May 26, 2010 is World MS Day

World MS Day : National MS Society

My 1st Drink...

So i had a drink (since the end of April; bout 6 months ago!) last week Friday; was a beer - only 1 and it was COLD in d ice (ice COLD)!  went down good; nothing like an ice cold beer!  We were limin at the house - no need to risk anything happening outside - and i figured that it was as good a time as any to have 1.  Kaliber is okay and all but i mean c'mon...Happy to report that there weren't any adverse reactions and i wasn't wasted after 1 beer! 

:-)

I Have MS, It Doesn't Have ME!!

So I mentioned in my last post that the friend came up to me in the cooler fete and told me that he admired me for not allowing the MS to keep me from having a good time.  I'm limin hard, fetin up a storm (partying), driving (again some say like a bat out of hell, i beg to differ) and livin like i don't have a degenerative, incurable, neurological disease!  my response to that is that I HAVE TO!!!  I'm taking all the bloody pills and shots (WOOHOO, last nite i threw out all the shots i had left; I can barely remember the last time i injected myself; can't wait for the new treatment to start), exercizing and managing the disease as best as I possibly can but I ABSOLUTELY REFUSE to stop doing shit that makes me happy. 

I've mentioned before that driving is the only time that i feel like I'm on level playing field with everyone else...there's no stiffness, foot dragging, needing to sit, blah blah blah; I feel totally normal.  I'm not going to stop driving jes because something MIGHT happen at some point.  Is that stupid?  some may think so but F*CK IT; I'm not giving it up. 

Sometimes, if someone asks me in shock/horror if I'm doing something/going somewhere alone, I feel a little resentful (i know it's genuine concern and I really do appreciate it), but somewhere deep inside, i want to say that i'm not trying to be a burden to anyone and there are some things that I CAN/WILL do on my own. 

• Am i going to go to a fete by myself? NO!
• Will I go shopping alone? Absolutely - I'm not much of a shopper, but I can spend hours in my favorite store, but as soon as shit starts feeling weird and going wrong, I am out of there!

 I've said it before, my hero days are over; i know my limitations...I'm not going to willingly put myself in a situation that I know i won't be able to handle.

Cooler Fete

So I mentioned that cooler fete (party where u pay to go in but u don't buy drinks (altho there is a bar) because u walk with a cooler(any size; I've seen refrigerators converted to coolers) filled  with drinks) was this past weekend. 

End of the Night (this picture does not do the cooler justice; it was much prettier at the beginning of the night)

As usual, we packed up our cooler with everyone's poison of choice (Kaliber for me - YEA!), threw my chair in the trunk and proceeded to have ah time  - we didn't leave till 6:30 the next morning, so I think it's safe to say that we had a great time!  J, who has not seen me since December, told me TWICE that he was totally amazed AND impressed by this new medication.   I didn't use the chair half as much as i used to and when i did, i only used it because i didn't want to chance not being able to walk out NOT because i had to. 

Spoke to K this afternoon.  She'd been watching me all nite and was also impressed with how long i was able to stand, able to take ah lil wine here and there, walk in and out of the venue without assistance and lime lil bit outside when we were leaving :-).  Even G said that it was most obvious Saturday nite, just how well the Ampyra is working.

At some point, i was sitting and a friend, who is new to the lime, came over and said that he admires me because I don't let anything stop me...i'm out there having a good time inspite of the MS and I just make adjustments because i know my limitations.   He absolutely loves my attitude about everything.  I've mentioned before how Trinis find humour in everything; another friend said to me, "want to take this outside?  Ah go (I will) take ur chair from u, leh we (let's) see just how gansta u are then!"

Ahhh...happy times! :-)

Legalize It...

they say that weed helps with the pain...i don't know, but when i was going thru my crap in 2007, i tried the weed (mummy, close ur eyes) because the dumb ass neurologist i had at the time, couldn't tell me anything.  i only did it once or twice - it's something i didn't enjoy (i know some people might be gasping in amazement now) and it didn't help me one bit - maybe because i didn't smoke it enuf?

