New to Group

[Guest guest]

Steph,

I'm in Patomac Falls/Sterling. I go to a doctor in the Rheumatology

group at town Hospital (DC). He's FABULOUS, and was even on

the Washingtonian Top 100 Doctors list. I've been to a couple of

not-so-great doctors in the past, so I feel so lucky to have him.

My fear is that he's going to retire in the next few years.

I have been able to work full-time as well, but there are times when

people ask me how I do it. As I said, I quit my job recently to

rest and feel better. I'll go back to work in 2008, but may make a

career change. I need less stress. Thankfully, my husband is very

understanding and supportive. However, I was so thrilled to find

this group though, because as understanding as he is, he doesn't

experience the pain so he can't really relate. Sometimes I worry

that he thinks I'm exaggerating. I try not to complain, and my

doctor has told me that I have a very high threshhold for pain. Not

sure if that's a good thing or not.

Amy

>

> Hi Amy!

> Welcome to the group! Where in VA are you? I live in

Charlottesville, work in Culpeper & my rheumy is in DC. I'm 30 and

have had RA for 8 years now (dx'd when I was 22). I still work full

time thanks to Remicade, Methotrexate, Folic Acid, Flexerill & 1 mg

of Prednisone (soon to be 0). I think the key to my success has been

that I started MTX 2 weeks after I was dx'd (about 2 months after

symptoms 1st started). I started Remicade 5 months after that and

I'm still doing well. If fact I'm home today for my Remicade

treatment. My awesome insurance lets me use home health care.

>

> Take care,

> Steph in VA

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> The 2007 Charlottesville Arthritis Walk was a success!

> We raised just over $30,000 for research & programs for people

with arthritis!

>

> " Never underestimate the power of a small, dedicated group of

people to change the world -- indeed, it's the only thing that ever

has. " (Margaret Mead)

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

Hi Jean! Welcome! I have a handicap hangtag so that I can move it between our

two cars, or if I'm riding with someone else.

Amy

[ ] New to Group

Hi, my name is and I'm relatively new to the group (been lurking

for about a month). I am 57 years old, and was diagnosed about a year

ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

fatigue is my biggest problem (I'm single and work over 40 hours a

week). Here's my question -- have you been able to get a handicapped

plate for your car? The fatigue is overwhelming on some days, yet I

still have to grocery shop. I end up driving around quite a while

until I can get a close parking spot, because after shopping, I can't

face battling winter weather to get to the car.

I've learned a lot already from this group -- for example, I never

knew that the leg cramps I suffer from could be attributable to my RA.

Thanks! Jean

________________________________________________________________________________\

____

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[Guest guest]

Yes, my RA physician signed for handicapped plates for me. I fely very guilty

at first but it has been a blessing. I leave the house more. I was becoming a

shut in. Parking at distances had me exhausted before I started activities.

Now I can expend all my energy in the store or museum and not arrive depleted

of energy.

Afflerbach <jeanaff@...> wrote: Hi, my name is and

I'm relatively new to the group (been lurking

for about a month). I am 57 years old, and was diagnosed about a year

ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

fatigue is my biggest problem (I'm single and work over 40 hours a

week). Here's my question -- have you been able to get a handicapped

plate for your car? The fatigue is overwhelming on some days, yet I

still have to grocery shop. I end up driving around quite a while

until I can get a close parking spot, because after shopping, I can't

face battling winter weather to get to the car.

I've learned a lot already from this group -- for example, I never

knew that the leg cramps I suffer from could be attributable to my RA.

Thanks! Jean

Raniolo

[Guest guest]

Hi I have a handicap tag, my primary signed for it, I do only use it on

bad days but I'm glad I have it. I did feel really funny asking him to sign in

the first place (I'm 51) but I thought, if I have to have this cross, I'm going

to make it as easy on myself as possible.

[ ] New to Group

Hi, my name is and I'm relatively new to the group (been lurking

for about a month). I am 57 years old, and was diagnosed about a year

ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

fatigue is my biggest problem (I'm single and work over 40 hours a

week). Here's my question -- have you been able to get a handicapped

plate for your car? The fatigue is overwhelming on some days, yet I

still have to grocery shop. I end up driving around quite a while

until I can get a close parking spot, because after shopping, I can't

face battling winter weather to get to the car.

I've learned a lot already from this group -- for example, I never

knew that the leg cramps I suffer from could be attributable to my RA.

Thanks! Jean

[Guest guest]

Hi Jean!

I've had one since I was 30 due to my limitations with

Fibromyalgia and now also RA. I don't always have an

easy time finding a spot though and sometimes many

people without a plate or a tag illegally park in one.

