Donations

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 :-)

Karma

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.

People Never Cease to Amaze

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.

Ole Talk Thursday

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...

  

Friday 13th

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

Jokes, Jokes and more Jokes

so i've mentioned before that there are times that if i don't laugh i'll cry.  I've also mentioned before that laughing at myself is one of the best ways (that i know how) to deal with some of the situations i find myself in.  Well that also holds true for the people around me too.  Now, as Trinis, we can be crude, insensitive, so non-PC and i can go on...BUT we are also warm, fun loving, the best people to have in ur corner when things go awry.  I was with an American once; it was his first time around Trinidadians and at some point in the relationship he said, "you all are nice people u know, you're just not nice to each other" and sometimes when i hear some of the things we say to each other, no wonder the fella said that.  LOL...anyhoo, thought i'd share 2 jokes with you here.

so, we're on the boat and for whatever reason the water got rough (u have to understand, we were on a bloody lake - ain't no reason for the water to get rough).  I was walking with someone at the time (good thing) and the conversation went like this:

Me: "what the!?!?  wha's all this???  good thing i doh get sea sick normally"

Mello: "sea sick? i cyah believe u could get sea sick...the way you does walk all the time, u eh supposed to get sea sick!"

buh wha d???  someone else may have gotten offended because clearly he was making fun of how i walk, but we laughed and went on with the day...

Here's a conversation that took place between Ari and G:

G: I left my purse next to Stacey downstairs.  If you're getting up, make sure and take it with u

Ari: OK...what about if Stacey gets up?
G:  LOL!!!  LMAO!!! ROFLMAO!!!! (she never actually said anything, she only busted out laughing like a mad woman at the thought of my getting up - granted it was on the boat as well and i had some challenges but...)

I'm glad that i can provide them with some comic relief :-).  Maybe it's the same for everyone else around me too...if they don't laugh, they'll cry, so hell we ALL laughing and laughing hard!

Friday

Going back to a bank location on Friday.  Should we take bets on the success of this download???  by the way, did i mention that it took 5hrs to install and all of 5 mins (if so much) to uninstall???

Steups!!

a Lil Feel Up - LOL!!

it's kinda funny (now).  the first few times it happened, i was appalled but when i realized that it will happen regardless, me cyah bother be concerned anymore...what can i do?

Almost everyone i "hold on to" to walk with gets a lil feel up of my breastesess - LOL!  so how it works is that i hook my left arm into theirs and walk - well at some point, it almost always happens without fail, that i end up rubbing my boobies against them.  It's to the point now that it's a running joke between KI and me and he'll say something along the lines of, "i think is time for a lil feel up today".

Like i said, the 1st few times it happened, i felt a lil shame/appalled even, but when i realized that it will most probably happen, i just let it go.  I often wonder tho if other people feel bad when it happens.  Maybe the men don't mind - they might feel a little ahow at first but eventually i'm sure they don't mind at all :-)  the women?  i dunno - maybe they feel weird and hope that it doesn't happen again?

so!  if you read this blog and u're ever in a position to walk me anywhere, rest assured that it'll probably happen and it's no big deal!

i mean, wha's a lil feel up between friends :-)

Nothing is Ever Easy

A few posts ago, i mentioned the Voice Recognition Software.  I spoke to my manger to see what kinda approval i'd need for it to be installed on my laptop.  My intentions were to buy it and do whatever i had to do to get it installed.  Lo and behold, after we did the research, we found out that it's one of the approved applications under the disabilities act for associates, so WOOHOO!!!  i dint have to pay for a thing.  all we had to do was get my doctor to fill out some paper work, wait for me to be assigned a case manager and BOOM!, everything would fall into place.

