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!

My MS is Temperamental!

If it’s one thing i absolutely HATE about having this fleckin disease is not knowing what is going to happen from day to day.  It acts up when and IF it feels like, regardless of what i think/want.  I went to FL this past weekend…got in around 2 Friday morning and left Monday nite.  I totally maximized my time there…hold on, i HAVE to tell this story…

For those of you who have been thru Hartsfield Internation Airport in Atlanta, it’s HUGE! 

5 concourses with a train between each to take you where u need to go…anyhoo, so i check in and get my chair and i’m on my way to gate A1. Looooooooooooonnnnnnng story short, the fligh was delayed and because of mechanical problems, the original aircraft couln’t be used…they had to find another plane for us.  No biggie, cept that it’s sitting at gate B24!!!  F**KIN-A!  by this time, the wheelchair attendant is long gone…so i have to go ask the gate agent to call someone else to take me over there…i am very polite and soft spoken (again others might disagree, but i am), so i go over and POLITELY ask that agent to call for assistance.  Her response, “WHAT??  U CAN’T WALK???”  I really had a few choice words for her, but i bit my tongue and said. “Stacey. be nice…she has to help u…WTF???  was she serious???  would i ask for a chair if i didn’t need it???  anyhoo…as usual, i digress.  I FINALLY get to FL and find out that i actually scored a 2fer deal.  Not only do i get the heat/sun in FL, but Machel Montano (one of the biggest soca artists from Trinidad) will be there the same weeked to perform!  WOOOOHOOOO!!!!  Can’t beat that with a bat! 

Anytime i travel, i’m a wee-bit concerned about what could happen…well i am happy to report that this trip, i really had no problems…i was actually able to stand on my chair for his performance and walk out afterward with no major issues.  I was thrilled…in fact for the entire weekend in FL, i really didn’t have much issue – can’t really complain at all.  yet, as soon as i get back to Atlanta (40 degrees), i STRUGGLE to walk from the airport doorway to the car.  UGH!!!
I am beginning to think that the disease has morphed itself into an “island” disease and it too, hates and acts up more in the cold temperatures.

MS Walk Challenge – Carolinas

so…
G2 is walking in Charlotte this year in the MS Challenge Walk.  It’s a 3 day, 50 mile walk taking place in NC on June 4-6.  Let’s raleigh around her and Move It together!!!  BIG LIME IN NC that weekend!!!  Here’s the link to her website:
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