New to Group

[Guest guest]

You have so much to deal with and are so young .we are all concerned . I

agree wiyjh you . Your eyesight is a number one priority . it must be so scary

for you. . Sometimes I wonder how you deal with it all . Its scary and

unnerving to try to get good health care . You would think that you would be

able

to get some help in filling out those forms . for medicaid . maybe if you call

an organization that helps peolple with problems with their sight . then

you could get some help . You must be eligible for soc . sec . although they

almost aleways turn you down the first time but if you are eligible I am almost

positive you get the money retroactive back to when you first became

disabled . anyway my daughter did . And she received a substantial amount of

money .

However since she is bipolar she did not handle the money properly and it

was gone is 2 weeks but that's another story . hang in there betz . we are al

reading about your plight and are pulling for you . Maybe you should take a

vacation trip to canada and go to er up there . Its free. cathy from ma

[Guest guest]

Sorry I'm so slow getting back. Alkaline diet?

Sounds interesting. I'm curious about the no fruit

juices but eat fruit. Would that be for the pulp or

for the reason that most fruit juices have sugar

added?

For the sunlight...my workplace wellness group has one

of those S.A.D. lamps in our breakroom. Maybe I'll

give that a try rather than the sun tan salon. I do

recall going to a sun tan salon years ago and it felt

great.

Emu oil sounds interesting too. Is it stinky? I

read, in an Edgar Cayce book that peanut oil or olive

oil helps (can't remember which) helps sore joints.

I'll try that first, if no luck.....I'll try the emu

oil.

Thank you!

VJ

________________________________________________________________________________\

____

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[Guest guest]

Hello Betz,

Sorry to hear about your eyes and thank you for your

great sense of humor! Sorry to hear you had to spend

your Thanksgiving in the ER. Morphine? Yuck. I had

that once after surgery and it made me extremely

sick.One does have to find something funny to level

out all the weirdness of this stupid disease!

I find it extremely amazing how much this disease

mimicks others. Like with the Iritis. What I've read

before this can go along with Lupus or MS too. The

Rheumy that I saw basically didn't talk much, just

gave me a pamphlet and told me to find as much info as

I can and read it.

The extreme fatigue is a kick in the pants too.

Lately, I just want to rest and relax. Not the

greatest things to do when Christmas is coming!

The group is great, lots of words of encouragement and

lots of great information.

Thank you for your message.

Take care and my thoughts are with you.

VJ

xo

________________________________________________________________________________\

____

Any questions? Get answers on any topic at www.Answers.. Try it now.

[Guest guest]

Kathy F.: OK, since you would help me out and give me part in the experiment, I

am inclined to think that it is a good cause to experiment for the sake of

Betsy's eyes. But really Kathy F, you do not need to experiment because:

YOu are a saint, an angel

you are already high,

up in heavens, in the skies.

As for me

I am like Betsy,

I have pain in the eyes.

My life took a big turn south the last 6 months and especially the last few

days. I am afraid I will have a P flare because of the stress. However, I am

managing the situation so far, because of the inspiration and the eduacation I

got from you all. Special thanks to Brent for his educational posts and to

Betsy for her inspirational posts, and of course, to the one and only Kathy F.

[Editor's Note: Aw, , you didn't tell me that you were a poet when we met

in Park!. I'm so sorry to hear that things have taken a difficult turn

for you. It is awful when things go wrong at any time, but especially during

this time of the year. I hope you find ways to take care of yourself and find

some happiness among all your problems. I second your comments re Betz and

Brent, Sherry Z, from MA and so many others who provide so much advice,

support and care for all who post here. Kathy F.]

Betsy Jack <itsbetsy@...> wrote:

My good people...when my friends in high school were " experimenting "

and the article of experimentation was passed to me, they said " Don't

give her any....she's weird enough without it " . True story. Wouldn't

that be a kicker if after all of these years of bragging that I was

one of the rare few who never smoked pot I ended up having to take in

in prescription form. lol. -Betz

[Guest guest]

In a message dated 04/12/2006 03:14:36 GMT Standard Time, itsbetsy@...

writes:

I

need to welcome other new folks too but I'm sure I won't ever recover

from this bout of itis (a disease found only where our dear

member lurks....the only symptom is being incrediby behind in

answering posts).

Hey Betz!

I resemble that remark! lol

I'm sorry you are still struggling. I will talk to you in more detail later.

Keep your chin up my friend.

