Re: (unknown)

[Guest guest]

Jax,

When asked why he does it Mr. never gives an

answer. Like he's a silent hero or something. He

doesn't have a relative with any MDA disease. I guess

Vicki let us know the real reason why he does it.

--- Jackie Hanan wrote:

> Nope, didn't offend me because I get the same

> impression about

> too. I loved him w/ in the early years, but

> after they split, it

> seems like became so full of himself. I

> started watching the Telethon

> this year, and couldn't stand seeing him act like a

> primo donna....[is that

> the equivalent male, to female prima donna??, LOL

> ....] I agree he was

> rude, arrogant, and acted like he could care less

> about what he was doing.

> No wonder you don't see him in any movies anymore if

> he's getting part of

> the pledge monies.

> I'm curious, does anyone know why he started Jerry's

> Kids,.....did he have a

> personal interest in it because of a family member,

> or friend w/MD?

> The lack of resources, and public coverage about

> Myositis reminds me of

> whats happening with the Transverse Myelitis people

> too. They are connected

> to MS, but are not recognized in the literature, or

> part of the MS drives.

> It's like they are out on the fringe so there isn't

> much research monies

> going to their illness. Very frustrating.....

> Well, that's my 2 cents,.... :-)

> Hugs to all,

> Jax

>

> anzavic@... wrote:

>

> >

> > Cari.... you certainly didn't offend me at all. I

> am another one who is

> > not a fan of Jerry at all. I have had the

> pleasure of meeting

> > this individual when I was very young and still

> living in Las Vegas. My

> > dad at the time was a theatrical agent so all of

> his kids could go back

> > stage and watch the shows and meet some of the

> people. This man was so

> > rude, arrogant and talk to people like they were

> trash. He is still the

> > same man today but puts on a very good act. At

> the time, Jerry

> > was saying he wasn't being paid a dime for his

> services he just wanted

> > to help out the kids and the MDA. Rodger Hedgecock

> in San Diego, (has

> > his own radio show) who loves to do investigative

> work on individuals

> > donating ones time for a cause, checked into Jerry

> and was shocked

> > to find that a very large portion of the money

> that is made goes to him.

> > It now goes into a corporation but tracing that

> back is still owned by

> > Jerry . I donate to the MDA but it is

> directly to them and not

> > through the telethon. I watched him cry on stage

> last night and

> > couldn't help thinking it was the same act as he

> puts on in Vegas. This

> > man has a super large ego and has found his money

> making nitch .... then

> > labels it " Jerry's Kids " .... Wouldn't it be

> wonderful if all the

> > companies who donated would just send there money

> into the MDA all year

> > long. Then they really would get the full amount.

> Ok, now it's my turn

> > to say ... I hope I didn't offend anyone for

> spouting off like

> > that...but in my book he's like a leech.

> >

> > Vicki

>

>

__________________________________________________

[Guest guest]

Hi Jax.... I doubt very seriously if he has any family member with a

disease. He saw an opportunity to make a lot of money in a time when

no one in the industry wanted to deal with his tantrums any longer.

The list of all the things he does to people goes on and on. He's

playing a part on the MDA cause the more money he brings in the more he

makes.

He makes very good money in Vegas which the casino doesn't mind paying

.....he dumps it all back into the tables. So the casino is really

making out.

If he didn't gamble like he does I can assure you that he wouldn't have

an act in any casino in Las Vegas.

Oooops there I go again....it just puts such a bad taste in my

mouth...that any person would want to take a percentage of such an

organization that is suppose to help people.

Are you starting to feel a bit better Jax?

I hope so....

Take care,

Vicki-pm

[Guest guest]

Cari... while I was working (gee, that seems so long ago) I had money

deducted from my paycheck every week to give to United Way. I thought

all the money was going to them... it was Rodger Hedgecock that did the

investigation and found that the money raised was going to a fund in

San Diego and being used to hire attorneys for the illegal's that come

into our country. The company that raises the money has the right to

take a percentage out for there time and efforts and then a small

percentage is actually sent to United Way. Rodger Hedgecock called

United Way and asked if they knew this was being done. They did know

but said as long as they send a percentage to United Way there was

nothing that can be done to stop it. So Mr. Hedgecock announced it to

the world...and while it's still going on it's not to the extent it was.

United Way did say that they wish everyone who wanted to contribute

would do so directly to their corporate office.

Then the full amount would go to the cause.

This man has tackled the IRS and the Welfare office in San Diego and you

can't believe what he found out. Best part is that he air's the info

for the public to hear.

I agree Cari, I think it would really be worth while to put your time

and efforts into families with JDMS.

