what do you think?

[Guest guest]

How about forum boards on issues w/lyme: such as family/spousal issues,

dealing/raising children while being ill. The more personal issues. How about a

pen pal section that is sectioned off my states, so if anyone wants to contact

one another.

[ ] What do you think?

Ok,

For many, many, many months I have been working on an idea/website

to help support those associated with lyme disease. I have a

temporary website up, but need some feedback from all of you.

What would you like to see here?

What would you like to see me offer to sell to raise money? I have

over 3000 items to sell to raise money.

What organizations would you like to raise money for?

Please visit eubadukes.com (remember it is still being constructed)

I need feedback please

Thanks for your help,

Darcie in California

I hope you don't see this as a solicitation, I am giving 40% of the

profits to lyme disease research, treatment and to help all in need

in association with this horrible disease. I have lost over 30

years of my life before being diagnosed. I am slowly getting better

at the age of 46. My 14 year old daughter is sick also. She just

stays in bed most days.

I started this website as a way to help others financilly with this

disease. Funds will go to Dr. Burrascano to start, for all the work

he has done for all of us. I am hoping to add some links so you can

choose where you want the funds to go.

Any ideas? I just want to help

[Guest guest]

Darcie~

Just curious, what do you think about selling or advertising for

crafts/artwork/etc. made by those with Lyme and tick-related

diseases? I know that some of the crafts that I made for my mom's

craft show really meant the world to me when I was feeling down and

at the same time kept me busy and my spirits up! Love the website so

far!

Bridget in MN

> For many, many, many months I have been working on an idea/website

> to help support those associated with lyme disease. I have a

> temporary website up, but need some feedback from all of you.

>

> What would you like to see here?

> What would you like to see me offer to sell to raise money? I have

> over 3000 items to sell to raise money.

> What organizations would you like to raise money for?

> Please visit eubadukes.com (remember it is still being constructed)

>

> I need feedback please

> Thanks for your help,

>

> Darcie in California

>

> I hope you don't see this as a solicitation, I am giving 40% of the

> profits to lyme disease research, treatment and to help all in need

> in association with this horrible disease. I have lost over 30

> years of my life before being diagnosed. I am slowly getting

better

> at the age of 46. My 14 year old daughter is sick also. She just

> stays in bed most days.

>

> I started this website as a way to help others financilly with this

> disease. Funds will go to Dr. Burrascano to start, for all the

work

> he has done for all of us. I am hoping to add some links so you

can

> choose where you want the funds to go.

>

> Any ideas? I just want to help

[Guest guest]

Dear Cyntha,

I have gone thru the red tape of setting up a 501c3 non profit corporation

here in PA, contact me and I will see if I can help you out. All I need is

the property and funds to open up the home for people with chronic illnesses

who are not expected to die, just suffer, and provide the help they need

around the home. I also have a newsgroup set up for the project, its been

slow going as my health has not been good. Any one wanting to look at it,

the website is TownsendVillage/ .

Originally PWC was Persons With CFS but has been expanded to include other

chronic illnesses, but not for people who are dying, they have hospice, nor

for those who are elderly, they have nursing homes (aka assisted living)

those of us that have to live with the symptoms indefinitely and unable to

work, have fallen thru the cracks of today's society.

Anyway, I have already set up my 501c3 so may be able to guide you as to

where to start and what needs to be done, it is no small task so it would be

helpful to have some healthy person(s) on the " staff " .

Hugs, Michele

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

> I need to get a 501c or whatever they call it. That way I am covered

> legally and I can get Tax exempt funds.

> Parents of Children With Lyme (POCWL)

> http://pocwl.org

> Cyntha Landon in Lititz, PA

> dclandon@...

>

> > > For many, many, many months I have been working on an idea/website

> > > to help support those associated with lyme disease. I have a

> > > temporary website up, but need some feedback from all of you.

