newbie

[Guest guest]

Hi a:

    I am sorry that you are suffering so much.  Your symptons sounded exactly

like mine when I was struck out of the blue.  That was 6 1/2 years ago.  I awoke

one morning, could not get out of bed, and in so much pain I could not believe

it.  My husband helped me to get up and stand.  I could bearly stand and walking

was almost impossible.  My hands were so swollen and bent into a claw like

postion.  I could not dress myself, get off and on the toilet without help.  The

next day I could not feed myself, hold a glass or care for myself.  I called my

PC, and had an appt. the next day.  I was in agony, and in bed all day.  I

thought I had a brain tumor.  I told my husband if the doctor can't find out

what is wrong with me, take me to the Cape Cod Hosp. and I will have the dr. put

in an intervenious bag of steroids.  It was in the mid of winter, hard snow and

very cold.  I was on crutches because I could not walk, and my hands were in so

much pain.

When my dr. walked in he was so shocked to see the state I was in.  He said " Oh

my God Barbara, if I didn't know better, I would say you have R.A. "   What the

heck is that???  I had never heard of it before.  He sent me to an emergency

appt. with a Rheumy.  She drew fuild out of my knee, tested it for gold, there

was none, and she felt I had RA.  She drew my blood for further tests.  She

started me on mega doses of Pred., plus gave me 2 shots.  I went home and she

called me the next day to confrim I had RA.  So that is when RA reared its ugly

head  to me.  She started me immediately on MTX.  The pills made me so sick,

that a few weeks later she taught me to self inject. each week, which I still

do.  I looked up RA on my computer, got so damned scared, I never looked again.

     For the last year, I have been in a total medicine induced remission.  No

swelling, pain, and no flares.  My feet and ankles were hit the hardest, my

wrists, thumbs, and some fingers also.  My hips were hit mildly.  There were

many days I could not get out of bed, and could hardly stand on my feet or

walk.  I used a walker and a cane for stability.

The meds. I take each day are: Sulfasalazine, Placquenil, Pred. ( I have never

been able to get off the Pred.}, and 1 X a week MTX, followed by Leucovorin 12

hrs. later.  I take calcium, vit. D daily, and Actonal 1X a week.

     How long this remission will last, I do not know, but I am very thankful

and grateful for it.

There is always hope for all of us.  My " cocktalil " of meds. finally worked well

for me.  We all search for that right " cocktail " of meds. to get us out of all

this pain and suffering.

     You have done a good thing for yourself by joining our group.  It is the

best thing I have done for myself.  Here you will get support, caring, love,

help, and learn so much about this ugly beast " RA " .  You can vent here, cry,

whine, rant and rave.  We all understand, more than your family and your

friends.  You can say what you want, and just know we care and will help you get

through this.

    I hope you don't have RA, but if you do, it is not the end of the world.  My

life has changed due to it, but I am just happy I can do things, maybe a

different way, but I can still do them.  I rest everyday, as this is what my

Rheumy wants me to do.  I can't shop for hours, but am happy if I can for a few

hours.  At least I can do a little bit each time.  The hardest thing for me was

to learn to pace myself.  This was difficult for me as I did so much each day. 

I learned the hard way.  If I pushed myself, I would spend the next 3 days

trying to recover from it, and hardly able tro get out of bed.  I did finally

come to terms with it all.

It took a long time for my friends to finally get it.  The famous words, " You

look fine, healthy, and so beautiful.  It can't be as bad as you say.  Yes, it

is bad, it is horrible.  I quit appologizing because I could not go and go.  I

felt so guilty for not going off to lunch, movies, the beach etc.  Now, I do

what I can when I can, and if not, I just stay home and care for myself. 

Period.......

      Wishing you many pain free days ahead.  Take care of yourself, and rest as

much as you can.  Do not feel bad about it.  Your body is fighting the hardest

battle of its life.  Resting does help.  I hope you get a great Rheumy, who will

help you feel better and try to get you out of your pain and suffering.  If you

do not like your Rheumy, search and find the best one for you.  I love my

Rheumy, and she is the best dr. and takes such good care of me.  You owe it to

yourself to have a wonderful dr.

  

Hugs,

 

Barbara