Multiple Sclerosis & Me

the Cane Itch

2012-02-17T11:44:00.001-05:00

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...

2012-02-15T15:25:00.000-05:00

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

2012-02-08T10:06:00.003-05:00

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:

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.
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...

2012-02-01T12:03:00.005-05:00

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 :-(

I Can't do Without...

2012-01-31T08:33:00.002-05:00

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.

Let the Games Begin!

2012-01-23T13:54:00.000-05:00

so the woes have already started for the year. Luckily this turned out okay, but they have started nonetheless. My infusion was scheduled for 1/20. On 1/19 around 3ish (!), i got a call from an associate at the MSCA (where they are performed) stating that i will need to reschedule because a new thing with my insurance company is that all MS drugs have to be approved and they hadn't received my authorization as yet.

okay, i guess (i hope they approve and are not tired of spending money on me) - well while we were trying to figure out a good time for me to reschedule, we found out that i was out of compliance as far as timing is concerned! eh?? how did that happen? the infusions need to be done every 28 days (give or take 3 days)...i was already into my 10th day out of compliance. Granted i was out of town on the 28th day, but shouldn't the scheduler have taken that into consideration?? it's not for me to keep up is it? right at the time that i could have started complaining, i realized that i was supposed to be on a conference call at work, so i told the chick that i would call back to reschedule.

An hour later, i called back and long story short, was told that they'd gotten authorization. i found that hard to believe and i asked that person if she was ABSOLUTELY sure that the authorization was received for me because if not, u know what that meant? i would have to pay for the infusion myself because surely the claim would be denied. She was absolutely sure and i went on 1/20 acc. to plan, but i was still skeptical...

hopefully there is not more to this story

My Birthday

2012-01-20T09:32:00.000-05:00

so my birthday plans went off without a hitch. In fact, it was a great weekend and a good time was had by everyone involved or who was there at some point. For the past 2 or 3 years, i've had to put my birthday plans on hold because of the weather, so this year I flew out and left the cold behind (for the most part) and celebrated for 5 days straight - it was fantastic. I am happy to report that the MS understood the need to chill out and i only had 1 mishap.

One night i literally took a nose dive into the ground. not sure how it happened...1 minute i was walking forward and the next i had "assumed the perfect pike position" (as it was later described) and was headed nose/head first to the ground. But...all was well. AC happened to be standing next to me and dove in right behind me, caught me and was able to avert any disaster. Turns out the situation was quite funny to everyone after the fact - the way it happened, the reactions of everyone around, the aftermath - it was all quite funny.

Anyhoo, so it's back to the grind now. All good things must come to an end...time to replenish all the money spent within the last 2-3 months :-)

Traveling

2012-01-19T09:05:00.002-05:00

so why is it that i cannot walk barefoot??? it's so odd to me! walking without shoes is 1 of the hardest things that i ever have to do!! so imagine doing it while going thru the airport security scanner! ugh!!!
i remember when i first came to this country, i was staying with a few friends of Learls (my mother) and they told me that i should always be on the ready. If i'm going to order something, know what it is i want, have my money ready and order without dilly dallying, you get the point. so anytime that i know people are behind me waiting for me to get out of the way, i really try to be on top of my game - except of course when i'm just walking going somewhere; those times i move out of their way and let them pass because eh no "walking faster" happening around here.

traveling alone is not a problem; i have no issues doing it - except when i have to walk thru the security scanner! where is the one place that EVERYBODY rushes? thru the airport! Years ago, i had a job there - i was the one pushing the wheelchairs and driving the carts up and down the concourse and it was always so funny to watch people rushing/pelting down the concourse and banging on the doors for the plane that took off 1/2 hr before. People are always rushing! and then here i come just barely able to walk and stay upright because i have to take off my shoes AND put my cane under the bag scanner and i can't hold on to it for support either - i ALWAYS feel pressured; say what u want, it is what it is, i can't help it.

Now i do have the option to be patted down instead while i remain seated in the chair but...i think i have a mental block of sorts against that (i can walk so i will walk thru the scanner sort of thing). I have done it twice, but I'm not ready to make that decision to do it everytime. So until then, i guess i will continue to feel pressured to make it thru the scanner without incident, while the person behind me taps his foot and looks at his watch waiting for me to get thru so that he can continue on his journey to catch that plane that has already gone!

Birthdays

2012-01-11T11:28:00.000-05:00

Happy birthday to me

Happy birthday dear Stacey/Graham/OB

Happy birthday to me!!!

Okay. I had planned on publishing this yesterday, but never got around to it. Bigger than usual plans this year because of the milestone. So as they say, "fete now start!"

:-)

2012

2012-01-03T15:06:00.002-05:00

has begun and i fell already; happened about 12:45am - great! just great!! i'm off to a bang up start of the year.

i'm not big into making resolutions or anything like that. I always think about what the year might have in store for me "MS wise". in fact, i normally think about that and wonder..."hmmm, will things be any different by the end of the year than how they are now? what could potentially happen this year?" last year, i had 2 nasty/scary falls - 1 in February and the other in April. will history repeat itself this year? will i have other things to suffer thru? of course, with MS, it's possible to suffer thru those thoughts on a day to day basis (will everything be alright when i wake up tomorrow morning) but i tend to mainly focus year to year...only time will tell but i am always hopeful.

Of course, with the new year comes a new cycle of insurance issues, copays, coinsurance payments etc. gotta love that happening right? it's funny, now that i'm "sick" i'm a PRO at all things to do with insurance. I used to think that insurance was the biggest rip off ever. now? not so much! boy am i glad that i have it and from some stories that i've heard/read, i have pretty good insurance too. i guess it goes back to the fact that i understand how it works and can REALLY appreciate what it does for me.

Anyhoo, i cyah bother lose too much sleep over it. what is to be will be - i can't do a whole helluva lot about it. I'll continue working out, eating properly and enjoying life to the fullest to keep shit at bay but...
Right now, i'm looking forward to my birthday because "they" say "life begins at ___ ". I'm celebrating this one in a bigger than usual fashion - should be a BLAST!!!

Christmas

2012-01-03T14:36:00.000-05:00

was great! oh what a time we had in Vegas. I'm back at work as usual, so no big winnings on this trip, i spent way too much money, but that's why i work so hard on a regular basis...but oh what a time!!!

so...a few things...

i was able to rent a scooter (a good one too, boy was it fast!) for the entire time that i was there. those who've been to Vegas will tell u, it's a walking city and there was no way that i could survive without one. it was the 1st time that i've ever been out and about in a scooter and i noticed that people generally didn't talk to me...is that normal? hell if i know, but for the entire time, there were about 2 people who actually looked at me in the scooter and asked me if i could walk in their establishment/thru the area/wherever i had to go - they would always ask G "if she can walk..." again, is that normally how the disabled are treated? dunno but it was somewhat insulting. "HELLO!! I'm right here"
You "walkers" - LOL - are amazing. There were quite a few collisions because people were walking and looking EVERYWHERE but where they were going - they walked right into me! i am used to lying down on my car horn if necessary, didn't realize that i'd have to do so on a scooter as well - CRAZY!!!
of course, shit woudn't be normal if i didn't fall. It only happened once and it was in the hotel room; it really was a "good" fall, but it wouldn't be right if i didn't mention.
back to the scooter...G sped us thru a few hotel lobbies one nite because she didn't feel like walking back to the room. we had a long way to go and it was at the end of the nite, so she hopped a ride - that was fun; scary at some parts but fun! :-)

here's a better one of our faces...we look kinda weird in the top picture...

All in all, we had a great time and now back to the grind, business as usual because all good things have to come to an end.

Old Years

2011-12-30T20:28:00.001-05:00

Happy New Year folks!!!!

Cheers to a safe and prosperous new year

MERRY CHRISTMAS!!!

2011-12-22T18:24:00.002-05:00

i'm a lil early but...

i hope that santa is good to all of u. he's been good to me so far, i'll be in my in favorite place - CANNOT WAIT! if i've been a really good girl this year, i'll come home with a fatter/heavier pocket :-)

Anyhoo, all of you be safe, be merry, drink plenty sorrel and eat plenty ham...

And the "Winner" is...

2011-12-14T09:18:00.001-05:00

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".

Dreams Suck Sometimes

2011-12-12T09:26:00.001-05:00

Friday nite i dreamt i was at a party and dancing up a storm and walking thru the crowd dancing...i was so happy and having such a good time...

and then i woke up! Steups!!

this is the reality...

Christmas Spirit

2011-12-09T11:38:00.001-05:00

so i eh really have any spirit this year - i'm just counting down the days to board the plane to Vegas.

Some people say their favorite vacation spot is somewhere with white sand, crystal clear water and a drink with an umbrella - man, send me straight to Vegas - love that place.

Anyhoo, so since we not doing Christmas really, i havent really gotten into it...but what is it about Parang, Soca Parang and traditional Christmas music that does the trick? I've been listening to it for the past 2-3 days and now i can't wait to make sorrel and rum punch and stock the fridge. I think that the tree is also going up pretty soon too.

Enjoy!

It's Christmas - Baron

Carol of the Bells

Decisions, Decisions

2011-12-06T08:49:00.001-05:00

so next week Tuesday is the appt. with my neuro. I will have to decide whether i want to stay on Tysabri or not. As i said before, the one thing i know for sure is that i cannot go back to injecting myself so the only other option i'll consider is the new oral drug, Gilenya. If i'm to be truly honest here, have i given a whole lot of thought to what i'm going to do? no! i really still am not sure...

Fear of the unknown is something that i've struggled with in the past and i think that this is a classic example. Gilenya was approved in the early part of this year (or late last year). I feel as if it hasn't been on the market long enuf for "them" to really really have a grasp on how it could affect the masses - 2 years from now, "they" will discover that it actually causes patients to grow an extra limb!
Let's not lose sight of the fact that this is an oral drug tho! WOOHOO!!!

Tysabri is supposedly the most aggressive drug on the market and does GREAT things for patients. Has it done GREAT things for me? no, not really, altho it is working because there's been no disease progression, so it's done "GOOD" things for me, but i wouldn't say "GREAT"
We've finally found a vein that doesn't mind being stuck and giving up the blood, so the procedure is not as dreadful as it used to be
let's not lose sight of that higher risk of brain infection tho. Great! just friggin great!

Decisions...decisions. what to do, what to do? I cyah lie, i think i kinda want to stay on Tysabri but...

Oye!

2011-12-02T16:01:00.001-05:00

Last Saturday I was at a party. I was sitting on my chair, looked around at everybody dancing up a storm, enjoying themselves and said to myself, "Now, why the fcuk are u really here?"

I enjoyed myself and got bouff when i brought it up after, but at the time, i just couldn't help it :-(

High Maintenance

2011-11-25T16:33:00.001-05:00

in my last post, i mentioned that i've become very "high maintenance" ...it's so true - it actually is a lil disgusting. Everything has to be just right for me to participate.

we going to Carnival somewhere; we hadda know bandleaders or DJs so that i can get a spot on d truck - I cyah be on the road
we going to fete somewhere, we either walking with a chair or (again) know the promoters so that a chair is organised for me in the party
i want to buy a shoe, i have to be mindful of the heel (i almost need a cobbler to make my shoe special, because who knows if i'll ever find what i need)
i have to go anywhere, i need to be mindful of parking - how long is the walk from the car to the door blah blah blah

and the list can go on...Now, don't get me wrong i am grateful that we know promoters/band leaders/djs etc, because it allows me to continue doing the things that i like and enjoy life as normal and they all know the situation, so nobody gives us a hard time. On the flip side there are perks...i sail thru the security line at the airport, board the plane before everybody else, have prime parking but that's beside the point for this post.

the tickets to Vegas are bought! woohoo!!! but of course, i have to think about being in Vegas (a walking city) in my condition (i almost didn't want to go at first). So...

I had to call the hotel to see if they have rooms with walk in showers - i discovered (not the hard way - thank God) that i would prefer NOT to climb into a tub to take a shower. That never occurred to me until recently because i don't have a tub in my bathroom; i have a walk in shower.
the last casino i went to had scooters for rent, so i figured Vegas MUST also have them. but then i started thinking...if i'm there for a few days, i don't want to have to rent it out daily (it'll be too costly!) - what if there is a long term kinda thing available? and wouldn't u know it? there is - so i'll be good for my entire stay

My point is...i can't really afford do things on a whim anymore. I really have to stop and think things thru, make sure the conditions are just right, make sure all my bases are covered so that i'll be ok before getting into anything.

it sucks! but it is what it is...

