Atlanta Carnival Review in Some Pictures

this is plenty pics but bear with me...

that left leg jes likes to be straight regardless! :-)

this fella was too much fun!

Band Leader

10 Things I Couldn't Live Without

I mentioned a challenge i signed up for and FAILED - a post a day for the month of April.  well i'm cheating a little now - I'm using one of their topics to create today's post...so here goes.  My list of 10 things I can't live without (in no particular order)...

1. My support groups - the inner circle and the not so inner circle, my family and friends - without them - woe woe woe would be me, i can't even begin to think of what i would do without them. 
2. ALCOHOL - i'm no alcoholic in fact i like to think of myself as an alcohol lover - to steal a phrase from someone - an alcohol "connoisseur" if you will...but let me tell u, this shit would be so much harder to deal with if i couldn't indulge from time to time
3. My (AM/PM) pill boxes - I actually just had to order another set of 7 - i always know when i have a good time somewhere because for whatever reason, i come back with fewer than i left with (right now I'm recycling 3!)!  I would not be able to keep up with the pills i need to take daily AND at specific times without them.
4. speaking of which...the daily pill alarms - what?  U think that because i've been taking them EVERY DAY at the same time that i would remember to actually take them?  NOT!
5. My canes - God forbid i didn't have those things
6. My handy dandy handicap decal - nuff said!
7. Shoes with a small heel - i just don't understand why  the hardest thing that i ever have to do at any given time is walk barefoot OR walk in a flat shoe; it can be quite depressing (not being able to walk barefoot, that is)
8. A walk-in shower - i was never a bath person but i do remember that when i moved in here, i was a tad bit disappointed that i didn't have a bath tub.  HAH!!  these days i am so, so, so glad that i don't have to deal with stepping over the edge of the bathtub to bathe...ugh!  it would take me so much longer every day just to get ready
9. My ability to work from home - ugh!  going into an office every single day would just be so difficult for me - i shudder to think
10. My cellphone - it doesn't grow out of my ear like some people, but i really need to have it with me at all times.  Think about it, when i find myself in those funny situations, i won't be able to pick up the phone and call someone for us to both laugh at myself or be talked "off the ledge" 

There you have it (and i'm sure i can keep going) but...i'm not sure how i would go on without the items on this list, some of course, are just a wee bit more important than others :-)

the "Good" Ole Days

went for my infusion on Tuesday...I had to be stuck 4 times! it brought back memories for all of us in the room...
Truthfully, i havent been drinking water like i normally do/should be for the past few weeks, i knew that things might have been tricky.  in fact, it wasn't until Monday nite, i said to myself, "shit, i have an infusion tomorrow - i should have been drinking water for the past week!"  there was a new nurse there too and the older heads let her come to me (poor thing); she didn't stand a chance in hell - she kept apologizing and eventually gave up after the 2nd time.

I also had a follow up appt. with my neurologist.  good news - there is no additional scarring/signs of PML on the last MRI so things are stable.  Unfortunately, Stacey being Stacey took advantage of the fact that i was off the entire day, so i went to the barber and made another doctor's appt that morning so by the time i got in to see him, i wasn't in good shape.  I wasn't the worst i can be, but i was bad enuf that he was concerned.  i told him that by the time my infusion was done, i'd be ok...and of course i was.

On a side note, he opened the exam room door and exclaimed, "oh!  what did u do with your hair?" (remember i'd just come from the barber so it was fresh)  well i still havent answered him because i was in so much shock.  First, he's a man and secondly, he's my doctor who i don't see that often (granted he's seen me with my mohawk already but still) - i couldn't believe it!!!  LOL

oh...P.S - i'm up to 8 falls now.

okay

i know i promised u my story "tomorrow" but allyuh hadda gimme ah bligh, i've been sick like a dog since i came back.  i didn't even work last week THursday or Friday and those who know me well know that i must been rhell sick because i don't like to call in.