[Guest guest]

Michele, what is this? It sounds like a place where chronically ill

can be protected--is it expensive or is it for people on disability,

etc? This is a great idea as I think one of the fears that lurks in

the back of many chronically ill people's minds is that one day they

might not be able to take care of themselves...not becaues they're

old but because they're sick. Living with this fear is anxiety

producing. I probably live with it subconsciously and push it out of

my mind. I just finished reading a book for example where the woman

had such bad MCS that after a number of years she had to go to a

friend's empty apartment, the only place she could stay was the

bedroom of that apt. Her husband who had tried so hard for so many

years had just had it, they couldn't have any chemicals, any decent

furniture in the house etc. So she left. She got treated with

antifungals by a good doc and eventually after 17 years of illness

got better and better, and rejoined her husband. But had she not had

that friend's apartment to go to during that time, in which she just

mostly rested, where would she have gone? Her husband brought her

food once a week. And what about those who don't have husbands, and

who don't have families to take them in, or can't go to those

families for their own health reasons?

So this is a good idea I think.

[Guest guest]

Actually, the campground site fell through, much too expensive and needed

too much work done. And then I got sicker and we have not done much since.

I hope I don't get in trouble for not filing quarterly employee tax

statements as we do not have any as we don't have a facility going yet. I

wanted one person to come in and cook and clean as needed, letting the

residents do as much or little as they were up to.

As a non-profit, I had hoped to let people pay what they could afford, if

any, and some of the original members of the newsgroup had talked about

doing crafts and selling for money to help out the expenses. The original

dream I had many years ago was a place for the down and out, ready to

" leave " us and or anyone without a support system, family, both of which I

have, a little bit of space to call home where they would all get moral

support, household help, even help to get to the doctor if needed.

Also open to those that need that and have money, money does not make one

happy with this disease if they have no moral support and household help. I

could go on and on, but the realism is that noone has succeeded yet in

opening up a home like this, and several have tried variations, someone in

Texas built a house but was unable to find the chronically ill people to

afford it, a group in Chicago who has had their 501c3 much longer than I

have, have not succeeded yet. Leonard, a psychologist, I think, he is

a member of the newsgroup, as well as his prior assistant, who is now

working along side him, and I know there are others who are trying, maybe

even succeeded.

There is also a lady who runs a 501c3 that helps out on a one time basis,

she has successfully started her venture several years ago, one of her

projects being to get refurbished computers out to chronically ill and

basically homebound people to improve their quality of life. I talk on IRC

a lot of evenings, and we get a lot of people who are so happy to find

others with the same problems, mostly CFS or FM, a lot of them have LD also,

but finding others with like problems can be a change in lifestyle, I know

it was for me, many years ago, as I always worked full time, plus overtime

as an accountant, while going to school full time and having a baby as a

single parent. I was lucky to meet a wonderful man and have a few years

before I left work and the rest is history.

You are all getting me all fired up again about really finding a place and

getting the money or do I find the money and then get the place? I guess

that is the biggest stumbling block, what comes first, the chicken or the

egg?

Hugs, Michele

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

> Michele, what is this? It sounds like a place where chronically ill

> can be protected--is it expensive or is it for people on disability,

> etc?

[Guest guest]

, how/where do you do IRC--is that that instant chat

messenger thing? I'd like to hear more.

I think there must be somebody who would donate land/home--say

someone whose elderly parent(s) died and they have this home/land

that they could sell but don't need the $ and dont' use it and keep

it in the family for hte time being--there must be something like

that. It seems if you got that first, you could worry about the

rest. For instance there is a place I've heard of in Staten Island I

think its called Ganas or something--I'm not sure if its a spiritual

type of group, but what I do recall is everybody contributes a

certain amount of work per week and for that they get room and board

for $400/month total...now of course sick people can't do that kind

of labor, well some could and some couldn't, but this organization is

probably a nonprofit...the point being thats pretty cheap for

NY...for room and board...and part time " work " ...

[Guest guest]

Go to http://www.mirc.com/ and you will have to download software (its free)

to get on IRC, unless you have other software, and then you can go to #cfs

on Undernet. Most people in the US are there about 11pm EST and yes it is a

chat program, you talk to people in real time (well, type messages, not

really talk, hehe).

