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. 

Progress

It would be ridiculous if no progress has been made since my last post eh.  

So let's see... I came back after that glorious week in the heat and sun and had no choice but to deal with sh** (I gave up cussing for lent - every time I let something slip, I hadda give up 25c - I've improved but I'm poorer than when i first started).  I started making all the calls...I won't bore u with details, but things actually moved along very smoothly in spite of my doctor's nurse's insisting that they didn't have the results of my eye test!  Ugh!! I guess the MSCA is so big, that there are different fax numbers? So the eye place was using the wrong fax number. I wasn't stressing. As far as I was concerned they could do whatever the heck they wanted until 2/25 when I was going into the MSCA and dr. Gilbert needed to okay me for Gilly.

2/25 came and I went in...took the day off because I also had to have an MRI (was kind of a day of reckoning if u will). Well...ALL good news :-) 

• The eye test was enough to get me started and I was good to go
• My MRI is "clean" and shows NO PROGRESSION

Truth be told, I was kinda enjoying not being on an MS drug...maybe I felt like I could pretend that I was disease free? Who knows but it was time to go back on something I guess.  So...the next step was to talk to Julie (the Gilly nurse who called me first. She is extremely nice, helpful, pleasant, all those kinda words altho she does call me "Stacey Samuels". Never in my life have I ever been called that; it's always Stacey O'Brien but I digress) and her team to schedule the first appt. 

Oh! How could I forget...I was given the option to get a chest X-ray instead of the stupid TB test so I went to an urgent care facility and got that done in 1/2 hr on the night of 2/24!

Tests

Well. I went to Sears Optical Saturday. She shone all kinda light in meh eyes and supposed to send the results to the MSCA at which point I'll find out if I have to go to an ophthalmologist and have something else done *Sigh*. Why is nothing ever simple? I did speak to Julie yesterday (the Gilly nurse who called me first) and she confirmed that there's not a specific ME test that needs to be done so I might be ok...time will tell.

The TB test...so I went on Sunday to a CVS Minute Clinic, paid my $39 and got it done. I was instructed to come back in on Tuesday after 3pm or Wednesday before 3pm. I planned to go back in on Tuesday...well u know what they say bout the best laid plans. As it turned out, I'm starting in-home PT in a couple weeks and a nurse was to come here on Tuesday too so I thought,"ooooh. If she can read the test, I doh even have to go back to CVS". I called her, she could do it. I was in business.  Cept that Tuesday was the day that Mother Nature decided to unleash her fury on Georgia (it was 2 inches of snow which in GA might as well b 2 feet).

• The first thing that happened? The nurse called to reschedule. She'd been sitting on the highway parking lot for 2hrs. 
• Then I spoke to G; she too was sitting in traffic and ended up taking 4hrs to get here. I kissed that $39 goodbye because I knew that there was no way I'd get the results. Wednesday is supposed to be less cold but I know that the roads will still b a mess so I won't b out there...I HATE fcuking winter!
• (btw…today is Wednesday - some people still stuck on the roads in accidents and all kinda shit (now reaching home since midday yesterday) - steups…EVERY year, atlanta goes thru this crap - the officials doh learn?????)

I'm heading home on Friday...will be back on 2/8.  I'll deal with everything when I get back - I'm thinking hot thoughts and dreaming of a glorious week in Trinidad - I have no time for MS or Gilly.

Moving Along

Hmmmmm

So I had to call back dr. Gilbert's nurse Monday and leave another message that I just needed to know how/where to get all the tests needed to start Gilly (Gilenya - G2 coined that term). I crossed my fingers and hoped that by the time I spoke to her, she'd tell me that I could go anywhere and that I wouldn't have to trek back into the MSCA. Going there would mean that I'd have to take time off and pay to park and...and...and.  I already knew that I wasn't in the mood. 

She called back...there was good news.  I pretty much can go anywhere to get both tests done. I have an appointment at Sears optical on Saturday (made Monday) for the eye test and confirmed with a Walgreens clinic that I can just walk in any day for the TB test to be done. I just started a new job so I don't want to start taking off already. I done hadda take a sick day for my first dose. 

So...once those are done, I'll be on my way (wrote these 1st few paragraphs Monday).

U know how when you're speaking with someone on the phone and even tho u are speaking MOST clearly (and sometimes slowly) and they saying everything u actually want to hear but u still jes don't trust them and r convinced they talking shit? Ever happen to u? Well...that's the feeling I got when I was talking to the Sear's Optical lady. Anyhoo, I didn't worry, I figured they'd call to confirm so I too, would confirm that they'd b able to do the Macular Edema test.

Today is Friday so, of course I got the call to confirm for tomorrow. So, once again, I told Meena very clearly that I had to have the ME test done so I needed to b sure that it could actually be done there (I would be MOST PISSED if I get there and I'm told no).  Meena said to me, "I don't think dr ray can do that. U normally need to go to a specialist to do that."  I sighed inwardly - I KNEW IT!!!

 But then she said,"let me find out for sure and call u back." She called back...we were good to go.

15 minutes later, my phone rang again from the same number hmmmmm. I answered...it was Dr. Ray. She called because she wanted to explain why they were asking so many questions (I'd eventually had to tell somebody exactly why I needed the test). Anyhoo, turns out her best friend has MS too and is on Gilly so she had to do the same thing. Now, truth be told, she was kinda confusing me lil bit (she kept flipping between she needed to give me a referral and she could do the first exam) so I eventually asked, "ok. So u'll be able to do whatever tests needed to get the baseline and get me started on it?"   She answered with a resounding "YES".  I'm going in Saturday at 4...wish me luck!

