Today

I'm hating MS for Matt!  Matt's 22 and he's trying to be positive thru it all but (understandably so) he's getting tired of the shit!

this disease really is a BITCH!!! (in fact they all are)

the Waiting Game

i'm playing that waiting game again - patiently waiting to hear the word that the new drug manufactured by Biogen has been approved by the FDA (it was submitted earlier this year for a "fast tracked" approval - 10months time which would mean that we should be hearing something any day now).  I'm this close {-} to deciding that i will switch to it once it becomes available just so that the dark cloud looming over me right now (the risk of contracting PML) can go to hell!  of course, it will be a new drug...so there are risks there too but...

I really do hate to have to make these kinds of decisions.

yesterday my phone rang; it was Cmus and he said that he'd seen something about "something called BG12 on CNN that has proven to slow down the progression of MS so i didn't know if u knew about it, so wanted to share..."i instantly got excited because i thought that it was approved.  Alas, it hasn't yet but i couldn't believe that i've reached the point now where i get excited because new drugs may be available to me - whoa!  when did that happen, funny how priorities in ur life change as things happen.

even tho the drug companies have made progress over time, it's unfortunate that all the available therapies are only for patients with the relapsing remitting form of the disease.  there isn't anything available for patients with the progressive form.  I'm assuming (i don't know) that they can take the other drugs that some of us take (Baclofen, Zanoflex etc) but there are no disease modifying drugs available for them.  it's time that someone/a company takes that on.

anyhoo, so more to come...u know i'll let allyuh know how things progress.

Breathing

after reading I Hate AC, H-oye emailed me and asked me if i do deep breathing exercises or anything along those lines.

Breathing - it seems simple enough right...i mean without breath i wouldn't be writing this and u wouldn't be reading it; simple right?  thing is, DEEP breathing really goes a long way to help when i find myself in awkward situations.  years ago in yoga, the instructor would instruct us to breathe using our bellies, belly breathing.  Deep breath in(to) ur belly (thru ur nose) - so ur abdomen is expanded instead of ur chest when u take that deep breath.  this is believed by some to be a healthier way to get our oxygen and is sometimes used as therapy.  well the truth is, it really works.

Anytime i find myself in a weird position or i want to calm myself down (say, after a fall and my body seems to stop working), a few deep "belly" breaths usually does the trick and once i'm calm, things go bad to "normal" and i can move again.  My "problem" is that i haven't made a routine of it.  I need to just set aside some time daily to practice OR better fete, incorporate it into some of my daily routines and just spend a few minutes breathing before and/or after i do certain things.

Deep breathing really comes in handy when i have to deal with people on the phone who screw up my name and such.  the other day i was talking to a woman trying to get an explanation of  something that had happened a few minutes before and she said, "u must be confused" and right at that point, i lost it and was bout to cuss her ass out but instead i took a few deep breaths and i calmly told her, "don't tell me i'm confused" and continued the conversation (it was MS related; had to do with my shipment of medication, so i had to get the situation resolved).  i was so proud of myself and told G when she got home that she too, would have been proud of me because it's so hard for me to keep my cool in some situations.

Anyhoo, try it some time...Deep Belly Breathing - it works!

Leaps and Bounds

so the the drug companies appear to be making some serious progress in terms of research..a new disease modifying drug (another oral option) has been approved by the FDA - if only they could find a cure...

i think back to when i had the conversation with the woman (wasn't my doctor) about my treatment options and she told me that i had 4(?) options that were all injections and i couldn't believe that i had to choose 1.  nowadays, patients have so many more options and can pick whether they want to endure injections vs popping a pill which is so very good.   Of course i've mentioned this before but without root cause, it's hard to find a solution.

how would they be able to cure it if they don't even know what causes it in the first place so until that happens, i'm not holding my breath for a cure.

• am i thinking about switching? nah...i'm holding off for yet another one that was submitted for approval earlier this year.  
• will i actually switch at that time?  don't know, but it will definitely give me some more food for thought and it'll be decision making time yet again (stay on Tysabri since i'm JCV+ or start a brand new drug) - ugh...nothing is ever easy.  

the drug is manufactured by Biogen (the same company that manufactures Tysabri) and was submitted in the hopes that it would be fast tracked for approval.  it's also thought to be more powerful than Gilenya - not sure how it compares to this new one, so we'll see.

Ah gone so...

