Wednesday, July 10

One Month Later

so it's been a month since i've been on Tecfidera and i haven't had any issues.  no flushing, no stomach problems, nothing - GREAT NEWS!!!  its always unnerving to start something new because u never know how u might react to it.  Beverly (at the MSCA) mentioned that it takes a number of weeks to actually get into ur system and start working, so who knows what benefits i may eventually see.  i go back there in August, so more to come on that for sure.

i talked about my telephone woes in my last post (the only issue i actually had) and everything worked out so i got the new pack yesterday.  as it turns out, i had missed a dose (of course) last month, so i had an extra pill that i took Monday morning so i only missed 1 dose (monday nite).

after my rough month last month, i'd said that i was back to normal.  i thought i was just based on how i was moving about a few times...the truth is, i'm not.  Doing things that i'm used to doing (out and about) are not as easy for me anymore.  i am still hopeful that there might be an explanation other than "the MS is progressing (ugh)" - maybe i'll write about that later.

for now, i'm hanging in there...

Friday, July 5

Really?!?! Steups

once again, i'm just shaking my head right now...

so who thought that it was a good idea to preauthorize me for ONLY the starter pack of Tefidera (the 1st pack of medication includes 7 "beginner" pills that are actually half the normal dose to introduce it into ur system and then u increase to the regular dose after that)?  some asshole somewhere amongst my doctor's office, the insurance company and the drug manufacturer.  Now, if that's how things are supposed to work then that is just downright STUPID!

apparently the insurance company will not pay for the drug unless preauthorization is given.  okay, no problem i can live with that.  what i cannot understand for the life of me is, "why give preauthorization one month ago for the starter pack of the drug and nothing else?"  was i going to take the starter pack alone and come off the drug??? why not authorize the starter pack and (oh by the way), lets authorize the maintenance (subsequent months of the drug) one time because...well that just makes sense!  of course i didn't find out about this issue until last week thursday or so but the person i spoke with said, "looks like u will still be able to get ur shipment on the 5th"....okay so i thought all was well, until i got an automated message to "call the pharmacy because there's a problem." on Monday of this week.   long story short, today is Friday and it appears that when i run out of medication on Sunday, i'll be up a creek without a paddle for a few days.

i wish i can be brave like all those out there who are managing this disease without the drugs!  i'll have extra money in my pocket and not have to deal with foolishness like this.

Tuesday, July 2

People's Reactions

it's always interesting to me to see people's reactions to their learning that i have MS.  sooooooo many people ask me what's wrong regardless of where i am when they see me walking with the cane.  i've mentioned before that the usual question is "what happened to your foot?" and my standard answer is, "nothing happened to my foot, i have Multiple Sclerosis"  i've stopped saying MS because i don't know just how many people know what MS is.

  • right off the bat however, i can tell whether or not the person even knows what " Multiple Sclerosis" is - they just kinda nod their heads and keep it moving.  no reaction (not that i need one), no additional comments, nothing.  it almost looks like they were embarrassed that they asked.  
  • then there are those who say things like, "oh i'm so sorry to hear that" and we may engage in some small talk about "life throwing u curveballs and u jes hadda deal"
  • lol...there was this old man 1 time, after i told him what was wrong, he said something that to this day i have no idea what it was.  i'm not convinced that even  he knew because he kind had the "deer in the headlights" look as he was saying it...but then he said, "well at least you're out and about here doing your thing" and i smiled and said, "i sure am".
now and again i might wonder if i'm giving them too much information by telling the truth, but the way i figure is that you should be prepared for anything if yuh fas enuf to ask the question.  if u can't handle the truth, you shouldn't ask any questions.  and then there was this guy...

Me: i have multiple sclerosis
Him: is that the one that progresses and there isn't any cure?
Me: yup.  it sure is
Him: and it lives in ur spine?
Me: well it affects the Central Nervous System so it could attack ur spine so it could affect your mobility 
Him: so what happened?
Me: i gave him a shortened version of my eyebrow twitching etc
Him: oh...and when did it happen?

i was actually in a nail salon and he was working so i never got a chance to respond because someone else had entered and he had to go do his job but, i was cracking up inside because i had NEVER encountered anything like this.  i had no problem sharing, i'll talk about it to anyone who wants to listen but it was just so funny to me how he kept going on and on and on...i think we'd still be talking if that chick didn't enter.  lol