Your doctor should be able to fill out a form for you

to take to the Secretary of State. I have a permanent

pass and it was free. One time, it was stolen though

so I had to pay $5 to get a replacement.

--- Afflerbach <jeanaff@...> wrote:

> Hi, my name is and I'm relatively new to the

> group (been lurking

> for about a month). I am 57 years old, and was

> diagnosed about a year

> ago. I take Plaquinil and Celebrex, and symptoms

> are still mild. The

> fatigue is my biggest problem (I'm single and work

> over 40 hours a

> week). Here's my question -- have you been able to

> get a handicapped

> plate for your car? The fatigue is overwhelming on

> some days, yet I

> still have to grocery shop. I end up driving around

> quite a while

> until I can get a close parking spot, because after

> shopping, I can't

> face battling winter weather to get to the car.

>

> I've learned a lot already from this group -- for

> example, I never

> knew that the leg cramps I suffer from could be

> attributable to my RA.

>

> Thanks! Jean

>

>

________________________________________________________________________________\

____

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know-it-all with Mobile. Try it now.

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[Guest guest]

In a message dated 12/10/07 7:28:16 AM, bonlucas@... writes:

> I have had quite a bit of stomach upset from the

> medicines -- heartburn particularly. My rheumie wants me to start taking

> a daily antacid -- like prilosec or zantac or tagament. Have you done

> that?>>>>>

>

I got down to 97 pounds and started taking presciption Pepcid. It helped my

appetite, which I seem to have lost...... I sure miss the joy of eating!

Gentle Hugs,

Pris

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Hi -- nice to meet you. My circumstances are similar -- I am 54,

diagnosed in early fall, and also on plaquenil and celebrex. I also

started antibiotic therapy, taking minocin 3X/week. My symptoms are

pretty well under control at this point -- although some days I am still

uncomfortable. I have had quite a bit of stomach upset from the

medicines -- heartburn particularly. My rheumie wants me to start taking

a daily antacid -- like prilosec or zantac or tagament. Have you done

that?

I am grateful that the disease is being well managed at this point, and

I don't go back to the doc until late January. My husband is a doctor

and he is paying close attention to everything I am doing -- it's nice

having him for an advocate. I am also lucky our children are all grown

(the youngest is 19 and a sophomore in college) so I don't have much

parenting responsibility anymore, but I still work a lot of hours at my

job, too. I do need much more rest than I used to -- I agree with you,

the fatigue is troubling. But my doc says -- hey, this is a systemic

disease, and that is going to part of the package. Cut yourself some

slack and take care.

Bonnie

--- In , " Afflerbach " <jeanaff@...>

wrote:

>

> Hi, my name is and I'm relatively new to the group (been lurking

> for about a month). I am 57 years old, and was diagnosed about a year

> ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

> fatigue is my biggest problem (I'm single and work over 40 hours a

> week). Here's my question -- have you been able to get a handicapped

> plate for your car? The fatigue is overwhelming on some days, yet I

> still have to grocery shop. I end up driving around quite a while

> until I can get a close parking spot, because after shopping, I can't

> face battling winter weather to get to the car.

>

> I've learned a lot already from this group -- for example, I never

> knew that the leg cramps I suffer from could be attributable to my RA.

>

> Thanks! Jean

>

[Guest guest]

I had alot of heartburn and just generally upset stomach when I first went on

R.A. oral meds. I struggled with Celebrex and daily doses of Advil - my rheumy

put me on Nexium (the famous purple pill) daily - made a big difference!!

Lilian

NELLIESTAR@... wrote:

In a message dated 12/10/07 7:28:16 AM, bonlucas@... writes:

> I have had quite a bit of stomach upset from the

> medicines -- heartburn particularly. My rheumie wants me to start taking

> a daily antacid -- like prilosec or zantac or tagament. Have you done

> that?>>>>>

>

I got down to 97 pounds and started taking presciption Pepcid. It helped my

appetite, which I seem to have lost...... I sure miss the joy of eating!

Gentle Hugs,

Pris

**************************************

Check out AOL's list of 2007's hottest

products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

I'm taking 1/2 of a Prilosec OTC each day to combat the effects of Lodine

and other things. I haven't needed anything more except the occasional

Rolaids. It made a big difference for me.

