Category: Random Thoughts

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!
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