Gillenya


Gilly!


So…can’t really say too much bout it yet but I’ll say this. As long as I continue down this path of “no negative effects”, I’ll keep taking it. It has a number of things going for it and is better than Tecfidera (in my book).

  • First of all, it’s a pill – HALLELUJAH! I remember 9 years ago (wow), sitting talking to the lady and I had 4 choices.  The bottom line?  Decide how many times I wanted to inject myself…steups
  • It’s once a day – just have to keep up with one pill everyday and i can take it anytime with or without food (another pill I take is extended release so I have to be cognizant of that and spread out the doses)
  • It’s much better looking than Tecfidera – bright aqua like colour vs pale yellow and white…i always link bright blue to poison
  • It’s smaller than it too so for people who cyah swallow pills, J, it easier to take I’m sure

Of course, you hadda take the good with the bad. I got my first shipment last week Tuesday, opened it up and I don’t think the manufacturer packaged it with MS patients in mind.  When I get pills from the pharmacy, they are either prepackaged or come in a generic looking pill bottle (with a spin off cap) because the pharmacist had to count them out.  Well Gilly is prepackaged…in a box…u know the box with the foil on one side so u jes hadda snap out the pill? Well I don’t think that packaging is very MS friendly. Luckily for me, I’m right handed and my left hand is the problem hand so I’m able to get them out without too much drama buh wha bout others who cannot?  Won’t it just be easier for us if it were packaged in a bottle?  Of course!!  but you know the drug companies are all about that bottom line – they probably save a few $$$ using the box/tinfoil packaging.

anyhoo, time will tell what Gilly is all about – i’m being and thinking all positive thoughts!

That MS Conversation

I think I mentioned that I started a new job the other day; still with the bank, just a new position. Now that MS is part of my personal life, it has to b part of my professional life too. When I was going thru my  issues leading up to my diagnosis back in 2005, I decided to keep everything to myself.  I remember the week after my Lumbar Puncture I’d been providing site support because we were bring a newly acquired bank on board and I’m really not sure how I pulled it off but I remember one day having to tell my trainer that I absolutely had to leave because the pain was too much to bear (have u ever thrown up in a cup while driving because u’re feeling so terrible that getting home was more important than anything else at that moment? It’s something that I hope I NEVER have to experience again in my life). I don’t remember when I told my then manager that I’d been diagnosed but at that time, it hadn’t started rearing it’s ugly head. 


In march of 2007, I switched positions and again, I had no issues so no need to share with anyone and that’s when I started working from home so…But then it was April and sh** started hitting the fan – I had to come clean. I scheduled a call with KW and told her about my troubles. The conversation went very well; in fact she was the one who suggested that I reach out to the society and ask bout MS facilities that eventually led me to home #2, the MSCA.  Throughout our time together, she remained one of my biggest supporters and didn’t give me any stress about anything (Friday afternoon off every 4 weeks when I was on Tysabri and luckily it never got in the way of my production) but alas, she left in June of 2013.  My new mgr then luckily was one of her peers so she already knew that I had it but I still had to have “the conversation” even tho Tysabri was no longer in the picture. 

Fast forward to January 2014 and I had to do all that  stuff to start Gilly. Ugh! I had to have “the conversation” sooner rather than later and I was actually dreading it; kept putting it off because I really wasn’t ready…but, it was inevitable so once again, I scheduled the call.  


Now, there’s a certain reaction when I mention “multiple sclerosis” that I didn’t get while we were talking and in the middle of my spiel I stopped and said, “ok. I have to ask, do you know something about it because that’s what I’m picking up from you; this is not the reaction I expected at all” That’s when she said that someone to whom she’s close has it and, essentially, she’s “in the know”. She went as far as to say that when I told her that I had something personal to share, she was wondering what it was and was glad that I threw her something she could handle vs not. 


I’m not stupid, I know that again, I’m lucky.  I know that supportive management is not a given and I may (or may not) be in a rare situation. A friend once shared a situation where someone made the decision to keep their diagnosis secret because they were afraid of what the fallout could be. I don’t think there’s a right or wrong decision, it’s really up to the individual – they need to gauge their situation and determine what’s best.  One thing’s for sure – there’s certainly no easy answer.  

Well…back to ur original programming… 


sigh…Carnival

It came…it went.

The fact that I’ve decided that I’ll never go back home for carnival is a forced, self imposed ban doesn’t make it any easier to get thru every, single year. Between the music released (because i can’t help but listen and be engaged because let’s face it, i am a carnival jumbie “to meh heart”), people leaving from here, ALL the Facebook posts, getting a small taste of it because I was there the 1st week of February – GRRRRRR!!!

I think those of us here who are actually interested in it (everyone but maybe 2 people) just count down the hours to Ash Wednesday when we know it DONE!!!

my 2 favorites this year…

Skinny Fabulous – Behaving the Worst

Machel Montano Epic

The 1st Dose

I had to be at the urgent care facility at 7:30 am on 3/14. 


It’s “normal” for the first dose of Gilly to slow ur heartrate down considerably, hence the reason for the EKG prior to going on it. I guess it doesn’t make sense to go on it if one has a weak heart right?  Anyhoo, I suspect that’s also the reason that I had to go to an urgent care facility to take it. 

The nurse came at got me around 8ish and led me back to my own private room that was furnished with a TV/DVD player (and movies), comfortable looking chair (wasn’t comfortable AT ALL but i made it work), a fridge, a gurney (I coulda lie down and sleep I suppose), snacks…what else? I’m sure there was something.  Then she explained how i’d be spending my day. First thing on the agenda? Another EKG (I spoke to someone on the phone Friday who asked me if I’d had an EKG…I told her I’d had a million) then the doctor would come in to watch me take the tablet (he said, “they say I have to b here when u take this tablet) and I’d be monitored for the following 6 hrs.  The first hour after taking it Julie (her name was Julie too) came in the room every 15 mins to take my pressure and pulse while seated AND THEN repeated the process while standing. After the first hour, for the next 5, she came in every 1/2 hour! At the very end (bout 2:30), guess what had to b done!?! You guessed it…yet another EKG!



I have to admit, that was one of the fastest days; the time passed so quickly – it was time for me to go in 2 2s. I figure is because Julie came in so often – who knows. Also, I was completely normal for the entire time. I believe there was some fluctuation but nothing out of the ordinary. So…all in all, I have no complaints about Gilly. I came home that afternoon with 13 pills (a starter pack) and I’ve been ok ever since – no dizziness, light headedness, nothing. I placed those pills in my “am” slot because I take those tablets religiously (I’m not the most compliant for the pm) and if I miss any of those 13, I’ll need to go thru the 6hr monitoring again – NOT HAPPENING!

UPDATE:  i published this this morning and completely forgot to take my am pills today – HAH!! so much fir taking them religiously eh… just took them at 1:32

The next step?  Call my specialty pharmacy to setup the monthly regular shipments. 

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