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. 

Bout of Depression

had a lil bout of depression last nite.  I normally work out at a gym (i've actually changed from Reggie and the old gym), but last nite long story short, i had to stay at home and workout.  Now, working out in the gym and working out at home of course are 2 completely different things and i definitely prefer going to the gym.  Anyhoo, so by the end of the hour, i was completely frustrated because "easy", "simple" things i just couldn't do or was completely struggling to do.  you know how hard it is to bend your legs when all they want to do is remain straight????  ugh!! 

so my trainer left and i went to lock the door behind him and went down (yup, numero cinco).  I moved my left foot to take a step and it kinda caught on the tile so i ended up taking a half step instead, only my body and i thought i was taking a full step so i ate tile.  i remember grabbing at the door (a flat surface) so of course it did no good!  all was well, i think i hit my head a little, but ended up on a case of water - so i guess that "cushioned" my fall.

so...the "workout" + the fall + my entire situation = a depressed Stacey

it didn't last very long...but it happened anyway

Just Some Ole Talk

so...it appears that i had a really really good time for my birthday this year.  Not only did i lose my cane holder and had to buy yet another 3 pack, but apparently i also lost my "Saturday" pill box!  these days i'm using Thursday's box on Saturdays and really trying to keep up.  signs of a great time!  I've mentioned this here before, but i think it's worth mentioning again.  It's amazing to me how much better i am on the weekends than during the week - I really don't get it.  I honestly think that my body doesn't appreciate being jarred awake before it's ready to...that must be it - go figure. 

I always laugh at some of the situations i find myself in because they are just so flippin crazy. 

a few Saturdays ago i had to wake up at the crack of dawn to go get a hair cut.  I've decided that i'm going to make the sacrifice and wake up early to go the barber shop so that i don't have to wait for hours for a hair cut and waste my entire saturday there.  so i woke up early (8am) and got dressed, went downstairs to eat breakfast, but time's a wasting, so i decided i'll drink my coffee on the drive down.  I headed downstairs with the cane, my phone and a cup of coffee.  Did i mention that i was a little unsteady?  i was...we have an  alarm in the house, so everybody with an alarm system knows that when you set it and leave the house, u only have so much time to get out before the system arms.  I never have problems with that; i always can get out, no probs...except for that day.  i was moving so unsteadily and slowly that morning, plus i had a cup of coffee in my hand that i REFUSED to let spill, that each time i tried to get out after i'd set the alarm, i had to reenter the code to stop the cycle and try again.  oh boy, would i EVER get out of here...on the 4th try, i made it!  whew!!!  time's a wasting - trying to get there before the whole of Atlanta!!!!

Yesterday, i went to a store, parked the car and got out.  Now, i can't describe just how i parked but suffice it to say that it was a little precarious"ly" parked - just a little.   Anyhoo, so i go in, did what i had to do, came out, opened the door to leave and couldn't get my feet in the car!  try as i might, i just didn't have the strength to lift my right foot all the way into the car.  what the?!?!? really????  i tried a few times well and all i could do was think about what i looked like to someone who happened to be looking out a window or something at the same time.  LOL!!!  I eventually planted my ass on the seat, relaxed a little and then finally was able to swing my legs over to the right and into the car so that i could make my way home - of course, was i totally surprised?  ah cyah lie, no - i'd already done a few things for the day and the car was in an odd position.

Never a dull moment...it's just funny the situations i find myself in - i really can't make this shit up!

Multiple Slerosis

MS really is a nasty disease.  I had my 24th infusion and 3month follow up with my neuro yesterday and for some reason, there were more people than normal in the office at the time i was there and it hit me that there were so many varying disabilities - not varying degrees of the same disability, but varying disabilities. 

