Hello, I'm new

[Guest guest]

>

> Dear Group,

> I'm so excited that I found you today. Kat from the TalkBach

> group suggested this group.

>

> I have been using EFT for several months. I am in New Jersey just

> outside of NYC.

>

> Looking forward to getting to know you.

>

> Warm Regards,

> DK

>

Hi DK,

Welcome to the board! We all look forward to your posts and are happy

to help in any way we can.

-Jef

[Guest guest]

Hi Mildred:

Glad you discovered this Heterochromatica group.

I never heard of two different shades as opposed to two different

colors in one eye. Oh well you learn something new every day, or

you do, if you're lucky.

I have heterochromia iridis too. My right eye is blue/hazel.

I didn't find the term through Google. An opthmologist told me.

My HI is caused by Waardenburg syndrome.Its piebaldism with deafness.

Hope you enjoy it here and one more thing...HAPPY HOLIDAYS!!!

HAPPY HOLIDAYS to everyone here.

Lynda

http://disabilityinfo.ms11.net

>

> This is the first time I have posted on a group so I hope I do

> it right.

> I have heterochromia iridis, although I didn't know the name for it

> until a couple of hours ago when I did a google search. My eyes are

> light brown with almost half of one being very dark brown. I get

> people saying to me all the time " hey, did you know your eyes are

> different? " When people ask me why I usually tell them it's because

> one of my eyes is evil. " really? Which one? " People can be pretty

> stupid.

> I love having different eyes. It's not so noticable on me because they

> are brown. At least I don't think it is but people point it out all

> the time so it must be more obvious than I think.

>

[Guest guest]

Welcome, . We have quite a few members from your continent in

this group. Are you under the care of a rheumatologist? What

medications are you taking?

best regards,

sherry z

>

> Hi

> My name is and I have just stumbled across this group. I am 36

> years old and live in Perth, Western Australia. I have had PA since I

> was about 12 years old and am feeling pretty down at the moment due to

> a particularly bad flare up.

>

> I look forward to chatting to you all and hopefully learning something

> new!

>

>

>

[Guest guest]

Thanks for the welcome Sherry. I have been under the same

rheumatologist for about 12 years now but am contemplating trading him

in on a new model.

I am currently on Salazopyrn, Prexige & Penicillamine. I have tried

methotrexate three times but did not cope well on it. Problems

included shingles, loads of recurring mouth ulcers and the final straw

was when a simple mosquito bite became the size of a dinner plate.

Prexige is great, for day to day pain relief. Does anyone else use it?

I have just started on the penicillamine, so no results yet.

My GP wanted me to try Humira but I have read too many horror stories

and with a family history that includes MS and thyroid cancer, I am

too scared to take that risk.

Question for the methotrexate users... does injecting cut down on some

of the side effects?

[Editor's Note: Yes, in a number of cases, side effects are reduced in

injectable MTX vs. oral MTX. That's certainly been true for me. Based on what

your rheumy has you on, I can certainly understand why you are considering

changing doctors. You are being treated with medications that most rheumies

haven't used in many years. Have you looked into Enbrel? Remicade? Arava? I

can understand why Humira might cause you a bit of pause, however, with proper

and thorough monitoring, those risks are reduced dramatically. Undoubtedly you

have read of some horror stories but there are horror stories about penicillin,

too. MOST people do not experience anything resembling a horror story and,

indeed, many people benefit greatly from these medications. There are even

horror stories about people who are allergic to peanuts, but they are only a

problem for a very small fraction of the population and there is no reason for

most of us to fear them but you could be fearful of a peanut if you focus only

the horror stories. The concern I have for you is that PA is a progressive

disease and you have not taken anything over the last 12 years that helps to

stem the progression - you have only been treating symptoms. The overwhelming

majority of people on these " scary " meds do not experience serious problems and

many people do extremely well on them. There are many horror stories, too,

about the ravages the disease can take if left largely untreated. Tough call,

but I would encourage you to do a lot more research on some of these wonderful

medications that are now available to us. In many cases, your body will quickly

tell you that you should stop a medication and if you do so immediately, there

is no lasting damage. If your bloodwork is monitored frequently, hidden

problems can similarly be identified and your medication changed long before any

permanent damage occurs. All just food for thought. Kathy F.]

