Re: New here - a quick hello

[Guest guest]

In a message dated 5/21/09 3:10:39 PM, jess_stone@... writes:

The thing that shocks me is the mixed reaction you get from people when you tell them you have RA. I've been called a liar, because i'm 'too young',

___________________________

Jess,

You might want to check out the But You Don't Look Sick website for some funny scenarios at

http://butyoudontlooksick.com/sick_humor/

There's also a link to replies you can give to people who say, "but you don't look sick." My favorite response is: "and you don't look stupid." When someone says, "My, my, you're much too young for rheumatoid arthritis," you might want to at least *think* about responding: "And my, my, stupidity is ageless."

Here's the link to responses:

http://www.butyoudontlooksick.com/2006/08/sick_humor_answers_to_but_you.php#more

Clear skies,

BeingIrish

**************Huge savings on HDTVs from Dell.com! (http://pr.atwola.com/promoclk/100126575x1221836042x1201399880/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B215073686%3B37034322%3Bb)

[Guest guest]

Hello Jess and thanks for sharing I was diagnosed when i was a teenager also, I was just seventeen i thought It was a bunion a podiatrist diagnosed me I,m 46 know and you can,t imagine the pain I,m in now and just to get out of bed is a hassle. And when you have no health insurance it makes it worse. Keep the emails coming and take care of yourself.

From: jess_stone@... <jess_stone@...>Subject: New here - a quick helloRheumatoid Arthritis Date: Thursday, May 21, 2009, 10:59 AM

Hi All,I'm Jess and i'm 19. I was diagnosed with RA about two weeks ago and it's already starting to get worse.The thing that shocks me is the mixed reaction you get from people when you tell them you have RA. I've been called a liar, because i'm 'too young', and also told it's not that bad and most people have it.Anyway, moan over.Hello!Jess

[Guest guest]

Hi Jess, Welcome to the group! I'm Steph in VA. I'm 31 and was diagnosed with RA almost 10 years ago when I was 22. My best advice to you is to seek aggressive treatment early. It is really your only chance at remission if you RA is moderate to severe. I have been on Remicade since early 2000 and it has been a lifesaver for me. Besides Remicade, I take methotrexate, folic acid, ibuprofen and flexerill. I have a great job with awesome benefits (I'll take benefits over pay any day) with really understanding coworkers and a great hubby. I am truly blessed. Life with RA is hard and, as you have learned, ignorant people try to make your life harder. When someone tells me I'm too young to have arthritis, I usually smile and say "I know" and walk away. One the fairly rare occasion that I'm in a bad mood and someone says "You don't look sick" I

have remarked back "You don't look stupid either but I guess looks are deceiving." This hasn't happened in years, particularly since I gave my handicapped parking sticker back to the Commonwealth. Take care,Steph in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~From: jess_stone@... <jess_stone@...>Subject: New here - a quick hello Date: Thursday, May 21, 2009, 10:59 AM

I'm Jess and i'm 19. I was diagnosed with RA about two weeks ago and it's already starting to get worse. The thing that shocks me is the mixed reaction you get from people when you tell them you have RA. I've been called a liar, because i'm 'too young', and also told it's not that bad and most people have it. Anyway, moan over.

Hello!

Jess

[Guest guest]

Welcome to the board. There is a link below to a

site with the Spoon Theory that helps to explain to others how a chronic

disease like RA affects us. Perhaps it would be best to say that you have

an autoimmune disease that is attacking your joints, and is usually treated

with chemotherapy drugs. Actually the most common treatment is

Methotrexate and that is used at much higher doses as a chemotherapy drug, so

you are being accurate but perhaps confusing. Of course, saying “arthritis”

is also confusing because people think only of Osteoarthritis that usually

comes with old age. I hope you are seeing a board-certified

rheumatologist because few other doctors are really qualified to either

diagnose or treat RA. If you tell us what treatments you are trying we

might be able to give you some suggestions to talk over with your doctor.

I’m not aware of any doctors on this board but we do have a lot of collective

experience with RA and treatments. God bless.

Spoon Theory – explaining RA to others

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

From:

Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of jess_stone@...

Sent: Thursday, May 21, 2009 7:59 AM

Rheumatoid Arthritis

Subject: New here - a quick hello

Hi All,

I'm Jess and i'm 19. I was diagnosed with RA about two weeks ago and it's

already starting to get worse.

The thing that shocks me is the mixed reaction you get from people when you

tell them you have RA. I've been called a liar, because i'm 'too young', and

also told it's not that bad and most people have it.

Anyway, moan over.

Hello!

