Re: New and having a flare

[Guest guest]

Hi Ali.

 

I am very sorry that you are in such a bad flare right now.  I have had RA for

7 years now, and in a full medicine induce remission for the past two years, so

there is always hope for this.

 

Like you, I had bad flares off and on during those first years.  I could bearly

endure the pain, suffering, swelling, and the tiredness.  It took my Rheummy 5

years to get me at the point I am now.  I never thought I would feel like this

ever again.  There were many, many days, I could not get out of bed or even

function.  My feet were struck the worst with RA, and I mean hit very  hard. 

I could hardly bear to stand on them, let alone walk.  When I was flaring, she

would give me a cortisone shot at her office, then she would increase my Pred.

to 40-60 mg. per day for a week, and then she would decrease it slowly back to

my normal dose.  All that really helped me with the pain and swelling.  I have

never been able to be off Pred. and I have tried many, many times.  Right now I

am on 10mg. a day and will go down to my original dose of 5 mg. a day.  For me,

Pred. is my wonder drug.  i have never had a bad reaction to it or my other RA

meds. 

Large doses of Pred. is what brings all the swelling down, and takes my pain

away during a flare.  I did take pain meds. also during that time.

 

Your Rheumy should see you while you are flaring, so he/she can see how bad it

is and what areas are affected.  They you can get the proper meds, and doses

you need.

 

Once you find your " cocktail " of RA meds. that work well for you, and you get

under control, then you will be in a remission.  No one really knows when that

will be.  Just know, we can return to our lives like before, and can do most

things, but some in a different way.

 

I hope you will feel better soon.  Don't give up as life does get better for us

in time.  Try is rest as much as you can.  I do and my Rheummy insists I lie

down each afternoon, even if I don't sleep I am resting.  Resting is a good

thing.

 

I pray you will be pain free soon.  I am glad you joined our wonderful group. 

You did a good thing for yourself by doing so.

 

Hugs,

 

Barbara

[Guest guest]

Hi Barbara

Thank you so much for your reply. It makes such a difference to hear someone

else's experience. It can be so isolating when you don't know anyone who has any

idea what it is like.

It gives me great hope to hear that you have been able to get to that point. I

think it's important that I try to hold on to the belief that I will get there

but sometimes it's so hard to imagine.

Thanks again

Ali

[Guest guest]

Hi Ali.

 

I am glad I gave you hope as it is what kept me going.  My RA struck me hard

and fast and I thought I had a Brain tumor.  Before I moved here to Florida I

was almost in a wheel chair.  I was scared to death, did not know anyone that

had this, and furthermore, no one I knew knew nothing about it.  Yes, you do

feel isolated and lonely.  To be truthful, no one understood what I was dealing

with daily, the awful pain I was in, and why I could not go off with them.  RA

did change my life, but I have learned to do things other ways, definately rest

when I am tired beyond words.  I finally had to tell all my friends and family,

when I can't go off with you, I want to, but the RA pain at that time was just

awful,  I was swollen in my hands, wrists, and feet, and my feet were so bad, I

could bearly stand on them, let alone walk.  I used to feel so guilty about

saying no to this and saying no to that.  They all looked at me like, " Gee, you

look so

wonderful and are so beautiful, and so healthy, why don't you just come with

us " .  You can't be in all that pain, just take a pain pill and go.  Right. 

Who said anything about a pain pill working?  Not me, as at that time, nothing

helped all that pain!  I sure wished it did!!!  Ali, I have learned in 6

years, I have to be true to myself, do only what I can on an given day, and the

hell with the rest!  I told you before that I do things differently today.  If

I can't finish something I am doing, I just say, well I will do it tomorrow and

not feel guilty because I did not finish. I used to put too much on my

shoulders, and then I would literally  crumble.  With my RA, I had to slow

things down, and put myself first, which I never did ever before. I am a folk

art painter and I would sit at my art table and paint all day.  Now, I can only

sit for so long as I get so stiff and can hardly stand on my feet.  So I paint

some, get up, walk around,

then sit again.  I am just happy if I can do an hour or two.  The very

hardest thing for me was, learning to pace myself.  I did master it and it made

my life better.

 

You have to remember to take care of you, because if you don;t, you will be the

one to suffer, no one else.

 

I wish you many pain free days ahead.  And you will have them.  Once you get

your " COCKTAIL " of RA meds. that work well for you, then you will feel better

and better.  Just aim for that for yourself.  Good luck and take good care of

yourself.

 

Hugs,

 

Barbara

From: astoali <astoali@...>

Subject: [ ] Re: New and having a flare

Date: Tuesday, March 22, 2011, 7:41 AM

 

Hi Barbara

Thank you so much for your reply. It makes such a difference to hear someone

else's experience. It can be so isolating when you don't know anyone who has any

idea what it is like.

It gives me great hope to hear that you have been able to get to that point. I

think it's important that I try to hold on to the belief that I will get there

but sometimes it's so hard to imagine.

Thanks again

Ali