[Guest guest]

Hi Kathy,

I take Methotrexate also. I was started out on the pill form, and I didn't

tolerate it well at all. My main problem with it was the naseaus. Oh gosh, I

felt like I had the flu ALL the time!! My doctor then tried me on the

injections, and that helped a lot. I've been on the injectable for about 9

months now, and I still get the naseaus, but not as bad. I also get body aches

the first and second day of my injection, but after that it usually passes, and

I have no further problems until the next Friday when it's time to take it

again. I tried Humira, and oh my, my inflammation levels in my blood just kept

going up, so I was put back on Methotrexate, and it brought them back down. Not

nearly to normal, but much better than it had been.

I hope that helps some.

*soft hugs*

Misty

<myszabi@...> wrote:

Thanks for the welcome Sherry. I have been under the same

rheumatologist for about 12 years now but am contemplating trading him

in on a new model.

I am currently on Salazopyrn, Prexige & Penicillamine. I have tried

methotrexate three times but did not cope well on it. Problems

included shingles, loads of recurring mouth ulcers and the final straw

was when a simple mosquito bite became the size of a dinner plate.

Prexige is great, for day to day pain relief. Does anyone else use it?

I have just started on the penicillamine, so no results yet.

My GP wanted me to try Humira but I have read too many horror stories

and with a family history that includes MS and thyroid cancer, I am

too scared to take that risk.

Question for the methotrexate users... does injecting cut down on some

of the side effects?

[Editor's Note: Yes, in a number of cases, side effects are reduced in

injectable MTX vs. oral MTX. That's certainly been true for me. Based on what

your rheumy has you on, I can certainly understand why you are considering

changing doctors. You are being treated with medications that most rheumies

haven't used in many years. Have you looked into Enbrel? Remicade? Arava? I can

understand why Humira might cause you a bit of pause, however, with proper and

thorough monitoring, those risks are reduced dramatically. Undoubtedly you have

read of some horror stories but there are horror stories about penicillin, too.

MOST people do not experience anything resembling a horror story and, indeed,

many people benefit greatly from these medications. There are even horror

stories about people who are allergic to peanuts, but they are only a problem

for a very small fraction of the population and there is no reason for most of

us to fear them but you could be fearful of a peanut if you

focus only the horror stories. The concern I have for you is that PA is a

progressive disease and you have not taken anything over the last 12 years that

helps to stem the progression - you have only been treating symptoms. The

overwhelming majority of people on these " scary " meds do not experience serious

problems and many people do extremely well on them. There are many horror

stories, too, about the ravages the disease can take if left largely untreated.

Tough call, but I would encourage you to do a lot more research on some of these

wonderful medications that are now available to us. In many cases, your body

will quickly tell you that you should stop a medication and if you do so

immediately, there is no lasting damage. If your bloodwork is monitored

frequently, hidden problems can similarly be identified and your medication

changed long before any permanent damage occurs. All just food for thought.

Kathy F.]

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

Bored stiff? Loosen up...

Download and play hundreds of games for free on Games.

[Guest guest]

Welcome . I'm , 52, and I have chronic pain, peripheral neuropathy, osteopena, fibromyalgia, sjogrens syndrome, rheumatoid arthritis, degenerative disc disease (from top to bottom), hypothyroid, headaches, auditory processing disorder, undiagnosed (so far) breathing problems, sleep apnea, and hypersomnia.......and I've probably left off some!! I don't write often, but it's a great place to get info, everyone on here knows so much, I guess because we're all so sick, and spend a lot of time at the doctor and on the internet researching.I'm sorry you're here, but since you are sick, I'm glad you found us. Take Care, B. in

ILLINOIS Hello, I'm new

Hi, I'm and I live in Hudson, NC with my husban . I look forward to getting to know each and every one of you. Its so hard to tell friends and family how i feel. They give me a pity look or a look like like I'm being lazy almost. They dont understand the pain I go through day in and day out.I was disabled in 1997 with erthema-nodosoma and rheumatoid arthritis. Since then I have been diagnosed with chronic pain, fibromalygia, migraines,neuropathy, Hepatitis C, Cryoglobulinemia,IBS, hyperthyroidism, and paralyzed colon.It would of been easier for me to of said I have a healthy heart, lungs, kidneys, eyeys, and hearing! Everything else internal is going haywire!I hope you have a nice Sunday afternoon. I look forward to talking to ya . Have a nice day!Bek ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick

CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot

of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is

possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

WELCOME TO THE GROUP ;;REBECCA;; IM SURE THAT YOU WILL FIND A LOT OF NEAT FOLKS HERE;WITH A LOT OF INFORMATION;; & GOOD LISTENERS TOO;; TAKE CARE;; ((HUGS)) DORT FROM MICH <missbucky@...> wrote: Hi, I'm and I live in Hudson, NC with my husban . I look forward to getting to know each and every one of you. Its so hard to tell friends and family how i feel. They give me a pity look or a look like like I'm being lazy almost. They dont understand the

pain I go through day in and day out.I was disabled in 1997 with erthema-nodosoma and rheumatoid arthritis. Since then I have been diagnosed with chronic pain, fibromalygia, migraines,neuropathy, Hepatitis C, Cryoglobulinemia,IBS, hyperthyroidism, and paralyzed colon.It would of been easier for me to of said I have a healthy heart, lungs, kidneys, eyeys, and hearing! Everything else internal is going haywire!I hope you have a nice Sunday afternoon. I look forward to talking to ya . Have a nice day!Bek

[Guest guest]

Welcome to the group .

Hugs,

Support your friendly local autistics...........I'm one of them.

Re: Hello, I'm new

WELCOME TO THE GROUP ;;REBECCA;; IM SURE THAT YOU WILL FIND A LOT OF NEAT FOLKS HERE;WITH A LOT OF INFORMATION; ; & GOOD LISTENERS TOO;;

TAKE CARE;;

((HUGS))

DORT FROM MICH <missbuckycharter (DOT) net> wrote:

Hi, I'm and I live in Hudson, NC with my husban . I look forward to getting to know each and every one of you. Its so hard to tell friends and family how i feel. They give me a pity look or a look like like I'm being lazy almost. They dont understand the pain I go through day in and day out.I was disabled in 1997 with erthema-nodosoma and rheumatoid arthritis. Since then I have been diagnosed with chronic pain, fibromalygia, migraines,neuropath y, Hepatitis C, Cryoglobulinemia, IBS, hyperthyroidism, and paralyzed colon.It would of been easier for me to of said I have a healthy heart, lungs, kidneys, eyeys, and hearing! Everything else internal is going haywire!I hope you have a nice Sunday afternoon. I look forward to talking to ya . Have a nice day!Bek

OMG, Sweet deal for users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t

[Guest guest]

WELCOME TO THE GROUP;;REBECCA;; THIS IS A NEAT GROUP;; LOTS OF SPECIAL FOLKS HERE WHERE YOU CAN VENT ;; ETC;; A LOT OF INFO GIVEN ALSO ;;FOR ALL OF OUR AILMENTS; TAKE CARE HEALING ((HUGS)) DORT FROM MICH;;U.S.A. <missbucky@...> wrote: my name is and I live in NC! I look forward to getting to know each of you. I have been battling my diseases sinces 1997 when I was 1st diagnosed with erythma nodosum. Since then my list has grown to rheumatoid arthritis,

chronic pain, fibro myalgia, hep c, migraines, hyperthyroidism, paralyzed colon............its easier to say my eyes, heart, lungs all work well!I hope each of you have a great pain free day!c-ya, Bek

[Guest guest]

Hello There,

My name is and I was just diagnosed with RA. The first thing my physician

told me after she told me I had RA was that it will be " an inconvenience " . But

*nothing* I have read supports her claim. It seems like I will have a life of

crippling and pain. Early death, heart5 and lung problems.

Do any of you who have had RA for a long time lead a normal life? Is there

always pain? Are you helped just with oral meds?

I want to be in the truth about this disease. I would really value any input

from you.

Blessings,

[Guest guest]

Hi ,

I've had RA for 11 years now, I'm currently 54 and at present I just take 2

mtx pills a week. In the beginning I was so bad that I couldn't get off the

sofa without help but once the drug kicked in all was good. I have no

deformity in my hands, thank Goodness as I'm a quilter. If you didn't know

and just met me, you'd never guess I have it.