so...we decided to go and lime in Bootleggers in Trincity Mall; it's a sports bar.  Problem was that my parents weren't sure which door we should go thru for the shortest walk for me.  OB deposited us at the one nearest the elevator because of course, Bootleggers is upstairs.  Well turns out, that door was about 6 miles from the place - okay, so maybe i'm exaggerating just a tad, but i swear thats how it felt to me :-)  we walked down 1 aisle, then another only to discover that the elevator was OUT OF ORDER - fckin A!!  Did i mention that Trincity Mall is apparently the biggest one in the Caribbean???by this time, my left leg was saying, "oh hell no, u not serious!!" but i kept going.  problem was that Bootleggers was upstairs and the elevator wasn't working....we came up with a plan.  My cousin, AA would go on my left and Learls would be on my right as i board and come off the escalator.  ordinarily i could use an escalator as long as i step on and off with my right foot...well this time since the left foot was already saying, "uh uh, nope i done work" things were  going to be tricky.  getting on was okay, coming off was a little unnerving but we made it.  so now Bootleggers is around the corner.  "around the corner" for normal folk is around the corner, "around the corner" for me sometimes is 2 miles away and that nite, it might as well have been 12!  At that point, the group decided that it was time to take drastic measures and AA held the right leg and Learls took the left and they carried me the rest of the way all the way into the bar.

We got in and had to wait for a few minutes - i sat down during this time to try to get the left foot going again.  Alas, it still didn't feel like working by the time we were to be seated so here we were - a group of people taking 2 steps every hour thru the bar because 1 of them was having problems - at that point OB took to bending down and "walking" the left foot for me.  a fella took pity on us and allowed us to use his booth that was closer and the same size (he was waiting on his party to arrive).  All in all, a good time, but what excitement/drama to get there.

Of course at the end of the nite, since i was sitting for the whole time, i was able to walk out and wouldnt you know it - we discovered a MUCH closer door - will definitely remember that for next time!

Fun times cyah done!!!

Home

I went home last weekend.  For those reading and finding this out for the 1st time, doh cuss meh; it was a very short trip and i spent the entire 4 days in my Trincity.  i eh go lie, i was concerned about how the temperature would affect me, but didn't really care.  truth be told, i had thoughts of  "since i'm home, maybe the MS and my body will act right and everything will miraculously disppear".  well - HAH!!!  that sure didn't happen, in fact, instead of being shaky/unsteady (i'm not sure how else to describe) some of the time, i was like that ALL of the time.  oye!  pressha!!!  i didn't let that stop me tho - i had a GREAT time..Trini sweet too bad and my family is a riot!!

I had no falls, but, of course there is a story!  of course, at the end of it all, everybody was laughing, but i tell u...okay sorry, i can't type it all right now, but i'll definitely tell it tomorrow - promise!

Atlanta Carnival in Review

well...who woulda thunk it...atlanta carnival turned out to be GREAT!!  i must say, i was hoping for a good time but my expectations were low and the weekend turned out to be a fantastic one.... now of course, the story.  it just wouldn't be normal if i didn't have at least one story to tell - and guess what, we can't directly blame the MS altho it was its fault.

i think i mentioned that we were in a band - i don't remember the last time that i was even remotely interested in Atlanta carnival, far less for playing in a band but this year since K was involved, we decided to go for it.  You all know that the last few times i've been in a band i've been on the truck (see Miami and DC) but since i've discovered the scooter, i decided to get a scooter for the road.  well!  i won't go into a whole lot of detail about the trials of our getting the scooter into the car but suffice it to say that we were a little late actually meeting the band because of it.

so we rolling down the road and all is well - quite frankly i think the scooter was one of the biggest hits of the road- i don't have pics yet but i will post as soon as i get them.  anyhoo, so at some point i don't remember who i was messing with and doing, but i hear G saying, "foot/foot" but u have to understand music was blasting - i had no idea what she was saying.  i figured out after that i was stopped on top her right foot!!  oops...so i rolled off, but she was limping a little for a while after that!! 
Again, rolling along minding my own business, when she jumps in front of me and it destoys her left foot!  in fact she has big cut where it hit her.  so...u know it! more limping again. 

so after i'm not sure how long - the route was long (not sure how long we were out there but it was a long time) and the sun was HOT!  i loved it and got burned; i'm nice and chocolate right now, but remember heat does a number on MS patients.  what happens to me is that my limbs get real, real heavy, so needless to say driving the scooter wasn't as easy as when i started so G took over.  I mean we're used to that right?  HAH!  well yes, but...

well!  at some point, we were bending a corner on a slight hill and the next thing i knew is that we were doing my normal - eating concrete!  DOWN WE WENT (scooter in tow)!!  LOL!!!  i remember sneaking a peek and feeling so happy because she was also down on the ground; it's always just me that i was happy i had company this time :-)  of course the difference was that as soon as she hit the gound, she was up but my ass stayed there - the MS+HOT pitch= Stacey not moving an inch!  no biggie tho because alot of people saw and came to our/my rescue including an EMT who was parked in his ambulance right behind us!  in fact after checking to make sure that we were alright he said, "well u picked the perfect place to fall - right in front of us".  G has 2 bruises on her thigh from the fall (i have nothing; I'm used to it) and needless to say, she could barely walk by the time we got home.