Yesterday

2011-11-25T14:43:00.001-05:00

How fitting that yesterday was Thanksgiving (here in the US) and the 2nd anniversary of this blog. Amongst the many other things that i'm thankful for, i am extremely thankful for all of you - my readers, my supporters (virtual, across the miles and here with me) and all those who've offered me a helping hand over the years.

BIG, BIG THANKS TO U ALL !!!!

The Oddest Thing

2011-11-25T14:02:00.001-05:00

so...

i can't walk in heels but i can't walk in flats either!! WTF?!?!?

if i try to walk in heels, i most probably will break my ass - don't know that for sure but i'm willing to bet my very last dollar that it will happen. These days, walking in flats too (no heel whatsoever or barefoot) is 1 of the most difficult things that i have to do - I haven't fallen yet but i won't be surprised if it's in the cards. In fact, when i walk barefoot, i tend to walk on tippytoe to compensate - it's just the oddest thing. I haven't figured out why that is altho i think that maybe it has to do with my sometimes dragging feet? who knows...

I'm highly upset now because the pair of boots i bought last year (when i came to terms with the fact that heels were a thing of the past) are flat - I've worn them once or twice and i cant walk in them either so i have to give them away (and they are so cool too). Having MS has made me very high maintenance. Everything has to be just so or just right for me to participate/handle/be part of. When i go shopping for shoes now, they have to have the perfect heel so i can walk in them; can't be too flat, can't be too hight, can't be too narrow, can't be too wide - steups!

just a pain in the ass if you ask me!

Nothing to Talk About

2011-11-21T18:25:00.001-05:00

It used to be that i would panic when i didn't have anything to write about. in those days, i used to publish every day without fail. I'm a little different now - i don't panic, i think of it as "woohoo, things are stable" or at least i don't have anything interesting to share...it kinda bugs me a little, because i don't want anyone to lose interest, but i really don't have anything of note going on...hmmmm.

Anyhoo, i had my 1st of the 3 month MRI rotation on Friday and i'll either give MSCA a call or wait until i go to my neurologist in 2 weeks to get the results. One of the things that you have to do when you get an MRI is remove all steel (jewelry included). I have a few piercings and 1 is relatively new, so i didn't want to take out the earring. i called the piercing place to see if i could buy glass inserts and the chick told me that titanium (all their earrings are made of it) is actually safe for MRIs so no need for glass. I went into the chamber and even though i'd been assured that everything would be okay, i had visions of all my earrings flying out my head and ripping my ears apart. of course that did not happen! 4 or 5 MRIs in and i still sometimes have visions of my older fillings flying out too (i know, i'm a jackass).

Anyway, thanksgiving is coming up and as i mentioned in my last post, it's going to be different this year, i'll actually be going to someone's house - looking forward to it. I hope all those who celebrate it have a GREAT time with family/friends/whomever you spend it with. I know that i'll be having a GREAT weekend myself.

hmmmm...Am I Weird?

2011-11-09T17:54:00.001-05:00

I've been told in the past that i have a stone where my heart should be. I'm not the most emotional person u'll ever meet and I'm very practical - most times. Anyhoo, I was reading something yesterday and it occurred to me that i didn't cry when my doctor (at the time) told me that i had MS - didn't the days after either. I don't remember how i told everyone around me nor their reactions...did anyone cry? hell if i know.

in fact, i didn't cry until almost a year later on GA Avenue in DC when i couldn't play mas! i wasn't crying because i had MS per se, but because i couldn't enjoy something that i'd been doing for YEARS! funnily enough...i tear up every time i'm anywhere near the parade for Carnival (miami, DC); hence the reason i will not be going home ever again for Carnival.

those are the only times that tears have actually flowed...yeah, i have the occasional bad day/sad time but i've never been truly upset about having MS. I'm afraid of what might be in store for the future and a few other things, but upset? no...i can't do anything about it - NOTHING at all, so y waste time to get upset.

does that make me weird/stupid/all those kinds of words? don't know, but it is what it is...

The Holidays

2011-11-08T11:34:00.000-05:00

so it's that time of year...i used to look forward to Thanksgiving and Christmas - i loved them both (doh mind it's the WORST season of the year) until MS reared its ugly head and i can't enjoy cooking for thanksgiving or shopping for Christmas! For some reason, both holidays are a HUGE deal in Tucker. We always have a larger than life spread on the table for thanksgiving (u'd swear we grew up celebrating it) and a tree with millions of gifts (most of them for us) under it at Christmas.

well MS has spoiled them both for me. I can't stand and cook the dishes i have responsibility for and shopping online is just no fun for me! and as usual, i am jealous of all the people out there who have no problems...

this year, i have to find someone's else's house to storm for food (no fault of the MS) and we are hopeful that Christmas will find us in Vegas (if that's not something to look forward to, I don't know what is) :-)

Happy Halloween

2011-10-31T11:51:00.000-04:00

i love Halloween...it's the 2nd of 2 American things that i have completely embraced; we don't do anything for halloween at home! Every year, i dress in costume and have somewhere to go. In fact, last was the 1st year since i've started dressing up that i didn't do anything and it was somewhat depressing. So this year, a friend was throwing a party and i found out about it in Sept (or so) so WOOHOO i get to dress up. As the time drew nearer, i realized that i wasn't as excited as i normally get and about 3 weeks before the party, it hit me that:

i really wasn't that interested in going to the party and
75% of the fun is going to Party City (or wherever) to look for the perfect costume (or idea)...shopping online is not so much fun for me

fast forward 1 week prior and all of a sudden, the Halloween Spirit hit me in the gut! I want to go the party AND i want a costume!

So since i have the cane, i figured i would incorporate it into the costume and go as a lady pimp or something, but the time i was done browsing, i decided on a Viking Princess. Ah...such a cute/sexy costume right? WRONG!!!! the damn thing came and as cute and hot as that model looked in hers, i looked RIDICULOUS in mine; the hat was too shallow, the dress was too big and it wasn't that nice chocalte-y colour either - it was more of a baby tootoo brown!!! the best thing in the costume bag were the boot covers! STEUPSSSSS!!!!! Of course, because i'd waited till a week prior, it was too late to do anything with the stupid ass thing! i still have it, in case anyone is in need of a Viking Princess costume

I was pissed! i still went to the party dressed as "woman with cane" and i had a good time, but i'm not going to fool around again next time :-)

Anyhoo, Happy Halloween to all!!

Finally

2011-10-28T08:54:00.000-04:00

I'm finally back to "normal" after Miami. If i have to b honest, i was a lil scared for a while there. It was so strange...so good in Miami and then i come back here and was a completely different person. I was so shaky (much shakier than normal) and unsure of myself, i was even afraid to go anywhere on my own (so i didn't). i was hopeful that my body was just rejuvenating itself/getting over a hectic weekend, but at the same time there was a thought in the back of my mind that Miami was my last hurrah! the end of the good times and i'd have to make adjustments. Was I upset that i'd gone and had such a good time? HELL NO, but...

Well everything is back to "normal" now. Life as i know it can go on...

In other news...

2011-10-25T10:43:00.000-04:00

i think we've finally found a winner! After 19 months of trying, we have finally found the vein that works. For the past 3 infusions, i've only gotten stuck once and the nurses have had NO problems filling up 3 vials of blood. I don't like to use the normal vein where everybody goes (inside the elbow) because that would mean that i'd have to keep my arm straight for 2 hrs (not happening!)...so they always have to go look for other veins to use.

Well this one on the inside of my left wrist is a winner - even I can see it sometimes!!! better late than never i s'pose.

JCV

2011-10-24T10:29:00.001-04:00

well...i tested positive. positive to the JCV antibody test...More decisions to make...

what does it mean? I was exposed to the JC Virus at some point in my life (not uncommon). the JC Virus doesn't normally cause any disease in people but someone taking Tysabri is at a higher risk for developing PML (the brain infection) if they have been exposed to the virus. The percentage of patients on Tysabri who develop PML is small, but i am still in that high risk category. Since i tested positive, an MRI will need to be done every 3 months as opposed to 6. That, coupled with the fact that every 4 weeks when i go in for my infusion i either see a doctor or nurse practitioner for a mini exam is the plan for increased monitoring and early detection. If i exhibit any symptoms of PML, i will be taken off of it and then i'll need to start battling the infection.

At this point, life goes on as normal. I have an MRI scheduled next month and i go to my neurologist in Dec. At that point, i will decide whether to stay on Tysabri (is it worth the risk?) or move on to something else. I'll say 1 thing right here, right now. I CANNOT go back to injecting myself, so...

After getting the results and everything sinking in, i had some "why me" thoughts and sadness started creeping in, but i quickly pushed them to the side and moved on.

ARGH!!! did i mention that i hate MS?? i do!

oh boy...

2011-10-21T08:23:00.002-04:00

today is the day that i should find out the results of my JVC virus antibodies test. that's the virus that causes the brain infection when u're on Tysabri. The virus is in all of us, but it's dormant - Tysabri wakes it up! (of course). anyhow,

if the test is positive and the antibodies are present, more decisions will need to be made...do i stay on Tysabri with a greater chance of developing the brain infection? they will monitor me by doing an MRI every 3 months instead of 6...do i switch to yet another disease modifying drug?
if the test is negative, life goes on as usual.

of course, me being me, i have a feeling that the test is positive. I can't help it sometimes, i tend to expect the worst and be pleasantly surprised when things work out well.

oh well...stay tuned!

I misspoke! It's the JCV or JC Virus...

Stacey Strikes Again

2011-10-17T17:02:00.001-04:00

I love yoga! unfortunately, it falls into that category of "things i can't really do properly anymore" so i have to find alternatives. Well i found out about something called adaptive yoga (it's amazing how much i know exists out there now that i'm in the situation i'm in). it's also referred to as Therapeutic Yoga and is essentially, yoga practice that's adapted to people with injuries, disabilities etc so it may be practised in chairs, with props - u get the idea.

So finally found a class that takes place after hours so i can attend and went to the 1st class last week Tuesday. It was a good class and i'll keep going (besides which it's free so u can't beat that with a bat!) For those who've never practised yoga before, the atmosphere is always very quiet, serene, peaceful, relaxing (all those kind of words). At the very end of the class, the instructor will get u into a zen-like place and u take deep breaths for a while before the class is dismissed.

so on Tuesday we are in this zen-like place, taking deep breaths innnnnnn and oooouuuut, innnnn and oooouuuut and then BRAP, BRAP, BRAP, BRAP, here comes my (noise pollution) alarm. It was 8:00 - time for my medication! Imagine my horror (altho i couldn't help laugh to myself)

Of course, my phone was in my handbag, so i had to dig for it and take it out, so it only got louder and more obnoxious! Did i mention that it was a small room with about 8 students????

Ahhh....more happy times!

Perspectives

2011-10-14T11:48:00.001-04:00

hmph!

went down to Miami and is pace right thru and had NO drama/incidents. Came back here and trying to get back to normal and i've fallen twice already since Tuesday!

FL Stories

2011-10-13T16:04:00.002-04:00

So like i said, went down to Miami last week Wednesday and had a whale of a time...partied like it was 1999 and just plain ole had a time. I didn't go to all the fetes that the crew went to just because i didn't want to chance anything/push my luck, altho truth be told, i did so well, i think i may have been ok.

Allowances were also made for me on some occasions, because we knew some of the promoters and were allowed special access/privileges. On Thursday nite, K and I were the 1st 2 patrons on the boat - i was allowed to go on before the masses - quite cool. so we went to a party on the Friday nite and there were some steep steps to enter. we asked for an elevator and found out that it was on the other side of the building, so it was decided that S and J would carry me up the steps just to make it easier for me. I probably did half and half that nite (1/2 the time sitting and 1/2 the time on my feet)...it was a free drinks party and we were quite close to the bar, but all nite long, i was brought drinks, so i didn't have to walk back and forth. At some point in the nite, i was sitting and someone came up to me and said, "U had a special ticket? everyday bringing drinks for u all nite long!" i laughed and went on with my nite...at the end, AC took me down the steps on his own. Overheard by A on her way down, "buh who d hell is that? they take her up in the party, they bring her down from the party and bringing her drinks all nite!" A snickered and continued on her way. HAHAHA!!

