Fears Part Deux

i was looking back at this list and things have changed (kinda) over the years...

• i am no longer afraid of falling (sort of).  i don't WANT to fall but it's such a part of my life now that i don't fear it as much as maybe "hope for the best" when it happens (which has not been a recent occurrence *knock on wood*)
• walking between cars is a non issue (for the most part) since i have my handy dandy cane (i'm up to 10 by the way...excessive?  maybe but i don't care)

the others are still on the list...fear of not being able to walk, pain, the unknown (all justifiable in my book).  in addition, i am afraid of...

sneezing when i'm not around something that i can hold on to.  those who know me know that this is can happen often.  my sinuses don't act up like they used to but i sneeze more often than a regular person (i'm sure) and if i'm walking or can't hold on when it happens, it's a precarious position for me.

walking in the wind.  "what??" u say.  1 of the earliest memories i have of myself is walking in Toronto between my aunt and my mother in my little red, shiny jacket.  it was WINDY and as they were walking forward each holding 1 of my hands, the breeze was pushing me back! well. it's the same thing now...i just know that i'm so friggin shaky now that a lil hard breeze will send me packing - cane and all - and i'm deathly afraid of that happenin.

i still stay away from the children - c'mon i only have 1 hand/arm to work with; they require (at least) 2!  speaking of children, they ALL used to be  fascinated by my canes; i guess the ones around me alot are used to me now but when i started coming around with the canes, all the kids were fascinated and wanted to play with them (i didn't mind, but some of the parents didn't find it as cute as i did) - lol.  it was something that i never understood but it always happened without fail - maybe it's because i was different from everyone else?

now that i'm re-reading this post before publishing it, maybe i am still afraid of falling because the end result of both these new situations is a possible buss ass so maybe deep down that is truly my ultimate fear!

Well Wouldn't u Know it...

wow!

cooler fete 2013 was NOT shut down..we partied and had a good time till 6am the next morning and weren't bothered at all by the morons :-)

hopefully the promoters will continue having the party in that place going forward and the fete will get back its good vibe that it's been lacking for the past few years.  i used my scooter and it was FULLY initiated - it wine dong d place (and get wine on), drank alcohol and even had a doubles or 2 - lol...all in all a rhell good time.

Nothing to report on the MS front...i go back for my 2nd steroid treatment on Friday and start Tecfidera next week.


On another note.  got a phone call today asking me when was my last infusion and shouldn't i be thinking about scheduling May's infusion right about now?  the call was from THE SAME PEOPLE WHO CALLED THE LAST TIME TO SCHEDULE THE TECFIDERA!!!!!!!!!!!!  oh my goodness - the shit is right there "in your computer" (as the people say).  i'm happy to report that i didn't get my panties in a bunch, i didn't have any attitude.  i just rolled my eyes, sighed inside and answered the lady's questions.  one of the questions she asked me was, "did you talk to your doctor about this?"...sigh.

i know allyuh feel i make this shit up but i swear to u, it's the truth.

my Conversation - smh

earlier went like this...

hello?

hi...this is Caremark specialty pharmacy calling for Stacey

hi, it's Stacey

I'm callin about your upcoming order to see if you're ready to schedule a shipment

(WOW! someone is actually calling me in my head) (out loud) oh...ok, sure...oh wait, which medication is this?

uhm...let's see here.  Ampyra

my heart sank...this is normal, just not an automated call this month

we discussed the ampyra and then i asked about Tecfidera (oh boy.  i figured i might as well schedule it now because i'll wake up tomorrow morning and it'll be June)...he had to transfer me and placed me on hold.  of course

8 minutes later...

someone else answered and original fella was GONE so i had to explain myself all over again (of course)...and i won't give u all the details but my question was,

"can i schedule my shipment now and how much is my copay?"

"looks like ur copay is $50 for this medication"

"oh...so i was supposed to have been approved for the $10 copay program"...(deciding to take in front), i continued, "i spoke to Biogen and they were supposed to have sent whatever approval to u"

"oh, let me check" she says..."oh yes, it's been downloaded to ur file, so the copay is $10."

so...i wonder.  if the shit was already downloaded to my file, why the hell did i have to ask for it before she told me that the copay was $10???  i know they doh give a damn about me and is really up to me to be diligent but geez, does it always have to be difficult, can't anything be smooth and easy???

i guess i shouldn't complain.  the shipment will arrive on 6/4 and i'm only paying $10!  let's keep things in perspective after all.