Vicki-pm

[Guest guest]

Vicki,

You must have felt so cheated when you found out. I

didn't realize things like that go on. I did stop

giving to different police funds over the phone after

I heard a report that most of them are hoax's. I even

had a " police officer " get very angry with me once

because I wouldn't agree to send in even $10.00. I

said if he was a real police officer then he would

know that it is never a good idea to give money over

the phone. He hung up on me!!!! Oh Well!

Cari

--- anzavic@... wrote:

>

>

> Cari... while I was working (gee, that seems so long

> ago) I had money

> deducted from my paycheck every week to give to

> United Way. I thought

> all the money was going to them... it was Rodger

> Hedgecock that did the

> investigation and found that the money raised was

> going to a fund in

> San Diego and being used to hire attorneys for the

> illegal's that come

> into our country. The company that raises the money

> has the right to

> take a percentage out for there time and efforts and

> then a small

> percentage is actually sent to United Way. Rodger

> Hedgecock called

> United Way and asked if they knew this was being

> done. They did know

> but said as long as they send a percentage to United

> Way there was

> nothing that can be done to stop it. So Mr.

> Hedgecock announced it to

> the world...and while it's still going on it's not

> to the extent it was.

>

> United Way did say that they wish everyone who

> wanted to contribute

> would do so directly to their corporate office.

> Then the full amount would go to the cause.

>

> This man has tackled the IRS and the Welfare office

> in San Diego and you

> can't believe what he found out. Best part is that

> he air's the info

> for the public to hear.

> I agree Cari, I think it would really be worth while

> to put your time

> and efforts into families with JDMS.

>

> Vicki-pm

>

>

__________________________________________________

[Guest guest]

I think it's very sad that the con artists use the people like that.

They seem to know exactly what to do so they don't get in trouble. HOpe

your having a good evening.

Vicki-pm

[Guest guest]

Hi Vicki,....thats really sad to hear about how is mismanaging the

funds. It reminds me of a polio victim I knew a long time ago that was very

angry with Easter Seals, and other charitable organizations, telling me that

most of these orgs. either have so much overhead, having to pay workers, and

then some monies get pocketed, and there's little left for research. He

alleged thats why alot of the diseases haven't been cured. Heard that about

the Cancer Assoc. too.

I am feeling better today. I think it was some sort of a virus. Thanks for

asking!

Smiles, Jax

anzavic@... wrote:

..it just puts such a bad taste in my

> mouth...that any person would want to take a percentage of such an

> organization that is suppose to help people.

>

> Are you starting to feel a bit better Jax?

> I hope so....

>

> Take care,

> Vicki-pm

[Guest guest]

Jax,

Glad you are feeling better!

Hugs,

Cari

--- Jackie Hanan wrote:

> Hi Vicki,....thats really sad to hear about how

> is mismanaging the

> funds. It reminds me of a polio victim I knew a

> long time ago that was very

> angry with Easter Seals, and other charitable

> organizations, telling me that

> most of these orgs. either have so much overhead,

> having to pay workers, and

> then some monies get pocketed, and there's little

> left for research. He

> alleged thats why alot of the diseases haven't been

> cured. Heard that about

> the Cancer Assoc. too.

> I am feeling better today. I think it was some sort

> of a virus. Thanks for

> asking!

> Smiles, Jax

>

> anzavic@... wrote:

> .it just puts such a bad taste in my

>

> > mouth...that any person would want to take a

> percentage of such an

> > organization that is suppose to help people.

> >

> > Are you starting to feel a bit better Jax?

> > I hope so....

> >

> > Take care,

> > Vicki-pm

>

>

__________________________________________________

[Guest guest]

His name isnt actually Dr. Dunce. That's my pet name for him because he

lives up to it soooo well !!! All I did to get the appointment was to call

them. They are participating members with Aetna (my insurance) so all I pay

is my copay of $10.00. On top of the travel expenses of course. That is the

kicker !!! Hopkins is rated by US News and World Reports as the 2nd

best in the nation for Myositis and that helped in making my decision. I

just want answers and Ill jump through whatever hoops I have to to get them.

I feel like Im playing the Limbo lately and cant do a thing except knock down

the damn pole !!!!! The Rheumys in Orlando are a joke !!!!

" May the last sound you hear tonight be a purrrrrrrrr "

>^..^<

[Guest guest]

Hi

Headache is still with me. It's always on my left side of my head and

my left eye is blurry. Both eye's are very lazy today. I know the

myositis is in my eyes so this to will pass. What bothers me the most

is that when I have these headaches, even laying my head on the pillow

or just propping my head up and laying the backside of my head on the

pillow....causes more pain. If I don't have my head touching anything,

I do much better.