Everyone went to a Saturday breakfast fete after Friday nite's bash but good thing i didn't go to that because i heard that they had to stand in line for 2 hrs before they got in.

I was the last one to get on the boat on Saturday - after all the masses but that was also good because i didn't have to deal with any crowd or drama. Now while on the boat, even though i was standing the whole time, best believe that i was holding on to a railing...i wasnt trying to tempt faith by standing up in the middle while the boat was sailing - that's for damn sure. LOL!! We didn't do the parade this year and so that was the end of any big events. there were 2 house limes Sunday and Monday so there was no issue then.

All in all, i really had a good time down there (as usual) and can't wait until next year already :-)

will put up a few pictures later on...

My oh My

2011-10-12T16:07:00.002-04:00

Came back yesterday from Miami carnival...it's very fitting that my last post was about how well i walk/am when i'm off or on the weekends. I was so good in Miami!!!! for the entire week that i was there!

went on 2 boatrides and stood up "wining (okay as best i could)" for the duration (at least 4 hrs) of both and then was able to walk off the boats (albeit a little slower than normal - if that is even possible :-) ) after them both
walked around all day (some of the days) and still went out later the nite, without too much issue

This morning i wake up to get ready for work and...whoa! what the heck? is this the same person??? geezanages. can a gal get a break?

Things that Make U Go "hmmmm'

2011-10-04T16:17:00.001-04:00

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!

heeheehee

2011-09-27T13:25:00.001-04:00

Every now and again, i would go back and read old posts and the other day, i came across this one, Not Sold. i wrote that soon after i'd gotten the cane. well, HAH!! once again, it's funny how ur perspective on things can change as time goes by.

About 2 weeks ago, my manager asked me if i'm using my cane and my response was, "oh yes i am! I can't imagine going anywhere without it; i think i'd be like a fish out of water without it!"

These days i can safely say without a doubt that it helps me (unlike what i wrote in that post). i really shudder at the thought of going anywhere without it. It used to be that i would kinda feel self conscious of the fact that i was walking with a cane. Now??? u couldn't pay me to walk without it!

Whether it's a good or bad thing, the cane has become my "third leg" and unfortunately for me, i need 3 to get around!

Y Can't that B Me II

2011-09-22T14:07:00.004-04:00

i am envious when I see people exercising!

Again, who woulda thunk it!?!? Anyone who knows me, knows just how much i used to HATE the gym and NEVER really looked forward to working out. In fact, when i was dancing, i was happiest because that alone is a workout and because i was having a good time doing it, i never really thought of dance as a workout per se.

Even when my neuro told me (years ago) that exercise is important while managing MS, i still needed some type of motivation and couldn't get it together to get started on some sort of regular program. At some point, i realized that the only thing that would get me going and keep at it consistently was to hire a personal trainer.

These days, I've actually gotten to a point where i like working out with Reggie (*gasp*, did i just say that out loud???). I go to a small gym, not a Golds, Ballys type place. There are about 4 or 5 studios in which the trainer and the client workout together one on one. The studios are only used by 1 client at a time, so u really have the trainer's undivided attention for the time that you're there. Even though the place is used/setup like that, sometimes u can see what others might be doing if u're there at the same time. While i do get my money's worth, I have limitations so there's a whole lotta shit that i can't do. well, when i see other people doing such things, i look at them and again think, "*sigh*, wish i could do that!" of course, some of the exercises, i could try...but then i'd probably spend the entire 45 mins just to do 1 rep!!! (may not be a good idea. SO not a good use of my money).

*sigh*

just another 1 of those things...

sigh Now Y Can't that B Me

2011-09-20T13:41:00.001-04:00

it's amazing how things happen/change in ur life and it takes on new meaning/you gain new perspectives.

I've been going for infusions for a almost a year and a half now and every time i go, it's a fight with my veins. In my wildest dreams, i never thought that would be an issue because every time i went to give blood prior to my starting the infusions, i never had any problems.

i'm a nightmare to the nurses,
My veins are small
My veins tend to roll; they don't ever want to come up to the surface of my skin to make anything easy
Its always a bet - how many times will i get stuck this time around?

In light of all that, these days when i see someone with nice bulging veins i look at them with pure envy! i saw a fella in the barber shop on Saturday and I swear his veins were a big as a drinking straw!! I always think, "now y couldn't that be me"??? I know that i don't know everyone's situation...but i always think, "what a waste of a nice vein...bet u don't have to go for an infusion every 4 weeks!"

Apart from the obvious, guess which hand is mine!

I think i have good ones in my feet, but alas they won't use the foot. so i just have to look and lust after the big veins when i see them. Who woulda thunk that there would come a time when i would look at people and the 1st thing i notice about them is the size of their VEINS!!!

All Bruised Up

2011-09-19T18:16:00.000-04:00

so i fell down yesterday. I just wrote about falling last week and i fell yesterday - it's almost like i called it on myself.

Anyhoo, it was a good"ish" fall. I actually fell hard on concrete on my knees in the parking lot in front my house. i thought that my knees would be in a mess, but it turns out that they are okay...the tops of my feet however is another story. Because of how i fell, i was in a precarious position against the car and had to drag my (upside down) feet to get out of it. Ended up with 3 whiteman bruises the top of my right foot. I was carrying a Target bag with some stuff and all the stuff stayed in the bag - so all in all a good fall, nothing to complain or write home about.

happy times!

that Fear of Falling

2011-09-15T17:21:00.000-04:00

Funny - falling is no longer a big fear of mine really; the fear is now the effect of the fall. Unfortunately, falling has become a part of my life...when i fall, i hope for a "good" fall - no injuries, no pain, nothing; I can laugh, get up and go on with my life. Now, don't get me wrong, of course i don't want to fall and i always try to stop it from happening, but when it does, i brace myself and hope for the best!

The other day i was working out with Reggie, my personal trainer who's really good with me and understands that i need extra help to get from here to there, most times. He let me go for a brief second to go put away some weights and i felt myself starting to topple over. A few loud noises/half screams and he was right there at my side, even though it turned out to be a false alarm and i was able to "catch" myself.

Nite before last, I said to G, as i was making my way up the 1st flight of stairs, "good thing we live in this house"...she didn't understand because of course at the time i was actually making my way up the 1001 steps that we have. I explained...the house in which we lived prior also had steps of course, but it's the steps leading up to the house that would have been a bitch for me. There were only about 6 and they were wide BUT there was no railing AND it was flanked by those prickly shrubs ON BOTH SIDES. I have a vision in my head of falling off those steps and into the bush - the picker bush - ACK!!! (it actually makes me feel a lil ill)

thank goodness it will never happen as i have absolutely no reason to ever go back to that house but...

Walking up and Down the Steps

2011-09-09T09:50:00.005-04:00

i prefer to walk up or down 5000 steps than walk on any incline - regardless of how steep. it's just easier for me - i may take forever and of course it does a job on the legs but it's easier - in my perfect world, everywhere would be FLAT! i've mentioned before that i live in a 3 story townhouse; if i could have seen into the future, we would have bought a flat house, but say wha. Normally, when i go down, i'm down to stay and when i go back up, i'm up to stay - there's no climbing up and down the steps throughout the day. My nightly routine is to put the next day's tablets in my bag when i'm up in my room because forgetting the pills (UPSTAIRS on the 3rd floor) is NOT an option especially since i work on the ground floor.

Well yesterday morning, G and I were making breakfast (kitchen is in the middle), my alarm went off to take the 8am pills and i took the "thursday" container out of my bag and placed them on the table. I sat down to eat breakfast and she left for work. I picked up the container to take the pills and at that point, i realized that it was empty - it was the Wednesday container. UGH!!! Funnily enuf, i'd had a nagging feeling of something not being right on my mind as she was walking out; if i'd only known then what i eventually found out, i would have asked her to go for the pills. For a fleeting moment, i thought about leaving them upstairs and suffering thru the day, but good sense prevailed and i decided to make the trek up to my bedroom.

i think the trek UP the steps then back DOWN again and DOWN to my office took me about 10 mins - ugh!! and of course i was shaky for most of the day after that. MS SUCKS!

Of course this morning, she took a quick glance in the container to make sure that there were pills in it.

Falling...again - as usual!

2011-09-07T15:54:00.001-04:00

i've mentioned before that anytime i fall, i laugh hysterically...especially when i realize that it's a "good fall" - no injuries, pain etc, jes a plain ole fall. Is that normal? is it smart? maybe not, but it is what it is and that's how i react. not sure if it's because i haven't been in a completely embarrassing situation or what but it only occurred to me on Saturday nite that other people may not find the humour.

I was actually holding on to someone as we walked out of a house and quite frankly, i don't even think that we were walking at that moment. Not sure what happened, but i just started leaning and eventually fell and of course, i started laughing. CQ, however, was lil mad that it happened "on his watch" - he wasn't laughing! i tried to tell him that it was okay - no worries; Lord knows that i fall all the time and am used to it, but he wasn't hearing it. The same thing happened a few weeks ago with another friend who was helping me with something...i kept falling and she kept saying, "she keeps laughing, but i really am trying to help." I knew she was, but i probably wasn't helping the situation by laughing like a jackass all the time.

Maybe deep down inside, i'm actually embarrassed and just need to deal with it so i do so by laughing? who knows...

Maybe i need to rethink my reaction because it's not always as funny to everyone else as it is to me...not making any promises on that right now, but it is something that i think i need to think about/be aware of. I'm not going thru this alone, so i do have to take other people's feelings into consideration.

Needing Assistance

2011-08-29T15:27:00.001-04:00

I've mentioned sometime before that i will accept assistance even when i don't need it sometimes. I figure if someone offers to help me, i'll take it. There are times however, when i actually could do with a hand and will ask for it - ain't no shame in my game (anymore) at those times. It's those times when that left leg gets so stiff that i just can't bend it (it's amazing, but it happens) or if i feel really weak and just can't move it on my own. Oftentimes it will happen when i'm getting into or out of a car. Getting in, I would plant my ass on the seat and then cannot swing my legs in - the other day, i discovered a way to "tuck and roll" into the car in those times - not very ladylike and only to be used when absolutely necessary.

So 1 day, we were going somewhere and K was driving. She drives an Explorer - that thank goodness, unlike big black (J's Tundra) has a step ladder so getting in is a breeze. Well that day, no matter how hard i tried i couldn't get in the car. i could step up on the ladder, but not get in - try as i might, it jes wasn't working- it was a while ago, i really don't remember what was happening. I asked her for help so she did but it made no difference, i still couldn't get in. A few seconds later, G come downstairs and seeing what was going on said, "K! what u are doing is not going to do anything. U have to take that leg and manhandle it, use some elbow grease and strength and force it to do what you need it to do." In 2 2s we were on our way...last week, a friend was visiting and again, i needed some help - same thing essentially happened.

G is used to me and my "issues". Others are aware of my situation but are not always involved with the kind of help i might need. It's always funny to us when we have to school people on the way to (man)handle me if necessary. The good news is that i have no pain so using force is not going to break or hurt me and i don't get embarrassed by what needs to be done, so we just get it done and be on our way.

No time to waste round here!

#17!

2011-08-27T19:42:00.000-04:00

whoa! time waits on NOONE!

I went for my 17th infusion on Friday - who woulda thunk it; I can't believe it's been that long. It was a great one too - i got stuck only once, the blood GUSHED out of my vein (unlike the usual "molasses going UPhill") and the medication took only 20 mins as opposed to an hour to flow into my body - go figure; i chalked it up as "just 1 of dem tings". I stayed a little longer than normal to be observed afterward because 20 mins was so out of the ordinary.

Anyhoo, so i normally see a doctor or a nurse practioner before going in for the infusion and 1 of the questions they always ask is how things have been in the past month and if i've noticed any new neurological symptoms (I CANNOT spell that word on the 1st try - EVER). so i told Beverly (the nurse practitioner) about my off and on bladder issues. She asked me if it was new to me and i told her that it has happened before, but i never thought that it was MS related. She confirmed for sure that it was and told me that if i was interested, there were drugs that could be prescribed to help. Before i could say anything, she went on to tell me that the drugs prescribed sometimes can make it harder to pee for some patients.

now, i didn't want the drugs in the 1st place but after she told me that, there was no way i was going to say yes. What the?!?!?! can anyone tell me why it is that the drugs prescribed that will help one to pee all the way and completely empty the bladder will actually make it harder to pee at all????? There is something wrong with that statement - it makes no kinda sense - AT ALL; not in any language!!!! Who the hell are these researchers, drug manufacturers, scientists...boy would i like to have word with them!

