Old Years

Happy New Year folks!!!!

Cheers to a safe and prosperous new year

MERRY CHRISTMAS!!!

i'm a lil early but...

i hope that santa is good to all of u.  he's been good to me so far, i'll be in my in favorite place - CANNOT WAIT!  if i've been a really good girl this year, i'll come home with a fatter/heavier pocket :-)  

Anyhoo, all of you be safe, be merry, drink plenty sorrel and eat plenty ham...

And the "Winner" is...

Tysabri!  I'm sticking with Tysabri. 

Yeah there's a possibility of PML, but at least i know that that exists and there is a plan in place to mitigate.  My feeling is that Gilenya is just too new and i'm willing to bet my last dollar that something is going to emerge that they didn't anticipate a few months/years down the road.  I may lose that bet and with any luck i will, but u know how drugs go!  There already have been some things happening too... a few people have died including 1 person who died 24 hrs after taking their first dose - HELLO!  there is still investigation pending into whether the drug had anything to do with it but...

I'm not stupid, i know that there are risks with all drugs and death probably is the extreme case but i'd rather deal with the known risks of Tysabri than the unknown (for now at least) risks of Gilenya.  We (my neuro and I) talked about the 2 therapies and he was also somewhat against my starting Gilenya.  *side bar* Sometimes the way he talks about Tysabri tho, i wonder if he's on the baord of directors or was instrumental in creating the drug.

Anyhoo...so i will continue to endure the games with my veins (got stuck twice yesterday), the MRIs every 3 months (did i ever mention that as far as I can tell, i have NO side effects from the Tysabri?) and the knowledge that i'm at a higher risk for development of a brain infection to stick with "the devil i know".

Dreams Suck Sometimes

Friday nite i dreamt i was at a party and dancing up a storm and walking thru the crowd dancing...i was so happy and having such a good time...

and then i woke up!  Steups!!

this is the reality...

Christmas Spirit

so i eh really have any spirit this year - i'm just counting down the days to board the plane to Vegas.

• Some people say their favorite vacation spot is somewhere with white sand, crystal clear water and a drink with an umbrella - man, send me straight to Vegas - love that place.   

Anyhoo, so since we not doing Christmas really, i havent really gotten into it...but what is it about Parang, Soca Parang and traditional Christmas music that does the trick?  I've been listening to it for the past 2-3 days and now i can't wait to make sorrel and rum punch and stock the fridge.  I think that the tree is also going up pretty soon too.

Enjoy!

It's Christmas - Baron

Carol of the Bells

Decisions, Decisions

so next week Tuesday is the appt. with my neuro.  I will have to decide whether i want to stay on Tysabri or not.  As i said before, the one thing i know for sure is that i cannot go back to injecting myself so the only other option i'll consider is the new oral drug, Gilenya.   If i'm to be truly honest here, have i given a whole lot of thought to what i'm going to do?  no!  i really still am not sure...

• Fear of the unknown is something that i've struggled with in the past and i think that this is a classic example.  Gilenya was approved in the early part of this year (or late last year).  I feel as if it hasn't been on the market long enuf for "them" to really really have a grasp on how it could affect the masses - 2 years from now, "they" will discover that it actually causes patients to grow an extra limb!   
• Let's not lose sight of the fact that this is an oral drug tho!  WOOHOO!!!

• Tysabri is supposedly the most aggressive drug on the market and does GREAT things for patients.  Has it done GREAT things for me?  no, not really, altho it is working because there's been no disease progression, so it's done "GOOD" things for me, but i wouldn't say "GREAT"
• We've finally found a vein that doesn't mind being stuck and giving up the blood, so the procedure is not as dreadful as it used to be
• let's not lose sight of that higher risk of brain infection tho.   Great!  just friggin great!

Decisions...decisions.  what to do, what to do?  I cyah lie, i think i kinda want to stay on Tysabri but...

Oye!

Last Saturday I was at a party.  I was sitting on my chair, looked around at everybody dancing up a storm, enjoying themselves and said to myself, "Now, why the fcuk are u really here?"

I enjoyed myself and got bouff when i brought it up after, but at the time, i just couldn't help it :-(

High Maintenance

in my last post, i mentioned that i've become very "high maintenance" ...it's so true - it actually is a lil disgusting.  Everything has to be just right for me to participate.  

• we going to Carnival somewhere; we hadda know bandleaders or DJs so that i can get a spot on d truck - I cyah be on the road
• we going to fete somewhere, we either walking with a chair or (again) know the promoters so that a chair is organised for me in the party
• i want to buy a shoe, i have to be mindful of the heel (i almost need a cobbler to make my shoe special, because who knows if i'll ever find what i need)
• i have to go anywhere, i need to be mindful of parking - how long is the walk from the car to the door blah blah blah

and the list can go on...Now, don't get me wrong i am grateful that we know promoters/band leaders/djs etc, because it allows me to continue doing the things that i like and enjoy life as normal and they all know the situation, so nobody gives us a hard time.  On the flip side there are perks...i sail thru the security line at the airport, board the plane before everybody else, have prime parking but that's beside the point for this post.

the tickets to Vegas are bought!  woohoo!!!  but of course, i have to think about being in Vegas (a walking city) in my condition (i almost didn't want to go at first).  So...

