2013 in Some Pictures

In Vegas, we had to ask for the accessible shuttle to take us to the hotel

the 7 blind mice…whose idea was this?  who knows…but we having good times in Vegas

Let the good times begin in Miami (Miami carnival)

Assenna Orgenetnom, how meh boy (who i didn't know) woulda pull this off with a basket in front???

Driving thru the party - doh get tie up!

MS Walkers 2013

Everyone loves the scooter I

this is an old picture…but everyone loves the scooter II

Everybody loves the scooter III

Good times in Vegas cont'd 

Getting my eyebrow pierced

Ready for 2014...

Helllllloooo 2014

Happy New Year to you and yours from me

Pimp my Ride

K….this isn't mine but this is exactly what it looks like and i have a basket in the front

Needed a upholder because driving, steering and holding a cup just didn't go together

My cars have been Stax1, Stax2 and Stax3 - i thought this made perfect sense

My cane is actually only "posed" for the picture because the cane holder that can actually be used with the scooter was too expensive

 so…the scooter also has a basket (as i mentioned up top).

• Without the basket, it's cool
• With the basket, it loses all its "coolness" (in my book) so the only time i really use the basket is when i go to check the mail :-)

 Hope you had a lil chuckle…i gone so...

HO! HO!! HO!!!

Here's hoping Santa brings you all everything you asked him for and more :-)

No MS Round Here

Fellas…we hadda vote!!!  Voting closes at noon tomorrow…for all the Trinis out there - allyuh know how we do - we hadda get we boy in first place.  Everybody else, you can vote however you want (i suppose) but we looking for your vote for Bunji Garlin - Differentology for song of the year.

• MTV Iggy's Song of the Year

Okay

Well things kinda worked themselves out sorta - thanks for all the prayers and well wishes across the miles/ocean/etc. I got to the MSCA early yesterday because, of course, I wanted to buss a small lime with everyone there whom I haven't seen in 6 months.  Talking with the nurses (in the infusion room) was a MUST because (as much as I like my doctor), I prefer talking with the them and getting their feedback/opinions.

One of the first things that Anita asked when I talked bout going back on Tysabri was, "what is ur titer levels?" Eh???  I had no idea what she was talking about.

Turns out, there's now a test to measure the level of JCV antibodies in my system. This particular test gives them an idea of the risk of actually contracting PML. They started doing that test AFTER I stopped. If course, nothing is absolute so jes because I may be in the "safe zone", doesn't mean that I WON'T contract it, but it'll b slightly comforting to know that I'm "safe"- am I making sense?

Anyway...they drew blood yesterday to do that test. I felt really good (armed with this info) going in to talk to Dr. Gilbert. I explained to him that my disability is much worse - he could see it himself - and he was in agreement that if my titer level comes in at less than 1.2 (that's the number of the hour), tysabri it is! Fingers/toes/eyes/legs/arms all crossed that this happens...I'll worry about the money involved later. 

If I come in greater than 1.2 (I'm also going for an MRI-if that shows additional scarring means Tefidera is NOT doing what it's supposed to doing) I'm going to switch to Gilenya (in his opinion, it's a better drug), 1 of the other oral options available.  And then he told me bout Lemtrada!

It's been submitted to the FDA for approval...the MS community (researchers,doctors, everyone involved) is hopeful that it'll b approved soon (it's already been approved in Europe and Canada). From what I read last night (this article), this drug is coming with at least 20(!!) years of research. Wow!! Of course there are side effects, but that's a story for another day over some drinks.  Dr. Gilbert also shared that the drug is even better than Tysabri and is only administered (by infusion) twice a year. 

So much has been done (and is currently being done) wrt MS these days, I guess now is as good a time to have it as any. 10/20 years ago, there weren't as many options, it took so long for patients to b diagnosed and so little was known…

alright…well on to ur regularly scheduled programme - i gone so!

Day of Reckoning

I go to Dr. Gilbert today. Times like this, I wish I were a kid again - my parents would have to make the decision for me. Steups...being an adult is overrated.

• Do I tempt fate and go back on Tysabri?
• Do I try 1 if the other oral drugs available?

Additionally, going back on Tysabri means that I'll hadda come up with at least $3,000 for out of pocket costs. GRRRRR!!!  I really am torn tho. I eh go lie. 

Go back to Tysabri 

•  i know what to expect or do I? Just because I had a good experience before, does it mean I'll have another good one? 
• More money
• Proven to improve disability in most patients 
• Shots - having to find my non existent veins
• buh AA…how i forget this before???  (updating with this after i published) high risk of contracting the fatal brain infection that does appear and u may not even know

New Drug

• Have ABSOLUTELY NO IDEA what to expect
• U have to b observed for 6(!!!) hours the first dose because it completely slows down ur heart rate (will slowly go back up (hence the 6 hour observation period and generally go back to absolute normal within a month)
• Oral (once a day)
• May improve disability

Decisions...Decisions...

Parang

Nothin like ah lil parang to get you in the spirit

Traveling

I talked about traveling with my scooter the last post buh we talking traveling again...