It would be wonderful to find someone who would donate property, then

getting the money to fix it up would not cost as much as having to buy

property. I will check into that soon, I hope. Anyone who has any other

ideas feel free to email me at mtownsend29@... or better yet. join

the Townsend Village newsgroup and post it there

TownsendVillage/ .

We set it up under that name as it was a small inheritance from my husband's

mother when she died that allowed us to move to PA from FL. Hope to see you

on IRC soon.

Hugs, Michele

[ ] Re: What do you think?

> , how/where do you do IRC--is that that instant chat

> messenger thing? I'd like to hear more.

>

> I think there must be somebody who would donate land/home--say

> someone whose elderly parent(s) died and they have this home/land

> that they could sell but don't need the $ and dont' use it and keep

> it in the family for hte time being--there must be something like

> that. It seems if you got that first, you could worry about the

> rest. For instance there is a place I've heard of in Staten Island I

> think its called Ganas or something--I'm not sure if its a spiritual

> type of group, but what I do recall is everybody contributes a

> certain amount of work per week and for that they get room and board

> for $400/month total...now of course sick people can't do that kind

> of labor, well some could and some couldn't, but this organization is

> probably a nonprofit...the point being thats pretty cheap for

> NY...for room and board...and part time " work " ...

[Guest guest]

I would very much appreciate the help. Right now I am taking a break but I

will let you know when I am ready. I might give you a call in awhile....I

am not walking so good and am very fatigued...I am so sorry it has taken me

so long to get back to you.

Cyntha Landon

Re: [ ] Re: What do you think?

> Dear Cyntha,

> I have gone thru the red tape of setting up a 501c3 non profit corporation

> here in PA, contact me and I will see if I can help you out. All I need

is

> the property and funds to open up the home for people with chronic

illnesses

> who are not expected to die, just suffer, and provide the help they need

> around the home. I also have a newsgroup set up for the project, its been

> slow going as my health has not been good. Any one wanting to look at it,

> the website is TownsendVillage/ .

>

> Originally PWC was Persons With CFS but has been expanded to include other

> chronic illnesses, but not for people who are dying, they have hospice,

nor

> for those who are elderly, they have nursing homes (aka assisted living)

> those of us that have to live with the symptoms indefinitely and unable to

> work, have fallen thru the cracks of today's society.

>

> Anyway, I have already set up my 501c3 so may be able to guide you as to

> where to start and what needs to be done, it is no small task so it would

be

> helpful to have some healthy person(s) on the " staff " .

> Hugs, Michele

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

> > I need to get a 501c or whatever they call it. That way I am covered

> > legally and I can get Tax exempt funds.

> > Parents of Children With Lyme (POCWL)

> > http://pocwl.org

> > Cyntha Landon in Lititz, PA

> > dclandon@...

> >

> > > > For many, many, many months I have been working on an idea/website

> > > > to help support those associated with lyme disease. I have a

> > > > temporary website up, but need some feedback from all of you.

>

>

>

[Guest guest]

> O.k., I'll try and make my story fairly short. I had an auto

> accident last summer and ended up with neck problems. The disk

> between C-6 and 7 is severely herniated. The above two are

> bulging. C-6 itself is not in alignment with the vertebrae above

> and below it (7mm off). The latest MRI shows significant

compression

> of the spinal column. Symptoms: muscle atrophy in the triceps,

> muscle ache in the forarm, numb index finger. Some shoulder

> weakness.

>

> One surgeon I saw back in sept said he could make my MRI look

good,

> but that the nerve damage may be perminant. At that time there

> wasn't that much spinal compression, just bulging into it. He

> didn't insist surgery was necessary, but if he did it, it would be

> fusing 4-5-6-7 on the anterior operation.

>

> Then I did (gentle) Chiro, PT and massage up till December when I

> had a follow up doctor appt and the Dr. noticed my

> shoulder " winging " forward and refered me to an orthopedic surgeon

> who was a spine specialist. Up to that point,I had made some

> progress.

>

> That surgeon had me get another MRI, because the first one was not

> sharp. He also did a flex x-ray of the neck. The X-ray was the

> most shocking thing, because even I can see the C-6 is way out of

> whack. He was very alarmed and did all of the little reflex tests

> and seemed to think one test shows my ankle didn't respond right;

> however I'll be damned, I can walk just fine and I do walk, usualy

> up to 5 miles a day. He wanted to do the same anterior fusion as

> the first surgeon, same number of levels.