• there was an old man in a wheel chair who appeared to be suffering from the swallowing problem that afflicts some.  I say "appear" because he had a towel and kept wiping his mouth, i wasn't close enough to him to see exactly what was happening - so many people have problems swallowing or can't swallow at all.
• there were a few folk with canes who ran the gamut.  there was me who was kinda struggling yesterday and then there was a woman who didn't even seem as if she needed one.
• the woman in the scooter who appeared to be completely weak on 1 side of her body
• there were people with varying types of walkers - with built in seats, without built in seats
• of course let's not forget those who have no visible disabilities

i guess there was that constant of the walking disability, but still just so many varieties of said walking disability.  My neuro and i had the whole "should i switch or should i stay" conversation again because i am at the 2 year mark.  My risk of PML increases just a tad because not only am i JCV positive but i will be on Tysabri for more than 2 years - OH GOODY!!!  We are still in agreement tho that i will stay on Tysabri (that devil you know) what with the increased MRI monitoring and such. 

Speaking of which, no new lesions and no signs of PML from the MRI that was done in February.  so there is some good news!

#4

well...

i talked about it and it happened; I took a tumble on Saturday.  Everyone gets excited when they get a package right?  well i get excited!  LOL - indulge me for a few. 

• In college, my roomate and i used to send each other mail so that we would actually have something in our mailboxes when we check!  LOSERS!!!  As i "grew up" i wished i wouldn't get all the bills and junk mail.  In fact if we check the mail once a week these days it's plenty.  BUT!!  I still always anxiously await all my packages - cept my medication but hey. 

Anyhoo, so my packages normally come to the front door, but this time when i checked the tracking email, it stated that my tshirt was delivered but it wasn't at the door; this meant that it must have been in my mailbox.  I had some running around to do on Saturday so when i came back to the house, i decided to go get my jersey.  I parked, left the car running, got out and left my door open, made my way over to the mailbox, took out my package, walked back to the car and, as usual God only knows what happend, I fell into the opened car door! 

Thankfully noone was around, so my struggle to get out from tangled in between the car door and the car and to right myself was witnessed by NOBODY!  Of course it was on "Hard Hard Concrete" so once again the top of my foot is bruised up because there was some dragging involved to get into a position so that i could get up.  Of course i laughed at myself because of the ridiculous situation BUT i was happy because i'd gotten my package :-)

My picture options for falling are running low!

MS Awareness

Live Life Every Day

I was contacted by the co-founder of the inspirational clothing brand, Live Life Every Day.  His mother was diagnosed with MS over 20 years ago and they recently made an announcement that $1 from each shirt sold will be donated to the National Multiple Sclerosis Society.  Very apt timing too i think, since MS Awareness Week is next week.  Check them out:

Live Life Every Day

those are 4 little words that we should all live by, sick or well.  Live your life to the fullest because you just never know what the future holds. 

I was on a call yesterday with a chick and she started talking about how much work she had on her plate and that she was stretched thin (she wasn't complainin, we were just shooting the breeze).  we continued talking and eventually i told her about a line that i'd read in "Don't Sweat the Small Stuff...and it's all small stuff".  it reads:

• "Remind yourself that when you die, your "in Basket" won't be empty

I like to translate to "when i'm dead, my inbox will still be full"...it'll all STILL be there when i'm gone and life will still go on, so hey! 

• Live it up
• Don't sweat the small stuff
• Watch the movie, "Office Space" - you'll get a good laugh and see the them of this post in action

Live your life to the fullest everyday, life is just too damn short!

MS Awareness Week 2012

This year the MSAwareness week is 3/12 - 3/18...so:

• Wear orange
• Spread the word about MS
• Change your Facebook profile pictures

This year's campaign:

MS KILLS CONNECTION >    < CONNECTION KILLS MS

Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.

But what if we could defy this disease with the very thing it seeks to destroy: Connections.

Would we share more knowledge? More questions? More answers? More hope?

MS Awareness week will take place March 10 - 18, 2012, when people all over the world will come together and use their connections to raise awareness about multiple sclerosis, while encouraging others to join the movement toward a world free of MS. There are many ways for you to participate and we look forward to sharing this week of education, inspiration, and hope with you!

Maybe, by connecting enough small victories, we could win some really big ones.

MS Walk Atlanta

So...the walk in ATL this year...here's the site.  should be lots of fun!

d Limerz Crew

I have put a scooter on reserve, so i should be on the road with the walkers.  We will print jerseys, don't know if they will top the last ones, but we can certainly try.  LOL!!!

