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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Thursday, August 30
Wednesday, August 29
Encounters at the Gym
i really like my gym...it's small, small enuf for me to "walk" around (read "hold on to my trainer" - lol) and do what i need to do. I mentioned one time before that this woman walked up to me and told me that i am her inspiration. She tells herself, "if she can do it, so can i!"...and i swear she's there everytime i'm there, sometimes i meet her there and leave her there too! i never ever thought i'd ever get to the point that i'm at where i actually look forward - nah, i don't look forward to it - enjoy working out. lol
anyhoo, so i'm also learning that she's not alone. couple weeks ago i was leaving and as i was walking out, a woman who'd just pulled up said something along the lines of, "aw geez! u're leaving??? i missed u, i missed my motivation" :-) it's nice to hear those kinds of things from complete strangers.
Last nite, i was walking out and, in the gym is one place that i ALWAYS move aside to let people pass. so this man was behind me and i moved aside for him to pass but he refused, told me to take my time and keep going. well as we got to the door, he started tellin me about this man who "heals everything" blah, blah, blah...when i asked him the man's name, he said, "i don't remember" - ok guy!! anyhoo, we continued talking and don't u know it, his brother has MS too (what are the odds)! He talked about the fact that he admires what i'm doing (out there in the gym staying active) because his brother is the complete opposite and stays at home and does nothing (there are differences; his brother is in a chair and is in pain some days). he said that he really tries to get his brother to go out and do stuff but nothing works.
i've said this before and i'll continue to say it, "MS is a wretched disease", noone can be blamed for how they deal with having it (or any other disease for that matter). Yes, maybe having a positive attitude is a good thing, but that isn't easy - nor is it easy to maintain ALL the time. Now, i didn't get into any other details about his brother, but there's just no telling what he might be going thru at any given time that might make him feel that the best road for him to take is to stay at home and do nothing - it's his choice.
anyhoo, so i'm also learning that she's not alone. couple weeks ago i was leaving and as i was walking out, a woman who'd just pulled up said something along the lines of, "aw geez! u're leaving??? i missed u, i missed my motivation" :-) it's nice to hear those kinds of things from complete strangers.
Last nite, i was walking out and, in the gym is one place that i ALWAYS move aside to let people pass. so this man was behind me and i moved aside for him to pass but he refused, told me to take my time and keep going. well as we got to the door, he started tellin me about this man who "heals everything" blah, blah, blah...when i asked him the man's name, he said, "i don't remember" - ok guy!! anyhoo, we continued talking and don't u know it, his brother has MS too (what are the odds)! He talked about the fact that he admires what i'm doing (out there in the gym staying active) because his brother is the complete opposite and stays at home and does nothing (there are differences; his brother is in a chair and is in pain some days). he said that he really tries to get his brother to go out and do stuff but nothing works.
i've said this before and i'll continue to say it, "MS is a wretched disease", noone can be blamed for how they deal with having it (or any other disease for that matter). Yes, maybe having a positive attitude is a good thing, but that isn't easy - nor is it easy to maintain ALL the time. Now, i didn't get into any other details about his brother, but there's just no telling what he might be going thru at any given time that might make him feel that the best road for him to take is to stay at home and do nothing - it's his choice.
Friday, August 24
Fruit
One thing i really really miss about being away from home is the abundance of fruit that we have at our disposal. everybody have at least 1 fruit tree in their yard - we had a plum and cherry (and not the variety u can find here either - ours better!). i took advantage but i wish i had a real appreciation for fruit back then like i have now - i could actually live on fruit easy easy.
Anyhoo, one of said fruit is a soursop. boy do i love me some soursop - especially the ice-cream! i went to check 1 of my "mothers" the other day and the conversation turned to "tea brewed from the soursop tree leaves". Apparently the word on the streets (these days or maybe i just found out) is that this tea is better for cancer patients than chemo; some go as far as to say that it cures cancer. hmmmmm, if it cures cancer, what might it possibly do for MS??? i did some digging around and it's supposedly an immune strengthener and has quite a few medicinal benefits, so yes, i've started drinking soursop leaf tea :-) I figure it cyah hurt, what do i have to lose? the kicker tho is that it makes u sleepy!!! UGH!! so i hadda watch when i drink it so that i don't fall asleep on any of the numerous calls i have throughout the day - lol
too bad the leaves don't have just a hint of the fruit taste...
