Re: Anyone have deformity?

[Guest guest]

Even though I have only been dx for 4 mths my doctor says there has

already been joint damage. I'm frightened by that. I see all those

darn commericals now for these drugs and my kids see them and ask if my

hands are going to do that. I examine my fingers and knees and toes

and I think I see a difference but maybe it's my mind going crazy on

me. I just turned 37 and I think what life is going to be like with

this for the rest of my life. I know it can be worse but.....

Hang in there

Paris

>

> Just curious, has anyone had problems with deformity while takiing RA

> meds? My big toes are turning, I noticed a couple of weeks ago. I

> just cried and cried, then went to bed. Then people wonder why I'm

> depressed, " duh! " I am scared to death taking these dangerous meds,

> and then it happens anyway. Life's a bitch sometimes, ok most of the

> time. Sorry for venting, Tawny

>

[Guest guest]

Tawny, I am so sorry that this is happening! I wish your doctor could

find a combination of meds that would work to control your RA. You'll

be in my thoughts and prayers.

Sue

On Wednesday, August 27, 2008, at 10:44 PM, tdianaok wrote:

> Just curious, has anyone had problems with deformity while takiing RA

> meds? My big toes are turning, I noticed a couple of weeks ago. I

> just cried and cried, then went to bed. Then people wonder why I'm

> depressed, " duh! " I am scared to death taking these dangerous meds,

> and then it happens anyway. Life's a bitch sometimes, ok most of the

> time. Sorry for venting, Tawny

[Guest guest]

TAWNY DONT FEEL TOO BAD MY TOES R TURNED BUT IT'S O.K. THINGS COULD B WORSE...

MEDS SOMETIMES JUST DON'T WORK, SWEETIE YES IT SUX!!!!!!!!! DON'T WORRY ABOUT

VENTING.GOD BLESS,MELYNDAGAMEZ 8/27/08 10:05P.M.CENTRAL

Re: [ ] Anyone have deformity?

Tawny, I am so sorry that this is happening! I wish your doctor could

find a combination of meds that would work to control your RA. You'll

be in my thoughts and prayers.

Sue

On Wednesday, August 27, 2008, at 10:44  PM, tdianaok wrote:

> Just curious, has anyone had problems with deformity while takiing RA

> meds?  My big toes are turning, I noticed a couple of weeks ago.  I

> just cried and cried, then went to bed.  Then people wonder why I'm

> depressed, " duh! "   I am scared to death taking these dangerous meds,

> and then it happens anyway.  Life's a bitch sometimes, ok most of the

> time.  Sorry for venting, Tawny

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

[Guest guest]

Oh Tawny:

I've never written to you before, so first of all, nice to meet you. Secondly,

I'm sorry you're having such a difficult time. It will get better. {{{Tawny}}}

--

Dodge

From acquaintances we conceal our real selves.

To our friends we reveal our weaknesses.

--Basil Hume

Read my blog at:

http://jumpthis.wordpress.com

---- tdianaok <tdianaok@...> wrote:

=============

Just curious, has anyone had problems with deformity while takiing RA

meds? My big toes are turning, I noticed a couple of weeks ago. I

just cried and cried, then went to bed. Then people wonder why I'm

depressed, " duh! " I am scared to death taking these dangerous meds,

and then it happens anyway. Life's a bitch sometimes, ok most of the

time. Sorry for venting, Tawny

[Guest guest]

Sue,

I might try the IV meds next. I hope to get lucky one day. I'm so

happy Enbrel has worked for you. Thanks for the prayers always, Tawny

[Guest guest]

Melynda,

I shouldn't be whining about my toes, I know. Tawny

[Guest guest]

Hi Paris,

Love your name. It is very scary, and when you know there isn't a lot

you can do. We can just take the meds for the rest of our lives, and

hope for the best. It's extremely depressing, Tawny

[Guest guest]

Dodge,

I have been off the group for quite awhile. Sometimes, between the

pain and depression, I need a time out. It's nice to meet you, Tawny

[Guest guest]

Paris and Tawny,

Paris, I want to say welcome and I hope this group is as good for

you as it is for me.

I totally understand about the joint damage. Sometimes I think that

I am obsessing about my hands. I want to be aware of changes, but

like you I know that it is more fear. I didn't notice any difference

though with my thumbs changing, no extra pain, nothing. Then one day

I looked at them and the joints had turned sideways. I still think

how did that happen and I didn't know? My feet, well they always

have pain, so seeing my toes turn is almost expected.I just know

that when I get to start Enbrel it is going to put and end to this.

If I should be wrong, well, I will keep trying.

I hope everyone has a good peaceful, painfree day.

Shirley

> >

> > Just curious, has anyone had problems with deformity while

takiing RA

> > meds? My big toes are turning, I noticed a couple of weeks

ago. I

> > just cried and cried, then went to bed. Then people wonder why

I'm

> > depressed, " duh! " I am scared to death taking these dangerous

meds,

> > and then it happens anyway. Life's a bitch sometimes, ok most

of the

> > time. Sorry for venting, Tawny

> >

>

[Guest guest]

Hi Tawny..oh yes, I definitely have deformity. I was dx'd back in 1983 when

meds weren't as aggressive as they are now. Back then, they just wanted to

help you with your pain mostly and the old drugs didn't do much for progression.