Dennis in eastexas

Re: [ ] Re: New to Group

>I had alot of heartburn and just generally upset stomach when I first went

>on R.A. oral meds. I struggled with Celebrex and daily doses of Advil - my

>rheumy put me on Nexium (the famous purple pill) daily - made a big

>difference!! Lilian

>

> NELLIESTAR@... wrote:

> In a message dated 12/10/07 7:28:16 AM, bonlucas@... writes:

>

>> I have had quite a bit of stomach upset from the

>> medicines -- heartburn particularly. My rheumie wants me to start taking

>> a daily antacid -- like prilosec or zantac or tagament. Have you done

>> that?>>>>>

>>

>

> I got down to 97 pounds and started taking presciption Pepcid. It helped

> my

> appetite, which I seem to have lost...... I sure miss the joy of eating!

> Gentle Hugs,

> Pris

[Guest guest]

I've tried all the antacids you mention, and none worked for me. I

now take Protonix every day, and it's been a life-saver. There's no

generic yet, so my insurance co-pay is high, but it's worth it.

Jean

>

>

> Hi -- nice to meet you. My circumstances are similar -- I am

54,

> diagnosed in early fall, and also on plaquenil and celebrex. I also

> started antibiotic therapy, taking minocin 3X/week. My symptoms are

> pretty well under control at this point -- although some days I am

still

> uncomfortable. I have had quite a bit of stomach upset from the

> medicines -- heartburn particularly. My rheumie wants me to start

taking

> a daily antacid -- like prilosec or zantac or tagament. Have you

done

> that?

>

> I am grateful that the disease is being well managed at this point,

and

> I don't go back to the doc until late January. My husband is a

doctor

> and he is paying close attention to everything I am doing -- it's

nice

> having him for an advocate. I am also lucky our children are all

grown

> (the youngest is 19 and a sophomore in college) so I don't have much

> parenting responsibility anymore, but I still work a lot of hours

at my

> job, too. I do need much more rest than I used to -- I agree with

you,

> the fatigue is troubling. But my doc says -- hey, this is a systemic

> disease, and that is going to part of the package. Cut yourself some

> slack and take care.

>

> Bonnie

>

>

[Guest guest]

Hello Everyone,

I'm Lynn. I was dx with RA about 4 years ago- after seeing a neurologist who

did all kinds of test. Finally had an elevated sed rate on a blood test he did

(after realizing he hadn't done blood work). Back to the rheumatologist and

figured out I had RA, not fibro. Tried Methotrexate, Arava, Plaquenil, Imuran-

itched something terrible. Lost my thick hair, and my scalp became so irritated

and sore (with Imuran) that I couldn't sleep at night. Finally even gently

combing my hair hurt at one point. So I told my doc " I'm not taking this

anymore " . On Enbrel only now, itching not so bad at all considering. Developed

something called Schamberg's purpera (sp?), but at least it's not vasculitis.

I'm not being vain but I sure wish they could come up with more drugs that

don't make your hair fall out and or make you itch like crazy. Of course I had

developed sensitive skin, allergies before finally being dx with RA. Severely

allergic to fragrance- being at work is a nightmare. You never realize how many

everyday products and cosmetics have perfume until the stuff makes you sick! Why

oh why must my co-workers douse themselves in hairspray AND perfume? LOL

As for people not understanding- I totally feel you on that one. Because I

have a sense of humor and upbeat Susie Sunshine personality it's hard for people

to accept that suddenly I'm sick, exhausted out of my mind and have to just

basically take it easy. They just don't get it sometimes. I exercise and keep

going, but there are days when I just have to stay at home so I can take lots of

breaks to relax in my easy chair. But my boss is really understanding of all the

medical appts. I have. So I'm blessed.

Btw, I live in Louisiana. I'm a social worker and author (working on a mystery

now). I'm also single. Dating is tough because I wonder at what point do I tell

a guy that I have a serious illness. Anybody else wrestled with this?

Glad to meet everybody.

Lynn Emery

[Guest guest]

Hi Lynn, nice to " meet " you I had my first RA symptoms when I had just

started dating my husband in my late 20s. I remember calling my Dad in tears

saying that I was seeing the nicest guy and what should I tell him about my

mysterious joint pain. He said I just had to be honest, so I sat my now-husband

down and said the dr didn't know what I had, but I was concerned it was

something that I might have to deal with for a long time. He shrugged and said

oh well. I was very moved b/c at the time my roommate was dressing me, I

couldn't get into the bathtub, it was in my jaws and I was living on mashed

potatoes and pudding, etc. With a ton of NSAIDs, I got my life back and we

forgot about the arthritis until I was diagnosed with RA last year. It sort of

brought back that " uh oh " moment from so long ago, but he's a trouper. He

challenges me to do as much as I can and never treats me like I'm fragile. I

think a good partner will make themselves known

by showing acceptance and support when you share your diagnosis with them.

