see if it is going to

effect my date of May 28th and Sue told me that it just might. They

have had several cancellations from the hospital with only 1 day

notice so I have to prepare my brain now for the delay in case it

happens. I have been planning on being off for all of June to recoup

and now I'd better put myself into another mind frame in case that

gets delayed. I'll just have to wait and see.

>

> Patty or anyone else with more expertise than me.....I was thinking

I should put together a letter to my PS stating I want the implants

and any scar tissue removed and to also state in the letter that I

want the implants back. I thought this might be a good idea

especially since he didn't sound like he was going to do any of this

to begin with and I want something to back me up if need be. I firmly

told him I wanted everything out of me, scar tissue and all and he

quickly agreed he would do this but because he even suggested leaving

it in there I have some doubts. What I need from you is the proper

terminology and maybe some ideas as to how to word this letter.

Should I cc a copy to my family doctor? Should I cc the lawyer who is

handling the class action suit against Dow Corning? Any advise or

suggestions would be greatly appreciated. Take care all, Jackie

[Guest guest]

BOY I WISH I HAD BEEN ONLINE WHEN I FIRST FOUND OUT I HAD SILICONE

POISIONING.. Martha.. You are so Awesome! Always a source of Light

for all of us.. Lots and Lots of Hugs..God Bless

Debe

> Hi Jackie,

>

> This letter should go to the Pathology Service, that will be doing

your pathology report. You must also state that you understand your

implants will be labled as " Bio-Hazardous Material " , and you agree to

keep them labeled as such. Then, you need to make a statement

releasing them (Pathology Lab) of all liability once you take

possession of these items, etc. Yes, copy everyone with this letter

-- for all to see!

>

> Hope this is helpful!

>

> Blessings,

> MM / NSIF

>

> Martha Murdock, Director

> National Silicone Implant Foundation

> Dallas, Texas Headquarters

>

> ----- Original Message -----

> From: Jackie

> @y...

> Sent: Friday, May 04, 2001 9:56 PM

> Subject: Greetings all

>

>

> Hey there,

>

> How is everyone doing? I'm hanging in here and waiting patiently

for my surgery date altho today I was informed there may be a setback.

Our nurses here are taking job action to help settle their contract.

That job action includes cutting back on certain services as well as

overtime. I called my PS's office today to see if it is going to

effect my date of May 28th and Sue told me that it just might. They

have had several cancellations from the hospital with only 1 day

notice so I have to prepare my brain now for the delay in case it

happens. I have been planning on being off for all of June to recoup

and now I'd better put myself into another mind frame in case that

gets delayed. I'll just have to wait and see.

>

> Patty or anyone else with more expertise than me.....I was

thinking I should put together a letter to my PS stating I want the

implants and any scar tissue removed and to also state in the letter

that I want the implants back. I thought this might be a good idea

especially since he didn't sound like he was going to do any of this

to begin with and I want something to back me up if need be. I firmly

told him I wanted everything out of me, scar tissue and all and he

quickly agreed he would do this but because he even suggested leaving

it in there I have some doubts. What I need from you is the proper

terminology and maybe some ideas as to how to word this letter.

Should I cc a copy to my family doctor? Should I cc the lawyer who is

handling the class action suit against Dow Corning? Any advise or

suggestions would be greatly appreciated. Take care all, Jackie

>

>

[Guest guest]

NOW THAT'S WHAT I'M TALKING ABOUT! Go Sherry Z!!! Take a negative

and rather than wonder what good could come of it...MAKE something

good come of it. I finally got sick of living my life looking for

the good and it's been getting better and better (even though my

circumstances may not always be getting better and better) since I

discovered this " secret " . You go girl! -Betz

> >

> >

> >

> > Hello....

> >

> > I have been lurking for a while and thought I would take a

> moment

> > to come out of the background and say hello.

