New here

[Guest guest]

Hi Bonnie:

The skin fungus I had was labeled as " tinea versicolor " by Dr. .

After moving out of the apartment and 30 days on Sporanox, it all totally

cleared up. I am estatic about that. Yes, it was slowly spreading to my legs and

thighs before my diagnosis and treatment. Now it is all gone. I can't believe

how much of a mess I was in that apartment. Now that I am out of there, things

are much better, but my immune system is trashed and I live with the

aftermath each day. He prescribed IVIG therapy for the neuropathy which also

rebuilds

the immune system, but I do not have insurance. Anyway, thanks for taking a

look at the photos. Anything I can do to enlighten others an raise awareness

to this devastasting epidemic of mold exposure, I am happy to do.

Stacey

[Guest guest]

Welcome to this group. Everyone helps each other so much.

Congratulations on your two beautiful children! We have four children (ages

15-21) and I suspect my RA was rearing it's ugly head way back during all of my

pregnancies (and 3 miscarriages and infertility treatments). My doctors always

told me back then I was just tired (tired isn't even the word for it!) because I

was a young mom with 4 children and a home licensed daycare. The pain was

because I was always on the go, lifting babies (twins of my own), etc. I had a

gut feeling there was always more to it but no one ever ran any RA levels on me

or even mentioned it until I insisted on it a few years ago at the urging of a

friend of mine with RA and Lupus. I was actually glad to finally have an

answer.

If you go back in the archives you will find lots of info in the past month or

two for sure about disability and SS. My son is 21, was struck by lightning

when he was 13, and from the ages of 18-20 we battled the SS system. I wish

someone had guided me through it before we got to the point we had to get an

attorney. In our case the attorney did nothing but show up at the hearing and

get a big chunk of money. I did all of the paperwork, legwork, etc. He did

nothing. Your doctor's need to put in writing that you will be unable to do any

substantial work and this is expected to last your lifetime. Also, be sure to

immediately contact your congressman and/or US Senator. They have office

liaisons that help you through this process and having them on your side and

having their inquiry in your SS file gets attention. I have a relative that

works for SS and she told me that. Only I knew all of this after the fact

because I didn't realize that she works in the SS appeals office for the judges

and hadn't talked to her in years. Just ran into her in the office while my son

was talking to the judge. I will help you in any way I can. If you would like

to talk by phone, please e-mail me privately and I will call you when I get a

chance. I now have unlimited long distance on my home phone for $20 a month so

it's nice to be able to freely use that instead of waiting for evenings and

weekends for free cell phone minutes. I haven't applied yet for SS because I'm

afraid that if it took me 2 years to be without an income that we would be in

financial ruins so right now I have family running my business out of kindness

to help and I just more or less supervise.

Becky

natesmom4@...

[ ] new here

I am new here. A friend of mine thought it may help if I found some

support groups to help deal with my RA/Lupus.

I had symptoms of lupus during my three miscarriages, then was

blessed with my son who is three. Six weeks postpartum I started

having joint pain..weakness..and then tested positive for RA.

My disease is going so fast now. In the last year in addition to the

hands, knees, feet, ankles pain and weakness, I developed back pain,

and now horrible neck pain.

I am a Mom of now two, because we adopted a second child..from

Russia. We were in the proceedings to adopt when my disease was

getting worse, but couldn't say no to this beautiful child for my son

to have a sister.

I guess I was hoping to talk with some other Mom's who suffer from

these horrible diseases and how they cope. I only take my pain meds

at night. I am afraid to take them during the day with the children.

I am on Methotrexate, Plaqunil, Bextra, Neurotin, Vicodin (at night I

take), and now a muscle relaxer for the neck pain, which just puts me

to sleep!

I of course can no longer work, and blessed to have a wonderful

husband, and a great sitter to help with the kids. But, the guilt I

feel of not working is horrible. I had a very nice job working for

one of the Big Three prior to my illness.

I am in the process of filing for disability. I have a hearing set

for August. Does anyone know what goes on in the hearing. It took

over a year to get my hearing, and my disease is so much worse now.

