Happy Easter!!!

PT

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

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"

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...

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

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

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

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

"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

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

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

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...

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

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...

She did it!  50 miles over 3 days...

3 Cheers for G2!!!

Hiphip - HOORAY!!!

Hiphip - HOORAY!!!

Hiphip - HOORAY!!!

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

FANTASTIC FRIDAY!!!!!

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

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!!

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...

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!

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

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

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

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

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.

My Worst Nightmare

has happened...

just the other day i was talking about the steps in my house.  Yesterday i tumbled down - sorry, catapulted down 1 flight of steps.   (If i do say so myself, i think i would have scored a perfect 10 for my flips - twice) :-) I started at the 4th step and landed on the floor right by my front door (12 steps down) - on my side.  I was alone - actually i was glad that no-one saw because I'm sure it looked worse than it felt and it felt BAD.  After it happened, i composed myself and limped to my desk.

I actually went for a record yesterday, i fell 3X!!!  After the 1st one,  i didn't realize that my ankle was gone and i fell twice again afterward because i just couldn't put any weight on the ankle.   those times i actually did the usual and laughed because i was in so much shock - the 1st one was no laughing matter.

there is GREAT news...it ended extremely well - all i suffered was a sprained ankle; i didn't hit my head, i didn't hurt anywhere else.  in fact i don't even think that i bruised where i landed.  I went to an urgent cars facility and left with a boot and a pair of crutches - so i'm fine - no need for anyone to worry.

Needless to say, i'm working on the middle level as opposed to all the way down this week.

To my Trini Peeps

Okay...(almost) so every year (if u like me) i wonder what the hell they coming with again the following year - as far as soca is concerned.  I have to say tho that last year the only song that i liked from the very 1st time i heard it was "Palance"; everything else had to grow on me.  This year?  i like just about everything - there are few songs that i can do without and only "Advantage" had to grow on me (after 3 listens i was sold on the concept alone).

But SHIT!  Does some of the music have to be so bloody fast?????

Doh get me wrong, i have come to accept the fact that i eh go be wining down to the ground anymore.  The thought/picture of my doing so with a cane and 2 stiff leg is not a sight that even i would want to see, so i does jes be tapping my cane along, tapping meh foot to the music.  I swear that I can barely even do that to some of the music this year!  LOL!!!

i eh go lie...as i get older, i realize that there is absolutely nothing wrong with Groovy Soca and when i see the young 'uns carryin on (like i used to - of course) i jes want to tell them to "relax already - good Lord, settle down!"  Doh get me wrong, I am all for a good time and there is nothing like being on the road for Carnival Monday and Tuesday - in fact if i could i would be front and center, but sheesh!

Quite frankly, left up to me "Wotless" can easily win Road March hands down - no questions asked! :-)