> >

>

[Guest guest]

Sharon...you have such a great attitude even when there are sad

things in your life. I pray your kids " get it " someday soon too. You

have lots of " kids " and " grandkids " on here though...lots of

friends. You are blessed. -Betz

>

> Sandy,

> Yes you can get disability for this disease. The

> first time I went to see my Rheumy he told me fill out

> your social security papers. I got in on my first try

> which here in Texas they say is unheard of, I did not

> have to use an attorney. It was a real relief to know

> that I was going to get it athlo I am 43 and disabled

> and can't work, I am finally a stay at home mom to my

> 13 yr.old son I was not there while the others were

> growing up, which I feel bad for because my son and I

> are closer than my daughter and I will ever be. It is

> hard for him to understand that I can't get out there

> and play basketball with him anymore so he does not

> play it either. I have tried to talk him into it

> because he is good, played on a team for school. If

> you are working now, and they have a program where you

> get a small check each week for being sick stay on it,

> until you can get SS. To save yourself from worrying

> about money. God has blessed me every time I needed

> not wanted but needed He was there for me. Before I

> had PA I was renting now I am buying my Mobile home

> and it Will be paid in full in 2 more years. I moved

> into it last year. After I had been off work for a

> year. It seems like when I worked (2jobs) single mom

> of 4 I never had anything now I have so many things

> that I have been blessed with, hard to say it just

> might have been this PA that brought me closer to God

> and given me the insight to see that family is more

> important than material things ever could be. I have a

> closer relationship with my 20 yr old son who I never

> thought would talk to me after he could leave home. He

> gave me so much trouble growing up and looking back I

> see it was because he wanted my attention. I was too

> busy thinking I had to work and make my children have

> a life with everything they wanted because I did

> without during my childhood.

> Back to the subject with brain fog I tend to run off

> that the mouth.For physical therapy as long as it is

> water aerobics that way there isn't any pressure on

> your joints. For the fatigue I have found that OTC

> prenatal vitamins help. I still have to take naps

> during the day, but they do help. Whatever you do DO

> NOT over work yourself, then you will be in bed for

> days. I have learned that one from experience. I am

> the type that likes to stay bust all the time. I think

> that came from the bible when I was younger, it says

> to work with your hands all you could because a day

> would come when you couldn't do it anymore. How true

> for me. I loved to cook and bake and my kids would

> always come to my house because they knew Mom had

> cooked something, now they don't come over as much

> because Mom can't do like she used to. Sad that they

> don't understand my disease, i miss them a lot and my

> grandchildren too. I just pray that one day God will

> touch their hearts and come see me again. I hope you

> find your miracle drug and you can have some of your

> life back. Remember that we are always here for you

> when you feel like no one else is there.

> Sharon

>

> __________________________________________________

>

[Guest guest]

>

>

>

> Hello....

>

> I have been lurking for a while and thought I would take a

moment

> to come out of the background and say hello.

>

> I have had psoroasis on my hands for 22 years. (Constant.

> Different Drs said it was excema, fungus, dermatitis and psoriasis)

> Over the last 5 years or so I started getting aches and pains in

my

> upper back. Though I saw a GP regularly, I attributed my pains to

> getting older. My worst symptom that I chronically expressed to

my Dr

> was fatigue. I have had debilitating fatigue that sometimes for

days

> on end I would go from my bed to the couch to my bed again. No

matter

> how much (or little) I rest....I am tired.

>

> About 5 years ago I started getting blisters on my feet and

> having extreme joint pain. Some days it was so bad I couldn't

dress

> myself because I couldn't bend my fingers. This persisted for

almost

> 3 months, effecting every joint in my body. Drs ran hundreds of

tests

> but found nothing. Then, out of the blue, the joint pain stopped.

> Though I still had blisters on my feet my joint pain was

miraculously

> gone.

>

> I lived relatively free of joint pain (other than minor aches

and

> pains) until the Spring of this year. Once again I was in the

grip of

> a nightmare. This time the pain was primarily in my upper back and

> chest cavity. Thinking I had hurt myself or slipped a disc I went

to

> see my Dr. He took x-rays. I will never forget his words " You

have

> the worst x-rays of anyone I have ever seen that is still

walking. "

> He forecast a wheelchair within the next 3 to 5 years.

>

> This began my journey of blood tests, specialists, x-rays and

> MRIs. My current diagnosis is ankylosing spondilitis/psoriatic

> arthritis. I have just had my 3rd series of MRIs and am waiting

for

> test results.

>

> I was on methotrexate for about 5 weeks but I started going

> blind. I am about to start on Enbrel.