So they let me drive the scooter all the way to the plane door. They treat it like they would a stroller so I get a little claim tag to hang off it. I drive it down the ramp, park it there and then they bring it whenever we get to the destination right back in the same place so I just walk off the plane and ride away.   It's great...and remember that time a while back when they changed the gates on me and the rude ass delta gate agent asked me if I cyah walk? With the scooter, I can just ride away and leave her ass in my dust :-)

But of course, there are cons...I actually do feel a little more pressure after I park it. I think it's because I'm by myself so the air hostess has to realize (or made aware) that I need help (the other day I swear the ramp was bout 2 feet lower than the plane so my step into the plane was lil problematic) to come help me. And of course, u can imagine how well my body works when I under pressha! Ugh!!! Walking off is always better than walking on because I'm so much more relaxed. 

The other thing that I don't like about it is going thru security (only in the kissmehass winter). During winter, is boots, jackets, scarves and everything else you hadda put on to try and get warm...all of which hadda come off. Fuckin-A!!! Well I've started putting on a sad poemeone kinda face and begging not to take off my boots (I will surely miss my flight if I had to spend time putting them back on) and when I was heading to TX for thanksgiving, I kinda manhandled a man to help me with getting the security bin and maneuvering out of my jacket (I was very nice). He had a badge so I knew he wasn't a passenger and he was extremely helpful...but the point is that had I a chair, the attendant would have helped me with all that.   

But...all that is small ting. I really hope that my experience with any other airline is the same. I was concerned about different airports (because Atlanta's is one of the best when it comes to accessibility) but so far so good.

btw...I typed this on my phone using the Blogger app.  It's not as frustrating as Dragon altho it's a little more work but at least the stupid white border is not there.  Ah gone so!

Hi

It's been 5 months… I haven't posted since July.  It started off as a result of my being busy busy busy at work.  For a few weeks back then, I barely knew my ass from my elbow because I had so much shit going on and then when things eased up a bit and I actually had time to publish something, my left hand started working against me and typing became the most frustrating/annoying/depressing/fill in whichever word you’d like here and so, I just stopped doing it (on my personal laptop).  Remember, I have the Dragon software installed on my work laptop so things were much easier there.

A few weeks ago, it occurred to me that I could type on the work laptop, e-mail to myself and then publish using my Mac and so this is how I’m publishing today (how did this never occur to me before???  LOL)…i remember now too that i don't like the white border that's placed around the words when i do this - but small ting i spose.

so… Where to begin??? Bear with me, this may be long - it's been 5 months!

Well lemme start with the medication.  I don't like Tecfidera; I really miss Tysabri and would like to go back on it.  Tecfidera is the third disease modifying drug that I’ve taken – I’ve been on Copaxone, and Tysabri as well - and I can say with confidence that Tysabri was the best and my favorite.  Now don't get me wrong, I still have no side effects from the Tecfidera and it may be doing its job (slowing down the progression of the disease), but it does nothing for my general feeling of well-being and my disability has definitely gotten worse since I came off of Tysabri (which has shown to improve patient disabilities).  I don't trust myself as much as I used to, I'm not as confident as I once was (especially when stepping up) and my general feeling of well-being has definitely diminished.  I'm still positive and upbeat but… Anyway, I go to see my neuro on 12/17 and will talk to him about this then.  I went to see him sometime in August and decided at that time not to make any changes because I'd only been on Tecfidera for 3 months so figured I'd give it a chance… well its time is up!  Like I said, I really want to go back on Tysabri but is that really advisable?  I’ve been off it 8 months now; doesn't that reset the clock??? (Using Dragon to type this is extremely frustrating - it still doesn't understand my accent - FCUK!!! Using it for work is not this bad because e-mails at work are much shorter)

My handy-dandy scooter was the best money ever spent!! Unfortunately, I can't use it when I'm on my own because it needs to be dismantled and placed in the car, but boy has it made my life easier on so many levels.  As usual I went to Miami carnival this year. I'd decided from early on that I was going to take the scooter with me to go to a specific fete down there.  Some of my friends who live in Atlanta drive down for the weekend and I was going to send it with somebody but at the last minute, I decided I would travel with it.  Well let me tell you - that was one of the best decisions I ever made (in my life I think :-) ).  I called Delta and found out what I had to do and braced myself for a trying experience - it was one of the easiest things I've ever done!  First of all, I can't say that I've ever seen anyone riding around in a scooter in the airport, but there I was riding up and down the concourse – just because I could!  Going through security? A breeze!!  Using the scooter gave me so much independence that (like I said), I was just riding all over the place, just because I could :-).  It was also easier on my pocket because I didn't have to tip anyone for pushing me around and when I went to Vegas in October, I saved $125 because I didn't have to rent one. I want somebody to tell me I cyah travel with it in the future; I DARE YUH!! - aye allyuh, I not sure when allyuh getting another post because this is really friggin annoying - but I digress… then in the party in Miami, EVERYBODY (including people I didn't know) was bussin ah wine on me and it - it was hilarious… a complete hit! Oh… And how could I forget, I even secured 2 (long story about why I have 2) cup holders for it – driving it while holding a cup was a lil difficult, so solved that problem!!

The masquerade ball happened again last month.  It wasn't as well attended as it was last year, but those who attended had a good time nonetheless.  I must say, I was really touched by the number of folk who were there from the MSCA (including a doctor who’d only seen me once).

What else, what else… Christmas is nearing and I’m yet to get into the spirit but hopefully soon.  I can't think of anything else to write nah; I know I'm missing some stuff and will probably think of it after have published this but say wah, so it go sometimes.  Besides, I don't want to bore you too much for right now.  So until next time, allyuh hol it dong!!  I’ll be back – I promise