I went last Thursday for my pulmonary testing. My testing on 2-3-00

were as follows: MEP: 11 and MIP RV -15

The testing on 09-07-00 were:

MEP: 25 and MIP RV 29

I seem to have more strength in my lung muscles. She (my doctor) was

just thrilled with the testing. We'll take another test in Dec. and

hopefully it will be better. They aren't sure if this will be lasting

or it's going to be also a roller coaster ride. We'll see how it goes.

But for now I'll stay on the Enbrel....especially since it's helping my

lungs to function better.

.... I'm the same as you... I'm not one for taking medicine...in

fact I hate it. I would only take my pain meds when I needed them...

not a smart thing to do. Now I take them in the morning and at night.

It has worked out much better and I don't go through the ups and downs

with more pain like I use to.

I also continue to walk because I don't want the only muscles left to

waste away but I have to say that I feel horrible afterwards. In order

for me to go to the doctors I have to stay down at least 4 days. I

don't do any walking on those days. By Thursday night I was so fatigued

that I came home and went right to bed. I slept off and on the next

day...terrible headache, eyes burning, blurry vision, upset stomach,

weak legs, pain in the arms, back and legs, and I wanted complete quiet

so it wouldn't hurt my ears.

As for the testing in the office.... My doctors also do the same

testing. I'm rated a 5.... One month it's a 3.5 and the next it might

be a 6.5... each time is very different. The doctors have told me this

test is just something that they go by but it really means nothing as

far as how the patient is really doing. I bounce around so much.

I use to have the same thing with my head tipping it back. It has

gotten better but I still have days where I can't tip it back nor side

to side. Of course I also have osteoarthritis in my neck as well so

this might be due to that disease.

I think our bodies get use to some meds making them less

effective...this might be the case with the Ambien. It might be time

to try something else. I know I sure feel much better the next day when

I get a full, deep sleep.

Hope everyone is having a great day.

Vicki-pm

[Guest guest]

>

> Hi

>

> Headache is still with me. It's always on my left side of my head

and

> my left eye is blurry. Both eye's are very lazy today. I know the

> myositis is in my eyes so this to will pass. What bothers me the

most

> is that when I have these headaches, even laying my head on the

pillow

> or just propping my head up and laying the backside of my head on

the

> pillow....causes more pain. If I don't have my head touching

anything,

> I do much better.

>

> I went last Thursday for my pulmonary testing. My testing on 2-3-00

> were as follows: MEP: 11 and MIP RV -15

>

> The testing on 09-07-00 were:

>

> MEP: 25 and MIP RV 29

>

> I seem to have more strength in my lung muscles. She (my doctor)

was

> just thrilled with the testing. We'll take another test in Dec. and

> hopefully it will be better. They aren't sure if this will be

lasting

> or it's going to be also a roller coaster ride. We'll see how it

goes.

> But for now I'll stay on the Enbrel....especially since it's

helping my

> lungs to function better.

>

> .... I'm the same as you... I'm not one for taking

medicine...in

> fact I hate it. I would only take my pain meds when I needed

them...

> not a smart thing to do. Now I take them in the morning and at

night.

> It has worked out much better and I don't go through the ups and

downs

> with more pain like I use to.

>

> I also continue to walk because I don't want the only muscles left

to

> waste away but I have to say that I feel horrible afterwards. In

order

> for me to go to the doctors I have to stay down at least 4 days. I

> don't do any walking on those days. By Thursday night I was so

fatigued

> that I came home and went right to bed. I slept off and on the next

> day...terrible headache, eyes burning, blurry vision, upset

stomach,

> weak legs, pain in the arms, back and legs, and I wanted complete

quiet

> so it wouldn't hurt my ears.

>

Gosh- sounds mighty familiar, Vicki. Hate to say it, but I have

the same type headache today and queasy tummy. Only, my headaches

occur on right side of head- and my right eye is the lazy one! Am

supposed to go to church in am to sing in choir- now i have to eat a

little and lay down! Did NOT want to nap today!!!!

[Guest guest]

,

Can you lift your head from the pillow? When things are bad, that is a

" classic " no-can-do-easily for me. When I'm more flared swallowing is also

an adventure!!!!

Ann-Marie

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Vicki,

I used to suffer terrible migraines. Mine were due to

estrogen dominance, but this is supposed to work for

all headaches. Massage the skin between your thumb

and forefinger, with the thumb and forefinger of your

other hand. Do it gently, but firmly. Not on the

bone but there a place that the thumb of your other

hand kind of fits into. Wish I could be there to show

you! It doesn't take the headache away but it did

give me some relief from the pain. Sounds strange but

it works! Hope your headache goes away soon and that

you are feeling better. You hadn't posted for a few

days and I was worried about you. Give the massage a

try, let me know if it works.