>

> Anyway, that surgery was set up and I was going to go through with

> it until he fell and fractured his kneecap.

>

> Sooo, I was referred to another surgeon in the group, saw him and

he

> basicly described the same operation (anterior). But he was an

> orthopedic surgeon and not as qualified as the surgeon he was

> replacing. He had to work along with another neurosurgeon.

>

> Now, I saw that guy (the neurosurgeon) today (supposed to see him

a

> week ago, but the Colorado blizzard snowed him in) and he didn't

> agree with the other three surgeon's assesments. He wanted to go

in

> from the back and didn't think that as many levels would be

> involved. He seemed to think that is was mostly that out of whack

c-

> 6 that was compressing the spine. I think that disk between C-6

and

> C-7 is completely blown out, as the vertebrae are closer together.

>

> I know I will eventually need to get something done and am scared

of

> getting paralyzed by a fall or something. Glad surgery didn't

> happen tomorrow, though, as I am developing a sore throat today.

>

> Sooo, the surgery will have to be done sometime. It's on an auto

> insurance claim, so I could wait a while; hell I've lived with it

> for eight months! What does anyone think of the anterior

procedure

> vs the anterior? I'm going to get a cat scan and then the two

> surgeons will meet on Weds to decide what they want to do. I'll

ask

> a ton of questions of them. This is the fourth surgeon I've

talked

> with!

>

> Sorry, I did say I'd try to keep it brief.

!!! corect the above to read " the posterior procedure vs anterior "

[Guest guest]

> O.k., I'll try and make my story fairly short. I had an auto

> accident last summer and ended up with neck problems. The disk

> between C-6 and 7 is severely herniated. The above two are

> bulging. C-6 itself is not in alignment with the vertebrae above

> and below it (7mm off). The latest MRI shows significant

compression

> of the spinal column. Symptoms: muscle atrophy in the triceps,

> muscle ache in the forarm, numb index finger. Some shoulder

> weakness.

>

> One surgeon I saw back in sept said he could make my MRI look

good,

> but that the nerve damage may be perminant. At that time there

> wasn't that much spinal compression, just bulging into it. He

> didn't insist surgery was necessary, but if he did it, it would be

> fusing 4-5-6-7 on the anterior operation.

>

> Then I did (gentle) Chiro, PT and massage up till December when I

> had a follow up doctor appt and the Dr. noticed my

> shoulder " winging " forward and refered me to an orthopedic surgeon

> who was a spine specialist. Up to that point,I had made some

> progress.

>

> That surgeon had me get another MRI, because the first one was not

> sharp. He also did a flex x-ray of the neck. The X-ray was the

> most shocking thing, because even I can see the C-6 is way out of

> whack. He was very alarmed and did all of the little reflex tests

> and seemed to think one test shows my ankle didn't respond right;

> however I'll be damned, I can walk just fine and I do walk, usualy

> up to 5 miles a day. He wanted to do the same anterior fusion as

> the first surgeon, same number of levels.

>

> Anyway, that surgery was set up and I was going to go through with

> it until he fell and fractured his kneecap.

>

> Sooo, I was referred to another surgeon in the group, saw him and

he

> basicly described the same operation (anterior). But he was an

> orthopedic surgeon and not as qualified as the surgeon he was

> replacing. He had to work along with another neurosurgeon.

>

> Now, I saw that guy (the neurosurgeon) today (supposed to see him

a

> week ago, but the Colorado blizzard snowed him in) and he didn't

> agree with the other three surgeon's assesments. He wanted to go

in

> from the back and didn't think that as many levels would be

> involved. He seemed to think that is was mostly that out of whack

c-

> 6 that was compressing the spine. I think that disk between C-6

and

> C-7 is completely blown out, as the vertebrae are closer together.

>

> I know I will eventually need to get something done and am scared

of

> getting paralyzed by a fall or something. Glad surgery didn't

> happen tomorrow, though, as I am developing a sore throat today.

