Approved!

BG12 was approved...buh bye ominous threat of brain infection (that i may not even know i have), hello possible nausea, diarrhea and stomach indigestion.  lol

seriously, now on to the (possible) fun and games to get on it.

Wretched!

it's my new "latest and greatest" term to describe MS these days.  between the situations that i find myself in sometimes and the stories that i've heard, i think that "wretched" is most apt.  i was in a funk last Saturday morning...without going into details, i just had to deal with a situation that got me thinking that MS can really strip you of all your dignity sometimes.  Even when you're by yourself and get out of a situation, just the fact that you are IN the situation in the first place is enuf to send somebody over the the edge.

On the flip side, my mother (smart lady that she is) often says if everyone can put their respective diseases in a barrel, shake up the barrel and then pick whatever they want out of the barrel, 9X/10 they'll probably pick the same WRETCHED disease that they had in the first place (kinda "the devil you know" type situation)....but i wonder, will i really take back MS?  maybe it'll depend on my options...hell, do i really have to pick anything at all???

Anyway...Walk MS in Atlanta is on 4/13 this year.  Hopefully, it'll be a nice day (clearly Atlanta didn't get the memo that we in spring already because of these stupid ass temperatures) and we'll be able to go out there and walk/scoot in all our glory.

the walk thruout the years...always a good time.

Ayeyayae!!

so...

there's this company - we'll call it ABC Drug Manufacturer - that controls the market share of MS patients because the drug they make is probably the "least worst" available to us.  "Surprisingly" they have been putting pressure on the FDA to stall the approval of BG12...hmmm, wonder why???

Well, let's see...

• BG12 is oral, their drug is a needle prick
• They both have side effects (of course) but BG12's are supposedly "more tolerable" than most
• BG12 is supposed to be a more aggressive drug
• hmmmm...

I'm not stupid, i know that they don't give a damn about little ole me and it's all about the bottom line but really???  do they really have to try and stick it to the maker of BG12 just because it's quite obvious to us all that they'll probably lose patients oops money because people will jump ship???

it's just so unfortunate because there are so many patients out there just waiting (patiently because we have no choice) for this drug to be approved and become available.  

Now don't get me wrong, i want/need for the powers that be at the FDA do their due diligence before approving but it soooooooo does not need to be about profit in these situations.  

March 27th

is supposedly the day that BG12 is slated to be approved by the FDA.

I've been gone for a long, long time.  truth is i was in a writing funk.  I started a couple posts and just was never able to finish them and i just didn't know what to talk about.  i'm not sure what happened...guess i need to be rejuvenated; hopefully things will look up from here.  

anyway, i went for my infusion on Friday and was told that we should be looking forward to 3/27/2013.  at this point, my fingers, legs, arms and eyes are ALL crossed because boy am i ready to be off Tysabri.  BG12 is somewhat new and of course, there are risks with that, but i'm ready to shake this "brain infection risk" monster off my back - i say "somewhat new" because apparently the drug (or some form of it) is already "out there" for use by people with psoriasis - it's new for treatment of Multiple Sclerosis.  

Couple things about that brain infection:

• The nurse practitioner i was talking to told me that apparently they have found that the average month within which a Tysabri patient develops the infection is 38; guess who just went for #37!!!
• Also, it's possible for you to have it and NOT DISPLAY ANY SYMPTOMS (y can't i ever spell this word on my first try) - WDF?!?! she was actually able to say that with complete certainty because there was a patient at the MSCA like that.

happy, happy, joy, joy.  so you can understand y i am so ready to be off Tysabri and get into something else.  On top of which, since it's an oral drug, i won't have to deal with anymore needles and small veins and my blood not flowing (when they have to take blood) and...the list goes on.

HNY!!!

wishing you and yours a very prosperous 2013!!!