Just wondered how it all works?

Also, would love any advice on how to deal with the emotional

pain..when the physical pain started in my neck..it was like oh my

gosh I am really sick..then finding nodules in my hands..and a drug

list that is longer than my grocery list..

Thanks for listening,

[Guest guest]

Welcome to the group . I'm sure you will find plenty of

information, understanding and support from the group here.

I'm sorry you are dealing with RA and Lupus. But very glad you found

some support. Looking forward to seeing you interact with us :-)

Rick

www.whosyomama.com

[ ] new here

I am new here. A friend of mine thought it may help if I found some

support groups to help deal with my RA/Lupus.

I had symptoms of lupus during my three miscarriages, then was

blessed with my son who is three. Six weeks postpartum I started

having joint pain..weakness..and then tested positive for RA.

My disease is going so fast now. In the last year in addition to the

hands, knees, feet, ankles pain and weakness, I developed back pain,

and now horrible neck pain.

I am a Mom of now two, because we adopted a second child..from

Russia. We were in the proceedings to adopt when my disease was

getting worse, but couldn't say no to this beautiful child for my son

to have a sister.

I guess I was hoping to talk with some other Mom's who suffer from

these horrible diseases and how they cope. I only take my pain meds

at night. I am afraid to take them during the day with the children.

I am on Methotrexate, Plaqunil, Bextra, Neurotin, Vicodin (at night I

take), and now a muscle relaxer for the neck pain, which just puts me

to sleep!

I of course can no longer work, and blessed to have a wonderful

husband, and a great sitter to help with the kids. But, the guilt I

feel of not working is horrible. I had a very nice job working for

one of the Big Three prior to my illness.

I am in the process of filing for disability. I have a hearing set

for August. Does anyone know what goes on in the hearing. It took

over a year to get my hearing, and my disease is so much worse now.

Just wondered how it all works?

Also, would love any advice on how to deal with the emotional

pain..when the physical pain started in my neck..it was like oh my

gosh I am really sick..then finding nodules in my hands..and a drug

list that is longer than my grocery list..

Thanks for listening,

[Guest guest]

I haven't any experience with grape seed extract (although I do love red

wine, LOL!), but welcome to the group, Dawn!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] new here

> I was just wondering if anyone has had any relief using grapeseed

> extract.

> Thanks

> Dawn

[Guest guest]

Hi Dawn. I¹ve taken grapeseed but can¹t say I¹ve noticed any improvements.

a

> I was just wondering if anyone has had any relief using grapeseed

> extract.

> Thanks

> Dawn

>

>

>

>

>

[Guest guest]

Hi , Would like to welcome you to the group. I live in

Oklahoma, 41 years old, have 2 daughters 22 and 9 do don't feel bad.

I'm on Humira bi-weekly, and Vicodin for the pain.

It's good to here that the knee replacements went well. So glad that

you have joined us, hugs Tawny

> Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH

and

> 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a

> sense of humor when he puts 9 years between your children!

>

> I was diagnosed with RA 14 years ago and I'm taking Humira,

Celebrex,

> prednisone and Methotrexate. Even typing it out sounds scary. I'm

not

> responding very well to the Humira but the rheumatologist wants to

> give it a few more months.

>

> I had bilateral knee replacements in December and it's the best

thing

> I've ever done. I would not have said that in January, however. It

> takes about 3 months to feel better; or at least that was my

experience.

>

> Oh well, I've talked long enough. Just wanted to say Hey!

>

> God Bless!

>

[Guest guest]

Welcome to the group. How long have you been taking Humira? I

started in January and I felt better right away, but now that it's

been more than 5 months I think it's working even better than it did

intially. I am also on methotrexate and prednisone, and folic acid

and calcuim supplements (due to my increased risk for osteoporosis -

bone loss from the prednisone). I am weaning off prednisone and

only on 2-3 mgs alternating doses daily. I'm 33 and was diagnosed

about a year ago, one daughter who is turning 4 in a few hours.

