New Diagnosis and Very Scared

[Guest guest]

Hello everyone, my name is Christy and I am a 34 year old single mom

of 2 VERY active little boys (8) and (11). I was diagnosed with RA

last year after sudden inflammation and swelling of both wrists. I

was sent to a Rheumatologist the next week and my blood work has

been all out of whack ever since. I currently take Methotrexate and

Folic Acid and some kind of other med for the hair thinning and loss

that has been associated with the Methotrexate. I can't think of

the name of that med right now. My doctor called Monday and told me

that my Liver enzymes were elevated and for me to cut the MTX in

half for now and do more bloodwork next week. He had planned to

wait until October to begin Remicade treatments but he scheduled me

for an appointment on September 18th instead. I have done some

research on the Remicade and I know that it is given by IV and how

often, but I am curious as to whether they leave an access port in

or if they start from the beginning each time. I really am pretty

nervous about this treatment because of the risk of serious

infections. Can anyone give me some advice on this medication and

it's side effects.

I am learning to deal with the effects of the RA (trying anyway).

My kids don't seem to understand sometimes but they are very

supportive and they help me out alot on my bad days. They are my

biggest concern with living with RA. I don't want to limit their

teenage years and the activities that go along with them. Sorry, I

just need to talk about it sometimes with those who understand what

I am going through and the messages from this group have been very

helpful so far. Thanks for listening!!

[Guest guest]

There is no port unless you have horrible venous access then your doc many

want you to have a surgery to have an access port implanted.

Its like getting an IV started each time you go to get your remicaide. I

wonder why your doc did not give you a choice and let you try one of the self

injected biologics like Enbrel or Humira first?

I have never taken remicaide so I am sure someone else in the group will

speak up and can give you first hand advice on that. I could not take

remicaide

cause I have really horrible veins and its just too costly.

Good luck

Toni

[Guest guest]

Hi! Christy, welcome to the group, I am new here.I feel for you and know how

much it hurts and how scary it all is, even more so with small kids.I don't

have any small ones except for my neice who lives with me and she is 12

going on 20. Then my 21 yr. old daughter who is intelluctally disabled. Days

that I hurt so bad, seems like they don't understand, but yet my 21 yr. old

hovers over me like a mother hen. I can't help with the Remicade med. but I

am on enbrel, for a month now. I have to inject once a week. I do know that

the Remi. is every four or six weeks, and from what I have read it seems

that it will be IV eachtime I have not read anything about people using it

having a port. But I will say this many on this support group will defintely

answer your questions and find someone who can if they can't. God Bless and

Good Luck to you, and again Welcome.

Rhonda

From: " christyhfl " <chamby33@...>

< >

Sent: Friday, August 25, 2006 9:46 AM

Subject: [ ] New Diagnosis and Very Scared

> Hello everyone, my name is Christy and I am a 34 year old single mom

> of 2 VERY active little boys (8) and (11). I was diagnosed with RA

> last year after sudden inflammation and swelling of both wrists. I

> was sent to a Rheumatologist the next week and my blood work has

> been all out of whack ever since. I currently take Methotrexate and

> Folic Acid and some kind of other med for the hair thinning and loss

> that has been associated with the Methotrexate. I can't think of

> the name of that med right now. My doctor called Monday and told me

> that my Liver enzymes were elevated and for me to cut the MTX in

> half for now and do more bloodwork next week. He had planned to

> wait until October to begin Remicade treatments but he scheduled me

> for an appointment on September 18th instead. I have done some

> research on the Remicade and I know that it is given by IV and how

> often, but I am curious as to whether they leave an access port in

> or if they start from the beginning each time. I really am pretty

> nervous about this treatment because of the risk of serious

> infections. Can anyone give me some advice on this medication and

> it's side effects.

>

> I am learning to deal with the effects of the RA (trying anyway).

