RE: Just thought I'd say hello!

July 31, 2004

ee, Oh, sweetie, we all have whiney days, believe me. Even those of us who have been ill with

this thing for decades. I was diagnosed at 30, but have had trouble with my immune system since

I was 10. I am now 55. So, you see, it is possible to survive many years with this disease, and to make a life for yourself, even when you think it will never happen.

I am the single, adoptive parent of four special needs children. Two are grown and gone, and two are

still at home, ages 12 and 16. Up until 8 years ago, I had a career, a second career, and parented

my kids all at the same time. Talk about over achievers. LOL Now, with all the complications of my

condition, I have slowed down a lot, and can no longer commit to a regular job, I am still an active

parent in my kids' lives. I just have had to adjust how that activity happens, when and how much.

It's a long, hard education to get to where I am, now, and I still have days when I just have to give up

and go to bed. Just got back home from a week's medical incarceration in June, but am taking

advantage of how much better I feel by living life every minute until I get tired, then going to bed,

again.

I played indoor games with my kids when they were little, like beach ball volleyball in their rooms

(beach balls don't break windows), art projects we could do together, day trips to local state parks,

games of Frisbee where I sat under an umbrella and they did the running around. We still have fun,

laughed a lot, but I didn't wear myself out.

On days when I was stuck in bed, we watched films together, read books (the whole Harry Potter

series so far), made seasonal gifts and decorations with the kids sitting all over my bed, etc. You

CAN have a life, it just takes some creative thinking, patience, and constant reassurance to your

family that things will be better on some days than others.

I am glad you found a Rheumy, even if only for a couple of months. At least, you may get a diagnosis out of it, and some decent drug information. For more info, go to our main website and

click on LINKS on the lefthand side of the screen. There you will find many articles on Lupus, its

attendant conditions, how to explain things in plain language to your family and friends, how to ask

for help, and many helpful hints on medications, etc. If one person in the group can't answer a

question, someone else can, or they can tell you where to find the information you are seeking.

Please, though, be very careful about stopping Prednisone cold turkey. Any responsible doctor would

not suggest such a thing. Weaning off of it is the recommended procedure, unless you have not

been on that high dose for more than a few days. And, even then, it is usually done as a "burst" of

medication followed by several days of gradually lowering the dose to nothing. Dropping it all at once, especially after using it for more than a week, can bring on serious complications with your

heart and lungs, as well as other internal organs. Please keep us posted on how things are going with

you, and know that we are here, we care, and we will always listen and respond.

The only thing I would caution you about, other than the medication issue, is that all of our members

and moderators/owners are ill, more or less, just as you are, and if it takes a while to get a response,

don't panic. We will respond as we are able. Again, welcome to the group. Hugs, MM aka: Mike

one of the moderators

July 31, 2004