The Walk (in pictures)

We happened upon this straggler at the start :-)

Coke's newest model

LOVE!!

I don't have one of mine…but I know you can figure it out

Sprayed my hair again

The kiddies

Seasoned walkers

Bank of America representin

Orange mohawk

This year i had a partner in crime

Alex gave me a flower

Jammin dong d road

We made it!

d Limerz Crew

He was jealous of my scooter so he had to get one too!  his was a Mac Daddy scooter tho…we raced - i lost :-)

EVERYBODY wants a scooter!

The Walk

came off without a hitch.  we couldn't ask for a better day (weather wise) and all who came out had a good time.

 have to use the notsocool basket on this day because i always have stuff to carry!

Walk MS 2014 selfie

More pictures to come…

Saturday April 26th

The Walk MS Atlanta is this weekend. If you're in the Atlanta area, it's in Piedmont Park - check it out. d Limerz Crew will be there in all our glory...only thing left to do is to figure out where we limin after cuz we just cyah go home after it done :-)

HAPPY HAPPY EASTER

happy Easter to one and all!

…every Easter, i crave hot cross buns (Easter tradition at home) and every Easter I get ZILCH.  this morning i decided i going home for Easter next year - i sure to get some there!

Bad Day

Last week Friday wasn't a good day for me. I was in a funk for most of the day - "feeling sorry for myself".  I think it's okay for me to have those days (i'm only human) - luckily they're few and far between so I guess that makes it better - I s'pose. Was supposed to go out that night...sure didn't.  I wish that I can do things on a whim without thinking bout whether or not the place/situation is "Stacey friendly". If needed, I always do my "due diligence" to find out but it gets old sometimes and those times I just say, "FiretrUCK it, I cyah bother go/do".

Weird Freaky Sh**

2 Friday mornings ago,  I woke up (at whatever ungodly hour) to pee and realized (I can always tell when I getting out the bed if it'll end in drama) that "uh oh. This may not end well"...and it didn't. I slid off the bed instead of getting up and off.  Sometimes when that happens, I can't get up right away (it takes a number of tries and deep breaths) but luckily this time I made it in one try, and finally got to the porcelain goddess but all along I just wasn't feeling right.

anyhoo...I organised my business and walked back to the bed and...oh shizznit, I couldn't get back in - won't bore u with the details, but I eventually got back in and went back to sleep.  Woke up to "go" to work and SAME FRIGGIN THING happened. At this, point, I start to worry because nothing is working how it should, including my hand that jes refused to open - I couldn't even finish washing my face because I couldn't cup the water in the hand. Geez, what fresh hell was this now???  

Well, I finally finished getting dressed, started working and things kinda started getting normal. My PT came over (I had an opportunity to get in home physical therapy so I took it), we went thru his lil routine and I was definitely back to normal by the time he left…hmmm...I started thinking…I remembered my dream.

Truth be told, I don't remember when, in the sequence of things, I had it but I dreamt that there was a strange man in the apartment and when I realized, I tried to turn over (I was actually lying in bed at the time) to grab a nearby stun gun and couldn't because I was panicking (whenever I start to panic my body shuts down and try as I might, I can't get things to work).  I kept trying to turn over  and...nothing. Eventually, I heard a voice I knew.  Now, I don't know if the man was someone I knew after all or what (u know how dreams are), but that's when I woke up. At that point I remember saying to myself,"whew was just a dream". I don't know if I actually moved when i woke up, but I know that I was alert and knew that everything was alright because it was just a dream.  

I really think that that is what had me so "in a mess" when I woke up.  Does it make sense? Nope, not to me but it's the only explanation I have. Now, I hadda be careful what I dream too? Steups!!! Come nah man MS, u cyah b serious!

But seriously, is that freaky or what?!?

So Guess What Happened

It's been awhile. In fact, the last time I remember bussin my azz was in December when one of the boots I was wearing held on to the carpet (yet another reason for me to HATE winter) altho for some reason I feel like there was another between then and now. Anyhoo, it happened last week Friday - it felt kinda weird too - kinda like I just didn't understand what was happening. 

One of the worst things that can happen if you walk with a cane is when/if the cane does not go where you expect it to go. I'm minding my own business trying to get wherever as "fast" as i can and I move the cane into position and something's in its way.  Remember, it's part of my anatomy, it's how I walk so its equivalent to a regular person's tripping on something.  Well last week I was walking on a hard wood floor (the bottom of the cane MIGHT also have been a little wet) and well, I placed it and it slid across the floor. UGH!  Of course I tried to fight gravity but it usually wins and, well, it did. It happened in front of G and K.  K said she heard it/me first, turned around and saw me go down in slow motion, yet she couldn't do anything to stop it.  G picked up the cane and looked at the bottom and found something stuck there - who knows, maybe that also contributed to it.

I banged up my elbow rhell hard, so that hurt for a while after. I also scratched it up so I currently have some scars in the area.  The next day, G and I were talking and when I showed her my elbow, she commented, "you rhell resilient yes" and she's right on some level - I've had so many bruises and scars as a result of falling; walking round looking like a lil chile with all my battle scars. 

I do marvel at the ability of the body to heal itself; the fact that everything just goes back to normal sometimes and you wouldn't even know that there once was a problem is quite amazing to me.  

Anyhoo, lemme go and nurse my elbow back to normal…hol it dong until next time!

Walk MS 2014

the MS Walk in Atlanta is on 4/26 this year…i'm organising T-Shirts for the team with Cittizen as we speak.

Walk MS - Atlanta 

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. 

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 :-)