I am curious what medications you were on when you had your daughter

since it was after your diagnosis, and what happened after she was

born with the RA. I'm hoping I can have one more child someday.

Welcome again.

Jennie

> Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH

and

> 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a

> sense of humor when he puts 9 years between your children!

>

> I was diagnosed with RA 14 years ago and I'm taking Humira,

Celebrex,

> prednisone and Methotrexate. Even typing it out sounds scary. I'm

not

> responding very well to the Humira but the rheumatologist wants to

> give it a few more months.

>

> I had bilateral knee replacements in December and it's the best

thing

> I've ever done. I would not have said that in January, however. It

> takes about 3 months to feel better; or at least that was my

experience.

>

> Oh well, I've talked long enough. Just wanted to say Hey!

>

> God Bless!

>

[Guest guest]

Welcome to the group, !

How long have you been on the Humira?

Glad to hear that your knee replacements were so successful.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New Here

> Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and

> 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a

> sense of humor when he puts 9 years between your children!

>

> I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex,

> prednisone and Methotrexate. Even typing it out sounds scary. I'm not

> responding very well to the Humira but the rheumatologist wants to

> give it a few more months.

>

> I had bilateral knee replacements in December and it's the best thing

> I've ever done. I would not have said that in January, however. It

> takes about 3 months to feel better; or at least that was my

experience.

>

> Oh well, I've talked long enough. Just wanted to say Hey!

>

> God Bless!

>

[Guest guest]

Hi, Tawny

Dana here. I just saw your post here, and my aunt who has re says that Humira

has dreadful sides. I am curious about your experience with this. She told me

that if I have to work, I will not be able to tolerate it. She has tried every

RA med, is 67 years old, has had both knees, shoulders and hips replaced.

Thanks!

[ ] Re: New Here

Hi , Would like to welcome you to the group. I live in

Oklahoma, 41 years old, have 2 daughters 22 and 9 do don't feel bad.

I'm on Humira bi-weekly, and Vicodin for the pain.

It's good to here that the knee replacements went well. So glad that

you have joined us, hugs Tawny

> Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH

and

> 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a

> sense of humor when he puts 9 years between your children!

>

> I was diagnosed with RA 14 years ago and I'm taking Humira,

Celebrex,

> prednisone and Methotrexate. Even typing it out sounds scary. I'm

not

> responding very well to the Humira but the rheumatologist wants to

> give it a few more months.

>

> I had bilateral knee replacements in December and it's the best

thing

> I've ever done. I would not have said that in January, however. It

> takes about 3 months to feel better; or at least that was my

experience.

>

> Oh well, I've talked long enough. Just wanted to say Hey!

>

> God Bless!

>

[Guest guest]

Hi. I know you weren't asking me, but I've been on Humira since

January and the worst side effect I have is some redness at the

injection site (biweekly injections). It's really helped my RA

pain/swelling, although not much on the fatigue side. I'm also on 2-

3 mgs of predinsone daily (weaning down from 7 when I started

Humira) and 17.5 mgs of methotrexate weekly. I'm 33 and I've been

diagnosed for a year. I work full time and have a daughter who just

turned 4 (yesterday). Working has been much easier since starting

Humira.

Jennie

> > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with

my DH

> and

> > 2 kids; Ricky is almost 18 and is almost 9. Yes, God

has a

> > sense of humor when he puts 9 years between your children!

> >

> > I was diagnosed with RA 14 years ago and I'm taking Humira,

> Celebrex,

> > prednisone and Methotrexate. Even typing it out sounds scary.

I'm

> not

> > responding very well to the Humira but the rheumatologist

wants to

> > give it a few more months.

> >

> > I had bilateral knee replacements in December and it's the

best

> thing

> > I've ever done. I would not have said that in January,

however. It

> > takes about 3 months to feel better; or at least that was my

> experience.

> >

> > Oh well, I've talked long enough. Just wanted to say Hey!

> >

> > God Bless!

> >

>

>

>

>

[Guest guest]

Dana, Everyone experiences different side effects with meds. I have

not had any side effects really from the Humira. I did experience

pain a few days after the injection, but that is very rare now also.

