HNY!!!

Have a safe and prosperous New Year!

Falling

I haven't talked about falling in a while and trust me it's NOT because it hasn't happened...the thing about falling is that when i trip (or whatever to cause the fall), i always try to "catch" myself to avoid - this is normal, i s'pose.  But the times that i actually fall is when i realize "shit - this is not going to work" and i just resign myself to hit the ground and hope that i don't hurt myself or land on my face.

That happened one morning last week...i'm really not sure what the hell happened but i knew that the fall had potential to be a great disaster.  I think that I've mentioned before that I've noticed that it's almost as if my legs need to warm up before they work "properly", so who knows just how shaky I was that morning.  All i know is that I was somewhere between the porcelain goddess and the sink which had more stuff than usual around it and so there was no telling how the tumble could end.  I tried, I tried, I tried to hold on to something/anything to balance and then eventually, i said, "fuck it, i'm going down!"  It wasn't as disastrous as I'd anticipated, but there was a helluva lot of noise.  My mother said (yes she's back) that it was the fastest that she'd ever climbed stairs (she was downstairs in the kitchen and heard the noise).

By the time she got to me, I was already down - of course - and had decided that i was going to finish brushing my teeth before even bothering to try to get up.  And the end of it all, I only had a bruised thigh to show for it - could have been MUCH worse!

Merry Christmas!

MERRY CHRISTMAS!!

HAPPY HOLIDAYS!!! 

...here's hoping that you all have a safe and perfect Christmas!!!

The Formula

it only took 8 months...but i think i've finally figured it out.  I always try to drink at least 6 glasses of water a day - i tell everybody that the only things that i drink are water and alcohol :-).  Anyhoo, so 6 glasses a day, so i figured i (my veins) was well hydrated.  WRONG!  obviously something wasn't right because i would always have to get stuck so many times on infusion day.  but...i think that i've figured out the right formula....

I actually need to drink about 4 glasses the NIGHT before and then 6 more the morning of!  I did that the last 2x and there was no drama each time -the vein popped right up and blood was flowing ( ah lil slow, but that's beside the point).

4 more shopping days before Christmas!!

Tysabri

I didn't want to say this out loud before but I think that the Tysabri might actually be working.  I can see a slight improvement.  Trust me, I won't be running any marathons anytime soon, but I am almost positive that there is a small improvement.  Now, I'm not sure if someone looking at me can tell if there's a difference, but I can feel it, altho...

My mother surprised OB and G last week and came back up here for Christmas and i overheard her say to G some day, "but Stacey was walking real good this morning...", a good friend came to see me for a brief 24 hr stint last week and by the end of the day that i'd picked him up at the airport, i was struggling but the next morning, he said to me, "...but A  A, where u running going?"  A few weekends ago, we went to do our Saturday ritual (get eyebrows done) and G was amazed at how well i was walking.

On all the occasions, i had been walking "normally" - well -  as normal as I can be.  It was always that in the mornings, I would struggle less than at the end of the day, but i definitely feel better and look better these days.  There may be a light at the end of this tunnel afterall.

hmmm, Christmas

I  realize that not only did having MS mess with my thanksgiving this year, it's also going to mess with Christmas.  I've spoken about routines - managing my MS is all about routines; changing, adding, removing routines as you go.  I guess because it wsn't this time of year, i never thought about the holiday routine - cooking up a storm on thanksgiving, shopping way too much for Christmas, making puncha creme, rum punch, sorrel and i can go on.

well...this year i cannot shop like i want to and it is putting a little (just a little) damper on my Christmas spirit.  I have to shop online - UGH

• Altho I'm no big shopper, it's not as much fun as going to the store
• I'll have to buy the specific item - there is no shopping around (altho one can argue that that's a good thing - less $ spent)
• Kinda limited to the one store - kinda sorta, other stores won't catch my eye as I'm walking out the mall

but i guess it is what it is and there isn't much that I can do about it.  Always have to keep the alternative in mind and that is, going to the mall and then getting depressed WHEN i can't walk out!