> My kids don't seem to understand sometimes but they are very

> supportive and they help me out alot on my bad days. They are my

> biggest concern with living with RA. I don't want to limit their

> teenage years and the activities that go along with them. Sorry, I

> just need to talk about it sometimes with those who understand what

> I am going through and the messages from this group have been very

> helpful so far. Thanks for listening!!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

>

> There is no port unless you have horrible venous access then your

doc many

> want you to have a surgery to have an access port implanted.

>

> Its like getting an IV started each time you go to get your

remicaide. I

> wonder why your doc did not give you a choice and let you try one

of the self

> injected biologics like Enbrel or Humira first?

>

> I have never taken remicaide so I am sure someone else in the

group will

> speak up and can give you first hand advice on that. I could not

take remicaide

> cause I have really horrible veins and its just too costly.

>

> Good luck

>

> Toni

>

>

>

[Guest guest]

Hi Shine,

Thanks for your support. I really like this group and the information that I

have received has been really helpful. It is very hard for anyone, no matter

what age, to deal with RA and it's effects. But to have someone to talk to who

knows what it is like and can just give you the encouragement to go through

another day is more than I could ever ask for. Today was my MTX day and I am

pretty sick to my stomach, so I needed to get online and read all the e-mails

from the weekend. Thank you to everyone who has posted and I hope that everyone

has a wonderful pain-free week.

Christy

shine190 <shine190@...> wrote:

Hi! Christy, welcome to the group, I am new here.I feel for you and

know how

much it hurts and how scary it all is, even more so with small kids.I don't

have any small ones except for my neice who lives with me and she is 12

going on 20. Then my 21 yr. old daughter who is intelluctally disabled. Days

that I hurt so bad, seems like they don't understand, but yet my 21 yr. old

hovers over me like a mother hen. I can't help with the Remicade med. but I

am on enbrel, for a month now. I have to inject once a week. I do know that

the Remi. is every four or six weeks, and from what I have read it seems

that it will be IV eachtime I have not read anything about people using it

having a port. But I will say this many on this support group will defintely

answer your questions and find someone who can if they can't. God Bless and

Good Luck to you, and again Welcome.

Rhonda

From: " christyhfl " <chamby33@...>

< >

Sent: Friday, August 25, 2006 9:46 AM

Subject: [ ] New Diagnosis and Very Scared

> Hello everyone, my name is Christy and I am a 34 year old single mom

> of 2 VERY active little boys (8) and (11). I was diagnosed with RA

> last year after sudden inflammation and swelling of both wrists. I

> was sent to a Rheumatologist the next week and my blood work has

> been all out of whack ever since. I currently take Methotrexate and

> Folic Acid and some kind of other med for the hair thinning and loss

> that has been associated with the Methotrexate. I can't think of

> the name of that med right now. My doctor called Monday and told me

> that my Liver enzymes were elevated and for me to cut the MTX in

> half for now and do more bloodwork next week. He had planned to

> wait until October to begin Remicade treatments but he scheduled me

> for an appointment on September 18th instead. I have done some

> research on the Remicade and I know that it is given by IV and how

> often, but I am curious as to whether they leave an access port in

> or if they start from the beginning each time. I really am pretty

> nervous about this treatment because of the risk of serious

> infections. Can anyone give me some advice on this medication and

> it's side effects.

>

> I am learning to deal with the effects of the RA (trying anyway).

> My kids don't seem to understand sometimes but they are very

> supportive and they help me out alot on my bad days. They are my

> biggest concern with living with RA. I don't want to limit their

> teenage years and the activities that go along with them. Sorry, I

> just need to talk about it sometimes with those who understand what

> I am going through and the messages from this group have been very

> helpful so far. Thanks for listening!!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello Christy! I am also newly diagnosed and have 2 small children at home,

ages 3 & 5. How do you cope with all of the pain and manage your time with your

children? My oldest will start school next week, so I am pretty worried about

how my younger daughter will cope without her best friend. I can't even hold a

crayon very long to help her color.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

[Guest guest]

Hi Lori,

Coping with the pain is not an easy task all by itself. But finding time is

even harder. Luckily, my children are a little older and are growing accustomed

to the pain that I suffer from. They know that when I wake up and can't even

raise my arms to pull my shirt on that I am having a flare and bless their

hearts, they are willing to help me out. I hate to admit it, but there have

been times that my oldest son has helped me to get dressed. I know that when he

gets older, that it will be ackward for him to do that, but I am so proud of him

for loving me enough to want to help me.

