Really????

Being sick is a helluva ting…My MRIs are scheduled for Sat afternoon.  I’m assuming that the entire process should take about 3 hours – UGH!!!  i can think of lots of better ways to spend 3 hours..at any rate…

The hospital called me to pre-register, so i’m talking to the chick and she’s going down her list of questions.  Here is an snip of the conversation:

Chick: What’s ur last name
Me: Samuel-O’Brien (1 thing people up here just DON’T get is the concept of a hyphenated last name…it’s something that i will NEVER understand and it pisses me off to no end, but it’s something i have to deal with EVERY *^%* time i’m asked my name AND of course, everyone thinks i’m married)
Chick: O’Brien?
Me: No…Samuel-O’Brien; it’s hyphenated.  (If i’m in a good mood, i will say that it’s hyphenated the 1st time i’m asked and by this time (EVERY TIME), i have attitude)
Chick: Is that an adoptive name, a legal name what?
Me: It’s MY NAME!!!

WTF?!?!?  Was she really serious?  Was she kidding me???  I think that by the time i answered that question, she realized that I was pissed off and said that it was just an additional question that came up after she put in my name…I’m sorry, i really didn’t care at that point, i was just insulted that she had to ask that question afterward.  What kinda stupid ass question is that?????

Anyhoo, at the end of the call she told me that someone else SHOULD call me to tell me IF the insurance covers the procedures and how much my deductible and co-pays are.  I called them back this morning to find out if that has been done yet and the chick said, “they’ll call u and let u know.”  I am yet to get a phone call.

I have no idea what my out of pocket expense is going to be…I’m taking bets on how much it will be and if i’ll know PRIOR to Saturday when I’m at the registration desk.

Friggin MS *sigh*

I am staying up now…LOL!!!  it was too funny last week tho…fallin asleep and/or snoring is NOT cool on a  conference call – esp if u might be called upon and have to give ur thoughts.

anyhoo, so i’ve found another helpful website…

it’s really a website that, as its name suggest, you can go and find other “patients like u” and read their stories and bounce around ideas and such.  that’s where i found most of my information on the alternate drug, 4-AP that my doctor was tellin me about.    It’s somewhat confusing to me because it appears that it’s the the base drug of Ampyra and has been around for some time now…in its (raw?) form tho, it hasn’t been approved by the FDA.

Nothing is ever simple…esp. when dealing with MS.

I was talking to a co-worker earlier and she told me about someone she knew who also has it, but before she was finally diagnosed, her doctors thought that she kept suffering from food poisoning!  WTF???  food poisoning???  Does the disease really present itself in that way too????  We didn’t spend a whole lot of time on that, so i’m not sure what else the chick may have been going thru, but geez louise!  no wonder there’s no cure!!!  Everyone’s TOTALLY confused!!!!

Muscle Relaxants

i already mentioned that my neuro prescribed the muscle relaxants for my Spasticity.  Well one of the side effects is drowsiness.  I work from home and so EVERYTHING is done virtually; meetings, presentations – everything.

Well, today i was on a conference call – an hour long one (i honestly believe that as a company we spend waaaaay too much time on calls, but that is jes me; as usual, i digress).  I was sleepy beyond belief!  It took so much out of me NOT to fall asleep.  I didn’t really focus on the blasted call because i was so focused on NOT fallin asleep.  At 1 point, i think i almost snored….it might have been just as i caught myself from falling off meh damn chair!!!!

I have another call tomorrow from 3-4:30…wish me luck!!!  I really really hope that this is not what i have to endure for the next 6 months or so; i may have to look into other options.

Well…

My doctor’s visit didn’t really go according to MY plan.  It’s not bad news, but i havent gotten a prescription for the new drug.  UGH!!!

I have to be approved by the insurance company BEFORE i can get the drug.  I have started the process…the forms have been signed, but it will be a few weeks before I am approved (by every Tom, Dick & Harry); who knows when i’ll actually HAVE the drug in hand….again, oh well, not much i can do about this.  At least the process has started.  He also told me about an alternative to the Ampyra (in the event that i am NOT approved or the cost is astronomical) that will be cheaper and i won’t actually have to go thru any kinda approval process.  Maybe more to come on that…

I have to admit, i never went to see him regarding my walking issues.  I didn’t think that it was a sypmtom per se, just the disease progressing along it’s awful course.  Well he got to see me first hand yesterday and is concerned that i may be relapsing!  Oh Lord…really?  As a result, he has sent me for a brain/spine and thoracic MRI; a brain MRI is long and torturous enuf, I wonder what all of them put together must be like.  Not looking forward to it really…but again, what can i really do?  The other thing he informed me is that i am suffering from Spasticity.  I’ve heard of/read up on Spasticity before, but i thought that it manifested itself as jerky movements accompanied by pain…didn’t realize that the stiffness/weakness that i suffer from is also part of it.  To help with that, he has given me some muscle relaxants.  He also mentioned my going on steroids to help with it, but i told him that i’d rather NOT do that, so will try the drugs (i have no problem taking drugs) combined with PT and hopefully, things will get better. 

  • Where the hell did I pick up this disease? 
  • How am i the “lucky one” to “pick up” this disease?
  • Why me?

Soooo many questions that i have no answers to…it is what it is, i guess.  I didn’t ask for it and can’t return it so i just have to deal with it!

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