>

> Here are my questions:

>

> 1) I have applied for Disability. Has anyone else received

disability

> for this condition?

>

> 2) Does physical therapy help with the pain? I am afraid to start

> because just vaccuming the floor can lay me up for days.

>

> 3) Does anything help with the fatigue? I feel like I am sleeping

my

> life away.

>

> Thank you

>

> Sandi

>

HI Sandi,my name is SANDY

I have just recently started on enbrel and it is really helping me.I

am going to get back on tathitian noni juice it really does help

with the fatigue,but have you ever considered that maybe you might

have sleep apenea? I have it and I didn't know it and after I was

tested and got my c-pap I was wonderful. I still have fatigue but

not near as bad as it was,I would cry because I was so tired,I

couldn't do anything but sleep.

[Guest guest]

What will it be like when I am having

> to wear that thing all night, I just am worried

> about that one thing

Hi Barb,

Learning to wear the mask at night will be one of the

easier things you'll ever learn to do (I hope). I've

been using my CPAP for six months now, and adjusted to

it almost from the start. The only thing I find

annoying about it is that blowing the air in through

my nose dries out my mouth in about one minute (I have

Sjogrens, produce very little saliva). I keep a jug of

ice water by the bed and unsnap the mask to sip when

needed. It doesn't look very attractive, so I avoid

looking at mirrors while wearing it. Good luck

warm blessings,

jane

__________________________________________________

[Guest guest]

>

> What will it be like when I am having

> > to wear that thing all night, I just am worried

> > about that one thing

>

> Hi Barb,

>

> Learning to wear the mask at night will be one of the

> easier things you'll ever learn to do (I hope). I've

> been using my CPAP for six months now, and adjusted to

> it almost from the start. The only thing I find

> annoying about it is that blowing the air in through

> my nose dries out my mouth in about one minute (I have

> Sjogrens, produce very little saliva). I keep a jug of

> ice water by the bed and unsnap the mask to sip when

> needed. It doesn't look very attractive, so I avoid

> looking at mirrors while wearing it. Good luck

>

> warm blessings,

> jane

>

> __________________________________________________

>

[Guest guest]

In a message dated 01/08/2006 13:44:49 GMT Daylight Time,

utahgoddess2000@... writes:

I have been lurking for a while and thought I would take a moment

to come out of the background and say hello.

Hi Sandi,

Its good to hear your voice. lol I take it you have had your questions

answered by now. I'm sorry to hear that you were going blind. Do they think the

MTX

was the cause of that? Is it permanent damage or will your eyes recover? I

hope that can happen.

Reading on.............

You said:

We used to have PMS parties

once a month. No men allowed.

Lol We would be putting our lives at risk if we turned up to one of those.

Just read about your problems getting into the car because of your back. I

hope the Physiotherapy works wonders for you.

You said:

I am still waiting with mixed emotions for my Enbrel funding. I

am looking forward to the relief it may bring, but not the getting

there. I have been insurance approved for the pen dispenser. But

hey....I have seen the needle it conceals. Looks like something

eskimos use to hunt. LOL

You just have to try to get past your fear of needles. That is easy for me to

say since I had no fear of them in the first place. There are quite a few in

the group who were in the exact same position, hating needles. Hopefully they

will be able to give you a few tips on how to handle it. Maybe you could think

of the needle as a toy that doesn't actually pierce your skin. It retracts as

you push it in lol and that tiny prick of pain you feel isn't actually pain

at all, it is just the tip if this toy needle is a bit

cold................................................don't tell

me............................I know,

I'm talking rubbish. lol

I hope you can manage to get past it because what your having to deal with

just now is a lot worse than an injection.

But if you decide you can't use the pen dispenser, maybe you can go out and

try catch a couple of seals. lol

Ah Sandi, I've just read the answer to my earlier question about your sight

coming back to what it was. That is good news. You are right in what you say.

Pre PA I wouldn't even take anything for a headache. I was definitely anti med.

Well, can't quite say that anymore. lol

I liked your layman's explanation of our disease. I will use that in future

if it is ok with you. One thing I have never conquered since this all started

is how to explain it to people who are interested enough to ask. Thanks for

sharing that.

I hope your Enbrel does turn up on Monday as they told you, complete with toy

injection needles. lol

Good luck,