4/14/2012

2012 Catspraddles

Some of you might think that this is morbid/unnecessary/insert whichever word you think is best but i've decided that for kicks and giggles, i'm going to (try to) keep up with my tumbles for this year.  So far i think (can't remember for sure) that i'm up to 3.   The 1st one was bright and early new year's day @ 12:45.

• 2 Sundays ago, i stepped out of the shower and down i went.  As usual i have no idea exactly  what happened, all i know is that 1 minute i was upright and the next i was bracing myself for impact.  Now!  Falling with wet skin is actually funnier than not (once you realize that all is well).  what made it worse too was that i kinda fell onto the porcelain goddes, so:

wet skin + porcelain = no easy ladylike way to get up

LOL!!!

it wasn't pretty.  But!  i made it, had a good snicker and went on with my day.

• The other one i remember was trying to get out of a bed.  If the bed/chair is too low then i can't get out on my own (for the most part)  (of course, if it's too high, gettin ON is a challenge but thats a story for another day).  well this bed was kinda low and try as i might i couldn't get out of it.  It was early in the morning and so i didn't call for help because everyone else around was sleeping (i was in the room by myself).  it was again quite funny (at least to me) because nothin i did enabled me to stand upright and get out of the bed.  FINALLY after God only knows how may tries, i made it!  i took 2 steps and down i went - it was pathetic, because now i have to pull myself up from the friggin ground!!!  Did i mention that i was actually trying to get up to go and pee???  well the MS gods were smiling on me that day because somehow getting up from the ground was easier that getting off the bed, so if i remember correctly i only had to try 1 or 2 times to pick myself up and head to the bathroom.

So...i'm up to 3 so far.  only time will tell how i'll close the year and with any luck it'll be 3  :-)

It's Over!!

only 2 blisters later, it's over!

50 miles in 3 days!  this year, even tho she doesn't have that many blisters/bruises to show for it, she had to do it in the pouring rain :-(

but!  it's over and she did it!!

WOOHOO!!!!  G2's the BEST!!!

MS Walks 2012

G2 is at it again...50 miles  She's walking 50 miles for me...check out her page here (she coulda used a better picture of us in my opinion, but hey)!  She's all warmed up since she now come back from home AND playing mas...

G2's Personal Page

this year also my Atlanta peeps are walking.  That walk is the weekend of 4/15 and i'm currently working on the site, so i'll have to give the link at a later date. I'm not sure how they are gonna top the jerseys from 2 years ago, but the plan is to have t-shirts and make a big lime - much bigger than the last time - of the walk (u know how we Trinis do).  I'm thinking of renting a scooter here so that i can be on the road with the walkers (I'm picturing a rhythm section on Peachtree St. - HA!  they so not ready for us), if not, i'll just wait for them at the finish line like i did the last time.

so...looking to make a trip to ATL sometime?  come on down for that weekend.  it should be sweet!

Non Walkers 2010

Walkers 2010

Lent 2k12

i'm giving up meat (as usual) AND alcohol - wish me luck!!

*sigh*

it's Carnival Monday...i can't help but feel nostalgic at this time of year.  I not going home for carnival (i've said that too many times on this blog already), but i can't help but get into the music, the vibe, the fetes, the various live feeds.  it never helps that it's 80-90 degrees there but 50-60 here.  At least this year i'm actually off today and tomorrow, so i can pretend :-)

For the Trinis, enjoy my favorite Soca Monarch performance!  I'm a die hard Machel fan from long long time, but i feel that Prophet shoulda take home the prize Friday nite!!

the Cane Itch

i've been having an itch to buy a new cane for a few weeks now so i finally decided upon the "bull organ" cane.  figured it would be a cool talking piece and a nice addition to my "fleet" of canes.  Alas, the cane gods had other plans for me...the site from which i usually order only offers them in 2 sizes - 34 and 36, and it would be nice to be tall enuf for a 34" cane, but i'm not so the bull organ from that site is not in my future.  I found another site from which i can order it, but it would cost 100+ and i'm not at the point where i'm will to pay more than $100 for a cane!  bull penis or not, i'm not willing to spend that money.

