Today's Ole Talk

so a weird thing has started happening (not MS specific but definitely related to the MS – i think).

all of a sudden, i’ve become somewhat popular – all kinda people talk to me and say hi.  some of my friends have taken to calling me the Godmother of the Stax Mafia – steups.  I keep telling G that i’m the only chick with the cane wherever we go so i might stand out.  if i go somewhere on a regular basis (like where i get my eyebrows done), the people there are going to remember me eventually – they may not know my name, but…

I went to do my toes the other day and honestly, i don’t go to this place very very often, but the greeting i got from one of the chicks there took me by surprise.  I mean it’s really nice to be remembered but i certainly didn’t expect what i got.  in fact, at one point, i said to myself, “wait a min…is she waving at me?”

People who i used to say hi to or nod my head at (or who i din;t even talk to) in our Trini community at are coming up to me and kissing me and talking – it’s cool, but a lil odd still.  it’s really nice how accommodating people can be [not referring to the inner circle here (they do a whole lot for me] – but just people in general wherever i go – sometimes i’m still surprised.

Anyhoo, so last week Monday or Tuesday i bit the bullet and spoke to my manager about installing Voice Activated Software on my laptop.  i couldn’t ignore the fact that sometimes by the end of a day, i can barely type anymore.  I don’t always have days of all typing, but typing is a big part of my job – i spend the entire day in Outlook (that’s for sure) and those days when i work late, my left hand is almost useless.  today, she sent me paperwork to be completed by my doctor to get that ball rolling.  i’m thinking that it’ll be interesting to say the least because a lot of times it’s not till i start typing that i actually know what i’m going to say…i’m sure that using it will take some getting used to.

Alright, that’s it for today – back to your regular scheduled programme.

I Can't do Without…

MY HANDICAPPED DECAL!!!

i got in my first accident that was my fault some Sundays ago.  In my 24 years of driving, it was the first time that i could blame noone but myself.  The right headlight was completely smashed and there were some scratches on the bumper, so i took the car in on Saturday to be fixed.  As a result, i have a rental right now.  Now, whenever i switch cars like that (get a rental, drive in someone else’s car), one of the things that i  always try to remember (ESPECIALLY with the rental) is the handicapped decal!

so on Saturday, G and I cleaned out the car, handicapped decal and all and transferred to the rental.  I drive a Civic Coupe – the smaller the car (within reason), the better for me; we drove off the lot in an Impala – ugh – it just wasn’t as comfortable for either of us (she drives my car way more than i do).  Anyway, so we hung the decal on the rearview mirror, but every time we put it up, it fell back down – it just wasn’t hooking on as it should have, so we just left it on theground of the car; no need to fight it. 

Well we had to park at some time and i pulled into the handicap spot.  I stayed in the car while G got out to get some stuff.  While i was sitting there waiting, it occured to me that i should put the thing up even tho i  was sitting in the car.  Somehow i managed to hook the decal on properly so that it appeared to be a little more stable than it had been earlier, but the windows were down, so that was not helping the cause.  I turned up the passenger side window, but left mine down.  Everything was good until G got back to the car and opened the door…don’t u know that decal went flying out the car!!!  Good thing it was with G because she had to go running behind it to get it.  Can you imagine if it had been me??  somebody else would be reaping my benefits because eh no way, i would have been able to catch it.

I can’t imagine being without it – i really can’t; it just makes so many things so much more convenient for me.  It’s kinda like my cane, i can’t imagine how i managed without it.

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.

Anyhoo…so 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”.

Things that Make U Go "hmmmm'

How is it that i’m so much better on the weekends and when i’m off than during the week? hmmmmm

  • Am i stressed at work?  No, only now and again but not as a rule
  • Do i dislike my job?  No…there are frustrating moments, but in general, i can’t complain one bit
  • Am i under pressure?  Nope…i have deadlines, but i know when they are and work toward them
hmmm…so what the problem is?!?!? (loved Martin Lawrence in National Security)
i don’t spend a whole lot of time thinking/wondering about it – it’s just 1 of those things that i’ll never understand, but 1 of my theories is that my body doesn’t like being jarred awake at some ungodly hour and have to start moving prior to when it’s actually ready to get up.
I do have a slightly different pill schedule.  I take the pill that puts me to sleep in the morning when i don’t have to wake up for work…maybe that’s it?  who the hell knows..if that’s the reason i’ll just have to move right along because there is no way i can take the sleepy pill in the morning during the week – i can’t afford to be knocked out on conference calls and such.

Today i’m off and i’m much better than if i were logged on at my desk.  Maybe it’s because i spend the entire day sitting at my desk working as opposed to being up and moving about every now and again during the day when i’m off?  again, who the hell knows…

i just chalk it up as 1 of those MS unknowns and roll with it…

WHATEVER! 

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