Wednesday, July 27


There is an upcoming boatride in NY to which i'd planned on going.  I haven't gone anywhere for the summer and i've actually been thinking that i haven't been to NY in a long time, so what the hell - this was a perfect opportunity to kill about 6 stones at once.   Now truth be told, i've been hemming and hawing about going NY because it's such a "walking" city that i am a lil afraid of going - but a few friends i've spoken to up there say, "doh worry - we will work around that; daiz no problem"...i've still been a little hesitant.

I'll only mention 1 "name" in the following story...

so G comes home one day and says, "i got a call from person and a good point was brought up, i suppose...maybe u shouldn't go on the boatride since we aren't all going...suppose something were to happen on the boat...getting u off may be a problem..."  now, i never gave this any thought, but it is a valid point...i don't put myself in situations that i know i (or my friends) may not be able to handle, but something like this?  no....never thought that IF something were to happen on the boat....then she said, "it's ur call - whatever u decide to do is fine. I asked person why they called me and not u, but there was no real reason, anyway u'll get a call tonite"  i said to myself, "self...what are the odds of something happening on the boat; it's a valid point....hmmm" we continued talking and laughed at a few things and moved on...i continued looking for tickets.

2 days later i got a text from the person that said, "we were discussing it and we think that the boatride in ATL will be better for u to me".  i read it,  got pissed off and insulted instantly and in that moment, i decided "Fuck it, i'm not going".  i responded right away with, "it's okay - i not going".  person responded with, "what? am i not worth a call to discuss?"  At the time, i wasn't in the mood.

Now...i cyah tell a reaction surprised me - i'm not usually one to get pissed off at alot of things, but i really was pissed that day.  I think it was the "we" in the text message that did it because i was thinking "what the???!!!???" I'M the one who's sick not anyone else, so why not discuss with me - i didn't care who the "WE" was.  I also got pissed because I have MS and i can't help it nor can i do a whole lot about it so again - discuss with ME not WE 0 i felt like decisions were being made for me!!!  Well i didn't call the person until about 2 days later - after i'd cooled down, we talked about it and they tried to justify it, but quite frankly, i wasn't interested.  we have moved on from the incident and i hope that i don't ever have to  be in a situation like that again because it really wasn't a good feeling - at least not for me.

this is not to make anyone feel bad or anything like that, the person already knows how i felt and as usual i'm just telling my MS story.

Wednesday, July 20

+ve Attitude

I'm done with my pity party...i'm extremely grateful that i'm stable.  improvement would be nice, but stability is good news!

G and I had dinner with 2 friends a couple weeks ago.  P was running late so we were limin with H and having a good time for his birthday.  All of a sudden he said to me, "U are 1 of the srongest people i know" to which i responded, "why?".  I think i was honestly a little confused because i so try not to make the MS the center of anything.  The conversation went on and he continued that i am always smiling, never letting anything get me down and he thinks that my attitude speaks volumes...everntually i said thank you and we moved on...

an hour or so later, P showed up...good times, lots of laughter, drinks, good food and he says, "u know u are the most positive person i know".  it was out of left field (at least i thought it was) and he too commented on how i'm always smiling, organising a good time, limin hard and just generally very positive in spite of everything.

it's always interesting and "warm and fuzzy" to me when people tell me things like that.  i don't think of myself as a strong person nor do i think that i'm very positive in fact a more cynical pessimist u'll not find.   I have come to realize that i am actually dealing with the MS in the best way possible and in general i don't let it drag me down.  Back in the days when i would say "screw u MS" and do things that i shouldn't, the bad days might have reared their ugly heads more, but now that i know my limitations and don't do anything stupid, they are few and far between.

so...stability is GREAT - improvement will be greatER and i'll shout it from the rooftops, but until then I'll take stability any day!!

Friday, July 15

PT Assessment PT did an assessment of me this morning - it's been 90 days since i've started going...

i didn't test worse than i did when she did the initial evaluation (great news, i know!), but shit, is it really too much to ask to see an improvement (anywhere)????  On the scoring scale she uses, i believe i was 1 point better - in their book it must be at least 5 points for them to say, "yes, she's improved!" as far as she is concerned, i'm stable - good news, yeah, i know but shit!  i don't think it's too much to ask to see something positive once in a while.

Wednesday, July 13

Dr.'s Visit

It's been a while....i was on vacation last week - and what a great vacation it was! i went to my neuro yesterday for a regular follow up and nothing really to report.  he confirmed that the MRI shows no progression (good news), he was disappointed that i haven't seen any improvement in my gait from the Tysabri (bad news).  Also, the last time i was in to see him he said that they would draw blood to test for the the presence of the antibodies that causes the brain infection - well they never did that.  I assumed that 1 of the vials drawn during 1 of my infusions was for it.  I was that test still needs to be done during my next infusion and i'll get the results beginning of October.

At that point, if the antibodies are present, i will be at higher risk for developing the infection and decisions will need to be made about whether to continue and tempt fate or discontinue and go on something else - decisions, decisions (as if it weren't bad enuf that i had to decide if i even wanted to start on Tysabri in the 1st place). If no antibodies present, i'm in good shape and can continue on Tysabri.

He asked me if it's working and i had to be honest and tell him that i had no clue.  I suppose it's working because i have no additional lesions on my brain or spine and no exacerbations recently, but other than that, i can't be sure.   I was hoping for a walking improvement - so many people say great things about Tysabri, "it's the most aggressive drug on the market...blah blah blah", but if you ask me, it's on the same level as all the other drugs available - oh well...wha yuh go do?