After all, everyone comes down with something, it's just a matter of what and

when! I hope the Enbrel does a good job for you. It's been an enormous

blessing for me. I could just hug those folks at Amgen/Wyeth. Best, Kate F

[ ] Re: New to Group

Hello Everyone,

I'm Lynn. I was dx with RA about 4 years ago- after seeing a neurologist who did

all kinds of test. Finally had an elevated sed rate on a blood test he did

(after realizing he hadn't done blood work). Back to the rheumatologist and

figured out I had RA, not fibro. Tried Methotrexate, Arava, Plaquenil, Imuran-

itched something terrible. Lost my thick hair, and my scalp became so irritated

and sore (with Imuran) that I couldn't sleep at night. Finally even gently

combing my hair hurt at one point. So I told my doc " I'm not taking this

anymore " . On Enbrel only now, itching not so bad at all considering. Developed

something called Schamberg's purpera (sp?), but at least it's not vasculitis.

I'm not being vain but I sure wish they could come up with more drugs that don't

make your hair fall out and or make you itch like crazy. Of course I had

developed sensitive skin, allergies before finally being dx with RA. Severely

allergic to fragrance- being at work is a nightmare. You never realize how many

everyday products and cosmetics have perfume until the stuff makes you sick! Why

oh why must my co-workers douse themselves in hairspray AND perfume? LOL

As for people not understanding- I totally feel you on that one. Because I have

a sense of humor and upbeat Susie Sunshine personality it's hard for people to

accept that suddenly I'm sick, exhausted out of my mind and have to just

basically take it easy. They just don't get it sometimes. I exercise and keep

going, but there are days when I just have to stay at home so I can take lots of

breaks to relax in my easy chair. But my boss is really understanding of all the

medical appts. I have. So I'm blessed.

Btw, I live in Louisiana. I'm a social worker and author (working on a mystery

now). I'm also single. Dating is tough because I wonder at what point do I tell

a guy that I have a serious illness. Anybody else wrestled with this?

Glad to meet everybody.

Lynn Emery

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Wow, Lynn - the dating would add another difficult dimension. I found

dating at mid life tough enough (my husband died of complications of

diabetes when my kids were 8, 10 & 12) -- I didn't think I would ever

find time to date -- between working full time and doing all the

parenting stuff. But I did, and I remarried -- the RA didn't come until

later. I felt really bad about it because my husband was also widowed,

and his wife died of complications from a rare blood disease (Degos

disease) -- I hated to be another sick wife.

But that's life. And thankfully, I am reasonably well under control

right now ... day by day. I guess I would talk to a date about my

personal health issues when a) something naturally comes up in

conversation or there actually seems to be potential for a real

relationship developing.

Bonnie

>

> Hello Everyone,

>

> I'm Lynn. I was dx with RA about 4 years ago- after seeing a

neurologist who did all kinds of test. Finally had an elevated sed rate

on a blood test he did (after realizing he hadn't done blood work). Back

to the rheumatologist and figured out I had RA, not fibro. Tried

Methotrexate, Arava, Plaquenil, Imuran- itched something terrible. Lost

my thick hair, and my scalp became so irritated and sore (with Imuran)

that I couldn't sleep at night. Finally even gently combing my hair hurt

at one point. So I told my doc " I'm not taking this anymore " . On Enbrel

only now, itching not so bad at all considering. Developed something

called Schamberg's purpera (sp?), but at least it's not vasculitis.

>

> I'm not being vain but I sure wish they could come up with more drugs

that don't make your hair fall out and or make you itch like crazy. Of

course I had developed sensitive skin, allergies before finally being dx

with RA. Severely allergic to fragrance- being at work is a nightmare.

You never realize how many everyday products and cosmetics have perfume

until the stuff makes you sick! Why oh why must my co-workers douse

themselves in hairspray AND perfume? LOL

>

> As for people not understanding- I totally feel you on that one.

Because I have a sense of humor and upbeat Susie Sunshine personality

it's hard for people to accept that suddenly I'm sick, exhausted out of

my mind and have to just basically take it easy. They just don't get it

sometimes. I exercise and keep going, but there are days when I just

have to stay at home so I can take lots of breaks to relax in my easy

chair. But my boss is really understanding of all the medical appts. I

have. So I'm blessed.

>

> Btw, I live in Louisiana. I'm a social worker and author (working on a

mystery now). I'm also single. Dating is tough because I wonder at what

point do I tell a guy that I have a serious illness. Anybody else

wrestled with this?

>

> Glad to meet everybody.