>

> Sooo, the surgery will have to be done sometime. It's on an auto

> insurance claim, so I could wait a while; hell I've lived with it

> for eight months! What does anyone think of the anterior

procedure

> vs the anterior? I'm going to get a cat scan and then the two

> surgeons will meet on Weds to decide what they want to do. I'll

ask

> a ton of questions of them. This is the fourth surgeon I've

talked

> with!

>

> Sorry, I did say I'd try to keep it brief.

!!! corect the above to read " the posterior procedure vs anterior "

[Guest guest]

,

Thanks for the welcome. I think the surgeons are meeting today to

discuss what sort of operation I should have. I'm in Denver, and

it's a Neurosurgeon and an Orthopedic surgeon who will team up to do

the surgery at Pres St Lukes Hospital here. They have a Spinal

Microsurgery center here. I'm waiting to hear when they think they

can do it and what they will do.

In answer to your questions, my symptoms are mostly left arm pain

and weakness in the shoulder. I'd live with all that stuff, except

like I said in the post, the C-6 is really in an odd position and I

don't want to have an accident and paralyze myself. I take little

for the pain, except tylenol.

I think it comes down to the point where somewhere you have to trust

the surgeons. I know the one guy was considering the anterior

procedure and the other the posterior. Hopefully they will decide

on what's best. A CT was taken yesterday. I know a lady from work

who had a lumbar problem and was using a walker for years and

gobbling pain meds. Now she uses a cane and is looking forward to

going back to work. She got operated on there.

I'd be interested in hearing about your anterior fusion.

Hank

[Guest guest]

,

Thanks for the welcome. I think the surgeons are meeting today to

discuss what sort of operation I should have. I'm in Denver, and

it's a Neurosurgeon and an Orthopedic surgeon who will team up to do

the surgery at Pres St Lukes Hospital here. They have a Spinal

Microsurgery center here. I'm waiting to hear when they think they

can do it and what they will do.

In answer to your questions, my symptoms are mostly left arm pain

and weakness in the shoulder. I'd live with all that stuff, except

like I said in the post, the C-6 is really in an odd position and I

don't want to have an accident and paralyze myself. I take little

for the pain, except tylenol.

I think it comes down to the point where somewhere you have to trust

the surgeons. I know the one guy was considering the anterior

procedure and the other the posterior. Hopefully they will decide

on what's best. A CT was taken yesterday. I know a lady from work

who had a lumbar problem and was using a walker for years and

gobbling pain meds. Now she uses a cane and is looking forward to

going back to work. She got operated on there.

I'd be interested in hearing about your anterior fusion.

Hank

[Guest guest]

Hank -

Sorry I didn't welcome you into the group properly. I

had the same surgery as , but was more fortunate

in my outcome, even though I had spinal fluid leakage during

and got an extra few days in the ICU.

I've got a new problem with my lumbar and would be

interested in knowing about the center that you mention

below. Do they have a website I could visit? I'm wondering

how in the heck you are getting around out there with this

snow I've heard about. Second worst since 1910, says NPR.

If you want any details on my surgery, before, during or after,

I'd be happy to e-mail with you privately, or do it again here.

I've put my story down so many times, I've got to remember

to just put it in a Word file so I can cut and paste.

Again, welcome to our little corner of humor and pain. Sorry

you have to be here, but you're among friends.

Joe ( maxwellj@... )

> I'm in Denver, and

> it's a Neurosurgeon and an Orthopedic surgeon who will team up to do

> the surgery at Pres St Lukes Hospital here. They have a Spinal

> Microsurgery center here. I'm waiting to hear when they think they

> can do it and what they will do.

> I know a lady from work

> who had a lumbar problem and was using a walker for years and

> gobbling pain meds. Now she uses a cane and is looking forward to

> going back to work. She got operated on there.

>

> I'd be interested in hearing about your anterior fusion.

>

> Hank

>

[Guest guest]

Hank -

Sorry I didn't welcome you into the group properly. I

had the same surgery as , but was more fortunate

in my outcome, even though I had spinal fluid leakage during

and got an extra few days in the ICU.