Anyway, I asked beverly if my going along without doing anything is a problem and she said no - thank God. As with everything MS related, I will keep an eye on it and if it starts getting worse or becoming a problem, i will deal with it then...no need getting my panties all in a bunch for nothing at this point.

Boat Rides

2011-08-26T09:32:00.001-04:00

So...

boatride in NY was standing room only and we know how well i do that! good thing i didn't go
boatride in ATL was perfect - good thing i went!!!

App there were 85 people on the boat and as A put it, if there were 86 people, it would have been too many. We snuck all our drinks onto the boat, we had room to get on bad and thoroughly enjoy ourselves.

a few pictures....

oh, That Positive Attitude!!

2011-08-18T09:47:00.003-04:00

Many people have told me, "love your attitude, u're dealing with this really well" etc. Hell, i wrote about it myself a little while ago - i'm coping with this disease the best i know how...but I can't help but wonder tho, "Am i being naive/just plain stupid?" i'm not normally 1 to wear rose coloured glasses and see life as a bunch of roses, but i refuse to let My Situation get me down - don't think my friends will let it happen anyway.

Reading about other people's experiences (what i may have to "look forward" to) is sometimes depressing/alarming/scary. It makes me more determined to fight the shit and fight it hard, but i can't help but think "is my fighting in vain?" - i'm going to PT, taking all these drugs, working out...is it all for naught?

sometimes i want to stop taking the drugs, of course when i miss a dose i swear i can tell the difference.
I will save so much money if i give up my personal trainer - but then I cannot go to a regular gym, do anything on my own and try to walk out of there because that is just a recipe for disaster
My PT appts. are at 7:30am so that work is not affected (my manager gives me enuf slack as it is - so i'm trying not to take advantage of that) so of course i have to wake up at the crack of dawn to get there on time...fun fun - not so much!!

Would all of that stop the MS in its tracks? Will they dissuade it from completely consuming me? How much (if at all) will/could doing all those things slow the progression of the disease? will my +ve attitude turn into a -ve one or just how long will all this positivity last?

I continue to have so many fears of what the future could hold, what could possibly happen on any given day when i wake up? what is the MS's plan?

so many questions with so few answers.

MS Really is Bad

2011-08-15T12:08:00.009-04:00

One of the things that helped me come to terms with having MS was that "it's not the worst thing that could have happened"...I'm beginning to rethink that...MS is pretty darn bad...okay, maybe it isn't the worst, but it's up there with the rest of the bad things. i think that what makes it worse than some other diseases is that the cause is unknown, it's unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control. Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around - not necessarily because i have to pee, but because there is a bathroom i don't mind using available. I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass - there's no holding it for me!

I noticed that every now and again something would happen to me so i said to G, "you ever had to pee, used the bathroom and then u notice after you're done and u leave the bathroom (mind u) that, "shit! i have to go again?" Of course she said no and as usual, we moved on...i chalked it up to one of those things that just happens sometimes i guess. I subscribe to the MS Society's monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients' not being able to empty their bladders and it hit me, "what the?!?!?! i guess that's what i've been experiencing" i'd never thought that it was the MS - for once i didn't blame it and it actually is to blame. When it happens, it's only at nite - i drink so much water (i always say, the only things i drink are water and alcohol, i don't mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite - well when i do use the bathroom and get back into bed to go back to sleep, that's when it give me a nudge and says, "eh eh...we not done yet" so i have to get back out of the bed and head back to the bathroom.

I've had conversations with the MS, "i mean, do u really think that it's necessary to put me thru this???? i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that "oh by theway, u're not done yet" so i have to start the whole bloody process al over AGAIN!!!" i mean...really?!??!?! UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don't get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn't the worst, but it sure is damn bad!!

GRRRRRR!!!

To Do or Not To Do...

2011-08-09T14:08:00.002-04:00

1/2 of dealing with MS (and i suspect any chronic disease) really is about making good, well informed decisions. July was a blur to me...i was on vacation, OB was here, I was limin up a storm right thru. I blinked twice and it was over - time really does fly when u're having fun. Anyhoo, so this past weekend, i decided i wasn't going to do ANYTHING! i was going to keep my ass quiet for the 1st time in a month and just stay home and relax...try to get over July. Of course, errands and normal Saturday stuff doesn't count, so when i finally woke up on Saturday, i jumped in the car and moseyed on down to the barber shop - i have to get my hair cut every 2 weeks, or i'm a stark, raving, mad woman.

The shop i go to is not close but i've been going to this 1 chick since 1995 and she does a fantastic job, so i'm not about to go in search of another barber. The shop is in a mall; mind you, not the nicest mall around, but for whatever reason, whenever i go down there, it is ALWAYS PACKED! On Saturday, I actually had to park the farthest away i've ever parked and was actually questioning whether or not i should bother - but again, i'm a stark, staring, mad woman, so i pushed through. Men give women a hard time about going to the hair salon and how long it takes, but i swear it's no different in a barber shop. they get their beards groomed, their mustaches trimmed - it's not as long a process, but it takes quite some time and Miriam (my barber) is quite good so there are always quite a few people in front of me on a Saturday - unless i go at the crack of dawn and that eh happenin! Well even though i was just sitting waiting (i swear it was about 2 hrs on Sat), i was ah lil tired by the time my turn rolled around. She knows about the MS and for some reason, that day she asked me where i'd parked. When i told her, she said that she'd get someone to go get the car for me - i could have jumped into her arms and kissed her! The thought of having to walk back all that way in the 9something degree heat was making me even MORE tired! I've learned to accept help sometimes even when i really don't need it!

I left the barber shop and went to lunch - a gal has to eat - especially when it's at Eclipse. As i was leaving Eclipse, i was still feeling a little tired, but had to go get the brows done...so i headed there. Well i got there, got out the car, took 2 1/2 steps toward the place and decided that it wasn't worth it...nice arched eyebrows vs bussin my ass in the place because i was tired? i chose to not chance bussin my ass. i was also supposed to make 1 more turn that evening - instead i entered my front door and set my alarm for the night because i knew i wasn't going another place for the day, not even if they paid me!

P.S. the eyebrows are still not done- ugh! maybe i'll go tomorrow.

Asshole Drivers

2011-08-03T10:40:00.004-04:00

Indulge me...this has nothing to do with MS.

I've owned 3 1/2 cars - i say 1/2 because i didn't pay for Betsey but C&I shared her.

Stax 1 was written off - i wasn't driving.
Stax 2 was hit by an asshole who reversed into it while it was parked.
Stax 3 was hit by another asshole who couldn't drive and reversed into the parked car and then was bol'face enuf to tell me that i mustn't park in front my house (did i mention that said asshole didn't even live in the complex???)

So yesterday, G was stopped at an intersection waiting to pull out when a jackass drove right into us. When he came out the car, he said, "where did u come from? where were u?" uhmm...right here jackass. Stopped in front of you!!!

I have NO patience for idiot drivers - NONE!! how, how, how do u NOT see a car that is stopped in front of u????? in times like these it's good when G is involved because a blood vessel usually bursts in my head and acc to her, I "was coming out of the car swinging!". she's much more diplomatic and reserved than i. I think that what really got me going is that the man hit us, i looked back and our eyes made 4 and then as if to say "bite me", he pushed the car forward a bit like he was trying to move us out of the way. I was on my way to work out and was really looking forward to it to, so that got me going too!

Anyhoo, we are both ok...he got a ticket (woohoo LOL) and truth be told the damage is not as bad as i originally thought. Of course, now i just have to deal with the hassle of getting it fixed.

oh the drama...

HMPH!!!

2011-07-27T17:29:00.011-04:00

There is an upcoming boatride in NY to which i'd planned on going. I haven't gone anywhere for the summer and i've actually been thinking that i haven't been to NY in a long time, so what the hell - this was a perfect opportunity to kill about 6 stones at once. Now truth be told, i've been hemming and hawing about going NY because it's such a "walking" city that i am a lil afraid of going - but a few friends i've spoken to up there say, "doh worry - we will work around that; daiz no problem"...i've still been a little hesitant.

I'll only mention 1 "name" in the following story...

so G comes home one day and says, "i got a call from person and a good point was brought up, i suppose...maybe u shouldn't go on the boatride since we aren't all going...suppose something were to happen on the boat...getting u off may be a problem..." now, i never gave this any thought, but it is a valid point...i don't put myself in situations that i know i (or my friends) may not be able to handle, but something like this? no....never thought that IF something were to happen on the boat....then she said, "it's ur call - whatever u decide to do is fine. I asked person why they called me and not u, but there was no real reason, anyway u'll get a call tonite" i said to myself, "self...what are the odds of something happening on the boat; it's a valid point....hmmm" we continued talking and laughed at a few things and moved on...i continued looking for tickets.

2 days later i got a text from the person that said, "we were discussing it and we think that the boatride in ATL will be better for u to attend...call me". i read it, got pissed off and insulted instantly and in that moment, i decided "Fuck it, i'm not going". i responded right away with, "it's okay - i not going". person responded with, "what? am i not worth a call to discuss?" At the time, i wasn't in the mood.

Now...i cyah tell a lie...my reaction surprised me - i'm not usually one to get pissed off at alot of things, but i really was pissed that day. I think it was the "we" in the text message that did it because i was thinking "what the???!!!???" I'M the one who's sick not anyone else, so why not discuss with me - i didn't care who the "WE" was. I also got pissed because I have MS and i can't help it nor can i do a whole lot about it so again - discuss with ME not WE 0 i felt like decisions were being made for me!!! Well i didn't call the person until about 2 days later - after i'd cooled down, we talked about it and they tried to justify it, but quite frankly, i wasn't interested. we have moved on from the incident and i hope that i don't ever have to be in a situation like that again because it really wasn't a good feeling - at least not for me.

this is not to make anyone feel bad or anything like that, the person already knows how i felt and as usual i'm just telling my MS story.

+ve Attitude

2011-07-20T11:31:00.003-04:00

I'm done with my pity party...i'm extremely grateful that i'm stable. improvement would be nice, but stability is good news!

G and I had dinner with 2 friends a couple weeks ago. P was running late so we were limin with H and having a good time for his birthday. All of a sudden he said to me, "U are 1 of the srongest people i know" to which i responded, "why?". I think i was honestly a little confused because i so try not to make the MS the center of anything. The conversation went on and he continued that i am always smiling, never letting anything get me down and he thinks that my attitude speaks volumes...everntually i said thank you and we moved on...

an hour or so later, P showed up...good times, lots of laughter, drinks, good food and he says, "u know u are the most positive person i know". it was out of left field (at least i thought it was) and he too commented on how i'm always smiling, organising a good time, limin hard and just generally very positive in spite of everything.

it's always interesting and "warm and fuzzy" to me when people tell me things like that. i don't think of myself as a strong person nor do i think that i'm very positive in fact a more cynical pessimist u'll not find. I have come to realize that i am actually dealing with the MS in the best way possible and in general i don't let it drag me down. Back in the days when i would say "screw u MS" and do things that i shouldn't, the bad days might have reared their ugly heads more, but now that i know my limitations and don't do anything stupid, they are few and far between.

so...stability is GREAT - improvement will be greatER and i'll shout it from the rooftops, but until then I'll take stability any day!!

PT Assessment

2011-07-15T17:09:00.002-04:00

well...my PT did an assessment of me this morning - it's been 90 days since i've started going...

i didn't test worse than i did when she did the initial evaluation (great news, i know!), but shit, is it really too much to ask to see an improvement (anywhere)???? On the scoring scale she uses, i believe i was 1 point better - in their book it must be at least 5 points for them to say, "yes, she's improved!"...so as far as she is concerned, i'm stable - good news, yeah, i know but shit! i don't think it's too much to ask to see something positive once in a while.

Dr.'s Visit

2011-07-13T17:38:00.005-04:00

It's been a while....i was on vacation last week - and what a great vacation it was!

anyhoo...so i went to my neuro yesterday for a regular follow up and nothing really to report. he confirmed that the MRI shows no progression (good news), he was disappointed that i haven't seen any improvement in my gait from the Tysabri (bad news). Also, the last time i was in to see him he said that they would draw blood to test for the the presence of the antibodies that causes the brain infection - well they never did that. I assumed that 1 of the vials drawn during 1 of my infusions was for it. I was wrong...so that test still needs to be done during my next infusion and i'll get the results beginning of October.