I was dx'd when I was in my early 30's and am now 59. I have had to have an

op on my right foot...hammertoes and bunionectomy...back in 1999...then in

2006, I had to have a screw removed that poked thru my big toe.... My hands

look

like a witches hands. Really. I get upset when they depict witches as having

straight hair and gnarly hands. I don't have the wart on my nose

though...lol anyway, they are very very ugly..... I am on medicaid for

disability

ssi...and the dr will not operate unless I am in pain 24/7. I scare children

sometimes. I was in the grocery store with david last week and I saw a girl

about

9 or 10...jabbing her two younger friends with her elbow....pointing at

me...and my hands. It's no fun and if kids would ask me, I'd be okay with that

but

they aren't going to because it's rude they were taught. so now they just

point and stare. I have even had one little girl say to her mom...she looks

like

a witch and her dad was so embarrassed. I was picking up some pictures at

their house. I don't look like a witch...I have blonde hair but it's just the

hands and I know that.

I may have to lie one day and tell the dr the pain is sooooo bad just to get

them operated on. but my one hand dr said that the op I would have to have is

not perfected yet. He said he had to go in and reverse some man's that he

did to how it was before the op. I don't know if they're just blowing smoke but

I did read that somewhere online.

Anyway, I try not to let it get to me...but it does tend to ruin my morn or

afternoon. I even tell Dave that I hate to go to any social events with his

club because I'm afraid of having kids across from me and freaking them out.

anyway, that is my lot right now....and what can you do? I just put up with

it and give thanks that even with my hands...and feet....I am still here and

feeling good thanks to the enbrel, arava and prednisone. so what can you do?

I'm pretty well used to it. I can't really turn my wrist or get change very

well....or pick up thing.

But, things can be worse, right? I just hate that it scares the children

cause I love kids.

a

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

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deal here.

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[Guest guest]

Yes, I have deformity and lots of it.

Big deal.

With all the " pains " of this disease

physical and otherwise...it's the

least of my concerns.

I had to start dealing with surgical

scars on hands, wrists and arms at the

age of 19. THAT was depressing.

One big long scar running from the

base of my knuckles to the base of my

wrist....scars on the fingers

elbows, ankle, then other wrist and

fingers....

I look at my hands today as well deserved

and hard fought for badges of courage

and you can see them in my photo album.

But now as I look back, the scars don't bother

me anymore either. I know who I am.

(I'm all THAT AND a bottle of champagne...

I know I'm doing damn well for having RA for 45 years.

You have to keep a sense of humor people

or you won't survive.

Example:

I tell " body art " people that

Tatts are for wooses....

I do scars.

Good Luck,

Shauna

[Guest guest]

Thank you Clora....

I have the big knuckles and some of my fingers are straight and some

crooked...some have the swan dip. Some veer to the right.

That was nice that your grandmother had you to massage her hands. That was

special.

Hugs..a

Ohio

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

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travel deal here.

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[Guest guest]

a and group;

AWe a, I am so sorry you experience such sadness about your

deformaties. My grandma had large golf ball size bumps on her hands.

When I was a little girl I would gently rub them. I ask her if they

hurt. She said no. I felt so sorry for my grandma. I wonder if I will

get them also?

gentle hugs

Clora

[Guest guest]

After 27 years I now have fairly severe deformity in hands especially

and elbows.

I probably did not start to have noticeable deformity until about 10

years ago.

I cry too! It is scary for my children. My daughter is concerned and

also I have a granddaughter. In my family it appears to have skipped

generations so we worry.

Hang in there though and keep up with exercises that will keep your

joints mobile in spite of the deformity. My hands are ugly but at

least I can still use them some.

Suz

In hot humid Arizona!

[Guest guest]

and Group;

No I don't have deformitys yet. I just found out a year ago I have RA.

My grandmother did though.. It seems to have skipped a generation in

my family too. My mom and dad didnt get RA. But my dads mother had it.

And now I have it. I have 7 brothers and 2 sisters and I appear to

be the only one with RA.

Gentle hugs

Clora in hot humid SC lol.

>

> After 27 years I now have fairly severe deformity in hands especially

> and elbows.

> I probably did not start to have noticeable deformity until about 10

> years ago.

> I cry too! It is scary for my children. My daughter is concerned and

> also I have a granddaughter. In my family it appears to have skipped

> generations so we worry.

> Hang in there though and keep up with exercises that will keep your

> joints mobile in spite of the deformity. My hands are ugly but at

> least I can still use them some.

> Suz

> In hot humid Arizona!