>

>

> Lynn Emery

>

[Guest guest]

I take prescribed Prevacid it seems to work well

--- Afflerbach <jeanaff@...> wrote:

> I've tried all the antacids you mention, and none

> worked for me. I

> now take Protonix every day, and it's been a

> life-saver. There's no

> generic yet, so my insurance co-pay is high, but

> it's worth it.

>

> Jean

>

>

> >

> >

> > Hi -- nice to meet you. My circumstances are

> similar -- I am

> 54,

> > diagnosed in early fall, and also on plaquenil and

> celebrex. I also

> > started antibiotic therapy, taking minocin

> 3X/week. My symptoms are

> > pretty well under control at this point --

> although some days I am

> still

> > uncomfortable. I have had quite a bit of stomach

> upset from the

> > medicines -- heartburn particularly. My rheumie

> wants me to start

> taking

> > a daily antacid -- like prilosec or zantac or

> tagament. Have you

> done

> > that?

> >

> > I am grateful that the disease is being well

> managed at this point,

> and

> > I don't go back to the doc until late January. My

> husband is a

> doctor

> > and he is paying close attention to everything I

> am doing -- it's

> nice

> > having him for an advocate. I am also lucky our

> children are all

> grown

> > (the youngest is 19 and a sophomore in college) so

> I don't have much

> > parenting responsibility anymore, but I still work

> a lot of hours

> at my

> > job, too. I do need much more rest than I used to

> -- I agree with

> you,

> > the fatigue is troubling. But my doc says -- hey,

> this is a systemic

> > disease, and that is going to part of the package.

> Cut yourself some

> > slack and take care.

> >

> > Bonnie

> >

> >

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hi Lynn!!

I'm finding dating an extremely difficult dimension!

I've been sick since the age of 28 and am now 35. Due

to the FMS I never know when I will be able to go out

or have the energy to do so. With the RA on top of

it, I have a hard time focusing on day to day things.

I really miss dating and being active. I got sick

just a year out of college, I had always been really

active. I began modeling professionally at the age of

13 and continued to do so until my late 20's. I

worked for an international company and was able to

travel. Now I seem to be really isolated and have

just a few friends as they haven't been able to adjust

to my illness. I do some freelance writing and am

glad to see an author on this board! what a rewarding

career as a social worker! Welcome to the board I look

forward to being able to talk to you!

--- bonlucas <bonlucas@...> wrote:

>

> Wow, Lynn - the dating would add another difficult

> dimension. I found

> dating at mid life tough enough (my husband died of

> complications of

> diabetes when my kids were 8, 10 & 12) -- I didn't

> think I would ever

> find time to date -- between working full time and

> doing all the

> parenting stuff. But I did, and I remarried -- the

> RA didn't come until

> later. I felt really bad about it because my husband

> was also widowed,

> and his wife died of complications from a rare blood

> disease (Degos

> disease) -- I hated to be another sick wife.

>

> But that's life. And thankfully, I am reasonably

> well under control

> right now ... day by day. I guess I would talk to a

> date about my

> personal health issues when a) something naturally

> comes up in

> conversation or there actually seems to be

> potential for a real

> relationship developing.

>

> Bonnie

>

>

>

> >

> > Hello Everyone,

> >

> > I'm Lynn. I was dx with RA about 4 years ago-

> after seeing a

> neurologist who did all kinds of test. Finally had

> an elevated sed rate

> on a blood test he did (after realizing he hadn't

> done blood work). Back

> to the rheumatologist and figured out I had RA, not

> fibro. Tried

> Methotrexate, Arava, Plaquenil, Imuran- itched

> something terrible. Lost

> my thick hair, and my scalp became so irritated and

> sore (with Imuran)

> that I couldn't sleep at night. Finally even gently

> combing my hair hurt

> at one point. So I told my doc " I'm not taking this

> anymore " . On Enbrel

> only now, itching not so bad at all considering.

> Developed something

> called Schamberg's purpera (sp?), but at least it's

> not vasculitis.

> >

> > I'm not being vain but I sure wish they could come

> up with more drugs

> that don't make your hair fall out and or make you

> itch like crazy. Of

> course I had developed sensitive skin, allergies

> before finally being dx

> with RA. Severely allergic to fragrance- being at

> work is a nightmare.

> You never realize how many everyday products and

> cosmetics have perfume

> until the stuff makes you sick! Why oh why must my

> co-workers douse

> themselves in hairspray AND perfume? LOL

> >

> > As for people not understanding- I totally feel

> you on that one.

> Because I have a sense of humor and upbeat Susie

> Sunshine personality

> it's hard for people to accept that suddenly I'm

> sick, exhausted out of

> my mind and have to just basically take it easy.