• I had to call the hotel to see if they have rooms with walk in showers - i discovered (not the hard way - thank God) that i would prefer NOT to climb into a tub to take a shower.  That never occurred to me until recently because i don't have a tub in my bathroom; i have a walk in shower.
• the last casino i went to had scooters for rent, so i figured Vegas MUST also have them.  but then i started thinking...if i'm there for a few days, i don't want to have to rent it out daily (it'll be too costly!) - what if there is a long term kinda thing available?  and wouldn't u know it? there is - so i'll be good for my entire stay

My point is...i can't really afford do things on a whim anymore.  I really have to stop and think things thru, make sure the conditions are just right, make sure all my bases are covered so that i'll be ok before getting into anything.

it sucks!  but it is what it is...

Yesterday

How fitting that yesterday was Thanksgiving (here in the US) and the 2nd anniversary of this blog.  Amongst the many other things that i'm thankful for, i am extremely thankful for all of you - my readers, my supporters (virtual, across the miles and here with me) and all those who've offered me a helping hand over the years.

BIG, BIG THANKS TO U ALL !!!!

The Oddest Thing

so...

i can't walk in heels but i can't walk in flats either!!  WTF?!?!?

if i try to walk in heels, i most probably will break my ass - don't know that for sure but i'm willing to bet my very last dollar that it will happen.  These days, walking in flats too (no heel whatsoever or barefoot) is 1 of the most difficult things that i have to do - I haven't fallen yet but i won't be surprised if it's in the cards.  In fact, when i walk barefoot, i tend to walk on tippytoe to compensate - it's just the oddest thing.  I haven't figured out why that is altho i think that maybe it has to do with my sometimes dragging feet?  who knows...

I'm highly upset now because the pair of boots i bought last year (when i came to terms with the fact that heels were a thing of the past) are flat - I've worn them once or twice and i cant walk in them either so i have to give them away (and they are so cool too).  Having MS has made me very high maintenance.  Everything has to be just so or just right for me to participate/handle/be part of.  When i go shopping for shoes now, they have to have the perfect heel so i can walk in them; can't be too flat, can't be too hight, can't be too narrow, can't be too wide - steups!  

just a pain in the ass if you ask me!

Nothing to Talk About

It used to be that i would panic when i didn't have anything to write about.  in those days, i used to publish every day without fail.  I'm a little different now - i don't panic, i think of it as "woohoo, things are stable" or at least i don't have anything interesting to share...it kinda bugs me a little, because i don't want anyone to lose interest, but i really don't have anything of note going on...hmmmm.

Anyhoo, i had my 1st of the 3 month MRI rotation on Friday and i'll either give MSCA a call or wait until i go to my neurologist in 2 weeks to get the results.  One of the things that you have to do when you get an MRI is remove all steel (jewelry included).  I have a few piercings and 1 is relatively new, so i didn't want to take out the earring.  i called the piercing place to see if i could buy glass inserts and the chick told me that titanium (all their earrings are made of it) is actually safe for MRIs so no need for glass.  I went into the chamber and even though i'd been assured that everything would be okay, i had visions of all my earrings flying out my head and ripping my ears apart.  of course that did not happen! 4 or 5 MRIs in and i still sometimes have visions of my older fillings flying out too (i know, i'm a jackass).

Anyway, thanksgiving is coming up and as i mentioned in my last post, it's going to be different this year, i'll actually be going to someone's house - looking forward to it.  I hope all those who celebrate it have a GREAT time with family/friends/whomever you spend it with.  I know that i'll be having a GREAT weekend myself.

hmmmm...Am I Weird?

I've been told in the past that i have a stone where my heart should be.  I'm not the most emotional person u'll ever meet and I'm very practical - most times.  Anyhoo, I was reading something yesterday and it occurred to me that i didn't cry when my doctor (at the time) told me that i had MS - didn't the days after either.  I don't remember how i told everyone around me nor their reactions...did anyone cry?  hell if i know.

in fact, i didn't cry until almost a year later on GA Avenue in DC when i couldn't play mas!  i wasn't crying because i had MS per se, but because i couldn't enjoy something that i'd been doing for YEARS!  funnily enough...i tear up every time i'm anywhere near the parade for Carnival (miami, DC); hence the reason i will not be going home ever again for Carnival.

those are the only times that tears have actually flowed...yeah, i have the occasional bad day/sad time but i've never been truly upset about having MS.  I'm afraid of what might be in store for the future and a few other things, but upset? no...i can't do anything about it - NOTHING at all, so y waste time to get upset.

does that make me weird/stupid/all those kinds of words?  don't know, but it is what it is...

The Holidays

so it's that time of year...i used to look forward to Thanksgiving and Christmas - i loved them both (doh mind it's the WORST season of the year) until MS reared its ugly head and i can't enjoy cooking for thanksgiving or shopping for Christmas!  For some reason, both holidays are a HUGE deal in Tucker.  We always have a larger than life spread on the table for thanksgiving (u'd swear we grew up celebrating it) and a tree with millions of gifts (most of them for us) under it at Christmas.

well MS has spoiled them both for me.  I can't stand and cook the dishes i have responsibility for and shopping online is just no fun for me!  and as usual, i am jealous of all the people out there who have no problems...

this year,  i have to find someone's else's house to storm for food (no fault of the MS) and we are hopeful that Christmas will find us in Vegas (if that's not something to look forward to, I don't know what is) :-)

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!