Hugs,

Cari

--- anzavic@... wrote:

>

> Hi

>

> Headache is still with me. It's always on my left

> side of my head and

> my left eye is blurry. Both eye's are very lazy

> today. I know the

> myositis is in my eyes so this to will pass. What

> bothers me the most

> is that when I have these headaches, even laying my

> head on the pillow

> or just propping my head up and laying the backside

> of my head on the

> pillow....causes more pain. If I don't have my head

> touching anything,

> I do much better.

>

> I went last Thursday for my pulmonary testing. My

> testing on 2-3-00

> were as follows: MEP: 11 and MIP RV -15

>

> The testing on 09-07-00 were:

>

> MEP: 25 and MIP RV 29

>

> I seem to have more strength in my lung muscles.

> She (my doctor) was

> just thrilled with the testing. We'll take another

> test in Dec. and

> hopefully it will be better. They aren't sure if

> this will be lasting

> or it's going to be also a roller coaster ride.

> We'll see how it goes.

> But for now I'll stay on the Enbrel....especially

> since it's helping my

> lungs to function better.

>

> .... I'm the same as you... I'm not one for

> taking medicine...in

> fact I hate it. I would only take my pain meds when

> I needed them...

> not a smart thing to do. Now I take them in the

> morning and at night.

> It has worked out much better and I don't go through

> the ups and downs

> with more pain like I use to.

>

> I also continue to walk because I don't want the

> only muscles left to

> waste away but I have to say that I feel horrible

> afterwards. In order

> for me to go to the doctors I have to stay down at

> least 4 days. I

> don't do any walking on those days. By Thursday

> night I was so fatigued

> that I came home and went right to bed. I slept off

> and on the next

> day...terrible headache, eyes burning, blurry

> vision, upset stomach,

> weak legs, pain in the arms, back and legs, and I

> wanted complete quiet

> so it wouldn't hurt my ears.

>

> As for the testing in the office.... My doctors also

> do the same

> testing. I'm rated a 5.... One month it's a 3.5 and

> the next it might

> be a 6.5... each time is very different. The

> doctors have told me this

> test is just something that they go by but it really

> means nothing as

> far as how the patient is really doing. I bounce

> around so much.

>

> I use to have the same thing with my head tipping it

> back. It has

> gotten better but I still have days where I can't

> tip it back nor side

> to side. Of course I also have osteoarthritis in my

> neck as well so

> this might be due to that disease.

>

> I think our bodies get use to some meds making them

> less

> effective...this might be the case with the Ambien.

> It might be time

> to try something else. I know I sure feel much

> better the next day when

> I get a full, deep sleep.

>

> Hope everyone is having a great day.

>

> Vicki-pm

>

>

__________________________________________________

[Guest guest]

Hi ,

I think the ear involvement usually presents as bright red, and sometimes

swollen. I had a sore on my ear just recently and my doctor seemed to think

that it was a calcium deposit. They're common with myositis.

I know what you mean about NOT trying to be a hypochondriac....I hope our

doctors think the same :-) I wouldn't even be pursuing this RP %^ & (* if I

hadn't had several bouts of ear pain over the years and if the ENT hadn't

told me about it.

Watch the stomach pain, though. Here are a couple of links regarding ulcers

and the use of NSAIDs. http://www.sleh.com/FactSheets/fact-d12-peptic.html

http://pharminfo.com/disease/ulcers/ulcerfaq.html#u1

http://www.eaglephysicians.com/pinewsletter/articles/pud.html

hmmmmm, I didn't realize that smoking can be a factor in the development of

ulcers........?

have fun at choir practice :-)

Connie

(unknown)

>

> Vicki- I had already read about RP in Merck-- am trying to be as fast

> on the draw as you!Connie, have you/do you have any, say sores or

> anything on the outer ear?? I have had one on one ear for a long time

> now -in/on the cartilage (oh shoot- sp?). When it first occurred i

> thought it was a bug bite, but it has stayed and stayed and can get

> sore as a boil. It's not real big or visible, but sometimes is a

> little scabby. Weird. I am NOT trying to be a hypochondriac - just

> one of those odd things that have no explanation. Probably not

> related to anything at all. Also have had a fair amount of

> stomach/intestinal pain lately- i attribute it to gas build up-

> dontknkow why. Always there- hope it's not vioxx- I am not taking it

> everyday, maybe one every 3 days lately- to see. Can't win either

> way! I am off to church choir practice for the first time this

> season. I need to get out, see someone different!