I've got a new problem with my lumbar and would be

interested in knowing about the center that you mention

below. Do they have a website I could visit? I'm wondering

how in the heck you are getting around out there with this

snow I've heard about. Second worst since 1910, says NPR.

If you want any details on my surgery, before, during or after,

I'd be happy to e-mail with you privately, or do it again here.

I've put my story down so many times, I've got to remember

to just put it in a Word file so I can cut and paste.

Again, welcome to our little corner of humor and pain. Sorry

you have to be here, but you're among friends.

Joe ( maxwellj@... )

> I'm in Denver, and

> it's a Neurosurgeon and an Orthopedic surgeon who will team up to do

> the surgery at Pres St Lukes Hospital here. They have a Spinal

> Microsurgery center here. I'm waiting to hear when they think they

> can do it and what they will do.

> I know a lady from work

> who had a lumbar problem and was using a walker for years and

> gobbling pain meds. Now she uses a cane and is looking forward to

> going back to work. She got operated on there.

>

> I'd be interested in hearing about your anterior fusion.

>

> Hank

>

[Guest guest]

Joe,

Thanks for the welcome. I don't think they have the best website,

it doesn't have that much detail. Anyway, it is

http://www.denvermicrospine.com/.

The waiting is the hard part for me. Originally the surgery was

scheduled for March 12th and then bumped up to the 25th and now I'm

waiting to hear.

The only thing that has made this bearable is that there is this

wonderful case manager contracted with the auto insurance who

follows up and helps authorize whatever I need, such as the CAT scan

I had yesterday.

Gee, whiz, I never really had pain in my back or neck till this. I

can really sympathize with anyone here!

Hank

[Guest guest]

Joe,

Thanks for the welcome. I don't think they have the best website,

it doesn't have that much detail. Anyway, it is

http://www.denvermicrospine.com/.

The waiting is the hard part for me. Originally the surgery was

scheduled for March 12th and then bumped up to the 25th and now I'm

waiting to hear.

The only thing that has made this bearable is that there is this

wonderful case manager contracted with the auto insurance who

follows up and helps authorize whatever I need, such as the CAT scan

I had yesterday.

Gee, whiz, I never really had pain in my back or neck till this. I

can really sympathize with anyone here!

Hank

[Guest guest]

Hi Ann,

I loved your piece on trying to hide the scoliosis. That is what I

have spent my life trying to do...trying to walk straighter....wearing

loose clothes etc.

I have to admit it is such a big disappointment for me not being able

to have revision surgery as I was so looking forward to some pain

relief and standing tall.

Oh well..... life goes on.

My son is an art student at The Art Institute of Boston and I am

anxious to show him your piece.

Thanks for sharing your talent.

Ann - NH

PS.... I sent you a private e-mail.....

[Guest guest]

Ann,

I like this piece very much and will be very excited to see where

you go with it. I liked the way you have the spine in a very

geometric form...to me it reminded me that, those that are not cued

into our twisted spines, like looking at this picture might not

even " see " what it is.

Like so many of us feeling that everyone sees all our bumps and

curves...when in fact they probably don't. We spend time worryying

about hiding that which others don't even see (In fact Kathy, I have

looked at that photo of you twice and I never noticed your hip...and

Martha Ann...the only thing I ever saw when we met was your

fantastic personality).

More painting, less work!!

Kidding, I know you have to pay the bills...

Take Care, Cam

[Guest guest]

I think that the desire to hide my back is one reason why I wear my

hair long. The last time I got it cut, I looked in the mirror and

saw way too much of my back.

>

> Hi Ann,

>

> I loved your piece on trying to hide the scoliosis. That is what

I

> have spent my life trying to do...trying to walk

straighter....wearing

> loose clothes etc.

> I have to admit it is such a big disappointment for me not being

able

> to have revision surgery as I was so looking forward to some pain

> relief and standing tall.

> Oh well..... life goes on.

> My son is an art student at The Art Institute of Boston and I am

> anxious to show him your piece.

> Thanks for sharing your talent.

>

> Ann - NH

>

> PS.... I sent you a private e-mail.....