Jess

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.339 / Virus Database: 270.12.36/2125 - Release Date: 05/21/09

06:22:00

[Guest guest]

lol you are so right

From: BeingIrish@... <BeingIrish@...>Subject: Re: New here - a quick helloRheumatoid Arthritis Date: Thursday, May 21, 2009, 7:57 PM

In a message dated 5/21/09 3:10:39 PM, jess_stoneymail (DOT) com writes:

The thing that shocks me is the mixed reaction you get from people when you tell them you have RA. I've been called a liar, because i'm 'too young',____________ _________ ______Jess,You might want to check out the But You Don't Look Sick website for some funny scenarios athttp://butyoudontlo oksick.com/ sick_humor/There's also a link to replies you can give to people who say, "but you don't look sick." My favorite response is: "and you don't look stupid." When someone says, "My, my, you're much too young for rheumatoid arthritis," you might want to at least *think* about responding: "And my, my, stupidity is ageless."Here's the link to responses:http://www.butyoudo ntlooksick. com/2006/ 08/sick_humor_ answers_to_ but_you.php# moreClear skies,BeingIrish************ **Huge savings on HDTVs from Dell.com! (http://pr.atwola. com/promoclk/ 100126575x122183 6042x1201399880/ aol?redir= http:%2F% 2Fad.doubleclick .net%2Fclk% 3B215073686% 3B37034322% 3Bb)

[Guest guest]

In a message dated 5/21/09 11:38:34 PM, dbargad@... writes:

Every flare you

experience can potentially cause damage so be sure to get onto a

biologic straight away. If insurance is an issue be sure to log onto

the Remicade or Enbrel/Humira Websites and read about their

compassionate use program so you can get the medication for little or

no cost. It is covered by medicare completely.

_______________________

Not all rheumatologists want patients to start their treatment plan with a biologic, especially when other meds with potentially less toxicity and side-effects will control the symptoms and the progress of the disease, as well or better, in the doctor's opinion. It's imperative that a person discuss this kind of issue with his/her rheumatologist, rather than rely on on-line counsel. We on this forum should not be giving medical advice.

Medicare coverage varies regarding Remicade, Enbrel/Humira. To find out what is and is not covered, a person should talk to hs/her insurance company or HMO. After working and paying into Social Security for more than 20 years, I was accepted for SSDI on the first try in 1995 and have been in an SSDI-approved HMO since then. My plan will pay for some, not all costs of the biologics, should I choose to go on one.

Regards,

BeingIrish

**************Kick start your favorite grad’s career with mobile email for under $50. (http://pr.atwola.com/promoclk/100122638x1221971194x1201441917/aol?redir==http://www.getpeek.com/aol)

[Guest guest]

Dear Jess- I am sorry you have to experience this at such young age.

Still now there are biologics like Remicade that will give you an

almost normal quality of life. Its best to begin a maintenance plan

to manage your RA right away. Remember to try and find a support

group in your area and log into www.arthritisfoundation.org for more

information. Remember too that finding a great Rheumatologist is

absolutely essential. One who is progressive and forward thinking.

Chronic illness can have a mental impact as well as severe fatigue so

rest often, cut yourself loads of slack and remember you are not

alone. Its essential to find out how your disease works and how the

medications that are prescribed work as well. Every flare you

experience can potentially cause damage so be sure to get onto a

biologic straight away. If insurance is an issue be sure to log onto

the Remicade or Enbrel/Humira Websites and read about their

compassionate use program so you can get the medication for little or

no cost. It is covered by medicare completely. People who do not

deal with the challenge of RA are NOT in a position to judge you or

comment. Surround yourself with supportive compassionate

unconditional people and accept nothing less. If you have any

questions, Please email off list to me personally and I will be happy

to answer your questions. Deborah. RA since 1994.

On Thu, May 21, 2009 at 10:59 AM, jess_stone@...

<jess_stone@...> wrote:

>

>

> Hi All,

>

> I'm Jess and i'm 19. I was diagnosed with RA about two weeks ago and it's

> already starting to get worse.

> The thing that shocks me is the mixed reaction you get from people when you

> tell them you have RA. I've been called a liar, because i'm 'too young', and

> also told it's not that bad and most people have it.

>

> Anyway, moan over.

>

> Hello!

>

> Jess

>

>

[Guest guest]

You will have that until you are old. I am 37 and still get that all the time. I have to explain to people that this is an autoimmune disease and it is very common for younger people to have it. I think people hear "Arthritis" and not the Rheumatoid part of it or just dont understand that there are many many different kinds of arthritis. The kind people think of is the osteoarthritis which is the most common. Dont get frustrated, just make a common practice to inform people and explain.

My favorite is when people say "oh I have that to, its in my back or ect.... ect...... and I am like NO I dont think you have RA. I ask them questions about meds and if they see a rheumatologist and it usually ends up being degenerative arthritis that they have.

Harold recommends a web site called www.butyoudontlooksick.com and I absolutly love the spoon theory and I have ordered T-shirts and other things on there, but I do have one complant about the sight. They group all Arthritis together. I really wish they had one that says RA sucks. Not that any kind of arthritis isnt horrible I just think there is a difference.

So sorry you had to end up with this horrible disease. Think positive and with the right treatment you will live a long and "normal" life. I wish you all the luck in the world to find a treatment that is your miracle.

From: jess_stone@... <jess_stone@...>Subject: New here - a quick helloRheumatoid Arthritis Date: Thursday, May 21, 2009, 10:59 AM

Hi All,I'm Jess and i'm 19. I was diagnosed with RA about two weeks ago and it's already starting to get worse.The thing that shocks me is the mixed reaction you get from people when you tell them you have RA. I've been called a liar, because i'm 'too young', and also told it's not that bad and most people have it.Anyway, moan over.Hello!Jess