MS: Multiple Sclerosis, My Story...
I am a Trinidadian; I will use lots of Trini slang/words and will link to MY TT Dictionary as necessary but lime = hang out; i will use that a helluva lot!
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Monday, December 31
Friday, December 28
New Place
we've moved...i've always said that the only thing worse than moving is finding a new place to live. well for this move, i used an apartment finder AND a moving company so both processes were quite painless. of course when i submitted my requirements for the new place, i included a "walk in" shower and the fella knew right away where he would send me; as it turns out, that's exactly where i am.
i thought that i'd have to be on the first floor and i really didn't want that but as it turns out, this place has a parking deck, so the apartment is actually on the 4th floor. it's a nice place but can i just share that, i eh go lie, I'm ECSTATIC to be without stairs...leaving the house behind (we're going to rent it out) was like closing a chapter of our lives - it certainly is the end of an era - but the night that everything was moved, i walked from my office to the kitchen to the balcony to my closet jes BECAUSE I COULD :-) It was a beautiful feeling that i really cannot describe :-) :-)
i've already christened the place - ugh and it was really odd. i was actually standing, having a conversation with the cable man when all of a sudden i lost my balance and went crashing down - ayayaye!! i apologised to him after because it jes happened with no friggin warning. he also apologised to me for not doing anything because, poor fella, he didn't even realise what was happening fus it happened so fast.
in other news...i had a long MRI done on 12/18 - a cervical spine and brain - and according to my doctor (when we were talking bout my pain), "well you look good on film..." so that's good news; there's no activity/additional scarring. he also told me that he's thinking that it might be March for BG12 (i'm not holding my breath, altho i do want to get off the Tysabri).
hope u all are having a great season; i sure am. Nothing beats a Trini Christmas!!
Saturday, December 22
Falling Behind Again
so many things to write about but i just havent had time....it's been a really, really busy last few weeks.
i've had this feeling in my left (of course it's that more affected left side) arm for a long time..i'm not sure how else to describe it, but a feeling. you know how when u hit ur funny bone and u get that weird feeling? it's not pain, it's not an itch...it's just a weird feeling. well that's what i've felt...and, what i noticed was that when it got more intense, that's really when my left hand would act up; it starts to clench up and not for hell could i open it unless i pry it open - great! well, i've been living with that for a while - told my doctor of course, but as usual i just chalked it up to one of those things and there were times that i didn't even notice it (actually, i'd spoken to another MS patient once and she said that she has the same kinda thing - it's such a good feeling to know that it's not just u). anyhoo, about 3 weeks into November the feeling became PAIN!!
oh great! the pain felt like...u know when a muscle is about to cramp up and u jes know that if you stretch it in another direction or something, it won't turn into a full fledged cramp? well yes thats how the pain felt; problem was that i wasn't sure exactly how to position my arm for me to get some relief. it would happen, but it wasn't something specific that i was doing - i would just get lucky. the pain was most intense at night but once i got into bed, it would ease up...well, i didn't do anything about it and went to the MSCA on 12/18 for my infusion. when i told Beverly the nurse practitioner, about it, she decided to administer (intravenously) some steroids. i was skeptical (because of course, it's steroids) but she made me feel okay about it and i must say that the pain just disappeared. I saw my doctor later that day and he actually prescribed some more (oral) steroids for me to use if i wanted (i left for home 2 days after so couldn't go back for the 2 additional doses of IV steroids that they would normally give) but i actually didn't fill it because i've heard horror stories bout the oral drug. MS! gotta love it right? wrong! but i do have to live with it.
anyway, so i'm home. i'll probably try to post once or twice again but please don't hold me to it; i'm not making any promises. allyuh hol it dong until i return or post again (maybe)
oh, just in case i don't...
i've had this feeling in my left (of course it's that more affected left side) arm for a long time..i'm not sure how else to describe it, but a feeling. you know how when u hit ur funny bone and u get that weird feeling? it's not pain, it's not an itch...it's just a weird feeling. well that's what i've felt...and, what i noticed was that when it got more intense, that's really when my left hand would act up; it starts to clench up and not for hell could i open it unless i pry it open - great! well, i've been living with that for a while - told my doctor of course, but as usual i just chalked it up to one of those things and there were times that i didn't even notice it (actually, i'd spoken to another MS patient once and she said that she has the same kinda thing - it's such a good feeling to know that it's not just u). anyhoo, about 3 weeks into November the feeling became PAIN!!
oh great! the pain felt like...u know when a muscle is about to cramp up and u jes know that if you stretch it in another direction or something, it won't turn into a full fledged cramp? well yes thats how the pain felt; problem was that i wasn't sure exactly how to position my arm for me to get some relief. it would happen, but it wasn't something specific that i was doing - i would just get lucky. the pain was most intense at night but once i got into bed, it would ease up...well, i didn't do anything about it and went to the MSCA on 12/18 for my infusion. when i told Beverly the nurse practitioner, about it, she decided to administer (intravenously) some steroids. i was skeptical (because of course, it's steroids) but she made me feel okay about it and i must say that the pain just disappeared. I saw my doctor later that day and he actually prescribed some more (oral) steroids for me to use if i wanted (i left for home 2 days after so couldn't go back for the 2 additional doses of IV steroids that they would normally give) but i actually didn't fill it because i've heard horror stories bout the oral drug. MS! gotta love it right? wrong! but i do have to live with it.
anyway, so i'm home. i'll probably try to post once or twice again but please don't hold me to it; i'm not making any promises. allyuh hol it dong until i return or post again (maybe)
oh, just in case i don't...
i hope Santa brings u all everything that u asked him for :-)
Monday, December 10
Masque 'n Mas
Before i continue, let me publicly thank Krista for her 2nd to none introduction of me that nite...i was appalled when it occurred to me later that week that i didn't thank you on stage (gasp)!!
ok...so as i said before, the nite was a very good nite...we had good fun.