Ah gone so!
true story
a few of us went to Outback Steakhouse once. we got there around 8:30ish and we eatin, we limn. well by 12:30 when the manager started hovering around the table, we realized that maybe it was time to leave the people establishment. we were the only ones left in the place, all the chairs were overturned on the tables (they closed at 11:00 after all). the guy was flabbergasted to hear that "no, we weren't having a reunion or hadnt seen each other in years" (in fact we lime every weekend for the most part) but u know what we'd been sitting there talking about for the previous hour, hour and a half? the friggin fruit at home!! so many varieties, some i hadn't even ever heard of.
Anyhoo, one of said fruit is a soursop. boy do i love me some soursop - especially the ice-cream! i went to check 1 of my "mothers" the other day and the conversation turned to "tea brewed from the soursop tree leaves". Apparently the word on the streets (these days or maybe i just found out) is that this tea is better for cancer patients than chemo; some go as far as to say that it cures cancer. hmmmmm, if it cures cancer, what might it possibly do for MS??? i did some digging around and it's supposedly an immune strengthener and has quite a few medicinal benefits, so yes, i've started drinking soursop leaf tea :-) I figure it cyah hurt, what do i have to lose? the kicker tho is that it makes u sleepy!!! UGH!! so i hadda watch when i drink it so that i don't fall asleep on any of the numerous calls i have throughout the day - lol
too bad the leaves don't have just a hint of the fruit taste...
Ah gone so!
Wednesday, August 22
The Hurry Cane
I bought a new cane...i've become a monster, yes.
so u may have seen the ads on TV...they claim that, "it's the best cane you'll ever own" - that's still out for discussion. i got it yesterday and i have to admit that it's quite handy because it actually stands up on its own (on a flat surface) - if it's on carpet, u have to steady it first, but it will stand up - that is cool! on top of that, it supposedly pivots (to be like ur ankle when u walk) at the base. Now, i haven't really noticed that BUT (i guess because it's supposed to do that) it has a kind of bounce that makes it ...(what is the word i'm looking for...hmmm), well anyway i like that feature.
i also got $20 off, a travel bag (it's an adjustable folding cane), free shipping and a cane strap (one of the coolest cane accessories - if u ask me) thrown in so a good deal all around.
oh, and i have a certificate of authenticity - STOP THE PRESSES!!
it's called "The Hurry Cane"
so u may have seen the ads on TV...they claim that, "it's the best cane you'll ever own" - that's still out for discussion. i got it yesterday and i have to admit that it's quite handy because it actually stands up on its own (on a flat surface) - if it's on carpet, u have to steady it first, but it will stand up - that is cool! on top of that, it supposedly pivots (to be like ur ankle when u walk) at the base. Now, i haven't really noticed that BUT (i guess because it's supposed to do that) it has a kind of bounce that makes it ...(what is the word i'm looking for...hmmm), well anyway i like that feature.
i also got $20 off, a travel bag (it's an adjustable folding cane), free shipping and a cane strap (one of the coolest cane accessories - if u ask me) thrown in so a good deal all around.
oh, and i have a certificate of authenticity - STOP THE PRESSES!!
it's called "The Hurry Cane"
Tuesday, August 21
the TIny White Pill
so i've spoken about the pill i now call "my sleepy pill" before; it's called Zanoflex and is a muscle relaxant (it's for my Spasticity). when my doctor first prescribed it, he told me to take 2 mgs 3X a day and then increase to 4 as it becomes tolerable - that was how many years ago and i still take 2 mgs because that shit KNOCKS me OUT!! it's amazing just how sleepy i get after popping 2 mgs...in fact i decreased to twice a day because it would mash me up in the mornings at work and that was just unacceptable. so...i would take it at 4pm and then again at midnite and when i took it at 4, best believe by 5 i was beppin, sometimes almost falling off my chair fus i was sleepy!
well one day sometime ago, i didn't take it at 4 for whatever reason, ended up taking it at 5 instead and guess what? nothing happened - i didn't nod off, no close calls falling off my chair - nothing! I thought that maybe it was just a fluke so i tried it a few more times and discovered that 5 works (guess it has something to do with my internal clock?)...so these days, I get a reminder at 5 to take it so that it doesn't interrupt my day...of course, if i make a mistake and take it at 6 - all bets are off! LOL.