At that point, if the antibodies are present, i will be at higher risk for developing the infection and decisions will need to be made about whether to continue and tempt fate or discontinue and go on something else - decisions, decisions (as if it weren't bad enuf that i had to decide if i even wanted to start on Tysabri in the 1st place). If no antibodies present, i'm in good shape and can continue on Tysabri.

He asked me if it's working and i had to be honest and tell him that i had no clue. I suppose it's working because i have no additional lesions on my brain or spine and no exacerbations recently, but other than that, i can't be sure. I was hoping for a walking improvement - so many people say great things about Tysabri, "it's the most aggressive drug on the market...blah blah blah", but if you ask me, it's on the same level as all the other drugs available - oh well...wha yuh go do?

Skechers Shape Ups

2011-06-30T10:20:00.002-04:00

They apparently tome yuh backside, legs, calf muscles and while doing all that also improve your posture. My sneakers were laughing(on the sides) so they were on their way out and so i decided to a buy a pair of Skechers.

Well! Me eh know if they will actually do all of the above - that's not why i bought them. what i do know is that they actually have been forcing me to walk properly - heel to toe. My feet tend to drag alot so i don't always do the heel to toe action - in fact 1 of the things that my PT wants me to concentrate on is lifting my feet and walk heel to toe - even tho it may feel like i look weird. i think i have the heel to toe action because the sole of the shoe is curved (and soft - it claims to sumulate walking on sand) so if i didn't walk properly i might have problems(?). Hell if i know! I remember that Dee mentioned Skechers Tone Ups to me once before but I'd never done anything with that info.

Of course G and I went to the shoe store together to buy them because we both wanted to be sure that i could actually stand and walk in the damn things because of the shape. - when she saw me walking in the store, she said, "Yuh mean after all this time, all we had to do was buy some skechers?!?!?"

Well now here i am with the Shape Ups and i believe it was money well spent.

interesting

2011-06-22T17:14:00.001-04:00

i spoke to my doctor's nurse at the MSCA about something else today and mentioned to her that the claim was denied because the MRI was not pre-certified. When she heard that she seemed quite distressed (i could almost hear her tsktsk-ing) but then she looked in my file and found the APPROVAL from Aetna along with a reference number!

hmmmm...

Insurance Claims

2011-06-21T09:30:00.000-04:00

so i got a notice in the mail from Dekalb Medical which is where i went the last time i fell. the notice stated that it had been 30 days and they hadn't heard from Aetna as yet re:payment. The balance on the account was somewhere between $1500 and $2000 (for a CT Scan) but when i looked at the bottom line "Pay this amount" it was 0.00 so i breathed a little easier. well that prompted a call to Aetna to find out what the problem is!

First thing i did was check my claims online and sure enough i saw that it was denied - great! Anyhoo, so i made the call. Come to find out that it was denied because it wasn't pre-certified (approved) by Aetna...and then the lady said if it isn't pre-certified the only time it might be paid is if the doctor diagnoses it as an emergency. So i said, "well it was an emergency - i'd fallen and was in the ER." i was told that since i was coherent I should have told the ER nurse/doctor to make sure and pre-certify the scan before anything was performed. I told the woman that that was the dumbest thing i'd ever heard. I mean who has time to think about those issues when u are in an ER and worried about whether or not you'll come out in 1 piece or what they are going to tell is going on in that body.

while she was spouting off at the mouth, i continued looking at my claims and noticed yet another 1 was denied - the last MRI. i asked her about that one - and again she told me that it wasn't pre-certified. Now that, i'm mad about. The MSCA had no business doing it without it's being pre-certified - they ALWAYS do it. Now y they wouldn't do that this year? who knows!

On the upside, i haven't gotten any bills from either place (YET?!?)...so I haven't gotten my panties in a bunch or putting on my armour to go to battlle with anyone - YET!!!

June 17th

2011-06-21T09:29:00.001-04:00

oops...i missed Father's Day...hope all the fathers out there had a great day!

Obs, i know you had a great day!

Driving

2011-06-20T17:58:00.000-04:00

it took my PT to point this out for it to dawn on me...1 of the reasons that driving is not a problem is that i don't drive with my left foot - that damn weaker 1. Good thing that G cyah drive stick because that's the ONLY reason that i own an automatic car.

to test the theory, while i was driving home after i left her office, i tried to move my left foot as if i were using it to drive and it really wasn't as responsive/that easy to do. I'm sure it's not the only reason because even when both legs/feet want to act up, i can get behind the wheel and be okay but it definitely is a big factor - can't believe that it never occurred to me - DUH!

Reminders

2011-06-15T16:11:00.000-04:00

I have a small bump that hurts (feels sore) only when i press it. It's at the end of my left eyebrow - a constant reminder of my last fall (as if i'll ever forget)! it's very small; doesn't bother me at all, but it's there.

the other thing that i've noticed is that the skin under my eye is darker than usual, but only on some days. It's so weird...2 weekends ago, i washed my face and looked at myself and was actually kind of alarmed. When G saw me a few minutes after that i saw her watchin me hard and when i said, "what?"...she said, "ur eye". we both noticed on that day that it was darker than normal and since then i noticed it again this morning!

No rhyme or reason...go figure!!

i Knew It!

2011-06-13T17:14:00.002-04:00

Steups...they only did a cervical (my neck) MRI - they didn't do my spine...GRRRRR!!!!i knew it was just too good to be true. STEUPS!!!!! i don't know how they are going to handle the fact that it wasn't done yet. and it was actually the one i was looking forward to the most, since i know that i have scarring on my spine and was really curious to see what might be going on there since last year.

Anyhoo, so the neck one was good...it shows no sign of disease progression - that is great news!

so... that means, the brain is clear, the neck is clear and uncharacerstically of me, i'm thinking that the spine is clear too.

Motorized Carts

2011-06-10T14:44:00.000-04:00

I think i've mentioned sometime before that now when i go to the grocery i use a motorized cart to get around. I cyah bother fight with walking around with a cart and so i finally came to the realization that there's nothing wrong with using the carts - that's what they're there for. Those things are not as easy to manouver (sometimes they go much fast than u really want - esp when turning) as you'd think. I've gotten used to them (for the most part) now but it was a little touch and go at first.

Usually if u just let go of the controls, the thing would stop. I remember 1 time that wasn't happening...so i would let go of the controls and the cart would still keep going for just a few seconds before coming to a complete stop. Well by the time i was done and had to leave, i wasn't thinking about that and as i tried to look left and right for cars as i rolled out of Kroger (down the slight incline) i zoomed right into the street. Luckily i was able to steer it to the side so that i didn't have an accident with the car that was coming.

A few months ago, i was going to get some bananas. There was a man standing right at the banana stand, picking his bananas. I approached and realized that i could not make it into the tight space that was left (there were 2 other people there), so i patiently waited behind him for 1 of them to move before i went in. well between me and my motorized cart and all the other carts/people, i had to reverse to let someone out. Don't u know i used the forward control instead of the reverse and ended up jamming said man up against the banana stand. Naturally i was mortified and of course, i was a little flustered so it took me a few seconds longer than it should have to throw it into reverse (as i should have in the 1st place). If i'm not mistaken, i saw the woman who was with him, chuckling to herself (and trying hard to hide it) at the sight of him jammed up against the bananas - i also had to keep myself from laughing out loud after the mortification passed.

yet another example of a funny situation that i find myself in sometimes as a result of this disease - LOL!!

Cursing the MS Gods

2011-06-07T18:13:00.002-04:00

I spent all day cursing the MS gods. I have PT every Tuesday morning and the last thing my therapist does before i walk out of her office is stretch me out - it's my favorite part of every session. Well this morning was no different, except she did a new stretch - ok, no biggie. while i was walking out, i felt a little out of sorts, but i just chalked it up to the new stretch and paid it no mind. i get home and 3-4 hrs later i find that i am still feeling and walking really badly. I'm thinking, "ok, must tell Allison that she can do that stretch no more because i can't have it messing up my entire day like this again."

little background here...my alarm starts going off at 6:45 when i have to go to work (i say start because boy do i snooze), then it goes off again at 8 for medication. Well on Tuesdays, i have to wake up earlier because my appts are at 7:30. So i have a separate 1 set to wake me up on Tuesday mornings and the 1 at 8 doesn't even go off because that'll be in the middle of our session, so i take the meds just before i leave the house.

As usual, at 4:00 i get the reminder (no alarm during the week, i just have an Outlook reminder) to take the afeternoon pills and wouldn't u know it - the am pills were still in that section. Funny thing is, i have a vague recollection of taking them, but who knows maybe that memory was from yesterday - altho i could swear that it was this morning. This has happened before so i am confident that it had nothing to do with the new stretch or the MS per se, it was just the fact that i didn't take the pills!

So now, the MS gods are looking down and cursing ME for once again blaming them/it when they did absolutely nothing out of the ordinary.

MRI Time Again

2011-06-06T16:37:00.000-04:00

So i had a 2fer last week Friday...had to go in for infusion #14 (time waits on no-one; can't believe it's been so long already) and did my neck & spine MRI on the same day. The MRI was scheduled first, but they sent me in the infusion room for the nurses to set up my IV "so that i wouldn't have to be stuck twice" - LOL!!! (when they do the MRI, they inject me with a dye so that the lesions/scarring would show up more clearly so the thought is that they would use the same IV site that the nurses set up for the infusion.) As they say down here in the south, "Bless their hearts"...they really mean well, but on the day that I'm only stuck twice I'm extatic! As it turns out, i was stuck twice to set up the IV - such good times.

Anyhoo, so i was about to go into the tunnel for the MRI and i asked the radiologist if i should settle in for about an hour and she said, "no...it'll only take about 15 mins". 15 mins????!!!! She couldn't be serious. For real???? I'd adjusted my medication time so that i would fall asleep right about the time i was in there...i was skeptical and even wondered if she knew which areas i needed to have done but i didn't say anything (i should have - if they didn't get all areas i don't think that Aetna will pay for another), i mean i was scheduled for a neck and spine MRI so she must know what she was doing. I couldn't believe it - about 15-20 mins later i was out! i think that it was the best MRI i'd ever had done - even though i think that i dint insert the ear plugs properly because it was extremely loud in there (louder than normal, but then again, this wasn't a normal MRI experience)!

No results yet; i thought that i would have been able toget them soon after, but i couldn't. I called this morning and left a message so hopefully someone will call me back soon with the results - fingers/toes/legs/eyes all crossed that there's been no progression.

Cane Holder

2011-06-02T08:47:00.000-04:00

a very simple looking thing that, when i got it in the mail, i thought - this is some bullshit; how the heck is this supposed to work??? in fact, if OB wasn't here at the time i probably would have sent it right back to Amazon and asked for my money back!

well wasn't i in for a surprise...the thing actually works so damn well it's not funny. it essentially holds the cane upright when it's placed against any straight edge (table, countertop, anything like that); it's not as savvy if the edges are rounded but it stilll is better than trying to lean it up somewhere.

well...a few fridays ago we went out...hit 2 places that nite and had a whale of a time. I woke up Saturday morning to go do whatever the hell i had planned and went to prop up the cane and noticed that the holder was gone! what the?!?! when did that happen??? Don't u know that i was feeling like a fish out of water for the entire time that i didn't have my cane holder. I couldn't believe just how attached i'd become to the damn thing - i guess me and the cane are becoming 1 after all...

a couple days later, i promptly went back to Amazon and ordered not just 1 but a pack of 3 - jes in case! A gal needs to be prepared at all times.

Trini Terms according to Stax

2011-05-31T19:09:00.000-04:00

so a friend/reader who is Trinidadian and enjoys reading suggested that i create a glossary of terms for the Trini slang/terms that i use. i have the disclaimer of "lime" at the top of the page and most times i remember to put the meaning/translation in brackets, but when i don't, anyone can refer to my new page "(my) Trini Terms Dictionary". I have "my" in brackets as a reminder that this is MY dictionary and meanings may differ from the Cote Ci Cote La (the official Trini dictionary) - yes it exists.

Something i hear often is, "i like those Trini terms" or "trying to keep up with all the Trini terms" so i thought that the glossary of sorts is a good idea.

so it's a work in progress - i've included the link at the top...fellow Trinidadians, feel free to send me suggestions or additional/better meanings if u wish!