There will be times where you may have a flare but there are other drugs to

combat that and get you back to your " normal " . Just find a rheumy that you

connect with and hope for the best.

in PA

On Wed, Dec 15, 2010 at 10:35 AM, <wendyjgodfrey@...> wrote:

>

>

> Hello There,

>

> My name is and I was just diagnosed with RA. The first thing my

> physician told me after she told me I had RA was that it will be " an

> inconvenience " . But *nothing* I have read supports her claim. It seems like

> I will have a life of crippling and pain. Early death, heart5 and lung

> problems.

>

> Do any of you who have had RA for a long time lead a normal life? Is there

> always pain? Are you helped just with oral meds?

>

> I want to be in the truth about this disease. I would really value any

> input from you.

>

> Blessings,

>

>

>

>

[Guest guest]

i'm 58 now. my ra started  when i was 32. right after the birth of my second

child

its been tough through the years, gold for 10 years, it put my ra in remission.

then enbrell for anotjher 10 years, i retired from sears,

now on orencia not working to well going on 4 infusion .getting on the right

meds.

makes  the difference.i have good days and bad days.hope this helped

 

ann

From: <wendyjgodfrey@...>

Subject: [ ] Hello, I'm new

Date: Wednesday, December 15, 2010, 10:35 AM

 

Hello There,

My name is and I was just diagnosed with RA. The first thing my physician

told me after she told me I had RA was that it will be " an inconvenience " . But

*nothing* I have read supports her claim. It seems like I will have a life of

crippling and pain. Early death, heart5 and lung problems.

Do any of you who have had RA for a long time lead a normal life? Is there

always pain? Are you helped just with oral meds?

I want to be in the truth about this disease. I would really value any input

from you.

Blessings,

[Guest guest]

,

Do you have a rheumatologist? It's important to see a good one.

It's impossible to predict the disease course in individual cases, but

there are many reasons to be optimistic. Understanding of the disease

has improved, and there are quite a few excellent treatment options

and strategies for RA today.

Much research indicates that early and aggressive treatment with

disease-modifying antirheumatic drugs (DMARDs) - tight control of the

disease - leads to better outcomes.

Not an MD

On Wed, Dec 15, 2010 at 9:35 AM, <wendyjgodfrey@...> wrote:

> Hello There,

>

> My name is and I was just diagnosed with RA. The first thing my

physician told me after she told me I had RA was that it will be " an

inconvenience " . But *nothing* I have read supports her claim. It seems like I

will have a life of crippling and pain. Early death, heart5 and lung problems.

>

> Do any of you who have had RA for a long time lead a normal life? Is there

always pain? Are you helped just with oral meds?

>

> I want to be in the truth about this disease. I would really value any input

from you.

>

> Blessings,

>

>

[Guest guest]

,

I am a 68 year old male. I have been treated for RA for 18 years or so. I have

had it longer than that but was not properly diagnosed until then. Ra does not

automatically mean you will have a life of “crippling and painâ€. I have

been taking MTX and Plaquenil for quite awhile and I lead a pretty normal life.

I have flares as does everyone else. Before I retired as a low voltage

electrician I for sure had good days and bad. Working in construction means you

don’t get paid if you don’t work so I worked through the flares. I actually

missed more work because of asthma attacks. Read everything you can about RA.

Follow in this group as she does a great job of keeping us informed on the

latest news. I don’t know what we would do without her. Years ago you could

always tell when a person had RA because of their deformed hands. You don’t

see that much anymore. Vast improvement in the early and aggressive treatment

as said earlier has been the difference.

Take care and keep asking questions.

Jere

From: <mailto:wendyjgodfrey%40>

Subject: [ ] Hello, I'm new

mailto: %40

Date: Wednesday, December 15, 2010, 10:35 AM

Hello There,

My name is and I was just diagnosed with RA. The first thing my physician

told me after she told me I had RA was that it will be " an inconvenience " . But

*nothing* I have read supports her claim. It seems like I will have a life of

crippling and pain. Early death, heart5 and lung problems.

Do any of you who have had RA for a long time lead a normal life? Is there

always pain? Are you helped just with oral meds?

I want to be in the truth about this disease. I would really value any input

from you.

Blessings,