I've taken a turn for the worse

BARBARA,

I am so sorry to hear you have been having such a rough time of it. Please know that you are in my thoughts and prayers. I wish you gentle hugs and better days.

Donna

Hi Redrose, Pat, Rosie and Donna:

Thanks for being there for me as always. I can never express to you how much you all mean to me. Rosie I wouldn't say so much that my care is terrible. I'm in a situation with everything I have, my docs just don't know what to do for me. It's a waiting game for me, my oncologist is willing to attempt actively look for a donor for me and attempt the transplant, but only if my Rheumy will go on board with it. That's where I run into trouble, my Rheumy is Mr. Huge Do No Harm to me. My chances of living through a transplant right now is only about 35%. My Rheumy feels that I stand a better chance waiting for my MDS to advance into full blown leukemia and then when I can no longer pull my counts up during an episode then we'll take the chance.

Right now, I usually can manage to pull my labs back up into the acceptable range. Once I've lost that ability then they know I'm nearing the end and it won't matter if I die trying to do the transplant, I'm gonna die anyway. I know that sounds massively harsh but that's were I'm at. I try at every visit with my Rheumy to get him to agree. I'm totally miserable and I don't give a hoot about quantity of live, but I do care about my quality of life. What good is my life if I spend every moment in bed wracked with pain.

Anyway, Nikita just but me a new Enya CD and I'll take some pain meds crawl into my nest and meditate. Thanks for caring about me. I love you all dearly.

Night,
Barbara

((((((( Barbara ))))))) Thanks for explain that . . . I get SO frustrated for you sis!! *sigh* I agree with quality vs quantity . . . so need to apologize . . . I'm there with you! Hot tea for you sis!! Sweet dreams! Blessings!

I wish that your quality of life could be improved now, but I understand your rheumy's reluctance to agree to something that may kill you when it isn't absolutely necessary medically. He is covering his own rear and I understand why. Doesn't mean I agree just that I understand why he is doing this. I still think that he should get his rear on board and stop worrying about a lawsuit.

From what I understand the earlier a transplant is done the greater the chance of it working so why wait until it's do or die? That would lower the chances of sucess. But doctors worry about being sued more than about quality of life for the patient.

Hi Carol, Redrose, Hester, Rosie, and Hippi:

I hope you are all doing well today. Redrose I'm sorry you're feeling so poorly. I'm sure having a young child must make it so much harder, even though we love our babies so much. Carol, I'm glad we finally caught up with each other and yes I'm staying away from the stairs. I sent my Internist an email and explained about my difficulty lifting my left leg up the eight inches up to get into the house.

Hester, I know you're having such a hard time with your lupus, I sincerely wish I could do more for you. All I can offer up is some of my experiences with me and my lupus, and of course, to pray for you. Rosie you're great at supporting everyone here and I don't know what I'd do w/o you. Hippi I see that you've been really busy with your kids. How's your pain doing now and how iis your kids doing? I take my hat off to you, you stay an active Mom for you kids. I know I'm glad that my health was so much simpler when Nikita was a wee one.

Anyway, the reason for my post. I'm in terrible pain tonight and I'd be very grateful if I could get some healing energy/prayers. I spent a lot of time with Nikita this weekend. Even though I've been told to stay out of large crowds, I found myself being pushed in my wheelchair around the mall yesterday. Homecoming is on next Saturday the 25th. Nikita didn't have shoes to wear with her dress. Plus, she needed her dress altered. So I had a serious long day, we left at 12:30 yesterday and were gone until 6:00 pm. When I woke up this morning I was hurting so bad. It's now 7pm and I've had no relief. I don't know why I do this to myself, I guess I'll never learn. I know why I did it, I feel so guilty over my illness I try to please Nikita all the time, even to the point that I may do harm to myself. Anyway, positive engery and prayers would be most welcome.

Love,
Barb

Hi Barb, So sorry you are feeling poorly today. I know how much you want to be able to do things with & for Nikita - it's a real shame you have to pay such a price. I will keep you in mind, as always. Hugs

Many prayers going your way Barb.  Thank you for the words that you sent.  Hope your pain and bad feelings will be relieved soon.

Hester

Hi Barb--
I just wanted to let you know I'm praying for you and sending you good wishes for the happiest times. I will pray for more strength and energy for you, you sound like you need it right now! I know sometimes our older kids keep us busy too! They are so involved, which is good. I'm sure it means alot to have you with Nikita to get her shoes, even though you had to go through the mall. I cringe sometimes and I know people probably think I'm so paranoid. Got in a fight with the minister of the local church about how I get sick everytime I go, and so I don't go so much anymore and he didn't believe me. Just another excuse. Ah well. There are lots of kids in that church. So it doesn't seem to be disease free anywhere. I'm ready to carry lysol around with me. I had this funny image of me in a plastic bubble with lysol sprayed inside going through the mall and realized they had a name for that--huffing. Not too bright. Oh well, they say the mind is the first thing to go. Seemed like a good idea for a few seconds anyway. I really thought I was onto something. Take care and I hope you get a chance to rest and perhaps can get a ramp or lower stairs to get in and out of the house and make sure your legs are okay.