New Place

we've moved...i've always said that the only thing worse than moving is finding a new place to live.  well for this move, i used an apartment finder AND a moving company so both processes were quite painless.  of course when i submitted my requirements for the new place, i included a "walk in" shower and the fella knew right away where he would send me; as it turns out, that's exactly where i am.

i thought that i'd have to be on the first floor and i really didn't want that but as it turns out, this place has a parking deck, so the apartment is actually on the 4th floor.  it's a nice place but can i just share that, i eh go lie, I'm ECSTATIC to be without stairs...leaving the house behind (we're going to rent it out) was like closing a chapter of our lives - it certainly is the end of an era - but the night that everything was moved, i walked from my office to the kitchen to the balcony to my closet jes BECAUSE I COULD :-)  It was a beautiful feeling that i really cannot describe :-) :-)

i've already christened the place - ugh and it was really odd.  i was actually standing, having a conversation with the cable man when all of a sudden i lost my balance and went crashing down - ayayaye!!  i apologised to him after because it jes happened with no friggin warning.  he also apologised to me for not doing anything because, poor fella, he didn't even realise what was happening fus it happened so fast.

in other news...i had a long MRI done on 12/18 - a cervical spine and brain - and according to my doctor (when we were talking bout my pain), "well you look good on film..." so that's good news; there's no activity/additional scarring.  he also told me that he's thinking that it might be March for BG12 (i'm not holding my breath, altho i do want to get off the Tysabri).

hope u all are having a great season; i sure am.  Nothing beats a Trini Christmas!!

Falling Behind Again

so many things to write about but i just havent had time....it's been a really, really busy last few weeks.

i've had this feeling in my left (of course it's that more affected left side) arm for a long time..i'm not sure how else to describe it,  but a feeling.  you know how when u hit ur funny bone and u get that weird feeling?  it's not pain, it's not an itch...it's just a weird feeling.  well that's what i've felt...and, what i noticed was that when it got more intense, that's really when my left hand would act up; it starts to clench up and not for hell could i open it unless i pry it open - great!  well, i've been living with that for a while - told my doctor of course, but as usual i just chalked it up to one of those things and there were times that i didn't even notice it (actually, i'd spoken to another MS patient once and she said that she has the same kinda thing - it's such a good feeling to know that it's not just u).  anyhoo, about 3 weeks into November the feeling became PAIN!!

oh great!  the pain felt like...u know when a muscle is about to cramp up and u jes know that if you stretch it in another direction or something, it won't turn into a full fledged cramp?  well yes thats how the pain felt; problem was that i wasn't sure exactly how to position my arm for me to get some relief.  it would happen, but it wasn't something specific that i was doing - i would just get lucky.  the pain was most intense at night but once i got into bed, it would ease up...well, i didn't do anything about it and went to the MSCA on 12/18 for my infusion.  when i told Beverly the nurse practitioner, about it, she decided to administer (intravenously) some steroids.  i was skeptical (because of course, it's steroids) but she made me feel okay about it and i must say that the pain just disappeared.  I saw my doctor later that day and he actually prescribed some more (oral) steroids for me to use if i wanted (i left for home 2 days after so couldn't go back for the 2 additional doses of IV steroids that they would normally give) but i actually didn't fill it because i've heard horror stories bout the oral drug.  MS!  gotta love it right? wrong!  but i do have to live with it.

anyway, so i'm home.  i'll probably try to post once or twice again but please don't hold me to it; i'm not making any promises.  allyuh hol it dong until i return or post again (maybe)

oh, just in case i don't...

i hope Santa brings u all everything that u asked him for :-)

Masque 'n Mas

Before i continue, let me publicly thank Krista for her 2nd to none introduction of me that nite...i was appalled when it occurred to me later that week that i didn't thank you on stage (gasp)!!

ok...so as i said before, the nite was a very good nite...we had good fun.

My mask was handmade by Sdee and i asked her to use orange to represent the MS and all the feathers are on the right side - my stronger side - to balance out the weak side most impacted by the MS.  I've posted a few pictures below but see the full write up and all pictures here on Trini Jungle Juice.

A collage of me that was placed by the door

 My table centerpiece

 MSCA representing!

 lol!  Nige had a GREAT time :-)

 We nicknamed him "the cat man"

 I really thought that Rhoms won the "most unique mask" contest

 1st generation

 2nd generation

 U cyah really make it out, but G is in this picture

 G wasn't there in person

 Me and Sdee

 OBs, me and the photographer of the nite

November Continued

so...i got another cane.  G2 bought me a "glow in the dark" cane.  the handle and the grip are blue in normal light but then they glow a neon green in the dark - rather cool.  it also quickly became my 2nd favorite because the handle is padded and so i used it a lot - until i busted meh ass on it the other day and it bent - great!  i walked out my door and lost my balance but luckily i fell into a shrub that's right outside the door so no harm done - cept to the cane.  Steups!!!

