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.

Ole Talk Wednesday

so i've started watching AMC's "The Walking Dead" - let me just say, very good show, but as i was looking at those zombie bitches shuffle along, it occurred to me that we walk just alike.  i shoulda gone and tried out for a part as an extra (it's filmed right here in Atlanta), i woulda gotten the part.  the only thing is for some things with no brains they move really fast and for that alone I might not have gotten the job.

it's time to start thinking about hibernation - i'm already slightly pissed off because of the temperatures here.  Anyhoo, Saturday nite i went to a friend's house lime.  In fact it was while i was getting ready to go that i realized that I'm going to have to start dressing differently and it was only because of who it was having the lime that i continued dressing - anyone else and i would have kept my ass home!  he has a friend (whom i've met before) who's father has MS.  when i saw the guy, i asked about his father.  as it turns out it had been a rough past 2-3 months, although he was on the mend.  He uses a catheter and the line had gotten infected; he was lying in bed and clearly something was wrong but he kept telling his wife that he was fine (talking to the men here - u know how you all tend to be - u're not going to any doctors for anything!).  Luckily his wife decided not to listen to him and called 911.  Long story short, the infection had moved throughout his body and he ended up spending a long time in the hospital.  if she hadn't acted when and how she did, the outcome might have been much different.  we talked for a while and 1 thing that Onyx kept telling me was to "keep working out".  he peppered our conversation with that any chance he got because he'd seen what happened to his father when he stopped and just couldn't stress to me the benefits of working out regularly and consistently.

I mentioned in a recent post about my having to think things thru entirely before i do something.  well one of the things that i NEVER think about that i really need to is my "juicing" appointments.  I bought a ticket to go home for Christmas the other day and it was only AFTER i bought it that i realized that i'd probably need to go in for my medication on the same day *gasp* - surely didn't thinkTHAT thru entirely did I???  i've come up with a solution that i hope will work.  going in on friday and will find out then - fingers, eyes, toes, legs all crossed because i not trying to hear that i have to change my ticket!

alright, as u were - i gone so.  hope u all have a GREAT day!

Miami: The Good

Funny...Miami carnival is really not about the parade - it's about the lime and the parties!

pump yuh cane and "jump" 

Gyal Bend Ova

so we limin in the back yard (the house was on water's edge) one day - 4 of us and the conversation went like this:

M:  ooh, ooh, do u see it?  right there ... not sure what it is but right there in the water

A:  well we in FL, so it might be an alligator

L:  well if it's an alligator and it comes right up here, we can all run fast and go inside....well, at least 3 of us will get away!

Me:  HAHA!! u not funny...i'll beat it off with my cane - none of allyuh could do that

anyhoo..this is how we do!

Before boarding the boat and setting sail...

After boarding the boat,  party hype...

this bugger (on the left) always chainin up people to do shots!!!

last nite of rhell limin

latah Miami...till next year!

Having MS...

means...

I'm not rolling in dough but i don't need anything either.  10-15 years ago, i hadn't been diagnosed as yet (did i already have MS and it just hadn't reared its ugly head or was it just thinking of ways to invade my body) and i really couldn't afford to travel here and there without a moment's thought but now that i can afford it (somewhat) i can't go anywhere willy nilly.  I have to think about "should i get a scooter to move around?  does it make sense for me to go?  is there a handicapped room or a walk in shower for me?" - it sucks!!

speaking of walk in showers...so i rented a house in FL this year for my birthday and this year for Miami carnival we also rented a house.  Miss (H) knows that she always has make sure that the house has a walk in shower to accommodate me.  it always works out that every time we are the first ones there, so we always park ourselves in the master bedroom (9x/10, that's where the walk in is) and let others "fight" for other bedroom space.  Anyhoo, so i enter the shower in the Miami carnival house and it is literally as big as my entire bathroom here.  i actually had to walk around in the shower to get to things like my shower gel, shampoo etc (because there was no shelving anywhere near the shower itself).  By the 3rd day, i didn't want to take any chances and was actually taking my cane IN the shower with me just to be extra careful.  lol...did i actually use it IN the shower?  no...but i thought it was better to be safe than sorry!

Luckily, i'm still very independent.  i can really only think of 1 thing that G does for me on a regular basis that i'm unable to do for myself.  I'm single, so anytime i want to go anywhere/do anything, if i have noone to go with me, i have to think about "is it safe for me to go alone/does it even make sense for me to go/do it?"