> I will pray for little Hannah, - now I recall you had talked

> about her before. Thanks.

>

>

>

>

[Guest guest]

definitely had the bright ears and when he runs

around too much they still get red. When he was first

diagnosed they were flaming red. His doctor always

remarks on how his ears look whenever we go in. They

have never gotten swollen or had sores on them.

Cari

--- JHACHE wrote:

> Hi ,

>

> I think the ear involvement usually presents as

> bright red, and sometimes

> swollen. I had a sore on my ear just recently and

> my doctor seemed to think

> that it was a calcium deposit. They're common with

> myositis.

>

> I know what you mean about NOT trying to be a

> hypochondriac....I hope our

> doctors think the same :-) I wouldn't even be

> pursuing this RP %^ & (* if I

> hadn't had several bouts of ear pain over the years

> and if the ENT hadn't

> told me about it.

>

> Watch the stomach pain, though. Here are a couple

> of links regarding ulcers

> and the use of NSAIDs.

> http://www.sleh.com/FactSheets/fact-d12-peptic.html

> http://pharminfo.com/disease/ulcers/ulcerfaq.html#u1

>

http://www.eaglephysicians.com/pinewsletter/articles/pud.html

> hmmmmm, I didn't realize that smoking can be a

> factor in the development of

> ulcers........?

>

> have fun at choir practice :-)

>

> Connie

>

> (unknown)

>

>

> >

> > Vicki- I had already read about RP in Merck-- am

> trying to be as fast

> > on the draw as you!Connie, have you/do you have

> any, say sores or

> > anything on the outer ear?? I have had one on one

> ear for a long time

> > now -in/on the cartilage (oh shoot- sp?). When it

> first occurred i

> > thought it was a bug bite, but it has stayed and

> stayed and can get

> > sore as a boil. It's not real big or visible, but

> sometimes is a

> > little scabby. Weird. I am NOT trying to be a

> hypochondriac - just

> > one of those odd things that have no explanation.

> Probably not

> > related to anything at all. Also have had a fair

> amount of

> > stomach/intestinal pain lately- i attribute it to

> gas build up-

> > dontknkow why. Always there- hope it's not vioxx-

> I am not taking it

> > everyday, maybe one every 3 days lately- to see.

> Can't win either

> > way! I am off to church choir practice for the

> first time this

> > season. I need to get out, see someone different!

>

> > I will pray for little Hannah, - now I recall

> you had talked

> > about her before. Thanks.

> >

> >

> >

> >

>

>

>

__________________________________________________

[Guest guest]

Hi Cari,

I think the disease your brother in law suffers from is called

hemochromatosis. From what I have read, it is a nasty one. But the most

important thing is that he was diagnosed and that he is " donating "

blood......that is the whole key. Many people have it (mostly males, I

think) and don't know it until too much damage has been done. I happened to

read about it three years ago, before I had been diagnosed with DM. Some of

the symptoms were fatigue, muscle aches....etc. and that was what I was

having at the time. I talked my doctor into doing the extra hemoglobin

counts just to be sure. I'm glad she humored me so I could move onto

something else.

I bet Vicki could find a link on this :-) .....probably even before I push

the send key :-))

take care and hugs everyone,

Connie

(unknown)

>

> - Hope your extreme fatigue passes quickly and

> you are feeling better soon.

> Vicki - Sorry this cold is dragging on for so long. I

> worry about you living all alone. Do you have

> neighbors or friends you can rely on to help you?

>

> 's Dr. visit went well yesterday. She didn't

> lower his Prendisone dosage. I was disappointed about

> that but he is growing so fast that I guess in a way

> it is lowering. He didn't have to have labs done. He

> is always thankful for that. He was asked to run down

> the hall and back. On the way back he threw in a

> somersault and bounced right back up. We don't have

> to go back for 2 months. His Bone Density test was

> cancelled as the tech was sick. That was rescheduled

> for a few weeks from now. I am very interested in

> what that is going to show us.

>

> Help! My brother in law suffers from a disease that

> doesn't let your liver process iron correctly.

> Hemo...something. I can't remember the name. He goes

> in twice a week to have blood taken to try and lower

> his iron count. Anyway, he is 41 years old and the

> bloodletting has taken so much out of him that he is

> no longer able to work. Would he qualify for SSI?

> How would he go about getting started on the

> paperwork. Thanks in advance for any help. He hopes

> to be back to " normal " in 6 - 12 months and then he

> will just have to give blood every few months, or

> whatever his body needs to keep the iron level at a

> safe level. Right now, all he wants to do is sleep.