My mask was handmade by Sdee and i asked her to use orange to represent the MS and all the feathers are on the right side - my stronger side - to balance out the weak side most impacted by the MS. I've posted a few pictures below but see the full write up and all pictures here on Trini Jungle Juice.
ok...so as i said before, the nite was a very good nite...we had good fun.
My mask was handmade by Sdee and i asked her to use orange to represent the MS and all the feathers are on the right side - my stronger side - to balance out the weak side most impacted by the MS. I've posted a few pictures below but see the full write up and all pictures here on Trini Jungle Juice.
A collage of me that was placed by the door
My table centerpiece
MSCA representing!
lol! Nige had a GREAT time :-)
We nicknamed him "the cat man"
I really thought that Rhoms won the "most unique mask" contest
1st generation
2nd generation
U cyah really make it out, but G is in this picture
G wasn't there in person
Me and Sdee
OBs, me and the photographer of the nite
Thursday, December 6
November Continued
so...i got another cane. G2 bought me a "glow in the dark" cane. the handle and the grip are blue in normal light but then they glow a neon green in the dark - rather cool. it also quickly became my 2nd favorite because the handle is padded and so i used it a lot - until i busted meh ass on it the other day and it bent - great! i walked out my door and lost my balance but luckily i fell into a shrub that's right outside the door so no harm done - cept to the cane. Steups!!!
I am now the proud owner of a spanking brand new red scooter (thanks again Learls!). No more renting when i need one and i can use it whenever/wherever i want. we went to the mall last week Sunday so out came the scooter. Now, i'm not a shopaholic - i spend all my money in one store - Express. if it's not in Express, chances are it won't get bought and i've learned to really enjoy shopping on express.com but it was Learl's last weekend and we had some things to get so off we went to the mall. well, in the Express store...
Before
After
I am now the proud owner of a spanking brand new red scooter (thanks again Learls!). No more renting when i need one and i can use it whenever/wherever i want. we went to the mall last week Sunday so out came the scooter. Now, i'm not a shopaholic - i spend all my money in one store - Express. if it's not in Express, chances are it won't get bought and i've learned to really enjoy shopping on express.com but it was Learl's last weekend and we had some things to get so off we went to the mall. well, in the Express store...
- i brought down a rack of shirts,
- pushed 2 people and a display to areas that they weren't supposed to be,
- missed bursting a chain and bringing down the jewelry display by a hair (luckily Learls happened to be there and saw what was about to happen)
all the while of course i was laughing and apologizing profusely! crazy...driving the scooter on the open road and in a store are 2 completely different things!
alright..well as u were. this is it for now.
hol' it dong,
Tuesday, December 4
I'm Back
wow!! it's been a long long time...
November was one helluva hectic month. OB arrived first, 2 weeks later Learls and her 3 sisters came in (can we say full house?), the masquerade ball happened, thanksgiving and then 1 by 1 the visitors started leaving - with OB and Learlyn leaving bright and early yesterday am. i had no time off and worked right thru and just had no time to write...thru all of this the MS behaved itself - thank God!
i'm in search of a personal trainer - ugh! my last trainer got a job in NY and moved back - i was not a happy camper but what could i do? of course, chances are that i won't be able to find a trainer who will charge the same rate that i'd been paying so woe is me. I really need a trainer, as we all know, so i'm on the hunt.
The masquerade ball came off without a hitch - was a very nice event and well attended too. My mask was hand made and i asked Sdee to use orange to incorporate the MS colour. i made my speech and actually felt good throughout the whole thing so i didn't rush (i tend to do that sometimes), i came off very confident and apparently alot of people liked it. All in all was a good nite - some people got tite so that's a sure sign of a good nite :-)
I can't post more pictures, because i haven't been sent any yet and i only had these 2 on my phone.
anyhoo, this is it for now...be back tomorrow for a few more updates from last month.
November was one helluva hectic month. OB arrived first, 2 weeks later Learls and her 3 sisters came in (can we say full house?), the masquerade ball happened, thanksgiving and then 1 by 1 the visitors started leaving - with OB and Learlyn leaving bright and early yesterday am. i had no time off and worked right thru and just had no time to write...thru all of this the MS behaved itself - thank God!
GREAT, GREAT, HAPPY, TIMES!!
i'm in search of a personal trainer - ugh! my last trainer got a job in NY and moved back - i was not a happy camper but what could i do? of course, chances are that i won't be able to find a trainer who will charge the same rate that i'd been paying so woe is me. I really need a trainer, as we all know, so i'm on the hunt.
The masquerade ball came off without a hitch - was a very nice event and well attended too. My mask was hand made and i asked Sdee to use orange to incorporate the MS colour. i made my speech and actually felt good throughout the whole thing so i didn't rush (i tend to do that sometimes), i came off very confident and apparently alot of people liked it. All in all was a good nite - some people got tite so that's a sure sign of a good nite :-)
I can't post more pictures, because i haven't been sent any yet and i only had these 2 on my phone.
anyhoo, this is it for now...be back tomorrow for a few more updates from last month.