>

[Guest guest]

>

> Just curious, has anyone had problems with deformity while takiing RA

> meds? My big toes are turning, I noticed a couple of weeks ago. I

> just cried and cried, then went to bed. Then people wonder why I'm

> depressed, " duh! " I am scared to death taking these dangerous meds,

> and then it happens anyway. Life's a bitch sometimes, ok most of the

> time. Sorry for venting, Tawny

>

Hi Tawny,

You were there for me offering words of support and encouragement when

I first posted and it saddens me to see you in pain both mentally and

physically. Not sure what I can say other than you helped me with your

words.

I'm new to this RA stuff and look to this group for clues as to what I

may expect in my days ahead and have already learned that while I'm

newly diagnosed, the fact that I already have a pretty significant

rheumatoid nodule on the index finger of my right hand, that if I'm not

aggressive in quest for the right treatment I could be face a tough

road ahead hallmarked with painful deformity. I'm hoping that's not the

case.

One thing I have learned over the years is something someone told me

long ago and that is " a pain shared is half the pain and a joy shared

is double the joy. " Don't be sorry for venting. Sharing it here is

one of the best therapies you can find and it doesn't even cost

anything. Hang in there. My prayers are with you.

Bob

[Guest guest]

(((Bob)))

Thanks so much for your kind words. It takes a big person to deal

with this disease, and I will say, I'm not that big,lol Around my

family, I try to hide my feelings, they have no clue how I feel. I do

sometimes put my feelings out there, and it may not be right. I don't

mean to scare anyone, so forgive me of that. You do have to start on

the RA meds-full force, and try to get control of the disease. Just

sometimes, after fighting, dealing with all these different meds, and

your in pain constantly, it gets really hard. Just know I'm here if

you need to chat. Take care of yourself, Tawny

[Guest guest]

Hi Shirley,

It does happen so fast. I have a few more changes, but I will keep

them to myself for now. I hope the Enbrel works for you, and know

more damage. We have to keep trying, bless you Shirley

[Guest guest]

a,

You are so right, with the help of the meds, at least we can get up by

ourselves. People should bring their kids up better, but some people

aren't faced with disease like ours. My children had to learn

early, " my mom is different, " and that is ok.

You just keep your head up, and stay strong. You are such a

inspiration,and thanks for sharing. It is painful to see how your

body has changed, but you are still the same person inside. You take

care of yourself, and know your in my thoughts and prayers, Tawny

[Guest guest]

Thank you Tawny.....I do hold my head up.....there are times when it hurts

and makes me feel sad cause i never want to make the children feel uneasy or

scared. But, it's all good. Life goes on.

Hugs..a

Canton OH

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

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[Guest guest]

Hi Suz...I can relate. My hands didn't start getting ugly and deformed till

about 15-17 yrs after i was dx'd.

I know my mom had rheum arthritis but the only problems she had was finding

good shoes. I don't think her r/a was really bad like mine is...but her

sister, my aunt, has it fullblown like I do. She has suffered with it for so

long.

She's now 86 and has been in a wheelchair for about 10 or 15 yrs. I just

hope my daughter does not come down with it. She's 39 and fine now. also, hope

the grandchildren will get r/a. You feel kind of guilty tho' you know its not

your fault.

Hugs..a

Ohio

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

It's only a deal if it's where you want to go. Find your travel

deal here.

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[Guest guest]

Shauna...I checked out your photos....your hands look like mine. Our badges.

I added some pics to the photo album too (still waiting mod approval). I'll

have to get some pics of my hands on there.

Love your photos! Your daughter is beautiful too!

Hugs..a

Canton OH

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

It's only a deal if it's where you want to go. Find

your travel deal here.

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[Guest guest]

a and Group;

Your welcome a. Yes it was so special to gently rub grandma's

hands. I remember her so fondly. I am so sorry for your

disfigurement. Does it hurt? Thats what concerned me about grandma

if it hurt. I loved her gentle hands. They looked so painful for

her. But she never complained. I was just a kid she may have not

wanted to worry me. When I saw other people like that, I felt for

them. All kids don't think bad about the RA hands. A lot of them

have grandparents with it. Next time a kid looks at it try and think

of that. I am sorry they hurt you a.

My husband broke down at the bank. My daughter had to take me to

the rheumys. I got to get a TB TEST before I can take the humira. My

insurance hasn't approved it yet either. I will take the tb test

tuesday and thursday they will check it. I am still taking plaqunil,

sulfazaline and Lyrcia. Hubby and daughter going to get the van

fixed.

Gentle hugs everyone

Clora

OMG THERE IS 100 MORE POST. I WON'T GET THEM DONE TODAY. I love my

post it's ok lol.

[Guest guest]

Sue,

Thanks, Sweetie. I just know in my mind that it is my miracle.

I hope you are having a decent day.

Shirley

>

> Shirley, I hope that Enbrel works as well for you as it does for me!

> Good luck!

>

> Sue

[Guest guest]

Shirley, I hope that Enbrel works as well for you as it does for me!

Good luck!

Sue

On Thursday, August 28, 2008, at 04:55 AM, nana2livi wrote:

> My feet, well they always

> have pain, so seeing my toes turn is almost expected.I just know

> that when I get to start Enbrel it is going to put and end to this.

> If I should be wrong, well, I will keep trying.