Your youngest daughter will probably do alot of searching for the sister who

is missing (at school). That is normal. My boys did the same thing. Josh, my

youngest, thought that Kaleb was attached to his hip, until school started. One

thing that I did, was I put him in a daycare so that he still had interaction

with other kids. He might not be there all day, but at least he had some

interaction. Before long, I would pick him up and he wouldn't want to leave

yet. I am not saying that daycare is the best thing for young children, but it

did help with the separation anxiety between my boys.

I understand about the pain with holding crayons for any length of time. I

work in an office and I can't use a regular size pen for very long at a time. I

use the " fat " pens, as my boys call them. I can grip them better. During

flares, it is hard to grip anything, especially a small pen or pencil.

I hope that your symptoms improve and I wish you luck with your children. As

they get older, whether you want them to know about your pain or not, they

will. They will eventually see it in your face and notice that there are things

that mom can't do. They will love you anyway and in my case, it brought us

closer together. I am divorced and it is only me and my children, so they have

learned that they have to step up and be little men sometimes. I keep the

refrigerator stocked with easy to make meals, just in case I am not able to cook

dinner one night. That way, Kaleb can go to the frige and get out something

that can be put in the microwave or he can put on a pan and put it in the oven.

He is very good about that. And, of course, they had rather have that kind of

meal than a home cooked one anyway.

I hope that I could help in some way. If you need to talk feel free to e-mail

me direct at chamby33@... anytime. I talk alot but I am a really good

listener too.

Talk to you soon,

Christy

Stitching Queen <stitchingqueen@...> wrote:

Hello Christy! I am also newly diagnosed and have 2 small children at

home, ages 3 & 5. How do you cope with all of the pain and manage your time with

your children? My oldest will start school next week, so I am pretty worried

about how my younger daughter will cope without her best friend. I can't even

hold a crayon very long to help her color.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

[Guest guest]

Your Welcome, but I am glad I am not on that MTX anymore it gave me mouth

ulcers, but to the sick to the stomach it never done that to me, but it did

not work for me as it does others. So best of luck with yours maybe it will

work for you. Let me know how you are doing.God Bless and painfree days.

Rhonda

[ ] New Diagnosis and Very Scared

> Hello everyone, my name is Christy and I am a 34 year old single mom

> of 2 VERY active little boys (8) and (11). I was diagnosed with RA

> last year after sudden inflammation and swelling of both wrists. I

> was sent to a Rheumatologist the next week and my blood work has

> been all out of whack ever since. I currently take Methotrexate and

> Folic Acid and some kind of other med for the hair thinning and loss

> that has been associated with the Methotrexate. I can't think of

> the name of that med right now. My doctor called Monday and told me

> that my Liver enzymes were elevated and for me to cut the MTX in

> half for now and do more bloodwork next week. He had planned to

> wait until October to begin Remicade treatments but he scheduled me

> for an appointment on September 18th instead. I have done some

> research on the Remicade and I know that it is given by IV and how

> often, but I am curious as to whether they leave an access port in

> or if they start from the beginning each time. I really am pretty

> nervous about this treatment because of the risk of serious

> infections. Can anyone give me some advice on this medication and

> it's side effects.

>

> I am learning to deal with the effects of the RA (trying anyway).

> My kids don't seem to understand sometimes but they are very

> supportive and they help me out alot on my bad days. They are my

> biggest concern with living with RA. I don't want to limit their

> teenage years and the activities that go along with them. Sorry, I

> just need to talk about it sometimes with those who understand what

> I am going through and the messages from this group have been very

> helpful so far. Thanks for listening!!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Christy!

