Re: Intro to the Group

[Guest guest]

Hi ! You've come to the right place! The people here are

very loving and supporting. They are here to cheer with you and they

and here to scream and cry with you. This is the place to come when

no one else seems to understand what you're going through. Keep

coming back!

Annie

Michigan

>

> Hi, everyone. My name is . I'm 36 yrs. old and live in

> Texas. I was diagnosed with RA, Fibromyalgia & Sjrogren's

Syndrome

> less than a year ago. It's been hard trying to adjust. My

husband and

> I both work full time and are very active in our church. We also

have

> four school age children.

>

> For the longest time, I couldn't think of joining a group like

this. I

> just wanted to try to forget I even have these issues. Of course,

my

> body is not letting me forget!

>

> I'm going through another flare now and my hands and feet are the

big

> losers this time. Any words of encouragement or advice would be

much

> appreciated. I've read a lot of material and have educated myself

and

> my family as well as I can. Having knowledge does not, however,

seem

> to help me cope with the pain and the limitations.

>

> Look forward to meeting you folks. Have a blessed day!

>

[Guest guest]

>

> Hi, everyone. My name is . I'm 36 yrs. old and live in

> Texas. I was diagnosed with RA, Fibromyalgia & Sjrogren's

Syndrome

> less than a year ago. It's been hard trying to adjust. My

husband and

> I both work full time and are very active in our church. We also

have

> four school age children.

>

> For the longest time, I couldn't think of joining a group like

this. I

> just wanted to try to forget I even have these issues. Of course,

my

> body is not letting me forget!

>

> I'm going through another flare now and my hands and feet are the

big

> losers this time. Any words of encouragement or advice would be

much

> appreciated. I've read a lot of material and have educated myself

and

> my family as well as I can. Having knowledge does not, however,

seem

> to help me cope with the pain and the limitations.

>

> Look forward to meeting you folks. Have a blessed day!

>

Hi ,

I myself have RA. I have prayed alot and have had others pray for

me even have been annoited with oil for the healing of my pain. God

has choosen right now not to heal me. But has given the Doctors

wisdom in prescibing meds for me that seems to help the pain. I am

on metrorexate and predizone. I have had flare ups of my feet and

hands before also. I understand what if feels like. You can't

hardley walk. And to write with a pen was all most impossible. I

will put you in my prayers. Marilyn

[Guest guest]

Thanks a million, Marilyn! I am in the same boat as you. Keep the faith! We

don't always understand His ways, but I'm still trusting in Him.

I started with Relafen and Plaquenil. Developed an allergy to Relafen, so I

got off of it and started on Methotrexate. I ended up having to inject because

the pills made me extremely sick. I've been on injectable for almost three

weeks now and the doc is gradually upping the dose. I hope this works because

there are days when I just don't know how much more I can take. There are days

when I wake up asking God for strength to get out of bed and go to work.

Some times I end up missing church and that's really hard for me. It's the

best place for me to be to help me deal with everything. I've got a great

church and I'm so thankful for all the wonderful people God has put into my

life. But when I'm stuck in my bed, hurting so bad that I can't even stand for

the kids to touch me (it hurts them to see me like that and they want to comfort

me), I really struggle with depression.

I also fight feeling guilty because I'm used to being " Super Mom " and doing

everything with my kids. Both my husband and my children have been extremely

understanding and helpful and believe it or not, that somehow makes me feel even

more guilty. I feel like I've missed out on so much with them in the past year.

Thanks for a friendly ear and words of encouragement. I'll be praying for

you, too.

oeayc <amporter@...> wrote:

>

> Hi, everyone. My name is . I'm 36 yrs. old and live in

> Texas. I was diagnosed with RA, Fibromyalgia & Sjrogren's

Syndrome

> less than a year ago. It's been hard trying to adjust. My

husband and

> I both work full time and are very active in our church. We also

have

> four school age children.

>

> For the longest time, I couldn't think of joining a group like

this. I

> just wanted to try to forget I even have these issues. Of course,

my

> body is not letting me forget!