What I Miss the Most

2011-05-31T15:56:00.006-04:00

the ability to dance!

I'm talkin bout "bussin ah wine (the Trini dance for soca - gyrating ur hips to the music with ot without a partner(s))", ballroom dancing, any kind of dance. I've mentioned before that i cyah (cannot) wine no more - wining with a cane and a stiff left leg (my left side is the problem side - it's weaker, the left leg is generally the stiff one (it always wants to be straight)) is not pretty and does not feel right, so wining is out of the question. All i can do these days is listen to the music, sway side to side (a slight mini wine if u will) and use my cane as a prop to stomp to the beat and in fact Saturday nite, i used it as my flag/rag and was wavin it in the air :-) - UGH!!!

I used to dance when i was growing up - modern dance - and always loved it. As i got older i wanted to learn how to tango, so bout 5 years ago, i signed up with a ballroom dancing school. I was quite good, if i do say so myself, but had to drop out when i realized that i would need to rob a bank to continue. I was able to afford the lessons at first, but as i advanced and got to the level where i could perform at exhibitions and such, the cost became too much and even though i might have gotten away without robbing the bank the 1st year - beyond that there was no telling. So instead of risking jail for a hobby, i decided to let it go. For the short time that i did it, i enjoyed myself thoroughly and as i mentioned, i was quite good.

Nowadays when i'm at a fete or see people dancing anywhere in general, i feel a tug at the heartstrings - it saddens me just a little. When we're partying, most of my friends will come and take a wine on my chair or me (wish i had a picture to share) - just depending on the type of chair :-) and i love them for that - but it's just not quite the same.

May 24 2011

2011-05-24T09:32:00.001-04:00

Today is World MS Day

Join the Global Movement...what does MS = to you?

MS=Lifestyle Adjustments (many lifestyle adjustments...)

Cooler Fete 2k11

2011-05-23T18:24:00.001-04:00

Whomever came up with the "cooler fete" concept is a genius (I'm sure that most, if not all Trinis will agree). $25 entrance, walk with ur cooler (translated, u eh spening a dime when u get there - unless u want food) full or not full of drinks. ANY size, shape, colour, texture cooler. I wish i had my phone as i was making my way thru the crowd to take a picture of the blow up kids' pool that i saw full of liquour (that was a 1st - at least for me).

Now, i knew that cooler fete was Saturday nite; it's the 1 fete here that i always look forward to every year and what did i do? instead of keeping my ass quiet (see Spoon Theory) for the day, i did all sorts of things - had a massage, got my nails done, went to lunch blah blah blah...so even though i was feeling okay when i got home, by the time fete time rolled around i had about 3 spoons left!! ugh!!! Didn't let that stop me (altho i was mat at myself) and as it turned out, we were as far from the restroom as we could have been!, so u can just imagine the mess i was in when the stupid ass cops (ASSHOLES have nothing better to do with their time but mess up a very good time) stopped the party and sent us packing! This time around, i allowed K and H to carry me out (they formed a seat with their hands - isn't there a name for that hold? i normally politely decline whenever someone asks if i want to be carried) because, of course, we would probably now be getting to the car if i'd walked out on my own.

Good time, altho i know better and should not have galavanted all day like i have unlimited number of spoons to play with!

Back to Normal

2011-05-16T18:53:00.000-04:00

last week Thursday was the 1st nite since my ordeal that i didn't feel dizzy, so apart from a faint red spot under my eye, i am back to my 100%. whew! hopefully i won't have any more horror stories to tell for a while...someone told me last week that I'm due for a quiet non eventful next few months and i completely agree. In fact if that is the last "drama-filled, falling" story ever, I wont' complain at all!

Atlanta carnival is coming up on Memorial weekend so getting ready for cooler fete this weekend; it's the 1 fete i actually look forward to every year because it is generally very good. Last year at cooler fete, i had my 6 Kaliber in it because i wasn't drinking - LOL! good times/memories. Atlanta carnival has soooooo much potential (it's the 1st one in N. America, it's on a holiday weekend) but it's absolutely NOTHING to write home about (so unfortunate). in fact, we will just be liming hard (harder than usual) as opposed to doing anything "carnival like" - I think; I actually thought about going to FL that weekend instead.

Anyhoo, so things are normEl on my end; no stress, no worries and things are right with the world once more!

Quick Update

2011-05-10T17:21:00.000-04:00

I'm on the mend...my eye looks 100x better and i feel like a brand new person. I still have some vertigo experiences, esp. when i'm lying down, but it's NOTHING like last week! Of course, I was more of a pill popper for a minute, but even that is almost back to normal.

it truly is amazing how the body heals sometimes...this is what's left of the "Mike Tyson" eye and i swear it looks better and better as the day goes by!

HAPPY MOTHER'S DAY!!!

2011-05-08T09:00:00.002-04:00

to ALL the mothers out there, but especially to Learls! :-)

MS is to Blame

2011-05-06T10:22:00.000-04:00

I don't know about anyone else, but anytime something out of the ordinary happens to me without warning, my 1st thought is always "what now...is this the MS doing its thing!" i always do it and i'm sure that the MS doesn't think it's fair, but it is what it is...

the Vertigo kicked in on Sunday nite with a vengeance...i went to the MS Center Monday morning. There i was told that it was vertigo, but if it happened again, i must come back in to make sure that there wasn't anything else going on...well, by Wednesday, things had gotten worse and i could take it no more! I called the MS Center and got an appt for 11 that morning for an MRI. By this time, all the worst scenarios were swimming around in my head. Stroke, brain bleed, the works...The MRI was done and i was able to get on the same person's schedule whom i'd seen when i went in on Monday.

The results were in - i braced myself!

She walked in and said, "well Stacey, i have good news - ur brain looks fine; we have no problem there. The bad news is that you have a severe sinus infection - actually the worst i've ever seen."

wait a minute...a sinus infection?!!?!?

that is what is causing me to be dizzy, throwing up and has me feeling the absolute WORST i've felt in a long time???? Unbelievable!!! it appears that the blood that pooled and formed the bruise under my eye (from the fall), pooled in my sinuses causing the infection. It was cause for celebration, if u ask me, because everything was "fine" - she prescribed drugs (i have NO problem taking drugs) and today FINALLY, i actually feel like I'm on the mend.

I still blame the MS...had it not been for MS, i would not be going to PT, i wouldn't have been weaker last week Tuesday, i prolly wouldn't have fallen and wouldn't have a bruise (black eye) so there wouldn't have been any pooling of blood in my sinuses to cause the infection!!

Vertigo

2011-05-03T16:02:00.001-04:00

I've heard of Vertigo - never experienced it...until Sunday nite....and oh my was it AWFUL!

U know when u're tite and the room starts spinning when u lie down? Imagine that X 100! oh my goodness, the room just wouldn't stop spinning! it last about 6 secs, but i think it was 1 of the worst 6 secs of my life. It really was just AWFUL! it actually scared the shit out of me. it only happened once that nite and then again Monday morning, but MUCH MUCH less violently and only for about 2 secs that time. that's when i called the ER i went to when i fell; they suggested that i call my doctor's office.

I called and they told me to come in...i saw a doctor (mine doesn't work on Tuesdays!) and she told me that i'd sufferred from Benign Positional Vertigo. It commonly occurs after head trauma and gets better over time. If it happened again she said that i'd have to go back in and pull up my MRI, which is scheduled for 6/3 right now. Needless to say, i was ah lil afraid to lie down last nite (both times it happened, i was lying down), but luckily it didn't happen again.

Vertigo is something that happens to some MS patients...i'm hoping that the occurence was just as a result of my last fall and not an exacerbation/flare up coming on.

In Other News...

2011-04-29T15:24:00.000-04:00

my eye is healing well...I'm still scary to look at because now below my eye is PURPLE (i have some aviator shades that covers it right up), but 99.5 % of the swelling has gone down and my head is back to it's normal shape! When i was growing up, i never had any major injuries to talk about - i think i'm making up for that these days in my "more mature" age!

NEVER a Dull Moment!!!

2011-04-29T15:16:00.001-04:00

indulge me...this post might be a bit long.

So, i had yesterday and today off. As it turns out, the reason that i took the days off fell thru and last nite i was in 2 minds about whether or not i would go to work today. In the end, good sense prevailed and i decided to keep the off day and sleep in (i didn't have anything pressing that i had to go in for). The last thing i did before i went to sleep was turn the volume of my phone OFF. There's a reason for this. Anyone who knows me well, knows that the ONLY thing that will actually get me up when i'm sleeping is my ringing cell phone and for reasons known only to God and herself, G2 ALWAYS calls me on my days off when she gets to her desk in the morning. Last nite I said to myself, "Self, the last thing u want in the morning is to have to wake up by the sound of a ringing phone with G2 at the other end asking y u aren't logged on even though she knows that u are off." so what did i do? i turned off the volume on my phone!

so i'm sleeping blissfully this morning - not even dreaming, fus (it was such) it was a good sleep - and all if a sudden i hear the doorbell; not once, but about 7 or 8 times in succession. so of course, i jump up and i'm thinking "WTF!! who the hell is that and y the ass are they ringing my bell like that??!!??" i have to say here, that usually, i don't answer my bell - if someone is coming over, i usually know that they're coming and i'm expecting them - so naturally this morning, i was a little alarmed. I looked out my window to see if i recognised the car, and lo and behold what did i see? a fire/alarm emergency vehicle! so now, i'm a little more than alarmed, trying to figure out what the ass was really going on! i got my phone, looked at it and realised that i had 4 missed calls, 3! of them from G, so i called her back and asked her if she knew why there was an emergency vehicle parked outside the door. That is when she informed me that apparently the Life Alert button had gone off (!) and they were trying to get in touch with me. She was on her way home, K was on her way over and they told the Life Alert people that 1 of them would arrive soon to unlock the door. She said that she was hoping NOT to get a ticket fus she was speeding to get to the house and was trying NOT to think about what she would find when she got home. At this point, i think more because i was jarred awake than anything, i could barely stand and really did not want to go all the way downstairs to tell the man at the door that it was a false alarm, so i called back the Life Alert people and asked them to please tell whomever was downstairs to leave because it was a false alarm.

Toward the end of all the explanations and phone calls (K2 and S were already getting ready jes in case they had to go to the hospital, so we had to call them to tell them that everything was alright), who should call but G2 - calling just to chat not knowing ALL the drama that she started. when i gave her the story, she told me that she'd actually thought about calling at 4:30 this morning when she got up to watch the kiss meh ass wedding, but had a change of heart!!!!!! see? i know her so well, that i KNEW that there was a chance of her calling!!!

All in all, everyone had a good laugh after realizing that i was safe and there was no need for concern but now, i have to try to figure out a way to NOT set off the stupid thing when i'm asleep or maybe just NOT turn off my phone. Better fete, G2 needs to NOT call me in the mornings on my days off so i won't have to turn off the volume to avoid her damn call!

AARGH!!! - Story of my Life (these days)

2011-04-27T14:47:00.001-04:00

Well...i fell down again yesterday and had to go to the ER. all in all, could have been much worse....Steups!!!

I was shaky after physical therapy, so it makes sense Y i fell (i s'pose)...what doesn't make sense to me is that i didn't hit anything, on my way down (just because of where it happened), but i have a black eye, a bruise on my upper arm and a small one on my foot (all on the weaker, left side to boot). i look like a boxer - with that swollen, purple eye. It just so happened that I am off tomorrow and Friday - good thing, so i won't be very stressed out at work, so hopefully it'll heal properly.

My eyebrows are still HOT!

they did a CT Scan and everything looks good, so don't have to worry about that - it's just that i'm a Tyson look alike for now and a few more days to come i s'pose. It appears that the swelling moved down my face too (my face looks a lil distorted there) - my cheek is now swollen but the side of my head isn't.

argh!!! "happy" "happy" times!!!