Steroids

LOL.  unbelievable...

i have NEVER seen my vein protrude/stand up at attention like it did on Friday when i went in for my 1st rounds of steroids.  it was unbelievable...Anita went as far as to call over the other nurses to "look at this! wow..come see, come see.  this has never happened in here before".  it was unreal!

anyway, so it was administered; there were no issues although the 1 thing that i forgot bout the process is that it leaves one helluva NASTY metallic taste in ur mouth.  it's almost like everything jes tastes bitter for a while after...i ate a few pieces of candy to see if that would make a difference and it did but only for as long as it was in my mouth.  for a few hrs after, i still had that bitter after taste hanging around.  say what, small price to pay.

so far, so good...nothing else to report

and the Games Have Started

yesterday morning i got a call from a pharmacy...still not sure WHAT pharmacy but the chick said that the pharmacy works with Biogen (the maker of Tecfidera) and supplies patients with the drug.  so i told her that MY pharmacy is Caremark and i usually work with them to get my medication shipped etc etc. She responded that HER pharmacy partners with Biogen to

"supply patients who have been approved to participate in the "Quick Start" programme with the drug...and you have been approved!"  

"wait!  wha???  Quick wha??"  i had no idea what she was talking about.  so i said, 

"so are you all going to talk to Caremark so that i'm not paying for 2 sets of drugs and getting multiple shipments?  i didn't sign up for this."  

"uhm...no"

that's when she told me that i won't have to pay for the drug because the patients on the quick start program are the ones whose insurance are not paying for the drug and Biogen will supply for free.

Well now i'm more confused!  i swear Caremark automated service has been calling me every friggin day to set up the drug shipment; i'm not sure just how many representatives i've told that my doctor wants to start the ting in June!!  and i've already confirmed that my copay is $50 and i was placed on the list for the special $10 copay program so i'm not sure what the ass is really going on!

so...bottom line - she is going to call me back on 5/28 by which time i should have spoken to Caremark to set up shipment, confirm payment etc so i'll be able to tell her whether or not to send me the drug.  I named this post "and the games have started" but hopefully everything will work out at the end of the month.

*SMH*...it's really all i can do

btw, today is my first steroid session.  i really am just keeping my fingers, eyes, toes, legs crossed that i have no kinda setback and things go as well as they can going forward.

Ah gone so...allyuh hol it dong and have a great weekend!

Cooler Fete This Year

dare i look forward to this?  setups!  it's indoors this year (that sucks) so they have absolutely NO reason to shut it down do they?  will the asshole, moronic cop (i have come to the realization that cops are MORONS) whose sole purpose in life is to find out where cooler fete is every year (u cyah tell me he doh exist) and make life miserable for those of us who go and have high hopes every, flippin, year find a reason?  yeah he will...probably will say that we obstructing the road because of the parking situation or something.  i'll keep u posted...

Laughter

i was standing in line on Monday to fill a prescription and the lady who was being helped either had a whole lot of questions or liked to talk because she was taking forever.  i was eating some cheese rice cakes and just as i'd put one with alot of cheese dust in my mouth, i heard someone say in my ear, "good grief!  U think she's asking about all the medications behind the counter?"  of course, like i said i had just placed a dusty rice cake in my mouth, so i didn't want to bust out laughing because it wouldna been pretty - it was the lady behind me and she was also wondering y the hell it was taking so bloody long...we laughed and i was able to not blow a cheese cloud in her face.

anyhoo, finally the lady being helped was done and it was my turn and of course, there was a problem.  long story short, the lady behind me walked up and started talking to the attendant too, so i said, "oh, so now u just going to cut in front of me???"  she responded with something witty, we laughed and started talking a little.  i was in the grocery so i was using the handy dandy motorized cart and when she said something about laughing and making reference to what was wrong with me, i said, "yes, well in my situation i have to laugh sometimes."  i shared that i had MS and then she shared that she was there for her epilepsy medication because "watching a seizure just a'int no fun.  I've never actually seen it but so i've heard.  MS...i really don't know which one's worse."  I couldn't agree more...i told her about my mother's theory that if we were allowed to put all our diseases in a barrel and pick out another, we would reach in and pick the same one we initially put in.  Diseases!  they're ALL WRETCHED!