>

> I'm going through another flare now and my hands and feet are the

big

> losers this time. Any words of encouragement or advice would be

much

> appreciated. I've read a lot of material and have educated myself

and

> my family as well as I can. Having knowledge does not, however,

seem

> to help me cope with the pain and the limitations.

>

> Look forward to meeting you folks. Have a blessed day!

>

Hi ,

I myself have RA. I have prayed alot and have had others pray for

me even have been annoited with oil for the healing of my pain. God

has choosen right now not to heal me. But has given the Doctors

wisdom in prescibing meds for me that seems to help the pain. I am

on metrorexate and predizone. I have had flare ups of my feet and

hands before also. I understand what if feels like. You can't

hardley walk. And to write with a pen was all most impossible. I

will put you in my prayers. Marilyn

[Guest guest]

Hi :

Welcome to the family! We are a very supportive and

caring group of people, and our moderators, and

a, post such great information for us.

No, you can't just wish them away or ignore what is

happening, it will not go away, and will eventually

get to the point that you have to admit that it is

here, and for life.

I also have RA and Fibromyalgia, as well as OA and

Raynaud's. What medications are you on? I am on

Enbrel, Mobic, Methotrexate for my RA (which is under

good control), and Lyrica, Cymbalta, Skelaxin,

Zanaflex, and Ambien CR for my Fibro, and take Ultram

ER 300 mg. for pain control of both. The fibro seems

to be my main problem at this time, and has been doing

a number on me recently with the humidity southern

california has been having. Luckily, we are in a

break right now, and I was able to get out for a ride

on my horse - my favorite therapy.

Have you heard of rice socks? they are great. I use

them quite a bit when my joints are painful, as they

can wrap around the joint and really cover the painful

area. Easy to make and easy to use. I also have a

massage mat, and heating pads. Hot showers also help.

Rest, rest and rest when you need to - do not try to

keep on going when your fatigue hits, it will only get

worse, and you will have more pain and stress too.

I have learned to pace myself as far as housework is

concerned - I do about 15 to 30 minutes at a time, one

room at a time, and then rest. If I can, I continue

with it later to finish the room, or it waits until

the next day. You have to learn to live with a little

more dust and disarray, your kids will remember time

you were able to spend with them rather than the dust

on the tables. Also, learn to make quick and easy

meals, in large amounts, so that you can freeze some

for those days that you just cannot cook.

That is great that you are able to continue to work -

what type of work do you do? Does your husband help

with the housework and the kids? You have a very busy

life, it sounds like, just make sure that you do make

time for yourself to sit and relax, and rest, so you

don't run yourself down too much, which will only

cause more pain and fatigue.

We are happy that you found us, but sorry for the

reason. You are among friends here, and we truly do

understand what you are going through. Hang in there

-

Kathe in CA

--- <jenncrew@...> wrote:

> Hi, everyone. My name is . I'm 36 yrs. old

> and live in > Texas. I was diagnosed with RA,

Fibromyalgia & > Sjrogren's Syndrome > less than a year

ago. It's been hard trying to> adjust. My husband

and

> I both work full time and are very active in our

> church. We also have > four school age children.

>

> For the longest time, I couldn't think of joining a

> group like this. I > just wanted to try to forget I

even have these> issues. Of course, my > body is not

letting me forget!

>

> I'm going through another flare now and my hands and

> feet are the big > losers this time. Any words of

encouragement or> advice would be much > appreciated.

I've read a lot of material and have> educated myself

and > my family as well as I can. Having knowledge

does> not, however, seem > to help me cope with the

pain and the limitations.

>

> Look forward to meeting you folks. Have a blessed

> day!

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Kathe:

Thanks for the reply. I started on Relafen and then Plaquenil. I had to get

off the Relafen because I developed an allergy to it and was itching like crazy.

My rheumatologist then put me on Methotrexate and I ended up on the injections

because the pills made me extremely sick. I'm just hoping this works. I've

only been doing the injections for 3 weeks now and on half of the starting dose.

I tried to stay off the Methotrexate which is what the dr. originally wanted

me on because my research showed that it can give you Lymphoma, which my uncle

died of two years ago. And his daughter, my first cousin, has RA and Lupus.