GREAT/HAPPY/GOOD times...all in all the weekend went really well and as much as we partied and as much as i did, i had no problems whatsoever - now, on to the next one!

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.

The Weekend Gone and the One Coming

woohoo!  Stacey behaved and did what she was supposed to do. on Saturday.  

Cooler fete was Saturday and the only thing i did for the entire day was go to the barber at 9:00 the morning, so when i got to it, i had all my spoons left :-)  and more left over at the "end" when the cops showed up.  i'm to the point that i may give up cooler fete because it's just not worth my time anymore.  I am seriously convinved that there is a cop in the Dekalb County Police Department whose sole purpose in life is to find the cooler fete flyer every year so that they can come and fcuk it up for all of us.  This year the party was in the middle of NOWHERE and they STILL showed up and shut it down - steups!

this weekend is atlanta carnival and for the first time in a long long time, we will be on the road with a band.  truth be told, i think that as far as carnivals go, atlanta's is crap, but this year i'm willing to give it a chance (we'll see if i'm plesantly surprised).  K is involved with a band so my spot on the truck is booked, but i decided to rent a scooter again so i can be on the road - having MS is an expensive gig! 

is pace right thru from Friday to Sunday.  serious spoon juggling/management to do, so we'll see how things go...

 

Cooler Fete Cometh

saturday is cooler fete.  Of course i have to do my toes, cut my hair, do my eyebrows and i swear there's something else.  I'm not going to act like i did last year tho.  I will keep in mind that i have bout 3 (okay maybe 5) spoons to work with and will split up all my "shit to do" so that i have most of my spoons left by the end of the nite in the party - i've said it before, i'll say it again - it's the 1 fete in Atlanta gearing up for Atlanta carnival later this month that i actually look forward to every year.

Can't/refuse to miss it; i already missed out on another good fete 2 weeks ago because i messed up during the day of.

Things I Hate to Do

since living with this wretched disease, i have developed a dislike of doing some normal, regular, run of the mill things. 

i absolutely DREAD when i have to get on an elevator when there are 3 or 4 in a row. 

• picture it:  i approach the elevator bank and press the button.  problem is, the buttons are close to the end of the row of elevators and when i press the call button, the elevator at the opposite end is the one that gets there - UGH!!  i NEVER make it to the elevator before the doors close for it to start moving.  of course, i'll have to wait for that one to leave before pressing the button again in the hopes that one closer to me will open.  in fact, 2 days ago, it was the one right in front of me (i can't remember what was going on) and i had to re-press the button to get the doors to stay open. when we were in Vegas, it was happening even when i was on the scooter, but luckily someone else soon came who was able to hold the doors for me. 

i move so slowly that i hate having to come out of a car if it's raining - not torrrential rain, a slight drizzle.

• i lived at home until i was 19 and i NEVER owned an umbrella.  what do they say about old habits?  i still don't own an umbrella so if i have to get out the car and it's raining and i'm by  myself,  i'm screwed.  i take so long to get out (and walk of course) that by the time i get where i'm going, i'm soaked!  You'd think that i'd buy an umbrella eh?  haven't yet!

i prefer not (i wouldn't say hate) to get in a car on the non drivers side

• my left leg is weaker, so 6/10 times, i need help to get into the car unless i get in behind the driver. 

i hate getting to a door and realizing that it is a "Pull to Open" and there's no handicap thing to open it automatically

• opening doors while being a lil unsteady and walking with a cane is jes not an easy thing (for me) to accopmplish

anyway, i'm off my soapbox for today...back to ur regualarly scheduled program...

My Dream Day

how will my "dream day" be spent...hmmmm...