Something that's even weirder altho i've made this one make sense in my head. On the weekends when i take it at 8 and it has no effect whatsoever on me? i figure that's because i'm not waking up at 6something in the morning (as i do during the week) and my body actually doesn't mind waking up at 8 to start the day.
who knows? makes complete sense to me!
well one day sometime ago, i didn't take it at 4 for whatever reason, ended up taking it at 5 instead and guess what? nothing happened - i didn't nod off, no close calls falling off my chair - nothing! I thought that maybe it was just a fluke so i tried it a few more times and discovered that 5 works (guess it has something to do with my internal clock?)...so these days, I get a reminder at 5 to take it so that it doesn't interrupt my day...of course, if i make a mistake and take it at 6 - all bets are off! LOL.
Something that's even weirder altho i've made this one make sense in my head. On the weekends when i take it at 8 and it has no effect whatsoever on me? i figure that's because i'm not waking up at 6something in the morning (as i do during the week) and my body actually doesn't mind waking up at 8 to start the day.
who knows? makes complete sense to me!
teeny, tiny little white pills
Thursday, August 16
Y Multiple Sclerosis?
I've talked bout this before; the absolute worst thing (in my book) about having MS is all the unknowns. Yesterday, I talked about life having no guarantees and the uncertainty of it, well MS has no guarantees either. As i mentioned yesterday, I've heard of a few deaths and shit that just seemed to happen for no reason out of the blue and i guess i couldn't help but become...a little reflective maybe?
Anyhoo, why the hell do i have MS? i wish i knew. Don't get me wrong, i'm not lamenting or having a "woe is me" moment, i just really wished i knew why i have it. I develop reference material at work and 1 of the things that we've adopted is including a "why" statement so that associates understand the need for what we ask them to do. If someone knew why they are doing something, chances are they'll be more likely to do it. well, if i understood why i have MS, i'd be more likely to accept the fact that i have it. I'd be able to link it to something that happened (maybe) way back when if u will. Honestly, secretly, i believe that i have it because i contracted pneumonia as a child - i was somewhere between 10 and 13 (it was around carnival time too and i was so MAD because i had to stay at home instead of going to the stands to watch/lime - STEUPS!! and i think i remember seeing G and dem on TV too) - but what the hell do i know since i got my "medical degree" reading the internet!
Back to those uncertainties of MS, you jes never know day to day what it might/could throw ur way for u to deal with. Every morning, i'm thankful that i wake up, can move and nothing's changed overnight. i don't remember where i was flying to/from one time and an air-hostess asked me what was wrong. when i told her about the MS, she told me that one morning her sister woke up and couldn't move from the neck down. she'd since recovered but how friggin scary must that have been for her!!
a few weeks ago, i asked G if from what she can see, does she think that i've deteriorated (my walking disability), she said no, but for some reason, i've convinced myself that i am getting worse. Do i feel worse? not really, but there's just something...i can't put my finger on it really but...
I don't live in constant fear of what could happen, but the thought's always there...at the back of my mind...lingering/chillin/hanging out...
P.S. thanks Heidi for those creative vibes, looks like i actually "caught" some of them :-)
Anyhoo, why the hell do i have MS? i wish i knew. Don't get me wrong, i'm not lamenting or having a "woe is me" moment, i just really wished i knew why i have it. I develop reference material at work and 1 of the things that we've adopted is including a "why" statement so that associates understand the need for what we ask them to do. If someone knew why they are doing something, chances are they'll be more likely to do it. well, if i understood why i have MS, i'd be more likely to accept the fact that i have it. I'd be able to link it to something that happened (maybe) way back when if u will. Honestly, secretly, i believe that i have it because i contracted pneumonia as a child - i was somewhere between 10 and 13 (it was around carnival time too and i was so MAD because i had to stay at home instead of going to the stands to watch/lime - STEUPS!! and i think i remember seeing G and dem on TV too) - but what the hell do i know since i got my "medical degree" reading the internet!
Back to those uncertainties of MS, you jes never know day to day what it might/could throw ur way for u to deal with. Every morning, i'm thankful that i wake up, can move and nothing's changed overnight. i don't remember where i was flying to/from one time and an air-hostess asked me what was wrong. when i told her about the MS, she told me that one morning her sister woke up and couldn't move from the neck down. she'd since recovered but how friggin scary must that have been for her!!
a few weeks ago, i asked G if from what she can see, does she think that i've deteriorated (my walking disability), she said no, but for some reason, i've convinced myself that i am getting worse. Do i feel worse? not really, but there's just something...i can't put my finger on it really but...
