About empathy..

[Sangye]

I'm glad you had a good time. My friends laugh at me when I'm driving the grocery store scooters. They think I'm going too fast (as if you could on those things!) and are constantly telling me to be careful, be careful. It's because they only see me staggering around on my feet and they assume I'm just as "off" when I'm behind the wheel. But hey, I haven't busted up a store yet.

[Lola]

I'm having a visual of 2 ladies with very short hair - speed wheeling through the store with their scooters. I gather my courage and grab onto the back of one of the scooters to hitch a ride - careening around corners. What a thrill! The wind ruffling my very thin hair. Whoo Hooo

[Sangye]

LOL-- You just know Jack is gonna come on here and ask if you're on too much pred, Lola. In 3...2..1...

[Jack]

Hi Lola,
Do you think that perhaps..........................

[Palmyra]

I was so angry and full of rage that I couldn't stand people moaning about things, like headaches, stomachaches, even when they were sad when a close person died. I turned into a complete bitch and thought; how can you come to me and moan about such unimportant things when I'm dying? That's exactly what I thought.
What I wanted to say is that I believe it's normal to act (well mostly ;D ) that way when you're newly diagnosed. Who wouldn't be mad when diagnosed with such disease?!
I must say a lot of things that were happening int he past half of a year made me stronger and at some point I simply decided to think positively. Cheers =*

So Katarzena, how did you get over the anger? What was the turning point that made you decide to think differently/positively?

My daughter has been sick for so very long. I think at this particular moment she is simply tired..really sick and tired of being sick. She does not want to go in for blood tests and another Rituxin infusion. Its time, but along with the rtx have come infections and surgeries. She is tired. How can one motivate and provide that needed empathy for a loved one? Living with chronic disease is different than the care free, old normal.
Mom Palmyra

[Sangye]

Palmyra, does your daughter see a therapist? It's been a key element for me being able to deal with Wegs. I've gone weekly since I was dx'ed in 2006.

[Palmyra]

She did at one time. I will encourage her to re-engage (We'll have to find a new one, as her old one past away! Happens to the best of us..)

Good news is she picked up the ball today. She called her local rheumy for an appointment, and requested the proper tests ASAP. I am learning not to be directive, plant a seed, and let her pick it up when she is ready.

And yes, the therapist is a really good idea. Thank you Sangye :-)

[Doug]

Praise God! [I mean that sincerely, not as a provocative statement, LisaMarie.]

[Sangye]

Palmyra, you're welcome. Many times my docs have surprised me by saying I had to do a treatment/drug/dose I wasn't expecting. My habitual tendency to receiving shocking news like that is to say "No." It takes a lot of back and forth discussion, asking questions, making sure it's really necessary, etc... to get me to agree. I'm better at it-- Wegs has taught me a great deal about flexibility-- but I still struggle with it.

[drz]

Palmyra, you're welcome. Many times my docs have surprised me by saying I had to do a treatment/drug/dose I wasn't expecting. My habitual tendency to receiving shocking news like that is to say "No." It takes a lot of back and forth discussion, asking questions, making sure it's really necessary, etc... to get me to agree. I'm better at it-- Wegs has taught me a great deal about flexibility-- but I still struggle with it.

Learning to expect the unexpected or to accept whatever treatment is deemed necessary is certainly one of the main things i have learned from my WG treatment. When I was really sick shortly after diagnosis it was easy then cause I was not in any shape to question or even understand much of my treatment so I had to be a passive object of what they deemed necessary to keep me alive. My family did monitor my treatment and kept track of what they were doing which I appreciated.