Category: Random Thoughts

• 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!

I enjoyed myself and got bouff when i brought it up after, but at the time, i just couldn’t help it 🙁

• we going to Carnival somewhere; we hadda know bandleaders or DJs so that i can get a spot on d truck – I cyah be on the road
• we going to fete somewhere, we either walking with a chair or (again) know the promoters so that a chair is organised for me in the party
• i want to buy a shoe, i have to be mindful of the heel (i almost need a cobbler to make my shoe special, because who knows if i’ll ever find what i need)
• i have to go anywhere, i need to be mindful of parking – how long is the walk from the car to the door blah blah blah

and the list can go on…Now, don’t get me wrong i am grateful that we know promoters/band leaders/djs etc, because it allows me to continue doing the things that i like and enjoy life as normal and they all know the situation, so nobody gives us a hard time.  On the flip side there are perks…i sail thru the security line at the airport, board the plane before everybody else, have prime parking but that’s beside the point for this post.

the tickets to Vegas are bought!  woohoo!!!  but of course, i have to think about being in Vegas (a walking city) in my condition (i almost didn’t want to go at first).  So…

• I had to call the hotel to see if they have rooms with walk in showers – i discovered (not the hard way – thank God) that i would prefer NOT to climb into a tub to take a shower.  That never occurred to me until recently because i don’t have a tub in my bathroom; i have a walk in shower.
• the last casino i went to had scooters for rent, so i figured Vegas MUST also have them.  but then i started thinking…if i’m there for a few days, i don’t want to have to rent it out daily (it’ll be too costly!) – what if there is a long term kinda thing available?  and wouldn’t u know it? there is – so i’ll be good for my entire stay