Re: Latest CRP level

[Guest guest]

,

I just got back my latest blood work and found that my CRP level has risen

again. It's now at 3.86. What should I do? I go to Stanford in the morning

and feel so hopeless about all of this. I'm taking more and more

medications, enough to make me a toxic waste dump and yet this level

continues to rise. When is it too high? I know you said it was getting up

there. Even to the point of stroke level. Do you have any advice?

I started a water class today. I just didn't realixe how weak I had become.

It was very painful. But, I feel like I should keep trying. The ladies in

the class couldn't believe that I didn't carry my cane as a precausion.

Also, they couldn't believe that I worked and didn't have a diabled plackard

for my car. Do most people have a disabled plackard? Do most people carry a

cane in case they fall?

Amy

[Guest guest]

Amy,

I started using a cane about 2 years ago. The only thing that kept me

from not getting one sooner was pride. I kept telling myself the reason

I would trip going up the stairs and have to take one step at a time

coming down the stairs was that I was clumsy and afraid I might fall. I

wouldn't admit to myself that my legs were weak and my knees didn't bend

like they should. My husband was afraid to let me go anywhere by

myself. He always held onto my arm. I finally gave in (I told myself I

was making my husband happy). Now, I never go anywhere without it. I

finally got it through my head that I needed it.

And as for the parking plaquard, I have had one for 7 years. I use it

when I am having really, really bad days or I know I am going to have a

lot of walking to do wherever I am going (mostly shopping) and I don't

need those extra steps to walk back to the car. You can pick up the

form from your DMV and have your Dr. fill it out and you can send it

back or take it back to the DMV and you get the plaquard right on the

spot. It is good for 2 years. I just renewed mine and it was free this

time. It usually costs $5 for 2 years. The good part about renewal is

that you don't have to have your Dr. fill out the form everytime, it is

automatically renewed, at least in CA it is. You might want to talk to

your Dr. about getting one and see what he has to say about it.

Angera

[Guest guest]

Dear Amy,

First of all, the stroke business - it was just announced that a study had

shown that elevated CRPs were an indicator for

increased risk of stroke in old age - you are okay in that department!

You should definitely get a cane - most people like us get a nice looking one

that we don't feel funny about using - in fact I have two in case I misplace

one. My doctor also gave me a prescription for a reacher/grabber tool and it

is fantastic for reaching stuff when you are too tired or in too much pain to

get up.

Your state will have a form from DMV for a handicap permit. In Connecticut

the form requires a doctors signature. Mine is for six years and I think

cost $2. It is blue and white and hangs from the rear view mirror. You can

use it in any state!!!

Remind me again which DMARD you are on and at what dose so I can give you

better advice on what to ask at Stanford.

[Guest guest]

Angera,

I went to Satnford yesterday and they insisted that I get a cane and the

placard. I have some pride stuff going on too! I'll get over it I'm sure.

It's just that I have this feeling that if it's a cane today, is a walker

tomorrow? How about a wheelchair? I know it's a bit dramatic, but it's

where I'm at right now. Thanks for your suport!

Amy

[Guest guest]

,

Thanks for the advice and the stroke information update. I did get a bit

nervous. I went to Stanford yesterday and they upped my Arava to 20mg from

10mg. Also, they put me back on Prednisone and kept my MTX at 20mg for now

and I'm still taking 400mg of Celebrex. They said my joints were freezing up.

So, I'm going to do hydrotherapy 3-5 times a week and see what happens.

When I went for the first time the other day, I felt so weak. I used to be

so strong, I think it's the little stuff like that that gets to be tough.

They asked me to get a four legged cane for extra support. What an ugly

thing it is! But I also got a really pretty purple flowered cane that folds

up into my purse. I think I can live with the pretty purple one much better.

Amy

[Guest guest]

> I went to Satnford yesterday and they insisted that I get a cane and the

> placard. I have some pride stuff going on too! I'll get over it I'm

sure.

Amy,

I had the same feelings when I was suffering from fibromyalgia. But it

didn't take lvery ong to get over it once I actually got the cane, although

once in a while I still did have twinges of self-consiuosness. But, it made

me feel foolish when I thought back about how I had felt before I got it.

Rick

[Guest guest]

Amy,

You are definately not being dramatic. It is tough dealing with this

terrible disease.

We took our 4 year old grandson to Disneyland a few weeks ago. For

weeks before we went, I worried about how I was going to spoil everyones

day by being slow, having to sit and rest frequently. I even told them

to go without me and take lots of pictures. My son and his wife and my

husband would not hear of it. They said we were a family and we will

deal with it as a family. When we got there they rented one of those 4

wheel scooters for me (they all had this planned before we got there and

did not tell me). I was mortified and made a scene that I WILL NOT RIDE

IN THAT!!! They insisted, and to make a long story short, I had the

time of my life and was not a burden (I say that, not my family) on

anyone.

In your own time, you will come to grips with how this disease affects

you. It does alter your life, but with plenty of support you will come

through it. And this group is a great place for support. Just take one

step at a time.

Hope you have a wonderful pain free day.

Angera