so after i didn't get my prescription, i go to my car and as i'm walking to it, i realize "ah shit! the car next to me on my side is kinda close (there were no handicapped spots when i got there so the spot i was in didn't have the extra space i'm used to).  i knew i wouldn't be able to open my door all the way and i NEED that.  i was actually able to open my door halfway without banging it against the car (okay good, that's one step) but try as i might, i couldn't get my left foot into my car! GREAT!  luckily for me the driver was sitting in the car still, so i had to get her attention and ask her to reverse a little, just so that i could open my door all the way, get my foot in and be on my way.  of course, i had to laugh at myself...couldn't help it.

happy happy joy joy...fun times with Stacey!

MS Walk 2013 (fuh real this time)

so, like i said before everyone who came out had a great time!  it required some of us to wake up much earlier than we wanted to on a Saturday morning but it was all for a good cause.  I want to thank everybody for coming out again and also want to thank those who didn't but wanted to; i rhelly cyah ask for more supportive friends/family.  the jerseys  turned out great - thank you Citttizen!! could not have done it without your support either.

Enjoy...

yup. i sprayed my hair orange just for the occasion

(Almost all of) d Limerz Crew

Once again, he eh get no T-Shirt!

OBs and Learls weren't at the walk but they sported their tees that Saturday am !

cittizen supporting MS/me supporting cittizen

MS Walk 2013 and...ok, This post Rhelly Not bout the MS Walk

we had a great time.  my t-shirts were a hit and there were actually more people to support me than last year, some of whom already told me to put them down for next year.  Now!  if only my photo tek outta will send me the pictures ;-), i'll post some.

ok.  so, i went to Dr. Gilbert yesterday.  first thing he said to me when he entered the room was, "so...you ready to make some changes?"  "oh yeah, you know it" i responded.  we talked about the length of time that i've been on Tysabri, he asked me if i thought it has been working to which i responded, "i suppose so because my MRIs look good and i really can't think of a time recently when i had any kind of relapse.  i just wish it had helped my walking" but i guess you can't get EVERYTHING!  so since i'd learned of the rebound effect yesterday, i asked him about that and i must say i was really surprised at his response.  I expected to have a small battle about it with his blowing it off because it's not a proven phenomenon but instead he responded that he'll put me on 2 sessions of steroids 3 weeks apart to try and stave off anything because he wants the Tysabri to completely flush out of my system.  so....bottom line?

• i go back on 5/10 and 5/31 for steroids (i've done the intravenous steroids before and had good results (the pain that i was given it for went away)) so i'm hopeful (because ain't much else i can do) that these next 2 sessions will be ok and then my Tecfidera will arrive in the mail in early June

so then the nurse comes in to sign me up.  she was very excited to hear that i'd already ordered the CBC ...if fact her exact words were, "thank you for being proactive!".  in my mind, lady, u eh know the 1/2 of it; the less number of times that i have to be stuck for blood the better.  Oh and by the way, i guess since las week friday was my last infusion, my body decided to go out with a big bang because boy did i make those poor nurses work!!!  anyhoo, she went thru a few things with me...

• how to mitigate and minimize the side effect
• sign here, sign there

and get this...Biogen, the manufacturer, so wants people to use this drug that:

1. they have the copay program so that I only pay $10 and they will foot the rest with my insurance 
2. if for whatever reason my insurance company says they're not paying for it, Biogen will give me the drug FOR FREE ...WHAT!?!?!?

i hope that most people will be able to take advantage and the fine print doesn't exclude too many people (because i'm sure there is some kinda clause somewhere).  so it's official bye bye Tysabri, oh and they did a 3rd JC Virus test just to be absolutely sure and i was positive again, so i gone Tysabri, it was good while it lasted but all good things must come to an end.

Alright...ah gone so, ah rinse out allyuh eyes enuf!

