My Thanksgiving This Year

it was kinda bitter sweet for me - mostly sweet.  On one hand, it was GREAT as usual - G and I always go waaaaaaaaaaaaay out for Thanksgiving - I'm sure that someone out there might say we do too much, but we love it, love doing it, love cooking up a storm and will continue to do so (in fact, last year we didn't do anything - i went to a friend's house and it just wasn't the same).  I was off for the entire week, G2 and family were here, both parents were here and then on the day itself others came over to eat and lime.  We had a fantastic time!

We don't ever ask anyone to bring any dishes.  We do all the cooking - cept the turkey which we buy from Popeye's; it's a cajun deep fried turkey - delicious.  Anyhoo, so G likes to cook and so she normally has more dishes to do than i, but somehow this year, i was only responsible for 4.

Here's where it got bitter - I got thru 1.5 dishes before the MS kicked in and said, "uh uh - ur ass needs to sit down and relax!"  I'd been standing for too long i s'pose and i just couldn't walk or stand up anymore.  I prepared the first dish, then had to improvise and continue preparing the 2nd while sitting at the table,  rest for a few when that was done and then use a chair by the stove to do the others.  In retrospect, i guess it was a good thing that i was only responsible for 4.  It sucked!  i wasn't happy about it!  i cursed the MS and I cursed it loud!  I just couldn't do my thanksgiving as i was used to - i didn't appreciate that at all!  I'm sure that i knew that it could/would happen, but i still wasn't totally prepared for it when it did.  oh well, wha ah go do (what can i do).

Here's hoping that everyone had a great thanksgiving with family and friends like i did!

Happy Anniversary!!!

wow!!!  who woulda thunk it!  it's already been 1 year.

I started this blog a year ago and it has evolved into something that I never thought that it would.  I've been told that "it's inspiring", "it's funny", "it's a the best thing I've read since...", "I like to see what pictures u use" and honestly I've thoroughly enjoyed writing it...Never in my wildest dreams, did i think that it would evolve into what it is now - I actually had to be convinced to start writing it!

What do u do at this stage?  I haven't a clue, but I thought that I'd share some of my favorite posts:

• My Support Group Part I
• My Support Group Part II
• Y this; Y Now?
• A Jokey Story
• The Spoon Theory
• True Story
• U Can't Make This Shit Up
• Happy"est" Times

I actually can go on but I won't.  ThANK YOU ALL!!!! for reading and for keeping me going!

Encouraging/Good/Great News

Went to the doctor today and the results of the MRI were good.

• No PML
• No activity of the existing lesions on my brain
• No additional lesions

In other words, there has been no progression of the disease within the past 6 months and maybe, just maybe, the Tysabri is doing its job.

Happy"est" Times

so OB is here.  He came in on 11/7 and he's been "terrorizing" me ever since.  He AND G are taking jabs at me every moment that they can....talking about how slowly i climb the steps, how i get into the car - jokes cyah done (continuous trash talk)!  My mother comes in tomorrow and i know that it'll be us against them for the entire time that she's here.

It's all good though - that's how we do.  I've said it before, I'll say it again - if i don't laugh, i'll cry and from where I sit, laughing is the better option!

MRI Tomorrow Morning

Well...we are here.  I am scheduled for my 1st MRI (happy times - NOT) since being on Tysabri tomorrow morning.  Luckily i didn't have to go thru the last rigamaroll (shenanigans/bullshit) like the last time because this time I'm having it done in house at the MS Center.  The other good news is that it's only going to be of my brain so it won't last 2.5 hours - i really can think of a million other things i'd rather do on a Saturday morning!

This is how the MS Center tests to see if I'm at risk for the brain infection and maybe I'll also see if Tysabri is helping at all (diminished/decreased/no additional lesions on my brain)...not sure if it's too soon to see all that - it's only been 7 months.  I have a follow up with my neuro next Tuesday so we'll see.

A Bit of a Loner

Having Multiple Sclerosis has taught me that i can lime with myself.  When we go to fetes and i have to sit in a chair, i don't expect everyone to lime around me and sometimes, they don't.  i've always enjoyed my "Stacey" time, but now more than ever i have it.

I am sure that i've always been aware of that, but it really  hit me in Miami carnival that i've become (by force) a bit of a loner.  I was on that truck for the ENTIRE day by myself, limin with strangers who may have jumped on and off - let's face it, it's not the easiest thing in the world to get on and off those things, so i certainly didn't expect anyone to do it jes to come and lime with me.