[Guest guest]

Do you really have eye pain? Oh I hope not. And if you do then are you

seeing an opthalmologist for it? Love Betz

[Guest guest]

My dad has glaucoma and smokes pot for it. He's 90. His brother, who was a

couple of years older and died five years ago was actually in the federal

program to receive marijuana grown by the government, but pretty much spurned

that and was getting it from my dad for quality reasons (needed to smoke less,

basically). So I consider my occasional use to be medicinal.

Re: [ ] Re: New to Group

do whatever it takes to save your eyesight. I know that they give

betablockers in a drop form . is that what your on ?cathy from ma

[Editor's Note: , you are so right and kidding aside, your earlier

suggestion re medical marijuana is also worth looking into. Kathy F.]

[Guest guest]

Ok...if they said pot would help my eyes, I'd take it in

pill form but I won't smoke it. I was a dental assistant and I saw what

it did to your teeth (yes...we know who the pot smokers are without

asking) and I also know that it his harmful to your lungs but studies

are not as prevelant as they are for tobacco for obvious reasons. No

smokin for me kiddos. But I'm glad it's helped your Dad...and you. -Betz

[Guest guest]

No smokin for me kiddos. But I'm glad it's helped your Dad...and you. -

Betz

Hi Betz, I understand that it can be baked in brownies and cookies.

Perhaps there is a way for you to find a legal laugh or two.

Brent

>

[Guest guest]

>

> No smokin for me kiddos. But I'm glad it's helped your Dad...and

you. -

> Betz

>

> Hi Betz, I understand that it can be baked in brownies and cookies.

> Perhaps there is a way for you to find a legal laugh or two.

>

> Brent

> >

> Does the pot replace the X-lax or is it in addition to it? -Betz

[Guest guest]

>Does the pot replace the X-lax or is it in addition to it? -Betz

) Good question, Betz. Perhaps someone (here, at the site) with

more experience in special confectionaries can answer your question.

[Guest guest]

Eureka! You found it! These people are wonderful. Full of advice, humor &

support

Dotti

tpiret37 <tpiret@...> wrote:

Hi all,

I am searching for a support group to join over the internet. I

don't get out much with my PA and Spondylitis. I just celebrated my

38th birthday and feel like i'm 138. LOL

Hope all of you are doing ok today.

[Editor's Note: Tpiret, at 138, that makes you one of our older members. Kathy

F.]

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

Need a quick answer? Get one in minutes from people who know. Ask your question

on Answers.

[Guest guest]

Welcome to our group old lady! Is this anything like dog years only

it's PA years? Add one hundred to your natural age? lol. -Love Betz

[Guest guest]

Kathy -

Thanks for your note. I'll be sure to check out past postings. I held

off on serious meds for awhile as well - those side effects sound pretty

scary. I was particularly worried about cancer (since it runs in my

family). But I'm so tired and in so much pain, I decided it was better

to risk it and hope it helps! For me, I'm just thrilled to find others

in the same boat. It helps so much to hear that I'm not the only one

going through this. I realized I should join a group after one of my

recent doctor's appts. I was hurting pretty bad that day. I came into

the doctor's office and the nurse told me I looked good. I said I

wished I felt as good as I looked - and she was so wonderful. She said

that's the problem with PA. On the outside, you look okay - so people

don't realize how badly you're hurting. They act as if everything is

wonderful - and inside you're just ready to collapse from pain and

exhaustion. No one can really relate unless they've experienced it. I

burst into tears at that point! She was so right! So...I'm going to

thank everyone in advance for being there and let you know that if you

need a " group " hug, I'll be first in line to give you one!

Best,

Patty

[Editor's Note: Thanks for the group hug, Patty. I can always use one. I

think most of us know what you mean about people not understanding what we are

going through because they can't see anything wrong with us. I realized a while

ago, though, that most pain, physical and mental, is not visible to others. Who

knows if the receptionist in the rheumatologist's office has an alcoholic

husband who is physically and emotionally abusive? Who knows if the person in

the car in front of me is on his way to his mother's funeral? Who knows if the

guy next to me in church is HIV positive and scared to death of dying? Who

knows if the woman seated next to me in the movie theater recently suffered the

death of a child? Just as I do not understand what it is like to be someone

else because their physical and emotional pain is invisible, I have no right to

EXPECT others to understand why and how I hurt. You are right - that is

precisely why support groups are so very helpful - they are the ONLY people who

CAN truly understand. Kathy F.]

[ ] New to group

Hi! I'm new to the group. I've been suffering from PA since my mid-

twenties -- but didn't have an " official " diagnosis until this past

September. It's a relief to know what the problem is! I started

methotrexate in September, but it didn't do much good. Still in a lot

of pain and so tired! They just started me on Enbrel on Friday. I'm

taking Naproxen, MTX, and Enbrel...with vicodin thrown in when the pain

is too much! I'm just curious how the Enbrel/MTX combo has worked for

those who have tried it? I'm thinking positive.....

