so…

i’ve been trying to figure out how i can make this post short and sweet but…

anyhoo, Miami was nice altho i kinda wished i was able to go to at least 1 more fete buh say wha…lime cyah done!  we had a time and a half and like i said in my last post, i felt like i was only there for 2 days as opposed to 5 – steups!!  but…my story:

  • i think i’ve mentioned before that i cannot sleep in complete silence; i could be dead tired and as soon as i get in the bed if all is quiet, i’ll be wide awake.  well, the room in which i was staying had no TV and so every night i was listening to my music on my phone to drift off to sleep.  well Saturday nite when i got back to the house, i didn’t have my phone and i had the BRIGHT idea to take 2 sleepy pills so that i would fall asleep fast (i was going to take 1 anyway, so i figured it would be no biggie if i took 2).  my idea worked and i went to sleep.  5 hours later, my alarm went off @8am for me to take my normal set of pills (4 when i’m off) with includes yet another sleepy pill – had i really thought about it, i probably wouldn’t have taken yet another sleepy pill…i went back to sleep.  about 11am that morning (Sunday), i stirred – it was time to start the day – and my mouth felt like it was full of cotton balls (DRY AS PITCH) and i was just feeling out of sorts and couldn’t really put my finger on what was going on and then i remembered that i may have taken too many sleepy pills in too short a short period of time – FCUK!!  Ari and I did some research on a Zanoflex OD and i didn’t seem to be exhibiting any of the symptoms but needless to say i stayed in the bed for a while longer.
  • fast forward about 3 hrs – i was feeling ok, back to normal, everything was fine.  i don’t remember exactly what i was doing but i happened to look at the “Sunday” pill box and EVERY SINGLE PILL WAS GONE (all 6 for the entire day – 4 for the am and 2 for different times later in the day).  oh shit, had i taken ALL six pills that morning?  i had no idea… i was very sleepy that morning (of course) but i honestly couldn’t remember what i’d done when i took the 8:00 pills.  i’m always very careful when i take them, especially because most times i’m lying down while throwing them in my mouth – WTF?!?!?
  • fast forward 12 hrs or so – 6:30 Monday morning…i woke up for 2 reasons – i had to use the bathroom and i was under the blanket and was extremely hot!  (i’ll skip to the end here)  i had to take 5 steps to the bathroom from the bed and as i came out at the 2nd step, a wave of nausea HIT ME, the 3rd step?  i broke out in cold sweat…by the 4th (even tho i was willing myself to just get to the bed) i couldn’t take it anymore and i fell onto the bed but because of the angle with which i fell, i didn’t stay on and slid right off.  i must say tho that at that point i was laying on the concrete ground and it felt so good because it was cool against my cold sweating, hot self.  i wasn’t by myself in the room so the calvary eventually came in and picked me up and got me back into the bed.  By that time, i was ok and was able to drift back to sleep – whew!!
was it all related?  i don’t know…i’m glad tho that all involved were there and able to help me and that things went back to normal right after.  No need to tell me that i did shit or i need to be more careful or anything like that.
like i said, this time it wasn’t a funny story but all’s well that ends well.

Miami

Well. It’s over and what they say is really true,”time flies when u’re having fun”. I feel like I was only there for 2 days. I got there, blinked twice and it was time to come back. Steups!!

As usual, I’m back and the body is getting over the fact that we were partying up a storm so things aren’t quite back to normal as yet.

Also as usual, there is a story altho this time it isn’t the usual funny story. Ugh! But all’s well that ends well so everything is fine. I’m using my phone to type this so I’ll tell the story tomorrow.

Anyhoo, so ah gone so…just wanted to give a quick update.

A lil Bit of This, a lil Bit of That

well…i went in for my infusion last week and the results of the 2nd JCV test came back and i’m still positive (no surprise there (on my part)).  I also had my regular 3 month MRI and was told that , “i’ll look at it and if i see anything amiss, i’ll come find you”… noone came so i guess it’s safe to assume that everything’s okay – i’ll call tomorrow to confirm, just in case.

The masquerade ball in November is moving along nicely; in fact i had to do a short promotional video for it – pure kicks; was a lil movie set complete with teleprompter, props, a gofer and a cameraman – too funny. now, i have to start working on my speech about which i’m so excited, i cannot contain myself – NOT!!!  I’m deathly afraid of public speaking of any kind.

Courts came to see me last week – we had a great time and while we were sitting in the infusion room, he coined the term, the “OB Shuffle”to describe my walking.  One of his reasons was that i always talk about how slow i walk – “if i walk any slower, i will stop” etc, so his reasoning was that so whomever i say it to can retort to me that shuffling is supposed to be slow so GET OVER IT!!  HMPH!! (yes, i tend to say it a lot) 🙂 alright alright

Heading to Miami carnival on Wednesday nite, so hopefully, as usual a good time will be had by all (we are really looking forward to it this year) and i will be without incident.  everything’s been calm for a long time so hoping that that trend will continue.

what else…what else, i think that’s it for now; nothing else to report – oh i got stuck 4X on Friday in case anyone’s curious – can’t wait for BG-12’s approval and availability (word on the street is December).

alright, so ah gone so…

the Waiting Game

i’m playing that waiting game again – patiently waiting to hear the word that the new drug manufactured by Biogen has been approved by the FDA (it was submitted earlier this year for a “fast tracked” approval – 10months time which would mean that we should be hearing something any day now).  I’m this close {-} to deciding that i will switch to it once it becomes available just so that the dark cloud looming over me right now (the risk of contracting PML) can go to hell!  of course, it will be a new drug…so there are risks there too but…

I really do hate to have to make these kinds of decisions.

yesterday my phone rang; it was Cmus and he said that he’d seen something about “something called BG12 on CNN that has proven to slow down the progression of MS so i didn’t know if u knew about it, so wanted to share…”i instantly got excited because i thought that it was approved.  Alas, it hasn’t yet but i couldn’t believe that i’ve reached the point now where i get excited because new drugs may be available to me – whoa!  when did that happen, funny how priorities in ur life change as things happen.

even tho the drug companies have made progress over time, it’s unfortunate that all the available therapies are only for patients with the relapsing remitting form of the disease.  there isn’t anything available for patients with the progressive form.  I’m assuming (i don’t know) that they can take the other drugs that some of us take (Baclofen, Zanoflex etc) but there are no disease modifying drugs available for them.  it’s time that someone/a company takes that on.

anyhoo, so more to come…u know i’ll let allyuh know how things progress.

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