Category: Random Thoughts

the Odds

What are the odds that “2!” of your family members have MS???  I was talking to a coworker yesterday and somehow my MS came up and she mentioned that 2 of her family members have it – not from the same side (1 is an in-law) but still!
So as we continued talking – same conversation as others really – the diagnosis, treatments and how to deal etc, I mentioned to her that at some point, i realized that it really is not the worst thing in the world to happen (not the best either if u ask me) and i just had to deal with it.  I also told her how my mother rationalizes it and she absolutely loved that outlook and thought it made absolute sense.
I didn’t buy it so i can’t return it!
Oh well…what u gonna do!
…BUT

AARRRRGGGGHHHHH!!!!

I hate Multiple Sclerosis! 
There!  I’ve said it loud and proud!!  so i went to my neuro on Tuesday and what did he tell me?  more of the same bullshit “Tysabri needs at least 6 months before we start seeing any effects”, “we have to give it time”.  He also said that treating the MS is about trying to find that balance – finding the right drugs to help but not so much that the side effects have u going out of ur mind, exercising but not so much that u get too hot and start to overheat and feel terrible, eating well but not so much that you end up depriving ur body of essential nutrients that it needs – WTF!??!  is it really all about trial and error???  ARGH!!!!
Anyhoo, so on that note, i’ve added yet another small white pill to my collection.  this one is even more powerful than the others because it’s 4mg and i only am taking 1/2 – and again, i was the drowsiest i’ve ever been in my life after i took the first one.  The difference with this drowsiness was that it only lasted about 3 hrs not the entire day like the last time – go figure.  I hope that this passes soon because it’s a drowsy, drunken feeling that I’d rather not experience again (the last time i was only drowsy the 1st day).  This one is also for Spasticity which is what he suspects is causing my walking problems these days.  Good news/bad news.  Hopefully I won’t be as stiff as I have been but not so much that my legs feel like jelly!  Shit, we all know what that means – more falling for me – WHOOHOO!!!
I hate having MS!  I’ve said it again – loud and proud.  what i hate about it the most is all the unknowns:
  • Don’t know what causes it
  • Don’t know what cures it
  • Don’t know y u have it
  • Don’t know what course it will take/how it will affect you
  • Don’t know how long you will experience what you are going thru right now   
the list can go on…and on and on.

Allright, I’m off my soapbox now 🙂

wow…

More drugs…things surely have changed eh.  Got an email today that speaks to a new drug that could get FDA approval by December 2010.  wow and this one is oral!  Will i switch?  nah…If Tysabri will still be the most aggressive on the market, I’ll give it a chance.  Now had I still been taking my “daily” shot, then HELL YEAH – no questions asked, i would have switched.  Tysabri is monthly; I can handle it – even tho my veins like to play Hde & Seek!

I’m still unsure of what Tysabri might be doing for me…Ayeyayaye!  I’m really sick and tired of this disease and all the kiss meh ass unknowns.  I swear I’m on a downhill spiral these days….they say “give it time”, “u won’t see any effects from the Tysabri for 6 months” blah blah blah.  It’s hard to do that, but i’ll do it (what choice do I really have).  I go to the MS Center this afternoon for a follow up – will see what my doctor says, but probably more of the same.

People…

People can be nice!

The other day i went to FedEx.  It was a kinda rough day in the sense that I was ah lil unstable and shaky for most of the day.  I think i know why, but that’s a story for another day.  Anyhoo, so I park in the spot right outside the store and sloooowwwwwllllly make my way in.  It was a glass door so the FedEx woman could see that something just wasn’t quite right.  Anyhoo, i get in there and I have no idea what the hell I’m doing.  (those close to me know that i do EVERYTHING online – i haven’t a clue how to act/what to do in a post office/fedex place/ups; any of those kinda stores – the other day a postal worker told me that it’s because of people like me the post office is going out of business – but as usual, i digress).  Anyway, so she actually brought me the forms that i had to fill out instead of making me walk across the store to collect them.  I was extremely grateful.

I left the store and had to go meet a friend for dinner.  As i pulled up in that parking lot, i noticed that i had a message from an unknown number (those who know me well, know that i NEVER check messages – unless it’s from a number i don’t recognise – could be Ed McMann (sp?) saying that i win the millions).  Well, it was the FedEx woman, app. I’d left my work ID behind…so I went back to FedEx, but this time I had to park further away.  well…wha yuh go do!  so i get out the car and start making my way to the store…she saw me thru the glass door and motioned to me to stay put and she brought it out to me.  I swear – i really could have kissed her 🙂  I thanked her for calling and esp for bringing the ID out and she looked at me and said, “i hope u’ll get better soon”.  Of course, I gave the obligatory “i’ll be fine – thanks” response but in my head i’m thinking…I can only hope!

My “Condition”

i hate when people automatically assume that because i say i can’t do something or I won’t that it’s because “of your condition”.  i was talking to my aunt last nite and we were talking about long distance driving.  I said that the only place i drive to is Charlotte because it’s only 3 1/2 hrs away and even that is a stretch.  she said, “yes yes…in ur condition blah blah blah”.  she’s not the first one with whom I’ve had this exact conversation to say this.  The other person kept insisting that i shouldn’t do it blah blah blah…the truth is that i don’t drive anywhere because i can’t stand to sit in a car for that length of time!  I too old for that shit!!  back in the day, we would jump in a car and drive to NY and Miami at the drop of a hat….u cyah pay me enuf to do that crap NO MORE…everywhere i go, i fly!

Now don’t get me wrong.  I know that there are some things that i shouldn’t/wouldn’t do “in my condition” – u won’t hear of me signing up for a 10K anytime soon – but i know what those are and i know my limitations.  There was a time ago when i said “to hell with it; I’m doing it” but those days are long gone.  My “superhero” days are over!

Follow Me

Get the latest posts delivered to your mailbox: