Author: Stax

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!

so, like i said before everyone who came out had a great time!  it required some of us to wake up much earlier than we wanted to on a Saturday morning but it was all for a good cause.  I want to thank everybody for coming out again and also want to thank those who didn’t but wanted to; i rhelly cyah ask for more supportive friends/family.  the jerseys  turned out great – thank you Citttizen!! could not have done it without your support either.

Enjoy…

yup. i sprayed my hair orange just for the occasion

(Almost all of) d Limerz Crew

Once again, he eh get no T-Shirt!

OBs and Learls weren’t at the walk but they sported their tees that Saturday am !

cittizen supporting MS/me supporting cittizen

we had a great time.  my t-shirts were a hit and there were actually more people to support me than last year, some of whom already told me to put them down for next year.  Now!  if only my photo tek outta will send me the pictures ;-), i’ll post some.

ok.  so, i went to Dr. Gilbert yesterday.  first thing he said to me when he entered the room was, “so…you ready to make some changes?”  “oh yeah, you know it” i responded.  we talked about the length of time that i’ve been on Tysabri, he asked me if i thought it has been working to which i responded, “i suppose so because my MRIs look good and i really can’t think of a time recently when i had any kind of relapse.  i just wish it had helped my walking” but i guess you can’t get EVERYTHING!  so since i’d learned of the rebound effect yesterday, i asked him about that and i must say i was really surprised at his response.  I expected to have a small battle about it with his blowing it off because it’s not a proven phenomenon but instead he responded that he’ll put me on 2 sessions of steroids 3 weeks apart to try and stave off anything because he wants the Tysabri to completely flush out of my system.  so….bottom line?

• i go back on 5/10 and 5/31 for steroids (i’ve done the intravenous steroids before and had good results (the pain that i was given it for went away)) so i’m hopeful (because ain’t much else i can do) that these next 2 sessions will be ok and then my Tecfidera will arrive in the mail in early June

so then the nurse comes in to sign me up.  she was very excited to hear that i’d already ordered the CBC …if fact her exact words were, “thank you for being proactive!”.  in my mind, lady, u eh know the 1/2 of it; the less number of times that i have to be stuck for blood the better.  Oh and by the way, i guess since las week friday was my last infusion, my body decided to go out with a big bang because boy did i make those poor nurses work!!!  anyhoo, she went thru a few things with me…

• how to mitigate and minimize the side effect
• sign here, sign there

i talked about whether it’s better to be blissfully ignorant in my last post.  i am convinced that that’s the way to be – too much knowledge is a helluva ting; i’ve always felt this way.

i was reading another blog this morning and ran across something called the “tysabri rebound effect” – never heard of it before.  let me just say that apparently there is no scientific research/hard and fast facts  backing this up but still it’s “out there”…

so essentially, some patients who came off tysabri reportedly experienced a HUGE relapse and shown increased lesions on their MRIs about 3-6 months after.  great!  is that something for which i may need to brace myself??? steups!!!  doesn’t make sense getting my panties in a bunch for something that i don’t know for sure will happen but u catch my drift about being blissfully ignorant don’t u?

The first time i’d ever heard this name was on the news on Monday(?).  Annette died from complications she suffered as a result of Multiple Sclerosis.  So, i decided to look her up and see what the complications were.  i never found out exactly, but i did find this video and after looking at it, i really don’t need to know what the complications were.  Her story was heartbreaking and i wondered afterward if i should have watched it (even tho, i couldn’t/didn’t want to stop watching).

Every time i see things like this/hear other people’s stories, i wonder…do i want to always be realistic and know everything about the disease and hear these extreme stories?  is it better to be blissfully ignorant of what COULD potentially happen?  the reality is that this is Multiple Sclerosis – at its absolute worst yes, but this is the disease!

take a look if you want; it’s bout 10 mins long…