Happy Halloween

i love Halloween...it's the 2nd of 2 American things that i have completely embraced; we don't do anything for halloween at home!  Every year, i dress in costume and have somewhere to go.  In fact, last was the 1st year since i've started dressing up that i didn't do anything and it was somewhat depressing.  So this year, a friend was throwing a party and i found out about it in Sept (or so) so WOOHOO i get to dress up.  As the time drew nearer, i realized that i wasn't as excited as i normally get and about 3 weeks before the party, it hit me that:

1. i really wasn't that interested in going to the party and 
2. 75% of the fun is going to Party City (or wherever) to look for the perfect costume (or idea)...shopping online is not so much fun for me

fast forward 1 week prior and all of a sudden, the Halloween Spirit hit me in the gut!  I want to go the party AND i want a costume!

So since i have the cane, i figured i would incorporate it into the costume and go as a lady pimp or something, but the time i was done browsing, i decided on a Viking Princess.  Ah...such a cute/sexy costume right?  WRONG!!!!  the damn thing came and as cute and hot as that model looked in hers, i looked RIDICULOUS in mine; the hat was too shallow, the dress was too big and it wasn't that nice chocalte-y colour either - it was more of a baby tootoo brown!!!  the best thing in the costume bag were the boot covers!  STEUPSSSSS!!!!!  Of course, because i'd waited till a week prior, it was too late to do anything with the stupid ass thing!  i still have it, in case anyone is in need of a Viking Princess costume

I was pissed!  i still went to the party dressed as "woman with cane" and i had a good time, but i'm not going to fool around again next time :-)

Anyhoo, Happy Halloween to all!!

Finally

I'm finally back to "normal" after Miami.  If i have to b honest, i was a lil scared for a while there.  It was so strange...so good in Miami and then i come back here and was a completely different person.  I was so shaky (much shakier than normal) and unsure of myself, i was even afraid to go anywhere on my own (so i didn't).  i was hopeful that my body was just rejuvenating itself/getting over a hectic weekend, but at the same time there was a thought in the back of my mind that Miami was my last hurrah!  the end of the good times and i'd have to make adjustments.  Was I upset that i'd gone and had such a good time?  HELL NO, but...

 Well everything is back to "normal" now.  Life as i know it can go on...

   

In other news...

i think we've finally found a winner!  After 19 months of trying, we have finally found the vein that works.  For the past 3 infusions, i've only gotten stuck once and the nurses have had NO problems filling up 3 vials of blood.  I don't like to use the normal vein where everybody goes (inside the elbow) because that would mean that i'd have to keep my arm straight for 2 hrs (not happening!)...so they always have to go look for other veins to use.

Well this one on the inside of my left wrist is a winner - even I can see it sometimes!!!  better late than never i s'pose.

JCV

well...i tested positive.  positive to the JCV antibody test...More decisions to make...

what does it mean?  I was exposed to the JC Virus at some point in my life (not uncommon).  the JC Virus doesn't normally cause any disease in people but someone taking Tysabri is at a higher risk for developing PML (the brain infection) if they have been exposed to the virus.  The percentage of patients on Tysabri who develop PML is small, but i am still in that high risk category.  Since i tested positive, an MRI will need to be done every 3 months as opposed to 6.  That, coupled with the fact that every 4 weeks when i go in for my infusion i either see a doctor or nurse practitioner for a mini exam is the plan for increased monitoring and early detection.  If i exhibit any symptoms of PML, i will be taken off of it and then i'll need to start battling the infection.

At this point, life goes on as normal.  I have an MRI scheduled next month and i go to my neurologist in Dec.  At that point, i will decide whether to stay on Tysabri (is it worth the risk?) or move on to something else.  I'll say 1 thing right here, right now.  I CANNOT go back to injecting myself, so...

After getting the results and everything sinking in, i had some "why me" thoughts and sadness started creeping in, but i quickly pushed them to the side and moved on.

ARGH!!!  did i mention that i hate MS??  i do!

oh boy...

today is the day that i should find out the results of my JVC virus antibodies test.  that's the virus that causes the brain infection when u're on Tysabri.  The virus is in all of us, but it's dormant - Tysabri wakes it up! (of course).  anyhow,

• if the test is positive and the antibodies are present, more decisions will need to be made...do i stay on Tysabri with a greater chance of developing the brain infection?  they will monitor me by doing an MRI every 3 months instead of 6...do i switch to yet another disease modifying drug? 
• if the test is negative, life goes on as usual.

of course, me being me, i have a feeling that the test is positive.  I can't help it sometimes, i tend to expect the worst and be pleasantly surprised when things work out well.

oh well...stay tuned!

I misspoke! It's the JCV or JC Virus...

Stacey Strikes Again

I love yoga!  unfortunately, it falls into that category of "things i can't really do properly anymore" so i have to find alternatives.  Well i found out about something called adaptive yoga (it's amazing how much i know exists out there now that i'm in the situation i'm in).  it's also referred to as Therapeutic Yoga and is essentially, yoga practice that's adapted to people with injuries, disabilities etc so it may be practised in chairs, with props - u get the idea.