It sounds to me like you are blessed with two great kids! I think that being

able to help out gives them a sense of control over something that they have

little say over and maybe makes it a little easier for them to bare the brunt of

watching you suffer in pain. My kids have started asking for chores! I don't

know where they came up with the idea, but my 5 year old wants to take out the

garbage! The other day I was setting the dinner table and asked my 5 year old

to set the napkins. She thanked me for asking her for her help and asked if she

could put out the silverware too! Then the 3 year old ran in and wanted to know

what she could do to help. I know that this type of behavior will not last, but

I think it is hysterical that they want chores!

I'm not going to put my little one in daycare/preschool until I absolutely have

to. This is the first time in her life that we will actually get quality 1 on 1

time - everything now is done with my eldest. So while I'm able, I want to be

there for her as much as possible.

It is inspiring to hear that you handle all of this by yourself. I'm lucky to

be married to someone who is there for me. I can't wait for him to come home at

night because I am so exhausted! I'm pretty much just pushing through the

fatigue, but it is really hard. Do any of the medications help alleviate the

fatigue, or do they make it worse? I don't tolerate NSAIDs at all (they all

make me sick & even more fatigued) and I don't get to the rheumatologist until

next Friday (took awhile to get an appointment) so I don't know what type of

DMARD or Biologic I will be put on.

Talk to you later!

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

Re: [ ] Re: New Diagnosis and Very Scared

Hi Lori,

Coping with the pain is not an easy task all by itself. But finding time is

even harder. Luckily, my children are a little older and are growing accustomed

to the pain that I suffer from. They know that when I wake up and can't even

raise my arms to pull my shirt on that I am having a flare and bless their

hearts, they are willing to help me out. I hate to admit it, but there have been

times that my oldest son has helped me to get dressed. I know that when he gets

older, that it will be ackward for him to do that, but I am so proud of him for

loving me enough to want to help me.

Your youngest daughter will probably do alot of searching for the sister who

is missing (at school). That is normal. My boys did the same thing. Josh, my

youngest, thought that Kaleb was attached to his hip, until school started. One

thing that I did, was I put him in a daycare so that he still had interaction

with other kids. He might not be there all day, but at least he had some

interaction. Before long, I would pick him up and he wouldn't want to leave yet.

I am not saying that daycare is the best thing for young children, but it did

help with the separation anxiety between my boys.

I understand about the pain with holding crayons for any length of time. I

work in an office and I can't use a regular size pen for very long at a time. I

use the " fat " pens, as my boys call them. I can grip them better. During flares,

it is hard to grip anything, especially a small pen or pencil.

I hope that your symptoms improve and I wish you luck with your children. As

they get older, whether you want them to know about your pain or not, they will.

They will eventually see it in your face and notice that there are things that

mom can't do. They will love you anyway and in my case, it brought us closer

together. I am divorced and it is only me and my children, so they have learned

that they have to step up and be little men sometimes. I keep the refrigerator

stocked with easy to make meals, just in case I am not able to cook dinner one

night. That way, Kaleb can go to the frige and get out something that can be put

in the microwave or he can put on a pan and put it in the oven. He is very good

about that. And, of course, they had rather have that kind of meal than a home

cooked one anyway.

I hope that I could help in some way. If you need to talk feel free to e-mail

me direct at chamby33@... anytime. I talk alot but I am a really good

listener too.

Talk to you soon,

Christy

Stitching Queen <stitchingqueen@...> wrote:

Hello Christy! I am also newly diagnosed and have 2 small children at home,

ages 3 & 5. How do you cope with all of the pain and manage your time with your

children? My oldest will start school next week, so I am pretty worried about

how my younger daughter will cope without her best friend. I can't even hold a

crayon very long to help her color.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

[Guest guest]

Enbrel does help with the fatigue, at least for me. Sue

On Tuesday, August 29, 2006, at 03:59 PM, Stitching Queen wrote:

> Do any of the medications help alleviate the fatigue, or do they make

> it worse?

