Re: Thank yous

[Guest guest]

I’ll add my thank you’s too.

Although I do not suffer from this monster, I see what it does to my son. My

beautiful, kind, compassionate son, who does not complain (except to mom when

it gets too much) and accepts this disease as a part of who he is. I thank all

of you for helping me so much over these years to learn, to understand and to

help him.

Now my husband too has some form of this

and is trying to make the same decision you just made – does he start the

pred again or not? Because of this list I have learned that we are not alone in

our struggles. I have made so many friends from around the world that I truly care

for. I would like to give all of you a giant hug and let you know that you have

helped me in some way.

So I add my thank you to Donna’s and

I hope that you and your loved ones have an easier day dealing with this

disease. Michele ( 20, spondy)

From:

[mailto: ] On Behalf Of ajaoky@...

Sent: Thursday, April 17, 2008

9:30 AM

Subject: thank yous

JRA

....after 39 years.....

I woke up yesterday with a decision that HAD to be made, it could not be

delayed anymore. Funny thing is, it was not a huge decision, really. It was

just a decision. Do I take my dose pack of methylprednisolone or do I not? I

have been in so much pain, unable to do the simplest of tasks without putting

frown lines on my aging face. Stepping out of my van only to hold onto the door

panel for 3-4 minutes before I could take the few steps to my my back porch and

pull myself up the few steps I have. A few mornings ago my son woke up choking

and I cried because it took all I had to get to him and make sure he was ok. He

was, I wasn't. My life does not suck, this disease does!

Recently, I spoke to a parent whose 14 year old daughter was not in agreement

to the very same decision I was about to make,so it makes me wonder , does it

ever stop? But I suppose I know the answer. It doesnt stop.

Life with JRA is never easy. I have often said its not all bad. As a result I

have met the most wondeful people. However, given the choice I know none of us

would choose this disease for our children or ourselves. The pain, the lack of

mobility, the doctors, hospitals, medications and therapy. Come on, none of

this fun! Heck just trying to decide what doc to call when something is

bothering you is a difficult decision.

I am so mad at this monster and given the opportuntiy would take a weapon of

mass destruction and destroy it however, this is not an option. It is what it

is and we have to live with it. I made my decision and despite knowing its

awful side effects I chose to start the dose pack. I woke up better and look I

can type a long , boring letter to tell you guys..... I am so glad to know I

have you guys and that you all have each other and I know together we can make

a difference.

hugs and hangin tight!

Donna

**************

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[Guest guest]

Hi Donna,

I wonder about the options and choices taken as well. Each day something pops up in which I have to make I hope the right choice and given the options in which we have at our own choices. I wonder about the future of what is being put in the body.

Just to make it each day those who live with JA and those who care for those with JA. I am just a Mom here that understands this part of the Disease. I always gave my opinion on thing's which dealt with her Health. Sometimes there's no choice in this matter. Sometimes there is.

Choices are the given. Pain is not. Would you want to give your pain away? Or wish it on some enemy?

trys to express what she is feeling. Sometimes it is undescribable she tells me. Then other times she tells me or shows me. She also uses the Mom you just do not understand this Disease like I do. This is when I tell her she needs to email or call Donna lololol.

Your choice to take the Pack was good. I have seen this work good with my sister. has not taken this yet but she will be if needed. She trys her best to avoid pills. It's amazing how this disease has such a issue with Side effects to getting pain relief. Once you try something which helps BAMM side effects follow. When this type of issue comes here. I again sit down and tell her it is a choice in which she can only make. I can get the medication for her but if she does not take it I have no option.

Donna, Your so much help with ..... Your choice has always been the best. Your opinion is greatly appreciated in this Family. :-).

My choice with Meds is try it if it does not work then do not take it again. Prednisone is a good drug for short periods. Long term is where it has it's issues. does take the Prednisone when needed just has not taken the Pack yet.

This time the medication helped you. Which helped you girlfriend. Helped you be able to move better.

Your one in a million. So glad to be on your side.

RobbinNeed a new ride? Check out the largest site for U.S. used car listings at AOL Autos.