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:

St. Patrick’s Day

okay…a bit late, but better late than never right?

WOOHOO!!!

I was patiently waiting for this day…i was able to eat meat

5 of us went to out most favorite(ist) place and got down…my orders?

  • PORK Belly
  • LAMB Chops
  • PORK Shoulder
It’s a tappas bar, so the dishes are a 1 serving type deal, but boy did i get my meat on!  Hope everyone wore green and was able to drink their GREEN BEER!!!

So Far So Good

Everything I’ve found out about the new medication so far is good news…

  1. IT IS now AVAILABLE!!!
  2. The manufacturers have negotiated a price of $40/month for privately insured patients (hoping that i fall in this category; can’t imagine that i don’t)
  3. The specialty pharmacy I use for my other medication has it and will be able to mail it to me (also hoping that this would be the case so i wouldn’t have to search out a new pharmacy)
Next Step:
  • Go to my doctor and getting the prescription!
Everything couldn’t be looking so good and then i go to him on 3/23 and he doesn’t want to prescribe it for me could it?  I am the biggest pessimist that u’ll ever meet, but i am being very positive right now.   I cannot believe that he won’t want to prescribe it for me – that is just NOT an option.
Anyhoo, so mark ur calendars!  ðŸ™‚  3/23 @ 2:30, one week from today, i go to him.  You will get the news on 3/24 🙂

I couldn’t think of an suitable picture, so enjoy a picture of me, since this post is somewhat personal

🙂

MS Awareness Week is Over

this is the first time since being diagnosed that i was even aware of an “MS Awareness Week” and i’m glad that i was able to participate this year.  The “party” at the MS Society of GA was nice…good times, with good people.  Thanks to all of you (u know who u are) for your support – either wearing orange for the week or coming to the party…

Enjoy a few pictures…

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