(Yeah, there HAS to be a genetic connection.)

I find it very interesting (and not in a positive way) that most of the

medications they use to treat RA can give you cancer or tear up vital organs

like your kidneys. What amazes me most is that chemotherapy medicines like

Methotrexate that are supposed to kill cancer cells actually can do just the

opposite. Honestly, sometimes, I think doctors have no common sense. Of

course, they are susceptible to the drug-pushing pharmaceutical companies. But,

that's off subject here. At least I'm only taking 3 medications right now

(Plaquenil, Folic Acid and the Methotrexate-which is only injected once/weekly).

So, I'm thankful for that.

Getting adequate rest is the hardest thing for me. Here's my family

situation:

Son Age 17 - Starting Sr. year of high school, plays percussion in band, plays

drums at our church, involved in youth ministry, has entered art and poetry

contests, attended Boys' State and NYLC (National Young Leaders Conference),

etc. AND we are going through the college process. He has been wooed by top

notch universities, including Harvard. I'm excited to see what God has in store

for his life, but trying to keep up with it all is hard on me.

Son Age 14 - Starting high school (9th grade), taking ROTC, also involved in

youth ministry (leadership) and sings in our praise & worship band at church

Song Age 12 - Starting junior high (7th grade), plays french horn in band,

entering athletic program this year and wants to play football and do swimming,

also wants to become a Jr. Fire Fighter next year

Daughter Age 9 - Starting elementary (4th grade) She is a helper/leader in

the Kids' Ministry at our church and also competes in kids ministry projects

like " Human Video "

Then, there's my precious husband, age 39 - he's an insulin dependent diabetic

that takes 5-6 shots per day and also has hypertension and a host of other

issues. He plays the keyboard in our praise & worship band at church. He works

for an electronic manufacturing company full time. He cooks most of the meals

and helps the kids with homework (he gets home around 4:00 p.m. each evening).

He takes good care of me when I'm sick and really babies me. I try to do the

same for him when he's not well. What's really bad is when we both are sick at

the same time. But our kids also take good care of us and can do basic cooking,

etc. They also do ALL of the household chores and take care of the lawn. My

main thing is laundry and my own bedroom/bath, plus some cooking. My husband

and I also share the shopping, although I generally do it more than him.

And me - age 36, I'm a legal assistant, President and Treasurer of our

homeowners' association, I lead praise & worship on Wednesday nights and sing

backup on Sunday mornings and evenings at church.

And, of course, all of this does not include the myriad dynamics of family

life - band concerts, trips to the library, science projects, shopping, laundry,

bills, doctor appointments, birthday parties, family get-togethers, holidays,

blah, blah, blah.

Man, now that I'm writing it down, I can't even believe we get THAT much

accomplished. I actually have a calendar that I keep just for my family stuff.

It's my " little black book " and I've trained hubby & kids to know that if it's

not in the book, it's not getting done. That's how I keep my sanity. Planning

ahead does wonders.

Please tell me about the rice socks. I've discovered that ice helps. When my

right hand was in so much pain last night that I felt like a huge stake was

being driven through it and at the same time that my whole hand was on fire, the

ice made it much better. At first, I didn't want to use ice, but my doc said it

was best for the swelling.

I do rest as much as possible, but it never seems to be enough. Fatigue has

been my biggest ongoing complaint - and I've been complaining about fatigue for

the past FOUR YEARS. First, they thought I was depressed, then they thought it

was thyroid, etc. Now, I finally know it was the RA all along. The joint pain

comes and goes...the fatigue lingers on.

Thanks for your tips, advice and encouragement. I apologize for the length of

my response, but I tried to answer your questions and give you insight into my

situation.

God bless you!

Kathe Sabetzadeh <lv2ryd@...> wrote:

Hi :

Welcome to the family! We are a very supportive and

caring group of people, and our moderators, and

a, post such great information for us.

No, you can't just wish them away or ignore what is

happening, it will not go away, and will eventually

get to the point that you have to admit that it is

here, and for life.