In other news...i was only stuck ONCE yesterday altho my blood, once again, was as slow as molasses going into the vials but at least they got the amount they needed this time around.  I drank much more water than i normally would, on the day of, this time so maybe that made a difference to the accessibility of the vein?  I will put the port on a back burner for now and see how things go the next few times.

HAPPY BIRTHDAY!!!!

how could i forget...

11/8/many many many years ago

HAPPY BIRTHDAY G!!!!

NOT Talkin Shit

I know i'm not talking shit.

Monday was G's birthday and we went to our home away from home, EDl.  I couldn't even bend my knees to get out of the car.  Have u ever tried to get out a car with ur legs as straight as a board?!?!?  NOT cute or ladylike!!!  I felt shame for just a moment when i almost pull down the fella who was helping me out the car! it was some stupid ass temperature like 50 or so...






today it is 70 degrees and i've been walking on my own all day!

I understand that it is natural to be stiffer in the cold i s'pose but good grief i am out of control- what the hell do i have to look forward to in December????  I am seriously going into hibernation.

it's a "tropical strain"; it prefers heat/warmth/sun...

Monday Blues

Before i started working from home, i was a BITCH on Mondays.  Those days are long gone, altho ever so often, i will be a little grumpy on a Monday.

I think my body suffers from the monday blues...i swear i am the worst on Mondays and as the week goes on, i get better with my best days being the weekends - cept now that it's cold.  the cold just totally fcuks with me; it's time to hibernate again.

Well Looky Here

so i've mentioned before that i have alarms going off at all times of the day to remind me to take my medication AND that i haven't a clue if/how all the meds i'm on actually do anything for me.

well...yesterday i found out.

that morning at 8, my alarm went off.  I was in the middle of making breakfast, so instead of walking to the alarm to turn it off and take the pills and then walk back to making breakfast, i just let the alarm keep going and the plan was that when i sit down to eat, turn it off, take the pills and eat.  well i turned it off and began to eat.

As the day went on, i really found that things were a little off.  I was jerkier than normal (more puppet like if u will) and the whole walking thing was actually getting on my nerves and pissin me off.  I normally work out, with a personal trainer, on Thursdays and i was actually thinking of canceling the session (a valid reason to cancel - WOOHOO) because i didn't know that i could make it.  Anyhoo, i kept on trucking on as i do...

A little later i was talking to a friend and he was asking me about the medication and how things were going, etc etc and that is when it dawned on me that i didn't take my 8am meds!  it was 1:53!!!  no wonder i was all out of sorts- WOW!  those actually do something...an hour later, i got up for something and i was normal (or at least as normal as i can be).

good to know that i'm not taking them for nothing!

Port Saga Continues...

So my personal doctor, Dr. L or G3, and his family were here last week.  He and his wife are both doctors, so I was telling them the port story.  She thought that it was a good idea from the beginning, he had to be sold - when he found out that i would be using it monthly AND they will be drawing blood each time, he got on board. 

Of course, like all things medical, there are risks.

1. it's a surgical procedure to insert it
2. infection!!

They both said that the biggest risk is infection - a nurse doesn't wash their hands and handles it could lead to that.

of course, it's just 1 more thing about which i'll have to deal with the insurance company...not really looking forward to that - I'll need to decide if i want to do it this year or next year.  I already have to have an MRI done later this month to ensure that I am not at risk for the brain infection (side effect of the monthly Tysabri infusions) so who knows what more they'll actually pay for!

ARGH!!!  Being sick truly does SUCK ASS!

U Can't Make this Shit Up

So G stayed with me in the infusion room this time around.  I think i mentioned before that the room is very comfy - recliners, pillows, blankets - u couldn't ask for more.  So we set up shop next to each other to await the afternoon's activities.  Well, by the 4th or 5th time of trying to get my blood, the nurse and I had a small conversation that went like this:

Nurse: "ur veins are really tiny...anyone tell u about port?"

Me (so excited): "Port?  that will help?  really?" - in my mind, I was already thinking, hehhehheh, i will need to start taking these days completely off and i'll drink a glass (or 2) of Port before coming here, so that the blood will flow,  the veins will bulge and getting into them will be a breeze - a valid excuse to knock back a few?

G, next to me, hearing my excitement and putting 2 and 2 together says, "Not Port, jackass!" "A port!!!"  I came crashing back to earth...Apparently the nurse had asked me about "a port" a few minutes before, but i didn't hear and someone else had walked up and distracted her so the conversation never continued.  G heard when she'd asked the 1st time so realized that it was some kinda apparatus or something that she was talking about.

