Re: New to Group - warning, this is long lol .....................

[Guest guest]

Hi :

My children (young adults, but they will always be my

" kids " ), are daughter 19 and son 22. I well know how

they treasure their independence, even though both

still live at home. I have great communication with

both of them, but they do like to have control on what

happens in their lives without our having to know

every little thing they are dealing with.

With what your daughter is going through, however,

your not getting involved, and letting her pretend it

is not happening is the worst thing you could do. RA

is a very serious disease and needs aggressive early

treatment in order to avoid joint destruction. RA is a

total body disease, all connective tissue is affected,

and your immune system is out of whack. I hope that

the doctor has her on more than just Relafen for her

RA. Pain meds and anti-inflammatories only mask the

problem and do nothing to affect the disease process

itself. She needs medication that will slow down the

progression of the disease and the joint destruction

These meds are DMARDs (disease modifying drugs) like

methotrexate or Plaquenil.

Your daughter probably thinks she can handle this on

her own, but being alone in this disease is so very

hard. You really need all the family and friend

support you can get. That you are researching the net

to find out about RA shows the love that you have for

her - knowledge is power. I would hope that she will

learn as much as she can as well. The tricky part is

how you are going to let her know that you are aware

of the pain and difficulty she is having with the RA,

know it is also affecting her ability to keep up in

her classes, and do so without seeming like an

interferring mom. A fine balance.

With her classes, softball, and the work on the task

forces, and fighting RA, the fatigue can be so

overwhelming. It's not like the fatigue you would

have if you played a game of softball, rested, and

then you were fine again. No amount of rest can help

this fatigue, and it is always with you. She needs to

cut down on some of the extra-curricular activities so

that she can rest more, and thus cut down on her

stress. Stress causes more pain, pain causes more

stress, etc. When she gets her disease under control,

she might still be able to still play on the softball

team, but while the disease is as active as it seems

to be, she really should cut down so that she can give

her body time to deal with all that is going on with

her immune system.

Wow, at 45, I was shocked by the RA diagnosis - I

cannot even imagine how I would have handled it at

only 21, and in college, on the softball team, dating,

going out with friends, and always being able to use

my body as I wished in very active ways, and having

energy - and then it's all gone from you by way of a

disease you have very little control over, unless you

get the proper treatment. She must be in terrible

emotional pain as well as physical pain.

You daughter is probably in denial of the disease and

is trying to live as she did, which with the pain,

swelling, and stiffness is pretty much impossible.

She also does not want to run to mommy, as much as she

probably does inside, because she feels she would

loose that independence. You do need to let her know

that you know what she is going through, and as her

mother, you are here to help her through it, and want

to be involved in what she is going through. I am sure

she is very confused and very upset at what she is

going through - and the future looks pretty bad if

this is what it is going to be like. Let her know

that there is hope with the proper treatment. There

are a lot of new meds out there, and more in research,

and she has a very good chance of getting control of

the RA.

You need to have a sit down with your daughter, let

her know how much you care about her, respect her

independence, but that you know what she has been

going through, and want to help her. Take her to the

rheumy, make sure that she gets on the right treatment

program, and be there to support her in any way you

can. No one can predict the outcome of RA in a

particular person, and how it will ultimately affect

her, but with good medication there is so much more

hope than there used to be.

She will go through stages of denial, anger,

depression, and acceptance, although some anger and

depression will probably remain, especially when the

disease is more active " flares " , and the pain and

stiffness is worse. It's like the disease has the

power to take away parts of who we are, and how we had

planned to live our lives. And it is very scary to

not know what will happen, what is our future to look

like. It's hard enough to ask for help at 51, but to

ask for help at 21, when you are supposed to be so

healthy and independent, will be so very hard for her

to do. Especially since she is so used to being

active and busy and in charge of her life. She's

going to need her mom, believe me.

Anyway, just some thoughts for you (my gosh, I have

written a short story here lol), but emphasize that

there are so many meds available to her that were not

available in the past, and there is more hope, and

more research being done now than ever before, so I

hope for a cure one day in the hopefully near future.

If you have any more questions or comments, please

don't hesitate to contact me privately if you want by

my email, or continue writing to this group. This is

the best bunch of caring and supportive people you

will ever find. Best of all, get your daughter to

contact us, as we do have young members that she could

relate to more.

I wish you both the best of luck - prayers are with

you too -

Kathe in CA

--- <SDSinback@...> wrote:

> Hi everyone:

>

> My daughter, who just turned 21, has been diagnosed

> with RA. She is a

> college student on an athletic scholarship for

> softball and has had

> pain for over a year but it was treated as sports

> injuries until just

> recently. She is very physically fit, not

> overweight and usually very

> active.

>

> She is not doing well, she is extremely fatigued,

> having trouble with

> her classes, in a lot of pain, right now she has a

> lot of pain and

> swelling in her hands and wrists. She wakes up very

> swollen and in a

> lot of pain most mornings.

>

> Of course, she does not want to give up softball,

> she is on the dean's

> list but has gotten two " F's " this semester and is

> having trouble

> keeping up with her activities and classes. She is

> on several

> university task forces and very busy.

>

> Right now she is on Relafen, she was on something

> else, began with

> an " N " for a few weeks but that affected her vision.

>

>

> And, she is away, the rheumatologist is here, hard

> to get her home, I

> am torn between dragging her home or letting her

> work it out herself,

> because, after all, she is 21 and doesn't need me to

> take care of her

> any longer. The only reason I know she is not doing

> well is her

> roommate told me.

>

> Does anyone have any ideas that I can pass on to her

> to try to help her

> out? I have been reading everything I can find

> online but I find most

> of the information confusing and sometimes even

> contradictory.

>

>

>

>

>

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

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