Blissful Ignorance

i talked about whether it's better to be blissfully ignorant in my last post.  i am convinced that that's the way to be - too much knowledge is a helluva ting; i've always felt this way.

i was reading another blog this morning and ran across something called the "tysabri rebound effect" - never heard of it before.  let me just say that apparently there is no scientific research/hard and fast facts  backing this up but still it's "out there"...

so essentially, some patients who came off tysabri reportedly experienced a HUGE relapse and shown increased lesions on their MRIs about 3-6 months after.  great!  is that something for which i may need to brace myself??? steups!!!  doesn't make sense getting my panties in a bunch for something that i don't know for sure will happen but u catch my drift about being blissfully ignorant don't u?

Annette Funicello

The first time i'd ever heard this name was on the news on Monday(?).  Annette died from complications she suffered as a result of Multiple Sclerosis.  So, i decided to look her up and see what the complications were.  i never found out exactly, but i did find this video and after looking at it, i really don't need to know what the complications were.  Her story was heartbreaking and i wondered afterward if i should have watched it (even tho, i couldn't/didn't want to stop watching).

Every time i see things like this/hear other people's stories, i wonder...do i want to always be realistic and know everything about the disease and hear these extreme stories?  is it better to be blissfully ignorant of what COULD potentially happen?  the reality is that this is Multiple Sclerosis - at its absolute worst yes, but this is the disease!

take a look if you want; it's bout 10 mins long...

Annette's Story

Tecfidera

BG12 is now referred to as Tecfidera.  As i mentioned before, i go for my "juicing up" on Friday and even though i won't see my doctor, i'll either see A doctor or a nurse practitioner so i'm definitely going to get as much info as i can from them and if possible start the ball rolling.  a complete blood count must be done prior to starting, so i'll suggest to whomever i talk to that they might as well order it.

My findings:

• there's no waiting period after stopping the last therapy before starting it...that's good.  that way i can start it sooner rather than later because the Tysabri won't have to be out of my system
• there is a $10 copay program.  the site states that there is no income requirement, no time limit and no waiting (enrollment can happen as soon as you go on it); this is good news...hopefully alot of people can take advantage of this
• moderate level of alcohol has no effect on it or it's workings.  WOOHOO!! it's no secret that i enjoy beverages of the alcoholic kind :-)  the day that i am told that i can no longer drink is the day that this shit will become unbearable.  the question of how the drug will interact with the alcohol is MOST important - i don't care, it is what it is

it appears that the most serious side effect of it is that it could cause a decrease in the white blood cell count (nothing in life is free) and the most common effects are flushing, itching, redness, rash and nausea, vomiting, diarrhea stomach pain or indigestion - goody!  these also may decrease over time...but i'll take those over a fatal brain infection any day...I'll be adding a little blue pill to my pill box regimen :-)

so...more to come.  wish me luck on friday!

the Latest and Today's Ole Talk

so my recent "happenings"...my right thumb moves on its own.  just a small movement, like a (continuous) flicking motion (about 2 mm or so).  last week when i started noticing it, it actually happened all day long from that moment.  it's also quick movements too...it's annoying but nothing else.  actually, honestly it isn't happening as much anymore.  is it the MS?  hell if i know, but it insist on hanging around, so it's getting blamed!  it's extremely annoying when i play this game on my phone because i would position my thumb where i want a ball/thing to drop and then my thumb jerks and the thing goes where i don't want it to go - steups!

One of the reasons that i stopped writing for those couple months too is that i got tired of writing about being sick and falling!  remember i said at the beginning of 2012 that i would keep up with my falls?  well i did and it actually was 12 - i think...i'm almost sure it was 12 (ugh! great!  1 a month).  i was doing rhell good this year, for the most part, and then fell twice last weekend.  so far for this year it's been 3 but i can honestly say that i can only blame the MS for 1 - the other times, i was doing shit that i should not have, altho maybe without the MS, i woulda been able to "catch myself"?  i'm not keeping up this year (it could get depressing after a while) but it has been 3 (off to a bang up start).

i go in for infusion #38 next week; i plan for that to be my last - WOOHOO!!  i won't be able to start the ball rolling to go on BG12 (it actually has a new name now) i don't think because i won't actually see my doctor but i should be able to get all my questions answered so that i can hit the ground running when i do see him in May.  We've already spoken about it too so I expect no surprises/push back/pressha from him; he actually wants me to switch.

anyhoo, ah gone so...have a great weekend everyone!

