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!