Re: newly diagnosed Phyllis (long post)

[Guest guest]

Hi Phyllis:

We are here for you - you have found the right place to be able to

come and vent, ask questions, be heard, discuss doctors, treatments,

medications, and be truly understood by others in your same situation.

I was dx with RA 8 years ago, and 2 years ago with OA and

fibromyalgia. It was hard for my family to accept that I was ill - I

still looked like the old me. There is always denial in these types

of illnesses, in patient and loved ones and friends, they don't want

you to have this disease because it is a scary thing and they are

frightened for you because they care about you. It's understandable.

I used to email my husband articles and such regarding RA (and then

OA and Fibro as well eventually) because I have found that he is more

able to absorb the information better that way, rather than having me

just talk on the issue, and see his eyes glaze over lol. My kids

were 12 and 15 and eager to learn with me what this RA was. They

accepted my naps better than my husband, and would help with little

things like loading and unloading the dishes, dusting, doing their

own laundry. It all helped. Sometimes they see you need help,

sometimes you have to ask, learn to ask, okay?

My mom died 9 years ago of colon cancer - probably my trigger for

this disease, as it totally through the whole family into tourmoil as

she had been our centerpiece, our rock, and after she died we all

just kind of fell apart. Now, I do have a much better relationship

with my younger brother who lives in Flaggstaff, AZ and is working on

his nursing degree, after getting himelf clean and sober. My middle

brother is homeless, on the street, and still drinking. My dad and I

never had a good relationship, in fact the relationship with the kids

is all strained with dad. Mark and I are trying to hold things

together, and get together for Christmas, but it's expensive for him

to fly here, and we cannot help him like we once did. He truly

understands what I am going through, having studied the nurses

courses on RA and Fibro, and he has seen what I go through on a daily

basis. I think he will make an awesome nurse becuase of it.

I there anyway to bring your hubby into a doctor appointment with

you, or have your doctor write something up for you husband to read

regarding your diagnosis? I am happy to see you are on anti-

depressants, they have helpeed me to cope with all of this, and that

you do see a therapist. That is great adjunctive therapy and you can

let out your emotions with him, and get the support your husband is

not able to give through him, and through us. You can come here

anytime to vent, to tell of good days, bad days, funny stories, pets,

friends, families, medication ups and downs, doctors, pretty much

everything.

You are no longer alone in this battle - you have us. Return to us

and let us know if your husband is able to go the to the doctor's

with you, and if information you send him by email is helpful. What

medications are you taking? I take Enbrel, Methotrexate, Mobic for

my RA, Lyrica, Skelaxin, Effexor XR, Zanaflex, and Ambien CR for my

fibro, and Ultram for pain of both. Lots of meds, but they keep me

going. I think between all of us in the group, we have to have been

on most all of the medications offered for RA or lupus, and can give

you personal stories or success or problems.

So, keep coming back - give your family time - I know you feel very

abandoned right now, and that is doubly hard when you are fatigued

and in pain, but I am sure that they will slowly begin to understand

what you go through

Take care - Kathe in CA

>

> Was diagnosed with RA today and although I've virtually screamed at

> the doctor to test me for Lupus, it wasnt done till today. I was

> crying but I'm not sure if it was because I was in such pain or that

> FINALLY the doctor was listening to me. What now? I've complained so

> much to my daughters and husband they all pass me off as a

> hypocondriac. Tonight I've told my husband " see...I DO HURT! " and I

> was ignored again. I now face this alone. How is that done? I see a

> therapist once a week and am on anti depression drugs but I still am

> not getting the support from my family that I need. I live in

> Louisiana where there is NO support group for lupus sufferers

(thanks

> Katrina)....Its been one hell of a year. Phyllis

>