Its the not knowing that is getting to me

July 18, 2008

My RA told me in Feb..its either RA or Lupus...in March, most likely

RA...okay, even though being flared up, I have been ready to

fight...Now, went to my RA on Tuesday, she stated I am now showing more

signs of Lupus...took me off some of my meds and is now giving me

steriod shots every 3-4 weeks...still showing negative in my blood work

and she told me it could remain negative for a number of years..I have

been reading up on both all week..there is really not much of a

difference, not much of difference in treatment, but could have a very

different outcome if it is lupus..What do i expect, every chest

pain ,call the doctor, everytime i get out of breath call the

doctor,every time my lower back hurts freak out that my kidneys are

failing...its the not knowing, she said she is treating me for lupus,

thank God my man is going with me next week to talk to her...how do I

get over the not knowing what to fight ??? Im sorry, I had to get this

out and out of all my family and friends, i know someone out there is

either on this ship with me...or has figured out how to deal with it

in a positive, less stressful manner...Thank you..

July 19, 2008

Hi :

I was sorry to read that you are in such pain, plus, not knowing what

disease you have.

I know nothing about Lupus, so I can't help you there. I do know about RA, and

what works for me might not work for you. You really need to discuss all this

with your Rheumy

at your next appt. I am glad your hubby is going with you.

I think the main thing is to get your pain under control, and your dr. is the

only one who can increase or change your pain meds. When my RA was at its

worst, my Rheumy increased the Pred., increased the MTX., gave me stronger RX

for pain. She added the

Placquenil and Sulfasalazine at that time. She has also given me steroid shots,

which always helps so much. These shots are a different type of steroid, not the

same as Pred.

I have been on Pred. for 5 1/2 years, and never could do without it until now.

I have been decreasing my Pred. very slowly over the past few months. So far

so good.

I just try to get through one day at a time. That is what works for me.

I really had to change things to make my life easier, and less frustrating.

I only do what I can do, and no more. Very hard for me to do this, as I like

things just so, etc. If my home is upside down, I can't stand it. I spend a lot

of my time in my comfy l.r. chair, and I feel good if my house is in order. It

might take me awhile to do this, so I rest a lot. My hubby does all the vac.

for me, plus he does the wash too. I usually fold the clothes, and we both put

them away. It is only the 2 of us.

I try to plan out each day as to what I can do. I had plenty of days that I

couldn't get out of bed, or do anything. If I got my shower in, that was enough

for me. I am thankful for the things I can do.

Yes, living with RA is hard, and my life changed drasticly. It took me a

long time to deal with it, as the pain and stress was killing me, literally. It

just takes so damn long to get out of pain, and get on meds. that help with the

flares.

I pray that you will get some relief very soon, as I know you are suffering

so much. I hope your Rheumy appt. is soon . If not, call and tell them

what you are going through, and that you need to be seen now. This is when you

need your Rheumy the most.

You are not alone, as we all care about you, and want you to be feeling

better. We have all walked in your shoes.

God Bless you , and I hope you will feel better soon.

Hugs.

Barbara

From: kmitch1966 <kmitch1966@...>

Subject: [ ] Its the not knowing that is getting to me

Date: Friday, July 18, 2008, 1:12 PM