I still hate MS!

Boots

I've said it once, i'll say it again, "I HATE WINTER", "I HATE COLD WEATHER"...in fact, the temperatures that we've been having here in Atlanta in Dec are a little concerning to me because Lord knows what January is going to bring - but I digress.

So there is absolutely nothing i like about winter - cept some of the clothes....a nice sweater, absolutely LOVE scarves... and boots.  I think that 1 of the best things that a woman can wear during the winter is a pair of high heeled boots.  Unfortunately my days of that are over :-(  I am deathly afraid of what could potentially happen to me if i put on a pair of high boots - it can only end in disaster.  The last pair of boots that i bought were completely flat - hate that - they are nice, but so not me.  Now don't get me wrong, even before the MS, heels were not really my thing, but every shoe that i owned had to have some height - let's face it,  i'm not the tallest gal at the party!

Now, I'm relegated to flat boots - boots with no heel, no height - nothing!

Yesterday

was not a good day - it was a "lovely" 30 degrees last nite and never rose above 40ish all day.  I was supposed to go out but opted not to because my legs were not working as they were supposed to at all.  i know that u're tired of hearing me say this, but I don't care what anybody says, my MS works better in warmth/heat and acts like ah ass in the cold.

Effin Side Effects - AGAIN!

so the side effects for both spasticity drugs are like the disease itself - totally inconsistent!  They both cause unbelievable drowsiness, in fact, a friend used to try to encourage me to take naps during the day; he'd be happy to know that sometimes these days i take naps by force - not really because i want to.  so anways, i'm on 2 medications (1 of them is 2mg 3x a day - how powerful do u think that is!) and I take them both at 8am, 4 pm and midnite.  when i take the 8am dose - i've already started working and it's unreal just how sleepy i get SOME days.  On those days, the drowsiness kicks me in the face around 9 - 9:30 - i always fight thru it and by 10:00, i'm good.  when i take it at 4? NOTHING - ABSOULTELY NOTHING!!!! cept for the time on the truck in Miami carnival and i was bepin like fus time (nodding off like the first time ever)! 

well at midnite, it's no biggie because 9x out of 10, i'm already in the bed!

Saturday nite, De ParangSide had their kick off to parang season and of course i was at the fete at midnite when my handy dandy alarm went off.  i was good for a while and then here comes the drowsiness.  Now falling asleep at home is 1 thing, dozing in the middle of a party?  totally nother story!!!  but it was unbelievable and i couldn't fight it...so what did i do?  i had to slink off to the back of the place, hide in a corner and sleep for about 1/2 hr!  when i was done, i woke up and continued partying like nothing had happened.

there is no rhyme or reason to when I'll be sleepy and for how long.  it's crazy!

The Cane

alright, so I'm sold on the use of the cane; it helps me most of the time.  Now, don't get me wrong, there are times when having a cane does not help at all, but those times are few and far between.  i bought 2 - a black and a brown, c'mon now, a chick needs to be stylish and co-ordinated.  They have both served me quite well and so now, i think it's time to put a cane on my christmas list.

• A thinks i need a limin cane (she's thinking one that lights up or something) to be used only when limin
• Another friend saw a cane with a sword in a movie - if he sees it on Fulton (he lives in NY); it's mine!
• G2 is on the prowl for a blinged out 1 with a pimp cup

When i started thinking about/looking for canes, i was amazed at how many options there were "out there".  Never in my wildest dreams would I have thought that canes would be on the market for $800 or so, but they're out there and there are so many differnt types.  It does make sense tho, i s'pose...for someone like me who has to use canes regularly, you would approach it as an investment and be willing to spend some money on it as opposed to someone in search of a cane temporarily.  Now, would I spend $800 on it?  Absolutely not!  but i am will to go beyond the $14.99 that I spent on the ones that i have now. 

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!