Monday, November 29

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!

Wednesday, November 24

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

Tuesday, November 23

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.

Sunday, November 21

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!

Friday, November 19

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.

Wednesday, November 17

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.

Wednesday, November 10


how could i forget...

11/8/many many many years ago

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, November 8

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.

Friday, November 5

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 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!

Tuesday, November 2

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!