I also have RA and Fibromyalgia, as well as OA and

Raynaud's. What medications are you on? I am on

Enbrel, Mobic, Methotrexate for my RA (which is under

good control), and Lyrica, Cymbalta, Skelaxin,

Zanaflex, and Ambien CR for my Fibro, and take Ultram

ER 300 mg. for pain control of both. The fibro seems

to be my main problem at this time, and has been doing

a number on me recently with the humidity southern

california has been having. Luckily, we are in a

break right now, and I was able to get out for a ride

on my horse - my favorite therapy.

Have you heard of rice socks? they are great. I use

them quite a bit when my joints are painful, as they

can wrap around the joint and really cover the painful

area. Easy to make and easy to use. I also have a

massage mat, and heating pads. Hot showers also help.

Rest, rest and rest when you need to - do not try to

keep on going when your fatigue hits, it will only get

worse, and you will have more pain and stress too.

I have learned to pace myself as far as housework is

concerned - I do about 15 to 30 minutes at a time, one

room at a time, and then rest. If I can, I continue

with it later to finish the room, or it waits until

the next day. You have to learn to live with a little

more dust and disarray, your kids will remember time

you were able to spend with them rather than the dust

on the tables. Also, learn to make quick and easy

meals, in large amounts, so that you can freeze some

for those days that you just cannot cook.

That is great that you are able to continue to work -

what type of work do you do? Does your husband help

with the housework and the kids? You have a very busy

life, it sounds like, just make sure that you do make

time for yourself to sit and relax, and rest, so you

don't run yourself down too much, which will only

cause more pain and fatigue.

We are happy that you found us, but sorry for the

reason. You are among friends here, and we truly do

understand what you are going through. Hang in there

-

Kathe in CA

--- <jenncrew@...> wrote:

> Hi, everyone. My name is . I'm 36 yrs. old

> and live in > Texas. I was diagnosed with RA,

Fibromyalgia & > Sjrogren's Syndrome > less than a year

ago. It's been hard trying to> adjust. My husband

and

> I both work full time and are very active in our

> church. We also have > four school age children.

>

> For the longest time, I couldn't think of joining a

> group like this. I > just wanted to try to forget I

even have these> issues. Of course, my > body is not

letting me forget!

>

> I'm going through another flare now and my hands and

> feet are the big > losers this time. Any words of

encouragement or> advice would be much > appreciated.

I've read a lot of material and have> educated myself

and > my family as well as I can. Having knowledge

does> not, however, seem > to help me cope with the

pain and the limitations.

>

> Look forward to meeting you folks. Have a blessed

> day!

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

Educating yourself about the conditions is key I think. Finding an

excellent compassionate doctor is also important. Staying active in

the church can be a reliable support system base but nothing takes the

place of talking to others traveling or have traveled the road you are

now traveling. They can tell you about the pitfalls along the way or

rest areas up ahead. I think you will like it here. A nice

supportive, caring group. There are many here, although we all take

breaks from the message board from time to time to heal, rest, or just

to catch up on the messages.

Sending gentle hugs.

Peace and healing energy to you.

[Guest guest]

Hi , I am also 36 and live in Texas, Bedford. I have RA,

dx'ed a little over a year ago. Two children, one hubby. I don't

comment very much just read but I am here if you need anything. This

is a great group and wonderful people to be associated with. Cassy

>

> Hi, everyone. My name is . I'm 36 yrs. old and live in

> Texas. I was diagnosed with RA, Fibromyalgia & Sjrogren's Syndrome

>

[Guest guest]

Thanks for your reply. I am already overwhelmed with the number of responses,

well wishes and advice. I couldn't get to my e-mail over the weekend and have

50 messages! It's good to know you're not alone. Very nice to meet you, Cassy.

God bless,

cnberte <bertelson@...> wrote:

Hi , I am also 36 and live in Texas, Bedford. I have RA,

dx'ed a little over a year ago. Two children, one hubby. I don't

comment very much just read but I am here if you need anything. This

is a great group and wonderful people to be associated with. Cassy

>

> Hi, everyone. My name is . I'm 36 yrs. old and live in

> Texas. I was diagnosed with RA, Fibromyalgia & Sjrogren's Syndrome

>