I feel the Humira would work better for me, if I could take a combo

with it, such as Methotrexate. But I'm not able to take that drug,

because it raises my liver enzymes. I am glad to be able to take the

Humira, because it helps slow down the disease. Hope this helps, T

> > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my

DH

> and

> > 2 kids; Ricky is almost 18 and is almost 9. Yes, God

has a

> > sense of humor when he puts 9 years between your children!

> >

> > I was diagnosed with RA 14 years ago and I'm taking Humira,

> Celebrex,

> > prednisone and Methotrexate. Even typing it out sounds scary.

I'm

> not

> > responding very well to the Humira but the rheumatologist wants

to

> > give it a few more months.

> >

> > I had bilateral knee replacements in December and it's the best

> thing

> > I've ever done. I would not have said that in January, however.

It

> > takes about 3 months to feel better; or at least that was my

> experience.

> >

> > Oh well, I've talked long enough. Just wanted to say Hey!

> >

> > God Bless!

> >

>

>

>

>

[Guest guest]

I've had few side effects from the Humira except dreadful pain when I inject it;

it feels like a hornet's sting. I actually dread giving myself the medicine but

I am willing to deal with it if it can possibly help. Hopefully this is one

problem that will go away over time.

God bless,

xponder70 <xponder70@...> wrote:

Hi. I know you weren't asking me, but I've been on Humira since

January and the worst side effect I have is some redness at the

injection site (biweekly injections). It's really helped my RA

pain/swelling, although not much on the fatigue side. I'm also on 2-

3 mgs of predinsone daily (weaning down from 7 when I started

Humira) and 17.5 mgs of methotrexate weekly. I'm 33 and I've been

diagnosed for a year. I work full time and have a daughter who just

turned 4 (yesterday). Working has been much easier since starting

Humira.

Jennie

> > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with

my DH

> and

> > 2 kids; Ricky is almost 18 and is almost 9. Yes, God

has a

> > sense of humor when he puts 9 years between your children!

> >

> > I was diagnosed with RA 14 years ago and I'm taking Humira,

> Celebrex,

> > prednisone and Methotrexate. Even typing it out sounds scary.

I'm

> not

> > responding very well to the Humira but the rheumatologist

wants to

> > give it a few more months.

> >

> > I had bilateral knee replacements in December and it's the

best

> thing

> > I've ever done. I would not have said that in January,

however. It

> > takes about 3 months to feel better; or at least that was my

> experience.

> >

> > Oh well, I've talked long enough. Just wanted to say Hey!

> >

> > God Bless!

> >

>

>

>

>

[Guest guest]

, I've been taking Humira for more than a year; Enbrel before that. Enbrel

didn't work at all so I'm hoping Humira will kick in soon - hasn't helped that

much to this point.

<Matsumura_Clan@...> wrote:

Welcome to the group, !

How long have you been on the Humira?

Glad to hear that your knee replacements were so successful.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New Here

> Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and

> 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a

> sense of humor when he puts 9 years between your children!

>

> I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex,

> prednisone and Methotrexate. Even typing it out sounds scary. I'm not

> responding very well to the Humira but the rheumatologist wants to

> give it a few more months.

>

> I had bilateral knee replacements in December and it's the best thing

> I've ever done. I would not have said that in January, however. It

> takes about 3 months to feel better; or at least that was my

experience.

>

> Oh well, I've talked long enough. Just wanted to say Hey!

>

> God Bless!

>

[Guest guest]

, It helps so much to inject the Humira very slow, less burn.

I'm gettin' to be a old pro!

> > > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with

> my DH

> > and

> > > 2 kids; Ricky is almost 18 and is almost 9. Yes, God

> has a

> > > sense of humor when he puts 9 years between your children!

> > >

> > > I was diagnosed with RA 14 years ago and I'm taking Humira,

> > Celebrex,

> > > prednisone and Methotrexate. Even typing it out sounds scary.

> I'm

> > not

> > > responding very well to the Humira but the rheumatologist

> wants to

> > > give it a few more months.