So i had to settle for something else.  i bought an ergonomic one - i had to select whether i needed a right or left hand one and the thing came andi couldn't work it - ergonomics and all!  LOL!!  I was convinvced that they'd sent me a leftie cane instead.  Well i gave up and left it for G to give it a try; she figured it out and of course i felt like a jackass when i saw how easily and comfortably it actually fit in my hand.  i also bought another black one that is pretty normal, but it's nice and sleek with a silver collar, so i don't have to use the beat up starter cane all the time - I don't use the Smuggler Cane as much.

 

I'm happy with my new purchases...using the black one today when i go for my infusion :-)

so...

hated my house last nite.  steups!!!  i worked out yesterday and all i did was a whole setta ab work - wasn't even on my feet for any of the time and when i tried to go upstairs, i could barely make it.  swear i took 10 mins to climb the first flight of 16 - was awful. ugh!  at one point about 3/4 way up, i almost convinced myself that i could just sleep there for the night.

It's only 16 steps per flight, but it certainly seemed like this last nite!

As much as some people thank me for being honest and open here (and i am), i don't always share everything that i might be feeling/experiencing.  Anyhoo, i'm ready to share this story below here now.

so for the past few months, i've noticed that my left hand appears to be spastic as well. it used to be that i would notice it only when my legs were fatigued - really weird, that my legs were fatigued, so my hand would act up!  At any rate, what i used to notice is that it would tend to curl up (if u will) on its own and i noticed it only when i was walking if my arm was just hanging by my side.  These days, especially at the end of a working day of lots of typing, i tend to lose almost all functionality.  it curls up and i can barely find the strength to open it, far less use it to do anything.  It's depressing at times, but as usual, it is what it is - what can i do?  I'm dealing.

Life Without MS

Last weeek, i found myself wondering about how my life would have been like if i didn't have MS.  of course, the truth is i have no clue.  would my life have been better?  worse?  who knows?  there are 2 things that i can say without a doubt: 

1. I'd be dancing/winin up a storm at all the fetes i've been to and will be going to in the upcoming months - Carnival season is in full swing at home with the culmination on 2/20 and 2/21, so there've been a few fetes here and Atlanta carnival will be in may so fetes for that will start when everyone comes back from Trinidad.
2. I would definitely have more money in my bank account - without doctor visit copays and coinsurance payments and deductibles etc, i would be that much richer

Do i wish for a body without MS?  hell yeah!  who wouldn't????  I've heard stories of people who are glad that they have MS...am i one of those?  absolutely NOT - i'm sorry, but i don't understand that train of thought.  but, do i hate my life because I have MS?  of course not.  I'm had to make many adjustments and there are times when i look at everyone jumpin up and carryin on because of some of the sweet soca released this year and WISH i could be out there with them, but hey, i really have nothing to complain about. 
The other day at a Superbowl lime, someone whom I've seen at numerous fetes (don't know who she is or her name) stopped me as i was walking past and told me that she really admires/loves my attitude (I guess u can't really  miss me anywhere, i'm the only 1 with a cane)!

so, life is good!  life is sweet (even with MS)!!

Speaking of...

The decal expires at the end of this year, 12/12/2012 to be exact.  I remember when my PCP prescribed it for me - for some reason i didn't ask my neurologist - maybe i was still going to the asshole who insisted on calling me Mrs. O'Brien?  i'm not sure.. anyhoo, my PCP is very sweet - he actually kinda spoils me.  I remember years ago, i'd fractured my ankle and went to him.  the conversation went like this:

Me: isn't it bad enough that i should take some time off from work?

Doc: You want some time off?

Me: Of course

Doc: How much time you want?

Me: I think 6 weeks should do it

i walked out with a short term disablility slip for 6 weeks off - i LOVE him

Anyhoo, so when he was prescribing the decal, he said, "do you think we should put an expiration date?  i think so, lets be hopeful and optimistic...let's do 2012" (which at the time of course was soooooooooo far away). 

sadly, the time is almost upon us and i still need the thing (can't imagine life without it).  I guess at the end of the year i will go back to him and either get an extension (i can still be hopeful) or might as well get a non expiring one :-(