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  • alisonp
23 Jan 2010 18:07
Replied by alisonp on topic Timothy's count 22k
Hi Donna,

I thought that your post about Tim not taking the promacta was really funny - only because I can so imagine my 16 year old doing that too! Its quite reassuring to know that he isn't alone. Teenagers are a law unto themselves aren't they? It will have been a relief to your doctor to know why it was having so little effect.

Your dream was really interesting too. I always think that when you are in that dreaming phase you can process information better so you get better answers. Unfortunately I dream about totally random things so it doesn't work for me!

I hope Tim is continuing to be ok with his count. We are going back to the hospital on Monday to get Dougie another count, so I am keeping my fingers crossed


P.S. I am not liking this new format for the discussion board - it seems much slower to go through posts. The photo uploading is interesting though - you look so young!
  • lucidawn
23 Jan 2010 18:44
Replied by lucidawn on topic Timothy's count 22k
Thanks for the encouragement. I always think my kids are some kind of wild freaks from the Amazon or Jupiter or something. Being a single mom, I think I tend to double up my guilt and think everything is my fault and "what lovely monsters I've raised, lol." So, he's not being a freak, that's nice to hear. I know it, but its nice to hear others says, "he's a normal teenager". The hemonc was definitely relieved, I think, but irritated that Tim would not give the promacta a chance to work. He did keep it low key, which is essential with Tim, who bulks and will completely rebel if directly confronted in a negative manner. He handled it well (the hemonc). I figured they have dealt with this before, so I kept it low key and called them the night before to give them a heads up.

As far as the forum, it does take more time to sort through posts, that was one of the first negative things I saw. But I think some of it is that we are used to being able to see all the topics at once and them loading quickly. Hopefully as we get used to it it won't be so difficult to deal with. I do like that the posts come to my email, so if I dno't want to log in, I can just read the thread replies on my email. Kind of a nice feature.

Good luck with Dougie and his cbc. I hope he continues to be on the rise. Even short dips don't mean he isn't on the rise. It happens.
  • lucidawn
23 Jan 2010 18:50
Replied by lucidawn on topic Steve a/k/a Gort (moved from old Forum)
Very sad and scary news. Prayers. :(
  • Sandi
23 Jan 2010 19:22
Replied by Sandi on topic Okay, what is karma and how do I get some
KARMA is gone.
  • jgleepa
23 Jan 2010 19:42
Replied by jgleepa on topic Whats going to happen to the old forum
How do I get back to the old forum? I want to take my profile info that I had on there and switch it to this one. I had alot saved on there that I don't have written down at home. YIKES!!
  • Sandi
23 Jan 2010 20:07
Replied by Sandi on topic Whats going to happen to the old forum
Did you figure it out?
  • Sandi
23 Jan 2010 20:08
Usernames was created by Sandi
If you change your username, please add the old one to your signature so we all know who you are.
  • Caroline109
23 Jan 2010 22:34
SIgnature??? was created by Caroline109
I saw that we'd be able to have signatures with the new boards. Can you advise as to where to set that up or can we not do that yet?
  • tigereyes
23 Jan 2010 23:11
Replied by tigereyes on topic Rhema Appt
I have only been dx with ITP and connective tissue disease--which in itself is a catch all for what seems to me when they cannot come up with a definite dx. I deal with joint pain, this rash, stomach issues, swelling in my feet/ankles, fatigue...these dont all happen at the same time or even for a long time. But it seems that I have somethng else going on other then just my low platlets. I cant seem to stablize like I have in the past which is what is sending me off to other mds. Im usually a kinda go with the flow girl and well Ive come to the realization that I NEED to take charge of my medical care. I cant keep going on with well maybe...or its ok today.

I think the most important thing is to be get all the information that you can and present it to your doctors. You cannot make an informed decision on your treatments until you know what treatments are available to you--along with the treatments you have to understand the side effects and if the benefits outweigh the risks.
  • Sandi
24 Jan 2010 00:33
Replied by Sandi on topic SIgnature???
Go to Profile, Edit, Contact info. You can put it at the bottom where it says "About Me".
  • Crystal
24 Jan 2010 01:24
Replied by Crystal on topic Promacta
Hello MaryEllen....I been dealing with ITP for almost a year and my hemo have placed me on IVG, Pred, Rituxan, NPlate and now I am on Promacta. It has been working for me fine. However I am very fearful of its side effecs but I pray each time I take it. I have noticed my vision has changed and that is a side effect. But my count has remained over 160,000 and they also went up over 200,000. I been on Promacta for about three months.
  • CindyL
24 Jan 2010 06:48
Replied by CindyL on topic Steve a/k/a Gort (moved from old Forum)
Sandi, are you able to move all the replies that are on the old forum to here, or should we re-post on this new site? Just curious.
  • CindyL
24 Jan 2010 06:53
Replied by CindyL on topic Okay, what is karma and how do I get some
Yea! I didn't like it either. :P
  • CindyL
24 Jan 2010 06:53
Replied by CindyL on topic Okay, what is karma and how do I get some
Yea! I didn't like it either. :P
  • snowgoose
24 Jan 2010 06:57
Replied by snowgoose on topic Okay, what is karma and how do I get some
I am really glad that the " karma " option has been removed. It was not appropriate. Thanks Sandi :)
Displaying 121 - 135 out of 72177 results.