> > >

> > > I had bilateral knee replacements in December and it's the

> best

> > thing

> > > I've ever done. I would not have said that in January,

> however. It

> > > takes about 3 months to feel better; or at least that was my

> > experience.

> > >

> > > Oh well, I've talked long enough. Just wanted to say Hey!

> > >

> > > God Bless!

> > >

> >

> >

> >

> >

[Guest guest]

Welcome to the group, Cheryle! Sorry that you are having trouble with

your health.

Is your physician (I'm assuming a rheumatologist) doing anything to

treat your pain? Has he given you a diagnosis?

The blisters could be any of several things. It would be a good idea to

go in and have your rheumatologist or a dermatologist have a look at

them.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New here

> Hello,

> I am new here, My Name is Cheryle

>

> I am 32 and have 3 kiddos ages 8.5, 6 and 2.5

> I will be married 12 years a week from today.

>

> I have been in pain since my last baby was born, We moved from calif

> to oregon because of the docs where we were from were not very good.

> I see a great specialist now and love him. He at first thought I had

> fibro but my sedrate level kept going up so he tried me on the

> prednisone and it worked so he put me on plaquinel, Now My question

> is. In the last month I have found a few blisters on my face, mainly

> in my chin area, They are in a clust of like 3-4 and red and have

> clear liquid in them, they are the size of a small pea. the cluster.

> I was wondering if this is the starting signs of lupus. I have a

> great family history of it and have 14 different autoammune dies. in

> my family.

>

> any help would be greatly accepted!

> thanks tons

> Cheryle

[Guest guest]

Hello,

Yes He is giving me plaquinel and My general doc is giving me t3 for the pain

and I also take zanaflex at night for sleep. I have been pretty tired alot so

he also said he would give me something for that. he told me if my gdoc doesnt

give me anymore t3s he will start me on them.

I will be telling him about it. what else could they be from??

<Matsumura_Clan@...> wrote:

Welcome to the group, Cheryle! Sorry that you are having trouble with

your health.

Is your physician (I'm assuming a rheumatologist) doing anything to

treat your pain? Has he given you a diagnosis?

The blisters could be any of several things. It would be a good idea to

go in and have your rheumatologist or a dermatologist have a look at

them.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New here

> Hello,

> I am new here, My Name is Cheryle

>

> I am 32 and have 3 kiddos ages 8.5, 6 and 2.5

> I will be married 12 years a week from today.

>

> I have been in pain since my last baby was born, We moved from calif

> to oregon because of the docs where we were from were not very good.

> I see a great specialist now and love him. He at first thought I had

> fibro but my sedrate level kept going up so he tried me on the

> prednisone and it worked so he put me on plaquinel, Now My question

> is. In the last month I have found a few blisters on my face, mainly

> in my chin area, They are in a clust of like 3-4 and red and have

> clear liquid in them, they are the size of a small pea. the cluster.

> I was wondering if this is the starting signs of lupus. I have a

> great family history of it and have 14 different autoammune dies. in

> my family.

>

> any help would be greatly accepted!

> thanks tons

> Cheryle

[Guest guest]

Hi Cheryle, Welcome to the group. I am 41 years old, been married 12

years, and have 2 daughters 22 and 9. I have lived in Oklahoma all

my life. I enjoy this group, there are so many wonderful people here.

I'm not sure about your blisters, please try to get in to your

doctor. Let me know what you find out, I'm interested to here what

it can be. You take care, and so glad your here, Tawny

--- In , " CheryleMOM " <cherylemom@y...>

wrote:

> Hello,

> I am new here, My Name is Cheryle

>

> I am 32 and have 3 kiddos ages 8.5, 6 and 2.5

> I will be married 12 years a week from today.

>

> I have been in pain since my last baby was born, We moved from

calif

> to oregon because of the docs where we were from were not very

good.

> I see a great specialist now and love him. He at first thought I

had

> fibro but my sedrate level kept going up so he tried me on the

> prednisone and it worked so he put me on plaquinel, Now My

question

> is. In the last month I have found a few blisters on my face,

mainly

> in my chin area, They are in a clust of like 3-4 and red and have

> clear liquid in them, they are the size of a small pea. the

cluster.