> Thanks and hugs,

> Cari

>

> __________________________________________________

>

[Guest guest]

My brother-in-law is one of the lucky ones. It was

caught very early, by chance, after he had blood drawn

for another reason. He has no permanent liver damage.

He should be fine once his iron level gets down to

normal. His identical twin brother went in to get

tested after Bill was diagnosed, and of course, he has

it too. but the brother is handling the blood-letting

much better and his iron rate is coming down quickly.

Bill's hasn't moved so they stepped up the

blood-letting to twice a week. His body is having a

hard time with it.

Hugs,

Cari

--- JHACHE wrote:

> Hi Cari,

>

> I think the disease your brother in law suffers from

> is called

> hemochromatosis. From what I have read, it is a

> nasty one. But the most

> important thing is that he was diagnosed and that he

> is " donating "

> blood......that is the whole key. Many people have

> it (mostly males, I

> think) and don't know it until too much damage has

> been done. I happened to

> read about it three years ago, before I had been

> diagnosed with DM. Some of

> the symptoms were fatigue, muscle aches....etc. and

> that was what I was

> having at the time. I talked my doctor into doing

> the extra hemoglobin

> counts just to be sure. I'm glad she humored me so

> I could move onto

> something else.

>

> I bet Vicki could find a link on this :-)

> .....probably even before I push

> the send key :-))

>

> take care and hugs everyone,

>

> Connie

> (unknown)

>

>

> >

> > - Hope your extreme fatigue passes quickly

> and

> > you are feeling better soon.

> > Vicki - Sorry this cold is dragging on for so

> long. I

> > worry about you living all alone. Do you have

> > neighbors or friends you can rely on to help you?

> >

> > 's Dr. visit went well yesterday. She didn't

> > lower his Prendisone dosage. I was disappointed

> about

> > that but he is growing so fast that I guess in a

> way

> > it is lowering. He didn't have to have labs done.

> He

> > is always thankful for that. He was asked to run

> down

> > the hall and back. On the way back he threw in a

> > somersault and bounced right back up. We don't

> have

> > to go back for 2 months. His Bone Density test

> was

> > cancelled as the tech was sick. That was

> rescheduled

> > for a few weeks from now. I am very interested in

> > what that is going to show us.

> >

> > Help! My brother in law suffers from a disease

> that

> > doesn't let your liver process iron correctly.

> > Hemo...something. I can't remember the name. He

> goes

> > in twice a week to have blood taken to try and

> lower

> > his iron count. Anyway, he is 41 years old and

> the

> > bloodletting has taken so much out of him that he

> is

> > no longer able to work. Would he qualify for SSI?

> > How would he go about getting started on the

> > paperwork. Thanks in advance for any help. He

> hopes

> > to be back to " normal " in 6 - 12 months and then

> he

> > will just have to give blood every few months, or

> > whatever his body needs to keep the iron level at

> a

> > safe level. Right now, all he wants to do is

> sleep.

> > Thanks and hugs,

> > Cari

> >

> > __________________________________________________

> >

[Guest guest]

Hi Cari

I have neighbors that I can call on but I rarely do. I somehow manage

to do it myself. I don't know where I pull the strength from at times.

Wow, sounds like he's on the road to recovery. That must be such

a great feeling for all of you. Give him a big hug from me... what a

trooper he and the other kids have been.

Heck, I haven't heard of the disease your brother-in-law has but I'm

sure he would qualify for state disability first then SSDI. SSI told me

I had to collect State disability for the first 6 months then I could

apply to SSI. I collected STATE for 1 year and it paid more than SSI.

Take care,

Vicki-pm

[Guest guest]

Connie... way to go girl... You beat me this time.... I didn't have a

clue as to what he had. Hope your having a great weekend.

Vicki-pm

[Guest guest]

Hi Everyone,

Hope everyone is getting some true R & R this weekend. We're going to the

Sausage Fest :-) It is a fund raiser for our kid's former K-8 grade

Catholic school. It has evolved over the last 20 years into a major

event....lots of food :-)) teen dances, carnival games, even a beer

garden.....and of course, Bingo! They raise a lot of $$ for the school and

the whole community participates. When our kids were going there, we used

to participate a lot more, but this year we're content to be

spectators....spending money on food and such :-)

I have Raynaud's as an accompaniment to my DM. In the beginning, my hands

and feet were cold to the bone! I didn't know you could feel so cold.

Since I have been on the antibiotics for the past 2 1/2 years, the Raynaud's

is much improved. I'm still careful about wearing sox a lot of the time,

but actually, most of this summer I wore sandals without sox. I haven't

worn gloves to the grocery store in a long time. My right hand looked like

" dish pan hand " in the early days. They did the white-red-blue thing, too.