Montel Williams used it (not sure if he still does) at some point when the disease was wreaking havoc on his body.  In this interview, he says that it actually helped with some of the other symptoms as well.  Of course, in CA (and a few other states) medicinal marijuana is available.

I was talking to a friend of a friend the other day and he mentioned that his father has MS too.  I'm not sure how he's been affected or what meds he's on or anything, but the fella said that about once a month he drops a pound of weed off for his dad to ease the pain. 

Begs the question...should doctors be allowed to prescribe marijuana as part of the MS regimen for their patients if they think that it will help?  sure beats walking around with a pill organiser and popping hundreds of pills at various times in the day...hmmm

Food for thought...

MS Walk Atlanta

A few pictures from the event...okay so we forgot the camera so we only have a few pictures of our group "Trinis & Friends Against MS"- not the entire event but enjoy anyway...

ME!

                           The Group!

                                                                        Walkers! (thanks folks!)

Non-Walkers!

Someone had to stay with me in the park to wait for everyone else to get back :-)

HAH!

So the bus - Stax3, my car -  has been the method of transportation for the past few weeks since I, the bus driver, am not drinking.  With this whole "no drinking" thing, I've come to realize that if we go to a restaurant or something, after we done eat, I am ready to GO!  Nothing else going on, because sitting watchin everyone get their drink on is no fun for me!

well, we went to a sports bar after the MS Walk, Atlanta on Saturday and the lime was too sweet (going good).  I couldn't take it anymore and I ordered a beer - Kaliber; the Guinness non alcoholic beer!  Well i've never understood the concept of a non-alcoholic beer - beer is an alcoholic drink!!! It didn't taste horribly i s'pose, it was okay, but I am throughly shamed to say that I might have been a lil tite (tipsy) after my 2nd one - LOL...*jes a little*.  What i've learned is that they say "non alcoholic" but what they really mean is "less than .5% alcohol". 

I have to laugh at myself...have I become a lightweight after not drinking for 3 weeks? Did I really get that "warm & fuzzy" feelin after drinking 2 NON alcoholic beers??????  LOL!  say it aint so!!  anyway, this Saturday is Atlanta's 1 and only cooler fete (party where u walk with ur own drinks in a cooler)...guess what I'll have on ice!

G2's Walk Challenge

Well i was supposed to go to NC and support G2 on the weekend of this walk (big lime (hang out) in NC), but there is a change of plans.  I'm going in for my 1st Tysabri infusion on 6/4, so i'm not making any plans to go out of town that weened.  Instead, I'll be limin in the infusion center with a needle in my arm! :-(

I sent her an instant msg (we work at the same place) to say that i wasn't coming and she exclaimed in horror but then when i told her y, she completely understood - OF COURSE...oh well...next time.  There's actually one in Atlanta this Saturday.  I'm going - not walking, but I'm heading down there to support K and whomever else shows up to walk it.

G2 is walking in Charlotte this year in the MS Challenge Walk.  It's a 3 day, 50 mile walk taking place in NC on June 4-6.  Let's "raleigh" around her and Move It together!!!  BIG LIME IN NC that weekend!!!  Here's the link to her website:

G2's Website for the Challenge Walk

Speed Demon

I am $266 poorer...i went to court on Monday for my speeding ticket.  I've gotten about 4 speeding tickets in my lifetime - 2 of which were out of state.  In my experience, when u go to court, the fine is lowered considerably.  Well not this time....it was lowered by a whopping $16!!  I am looking on the bright side...they actually lowered the speed from 82 in a 55 to 72, so i get 2 points on my license as opposed to 4 - that is good news! 

I swear if there were 5000 people living in Atlanta, 4950 of them were in that court on Monday.  The place was lukewarm-ish, smelled frowzy and all those people!!! OYE!!  I got there at 2 and left at 4:15and I had to pull out the MS card too.  Of the 4950 people, 4900 were in line for the cashier...I had to tell 1 of the cops there that I was unable to stand for long periods of time and he worked with 1 of the employees to allow me to sit while I waited.