> I was wondering if this is the starting signs of lupus. I have a

> great family history of it and have 14 different autoammune dies.

in

> my family.

>

> any help would be greatly accepted!

> thanks tons

> Cheryle

[Guest guest]

Cheryle, did either physician give you a diagnosis of your systemic

problems?

The blisters on your chin could be due to something as simple and common

as herpes simplex virus 1 (the virus that causes fever blisters and cold

sores).

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] New here

> Hello,

> Yes He is giving me plaquinel and My general doc is giving me t3 for

the pain and I also take zanaflex at night for sleep. I have been

pretty tired alot so he also said he would give me something for that.

he told me if my gdoc doesnt give me anymore t3s he will start me on

them.

>

> I will be telling him about it. what else could they be from??

>

> <Matsumura_Clan@...> wrote:

> Welcome to the group, Cheryle! Sorry that you are having trouble with

> your health.

>

> Is your physician (I'm assuming a rheumatologist) doing anything to

> treat your pain? Has he given you a diagnosis?

>

> The blisters could be any of several things. It would be a good idea

to

> go in and have your rheumatologist or a dermatologist have a look at

> them.

>

>

>

[Guest guest]

Hi and welcome to the group. I'm have mixed emotions when I see

another new person around my same age. It's good to have people in

this group who can understand having RA and little kids at the same

time, but sad to see anyone in that position too.

I'm 33, was diagnosed about a year ago, and have a daugther who just

turned 4, and I'm recently single. Also, my mom has severe RA she

developed over 20 years ago, so I grew up seeing the effects of RA

before all the great drugs we have today.

Welcome to the group.

Jennie

--- In , " CheryleMOM " <cherylemom@y...>

wrote:

> Hello,

> I am new here, My Name is Cheryle

>

> I am 32 and have 3 kiddos ages 8.5, 6 and 2.5

> I will be married 12 years a week from today.

>

> I have been in pain since my last baby was born, We moved from

calif

> to oregon because of the docs where we were from were not very

good.

> I see a great specialist now and love him. He at first thought I

had

> fibro but my sedrate level kept going up so he tried me on the

> prednisone and it worked so he put me on plaquinel, Now My

question

> is. In the last month I have found a few blisters on my face,

mainly

> in my chin area, They are in a clust of like 3-4 and red and have

> clear liquid in them, they are the size of a small pea. the

cluster.

> I was wondering if this is the starting signs of lupus. I have a

> great family history of it and have 14 different autoammune dies.

in

> my family.

>

> any help would be greatly accepted!

> thanks tons

> Cheryle

[Guest guest]

What kind of withdrawl symptoms did you experience from vioxx?

Welcome to the group!!! I

Cristen

[ ] New here

hello.

my story is pretty long so i'll put in highlights now and fill in the

blanks if others want to hear more.

i am 32 years old and suffered with thyroid problems for the last 12

years. in dec 03 i had a total thyroidectomy. it was very

successful. since that time we are discovering many new diseases in

my body that the thyroid was 'covering up'. a lot of the symptoms are

the same.

so i am recently diagnosed with RA, Sjogrens, osteopenia, some liver

problem we havent figured out yet, and other medical issues. i was

taking vioxx for the last 3 years and had to stop taking that. the

withdrawl was horrible!!! my rheumy put me on plaquenil 200 mg

2x/day. it has only been 3 weeks so i'm not really feeling relief yet.

i also have weight issues and need to loose about 40 pounds, but am

afraid of the pain i'll be left with so dont want to exercise. a

paradox? any ideas on this?

here is something ironic...i live in the desert and was told it was

good for arthritis pain, but recently went on vacation to mexico and

found the humidity was helping me out more. now i'm not planning on

moving but has anyone else found that humidity helps arthritis?

so, any help you can give me would be great. i'm new to arthritis and

am looking for a local support group in my town too.

thanks,

julie

[Guest guest]

, I would like to welcome you in the group. I'm glad that you

found the group, lots of information and great people. You have had

such a bad time, hope things start getting better soon, Tawny

>

>

> hello.