Patty

[Editor's Note: Patty, welcome aboard. If you read through our archives,

you will see a lot of information on Enbrel AND MTX used in combination.

I'm one of the people on that particular regime and it has helped me

stabilize somewhat. Unfortunately, I was one of those foolish people who

held off taking " serious medications " for silly reasons (being more

afraid of side effects that I may never get than I was of the absolute

certain wreckage to my body the disease was causing). As as result,

nothing is likely to make me feel great since I've got some permanent

damage, but the Enbrel/MTX combination has helped to keep me mobile and

it has undoubtedly helped slow the progression of the disease. Each

person responds differently - there are some people who feel 100% back

to normal and there are some people who are so allergic that this combo

puts them in the hospital. Listen to your body, but it may take 3-4

months before you'll really know if it is working well for you. Kathy

F.]

[Guest guest]

- welcome to our happy little family! I'm so glad for you that

your hubby is so understanding. Mine is getting better all the time,

thankfully!

Looking forward to getting to know you,

sherry z

>

> I have been dealing with Pa for 3 years.

[Guest guest]

God Bless YOUR husband... Its good you have a partner that helps... Barb does my

shots and stuff and I have trouble walking so she does a lot of the load around

here... I do the indoor stuff like dishes, cooking, laundry, but sometimes STILL

need her to help with some things, I have trouble lifting heavy things for

sure...

Love and Peace

Always,

Shaun & Barb

[Guest guest]

In a message dated 22/01/2007 23:05:49 GMT Standard Time, proche@...

writes:

Hi! I'm new to the group. I've been suffering from PA since my mid-

twenties -- but didn't have an " official " diagnosis until this past

September. It's a relief to know what the problem is!

Hi Patty,

Welcome to the group. I hope the Enbrel/MTX mix works well for you. I am on

it too. Nothing much happened for me on the MTX but when the Enbrel was added I

showed a gradual but definite improvement. Hopefully that will be the case

for you....................................what am I saying, I don't want you to

have a gradual improvement, I want it to work for you as quickly as possible.

Fingers crossed.

Take care,

[Guest guest]

In a message dated 23/01/2007 20:46:48 GMT Standard Time, proche@...

writes:

She said

that's the problem with PA. On the outside, you look okay - so people

don't realize how badly you're hurting. They act as if everything is

wonderful - and inside you're just ready to collapse from pain and

exhaustion. No one can really relate unless they've experienced it

Hi again Patty,

I meant to read the rest of your posts before moving on the next one but I

forgot and sent the last one off.

I know exactly what you mean by your comments above. The thing is to when

people tell me I am looking great I want to tell them that is not the way I feel

but I am then worried that they think I am at it so I usually end up saying

nothing.

You said:

Hope that gives your daughter some hope....

I'm sure it's tough now, but with any luck, it will get better!

Lol It wasn't me who had the 14yr old daughter just diagnosed with PA, it was

Louise. I was just replying to her. It's the same with the follow up post you

sent. I hope Louise is reading all the posts as she will read it anyway. I'm

certain that she would appreciate it Sorry for the confusion. (I do have a

daughter but she is 20 yrs old with no health issues - touch wood)

Actually, reading on, I see you have been talking to Louise too so that's

good. lol

Its great to see you posting so much and trying to help so many people. I

think we will let you stay. lol

Thanks Patty,

[Guest guest]

LOL! Thanks for setting me straight, . I guess I did get a bit

confused! One minute I'm sitting here by myself in pain - and the next

I'm bombarded with dozens of emails with all kinds of great advice!

Sometimes it's hard to keep them all straight. Maybe it's that brain

fog everyone was talking about for awhile. (By the way, I had to read

some of those twice to make sure that wasn't a real symptom!! They had

me going for a few emails. LOL!!!

Best!

Patty

Re: [ ] New to group

In a message dated 23/01/2007 20:46:48 GMT Standard Time,

proche@... <mailto:proche%40fonemine.com>

writes:

She said

that's the problem with PA. On the outside, you look okay - so people

don't realize how badly you're hurting. They act as if everything is

wonderful - and inside you're just ready to collapse from pain and

exhaustion. No one can really relate unless they've experienced it

Hi again Patty,

I meant to read the rest of your posts before moving on the next one but

I

forgot and sent the last one off.

I know exactly what you mean by your comments above. The thing is to

when

people tell me I am looking great I want to tell them that is not the

way I feel

but I am then worried that they think I am at it so I usually end up

saying

nothing.