Also, my fingertips felt like I had been pressing on coarse sandpaper, but

they didn't crack.

I'm still investigating the possibility of relapsing polychondritis in

addition to the DM. I have that ENG next week. I'll keep you all posted.

I am anxious to go back down to see Dr. Franco so I can discuss my options.

Since I had to discontinue the Zithromax, I feel that things are slowly

getting worse. I hope to change that soon.

that's about all for now, take care,

Connie

[Guest guest]

Hi ,

Yes, Cathie is pretty happy with her success. She's a neat lady......and

Canadian, to boot! I hope to see her again someday. Hopefully, there will

be another conference before too long.

Zithromax is better at getting some bugs while the Minocin is better at

getting others. Dr. Brown almost always used the tetracyclines (including

Minocin and doxycycline.) In 'severe or long-standing disease' he used

Clindamycin by IV delivery in addition to the tetracyclines......sort of a

" one-two punch. " Dr. Franco of Riverside, CA started substituting the

Clindamycin with Zithromax in certain patients......which is what he

prescribed for me after I had been on the Minocin for six months. Right off

the bat I noticed that the Zithromax was helping my cough (this is after an

initial Herxheimer reaction--my cough increased for two weeks). I was very

thankful, because around that time I quit taking Advil, Relafen...etc.

because of stomach upset. The NSAID's were at least keeping my cough

somewhat tolerable so I was a little panicked at the thought of my cough

getting out of control again. By the time I had been on the Zithromax (and

Minocin) for a year and a half, my cough was down to maybe once or twice a

day......not 25 times a day. But....in April of this year I called Dr.

Franco and told him that every time I took the Zithromax, which was on

Tuesdays and Saturdays, I would get cramps and diahrrea. This had been

going on for a short while. He told me to quit taking the Zith and increase

the Minocin to six days per week, which I did. Now, since June, I have been

noticing the cough increasing (so has my husband) and my throat, ears, and

larynx have been sore. I think that these symptoms fall into the relapsing

polychondritis catagory more than the DM. So does my local ENT who is very

interested about the whole antibiotic idea. I am also more tired, again.

So......it's time to go see Dr. Franco.....and I'm hopeful that he will know

what to do next.

talk to you later,

hugs, Connie

ps Here is Cathie 's latest posting to Ethel Snooks from Plano,

Texas. She is the " mother " of the rheumatic.org site:

Date: Fri, 15 Sep 2000 22:55:45 -0500

Subject: Update from Cathie

The following message has just been received from Cathie , also

known as The Fairylady. Her story is on our web site. This is one very

happy lady.

Ethel

Please forward this message on to the group.

I'M IN COMPLETE REMISSION - BLOOD WORK IS NORMAL INCLUDING

MYCOPLASMA.

I'M FEELING GREAT PHYSICALLY, EMOTIONALLY AND SPIRITUALLY. NO

LONGER

NEED ANTIBIOTICS. LIFE IS GRAND!

For those of you that don't know me I'm an " oldie " of this group. I was

very seriously ill with Dermatomyositis for several years but after

following the antibiotic protocol, diet, supplements etc. I'm well - I

have my life back. I'm back at school learning to be a holistic

nutritional consultant - I so believe in the power of a good diet. I'm

ballroom dancing 3-4 times a week - you would never know to watch me

dance that I'd ever been sick. I still continue to take very good care

of myself each day. I live a balanced life and feel that I'm the

luckiest person in the world having been given this second chance.

To all you people wondering if this therapy works - believe me IT DOES -

I'M LIVING, BREATHING PROOF. I encourage you to continue - I know it is

the hardest work you'll ever do - but worth it. MY PRAYERS ARE WITH ALL

OF YOU.

Love, THE FAIRYLADY XOXOXXO

[Guest guest]

Hi Everyone,

I got some good news on labs today. My ANA is down and so is my CPK since

starting the prednisone in June. My potassium was a little low and he

thinks that some of the muscle pain and cramping is from that and started me

on micro K so hopefully that will help.

The Singulair is helping with my breathing and I am now on 55mg of

prednisone a day and doing okay so far. I am still having to be very

careful not to do too much and I have had several bad days, but overall I am

doing better. The only problem is that the pain is worse, but the doctor

says he would rather treat the pain than a degenerative disease. So in

other words the pain is better than having the dm in a flare.

I go back to the specialist on the 29th of this month and he will start me

on Arava at that time. I am not sure who got confused, me or him. I could

have sworn he said he as going to give me Avandia, but even if he did say

that, he meant Arava. They do sound similar so who knows what happened. I

was so nervous that day about the visit, it is a wonder I understood

anything he had to say.