Anyway, in a nutshell, a port is a small device that is inserted and remains right beneath the skin.  A catheter connects the port to a vein and blood can be drawn from/drugs administered in the device as needed, with less discomfort for the patient than a typical "needle stick".  In other words, it's a "sure thing" and would be used every time i go for an infusion.  No more, "guess how many times i'll be stuck today" or "veins not wanting to "come out and play"" or any of that usual bullshit.












The nurses suggest that i think about it because my veins give so much trouble. Food for thought...

Infusion Time "Fun"

Anyone want to take a wild guess as to how many times i was stuck last Friday?

anyhoo...so i went on Friday for my 6th (time flies when u're having fun) infusion.   The head nurse (andrea) walks over and starts trying to get my vein to corporate (applying heat, tapping it, flicking it).  It looks like it's going to be a good day but then she goes in and... has no luck....the vein is just not on this infusion business and has better things to do i s'pose.  She calls over someone else...she nails it!  woohoo!!  we are on a roll here.  This time because it's my 6th one, they need 3 vials of blood for whatever blood work they have to do.  The chick says that she'll wait to get blood after i've gotten the medication. (skip ahead 2 hrs)

Andrea walks over and says, "lets get some blood and send u on ur way."  She takes the syringe and whatever other apparatus they use and inserts it into the IV, pulls back on the plunger and - NOTHING!!  She thinks that the vein that we're in is kinda tiny, so she'll have to go in somewhere else. (skip ahead 45 mins)

By this time, both my wrists and forearms are sore and 2 other nurses have seen me.  Remember i said that they needed 3 vials of blood?  they got 3/4 vial!!!!  My blood just didn't feel like flowing.  At the end of it all, Andrea said that they will just take it and do whatever testing they could with what they had.  I was so happy to hear her say that because i really wasn't in the mood to try yet another time.

so...at the end of it all, how many times did i actually get stuck?  7!!  twice for the medication and 5x for the 3/4 vial of blood - sooooo NOT what I signed up for!

My Trini Atlanta Family

Anyone from Trinidad will tell u that there are Trinis EVERYWHERE.  U go to the Mars, it go have some (there will be a) Trini limin,drinkin and fetein with the aliens!  So i came to Atlanta and eventually fell in with the Trinis here - of course.  They were an older crowd (adults!) so all of us - they referred to us as "the students" or the "kids" - liked to go to their homes, eat good Trini food (u know a student's staple is Ramen Noodles, not to mention the culture shock of dealing with various new dishes in a new country) , sleep in a nice comfortable bed (not the dorm room lumpy single bed) and enjoy that "home away from home" feeling.  It was also good to get away and lime with people who "talk like me" and don't ask if we "swing from trees" in Trinidad - it happened, I swear.

So I've known some of these people for a long long time.  In true Trini style, there are a few "aunties" and "uncles" and some of them know me well enuf to have seen me "grow up".  Anyhoo, i was diagnosed in 2005 and as I'e mentioned before, if you looked at me, u would never know that there was anything wrong.  Anyhoo, as time went on, it came out that i have MS...well u know, not much is known about MS, so i'm not sure if it really sank in. 

Last month, 1 of the Trini associations organised a bus ride to a nearby casino.  At the time i'd already gotten the cane, so we both boarded the bus.  I found out afterwards that seeing me walking with a cane was a blow to alot of them - it actually brought a few to tears.  I ran into 1 couple last week Friday and regardless of how much i told them that i don't want them to cry for me because i was okay, the husband eventually told me to move away because seeing me again was hard for him.

It's really touching and i can understand how it can be shocking to some - esp if they haven't seen me in a while, but i really don't want anyone to cry for me - at least not now :-) - because even tho some things have changed, i really am okay!

RRMS vs SPMS

Those are 2 different types of MS: 

• RRMS - Relapsing Remitting Multiple Sclerosis
• SPMS - Secondary Progressive Multiple Sclerosis

Most people at onset are diagnosed with RRMS.  This form manifests itself by the patient experiencing "flare ups" that last a few months and then eventually everything just goes back to normal (like nothing ever happened) - case in point, in 2007, 2! years after being diagnosed, for 7 months of the year, i had double vision and a feeling of being high and no motor skills (amongst other things) - wasn't cool at all and then jsut as quickly as it started it stopped and things went back to normal.  If u ask me, that really was the only MAJOR flare up i ever had.  There hasn't been another time when things were crazy for any length of time and then nothing.  Now, don't get me wrong, my feet/arms tingle (like that feeling just before a limb goes to sleep) off and on and a few other things, but nothing major - at least in my book.