> They just don't get it

> sometimes. I exercise and keep going, but there are

> days when I just

> have to stay at home so I can take lots of breaks to

> relax in my easy

> chair. But my boss is really understanding of all

> the medical appts. I

> have. So I'm blessed.

> >

> > Btw, I live in Louisiana. I'm a social worker and

> author (working on a

> mystery now). I'm also single. Dating is tough

> because I wonder at what

> point do I tell a guy that I have a serious illness.

> Anybody else

> wrestled with this?

> >

> > Glad to meet everybody.

> >

> >

> > Lynn Emery

> >

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

I also got a handicap placard and the fatigue was the reason I asked

about it. I actually had to be talked into asking for it - several

friends and my therapist all thought it would help. I'm very glad I

did - it helps in so many ways. For instance, the garage for BART

fills up by 7am - except the handicapped spaces. So I don't have to

leave earlier then I want to get to the train to get to work. And I

don't have to walk as far to my car. I try not to use it if I'm

having a really good day or if I have a light activity day. But if I

know I'm working and doing other errands I know it can help me from

hitting that wall.

My rheumy filled out the forms and wasn't sure they'd give it to me

but they did.

susan

On Dec 9, 2007 10:00 AM, Afflerbach <jeanaff@...> wrote:

>

>

>

>

>

>

> Hi, my name is and I'm relatively new to the group (been lurking

> for about a month). I am 57 years old, and was diagnosed about a year

> ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

> fatigue is my biggest problem (I'm single and work over 40 hours a

> week). Here's my question -- have you been able to get a handicapped

> plate for your car? The fatigue is overwhelming on some days, yet I

> still have to grocery shop. I end up driving around quite a while

> until I can get a close parking spot, because after shopping, I can't

> face battling winter weather to get to the car.

>

> I've learned a lot already from this group -- for example, I never

> knew that the leg cramps I suffer from could be attributable to my RA.

>

> Thanks! Jean

>

>

[Guest guest]

Hi

Welcome to the group. You will find a tremendous amount of information

here and will always be able to ask questions, vent, or share

experiences.Ilive in NJ and have been Diagnosed for about a year. I

have had it for

several years however. I also have Fibro, IC, and a number of other issues.

Look forward to getting to know you.

Heidi M

On 12/12/07, Krauss <sekrauss@...> wrote:

>

> I also got a handicap placard and the fatigue was the reason I asked

> about it. I actually had to be talked into asking for it - several

> friends and my therapist all thought it would help. I'm very glad I

> did - it helps in so many ways. For instance, the garage for BART

> fills up by 7am - except the handicapped spaces. So I don't have to

> leave earlier then I want to get to the train to get to work. And I

> don't have to walk as far to my car. I try not to use it if I'm

> having a really good day or if I have a light activity day. But if I

> know I'm working and doing other errands I know it can help me from

> hitting that wall.

>

> My rheumy filled out the forms and wasn't sure they'd give it to me

> but they did.

>

> susan

>

> On Dec 9, 2007 10:00 AM, Afflerbach

<jeanaff@...<jeanaff%40sbcglobal.net>>

> wrote:

> >

> >

> >

> >

> >

> >

> > Hi, my name is and I'm relatively new to the group (been lurking

> > for about a month). I am 57 years old, and was diagnosed about a year

> > ago. I take Plaquinil and Celebrex, and symptoms are still mild. The

> > fatigue is my biggest problem (I'm single and work over 40 hours a

> > week). Here's my question -- have you been able to get a handicapped

> > plate for your car? The fatigue is overwhelming on some days, yet I

> > still have to grocery shop. I end up driving around quite a while

> > until I can get a close parking spot, because after shopping, I can't

> > face battling winter weather to get to the car.

> >

> > I've learned a lot already from this group -- for example, I never

> > knew that the leg cramps I suffer from could be attributable to my RA.

> >

> > Thanks! Jean

> >

> >

>

>

[Guest guest]

Lynn,

I'm with you! I used to have really thick hair and now, while I still have a

lot of hair, it's become very fine and straight! Not sure which one of the

drugs is doing it, or whether it's a combination of all. The itching has gotten

very bad too - mostly my legs. I have scratched my legs raw, and it doesn't

matter how much lotion or cortisone cream I use, it doesn't get any better.

It's great that you have an understanding boss. That's a big obstacle to

overcome. I was an HR manager for 12-years (quit my job in October to take some

time off), and I can't tell you how many employees I had come to me because

their bosses " got mad " at them for taking time off to go to dr's apts. If they

had a serious illness, I would recommend that they complete paperwork for FMLA.

