Re: Sue C

[Guest guest]

Hi Stacey

I know what you mean about causing damage by not taking meds. and I fear that

I may have done just that, which I probably why I am never free of joint pain

in the better times. But I have had awful experiences with other drugs for

different things that I have been reluctant to try anti-inflamatories.

Obviously I don`t want to spend the rest of my life having to use a

wheelchair on and off so I will give these drugs a go. The right cocktail!

Yes, you are right there. I am expecting a few tummy upsets along the

way!! I am 53 and have a son of 26 who married a Czech girl on 1 June.

The wedding was in the Czech Republic and I could`nt go as I was in the

middle of a flare-up. They rushed me a video through but I am really upset

at not being there. However, I plan to fly out there with them next year

(my first flight!) and visit the church where they married and Irena`s

parents. As they don`t speak any English I am learning Czech which is

keeping my mind very busy indeed! I think that it was the shock of having

to miss the wedding that changed my mind about trying drugs for my RA. Nick

and Irena may go to the Czech Republic to live for a few years in two years

time and I want to be able to visit them about every two months, especially

when they start their family in a couple of years time. So, I have all the

reasons in the world to try and get my RA under control. I think to a

certain extent I gave in to the illness instead of fighting it which I know

now was wrong and damaging.

How long did it take you to find the cocktail that worked for you? Can you

now swim and cycle and walk OK?

Hugs

Sue

[Guest guest]

Hi Sue,

Sorry to hear that you had to miss the wedding. My grandparents came from

that area of the world and have told me stories of the beauty. I wish I had

listened more and picked up the language. It took me about 6 months to get a

good cocktail for me. I do swim, with some limitations. My rheumy still

doesn't want me to bicycle or walk any distances. My knees are the worst and

my hands come in second. My RA has been so nontypical and erratic that it is

keeping us on our toes to try to keep it under control. My rheumy says that

he has never seen anything like it. I tell him that I am going to get him

into the medical journals yet. I have been through a lot of tummy upsets and

bad sides, but it is part of the process and we all have learned from it.

Some days I just don't have the energy to fight and I just write it off as an

RA day and some days I feel better and do too much. Its hard to make the

adjustment. I am basically starting a new life with new rules. Its like

learning to do everything all over only in a different way. Just when I

thought things were settling down a little. I had finalized my divorce and

settled all of that crap, I started a new job (a good one this time) and me

and Wyatt were getting into a good routine. Then ZAP, here comes the RA and

now its time to learn the rules all over again. The past 2 years have been

pretty bad for me but I'm still looking for the rainbow. I try not to let

this disease affect Wyatt too much, and with the help of family, I have been

pretty successful so far. I just have to get used to knowing that there is

no shame in asking for help. Oh well, that's enough of that. Hope you can

find some comfort soon.

Love and Hugs

Stacey in PA

[Guest guest]

Thanks Stacey. I think that when we have a good day we do try to get as

much done as possible which is natural. I even think to myself `maybe the RA

has gone`. It does`nt hurt to hope but you are right in that we have to

learn a new set of living rules and make them as possitive as possible. I

have been married to my second husband for 4 years and he is very good

helping me with the physical things that I find difficult, and as he is

dyslexic I help him with anything that involves writing, measuring etc., I

guess we compliment each other!

One thing that does make me fed up is that because I can`t exercise at the

moment I have put some weight on. I know that it is vanity but I try to

look as nice as I can! If I have a bad hair day I can put on a wig but it

is difficult to hide a spreading behind!! LOL!

I think that when I go to see my doctor on Tuesday I will leave off my pain

drugs so that he can see for himself what I am like now. (Not looking

forward to that!). You can`t really explain pain to someone who does`nt

also have it, can you?

Wyatt sounds a lovely boy. He will most likely grow up with compassion,

which is missing in many of the kids.

Hugs

Sue

[Guest guest]

Thanks Sue, I also believe that Wyatt is a wonderful child and take pride in

accepting the credit. At least something is getting done right. I too have

put on quite a bit of weight. I take 15 mg of Prednisone per day. I just

had back surgery and they added Pred to my IV and then I had a flare and went

on a taper of Pred. It took me a while to figure out why I had gained nearly

30 lbs within a month and a half. When I complained to my PCP, she reminded

me of all these steroids and said " Is it any wonder? " . Now I feel so bloated

and puffy. But I'm hoping that it is only temporary. I keep thinking that

one day we're going to get this under control and I will start exercising and

being more active. Still chasing that rainbow, I guess. I miss the days

when I was an EMT and was on-call for the local ambulance service. I would

get up and run in a moment's notice to jump on the ambulance and run. It was

very exciting for me. Our fire whistle up the road just went off and

reminded me of these times. I still stay close to the emergency services and

the people involved so I'm still there, in a way. But I still wonder what's

happening everytime that siren goes off or I see an ambulance with the lights

and siren running. Just another sacrifice, I guess. I probably wouldn't be

able to keep up with it now anyway, with the other responsibilities that I

have. Its nice to remember, sometimes.

Love and Hugs

Stacey in PA

[Guest guest]

Hi Sue,

My name is Suzanne and I'm from NW Florida. I was diagnosed with RA in late

January. More recently, my rheumy is thinking along the lines of psoriatic

arthritis. Anyway, you said:

> I think that when I go to see my doctor on Tuesday I will leave off my

pain

> drugs so that he can see for himself what I am like now. (Not looking

> forward to that!). You can`t really explain pain to someone who does`nt

> also have it, can you?

On my first appointment with my rheumy I stopped taking all the pain meds I

was taking to control my pain: tylenol, msm, lortab, ativan and vioxx. My

friend, a nurse, was the one who suggested it, as she said, how can he tell

what's wrong with you if you don't show up at his office feeling your worst?

That was a scary thought, cause I knew I was going to feel really really

bad. But she was right, and I had a much better exam than if I had gone in

masking some of my symptoms. He gets very tickled now when I have an

appointment and some of my worst symptoms have either disappeared or

subsided greatly.

Let us know how your appointment goes.

Suzanne