Most people diagnosed with RRMS eventually develop SPMS.  This is charachterized by a progressive worsening of symptoms - which may or may not be accompanied by flare-ups.  I have a feeling (what with my medical degree and all!) that i have developed SPMS.  I have had no flare-ups since my first one - i lie!  i had 2...2 years prior to my being diagnosed, my vision did something odd and no one could figure it out.  that lasted some months as well and then things went back to normal.  My walking has gotten progressively worse over time and again - no flare ups!  I used to hope that the walking was a flare up but I've pretty much given up on that now.

I have a routine visit with my neuro next month and 1 of the questions for him will be whether or not i've developed SPMS (great! just *&^^* great!!!).

A Few Pics...

so how funny it was that there was another person at 1 of the parties we went to who had the same cane as I...pictures lil blurry but...

limin on the truck...

the chicks in all their glory... 

Tropical "Strain"

I am convinced that my strain of MS is tropical and hates the cold weather (0r maybe just Atlanta)!  Went down to Miami this past weekend and not that i didn't have issues, but i certainly didn't struggle as much as i do here sometimes.  I'm going to have to move to FL...it's already been cold a few mornings here - it's time for me to go into hibernation.

i actually used the cane everywhere i carried it - i'm getting used to it now.  Took it to all the fetes, even took it on the road.  Of course, i can no longer play mas, but K is a good friend of the DJ for one of the bands and arranged for me to be on the (music) truck.  I lasted the entire day on the road - cane and all - and had a blast!

not the truck i was on, but u get the picture

I was actually having 2nd thoughts about going on the road, but i'm really happy that i did, even though i got ah lil emotional when the band crossed the stage.  Not being able to play mas and really enjoy myself in a carnival fete are 2 of the things that REALLY upset me. 

• We go to a fete and i have to siddong (sit down) most of the time - that SUCKS!
• We play in a band and i have to ride on the truck and not be on the road - that SUCKS ASS!

but!  I will look on the bright side of things - i can go and enjoy myself in my own way, besides which i don't think that any of my friends will allow me to stay home!

Ramblings...Post about Nothing

Most times when I go for my infusion, i see the same people.  That only makes sense since it's supposed to be done every 4 weeks; so we are all on the same schedule.  Every so often tho, I will see a new person or 2.  So this last time (once again only stuck once - WOOHOO!) there were a few people who actually walked/looked like they were suffering from the same symptoms (y do i ALWYAS have to use spell check with this word) as me.  They say that misery loves company, and i am really beginning to totally understand how true that really is.  of course, on the flip side, there was also a woman in a chair...oye!  Now this woman had been there from 11-2:30 because they were "trying to get a good vein".  They eventually had to send her home to come back some other time (didn't macco (be nosy) well enuf to know when) because after 8tries (and letting her rest in between) they gave up...WTF!!!  hopefully i'll never have that experience.

i was looking at my feet the other day and it dawned on me that the veins there look perfect (to my trained by the internet eye).  Don't know if i'll ever muster the strength to go there (is that normal) but they appear to be bigger and more prominent than those in my arms/wrists.

The nurse who'd spoken to me about using a cane at the infusion center was so very excited and proud of me because i had actually gotten 1.  She noticed it right away and told me that i'd made a good choice and i won't regret it.

True Story

Saturday i had to take my car in to Honda.  I got there and the Honda man opened my door.  I told him my usual, "I'll take a moment" because in addition to just taking my time to get out the car, I was juggling a book, a cup of coffee, the cane, my phone and my handbag.

He said, "no problem...take ur time.  Would u like me to hold something for u?"...i said, "oh yes, thank u"...

 and handed him the cane!!

Not Sold

So...I'm still not sold on this cane.  I'm giving it a chance, but...

yesterday I had to pick up my car from the repair shop - how the fcuk do u see a parked car that is sitting in a practically empty parking lot and then reverse into it?????  that is just beyond my realm of imagination...but as usual i digress - so i went to get the car, took the cane and what did i do?  held it in my hand instead of actually using it!  HELLO!  I'm a loser, yes i know.

• I get that it will help with my balance - i think.  What if i have it in my right hand and i start to sway to my left?  what then?
• I'm not sure that it will help me when i'm stiff - can it really help me then?
• what about when my knees decide to lock up - to me that is just more drama

I'm still being positive...I am not going to write it off.  I just have to get into the habit of picking it up and actually using it i s'pose and we'll see what happens.

It's a nice sleek one...it's not fancy; didnt want to spend too much money on it until i know it'll actually be worth it, but it's cool enuf that i won't mind walking around with it.