My boss was always very understanding as well, although I almost always made up

my time.

By the way, I am writing a book as well. Also a mystery. That's one of the

things I promised myself I would complete while on my work break!

Amy

[ ] Re: New to Group

Hello Everyone,

I'm Lynn. I was dx with RA about 4 years ago- after seeing a neurologist who did

all kinds of test. Finally had an elevated sed rate on a blood test he did

(after realizing he hadn't done blood work). Back to the rheumatologist and

figured out I had RA, not fibro. Tried Methotrexate, Arava, Plaquenil, Imuran-

itched something terrible. Lost my thick hair, and my scalp became so irritated

and sore (with Imuran) that I couldn't sleep at night. Finally even gently

combing my hair hurt at one point. So I told my doc " I'm not taking this

anymore " . On Enbrel only now, itching not so bad at all considering. Developed

something called Schamberg's purpera (sp?), but at least it's not vasculitis.

I'm not being vain but I sure wish they could come up with more drugs that don't

make your hair fall out and or make you itch like crazy. Of course I had

developed sensitive skin, allergies before finally being dx with RA. Severely

allergic to fragrance- being at work is a nightmare. You never realize how many

everyday products and cosmetics have perfume until the stuff makes you sick! Why

oh why must my co-workers douse themselves in hairspray AND perfume? LOL

As for people not understanding- I totally feel you on that one. Because I have

a sense of humor and upbeat Susie Sunshine personality it's hard for people to

accept that suddenly I'm sick, exhausted out of my mind and have to just

basically take it easy. They just don't get it sometimes. I exercise and keep

going, but there are days when I just have to stay at home so I can take lots of

breaks to relax in my easy chair. But my boss is really understanding of all the

medical appts. I have. So I'm blessed.

Btw, I live in Louisiana. I'm a social worker and author (working on a mystery

now). I'm also single. Dating is tough because I wonder at what point do I tell

a guy that I have a serious illness. Anybody else wrestled with this?

Glad to meet everybody.

Lynn Emery

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

We use enzymes with every meal and snack. It has worked wonders for my son's

digestive issues. I will let the 'biomed pros' help you with the timing of

supplements.

Janice

[Guest guest]

> I started him on AFP Peptizyde chewables, Im not sure if he should be

> getting this with every meal, or just with meals containing gluten and

> casein?

I gave my son enzymes with every meal and snack.

> Also I just orded trials from Kirkmans lab of TMG with Folonic acid and

> MB12, CLO, SNT Rasberry liquid, CoQ10, Phenol assist... I need some

> advice.. Is this good to start with? When do I introduce each one? and

> how much should he be getting?

Introduce one at a time, and watch for issues.

Give the CoQ10 with fat.

Dana

[Guest guest]

Hi and Welcome

This is a fantastic group of moms and dads and grandmas !!!! So glad you could join us.

hugs

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: mimsnj@...Date: Thu, 20 Dec 2007 06:33:15 +0000Subject: ( ) New to group

Introducing myself. My 16 yo son was recently diagnosed with AS although looking back he could be a poster child for AS from the time he was 2. We've faced difficutlies of finding professionals that actually are experienced dealing with AS and of course, we're fighting with the ins co to cover his needs. Now we're facing adulthood with him and college decisions. Looking forward to learning a lot from all of you. Your chance to win great prizes with TELUS and Windows Live Messenger for Mobile. Click here for more information!

[Guest guest]

Marie,

I had my salines in for a little over a year.... I was so sick and bed ridden from them... You do need a proper removal to regain your health, in my own opinion... If they dump all the toxin in your body, leave capsules and no drains you could risk never regaining your health until you get another surgery...

Our Gretchen and Sandy now all about proper removal... They had to get there's redone for hope of regaining there health...

I am glad you came to this site, it truly saved my life... I to was going to go the cheap route and let the PS remove them since I was so early on having them... Well, scar capsule has already formed so I opted for proper removal and don't regret the decision...

Welcome to Saline Support.

God Bless,

~See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

Hi Marie,

If you're having symptoms, you need to have them removed enbloc.

The capsules absorb toxins from the implants, and your doctor will

poo poo that but I wouldn't take the chance by leaving the capsules

in. We've had people here who have had two surgeries - one to

remove the implants, and then another to remove the capsules later

on because they were still having symptoms.

Sis

--- In , " mariechalk " <mariechalk@...>

wrote:

>

> HI, I HAVE SALINE ABOVE MUSCLE THEY HAVE BEEN IN FOR LITTLE UNDER

A

> YEAR AND HAVE HAD MANY OF THE SAME PROBLEMS..