2 weeks later, the case manager contacted me and asked for my computer name so that Dragon Naturally Speaking software could be pushed to my laptop - things were moving along smoothly.  The next person who contacted me was the tech.  He asked me if i worked from home or if i was in an office.  when i told him that i'm at home, he said that he would try but chances were that i would have to connect directly to the network in a bank location...uh oh...okay, i can make that work.  Now, you have to understand, the last time i got dressed and went to an office was sometime back in 2009 (maybe 2010) i think.  LOL - do i even have clothes to wear to an office???  LOL

Because of my limitations, it's not easy for me to go anywhere willy nilly...i have to make sure the walk isnt' too long, there is connectivity (the last time 1 of my teammates went into an office, she had to turn right around and go back home because there weren't any cubes from which she could work).  Everything has to be just right and be in order the 1st time that i get there (my old office closed down so i really don't have anywhere to go that is a sure thing), I just can't afford for shit to happen so i figured if i go to a branch, i shouldn't have any problems - they have to be in working order!  (for those of you who might be wondering, i work at a bank).

So last week thursday nite, i dig thru my closet and find something to wear the next day.  I woke up extra early Friday morning, got dressed and drove to the Emory banking center (i used to work there so i know the lay of the land.  of course the office that they put me in couldn't be further from the bathroom, but hey!), plugged in and contacted the tech.  He started the installation at 10AM that morning.  At 3:00PM, i got the company license to register and activate my newly installed Dragon Software and got an error message that i was entering the wrong thing.  okay, no problem, i'll copy and paste this time, so no room for error.  what???  it's wrong again?  what the?!?!  i contacted my case manager.  she said, "do u have Dragon 11.5?"  i looked....don't u know the stupid ass man installed 11.0 so now what do i have to do?  find more clothes, haul my ass off to the banking center AGAIN and sit and wait for the 5hr installation of the 11.5 version - STEUPS!!!  Doesn't he know that i have MS and this is all a process???? (and it may not be easy one either)

I guess i should look on the bright side...i am getting it installed and it's all for free - let's not lose perspective here, but is it too much to ask for people to do what they are supposed to do the 1st time around???  fcukin-a!!

Conversation on d Boat

i hadda preface this post by giving a little history.  I guess that most people are somewhat curious, so alot of times, i'll be out and about and someone will ask me what happened or what's wrong.  Other times, the question is "did u have foot surgery, or did you hurt your leg?".  when i'm asked those type of questions, my standard answer is, "I wish i had surgery (or was injured) because that would mean that i'll heal...no, i have Multiple Sclerosis." and the conversation will either stop there (sometimes, i can tell that the person is a little embarrassed ( maybe because they wished they weren't so fas - not that it bothers me?) or go on.

so...Saturday was a boatride on Lake Lanier.  We are in the middle of a heatwave - the high was 106 degrees, so even though i was feeling somewhat alright (sitting in AC in the car), my body was not.  J carried me to the boat - as the people in the south say, "Bless his heart" because it wasn't a short walk (he actually split the distance in 2 and took a lil rest in between) and then even when we got on the boat, KI took me up the stairs - i'm still a little unsure of how he made that happen.  so in other words, ALL the passengers knew that obviously, there was something "wrong" with me. 

Anyhoo, so we set up my chair and get situated and i'm sitting trying to get cool and this chick comes up to me an introduces herself and the conversation goes like this:

blah blah blah

Chick, "So...did you have back surgery?  what's wrong?"

Me, my standard answer, "no (remember my little history)...I have Mulitple Sclerosis" (I always say the whole thing because i'm not sure how many people actually know what MS is)

chick (really enthusiastically): "Wonderful!!!"  

Me (in my head): eh?  really?? u not serious are u???  out loud: (not a damn thing - good thing too)  I think i was a little taken aback

she then went on to talk about how it was great that i was out and enjoying the boatride and "taking a wine" as only i can and it was refreshing to see that i wasn't letting it keep me back.  oh, okay...thanks :-)  but i just couldn't believe it when the 1st word out of her mouth after being told that i have MS was, "WONDERFUL".  LOL - i had to give her a bligh after she continued.