I will have to thank God for that day - that's for sure!  Can you imagine?  :-)  i think i'll stay up for 24 hrs that day.

after that...well, i will run EVERYWHERE - LOL.  U know how lil children have all dat energy and we just don't understand where they get it from?  well that'll be me on that day.  LOL - there'll be no stopping me.  Of course it goes without saying that my canes will definitely have a day off to rest and rejuvinate.

i think i'll hold my pee until the end of the day - okay,so maybe that's not the best idea, but i definitely won't be going to pee jes because there's an usable, available restroom.

hopefully it's a saturday and there'll be some fete for me to go to.  If not, i will find somewhere and go and "wine an touch meh toe"...oh, if it's a weekday, i'll be calling in that day - fo sho!

It'll be a day FREE of pills and the life alert bracelet (even tho every now and again i have those days anyway).

I think i might run up and down the steps a few times just for the hell of it...what else, what else...I'll be in my glee that's for sure - lol...oh well. 

a gal can dream...

Sigh...this MS

I found myself in a bit of a pickle this past weekend.

I was caught in an awkward, slightly embarrassing situation that for the life of me, i couldn't get out of.  I wasn't at home, spent the night out and very long story short, i ended up on my back on the floor of a room and COULD NOT MOVE!  Luckily, i was by extended family so as embarrassing as the shit was, it could have been much, much worse.  How do i know for sure that it's okay to blame the MS?  My heart was racing, i really was in a panic and trying so hard to get up but i just couldn't - i really was stressing!  when i say, my body wasn't going anywhere, i mean it wasn't going anywhere - all i could do was move my arms.   I went as far as to call out for help, but alas, that didn't work either...

Eventually i told myself that if i just lay there and try to be calm, everything would be okay.  That worked...as soon as my heart stopped racing and i calmed down, I was able to get up and move around.

Fucking MS!!!

Up to 7 - Steups

yesterday morning i fell in my kitchen.  I hit my head (and boy did it hurt) but all was well afterward, so no need for concern.  i also forgot about 1 that i'd lost track of - don't know what made me think of it the other day so i'm up to 7 for the year :-(  7 falls in 4 months - oh goody!

Funny Story bout that Ink

so...long story short, i was getting a paper from a guy to sign and reached out my left hand so that i could sign with my right and the conversation went like this:

me: sure i'll sign it

fella: oh my mother has MS too

me (in my head): eh?  what?  i never said i had MS..what the?  out loud: oh, how did you know?

fella: uhm (and points to my wrist) (i know that in his head, he was thinking "duh!  it's right there on your wrist"

me: OH!  LOL (anyone who knows me knows that i literally laughed OUT LOUD)!!!  I just got it 2 weeks ago...i completely forgot - LOL!!! 

Well we had a good laugh, talked about his mother a little and then went on with our days.

Superpower Day

So i signed up to take a 30 post challenge- 30 days, 30 posts (on this blog) and i FAILED miserably.  It was supposed to be for the month of APril.  If i'm not mistaken, 4/1 was either a Saturday or Sunday, so from the get go, i was out!  well, one of the topics was a Superpower Day.  If you had 1 superpower for 1 day, what would it be?

I believe that mine would be the ability to teleport.  Do you know  just how many days, i look up to the top of the steps and think, "ugh!, y can't i just sleep/stay down here?" OR if i go somewhere and have to walk in to a place and the walk happens to be a long walk (I try to save my walking for important stuff), do what i have to do, then walk BACK out!!  it would be so nice if i could close my eyes or click my fingers and in 2 secs i could be where i need to be.

or...how bout if i could close my eyes or wave my hands and me and all my fellow MSers and all sick people could be healed -wouldn't that be great?  i could wake up the next morning and go back to a dance school, i'd go home for the next Carnival for sure and tell Tysabri to kiss my ass!  I'll keep the canes tho - they kinda cool and i like them.

ooooh...also how bout if i realize i going and eat dirt/concrete and i'm in a lil embarrassing situation, i could close my eyes and become invisible.  now, that would be great! hmmmm, what else????



okay...i'll stop now.  maybe it's just as well that i don't have a superpower for a day - i wouldn't know what to choose!