You said:

Hope that gives your daughter some hope....

I'm sure it's tough now, but with any luck, it will get better!

Lol It wasn't me who had the 14yr old daughter just diagnosed with PA,

it was

Louise. I was just replying to her. It's the same with the follow up

post you

sent. I hope Louise is reading all the posts as she will read it anyway.

I'm

certain that she would appreciate it Sorry for the confusion. (I do have

a

daughter but she is 20 yrs old with no health issues - touch wood)

Actually, reading on, I see you have been talking to Louise too so

that's

good. lol

Its great to see you posting so much and trying to help so many people.

I

think we will let you stay. lol

Thanks Patty,

[Guest guest]

Thanks, ! I hope it works too! No major improvement yet, but

I've only had three shots of the Enbrel. The first two went fine

(although the " pen " sure is painful way to take a dose of it!). I got a

small red rash at the site of the third injection, but it appears to be

going away. I'm hoping that it kicks in shortly!!! :-)

Thanks for the welcome!

Patty

Re: [ ] New to group

In a message dated 22/01/2007 23:05:49 GMT Standard Time,

proche@... <mailto:proche%40fonemine.com>

writes:

Hi! I'm new to the group. I've been suffering from PA since my mid-

twenties -- but didn't have an " official " diagnosis until this past

September. It's a relief to know what the problem is!

Hi Patty,

Welcome to the group. I hope the Enbrel/MTX mix works well for you. I am

on

it too. Nothing much happened for me on the MTX but when the Enbrel was

added I

showed a gradual but definite improvement. Hopefully that will be the

case

for you....................................what am I saying, I don't

want you to

have a gradual improvement, I want it to work for you as quickly as

possible.

Fingers crossed.

Take care,

[Guest guest]

Uhh, Patty,

The brain fog is no joke. It is a REALITY. If you haven't experienced it \

yet, lucky you. I feel one building now, so I am going to get up from the

computer and move around some. I got word my Aunt died over the week

end and maybe it's causing stress after all. She was 93 so she had a long

eventful life. God bless.

Janet in Ca

[Editor's Note: Janet, so sorry to hear about the death of your aunt. The loss

of an elder, even if expected, is still a huge loss. My sympathies to you and

your family. Kathy F.]

-------------- Original message --------------

From: " Roche " <proche@...>

! it's hard to keep them all straight. Maybe it's that brain

> fog everyone was talking about for awhile. (By the way, I had to read

> some of those twice to make sure that wasn't a real symptom!! They had

> me going for a few emails. LOL!!!

>

> Best!

>

> Patty

>

>

[Guest guest]

Janet,

I'm so sorry about your aunt. Please accept my condolences. I didn't

really that symptom existed! Wow! I've been lucky so far.

Thanks for the heads up!

Patty

RE: [ ] New to group

Uhh, Patty,

The brain fog is no joke. It is a REALITY. If you haven't experienced it

\

yet, lucky you. I feel one building now, so I am going to get up from

the

computer and move around some. I got word my Aunt died over the week

end and maybe it's causing stress after all. She was 93 so she had a

long

eventful life. God bless.

Janet in Ca

[Editor's Note: Janet, so sorry to hear about the death of your aunt.

The loss of an elder, even if expected, is still a huge loss. My

sympathies to you and your family. Kathy F.]

[Guest guest]

Janet - my sympathy on your loss. We have almost lost that whole

generation. It's so sad...

best,

sherry z

>

I got word my Aunt died over the week

> end and maybe it's causing stress after all. She was 93 so she had a

long

> eventful life. God bless.

>

> Janet in Ca

>

[Guest guest]

Thanks everyone,

I truly appreciate your thoughts.

Sherry, on my dad's side of the family we also have nearly lost that generation.

My

dad's younger brother is all that's left. That is why we have to plan a trip to

Tulsa

soon, so as not to miss visiting with him and the family. I feel so bad

sometimes about

how the years just pass by while your living your own life and lose touch with

those

you have the most in common with. Thanks again, and God bless,

Janet in Ca

[Editor's Note: 100% of all generations in my family above me are gone so revel

in them while you can. Kathy F.]

-------------- Original message --------------

From: " S. Zorzi " <szorzi_1999@...>

> Janet - my sympathy on your loss. We have almost lost that whole

> generation. It's so sad...

>

> best,

> sherry z

>

>

[Guest guest]

Welcome , Kind been missing here in action been sick, but I am still

STILL catching up on emails lol...

Love and peace always,

Shaun and Barb...