Friday, December 30

Old Years

Happy New Year folks!!!!

Cheers to a safe and prosperous new year

Thursday, December 22


i'm a lil early but...

i hope that santa is good to all of u.  he's been good to me so far, i'll be in my in favorite place - CANNOT WAIT!  if i've been a really good girl this year, i'll come home with a fatter/heavier pocket :-)  

Anyhoo, all of you be safe, be merry, drink plenty sorrel and eat plenty ham...

Wednesday, December 14

And the "Winner" is...

Tysabri!  I'm sticking with Tysabri. 

Yeah there's a possibility of PML, but at least i know that that exists and there is a plan in place to mitigate.  My feeling is that Gilenya is just too new and i'm willing to bet my last dollar that something is going to emerge that they didn't anticipate a few months/years down the road.  I may lose that bet and with any luck i will, but u know how drugs go!  There already have been some things happening too... a few people have died including 1 person who died 24 hrs after taking their first dose - HELLO!  there is still investigation pending into whether the drug had anything to do with it but...

I'm not stupid, i know that there are risks with all drugs and death probably is the extreme case but i'd rather deal with the known risks of Tysabri than the unknown (for now at least) risks of Gilenya.  We (my neuro and I) talked about the 2 therapies and he was also somewhat against my starting Gilenya.  *side bar* Sometimes the way he talks about Tysabri tho, i wonder if he's on the baord of directors or was instrumental in creating the drug. i will continue to endure the games with my veins (got stuck twice yesterday), the MRIs every 3 months (did i ever mention that as far as I can tell, i have NO side effects from the Tysabri?) and the knowledge that i'm at a higher risk for development of a brain infection to stick with "the devil i know".

Monday, December 12

Dreams Suck Sometimes

Friday nite i dreamt i was at a party and dancing up a storm and walking thru the crowd dancing...i was so happy and having such a good time...

and then i woke up!  Steups!!

this is the reality...

Friday, December 9

Christmas Spirit

so i eh really have any spirit this year - i'm just counting down the days to board the plane to Vegas.

  • Some people say their favorite vacation spot is somewhere with white sand, crystal clear water and a drink with an umbrella - man, send me straight to Vegas - love that place.   

Anyhoo, so since we not doing Christmas really, i havent really gotten into it...but what is it about Parang, Soca Parang and traditional Christmas music that does the trick?  I've been listening to it for the past 2-3 days and now i can't wait to make sorrel and rum punch and stock the fridge.  I think that the tree is also going up pretty soon too.


It's Christmas - Baron

Carol of the Bells

Tuesday, December 6

Decisions, Decisions

so next week Tuesday is the appt. with my neuro.  I will have to decide whether i want to stay on Tysabri or not.  As i said before, the one thing i know for sure is that i cannot go back to injecting myself so the only other option i'll consider is the new oral drug, Gilenya.   If i'm to be truly honest here, have i given a whole lot of thought to what i'm going to do?  no!  i really still am not sure...

  • Fear of the unknown is something that i've struggled with in the past and i think that this is a classic example.  Gilenya was approved in the early part of this year (or late last year).  I feel as if it hasn't been on the market long enuf for "them" to really really have a grasp on how it could affect the masses - 2 years from now, "they" will discover that it actually causes patients to grow an extra limb!   
  • Let's not lose sight of the fact that this is an oral drug tho!  WOOHOO!!!

  • Tysabri is supposedly the most aggressive drug on the market and does GREAT things for patients.  Has it done GREAT things for me?  no, not really, altho it is working because there's been no disease progression, so it's done "GOOD" things for me, but i wouldn't say "GREAT"
  • We've finally found a vein that doesn't mind being stuck and giving up the blood, so the procedure is not as dreadful as it used to be
  • let's not lose sight of that higher risk of brain infection tho.   Great!  just friggin great!
Decisions...decisions.  what to do, what to do?  I cyah lie, i think i kinda want to stay on Tysabri but...

Friday, December 2


Last Saturday I was at a party.  I was sitting on my chair, looked around at everybody dancing up a storm, enjoying themselves and said to myself, "Now, why the fcuk are u really here?"

I enjoyed myself and got bouff when i brought it up after, but at the time, i just couldn't help it :-(