Wednesday, June 27

Anger...It's All About Me

so Learls called me last nite and told me that she got a very "angry vibe" from me in my last post and that i should stop cussin the MS.  Truth be told, I was just telling the story and didn't mean to give off that vibe at all.  I told her that i might have been a little frustrated at the time but definitely not angry and then i thought about it...come to think bout it, at the time i wasn't even frustrated.  In fact, i can think of alot of other times when i was angry or frustrated or even got depressed but this certainly wasn't one of them.

She acknowledged the fact that i can be angry at it, angry at the fact that i have it but at the same time i should remember that we really have nothing (not too much) to complain about.  it's true - i really don't. 
  • Am I grateful for MS?  hell no! I've heard stories of people who are glad that they have it because it made them pause, take stock of their lives, if u will and they are grateful for that.  Am i one of those?  No sirree Bob!
  • Do i wish that i didn't have it?  But of course!  the pills, the monthly infusions, falling all over the place, being worried about falling all over the place, the uncertainty and i can go on...
  • Is it the absolute worst thing that has happened to me?  that is still out for discussion
  • is my case the worst?  NO!
  • is my case really bad?  No - it's bad (in my book) but it's not really bad
  • Should i be thankful for what i have to deal with?  Yes
so...was i angry last week Saturday?  not at all.  is it okay to cuss the MS?  yes...but not all the time or too too often; karma is in fact a bitch!  Saturday was just another ordinary day in the life of Stacey with MS; I was just telling my tale.  I was just going back to the title of the blog: 

Multiple Sclerosis & Me;
MS: Multiple Sclerosis, My Story
(it's all about me)


  

Monday, June 25

I Hate AC


i really do...there's nothing better than nice fresh air and blazin hot sun to me. anybody getting into my car will be able to tell who drove it last, me or G. If she was driving, the sun roof is closed and the AC is on as opposed to me; the AC would definitely be off and the sun roof open. well - i know i've said this before- ...nothing could be worse for me now that i have MS. fcukin-a!!! steups!!!! as a result, AC is my best friend.


so on saturday i went for a massage.  i love how my legs look after the massage because of whatever cream/lotion/oils that the chick uses.  they look great - they may not work well, but they look great and...i digress. anyhoo, so afterward, i decided to go to my home away from home/my "Cheers" if u will  for lunch. Unfortunately for me they were having a summer fest in the parking lot later that day so i had to park in a different spot on the other side from where i normally would park.

Now, it took me all of 7 mins to get from the massage place to Eclipse but the problem was that the car was parked in the sun for the hour i was in there, so 90 degrees outside plus blazin sun and the car in no shade, i shudder to think what temp it was when i got in, so of course, 7 mins. later, even with the ac on full blast, the car was still hot...back to the parking spot. It wasn't far but because of where it is, i never use it and so 5 mins later (that's how long it took me to get out of the car, between my hot body and my slick, non working (because of the heat and because whatever the ass the chick uses, i couldn't grab on to them to place them where i needed them) legs, how "happy" was I that there was a small incline to get into the restaurant from there. "GREAT!!!" on the inside there are 2 little steps where the incline is...FCUK! and then to make bad matters worse, on both sides of the incline were bushes and shrubbery - oh boy, this is going to be interesting. I'm happy to report that i made it down the incline with no problems, not even any "touch and go" moments but of course, i was so anxious about everything plus by this time my body musta been 900 degrees, so u know, i could barely continue. Luckily 1 of the waiters came outside right about that time so i asked him to walk me in. By the time i sat down, (acc to one of the waitresses, I'm VIP, so they actually let me sit at the 1st table even tho it seated bout 8 people) i was sweating bucket ah drop and i couldn't take another step even if they paid me to.



I sat, ate lunch, had a drink (i really wanted to be sure that my body was cooled down) and walked out about an hour and a half later. Another waiter said he'd walk me out and i happily obliged because even tho i was ok by then, i still had to walk up the little incline.

Bong to/must/hadda have a story!


Wednesday, June 20

Atlanta Carnival Review in Some Pictures

this is plenty pics but bear with me...


that left leg jes likes to be straight regardless! :-)










this fella was too much fun!





Band Leader
















Tuesday, June 19

10 Things I Couldn't Live Without

I mentioned a challenge i signed up for and FAILED - a post a day for the month of April.  well i'm cheating a little now - I'm using one of their topics to create today's post...so here goes.  My list of 10 things I can't live without (in no particular order)...

  1. My support groups - the inner circle and the not so inner circle, my family and friends - without them - woe woe woe would be me, i can't even begin to think of what i would do without them. 
  2. ALCOHOL - i'm no alcoholic in fact i like to think of myself as an alcohol lover - to steal a phrase from someone - an alcohol "connoisseur" if you will...but let me tell u, this shit would be so much harder to deal with if i couldn't indulge from time to time
  3. My (AM/PM) pill boxes - I actually just had to order another set of 7 - i always know when i have a good time somewhere because for whatever reason, i come back with fewer than i left with (right now I'm recycling 3!)!  I would not be able to keep up with the pills i need to take daily AND at specific times without them.
  4. speaking of which...the daily pill alarms - what?  U think that because i've been taking them EVERY DAY at the same time that i would remember to actually take them?  NOT!
  5. My canes - God forbid i didn't have those things
  6. My handy dandy handicap decal - nuff said!
  7. Shoes with a small heel - i just don't understand why  the hardest thing that i ever have to do at any given time is walk barefoot OR walk in a flat shoe; it can be quite depressing (not being able to walk barefoot, that is)
  8. A walk-in shower - i was never a bath person but i do remember that when i moved in here, i was a tad bit disappointed that i didn't have a bath tub.  HAH!!  these days i am so, so, so glad that i don't have to deal with stepping over the edge of the bathtub to bathe...ugh!  it would take me so much longer every day just to get ready
  9. My ability to work from home - ugh!  going into an office every single day would just be so difficult for me - i shudder to think
  10. My cellphone - it doesn't grow out of my ear like some people, but i really need to have it with me at all times.  Think about it, when i find myself in those funny situations, i won't be able to pick up the phone and call someone for us to both laugh at myself or be talked "off the ledge" 
There you have it (and i'm sure i can keep going) but...i'm not sure how i would go on without the items on this list, some of course, are just a wee bit more important than others :-)

