Saturday, June 10, 2006

an update on well me....if that is not selfcentered I don't know what is....

I got Novantrone last Friday and let me tell you I don't like it anymore. I used to count the days down on my calendar waiting wiht anticipation and joyful excitement for my every 4 week treatment. Well because it used to help me. Now it just honestly makes things 10x worse. The doctor pretty much (not verbatum) told me that I'm what she hates to call a "lost cause". That is scary she said Tysabri might be my next option. I read that the FDA said it may and most likely be available in July.

To me this is devistatingly terrifying. Come on I am only 26 fucking yrs old. I feel like what is the point...just take the symptom managment drugs and say fuck it nothing else is gonna help. Sorry for the pessimistic attitude.

My gait is horrible..having a hard time walking at all and I have fallen alot 5 times today. Due to the fact of my anmeia it looks like someone beat me because some of the bruising is horrid. Now I have that numbness crap....u know the kind that you can't make people understand how it is and they say oh ok I know how that feels. Fuck that no you don't. This is the first time that is from my hips to my toes. That sucks beause I can't feel my happy place( you know the place I need to feel while making love) and I've never had this before.

So basically I'm doing worse.....but I'm surviving....


Blogger Jaime said...


I am so sorry you are having such a difficult time right now. Please know that you are in my thoughts and prayers. I wish there were something more I could do for you. :( Please hang in there and know that there are a lot of people here who care and support you!

I am praying you get to feeling better real soon. I know Tysabri can be a scary option (seeing how there is still so much unknown) but maybe this will be the drug that works for you. We can always hope! I wish you well. Please take care.


12:08 PM  
Blogger mdmhvonpa said...

Oh crap ... is there anything I can do? I know I'm pretty remote and can only offer second-hand support ...

11:43 AM  
Blogger personallog! said...

Babe...I feel for you as always. One day eh!

Love ya!

5:29 AM  
Blogger Iain Dughlais said...

Hang in there!! :)

10:52 AM  
Blogger Joel Gottlieb said...

sending good chi

PS Reiki: yourself,and if he is willing, your husband


7:28 PM  
Blogger Jaime said...

Hey Amanda~

It's been awhile! I hope that you are starting to feel better and that things are looking up for you. Please take care of yourself.


1:07 PM  

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