So finally found a class that takes place after hours so i can attend and went to the 1st class last week Tuesday.  It was a good class and i'll keep going (besides which it's free so u can't beat that with a bat!)  For those who've never practised yoga before, the atmosphere is always very quiet, serene, peaceful, relaxing (all those kind of words).  At the very end of the class, the instructor will get u into a zen-like  place and u take deep breaths for a while before the class is dismissed.

so on Tuesday we are in this zen-like place, taking deep breaths innnnnnn and oooouuuut, innnnn and oooouuuut and then BRAP, BRAP, BRAP, BRAP, here comes my (noise pollution) alarm.  It was 8:00 - time for my medication!  Imagine my horror (altho i couldn't help laugh to myself)

Of course, my phone was in my handbag, so i had to dig for it and take it out, so it only got louder and more obnoxious!  Did i mention that it was a small room with about 8 students????

Ahhh....more happy times!

Perspectives

hmph!

went down to Miami and is pace right thru and had NO drama/incidents.  Came back here and trying to get back to normal and i've fallen twice already since Tuesday!

FL Stories

So like i said, went down to Miami last week Wednesday and had a whale of a time...partied like it was 1999 and just plain ole had a time.  I didn't go to all the fetes that the crew went to just because i didn't want to chance anything/push my luck, altho truth be told, i did so well, i think i may have been ok.

Allowances were also made for me on some occasions, because we knew some of the promoters and were allowed special access/privileges.  On Thursday nite, K and I were the 1st 2 patrons on the boat - i was allowed to go on before the masses - quite cool.  so we went to a party on the Friday nite and there were some steep steps to enter.  we asked for an elevator and found out that it was on the other side of the building, so it was decided that S and J would carry me up the steps just to make it easier for me.  I probably did half and half that nite (1/2 the time sitting and 1/2 the time on my feet)...it was a free drinks party and we were quite close to the bar, but all nite long, i was brought drinks, so i didn't have to walk back and forth.   At some point in the nite, i was sitting and someone came up to me and said, "U had a special ticket?  everyday bringing drinks for u all nite long!"  i laughed and went on with my nite...at the end, AC took me down the steps on his own.  Overheard by A on her way down, "buh who d hell is that?  they take her up in the party, they bring her down from the party and bringing her drinks all nite!"  A snickered and continued on her way.  HAHAHA!!

Everyone went to a Saturday breakfast fete after Friday nite's bash but good thing i didn't go to that because i heard that they had to stand in line for 2 hrs before they got in.

I was the last one to get on the boat on Saturday - after all the masses but that was also good because i didn't have to deal with any crowd or drama.  Now while on the boat, even though i was standing the whole time, best believe that i was holding on to a railing...i wasnt trying to tempt faith by standing up in the middle while the boat was sailing - that's for damn sure.  LOL!!  We didn't do the parade this year and so that was the end of any big events.  there were 2 house limes Sunday and Monday so there was no issue then.

All in all, i really had a good time down there (as usual) and can't wait until next year already :-)

will put up a few pictures later on...

My oh My

Came back yesterday from Miami carnival...it's very fitting that my last post was about how well i walk/am when i'm off or on the weekends.  I was so good in Miami!!!! for the entire week that i was there!

• went on 2 boatrides and stood up "wining (okay as best i could)" for the duration (at least 4 hrs) of both and then was able to walk off the boats (albeit a little slower than normal - if that is even possible :-) ) after them both
• walked around all day (some of the days) and still went out later the nite, without too much issue

This morning i wake up to get ready for work and...whoa!  what the heck?  is this the same person???  geezanages.  can a gal get a break?

Things that Make U Go "hmmmm'

How is it that i'm so much better on the weekends and when i'm off than during the week? hmmmmm

• Am i stressed at work?  No, only now and again but not as a rule
• Do i dislike my job?  No...there are frustrating moments, but in general, i can't complain one bit
• Am i under pressure?  Nope...i have deadlines, but i know when they are and work toward them

hmmm...so what the problem is?!?!? (loved Martin Lawrence in National Security)

i don't spend a whole lot of time thinking/wondering about it - it's just 1 of those things that i'll never understand, but 1 of my theories is that my body doesn't like being jarred awake at some ungodly hour and have to start moving prior to when it's actually ready to get up.

I do have a slightly different pill schedule.  I take the pill that puts me to sleep in the morning when i don't have to wake up for work...maybe that's it?  who the hell knows..if that's the reason i'll just have to move right along because there is no way i can take the sleepy pill in the morning during the week - i can't afford to be knocked out on conference calls and such.

Today i'm off and i'm much better than if i were logged on at my desk.  Maybe it's because i spend the entire day sitting at my desk working as opposed to being up and moving about every now and again during the day when i'm off?  again, who the hell knows...

i just chalk it up as 1 of those MS unknowns and roll with it...

WHATEVER!