> my story is pretty long so i'll put in highlights now and fill in

the

> blanks if others want to hear more.

>

> i am 32 years old and suffered with thyroid problems for the last 12

> years. in dec 03 i had a total thyroidectomy. it was very

> successful. since that time we are discovering many new diseases in

> my body that the thyroid was 'covering up'. a lot of the symptoms

are

> the same.

>

> so i am recently diagnosed with RA, Sjogrens, osteopenia, some liver

> problem we havent figured out yet, and other medical issues. i was

> taking vioxx for the last 3 years and had to stop taking that. the

> withdrawl was horrible!!! my rheumy put me on plaquenil 200 mg

> 2x/day. it has only been 3 weeks so i'm not really feeling relief

yet.

>

> i also have weight issues and need to loose about 40 pounds, but am

> afraid of the pain i'll be left with so dont want to exercise. a

> paradox? any ideas on this?

>

> here is something ironic...i live in the desert and was told it was

> good for arthritis pain, but recently went on vacation to mexico and

> found the humidity was helping me out more. now i'm not planning on

> moving but has anyone else found that humidity helps arthritis?

>

> so, any help you can give me would be great. i'm new to arthritis

and

> am looking for a local support group in my town too.

> thanks,

> julie

[Guest guest]

Hello Joy

I think your idea is a good one. I have been reading a Sesame Book to

Aedan called , we are all the same we are all different. It is a good book to

give visuals to what you are saying. There are even Asian eyes that Aedan says

are his shape (we are not Asian) I have the book in paper back. Welcome

back to the group.

[Guest guest]

Hi Joy

Aedan is 2. He'll be three in June. He had ptosis surgery when he was

10 weeks. He is scheduled for eye surgery tomorrow. The doc thinks that

strabismus might have been caused by the lack of sight his first few weeks.

Where

are you and ?

[Guest guest]

It sounds to me like you are already doing a good job, I have BPES

and so does my 8 month old daughter. The message you posted are the

things that I worry about most for her, because I remember what I

experienced in early childhood. To be honest, I am impressed that

this is the first time this has been an issue. Lots of kids just ask

questions because they are curious, and it isn't fun when they do,

but it's easier to just explain it and usually kids are okay with

that and then they move on. As far as teasing, deal with it just

like any teasing, stay positive, kids who tease will tease more if

the other child gets upset.

Just curious, has your daughter had any surgery yet? Lily had ptosis

surgery with silicon slings, so far, just to open her eyes.

>

>

> Hello,

>

> I actually found this board a couple years ago, but there was very

> little action. The other day I decided to look again and I couldn't

> believe it :-)

>

> My husband and my 3 yr old daughter have bleph. My husband was the

> first in his family to have it and 20 some years ago, when he had

the

> sling surgery, he was told it was a fluke condition. We did not know

> it was genetic until our daughter was born with it. has been

> seeing a pediatric opthamologist since she was born and her sight is

> fine, so I think any surgery will be off a couple years.

>

> For now my questions aren't surgery related. A couple weeks ago, we

> were at a storytime in a local library and there were three girls

> sitting in front of us. The leader was reading a book and asking

> questions, which my daughter was answering along with many of the

> other children. The three girls kept turning around and looking at

> and then she turned to me and asked why they kept staring at

> her. I was caught a bit off guard and said it was probably because

she

> knew all of the answers, but I'm pretty sure it was because of her

> eyes. I knew this day would come, but I thought it wouldn't be until

> she was in school, and now I'm finding myself unprepared and in a

rush

> to become prepared. So, I'm trying to find a way to start talking

with

> her about it. Basically, I want to give her ways to respond to the

> looks (and the teasing that will surely come her way) and I want her

> to know, really know, that she is a beautiful girl and nothing

anyone

> says will ever change that.