Thursday, June 14

the "Good" Ole Days

went for my infusion on Tuesday...I had to be stuck 4 times! it brought back memories for all of us in the room...
Truthfully, i havent been drinking water like i normally do/should be for the past few weeks, i knew that things might have been tricky.  in fact, it wasn't until Monday nite, i said to myself, "shit, i have an infusion tomorrow - i should have been drinking water for the past week!"  there was a new nurse there too and the older heads let her come to me (poor thing); she didn't stand a chance in hell - she kept apologizing and eventually gave up after the 2nd time.

I also had a follow up appt. with my neurologist.  good news - there is no additional scarring/signs of PML on the last MRI so things are stable.  Unfortunately, Stacey being Stacey took advantage of the fact that i was off the entire day, so i went to the barber and made another doctor's appt that morning so by the time i got in to see him, i wasn't in good shape.  I wasn't the worst i can be, but i was bad enuf that he was concerned.  i told him that by the time my infusion was done, i'd be ok...and of course i was.

On a side note, he opened the exam room door and exclaimed, "oh!  what did u do with your hair?" (remember i'd just come from the barber so it was fresh)  well i still havent answered him because i was in so much shock.  First, he's a man and secondly, he's my doctor who i don't see that often (granted he's seen me with my mohawk already but still) - i couldn't believe it!!!  LOL



oh...P.S - i'm up to 8 falls now.

Wednesday, June 13

okay

i know i promised u my story "tomorrow" but allyuh hadda gimme ah bligh, i've been sick like a dog since i came back.  i didn't even work last week THursday or Friday and those who know me well know that i must been rhell sick because i don't like to call in.

so...we decided to go and lime in Bootleggers in Trincity Mall; it's a sports bar.  Problem was that my parents weren't sure which door we should go thru for the shortest walk for me.  OB deposited us at the one nearest the elevator because of course, Bootleggers is upstairs.  Well turns out, that door was about 6 miles from the place - okay, so maybe i'm exaggerating just a tad, but i swear thats how it felt to me :-)  we walked down 1 aisle, then another only to discover that the elevator was OUT OF ORDER - fckin A!!  Did i mention that Trincity Mall is apparently the biggest one in the Caribbean???by this time, my left leg was saying, "oh hell no, u not serious!!" but i kept going.  problem was that Bootleggers was upstairs and the elevator wasn't working....we came up with a plan.  My cousin, AA would go on my left and Learls would be on my right as i board and come off the escalator.  ordinarily i could use an escalator as long as i step on and off with my right foot...well this time since the left foot was already saying, "uh uh, nope i done work" things were  going to be tricky.  getting on was okay, coming off was a little unnerving but we made it.  so now Bootleggers is around the corner.  "around the corner" for normal folk is around the corner, "around the corner" for me sometimes is 2 miles away and that nite, it might as well have been 12!  At that point, the group decided that it was time to take drastic measures and AA held the right leg and Learls took the left and they carried me the rest of the way all the way into the bar.

We got in and had to wait for a few minutes - i sat down during this time to try to get the left foot going again.  Alas, it still didn't feel like working by the time we were to be seated so here we were - a group of people taking 2 steps every hour thru the bar because 1 of them was having problems - at that point OB took to bending down and "walking" the left foot for me.  a fella took pity on us and allowed us to use his booth that was closer and the same size (he was waiting on his party to arrive).  All in all, a good time, but what excitement/drama to get there.

Of course at the end of the nite, since i was sitting for the whole time, i was able to walk out and wouldnt you know it - we discovered a MUCH closer door - will definitely remember that for next time!

Fun times cyah done!!!

Wednesday, June 6

Home

I went home last weekend.  For those reading and finding this out for the 1st time, doh cuss meh; it was a very short trip and i spent the entire 4 days in my Trincity.  i eh go lie, i was concerned about how the temperature would affect me, but didn't really care.  truth be told, i had thoughts of  "since i'm home, maybe the MS and my body will act right and everything will miraculously disppear".  well - HAH!!!  that sure didn't happen, in fact, instead of being shaky/unsteady (i'm not sure how else to describe) some of the time, i was like that ALL of the time.  oye!  pressha!!!  i didn't let that stop me tho - i had a GREAT time..Trini sweet too bad and my family is a riot!!

I had no falls, but, of course there is a story!  of course, at the end of it all, everybody was laughing, but i tell u...okay sorry, i can't type it all right now, but i'll definitely tell it tomorrow - promise!