[Guest guest]

Lori,

I wish that I had an answer for the fatigue that you feel. To be honest, I

have alot of fatigue. I have not found anything that helps. The folic acid

that I take with the Methotrexate helps a little, but by the end of the work

day, I am exhausted.

I completely understand not putting your daughter in daycare. This is

definitely a great time to spend one on one with her. I really didn't have the

option of staying home with my kids after their dad left, but at least now we

have our afternoons and evenings, that is when I am not sick or in so much pain.

But even then they are great about taking care of me. Just as your daughters

want to help with setting the table, my boys take pride in being the men of the

house sometimes. They are truly a blessing to me.

Today, my children are at work with me and helping me out. We are in the

middle of Tropical Storm Ernesto right now and the schools are closed as a

precaution because of the bad weather. I live in Polk County FL. We learned

alot from the last couple of years worth of storms and the schools close even if

there is a threat of bad weather. So today the kids are going to help me work.

LOL They are very excited.

I wish that I could be more help with the fatigue problem that you are having.

Just know that you are not alone and if I find anything that helps, I will

definitely pass it along. Have a wonderful, pain-free day.

Christy

Stitching Queen <stitchingqueen@...> wrote:

Hi Christy!

It sounds to me like you are blessed with two great kids! I think that being

able to help out gives them a sense of control over something that they have

little say over and maybe makes it a little easier for them to bare the brunt of

watching you suffer in pain. My kids have started asking for chores! I don't

know where they came up with the idea, but my 5 year old wants to take out the

garbage! The other day I was setting the dinner table and asked my 5 year old to

set the napkins. She thanked me for asking her for her help and asked if she

could put out the silverware too! Then the 3 year old ran in and wanted to know

what she could do to help. I know that this type of behavior will not last, but

I think it is hysterical that they want chores!

I'm not going to put my little one in daycare/preschool until I absolutely have

to. This is the first time in her life that we will actually get quality 1 on 1

time - everything now is done with my eldest. So while I'm able, I want to be

there for her as much as possible.

It is inspiring to hear that you handle all of this by yourself. I'm lucky to be

married to someone who is there for me. I can't wait for him to come home at

night because I am so exhausted! I'm pretty much just pushing through the

fatigue, but it is really hard. Do any of the medications help alleviate the

fatigue, or do they make it worse? I don't tolerate NSAIDs at all (they all make

me sick & even more fatigued) and I don't get to the rheumatologist until next

Friday (took awhile to get an appointment) so I don't know what type of DMARD or

Biologic I will be put on.

Talk to you later!

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

Re: [ ] Re: New Diagnosis and Very Scared

Hi Lori,

Coping with the pain is not an easy task all by itself. But finding time is even

harder. Luckily, my children are a little older and are growing accustomed to

the pain that I suffer from. They know that when I wake up and can't even raise

my arms to pull my shirt on that I am having a flare and bless their hearts,

they are willing to help me out. I hate to admit it, but there have been times

that my oldest son has helped me to get dressed. I know that when he gets older,

that it will be ackward for him to do that, but I am so proud of him for loving

me enough to want to help me.

Your youngest daughter will probably do alot of searching for the sister who is

missing (at school). That is normal. My boys did the same thing. Josh, my

youngest, thought that Kaleb was attached to his hip, until school started. One

thing that I did, was I put him in a daycare so that he still had interaction

with other kids. He might not be there all day, but at least he had some

interaction. Before long, I would pick him up and he wouldn't want to leave yet.

I am not saying that daycare is the best thing for young children, but it did

help with the separation anxiety between my boys.

I understand about the pain with holding crayons for any length of time. I work

in an office and I can't use a regular size pen for very long at a time. I use

the " fat " pens, as my boys call them. I can grip them better. During flares, it

is hard to grip anything, especially a small pen or pencil.

