Carol - sensitive subjects

February 19, 2004

Carol,

I hope that you will reconsider about sending sensitive subjects via

private email in the future and that anyone else out there will not

do that.

I know it is extremely hard to feel that we are criticized by what we

do and how we live our lives but all of us are helping others out

there on a daily basis.

I know how hurtful small comments can be but I hope you will know

that most of us know what you are going through and understand. It

is very difficult for a person who has a mild case of RA to

understand what a person with a moderate to severe or severe case

is. Each of us is different.

Exercise and education are good for all of us.

Having an open mind is paramount to " supporting " people within a

support group.

I hope for 's sake that she never experiences the pain that a

lot of us have with RA and that she never develops anything else

wrong but I have to say that I doubt that that will be the case as RA

is a progressive disease. It can be halted temporarilly but the

fight is always to stay a foot ahead and if you pur your head in the

sand about it you will be left behind.

Education in the medical field is always evolving. Just think - 10

years ago people with RA didn't have the drugs to combat it that we

do today. Anyone diagnosed today with RA will have a much better

chance of not becoming disfigured or disabiled but those who had it

before then can only be helped by the drugs of today. The clodk can

not be turned back for them.

I have moderate to severe RA and it is a constant battle. I have had

3 operations to combat side effects from my disease. I consider

myself lucky that I have a great RA who is willing to go after my

disease with everything out there.

I take MTX once a week. I have taken as much as 20 mg a week and am

at the present down to 6 mg. I take Remicade - once every 8 weeks.

I would almost be willing to commit murder if that was the only way I

could get the Remicade. It has made that much of a difference in my

life. I have Lortab for those days where the pain just won't go

away. I have skellaxin as a mild muscle relaxer to help me too.

I wouldn't give up my drugs for anything. I also eat a very balanced

diet and when I can I do mild exercises but I can't do them all the

time.

I went through 2 years of intense fog when I first came down with RA

and didn't know what was happening to me. I support each person here

and would recommend that before people criticize someone else for the

medications they take or their lack of exercise that they try to walk

in that person shoes first.

Read and find out why that person is doing what they are doing or ask

them their history first before saying something that might hurt

hteir feelings. We are hurting enough not to have to waste the

precious energy we have worrying about somehting we shouldn't have to.

I applaud each and every person here who is willing to open

themselves up to ask questions and give answers in a very public

atmosphere.

God bless,

Althea

February 19, 2004

Hi Althea,

What you said is so sweet. I’ve never felt the need to refrain from sharing

sensitive topics, obviously since I posted about such personal distress.

This has always been such an open, caring forum where we could say anything.

People might think something, but to state that, “I am determined not to

let this disease make me an invalid not only in body, but in mind, “

regarding the meds I take and my current depression --- yikes! I hardly

consider my situation an example of someone who is an invalid in mind. As a

nurse should realize that the dosage I take of the long acting pain

med is considered a low dosage, and I’ve been working to lower it even more.

And my doctor and I discuss everything and work together as partners toward

my health care. I would hardly characterize our relationship as “a doctor

that just prescribes meds to shut me up.” On the contrary, we regularly talk

for 30 minutes to an hour, and he’s gone to seminars and ordered

publications to help me to have the best quality of life possible. He saw

what a poor quality of life I had, and he talked me into considering daily

pain meds. He presented me with reasons to treat the pain and get my life

back, and told me why long acting pain meds are safest.

This whole matter exemplifies the opinions we confront on a daily basis.

Whether it’s the nurse in the doctor’s office who has no idea what moderate

to severe RA is like and thinks we’re a “lingerer”; or the person in our

congregation who thinks we “just don’t want to be healed” (and I say that as

a devoutly religious Christian); or the person at a dinner party who says

“this supplement cured my friend with RA” and goes on to spend two hours

talking about how if you’d only do this, this, or that you’d be healthy (and

then maybe tries to sell you the aforementioned supplement!); or even

spouses or family members who think we “just need to buck – up”, wishing

they could have the old you back. I did a speech a year ago about the

difficulties involved in having an “invisible illness”, especially in using

a handicapped placard. I finally got one, but I don’t use it often. And

even on the days when every step is a challenge, I hesitate. It’s just one

more wonderful part of having RA!

For good or for bad, our opinions are products of our experiences. If your

experience is that Plaquenil and exercise work, that’s great. And for some

it certainly does do the trick for a period of time, and a small portion

never need anything more. But if it were effective for all, the drug

companies wouldn’t have put hundreds of millions into developing the

biologic drugs. Who would buy them?

You’re a very sweet and compassionate person, Althea. I will not let one

experience determine how I interact with people I care about. And if ’

s RA get’s worse, I hope she won’t hesitate to seek support, either. And

you’re right about wasting energy worrying about something we shouldn’t have

to, and I’m done worrying about it too.

Love and hugs,

Carol

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