My family doctor is talked to the drug rep for Singulair today about the off

label use that I am taking the medication for and they were fascinated.

They invited him to present my case at a symposium. The purpose of this is

to educate other doctors about off label uses of medications and possibly

get them approved for other people to use them this way, but it is also to

get ideas and suggestions about treatment of my case from the other doctors.

He has done this with me several times and actually diagnosed my partial

bowel obstruction related to my food allergies this way. This doctor is

really amazing.

I have some suggestions for those of you with Reynaud's. First, this can be

treated with prescription medication to increase the blood flow to your

hands and feet. Ask your doctors about it. Secondly, there is a product

called Aquaphor that is great for the skin problems you were describing. It

looks like Vaseline, but trust me, it is nothing like it and it has helped

many of my skin problems.

It is funny that you mentioned relapsing polychondritis, because my doctor

said he thought that I might be suffering from that too.

Gentle hugs,

Fern

[Guest guest]

Fern,

Glad you had some good new to share with us. Sorry

you are having pain but it looks like things are

starting to go in the right direction!

Thinking of you,

Cari

--- Starflower wrote:

> Hi Everyone,

>

> I got some good news on labs today. My ANA is down

> and so is my CPK since

> starting the prednisone in June. My potassium was a

> little low and he

> thinks that some of the muscle pain and cramping is

> from that and started me

> on micro K so hopefully that will help.

> The Singulair is helping with my breathing and I am

> now on 55mg of

> prednisone a day and doing okay so far. I am still

> having to be very

> careful not to do too much and I have had several

> bad days, but overall I am

> doing better. The only problem is that the pain is

> worse, but the doctor

> says he would rather treat the pain than a

> degenerative disease. So in

> other words the pain is better than having the dm in

> a flare.

>

> I go back to the specialist on the 29th of this

> month and he will start me

> on Arava at that time. I am not sure who got

> confused, me or him. I could

> have sworn he said he as going to give me Avandia,

> but even if he did say

> that, he meant Arava. They do sound similar so who

> knows what happened. I

> was so nervous that day about the visit, it is a

> wonder I understood

> anything he had to say.

>

> My family doctor is talked to the drug rep for

> Singulair today about the off

> label use that I am taking the medication for and

> they were fascinated.

> They invited him to present my case at a symposium.

> The purpose of this is

> to educate other doctors about off label uses of

> medications and possibly

> get them approved for other people to use them this

> way, but it is also to

> get ideas and suggestions about treatment of my case

> from the other doctors.

> He has done this with me several times and actually

> diagnosed my partial

> bowel obstruction related to my food allergies this

> way. This doctor is

> really amazing.

>

> I have some suggestions for those of you with

> Reynaud's. First, this can be

> treated with prescription medication to increase the

> blood flow to your

> hands and feet. Ask your doctors about it.

> Secondly, there is a product

> called Aquaphor that is great for the skin problems

> you were describing. It

> looks like Vaseline, but trust me, it is nothing

> like it and it has helped

> many of my skin problems.

>

> It is funny that you mentioned relapsing

> polychondritis, because my doctor

> said he thought that I might be suffering from that

> too.

>

> Gentle hugs,

> Fern

>

>

>

__________________________________________________

[Guest guest]

Hi, :

I got many, many e-mails from those buying the book. Some asked why there

were so words not spelled correctly; remember the stories were written as

received from the many gracious people who wanted to share their stories.

The book will probably tell all of us more about effects of Myositis than any

of us ever wanted to know personally.

Have a great weekend,

Jim

<A HREF= " http://www.myositissupportgroup.org/ " >Welcome to the

MyositisSupportGroup Website</A>

[Guest guest]

... in reading your post about the advice your hubby gave you as

you were coming out of the store... drove me nuts. I would like to see

them or anyone else, who doesn't have this disease or another disease

like this, .... to always act and look cheerful. Pain is pain and when

you have it morning, noon and night... I would like to see how they

would handle it. It's hard enough dealing with this every day of the

month without dealing with someone who can not understand what it is

your going through.... Sorry, for my spouting off but I do get tired of

people telling people like myself and others to smile. In my case,

there are days when forming a smile is an act of congress.

I know he meant well but that alone can put you into depression. Ok,

now I'll shut up....

Hugs

Vicki-pm

[Guest guest]

.... You did a wonderful job on the poem... now have a good time at

the Garlic Fest.... sounds like a lot of fun. I do hope your not

catching this cold like Jax, and I had...must be going around.

Gosh, I have to remember to call my doctor tomorrow and find out when

the flu shots will be in. I understand there is a shortage this year.

Have fun.....!!!

Vicki-PM