 Before

After

I am now the proud owner of a spanking brand new red scooter (thanks again Learls!).  No more renting when i need one and i can use it whenever/wherever i want.  we went to the mall last week Sunday so out came the scooter.  Now, i'm not a shopaholic - i spend all my money in one store - Express.  if it's not in Express, chances are it won't get bought and i've learned to really enjoy shopping on express.com but it was Learl's last weekend and we had some things to get so off we went to the mall.  well, in the Express store...

• i brought down a rack of shirts, 
• pushed 2 people and a display to areas that they weren't supposed to be, 
• missed bursting a chain and bringing down the jewelry display by a hair (luckily Learls happened to be there and saw what was about to happen)

all the while of course i was laughing and apologizing profusely!  crazy...driving the scooter on the open road and in a store are 2 completely different things!  

alright..well as u were.  this is it for now.

hol' it dong,

 

I'm Back

wow!!  it's been a long long time...

November was one helluva hectic month.  OB arrived first, 2 weeks later Learls and her 3 sisters came in (can we say full house?), the masquerade ball happened, thanksgiving and then 1 by 1 the visitors started leaving - with OB and Learlyn leaving bright and early yesterday am.  i had no time off and worked right thru and just had no time to write...thru all of this the MS behaved itself - thank God!

GREAT, GREAT, HAPPY, TIMES!!

i'm in search of a personal trainer - ugh!  my last trainer got a job in NY and moved back - i was not a happy camper but what could i do?  of course, chances are that i won't be able to find a trainer who will charge the same rate that i'd been paying so woe is me.  I really need a trainer, as we all know, so i'm on the hunt.

The masquerade ball came off without a hitch - was a very nice event and well attended too.  My mask was hand made and i asked Sdee to use orange to incorporate the MS colour.    i made my speech and actually felt good throughout the whole thing so i didn't rush (i tend to do that sometimes), i came off very confident and apparently alot of people liked it.  All in all was a good nite - some people got tite so that's a sure sign of a good nite :-)

I can't post more pictures, because i haven't been sent any yet and i only had these 2 on my phone.

anyhoo, this is it for now...be back tomorrow for a few more updates from last month.

Masque of Beauty, Masque of Strength

Only 12 more days to go before the GCC Fundraising Ball 'Masque n Mas' on Nov 17th 2012 at 7pm.

Top 3 reasons you should attend:
1) Support a good cause
2) Support a community member, Stacey Samuel O'Brien
3) Enjoy a night of entertainment

 and creative expression.

Please purchase tickets in advance, as they will not be available at the door.

Tickets are $45.00 per person - purchased through:
http://masquenmas12.eventbrite.com/# or by calling 404-202-0205/ 770-722-5828/770-330-3872

FIGHT FOR A CURE FOR M.S.!!!

News

so went in for my infusion on Friday...

good news!

• guess at some point i lost track of things...i was already scheduled for my infusion on 12/18 and i'm leaving on 12/21, so there was no need to get my panties in a bunch last week about my travels.  That day will be an extremely long day at the center - i have to have an MRI of my neck AND spine (it'll take about 2 hrs (read FOREVER) oh goody, can't wait), the infusion and then i go to see my doctor for a regular 6 mth check up.  1st appt is at 10:30 and the last is 3:45 - can you say all day in there?  ugh!!!

not so good news...

• apparently word on the street is that BG 12 won't be available until summer 2013 - "great"...we have to wait even longer now.

other news...

• my veins are acting up again.  there's a new nurse in the infusion room and try as she might last month, she couldn't get to one.  so friday when i entered the room, i looked at her and said, "ready for me?"  i was actually joking because i knew that she probably would be just as unlucky this time around.  well i guess she likes a challenge because she came over - "great"!!  well after the 2nd time, she gave up and decided to call in the big guns!  now Anita always gets it on her first try (no problems), but not this time, she had to poke around before the vein finally gave in and caved.  i'm so ready for BG12 it's not funny.  

and wouldn't you know it, when i got home, i looked down and there was a vein so big and large (well as large as mine get) bulging and staring up at me and laughing like nobody's business!  STEUPS!!

I'm asking Santa for bigger veins this Christmas!

Hol it dong...

BG12

Read this online; it appears that we now have to wait until March 2013 to get word from FDA re: approval of BG12.  Steups!  do they know (read care) how many people are waiting for this drug to become available???

Anyhoo, better to be safe than sorry i s'pose.