Ink

A few years ago, i decided that i wanted a tattoo.  A few people told me that it's permanaent so you really want to put something that means a lot to u, think about it carefully, the shit is permanent etc. etc.  well i couldnt think of anything, so i started piercing my ears instead(!)  i have a cartilage piercing and a tragus piercing in addition to 2 holes in my lobes (all in the same ear) - btw, a tragus is the little flap right above the ear canal (Who the hell knew!!)- sounds almost rude.

about 3 weeks ago, i'm not sure what i was doing and it hit me...i want an MS related tattoo.  i mean, the shit is not going anywhere, it has alot of meaning to me, have to deal with it every day - that's a good one to have (i think).  i now have this on the inside of my left wrist (i thought it fitting on the left side since that is my trouble side)...

An Award

Got an award today!  thanks Karen @ Meandering...One Moment Please!!!

Liebster is a German word that translates to; dearest, beloved or in this case favorite. The idea of the Liebster Award is to give it to an up and coming blog with fewer than 200 followers. – in order to create new connections, and bring attention to their wonderful blogs. 

Thanks again Karen!

Here are the conditions that go along with accepting the award;

1. Thank the Liebster Blog Award presenter on your blog.

2. Link back to the blogger who presented you the award.

3.  Copy and paste the Liebster Blog Award on your blog.

4. Present the award to 5 bloggers who have a following 200 or less, who you feel deserve it.

5. Let them know they have been chosen by leaving a comment on their blog.

Sherry @ Messy Mind
Macajuel @ Two With Slight......
Herrad @ Access Denied - Living with Multiple Sclerosis
Wizzy the Stick @ Breakfast Lunch Dinner Punch
Nicole @ My New Normals

MS Walk Atlanta 2012

I've been scarce these past few days - i been busy, busy, busy - work, organising the ts for the walk, all kinda ting - forgive me!

Anyhoo, so i went to the gym yesterday and while i was resting between sets, an older woman came up to me and said, "u r great.  i just wanted to tell u that u are my inspiration to get here...everytime i think "uh, I don't want to go to the gym", i think about u...i think, "if she can do it, i defintiely can" and i drag myself here".  she made my day!  it was so nice to have someone who i don't even know (and truth be told, i can't even sasy that i've ever seen/noticed her before) come up to me and say that.... :-)

The Walk was Saturday.  We had great weather (even tho i was ah lil cold riding thru the park), a great turnout and a great time was had by all.  I can't thank everyone enuf for coming out. After the walk, most of us moved the lime to Tucker and the good times continued (everyone had strict instructions from K that there was to be NO LIMIN in any bars downtown, we could go NOWHERE butTucker because i had to go to a party later that nite and the lime in Tucker would take less of a toll on my body than out and about)...enjoy a few pictures...

Prohibitions

I'm banned from...

• Entering a liquor store
• Taking a dip in the ocean

1. It's weird how things happen.  9 1/2 years ago, G and I found the perfect house for us (or so we thought at the time - today, my idea of perfect is a little flatter).  There are 3 bedrooms, 2 of which are of comparable size (not a HUGE one and 2 closets) so we were both able to each have our own big nice space in which to live.  yeah there were 32 steps, but who really cared at that point - that's how we could get our exercise :-) and lo and behold, wouldn't u know it, the little strip mall thing next door had a liquor store!  WOW!!!  it was PERFECTION!!!  over the years, of course we forged a relationship with the owners.  we know them, they know us - i mean c'mon, it's been 10 years (in August).  well, these days, i'm not allowed to go into Nick's - not that i really want to anyway; i'm deathly afraid of what could happen.  The picture in my head is one of my being on the floor covered in vodka and broken bottles.  what the hell will my bill be that day????  i shudder to think!
2. a few years ago (think it was 2009), i was in Miami for carnival and we went to the beach.  Back then, i wasn't using the cane and off i went into the ocean.  well...long story short, every time a wave broke, it slammed me down and back - i wasn't far out at all.  A was trying to tell me that i should come out, but those were my hero days, so i was trying to brave the shit out.  By the time i figured that maybe i should come out and not let the ocean win the battle, i could barely walk out (of course) and (those of u who are frequent beach goers will understand this) i looked like one of those kids who bathe in the sand and come out with a shitload of sand in their bathsuit.  So, naturally, i'm not allowed to go in the water anymore!!!

These bans are actually not self imposed, but i recognize that they make sense and probably are for the best so i adhere.