Did i learn any lessons?  YES!  keep a closer eye on the road looking for those torturers (cops)!!  I'm still speeding...I can't help it.  Like people who choose not to drink alcohol, I jes don't get people who drive slow!

Waiting Game

this last waiting game I've been playing is over!  I was contacted by the MS Center yesterday and have scheduled my 1st Tysabri infusion on 6/4.  The most surprising news?  The insurance company claims that they will pay 100%...when I exclaimed in bewilderment, the chick said, "yes that's what they said, but u can call me before u schedule the 2nd one to confirm that they paid in full for the 1st one if u'd like."  WOW!  who woulda thunk it...not me!

So...before starting the infusions, i have to be off of the daily shot for 2 weeks...since this process started, i have been slacking off taking the shots - i cyah lie.  So, I missed last week Thursday and Friday (the legs are the sites i hate the most), took it Saturday and completely forgot Sunday.  Yesterday morning, for whatever reason, I decided to do the right thing and take it.  F*CKIN A!!!  because of that, I couldn't go in on 5/21.  (Since this is new and I'm not sure how I'll react (side effects and all!), I want to go in on a Friday for the 1st few times.) 5/28 is out - won't be in town...so I have to wait all the way till June!  That leaves me a whole week to continue with the bloody daily shot - F*CKIN A!!!!

On aother news...the Ampyra continues to work; still no side effects and walking almost like a champ! :-)

Pill Popper

Hi,  my name is Stacey and i am a pillaholic!

Yup, it has come to this...I mentioned before that I bought a pill organiser - good thing too!  It's become very handy...

• every morning at 9 i have to take 2 (sometimes 3) and 1/2 pills...at 5 pm, I pop 1 1/2, at 9pm, i take 1 and then at 1am, it's another 1 1/2!

I eh go lie, I worry sometimes about overdosing because suppose i take the wrong pill at the wrong time.  Did I mention that all but 1 are small and white?!?!?  I have reminders on Outlook at work for during the week and on weekends, my phone alarms to remind me.  Of course at 1am every morning, my phone goes off.  I am actually becoming used to that (it's waaaaaaay past my bedtime during the week) but I've noticed that I have started waking up close to 1, so it's almost as if I don't need it anymore (i'm not going to delete it tho).  

Back to the organiser - it's helped me keep on track tho (guess that's why it's called an organiser).  Those odd times when I wonder if i took the pills or not, I just need to look in my handy dandy compartment to see if it's empty or not :-)

I've said this before and I'll say it again - i know that my experience is certainly not the worst and for that I'm extremely grateful, but being sick still SUCKS!

EFFIN Side Effects

I spoke too soon...the side effects are not from the new drug (thank God!) - it's the Spasticity medication.  I started in March at 10mg, 3x a day...I've slwoly increased the dosage and on Monday, it was increased to 20mg, 3x daily.  Well!  HMPH!!  I won't bore u with the details, but suffice it to say that I had a rough Monday nite and I was going crazy!!!!  I had NO IDEA what the hell was going on!  Good thing that G had her thinking cap on and reminded me that the dosage of that drug was increased.  Prior to this I had no side effects.

We pulled out our  "medical degrees" (from the internet) and did the research and i as it turns out I was experiencing classic side effects!!  I must say that I was thrilled to finally understand what was going on and immediately contacted my Dr.'s office.  Just before I'd increased to 20, i was taking 15mg and that was tolerable AND i was benefitting from it (10 mg wasn't doing shit for me).  They have taken me back down to 15 and I am happy to report that I had a good nite's sleep last nite (I was worried at first, but that was totally uncalled for).

Not In My Head

I really am showing an improvement!!!  

A couple people who saw me this weekend mentioned that I am walking better!  I think too that the medication for the Spasticity is finally doing something as well because i noticed that i haven't been very stiff lately either.  I eh go lie tho, sometimes i feel like a drug dealer/addict carrying around and popping all these pills when my various alarms go off.  But it's all good...