2 Things I've Learned

so my left side, for whatever reason, is the more MS afflicted side.

• i drag my left leg, it's always the stiffer one, it's the one that i have more trouble to lift (say to get into a car amongst other things).
• My left hand is the one that likes to curl up and give me shit to open. 

nothing really going on with the right arm or leg.  

I'm not sure if i mentioned that my last trainer decided to ups and leave GA and move to NY, so at the end of the year last year i was desperately looking for a new trainer - almost reaching panic stage because:

1.  that arthritis (?) ad kept playing in my head, "a body in motion, stays in motion while a body at rest, stays at rest - they are trying to encourage people with arthritis to stay active and get on some pill - and i really want to stay in motion
2. will i be able to afford a new trainer???  i was getting a friends and family deal with Rhonnel!  

well, say what you want about Facebook, it's good for some things, i finally got a trainer who i could afford.  So i s'pose everybody does things their way and would you believe that i've discovered, working out with her, that my LEFT side is actually stronger than my RIGHT?!?!  who woulda thunk it? certainly not me!  wow!

onto the 2nd thing...who out there knows exactly how tall a chair must be for them to be able to sit on and get up from it easily?  ME, that's who!  i've discovered that if a chair is 18 inches tall, i can easily sit on it and when it's time to get up, i don't need any help whatsoever - woohoo!  Don't get me wrong, it's not that i always need help with other heights, it's just that 18 is the magic number :-)

 

ah gone so...hol it dong...

cittizen™

Trinis are very proud of where we're from and who we are as a people.

Here in Atlanta, the ones who are in constant contact with each other support one another as much as we can and it's always like that, for the most part.  as a result, this year i was thinking, "hmmm...wonder if there's a way to get my shirts for the walk from home/support a business at home this year".  the wheels started turning and i did just that; found a way to connect at home to get them straight from Trinidad.  in the middle of the planning/trying to make it work, I got an email from B (who lives at home) asking me if i'd gotten T-Shirts for the walk this year already and if i had, he had something in mind that maybe, i could think about for the future.  As it turns out, my original plan was only half going somewhere so i decided to work with B.

After some emails back and forth, the "marriage" between Stax and cittizen™ occurred.  cittizen™is "an apparel brand celebrating and commenting on all things Trinbagonian" and as you can see from their logo on their site, the focus is on "trini centric apparel".  what better company would i, a Trini living away from home, want to work with to create/produce my T-Shirts.  

You may have noticed their logo at the top of my blog; it actually links to their website.  Make a visit and check out their garb; i've already seen one that i want.  it's a picture of the red, black and white fingerprint - daiz BOSS.

Approved!

BG12 was approved...buh bye ominous threat of brain infection (that i may not even know i have), hello possible nausea, diarrhea and stomach indigestion.  lol

seriously, now on to the (possible) fun and games to get on it.

Wretched!

it's my new "latest and greatest" term to describe MS these days.  between the situations that i find myself in sometimes and the stories that i've heard, i think that "wretched" is most apt.  i was in a funk last Saturday morning...without going into details, i just had to deal with a situation that got me thinking that MS can really strip you of all your dignity sometimes.  Even when you're by yourself and get out of a situation, just the fact that you are IN the situation in the first place is enuf to send somebody over the the edge.

On the flip side, my mother (smart lady that she is) often says if everyone can put their respective diseases in a barrel, shake up the barrel and then pick whatever they want out of the barrel, 9X/10 they'll probably pick the same WRETCHED disease that they had in the first place (kinda "the devil you know" type situation)....but i wonder, will i really take back MS?  maybe it'll depend on my options...hell, do i really have to pick anything at all???

Anyway...Walk MS in Atlanta is on 4/13 this year.  Hopefully, it'll be a nice day (clearly Atlanta didn't get the memo that we in spring already because of these stupid ass temperatures) and we'll be able to go out there and walk/scoot in all our glory.

the walk thruout the years...always a good time.