>

[Guest guest]

I loved your piece, and did your other one too. As

the others have said, it is a powerful statement about

the shame. I remember when I was young, my mother

tried desperately to find a way to make my clothes so

they would mask the scoli. She even tried padding the

side that didn't have the hump. (I always laugh when

I think of that and think of the really gruesome joke

about the child with cerebral palsy praying to GOd to

make his one side like the other and his non spastic

side becomes spastic--sorry if I offended anyone, it

is a gruesome joke, but it's like gallows humor) Thank

you for your art expressing so many of our feelings.

Eleln

--- marturtlesong <marturtlesong@...> wrote:

> Hi Ann,

>

> I loved your piece on trying to hide the scoliosis.

> That is what I

> have spent my life trying to do...trying to walk

> straighter....wearing

> loose clothes etc.

> I have to admit it is such a big disappointment for

> me not being able

> to have revision surgery as I was so looking forward

> to some pain

> relief and standing tall.

> Oh well..... life goes on.

> My son is an art student at The Art Institute of

> Boston and I am

> anxious to show him your piece.

> Thanks for sharing your talent.

>

> Ann - NH

>

> PS.... I sent you a private e-mail.....

>

>

>

>

>

__________________________________________________

[Guest guest]

How exciting for me that the piece generated some interesting

discussion.

I do think we notice our own defects much more than others. I am pretty

straight now but I feel I sit so stiffly and stangely and am sure

everyone notices...when I've mentioned the scoliosis or the fusions the

response is usually " I hadn't noticed " . Sometimes I limp a bit and that

people will notice and ask if I have hurt my leg. At this point, it's

really the scars that I have the most trouble with.

Thanks for the feedback. I hope to be doing a lot more painting and

would really like to share with you guys.

Ann

[Guest guest]

Elaine

These symptoms are all related. This disease is one that affects all areas of

the body. Shoulders, ankles, feet, hands even the eyes. I was at home one night

a couple of months ago when I suddenly went blind in one eye.My sight has not

returned and I blame it on the weakening of my auto immune system which is a

causative factor of PA. So be sure to report all these symptoms to both Doctors.

Good Luck

Walt

[Guest guest]

PsA can cause pain almost anywhere there's a joint but I think it's important

that we not blame everything on our disease until we make sure there's not

something else going on, instead or in addition too. You may have hurt your

shoulder without actually realizing it when you fainted; and - having suffered

with problems in both shoulders way before I developed PsA, I've learned that

the shoulder is about the most complicated joint in our bodies because there are

so many different muscles, tendons, etc.connected to it and kind of rib or

postural problem can dramatically affect the shoulder. If it persists, check it

out with an ortho; however, I've also learned that if it's not directly related

to a joint, orthos sometimes cannot diagnose/treat nearly as well as a good

physical therapist.

I tore my rotator cuff and biceps tendons badly in a fall that didn't even shake

me up. No pain - just a tiny bit of stiffness for about 15 minutes when I got

up the next morning. Then about 3 weeks later, I suddenly couldn't lift my

arm. We can hurt ourselves and not realize it until later. .

Joanna Hoelscher

[Guest guest]

Thanks so much for your reply. For the most part I haven't really been

feeling bad. Knowing this puts me in a real funk!

Elaine

[Guest guest]

If I was doing this, I would get as much of the 1mg tablets I could

because you can easily add or cut back with that amount.

Venizia

-- In hypothyroidism , " remedyworks " <remedyworks@...>

wrote:

>

> I think I am going to order Armour on-line and see if Aussie Customs

lets it in.

> I have a naturopath I can work with here to help me regulate it but

I don't know what dosage

> to order. Can I order higher mg and break the pill in half?

> My hair keeps falling out even though the NP is doing everything

possible to support the

> thyroid with supplements.

>

> My labs are:

> S Free T4 14.1

> S Free T3 3.9

> S TSH 2.42

>

> I am going to be doing some international travel the end of June and

don't want to be all

> messed up and fidgety feeling on too much Armour so which mg. bottle

should I start with?

>

> Any suggestions?

> Thanks,

>

>