Category: Random Thoughts

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…

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