Friday, November 25

High Maintenance

in my last post, i mentioned that i've become very "high maintenance"'s so true - it actually is a lil disgusting.  Everything has to be just right for me to participate.  

  • we going to Carnival somewhere; we hadda know bandleaders or DJs so that i can get a spot on d truck - I cyah be on the road
  • we going to fete somewhere, we either walking with a chair or (again) know the promoters so that a chair is organised for me in the party
  • i want to buy a shoe, i have to be mindful of the heel (i almost need a cobbler to make my shoe special, because who knows if i'll ever find what i need)
  • i have to go anywhere, i need to be mindful of parking - how long is the walk from the car to the door blah blah blah
and the list can go on...Now, don't get me wrong i am grateful that we know promoters/band leaders/djs etc, because it allows me to continue doing the things that i like and enjoy life as normal and they all know the situation, so nobody gives us a hard time.  On the flip side there are perks...i sail thru the security line at the airport, board the plane before everybody else, have prime parking but that's beside the point for this post.

the tickets to Vegas are bought!  woohoo!!!  but of course, i have to think about being in Vegas (a walking city) in my condition (i almost didn't want to go at first).  So...

  • I had to call the hotel to see if they have rooms with walk in showers - i discovered (not the hard way - thank God) that i would prefer NOT to climb into a tub to take a shower.  That never occurred to me until recently because i don't have a tub in my bathroom; i have a walk in shower.
  • the last casino i went to had scooters for rent, so i figured Vegas MUST also have them.  but then i started thinking...if i'm there for a few days, i don't want to have to rent it out daily (it'll be too costly!) - what if there is a long term kinda thing available?  and wouldn't u know it? there is - so i'll be good for my entire stay
My point is...i can't really afford do things on a whim anymore.  I really have to stop and think things thru, make sure the conditions are just right, make sure all my bases are covered so that i'll be ok before getting into anything.

it sucks!  but it is what it is...


How fitting that yesterday was Thanksgiving (here in the US) and the 2nd anniversary of this blog.  Amongst the many other things that i'm thankful for, i am extremely thankful for all of you - my readers, my supporters (virtual, across the miles and here with me) and all those who've offered me a helping hand over the years.


The Oddest Thing


i can't walk in heels but i can't walk in flats either!!  WTF?!?!?

if i try to walk in heels, i most probably will break my ass - don't know that for sure but i'm willing to bet my very last dollar that it will happen.  These days, walking in flats too (no heel whatsoever or barefoot) is 1 of the most difficult things that i have to do - I haven't fallen yet but i won't be surprised if it's in the cards.  In fact, when i walk barefoot, i tend to walk on tippytoe to compensate - it's just the oddest thing.  I haven't figured out why that is altho i think that maybe it has to do with my sometimes dragging feet?  who knows...

I'm highly upset now because the pair of boots i bought last year (when i came to terms with the fact that heels were a thing of the past) are flat - I've worn them once or twice and i cant walk in them either so i have to give them away (and they are so cool too).  Having MS has made me very high maintenance.  Everything has to be just so or just right for me to participate/handle/be part of.  When i go shopping for shoes now, they have to have the perfect heel so i can walk in them; can't be too flat, can't be too hight, can't be too narrow, can't be too wide - steups!  

just a pain in the ass if you ask me!

Monday, November 21

Nothing to Talk About

It used to be that i would panic when i didn't have anything to write about.  in those days, i used to publish every day without fail.  I'm a little different now - i don't panic, i think of it as "woohoo, things are stable" or at least i don't have anything interesting to kinda bugs me a little, because i don't want anyone to lose interest, but i really don't have anything of note going on...hmmmm.

Anyhoo, i had my 1st of the 3 month MRI rotation on Friday and i'll either give MSCA a call or wait until i go to my neurologist in 2 weeks to get the results.  One of the things that you have to do when you get an MRI is remove all steel (jewelry included).  I have a few piercings and 1 is relatively new, so i didn't want to take out the earring.  i called the piercing place to see if i could buy glass inserts and the chick told me that titanium (all their earrings are made of it) is actually safe for MRIs so no need for glass.  I went into the chamber and even though i'd been assured that everything would be okay, i had visions of all my earrings flying out my head and ripping my ears apart.  of course that did not happen! 4 or 5 MRIs in and i still sometimes have visions of my older fillings flying out too (i know, i'm a jackass).

Anyway, thanksgiving is coming up and as i mentioned in my last post, it's going to be different this year, i'll actually be going to someone's house - looking forward to it.  I hope all those who celebrate it have a GREAT time with family/friends/whomever you spend it with.  I know that i'll be having a GREAT weekend myself.

Wednesday, November 9

hmmmm...Am I Weird?

I've been told in the past that i have a stone where my heart should be.  I'm not the most emotional person u'll ever meet and I'm very practical - most times.  Anyhoo, I was reading something yesterday and it occurred to me that i didn't cry when my doctor (at the time) told me that i had MS - didn't the days after either.  I don't remember how i told everyone around me nor their reactions...did anyone cry?  hell if i know.

in fact, i didn't cry until almost a year later on GA Avenue in DC when i couldn't play mas!  i wasn't crying because i had MS per se, but because i couldn't enjoy something that i'd been doing for YEARS!  funnily enough...i tear up every time i'm anywhere near the parade for Carnival (miami, DC); hence the reason i will not be going home ever again for Carnival.

those are the only times that tears have actually flowed...yeah, i have the occasional bad day/sad time but i've never been truly upset about having MS.  I'm afraid of what might be in store for the future and a few other things, but upset? no...i can't do anything about it - NOTHING at all, so y waste time to get upset.

does that make me weird/stupid/all those kinds of words?  don't know, but it is what it is...

Tuesday, November 8

The Holidays

so it's that time of year...i used to look forward to Thanksgiving and Christmas - i loved them both (doh mind it's the WORST season of the year) until MS reared its ugly head and i can't enjoy cooking for thanksgiving or shopping for Christmas!  For some reason, both holidays are a HUGE deal in Tucker.  We always have a larger than life spread on the table for thanksgiving (u'd swear we grew up celebrating it) and a tree with millions of gifts (most of them for us) under it at Christmas.

well MS has spoiled them both for me.  I can't stand and cook the dishes i have responsibility for and shopping online is just no fun for me!  and as usual, i am jealous of all the people out there who have no problems...

this year,  i have to find someone's else's house to storm for food (no fault of the MS) and we are hopeful that Christmas will find us in Vegas (if that's not something to look forward to, I don't know what is) :-)