Today's Post Brought To U By The Number "1"

well wouldn't u know it...

Friday was my infusion (time really does fly) and guess how many times i got stuck?  ONE!!!!  she did it in 1 go...who woulda THUNK it!  I certainly didn't think it was possible after all my experiences so far.  AND, i think i've also discovered the most comfortable position too.  I think i've mentioned before, i would have never thought in a million years that i would entertain the top of my wrist (that nice bony part) - but there is the most comfortable - i can bend, move my hand freely without any issues.  I sit there for about 2 - 2.5 hrs easily so it's good to be able to move my arm comfortably.

Still don't know what, if anything, these needle pricks are doing anything for me - but hey, i guess i'll keep enduring them for now.

Angst

I am beginning to believe that I experience some anxiety when i need to be out and about sometimes.  I went out Friday nite and at times i was unbelievably unsteady; had to hold on to people and everything but as soon as I got home - no problems.  it's a pain in my ass....but...

On the flip side tho, i was out and about Saturday by myself and didn't have any problems really.  sometimes, i wonder if a cane will help me any, but then i have a vision of me and the cane catspraddling (falling in an unladylike manner) down the sidewalk; something that i'd rather not have to ever live thru *gasp*! 

I really don't think that a cane will help me any because i'll just be unsteady with it too, so for now, i will just continue to hold on to somebody else when i can and walk ever so slowly/take my time so as to not keel over when i can't.

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!

To Tell or NOT To Tell...

I've said before that i really believe that my MS is temperamental.  I swear!  If I'm at home alone or around people i'm comfortable with - no problems (for the most part)...as soon as i'm out and about, around strangers - all hell breaks loose!  I stiffen up, i'm all shaky, unstable...ayeyayaye!  shit is never nice and simple...

Monday nite, I went to dinner...wobbled into the restaurant and as always, I feel like i have to explain when I'm following the host to a table (esp if I'm by myself) becuz i move so slowly, i tell the guy, I'm going to get there; it'll take me a minute, but i'll get there.  Of course, he sees me somewhat shaky and asks if I'm okay.  Anytime I'm asked that question, I say yes...no need to get into any long story.  But then he says, looks like there's something wrong, did u hurt ur leg?  Crap!  did he have to ask more questions?  really?  This is a place that I frequent - ALOT - so I felt the need to tell him the truth, "i have MS so sometimes i stiffen up when I walk"...poor guy.  I think he got confused,  mumbled under his breath "so sorry" and got the hell out of dodge. 

It's not that i want to make anyone uncomfortable or anything, but he asked me more questions - he should have just accepted my first answer and moved the hell on.

Last nite, I went to a friends' house and ran into someone i know who hasn't seen me in a while (we don't keep in touch either).  I went into the office yesterday so i did more walking than i should have so by last nite, i was in a state....the conversations went like this:

him:  U limping...what's up?  u okay?

me: wait a minute, u don't know?  I have MS so sometimes walking is a problem

him: Nah!  Yuh lie!  i doh believe u...u joking

and he walked away...i heard later that he went to confirm with G and SD that i was telling the truth.  He honestly didn't believe me.  Again, I don't set out to make people feel uncomfortable or anything but sometimes they just don't know how to react and sometimes the truth just isn't necessary either.

#3

I'm a PRO at these infusions now.  #3 was last week Friday - everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i'm a problem child, so she is the only one who takes care of me) still hasn't figured my veins out...but this time i only had to get stuck twice as opposed to 3x the last time.  It's amazing the places that they go into as well - i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can't say if the medication is working or even doing anything...but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can't blame the Tysabri because my iron started getting low before i started on it.  I haven't experienced any of the classic reasons for iron deficiency - major blood loss being the most significant - and there really isn't any explanation for it, but hey!  i'm dealing with it and it's not such a major issue to lose any sleep over.