Stax (dunno what happened to my signature)

Stax4

I like small cars! I've been told that I drive like a bat outta hell. I prefer to think of my driving skillz as aggressive, adept and able to hold my own on the road. I like small cars and prefer to drive them. Stax3 is a 2 door civic coupe and well…you've seen how big Stax3.25 is. Love my car - it's so easy to zip in and zip out when I need to.

Problems:

• Whenever the parents are here, poor things, at least one of them has to fold up herself to get in the back seat. If G and I are in the car then they BOTH have to squeeze up dem ole ;-) bones to climb in the back - not cool. 

• When I'm by myself I cyah use the scooter because even tho it can b easily dismantled, I can't do it by myself (I know that this has nothing directly to do with the fact that the car has 2 doors) so clearly I need a car that can hold an "un"dismantled scooter. 

Ugh! Stax4 was supposed to b a deep red g35 coupe but that dream is no more. I'm slowly coming to terms with the fact that I'll probably need a bigger vehicle (that's so NOT my style AND i don't like anything big) so that I can potentially drive the scooter in and b on my way. It's in my "to do" list for 2014.   I'll probably need to practise driving before I get on the road; Stax3 can get into so many little spaces.  

MS - 1, Stacey - 0 

wow!

Well whadouknow. My phone rang on Wednesday and when I looked at the number, it was all 0s. Hmmmmm?!? I answered. It was a chick named Julie looking for me and wouldn't u know it, she was a gilenya nurse. Really? So quickly??anyhoo, she was calling to get me started on the drug. Wow! Results haven't come in yet, but someone is actually calling ME to get shit moving along? I was impressed.

Julie confirmed all the necessary shit to make sure she was talking to me and then asked what I'd gotten done and when. I told her that as far as I knew I was only waiting for the blood results and that was it.

• Right? WRONG! 

All the peering the doctor did into my eye blinding me temporarily Friday? That wasn't the eye test that I had to get done. Found out I actually have to go get a Macular Edema test...woulda been nice if someone had told me that. Geez!! She said that I could call my regular eye doctor to see if they'll do it. Good. That'll save me some heartache...well. Turns out they don't do it so I have to find somewhere that it can be done. Steups!

The next bomb she dropped on me? The MSCA requires a TB test before I get started. Wait...the MSCA? The place I was just in??? Did anyone tell me that??? Nope! So now do I have to go back there to get that done??? FCUK!! The thing bout the TB test is that they inject something under ur skin then u have to GO BACK in for them to look at it to determine if u have it. I can read the damn thing myself. Steups! Well I left a msg for my doctor's nurse to call me back so I can find out if they need me to come in or can i go somewhere else for that TB test. nothing is ever easy/smooth sailing

I asked her about the waiting period between the 2 drugs and interestingly enuf she wasn't aware of any but she was going to find out and call me back on Thursday.

...it's now Friday

the nurse at the MSCA has NOT called me back…I just hung up from Julie.  turns out the waiting period between the 2 drugs is 2-4 weeks.  i stopped tecfidera last week wednesday…so, just have to get the 2 tests done and i'll be on my way.

1/10/2014

Was my birthday...how did I spend my birthday? Being poked, prodded, blinded and stuck at the MSCA!

Since my titer levels are too high and I cannot go back on Tysabri, I went in to be evaluated to start Gilenya...sigh.

I saw a doctor in the Internal Medicine department. He:

• listened to my heart
• put the stethoscope on my back while I took deep breaths
• shone a BRIGHT BRIGHT light in my eye and looked into it
• asked me to follow the light with my eyes (not my head) 
• and an EKG. 

I guess he was happy with what he saw because he partially approved me. 

"Why partial?" you say. Because they needed blood (to test for? I haven't a clue). Anyhoo, so I went to the chick for her to draw blood. Well, she stuck the right arm and...at some point, I said to her,"would we  actually see the blood in that tubing (i was hoping it was a new type of opaque tubing so we couldn't see thru it and my blood was actually flowing)?" The answer was yes. 3 drops of blood came out. Did I mention she had to draw SIX VIALS?!?! Sheesh! She went into the left arm and blood in ah bungahlation - go figure. 

Anyhoo so the next step is to wait for those results and then (of course) there is a waiting period (doc couldn't tell me how long cuz he is not a MS doctor) between the 2 drugs. I'm going to do as much as I can so that once the waiting period is up, I can get started on Gilly!

happy birthday to me!

Oh Geez

So. Yesterday, I got the call re:my titer levels.  They're too high and I can't go back on tysabri…SIGH.

My doctor will like me to get started on gilenya as soon as possible. In fact, I was instructed to stop the Tecfidera one time. So I go in on Friday afternoon to get checked out for gilenya - essentially, they have to make sure I'm healthy (other than kiss meh ass MS). They need to do:

• An EKG
• Ah eye test (cuz one of the potential side effects is macular edema)
• Blood work

After those results come back and I'm given the okay, the first dose of gilenya will be scheduled. This drug slows down the heart rate the first time it's taken so they monitor patients for 6 hours that first time - "I can't fcuking wait"...Ur heart rate goes back up (usually) by the end of that time period and will eventually go back to normal in 30 days. 

Gilenya is a once a day pill and Dr. Gilbert actually prefers it to Tecfidera (he says it's a stronger drug) so we'll see. Stacey prefers and wants Tysabri but I guess we can't always have what we want.

i hate fucking MS

Touching Moments

Learls got tattooed :-)

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