• the other day i wanted to go and buy some doubles and pholourie and thought twice about it because i was told that there was a small incline up which to walk. "small inclines to everyone else means Mt. Everest to me" so best i stay my ass home and find something else to eat 

that sucks too but it is what it is.  can't do anything about it because it appears that the MS has parked up and made a home of my body so i just have to deal with the fact that life has changed and i can't just do things on a whim whenever/however i feel like it.

so...

i've been trying to figure out how i can make this post short and sweet but...

anyhoo, Miami was nice altho i kinda wished i was able to go to at least 1 more fete buh say wha...lime cyah done!  we had a time and a half and like i said in my last post, i felt like i was only there for 2 days as opposed to 5 - steups!!  but...my story:

• i think i've mentioned before that i cannot sleep in complete silence; i could be dead tired and as soon as i get in the bed if all is quiet, i'll be wide awake.  well, the room in which i was staying had no TV and so every night i was listening to my music on my phone to drift off to sleep.  well Saturday nite when i got back to the house, i didn't have my phone and i had the BRIGHT idea to take 2 sleepy pills so that i would fall asleep fast (i was going to take 1 anyway, so i figured it would be no biggie if i took 2).  my idea worked and i went to sleep.  5 hours later, my alarm went off @8am for me to take my normal set of pills (4 when i'm off) with includes yet another sleepy pill - had i really thought about it, i probably wouldn't have taken yet another sleepy pill...i went back to sleep.  about 11am that morning (Sunday), i stirred - it was time to start the day - and my mouth felt like it was full of cotton balls (DRY AS PITCH) and i was just feeling out of sorts and couldn't really put my finger on what was going on and then i remembered that i may have taken too many sleepy pills in too short a short period of time - FCUK!!  Ari and I did some research on a Zanoflex OD and i didn't seem to be exhibiting any of the symptoms but needless to say i stayed in the bed for a while longer.
• fast forward about 3 hrs - i was feeling ok, back to normal, everything was fine.  i don't remember exactly what i was doing but i happened to look at the "Sunday" pill box and EVERY SINGLE PILL WAS GONE (all 6 for the entire day - 4 for the am and 2 for different times later in the day).  oh shit, had i taken ALL six pills that morning?  i had no idea... i was very sleepy that morning (of course) but i honestly couldn't remember what i'd done when i took the 8:00 pills.  i'm always very careful when i take them, especially because most times i'm lying down while throwing them in my mouth - WTF?!?!?
• fast forward 12 hrs or so - 6:30 Monday morning...i woke up for 2 reasons - i had to use the bathroom and i was under the blanket and was extremely hot!  (i'll skip to the end here)  i had to take 5 steps to the bathroom from the bed and as i came out at the 2nd step, a wave of nausea HIT ME, the 3rd step?  i broke out in cold sweat...by the 4th (even tho i was willing myself to just get to the bed) i couldn't take it anymore and i fell onto the bed but because of the angle with which i fell, i didn't stay on and slid right off.  i must say tho that at that point i was laying on the concrete ground and it felt so good because it was cool against my cold sweating, hot self.  i wasn't by myself in the room so the calvary eventually came in and picked me up and got me back into the bed.  By that time, i was ok and was able to drift back to sleep - whew!!

was it all related?  i don't know...i'm glad tho that all involved were there and able to help me and that things went back to normal right after.  No need to tell me that i did shit or i need to be more careful or anything like that.

like i said, this time it wasn't a funny story but all's well that ends well.

Miami

Well. It's over and what they say is really true,"time flies when u're having fun". I feel like I was only there for 2 days. I got there, blinked twice and it was time to come back. Steups!!

As usual, I'm back and the body is getting over the fact that we were partying up a storm so things aren't quite back to normal as yet.

Also as usual, there is a story altho this time it isn't the usual funny story. Ugh! But all's well that ends well so everything is fine. I'm using my phone to type this so I'll tell the story tomorrow.

Anyhoo, so ah gone so...just wanted to give a quick update.

A lil Bit of This, a lil Bit of That

well...i went in for my infusion last week and the results of the 2nd JCV test came back and i'm still positive (no surprise there (on my part)).  I also had my regular 3 month MRI and was told that , "i'll look at it and if i see anything amiss, i'll come find you"... noone came so i guess it's safe to assume that everything's okay - i'll call tomorrow to confirm, just in case.

The masquerade ball in November is moving along nicely; in fact i had to do a short promotional video for it - pure kicks; was a lil movie set complete with teleprompter, props, a gofer and a cameraman - too funny. now, i have to start working on my speech about which i'm so excited, i cannot contain myself - NOT!!!  I'm deathly afraid of public speaking of any kind.

Courts came to see me last week - we had a great time and while we were sitting in the infusion room, he coined the term, the "OB Shuffle"to describe my walking.  One of his reasons was that i always talk about how slow i walk - "if i walk any slower, i will stop" etc, so his reasoning was that so whomever i say it to can retort to me that shuffling is supposed to be slow so GET OVER IT!!  HMPH!! (yes, i tend to say it a lot) :-) alright alright

Heading to Miami carnival on Wednesday nite, so hopefully, as usual a good time will be had by all (we are really looking forward to it this year) and i will be without incident.  everything's been calm for a long time so hoping that that trend will continue.

what else...what else, i think that's it for now; nothing else to report - oh i got stuck 4X on Friday in case anyone's curious - can't wait for BG-12's approval and availability (word on the street is December).

alright, so ah gone so...