>

> WILL BE EXPLANTED THIS JAN.. CANT WAIT.... IM WORRIED THOUGH

BECAUSE MY

> PS SAYS I DONT NEED TO HAVE THEM REMOVED BY EN BLOC NOR DO I NEED

> DRAINS.. THE MONEY HAS ALREADY BEEN PAID AND THE DATE HAS ALREADY

BEEN

> SET.... WAS WANDERING IF EN BLOC WAS FOR GALS WHO HAVE HAD THEIRS

IN

> LONGER? HAVE OTHER HEALTH ISSUES GOING ON AND FEEL THAT IF I WAIT

TO

> GET THESE THINGS OUT ILL NEVER GET THEM OUT BECAUSE OF OTHER

ISSUES....

> I FEEL THIS IS MY WINDOW OF OPORTUNITY... I JUST WANT TO BE

HEALTHY

> AGAIN... AND NOT HAVE SO MANY DIZZY SPELLS AND HEADACHES...

>

> ANY ADVICE WOULD BE APPRECIATED...

> MARIE

>

[Guest guest]

Marie,

You need all the scar capsule removed (en bloc or otherwise), and you

should insist on drains. It is your body and you are paying the guy,

why does he think he is the boss. You are the boss. Your body, your money.

Lynda

At 09:41 PM 12/20/2007, you wrote:

>HI, I HAVE SALINE ABOVE MUSCLE THEY HAVE BEEN IN FOR LITTLE UNDER A

>YEAR AND HAVE HAD MANY OF THE SAME PROBLEMS..

>

>WILL BE EXPLANTED THIS JAN.. CANT WAIT.... IM WORRIED THOUGH BECAUSE MY

>PS SAYS I DONT NEED TO HAVE THEM REMOVED BY EN BLOC NOR DO I NEED

>DRAINS.. THE MONEY HAS ALREADY BEEN PAID AND THE DATE HAS ALREADY BEEN

>SET.... WAS WANDERING IF EN BLOC WAS FOR GALS WHO HAVE HAD THEIRS IN

>LONGER? HAVE OTHER HEALTH ISSUES GOING ON AND FEEL THAT IF I WAIT TO

>GET THESE THINGS OUT ILL NEVER GET THEM OUT BECAUSE OF OTHER ISSUES....

>I FEEL THIS IS MY WINDOW OF OPORTUNITY... I JUST WANT TO BE HEALTHY

>AGAIN... AND NOT HAVE SO MANY DIZZY SPELLS AND HEADACHES...

>

>ANY ADVICE WOULD BE APPRECIATED...

>MARIE

>

>

[Guest guest]

Hi Marie,

Welcome to the group! Just as the other ladies have posted, en bloc

is the right way to have them removed. I am 5 weeks post-op from my

removal and I flew to Denver and it the procedure done by Dr. Huang

who is highly recommended by this group. My PS did not want to

remove any scar tissue so I did not have her remove them. If you do

not have the scar tissue removed, you will not get better and will

need a second surgery. Once thier removed you must detox. There are

a few ladies on this forum (myself included)that are recently

explanted and are detoxing right now. Ask as many questions as you

want, we're to help. These are a great group of ladies who can steer

you in the right direction.

Hugs,

Cherie

--- In , " mariechalk " <mariechalk@...>

wrote:

>

> HI, I HAVE SALINE ABOVE MUSCLE THEY HAVE BEEN IN FOR LITTLE UNDER A

> YEAR AND HAVE HAD MANY OF THE SAME PROBLEMS..

>

> WILL BE EXPLANTED THIS JAN.. CANT WAIT.... IM WORRIED THOUGH

BECAUSE MY

> PS SAYS I DONT NEED TO HAVE THEM REMOVED BY EN BLOC NOR DO I NEED

> DRAINS.. THE MONEY HAS ALREADY BEEN PAID AND THE DATE HAS ALREADY

BEEN

> SET.... WAS WANDERING IF EN BLOC WAS FOR GALS WHO HAVE HAD THEIRS

IN

> LONGER? HAVE OTHER HEALTH ISSUES GOING ON AND FEEL THAT IF I WAIT

TO

> GET THESE THINGS OUT ILL NEVER GET THEM OUT BECAUSE OF OTHER

ISSUES....

> I FEEL THIS IS MY WINDOW OF OPORTUNITY... I JUST WANT TO BE HEALTHY

> AGAIN... AND NOT HAVE SO MANY DIZZY SPELLS AND HEADACHES...

>

> ANY ADVICE WOULD BE APPRECIATED...

> MARIE

>