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...

Excitement!!!

So, yesterday I had to go back to the MS Center to get my lab results etc. to see if I qualified to go on the Tysabri.  I also had a dentist's appt earlier in the morning.  I parked my car and spent most of the morning on my feet and then it HIT me...

THERE IS AN IMPROVEMENT!!!!!!!

WOW!!!  Could it really be?  Normally, when i walk to my dentist's office; i struggle (i have to park on the street blah blah blah)...again, normally after going to his office and going somewhere else, I would REALLY be struggling.  I got home after all my appts. and I was still walking as close to normal as i have in months!!!  My feet weren't dragging as i took steps and I was actually walking "fast".  A friend of mine saw me and he could actually tell that there is a remarkable difference...No side effects thus far either!!!!  I know that it's early, so i don't want to get my hopes up too high...but...

anyhoo...so the doctor who saw me today said to me, "you're in perfect health except for this blasted neurological disease eh!".  I prefer to use some other choice words to describe the MS, but hey...So...what does this mean?  Now i have to play the waiting game (as usual).  Someone from the center is going to call me after talking to my insurance company (ugh!) to tell me my copay and set up an appt. for my 1st infusion of Tysabri.

I cannot tell a lie...even though this treatment has this awful potential side effect, I CANNOT WAIT to stop taking the stupid ass daily shot!!! :-)

The Spoon Theory

I read this today and thought I'd share...it's kinda lengthy but summarizes very well how it can be dealing with a chronic disease.  It was actually written by someone with Lupus, and is a little more extreme than I am, but works just as well with other diseases too.

The Spoon Theory

A Lil Bit of Knowledge

"They" say that ah lil knowledge is a helluva ting.  I've been on "patientslikeme" more than ever this week.  I'm on the verge of stopping that in its tracks.  Quite a few people are on Ampyra or the 4-AP form of the drug.  I'm reading all their stories (good and bad; mostly good) and i can't help but wonder "what's in store for me"?  It's been 2 1/2 days...If I'm to be honest, I have no idea if i see a difference or not.  In the back of my mind, I keep wondering if I'll have any side effects and what they might be.


As i mentioned most of the stories have been good, but as usual, some of the side effects appear to be more of a pain in the ass than anything.  I've said this before and I'll say it again, "one day someone needs to manufacture a drug that does ONLY what it's supposed to do and NOTHING more!"

Day One

I had a great weekend and today was day 1 of the Ampyra.  I've been on the patientslikeme site and I've been reading other people's experiences with it and most reports have been favourable, so only time will tell if I'll be as lucky.  I'm hoping for good things!  I would say "GREAT" but I don't want to get my hopes up too high.

so...funny story...

I had to go back to my neuro on Friday for them to read my TB test results.  I didn't actually have to make an appt for that because quite frankly i swear anyone can read those results.  I could have called them and told them that I didn't have TB.  Anyhoo, so i just had to go in and get it done.  Well long story short, I was running late...so I got to the doctor's office with 5 mins to spare!!!  The office is up on the 5th floor of the building and luckily G was with me so I didn't have to park.  I pulled up, got out of the car and G screamed, "5 minutes!  no pressha!!  but RUN!!!"  i think it took me the entire 5 minutes to get upstairs because naturally I tripped right by the door of the building - didn't fall, but i had to steady myself before i could continue...

Never a dull moment with me...

Got Mail!

so i got the Ampyra yesterday...let's see what this shit can do!  There's been a slight change of plans...I'm going to start taking it on Monday.  I decided that since no one can tell me how it will react to alcohol (altho as i've said before, the medication fact sheet does not specifically state "do NOT drink alcohol while taking this medication!), I'm going to LIME HARD this weekend and start it on Monday...that's my way of dealing.

This has nothing to do with the new treatment mentioned yesterday; i'll be taking them together.  The Ampyra has been proven to specifically improve the walking disability in MS patients, the treatment is what you take to hopefully slow down the progression of the disease entirely.

On another note, I have bitten the bullet and bought a pill organizer *GASP*.  I don't let this disease slow me down too much so i'm still limin as usual/doing my thing, but if i go somewhere, of course i have to walk with my medication (remember i'm on medication for the Spasticity too).  Now I'll have another pill as well (the Ampyra is a pill- YEA), so i got a very cute organizer thing that i can actually discreetly place in my pockets if I'm out and about.


What the?!?!?  has it really come to this???

SUCKS to be sick!!!

More Results*sigh*

Did i ever mention on this site that I hate having this disease?  Well i do...i really do.

I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine.  Good news is that I have no additional scarring on my brain.  Bad news is that i have 3 lesions on my spine.  Now, in all fairness i can't really classify that as total bad news.  It explains why I am having so much trouble walking i s'pose.  The unfortunate thing is that this is the first spinal MRI i've ever had so we have no baseline to measure against.  He is concerned because I have to admit that it has gotten progressively worse over time.  It used to be that i would have problems after walking or standing for a long time; now it's almost always ALL the time regardless.  PT helps it does, but it doesn't negate the fact that the walking problems have progressively gotten worse.  He is concerned (and he raises a good point) about what state i might be in in 6 months.  Anyone around me regularly can see how it's gotten progressively worse.  So, where does that leave me?  he wants to change my meds...

Good news/bad news.  The good news is that i will no longer have to take a daily shot (YEAH BABY!!!).  The bad news is that the one he would prefer me to go on has a side effect of a brain infection - SHEEEEIT!!!!  It's a much more aggressive medication than the one i'm currently on and i've heard great things about it but... really?  do they always have to have shit hanging over ur head like that?  can't something just work FOR u without all the bloody side effects???  It's also an IV infusion so I'll have to go into his office once a month to get my infusion - HAPPY HAPPY JOY JOY!!!!  The cost?  haven't a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.

The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system.  So they do extensive blood testing and TB testing before you are even considered as a good candidate for it.  I've done research and in this instance, i believe that the benefits outweigh the risks and I'm willing to give it a try.  He said that we can try it for 6 months and see how it's going/how I feel and re-evaluate if necessary.

Did i ever mention that I really hate having this disease?  I know that it's not the worse thing that can happen to me and for that I'm grateful, but i really do hate having it.

Got the Other Call

Just a quick update today...

It's in the mail!  The medication is going to arrive on Wednesday...I will start taking it on Thursday.  OYE!  Hopefully I too will have good news to report after i start taking it.  I eh go lie, I'm a little scared...what with its being a new drug and the side effects and all, but it is what it is.