I don't live in constant fear of what could happen, but the thought's always there...at the back of my mind...lingering/chillin/hanging out...
P.S. thanks Heidi for those creative vibes, looks like i actually "caught" some of them :-)
Tuesday, August 14
oh Boy
I havent been around for a while...it appears that i'm suffering from some kinda writer's block or something. I have a few "started" posts, but just haven't been able to finish anything.
Within the past 2 months, i've been reminded of just how fragile life is and that things/people mustn't be taken for granted, so just wanted to remind you out there that life has no guarantees; you just don't know what tomorrow will bring - if it even ever comes.
Within the past 2 months, i've been reminded of just how fragile life is and that things/people mustn't be taken for granted, so just wanted to remind you out there that life has no guarantees; you just don't know what tomorrow will bring - if it even ever comes.
Tuesday, August 7
Last Week Friday
I went into the MSCA for my monthly "fusion"/"juicing" session, #27!!! (time flies when u're having "fun") While i was there, i tracked down the chick for whom i left the voicemail regarding the fundraiser event and discussed it with her. She was very excited that i'd decided to do the event with them (over any other organisation) and thanked me many times. I'm happy to be working with them - as i mentioned before, it really is my 2nd "Cheers"(where everybody knows your name, and they're always glad u came). In fact when i went in on Friday there were a slew of new faces at the front desk and just for a quick minute, i was a lil upset because my normal folk weren't there. lol. as it turns out, i will have to break in these new people because they are there to stay (people move on Stacey - get over it)...
anyhoo, i saw this older man there (i've seen him before). in fact the last time i saw him, he appeared to be having problems swallowing; he was in much better shape this time around tho. he's in some type of electric wheelchair, but then on top of that, it appears that he can't talk - now, this is all my observation - he just makes loud noises when he needs to get someone's attention - is it the MS? i haven't a clue. I learned later that his wife comes in with him. She was standing around waiting on him and saw me walking past. i wasn't struggling at the time but clearly i don't walk like everyone else so as i walked past, she said some encouraging words to me and then we started talking. She didn't get into a whole lot of details (she was telling me about some of his progression) but as the conversation went on, i couldn't help but wonder if this is what is in store for me in the future - there just seemed to be similarities - his walking, problems with his hand. I'm thinking his case is extreme and so far mine is not. Admittedly, it was a fleeting thought but...
He was juicing up at the same time and at some point during the process, he started making the noise. one of the nurses kept asking him different questions to determine what was making him so agitated but she just couldn't get to the bottom of it. Eventually, another came over to help and as it turns out his leg had extended too far out (he was sitting) and all he wanted was for them to bend it and bring it in closer to him. I wasn't close enuf to determine if under the noise he was actually saying 1 or 2 words for them to figure it out, but it must have been so frustrating for him trying get everyone on the same page.
Again, i don't know if he only has MS or even if the MS is the cause of it all, but of course i couldn't help but think that this disease is such a wretched, wretched disease.
anyhoo, i saw this older man there (i've seen him before). in fact the last time i saw him, he appeared to be having problems swallowing; he was in much better shape this time around tho. he's in some type of electric wheelchair, but then on top of that, it appears that he can't talk - now, this is all my observation - he just makes loud noises when he needs to get someone's attention - is it the MS? i haven't a clue. I learned later that his wife comes in with him. She was standing around waiting on him and saw me walking past. i wasn't struggling at the time but clearly i don't walk like everyone else so as i walked past, she said some encouraging words to me and then we started talking. She didn't get into a whole lot of details (she was telling me about some of his progression) but as the conversation went on, i couldn't help but wonder if this is what is in store for me in the future - there just seemed to be similarities - his walking, problems with his hand. I'm thinking his case is extreme and so far mine is not. Admittedly, it was a fleeting thought but...
He was juicing up at the same time and at some point during the process, he started making the noise. one of the nurses kept asking him different questions to determine what was making him so agitated but she just couldn't get to the bottom of it. Eventually, another came over to help and as it turns out his leg had extended too far out (he was sitting) and all he wanted was for them to bend it and bring it in closer to him. I wasn't close enuf to determine if under the noise he was actually saying 1 or 2 words for them to figure it out, but it must have been so frustrating for him trying get everyone on the same page.
Again, i don't know if he only has MS or even if the MS is the cause of it all, but of course i couldn't help but think that this disease is such a wretched, wretched disease.