Ramblings

2011-04-26T11:49:00.000-04:00

i hope that a good Easter was had by all; i had a good one myself. It wasn't a rough Lent, but i tell you, i couldn't wait to sink my teeth into some meat. In fact, can't wait to go to Eclipse to dig into some Veal Osso Buco and lamb meatballs that they put on the menu duuring Lent - mmmhhhmmhhmmm. Everytime i went during Lent, i had to just hang on to the aroma emanating from others' plates and imagine how both dishes taste.

i mentioned last week that i started going back to physical therapy. Well this morning was the 2nd session and again, it went well. The therapist had to walk me to my car though because had i walked on my own, i probably would still be trying to get to the car. It always amazes me (altho i am NOT asking any questions and just running with it) that when walking, i am a righteous mess, but put me behind the wheel of my car and smooth sailing. NO PROBLEMS WHATSOEVER!!!! i swear if that is ever taken from me, I'm not sure what i would do. I've said this before, i'll say it again - in my car is the 1 place where i feel like i'm on a level playing field with everyone else and i can take on ANYONE, ANYTIME (and i will win).

Anyhoo, i got home, got out of the car, took 2 steps to the door and fell right outside the front door. it wasn't a bad fall - in fact, it was one of those times when i just said, "fuck it, i'll just take this tumble and move on." i didn't try to fight it.

I'm inside safely and SITTING; will try to keep the movements to a minimum today :-)

Happy Easter!!!

2011-04-22T16:54:00.000-04:00

PT

2011-04-19T11:43:00.000-04:00

i'm breathing a sigh of relief...things weren't as bad as i orignally thought they were, so everything's well with the world again.

i started physical therapy this morning. I was going last year and then i don't remember what happened, but i stopped going - started back this morning. This place was recommended by the MS Sociey of GA so i'm hopeful (i know that there can be no guarantees). Things went well; we'll see how it goes this time around. it'll be 1 hr sessions each time - havent decided if i will go once or twice weekly yet. she did her evaluation and as usual i tested well. I have noticed that all my muscles when tested individually work really well and are always strong.

they push down on my knees and tell me to push up and vice versa? done
pull up on my feet and tell me to resist and vice versa? no problem
in a seated position, they try to close my legs while i push out? piece of cake etc etc

Put all the muscles to work together and take 3 steps and that's when everything goes to shit! oh goody!

anyhoo, so this is the 1st day of many more to come, and as i said - i'm hopeful, so we'll see...

Stress/Anxiety

2011-04-18T14:41:00.000-04:00

It really is amazing how ur body reacts to stress (at least i hope it was the stress).

i messed up at work...and didn't realize my mistake until kinda late...not too late, but it was late. I didn't stress out over it too much on Friday and Saturday, but last nite, i was a slight basket case and well this morning before i went downstairs - WHOA!!

one of the things that happens to me normally, when i'm nervous or anxious about anything is that i get cold - it's quite funny actually - it could be 100 degrees and i would be freezing my ASS OFF!! so put that together with my normal unsteadiness (heightened with cold) and u can just imagine what u get. I mentioned before that i think i may be getting worse (hopefully it's all in my mind); funny thing is that i only notice it during the week when i'm working. On the weekends, i'm okay but during the week, not so much. Am I stressed out at work? No..not until now! so this morning, i was just a righteous mess...

of course, i'm hoping that it was because i was stressing over the fallout at work and nothing more!

"You are a Nightmare"

2011-04-11T17:28:00.001-04:00

That's what the nurse who told me about the port said to me last week Friday. LOL!!! She's an IV nurse; she normally gets it on her first try, but someone else usually has to call her over...Friday, they had to get 4 vials of blood for all the tests to be performed and as usual, the "molasses that flows thru my veins" had to be coaxed out -

i had to let my hand hang naturally
the needle had to be pushed in and drawn out (not all the way) a few times,

...and after all that, she didn't even get 3 full vials! Steups! By this time, the 1st chick was fed up (she knew i was also in pain), so she called over the IV nurse and as she walked over, she looked at me, sighed and said, "u really are a nightmare". Of course that sparked ah set of jokes about their groaning on the Friday that they see me walk in, "oh geez, here comes Stacey - lemme pretend to be busy, someone else will get to her" etc. etc...

LOL!! Who knew that the infusions could have turned out to be happy happy times :-)

Funny...

2011-04-08T09:15:00.003-04:00

i always find it funny when other people can make jokes about my situation. So i mentioned that i gave blood the other day. It was a blood drive sponsored by the bank, so i'd emailed the coordinator 2 days prior with a couple questions (i'd never met the man before). I walk into the room where they've set up and when i signed in, (same fella happened to be the one with the sign in sheet) he said to me, ur name is familiar...have we met? So i told him that i'd emailed him a few days ago, bla blah blah...we engaged in ah lil small talk and i went on my way.

When i was done, i said goodbye to everyone and started my trek to the car (i swear that it was a 8 mile walk to the car)! Now, whenever I'm walking (esp if it's a tight space) and i hear someone behind me, I move to the side so that i don't keep back anyone. So...i heard someone coming up behind me, so i just moved over so that the person could go head...it was the same guy and as he walked by, he said, "boy Stacey...u not going to be winning any races or setting any records there huh!"

Now someone else might have been offended/get their panties all in a bunch - i thought it was funny as hell! I laughed and i laughed hard! As it turns out, we were heading to the elevator and he ended up having to wait on me to get to it :-)

i always appreciate a good laugh/sense of humour.

Size DOES Matter

2011-04-06T09:25:00.004-04:00

so yesterday i went to give blood...i've spoken about being a blood donor before, the diameter of the needle is (--) that big; the needle is HUGE (as far as i am concerned). Anyhoo, when u go to give blood, they swab the area with iodine - wiping(scrubbing) it clean. the chick yesterday did that and left the iodine on my skin; it's a dark brown liquid like substance. After all that, she had no problems and stuck the needle in with ONE shot - NO PROBLEMS, normEl, normEl. The blood flowed with no issues and i was actually done in 10 minutes!!!

I am convinced that the size of the needle makes a helluva difference; i doh care what the professionals think/say..it MUST be the size of the needle. Y is it that when i go for my infusion, my veins don't corporate??? they play the "i don't want to come out and lime" or "catch me if u can" games AND my blood never flows; in fact, recently, the lady had to use a syringe to plunge and draw the blood out of me!!!!! i think the veins see that "blood donor" needle coming and jes boil down like bhaji (settle/calm right down).

I'm a pint low...go easy on me :-)

Speak No Evil

2011-04-05T17:04:00.000-04:00

When i started working at the bank, i was in a banking center. I worked at many centers and they were all extremely busy. Whenever things slowed down a bit, it was taboo for anyone to utter those words, "it's kinda quiet in here" or "today's been really slow"....ultimately if someone uttered those words, the "Nationsbank bus" would pull up and let loose hoards of customers...

I've been avoiding this for a while now - for fear that it might actually come true/be true...

I think my walking is getting worse.

It'll be 12 months on Tysabri on Friday; it's working i s'pose - no additional scarring on my brain - altho, i haven't had an MRI on my spine since the original one last year, so who knows what that might show when i go for 1 this year (i'm assuming that i'll be sent to get 1).

Quite frankly, things are (feel) worse during the week than on the weekend - go figure! I'm still trucking, but i still hate having MS too!

Good Thing

2011-03-28T17:14:00.000-04:00

The damn Life Alert wristband is only for inside the house. It is soooooooooooooooo not attractive and not an accessory that i would wear AT ALL. On top of which my wrist is so damn small, it is too big for me. LOL

I must say, i'm pretty darn proud of myself. I actually remember to wear it (at least during the week); the weekend is iffy because I'm out and about for the most part.

Necessary Evil

2011-03-23T15:14:00.001-04:00

"ALL SENIOR CITIZENS NEED LIFE ALERT"

I've always hated that ad. for those who've never seen the ad, it's for the Life Alert system. Subscribers of Life Alert wear either a necklace or a wristband with a button they can press while they are in their homes if they have fallen and can't get up/need medical assistance. It's a very corny ad and definitely not 1 of the better ones on TV.

I've said time and time again that i hate having MS. It's caused me to start doing things that i never did before, stop doing things that i've enjoyed all my life and just in general make adjustments to my life (some okay, some not so okay) that i probably would not have otherwise. I'm at home by myself a bit - i work from home; my entire work day, i'm at home alone. After my last nasty fall, i realized that maybe i might have to make yet some more adjustments. I was lucky that time; if God forbid, it happens again, i may not be as lucky. UGH!!!

i signed up for Life Alert - i hate having MS. So now, there's a 2way speaker in the house and if necessary, i jes press the button on my wristband, a man speaks to me via the speaker and i let him know what the deal is. if he can't get me via the speaker, he calls my cell phone (i found that out the hard way the other nite - i got into bed and was trying to go to sleep and all of a sudden heard a man's voice in the house - i had NO IDEA what the heck was going on, but i didn't freak out. i got up to investigate (kinda like those dumbasses in the movies who u shout at NOT to do what they're about to do) when my cell phone rang and it was the Life Alert man. Apparently i had unknowingly pressed the button as i was getting into bed!

i view Life Alert as a necessary evil - i really don't like the fact that i had to sign up for it, but i realise that it is better to be safe than sorry.

Dr.'s Visit

2011-03-21T16:31:00.002-04:00

so i went to my neuro last week Tuesday...did a 2fer - went to see him and did my infusion one time (1 stick - woohoo!).

The disease is stable - my exam went well - nothing to report on that. he asked me if i've figured out the correct combination of all the drugs to take, i said yes and told him that i don't want to change the pill regimen. the things are not a bother and don't impact my life negatively in any way - got rid of all the napping, so i'm happy.

there is a blood test that he is going to perform to show if i've been exposed to the JVC virus (the one that causes PML - the brain infection); (i can never say that without laughing out loud - i think it's so damn ridiculous)! It'll be a year since i've been on Tysabri, so they like to test at a year to see if the patient tests positive to the anti virus and then make a determination as to whether or not Tysabri really is the way to keep going. I hadda (have to) say, that i hope that i can stay on it...i don't want to go back to a daily shot, nor do i want to start takin the new oral pill because...well it's new (that coupled with the fact that there's already been some BAD thing (i can't even pretend to remember the word he used) reported).

They'll take the blood for that test when i go for my next infusion - must remember to drink a bucket of water the day before and day of so that my blood will flow that time, so that they can get enuf to do the test!

March 17th

2011-03-16T18:26:00.000-04:00

Tomorrow is St. Patty's Day - drink green beer...eat green food. for people like me who have given up something for Lent (meat), it's your 1 free day! I can't wait to dig into some good ole meat tomorrow...i have to say tho, it's really not fair that this year st. patrick's day - the 1 free day that we have - falls 1 week after the beginning of Lent!

MS Awareness Week 2011

2011-03-14T09:16:00.004-04:00

Today marks the start of MS Awareness Week 2011...March 14-20

this year's campaign - MS=

in other words, what does MS mean to you? MS=lifestyle adjustments

check out the MS Society website and find your local chapter to see what events might be taking place during the week. for any interested parties in GA: eat at CA Pizza Kitchen this week (March 14-18) and 20% of the bill goes to the society. Download the flier on the page to take with u to the restaurant.

Wear your orange!

so...

2011-03-11T08:57:00.000-05:00

i've mentioned before that i have alarms going off at various times during the day as reminders to take my DRUGS. those who are around me regularly know exactly what time it is when each alarms goes off because they are as used to the things as i am...

2 Saturday nites ago, I went to a birthday party. It wasn't just a party - it was a 70th birthday so there were some formalities and dinner prior to the party part getting in full swing. During that time, there were a few speeches, a few prayers, couple performances and just a celebration of the person's life to that point - all his siblings were in town, so they were reminiscing (u get the picture). did i mention that we got there around 7:15? so anyhoo, everything started by about 7:30ish and the evening was underway...Now,

do i always remember that alarms are going to go off at specific times? no!
is my alarm a nice soothing one that only i might hear? no!

so in the middle of someone's speech, at 8:00, the shit goes off! Now the alarm sounds like a firetruck when it's going thru an intersection (that kinda noise pollution kinda sound) - a kind of "BARP!!" "BARP!!" "BARP!!" (it just went off as i wrote that!)...I mean i have to be able to hear it afterall...of course, as i took my phone out of my clutch to turn the thing off, it got even louder! it was a little embarrassing, but hey - i have to take my meds... :-) Afterwards, i was talking to K2 and he said (he was sitting across the hall at another table) that some on his table snickered and had to explain to the others (who were a little appalled), "yeah, that's just Stax - she has to take her pills"

Ah Comin for Ca-nee-val

2011-03-08T08:29:00.003-05:00

Im not doing a very good job this year of ignoring everything on these 2 days...the parade of the bands kicked off yesterday morning with J'ouvert - thank goodness i was asleep at the time so i had no idea what was going on...

