Category: Random Thoughts

this post is way overdue.  I’ve been meaning to write about this since the MS walk and never got around to it but now is as good a time as any because something else has come up to which the situations is related.

During the time leading up to the MS walk, i sent out emails for donations to raise money for my team.  Of course, i cyah get vex with anybody if they doh feel like donating – i send out the emails and hope for the best.  well i was talking with a friend (we’ll call him B) a few weeks before the walk and eventually the conversation came around to the walk itself and he said to me that he got the email, but he wasn’t going to donate.  i didn’t ask y (because again; u want to donate? cool…u don’t want to donate?  cool) but he went on to ask me just how much of the money would actually go to me or patients like me and i really couldn’t answer that.  he explained that he preferred to give money to  causes where he could actually “see his money at work” (so to speak) and not to those large societies, corporations etc that might sink the money into research, but the patients see no immediate, real benefit….


Jump to today


the Georgia Caribbean Culture (GCC) committee is going to be having a masquerade ball in my honour in November.  It’s going to be a benefit function to promote MS awareness and part of the proceeds will go to the MS Society of GA***wait, wait, wait…i remembered B and thought to myself (selfishly probably), “why should we give the money to the MS Society?  i would much rather if some of the proceeds go to the MSCA”  The place is my 3rd “Cheers”; i’m there every 4 weeks hanging out for 4 hrs “juicing” (term coined by G2), my neuro is there, they are a non-profit organisation and…i can go on.

I’ll feel much better working with them on this project than the society – this is my “home”…so i went to a meeting with GCC last nite and told them the new plan.  I left a msg for – who i think is the right – person at MSCA to make it happen (push comes to shove, i’ll be there on Friday to juice up).

so!  if u’re in the Atlata area on 11/17 and looking for a something to do, lemme know – it’s for s good cause 🙂

most certainly is a bitch!

Friday nite i made a joke about falls happening in 3s…u’ve heard about the old people saying death occurs in 3s right?  so it was a play on that.  well guess what happened!?!

those MS gods said, “eh heh…u have jokes??  well take dat!!” and I fell TWICE friday nite!!! ah shit!

they were “good” falls – nothing to write home about, but i’m now up to 11.

I went to a restaurant by myself on Sunday.  The place was quiet – not too many people at all but as i was walking out, the host approached me and offered to hold my leftovers, then he said, “i can also hold ur purse if u’d like, i wouldn’t steal it.”  At that point, i figured well hell, if he wants to hold all my stuff, i might as well take advantage and hold on to him to walk out.  He ended up walking me all the way to my car, making sure i was strapped in, closed my door and watched me drive away.  can u say service?  lol  Maybe i have very low expectations of people in general so when someone goes out of their way to help me (even when i’m not struggling (in my book, i guess)) it really kinda blows me away – maybe i should get over that.

so…i fell this morning (wee hours), which means i’m up to 9 for the year.  I won’t get into a whole lot of details but i woke up, got out the bed and …..  it wasn’t bad but it was quite painful – i might have a bruise but it is what it is.

Everything else has been real quite, u know what they say, no news is good news – i’ve not been suffering thru anything weird or new and shit has been stable.  I’ve been really busy at work and me and Dragon have been getting along much better.  i still have to reread everything that it types and correct words here and there but for the most part it’s working out quite well.

so using the Dragon software is getting better only because i’ve been using it only to dictate and not to do EVERYTHING else that it’s supposed to b able to do.  I have to speak “properly” of course, for it to understand.  Some of us come up here and develop what we refer to as a “fresh water yankee accent” but i cyah/refuse to do that shit, so my “work speak” is much slower that my “lime speak” so that everyone (and now Dragon) can understand me.  it’s funny as hell to see what it types when i speak “normal”.  i wish i could give a little demonstration here but alas, it’s only on my work laptop and i can’t use that to create posts anymore.  Yesterday tho, i was typing an email to send to G and S and i thought i was speaking “properly” but u should have seen what it picked up vs. what i actually said.  HAH!!

I’ve never been embarrassed walking with my cane.  i seem to remember feeling a little self conscious the first few times i used it and not using it all the time (remember this story?  LOL) but never embarrassed …but i’ve come to realize that i’d prefer to get out of my car when no-one is around.  it’s not that i feel embarrassed, but sometimes it’s just not an easy, fluid motion – hardly ladylike or graceful (some may argue that they woulda never use those 2 word to describe me anyway, but that’s not the point :-)).  Of course, by the time i get out and start to walk, it’s obvious that something is wrong with me, so maybe u can understand y i got out how i did, i’d just rather no-one is around to see.

I’ve talked about side effects of medication in general and i’ve spoken about PML (1 of the side effects of Tysabri) but a side effect of 1 of the other pills i’m popping is seizures (happy happy joy joy).  The other night i had a weird experience and by the time i’d thought it thru i’d wondered if i should be concerned about a seizure.  Turns out it was an isolated experience and nothing to be alarmed about – whew!  it still had me kinda thinking tho…

alright that’s enuf for today…besides i have a conference call to go and join.  so, allyuh have a GREAT day until next time…

  

so i shoulda know better than to go in on Friday 13th to get my installation eh?  i tell u!!!  the story does end well – i finally got the software.  good thing the branch closes at 6 on Fridays because after having to reboot and restart the installation TWICE, it was finally over at 5:39!  i won’t get into the story of my using it, but suffice it to say that i was so friggin frustrated with it yesterday that i completely shut down (after bout 2 hours) and went and lime instead.  I made a little more progress this morning with it but i still have far to go.

i going and ole talk for a bit…

saturday morning i woke up, got ready to go to the barber and “trotted” (as only i can trot) downstairs…while sitting having my breakfast, it occurred to me that i didn’t have my pills – SHIT!!  so now i have to go BACK up, get them and come BACK down – AGAIN…u have to understand, sometimes when these things happen, they put a damper on my mood because i’m just not sure how i’ll function for the rest of the day after all the extra trekking up and down…Steups!   Turns out that all was well for the day but it dawned on me while coming back down that, “ahhah!  i have some extra pill boxes (from the time that i had to order a new “weekly” pill thingamajig so now i actually have 10 cases because i was recycling 3 prior to ordering) so i can have a extra supply on the 2nd floor in the rare instance (it really does happen very rarely) that i forget the pills upstairs.   I’ve since filled those puppies up and stored them in the kitchen.

Needless to say, i was pleased as punch with myself for having that BRILLIANT idea 🙂  anything to save me from walking unnecessarily deserves a pat on the back