>

> I thought for now, since she's only three, I could start by talking

> about how people look different - different color hair, different

> color skin, different eye shape, etc. Sure, she knows this already,

> but we've never really talked about it past her comments about how

> that little girl has the same hair or that little girl doesn't.

>

> Any suggestions would be greatly appreciated and I look forward to

> corresponding with all of you.

>

> Thanks, Joy

[Guest guest]

Hi Beth,

Thanks for your input. It's nice to hear something from someone who

has been there and done that. My husband doesn't really say too much

about what it was like when he was a child.

has not had any surgery yet. We think she might have some

levator muscle in her eyelids, vs my husband who didn't have any,

because while the eyelid still does not have the crease or roll up,

she does seem to have some control. Of course, the drs won't know

until they are in there during the surgery. The eyelids just hit the

top of her pupils so she hasn't had the head tilting either. And the

skin folds at the corners doesn't seem too bad either. My husband

says his was worse. He isn't happy with the results of his surgeries

(two, the corner work and the sling) so he's leaning toward waiting

longer for 's surgery. Of course, his surgery was 22 years ago -

I'm sure they've come a long way since then. I think we will start

the hunt for a good surgeon in the next year. We talked to only one

surgeon when was less than a year old and he said he would do

the sling and wait for the corner work - I think that's opposite the

normal routine and wonder if he knew what he was talking about. Given

my husband's unhappiness with his surgeries (he has tearing problems,

bad scarring, etc.), we will definitely want a surgeon who has done

this before.

Thanks again for your input. I'll have to check out the pics.

Joy

>

> It sounds to me like you are already doing a good job, I have BPES

> and so does my 8 month old daughter. The message you posted are the

> things that I worry about most for her, because I remember what I

> experienced in early childhood. To be honest, I am impressed that

> this is the first time this has been an issue. Lots of kids just

ask

> questions because they are curious, and it isn't fun when they do,

> but it's easier to just explain it and usually kids are okay with

> that and then they move on. As far as teasing, deal with it just

> like any teasing, stay positive, kids who tease will tease more if

> the other child gets upset.

>

> Just curious, has your daughter had any surgery yet? Lily had

ptosis

> surgery with silicon slings, so far, just to open her eyes.

>

>

>

> --- In blepharophimosis , " Joy " <joybdean@h...>

wrote:

> >

> >

> > Hello,

> >

> > I actually found this board a couple years ago, but there was very

> > little action. The other day I decided to look again and I

couldn't

> > believe it :-)

> >

> > My husband and my 3 yr old daughter have bleph. My husband was the

> > first in his family to have it and 20 some years ago, when he had

> the

> > sling surgery, he was told it was a fluke condition. We did not

know

> > it was genetic until our daughter was born with it. has

been

> > seeing a pediatric opthamologist since she was born and her sight

is

> > fine, so I think any surgery will be off a couple years.

> >

> > For now my questions aren't surgery related. A couple weeks ago,

we

> > were at a storytime in a local library and there were three girls

> > sitting in front of us. The leader was reading a book and asking

> > questions, which my daughter was answering along with many of the

> > other children. The three girls kept turning around and looking at

> > and then she turned to me and asked why they kept staring

at

> > her. I was caught a bit off guard and said it was probably

because

> she

> > knew all of the answers, but I'm pretty sure it was because of her

> > eyes. I knew this day would come, but I thought it wouldn't be

until

> > she was in school, and now I'm finding myself unprepared and in a

> rush

> > to become prepared. So, I'm trying to find a way to start talking

> with

> > her about it. Basically, I want to give her ways to respond to the

> > looks (and the teasing that will surely come her way) and I want

her

> > to know, really know, that she is a beautiful girl and nothing

> anyone

> > says will ever change that.

> >

> > I thought for now, since she's only three, I could start by

talking

> > about how people look different - different color hair, different

> > color skin, different eye shape, etc. Sure, she knows this

already,

> > but we've never really talked about it past her comments about how

> > that little girl has the same hair or that little girl doesn't.

> >

> > Any suggestions would be greatly appreciated and I look forward to

> > corresponding with all of you.

> >

> > Thanks, Joy