Yesterday during the day however, i sneaked many peeks at the road - technology is a hellluva ting...there were so many live streams of so many different events this year - was listening to Red as they broadcast from the road, looked at pictures and just essentially tortured myself all thru the day.

Soca Monarch went off without a hitch. I must say that i was half expecting the feed to go down and interrupt during the course of the show and i was pleasantly surprised to see that there were no problems whatsoever and the quality of the feed was quite good. i know i will get alot of flack for this, but I'm sorry...but i really do not agree that Iwer "geh tief". he might have mash up the place, but Machel's performance was much better. The last song from Iwer that i remember really liking was Bum Bum Time (how much years ago was that!)...Machel is the only man i know who does release a album every year on a regular. so while Iwer might be d BOSS, Machel is the KING of soca!

Kes is Groovy Soca Monarch...very much well deserved!

Today, there is live streaming of today;s mas which is always better because people come out in full costume...

www.carnivaltv.net

for anyone who might be interested...and as i writing this...Advantage is playin on the stage. I read that it is already in the lead for Road March, with Come to Meh in 2nd place!

Trample it...Jump on it...Ramfle it...and Advantage it!!!! is we privelege to take advantage of the stage...

Once Again...

2011-03-07T08:35:00.001-05:00

She did it! 50 miles over 3 days...

3 Cheers for G2!!!

Hiphip - HOORAY!!!

there she is...bottom right in the white jacket! :-)

FANTASTIC FRIDAY!!!!!

2011-03-04T14:48:00.002-05:00

Today is Fantastic Friday!!! i not home for Carnival, but trust me, i am there in spirit that's for sure...it has kicked into HIGH gear, but especially today.

Tonite is Soca Monarch finals...i will be watchin and limin front and center on the soca monarch site
eh going and list all the other happenings between now and monday..

Monday and Tuesday - parade of the bands...people going and ramfle up that stage!!!!

This morning at 5:45, G2 started her 50 mile walk...

today is a great day! :-)...enjoy ur weekend fellas!

My Elvis Shake

2011-03-03T17:19:00.000-05:00

I think that people feed off of my attitude...at first, if they're not sure, they would be serious about things, but then when they hear me making joke or making fun of things, they might get into that groove too.

1 of the things that happens to me when i'm working out or on the eliptical machine or sometimes sitting (depending on what position my leg is in) is that my leg starts to shake. U know how u may sit and just shake ur leg quickly - well that happens to me unwillingly. Again, depending on how my leg might be positioned when i'm sitting, it'll just start to shake. After i've been on the eliptical for a while, it starts to shake....when i'm working out - esp if it's a leg exercise - it shakes (it's tied somewhat to how fatigued my legs might be).

So the first time it happened in the training session, i said to Reggie (my trainer), "see? look at that shit"...he said, "yeah i see...y are u doing that?" That's when i told him that i wasn't doing it, it was just happening. he was SHOCKED! he couldnt' believe it...but then after he did the obligatory concerned look etc, he said, "it's like an Elvis shake" and then he did it himself and from then on, it "lovingly" became my "Elvis Shake"...

In retrospect, i've had the elvis shake for most of my life. I used to dance when i younger and by the end of each class whenever i plied, the legs would shake! go figure...

LMAO!!

2011-03-01T13:49:00.001-05:00

hmmm...

some people may think that i don't take this disease seriously enuf because i make jokes. I do take it seriously, i take all the stupid ass pills, i go for my infusions, i don't put myself in situations where i may get hurt (not willingliy) and i am afraid of what it can potentially do to me. The truth is that (i can't say this enuf) if i don't laugh, i certainly will cry and those feelings of "feeling sorry for urself" and "why me" are just not anything that i like to go thru - for what? nothing's going to change, i just have to deal.

So i take the disease very seriously, the situations i find myself in sometimes? not so much!

I have an eliptical machine at home - going to a gym is just not an option for me (i'll break my ass on the way out and that is NOT an option), so i had the opportunity to get a machine for free and i grabbed it. Yesterday i decided to go on the machine - as usual - this is nothing new, i actually use the damn thing somewhat regularly. when i was done it was time to come off - obviously...well, this is where it can get a little tricky.

By the time i'm done, things are a little out of whack of course but i am always able to come off even tho my legs are usually weaker than normal. well not yesterday! i got stuck on the bloody eliptical machine...somehow my left foot (that bloody weaker one) got stuck (trapped) somewhere at the bottom of the machine between all it's legs and not for the life of me, could i raise it up to get it out. Thank goodness there was something for me to lean on so i wouldn't break my ass and who knows what else as i landed. Did i mention that since it was my left foot that was caught, i had to stand on my right foot which has only recently healed from my fall?!?!?!

When i was done laughing at myself, i called G because she was on the way home and i figured maybe i'd stay there until she got home, but alas she was not close. I had to muster all the strength i could to haul my foot out of the machine and eventually i did...i actually felt quite accomplished....

gotta laugh - sometimes the shit is just too funny

That Time Again...

2011-02-24T17:34:00.000-05:00

it's Carnival season...*sigh*

I've mentioned before that i will never go back home for carnival - i tear up on Georgia Ave in DC every time i'm there; i teared up a little on the truck in Miami last year - what will i do if i go back home? Bawl down the place like a baby - that's what (it won't be pretty).

Carnivals up here are NOTHING compared to the real thing. I can handle going to the parties and being on the trucks here, but there is no way i can survive doing that at home - there is no way! This year, i'm happy (secretly, selfishly) that only 1 of the crew is heading home.

Now, just because i know that i cannot and will not go home for Carnival doesn't mean that i don't get into the season. I mentioned in an earlier post that the music is on point this year - just about everyone is batting for six. The thing is that even if i didn't want to get into the season, i don't think i could help it. I listen to Red all day long (when i'm not on calls) - i can't work in silence - so music has to be playing. In fact, during this time, i'm glad i don't have to go to an office because i can listen to it as loud as i want to without having to think of anybody else.

Carnival is the 1 time that i really miss home every year - even if for a fleeting moment.

The energy
The happy times
The lime

2nd to none...

Showing solidarity on the truck :-)

Whoa!

2011-02-22T13:05:00.001-05:00

I'm not complaining - I swear i'm not (u all know that i of all people am not)...but 70degrees in FEBRUARY!!??!!! the world is coming to an end - what the?!?!?! of course, next week it'll probably snow - such is the weather in Atlanta - steups!! (sorry folks, i have no idea how to translate - it's a teeth sucking noise that we Trinis do)

Anyhoo, I've said before that sometimes i think that insurance is 1 of the biggest ripoffs ever. But boy am i thankful for it. My mother is an Executive Agent at Guardian Life and many good things have happened to her since working at Guardian Life and she is doing extremely well there - extremely grateful for that! Yesterday i got a bill for my last infusion in the mail. My copay is $40 on the day of and then i normally get a bill for 4.79. Yesterday when i opened the bill, it was 23.95 - so, of course i needed to understand y it had jumped so much all of a sudden. and i logged onto the insurance co website.

well i discovered that by the time i'd started infusions last year, i'd already met my deductible for the year - hence the low bill (I'd spent so much on my health last year). Of course i haven't done anything for this year as yet, so i have to meet my deductible before anything insurance kicks in. Okay, i can live with that.

Then i saw the actual cost of the infusion - 5032 big ones every month!! EVER GRATEFUL for the INSURANCE!!!!!! how do sick people without it deal? I guess they just deal with their ill health??? There was NO way that i could pay $5k monthly; i'd have to do an infusion a year or something. Maybe for sick people, insurance is not a the biggest ripoff afterall
:-)

Rhell (Real) Weird

2011-02-18T09:05:00.000-05:00

My ankle is 99.9% healed - I have no pain, only if I twist the food inwards (very slight) - and how normal is that??? I have downgraded from the boot to a splint (i've actually had this injury before (2 prior falls!!) and i guess something told me all those years ago to hang on to the splint) so I've been wearing that for the last few days.

Anyhoo, I kid you not, when i had on the boot, all other issues disappeared - everything was normal. Maybe the man above gave me a break because dealing with the boot and MY normal would have been pressha.

Now, it's off and i'm back to MY normal; i swear i feel like i just want to wear the boot just because - i could alternate feet weekly.

oh well, wha yuh go do?

Uncertainty of Life

2011-02-17T08:03:00.000-05:00

life has no guarantees!

As i've gotten older, i really get the meaning of "life has no guarantees" and life's being so uncertain. is it that when I was younger, I felt so invincible that I never really "got it"? or is it that i was lucky and in my younger days hadn't had to deal with too many instances of sickness, poor health, death that it never really struck me that nothing is guaranteed in life? We take so much for granted all the time and in an instant, things can change - at times with no warnings.

My grandmother died last week; she would have been 100 on March 26th. She was strong and healthy up until 5 days before she died and when things started going downhill, they went very quickly. No-one wants to see a loved one die, but we can take comfort in the fact that she lived a very long, full life and brought us many, many, many joys during her lifetime.

Her funeral was a celebration of her life and not focused on the mourning of her death. She will always be loved and will be missed by everyone who loved her.

G2's 2011 Walk Challenge

2011-02-11T10:51:00.001-05:00

Yup...she's walking 50 miles again - this time in Charleston.

Visit her page below; let's support her again:

G2's Chippin Against MS

P.S. Monday was her birthday - HAPPY BIRTHDAY G!!!!!

Funny How Things Happen

2011-02-10T08:53:00.000-05:00

so...i fell down on Monday, went to the urgent care place and the doc there wanted to give me crutches. I told him about my situation and my balancing issues and he suggested a boot instead. I put on the boot and STILL could not walk because i couldn't put any weight on the ankle. At that point, i had to get the crutches to use as well as the boot. Of course the first few steps with the crutches were touch and go, but i very slowly kinda got the hang of it while i was there. He still didn't really like how i was looking so i left the place with a prescription for a walker, because he thought that it would probably be my best option.

By the time i got home and practised with the crutches some more, i was doing ok. i stopped using the cane - obviously - and was wearing the boot and using the crutches. Wouldn't you know it....it seems that all the walking/balancing issues that i normally have are gone. i swear that if i take off the boot and throw away the crutches RIGHT NOW, i would walk normally - and not my "normal", normal like any other person (normEl, normEl!). ugh!! who knew that it would take my falling down the steps for that to happen.

Anyhoo, I can put some weight on the foot now. If i walk on tippytoe on the right, i feel no pain. Last nite i started using the cane again because i'll be honest i'm a lil afraid to go out in public (have my infusion tomorrow) with the crutches. This morning when i woke up, i actually walked around a bit without the boot, so the ankle is healing and i'm on my way to being well again.

Multiple Sclerosis & Me

the Cane Itch

so...

Life Without MS

Speaking of...

I Can't do Without...

Let the Games Begin!

My Birthday

Traveling

Birthdays

2012

Christmas

Old Years

MERRY CHRISTMAS!!!

And the "Winner" is...

Dreams Suck Sometimes

Christmas Spirit

Decisions, Decisions

Oye!

High Maintenance

Yesterday

The Oddest Thing

Nothing to Talk About

hmmmm...Am I Weird?

The Holidays

Happy Halloween

Finally

In other news...

JCV

oh boy...

Stacey Strikes Again

Perspectives

FL Stories

My oh My

Things that Make U Go "hmmmm'

heeheehee

Y Can't that B Me II

*sigh* Now Y Can't that B Me

All Bruised Up

that Fear of Falling

Walking up and Down the Steps

Falling...again - as usual!

Needing Assistance

#17!

Boat Rides

oh, That Positive Attitude!!

MS Really is Bad

To Do or Not To Do...

Asshole Drivers

HMPH!!!

+ve Attitude

PT Assessment

Dr.'s Visit

Skechers Shape Ups

interesting

Insurance Claims

June 17th

Driving

Reminders

i Knew It!

Motorized Carts

Cursing the MS Gods

MRI Time Again

Cane Holder

Trini Terms according to Stax

What I Miss the Most

May 24 2011

Cooler Fete 2k11

Back to Normal

Quick Update

HAPPY MOTHER'S DAY!!!

MS is to Blame

Vertigo

In Other News...

NEVER a Dull Moment!!!

AARGH!!! - Story of my Life (these days)

Ramblings

Happy Easter!!!

PT

Stress/Anxiety

sigh Now Y Can't that B Me