Re: Re: How debilitated/Deformed Have you Become with RA

[Guest guest]

tHANK YOU jANET--i HAVE ALOT TO LEARN.

EL

You don't stop laughing because you grow old,

You grow old because you stop laughing.

[Guest guest]

Hi OKD.

     Gee, I was so sorry to read about your stress fracture.  RA is always

full of surprises for us.

I know it is easy to get discouraged because none of us truly knows what is in

store for us.  Well, I am going on 7 years now with it.  I really do not think

of the future with RA.  I just go day by day.  I am grateful that I have been

in this remission now for over 1  1/2 years.  I don't know how long it will

last.  I am in much better shape since the day I was diagnosed with it.  It

hit me hard and fast.  I thought my life was over.  Well I am still here!!!!!

 

    I know you are young and fearful of the future.  I can't blame you for

that.  All we can do is to try and slow down this ugly beast.  Yes, the RA

meds. are very harsh, but so necessary for us.

I never think about what they can cause us.  I am just happy to be alive and

doing so much better.  I wish everyone here could feel like me.  It really

tears me apart when I read what some of our friends here are dealing with.

 

    I went to the foot surgeon yesterday to have the final check on my

incision and it has healed wonderfully.  But, my feet are another problem. 

They hurt so damn bad from the toes to the heels on the bottom of both feet. 

It is not the RA.  He did some nerve testing, and I will go next week to have

both feet nerve tested.  I feel it is not good but will try to find out what

the issues are with my feet.  My Rheumy tried me on Gabapentin, and the third

day my eyes were swollen shut.  So much for that medicine.  I just pray that

there is something that can be done for me.  I just hate to stand on them and

hate walking worse.

 

     I think of you a lot OKD.  I sure hope things get better for you.  I

do care about you and what you are going through.  Wishing you much better days

ahead.  Does the wonderful weather in California agree with you?

 

Hugs,

 

Barbara

From: OKD <Cofade_2000@...>

Subject: [ ] Re: How debilitated/Deformed Have you Become with RA

Date: Saturday, September 18, 2010, 2:41 PM

 

i read this thread and it made me think - alot. i worry about myself, somedays i

am very aware of every joint in my body, because of the inflammation, every with

the drugs, everything hurts, and i never know from day to day how i will feel.

its daunting, and even though i am being treated with what they call agressive

treatments, i often wonder about this 10 yr mark doctors will give you " most

people within 10 years become disabled " blah blah.

For example, I was minding my own biz, my metatarsals were hurting on my right

foot, and i was ignoring but i decided to go to the doctor and POOF I have a

stress fracture, i didnt even do anything to myself, i didnt hit it, i didnt

step wrong and look.

who the heck knows what will happen tomorrow? I am not living in fear for sure,

but the uncertainty get you once in a while....

OKD

[Guest guest]

Hi .

  

     I really enjoyed reading your posting today.  It really is wonderful

how good you are doing with your RA, and not having any pain.  Your life is

back and you are doing great.

 

    It really is nice for everyone here to see that there is light at the end

of the tunnel.  It gives so much hope to all.

 

    I too have been in a medicine induced remission.  I am doing very well

so far.  My cocktail of meds. are certainly doing what they were designed

for.  I am very grateful for my life back.

 

   I hope your life of feeling so good lasts a long time.  Nice of you to

share such wonderful news with all of us.

 

    Have a great day, and thanks again.

 

Hugs,

 

Barbara 

From: <ncwalker@...>

Subject: [ ] Re: How debilitated/Deformed Have you Become with RA

Date: Sunday, September 19, 2010, 9:16 PM

 

Sorry to hear you aren't feeling well.  I do know how painful RA can be.   I

have past the 20 year mark with RA.   I had nodules on my elbows that made it

look like I have 3 elbows when I was diagnosed with RA.  To my surprise they

went away.    I had just forgotten about them because I wore long sleeve

blouses.   I was going to show them to my friend I had not seen in a long time

and they were gone.  Imagine they had disappeared and I hadn't noticed.  I

guess I was still half asleep when I took my shower in the mornings.   I

remember taking an elevator instead of going down 3 step because my knees hurt

so bad.   I had my hair permed curly because I had hard time raising my

arms.  Moved dishes to lower shelves, anything to make it easier.  

Methrotrexate was the drug that keep me functional.   I thought of retiring

early one time and asked the rheumy about it and he said most people did better

to keep working.   I suspose that is

true unless you have a real physical job.   Somewhere around 2002-2004 my pain

went away.  I had ask rheumy about discontinuing Methrotrexate but he said the

pain would return.

After several infections I stopped the methrotrexate last Nov ,    So far I'm

good, I am seeing a doctor of osteopath, taking lots of supplements, nutrition

shots, and on low dose naltrexone since May of this year.     I am finally

beginning to have some energy.   This is longer than I meant for it to be, but

wanted you to know there can be better days.  I keep following the group, just

in case I have problems again.    I forgot to mention that I used a hot tub

every moring and night when I was really bad.   The joints don't hurt in the

water ( temp 102) and are much more flexible.  Wishig everyone pain free days,

[Guest guest]

OKD--

 

I guess the secret is to live each day in the moment. That way, you don't miss

the good stuff while you are worrying about the bad. I am not trying to sound

flippant or dismissive- it's what we are ALL going through. I have been through

pure hell for the past week and finally decided that I am not letting this

bloody disease take everything from me. I am trying to concentrate on every

single good thing I can.

 

 Heaven knows there is enough bad to spread out for miles. The good stuff is

rare and precious and shouldn't be taken for granted. Like this group- it's good

stuff. People reaching out to each other. Like  constantly researching and

finding articles for information and hope and Betty with her sweetness to

everyone to tell them they aren't alone. OKD- YOU are not alone. We get it. It's

OK to be afraid. But you can only stay in that for so long. I am not telling you

that you should feel better after reading this, but that I hope you do. You have

a support system.

 

Big, gentle hugs-- Chris

[Guest guest]

Hi OKD.

 

     I thought you lived in sunny California.  You can dream about it

though.........You have such a good attitude about life and your RA.  Good luck

in all your searches.

 

    I hope you find what you are searching for.  Take care of yourself and

rest when you can.

 

Hugs,

 

Barbara

From: OKD <Cofade_2000@...>

Subject: [ ] Re: How debilitated/Deformed Have you Become with RA

Date: Tuesday, September 21, 2010, 9:49 AM

 

Thanks Chris/Barbara for your lovely replies.

You are 100% right I refuse to live in fear. This definitely is something

you have to take one day at a time.

I am constantly searching for alternative remedies in food, herbs, because I

know its out there.

PS - Barbara I live in NYC, but I wished it was sunny California - L0L:))

Thanks all,

OKD