I hope that your symptoms improve and I wish you luck with your children. As

they get older, whether you want them to know about your pain or not, they will.

They will eventually see it in your face and notice that there are things that

mom can't do. They will love you anyway and in my case, it brought us closer

together. I am divorced and it is only me and my children, so they have learned

that they have to step up and be little men sometimes. I keep the refrigerator

stocked with easy to make meals, just in case I am not able to cook dinner one

night. That way, Kaleb can go to the frige and get out something that can be put

in the microwave or he can put on a pan and put it in the oven. He is very good

about that. And, of course, they had rather have that kind of meal than a home

cooked one anyway.

I hope that I could help in some way. If you need to talk feel free to e-mail me

direct at chamby33@... anytime. I talk alot but I am a really good

listener too.

Talk to you soon,

Christy

Stitching Queen <stitchingqueen@...> wrote:

Hello Christy! I am also newly diagnosed and have 2 small children at home, ages

3 & 5. How do you cope with all of the pain and manage your time with your

children? My oldest will start school next week, so I am pretty worried about

how my younger daughter will cope without her best friend. I can't even hold a

crayon very long to help her color.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

[Guest guest]

Thanks Christy! Hopefully the storm doesn't cause you any significant

headaches! It is just nice knowing that there is a group out here that

understands what I'm going through. It is hard for my family to truly grasp the

amount of pain I'm in and just what a huge pain RA is going to mean for us.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html

Re: [ ] Re: New Diagnosis and Very Scared

Hi Lori,

Coping with the pain is not an easy task all by itself. But finding time is

even harder. Luckily, my children are a little older and are growing accustomed

to the pain that I suffer from. They know that when I wake up and can't even

raise my arms to pull my shirt on that I am having a flare and bless their

hearts, they are willing to help me out. I hate to admit it, but there have been

times that my oldest son has helped me to get dressed. I know that when he gets

older, that it will be ackward for him to do that, but I am so proud of him for

loving me enough to want to help me.

Your youngest daughter will probably do alot of searching for the sister who

is missing (at school). That is normal. My boys did the same thing. Josh, my

youngest, thought that Kaleb was attached to his hip, until school started. One

thing that I did, was I put him in a daycare so that he still had interaction

with other kids. He might not be there all day, but at least he had some

interaction. Before long, I would pick him up and he wouldn't want to leave yet.

I am not saying that daycare is the best thing for young children, but it did

help with the separation anxiety between my boys.

I understand about the pain with holding crayons for any length of time. I

work in an office and I can't use a regular size pen for very long at a time. I

use the " fat " pens, as my boys call them. I can grip them better. During flares,

it is hard to grip anything, especially a small pen or pencil.

I hope that your symptoms improve and I wish you luck with your children. As

they get older, whether you want them to know about your pain or not, they will.

They will eventually see it in your face and notice that there are things that

mom can't do. They will love you anyway and in my case, it brought us closer

together. I am divorced and it is only me and my children, so they have learned

that they have to step up and be little men sometimes. I keep the refrigerator

stocked with easy to make meals, just in case I am not able to cook dinner one

night. That way, Kaleb can go to the frige and get out something that can be put

in the microwave or he can put on a pan and put it in the oven. He is very good

about that. And, of course, they had rather have that kind of meal than a home

cooked one anyway.

I hope that I could help in some way. If you need to talk feel free to e-mail

me direct at chamby33@... anytime. I talk alot but I am a really good

listener too.

Talk to you soon,

Christy

Stitching Queen <stitchingqueen@...> wrote:

Hello Christy! I am also newly diagnosed and have 2 small children at home,

ages 3 & 5. How do you cope with all of the pain and manage your time with your

children? My oldest will start school next week, so I am pretty worried about

how my younger daughter will cope without her best friend. I can't even hold a

crayon very long to help her color.

Lori

http://users.adelphia.net/~tmihalko/Stitching/index.html