They Were On to Something

well i guess the people knew what they were saying when they said that, "it's the best cane i'll ever own"...i have to admit that i haven't used any of my other canes since i got it cept to go out; it just isn't snazzy enuf for me to go out with ;-)

so of course there was a reason for my last rant.  it's funny tho...after i wrote it, it occurred to me that i don't ever think of myself as "being sick" altho i guess i am.  Anyhoo, so we gearing up for Miami carnival so we have to figure out where we staying, who staying, which fetes we going etc.  and naturally, my needs have to come into play.

• if we staying in a hotel, remember i need the handiapped room, 
• if is a house, does it have a walk in shower?
• where are the fetes, does it make sense for me to go?
• how far is the boat / how big is the pier in which the boat is docked? 
• i can go on and on...

now don't get me wrong, it's not a problem for anyone else involved (for me it is sometimes), but like i said, it's such a big inconvenience.  luckily, most of the venues have not changed over the years so we kinda know what we working with but sheeeitt - i just haven't really gotten used to having to make sure that things are in order for me - it's something that i know i have to do (and so does everyone else around me; it's just a given - noone thinks twice about it) but doesn't mean i have to like it.  

GRRRRR!!

i hate being sick; having MS!!

that's all; no funny stories, no lamenting or feeling sorry for myself.  i just hate it; it's a pain in my ass and a big inconvenience.

False Positive and...

i went for my "fusion/juicing" on friday and was told that they are going to retest me for the JC Virus to rule out the chance of a false +ve test.  I told the woman (in my usual pessimistic way) that there was no need to retest, in my opinion, because it'll come back +ve again- no false results round here.  steups...not sure exactly when i'm going to get the results, but anyway.

so i've noticed something that happens and it kinda scares me but...with anything that happens (more than once and) out of the ordinary, i take note and run it by whomever i see when i go in for the infusion.  i've noticed this 3 times so far - don't remember the first time it happened, but definitely took note the 2nd and 3rd times...

someone will say something to me and i think of something completely different - WTF?!?!  like i said, the 1st time it happened, i was having a conversation with G and i only remember saying to her, "oh, u said (whatever) and i was thinking (whatever)...the 2nd time, someone said, "yeah chemotherapy is not good for cancer patients" and i said, "really?" and in my mind i just didn't understand how the 2 even went together.  why?  because i was thinking of CHIROPRACTOR.  the 3rd and most recent time, someone said to me, "yeah i'm flying into Ft. Lauderdale airport because it not that far from Miami".  he clearly didn't notice the "deer in the headlights" look that i gave him (because he jes kept talking) because i was thinking, "r u a mad man, y would u fly into Orlando to go to Miami???" (for those who don't know, Ft. Lauderdale and Miami are about 30-40 mins apart where as Orlando is bout 6hrs north of both).

Friday when i went in, i ran it by Beverly (hopeful that there was no relation and it was just a fluke) and of course, it's an "MS thing".  it scares me; it's hard enuf to deal with the physical problems that i have, does this mean that it's starting to attack my cognitive thinking and i'll have to deal with that too or is this just a flare up that will last for a specific length of time and then go on its way????

*sigh*

Ink II

I can't really express how touched i am by this...

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.

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.

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!

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"

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!

teeny, tiny little white pills

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 :-)

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.

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.

Donations

this post is way overdue.  I've been meaning to write about this since the MS walk and never got around to it but now is as good a time as any because something else has come up to which the situations is related.

During the time leading up to the MS walk, i sent out emails for donations to raise money for my team.  Of course, i cyah get vex with anybody if they doh feel like donating - i send out the emails and hope for the best.  well i was talking with a friend (we'll call him B) a few weeks before the walk and eventually the conversation came around to the walk itself and he said to me that he got the email, but he wasn't going to donate.  i didn't ask y (because again; u want to donate? cool...u don't want to donate?  cool) but he went on to ask me just how much of the money would actually go to me or patients like me and i really couldn't answer that.  he explained that he preferred to give money to  causes where he could actually "see his money at work" (so to speak) and not to those large societies, corporations etc that might sink the money into research, but the patients see no immediate, real benefit....


Jump to today


the Georgia Caribbean Culture (GCC) committee is going to be having a masquerade ball in my honour in November.  It's going to be a benefit function to promote MS awareness and part of the proceeds will go to the MS Society of GA***wait, wait, wait...i remembered B and thought to myself (selfishly probably), "why should we give the money to the MS Society?  i would much rather if some of the proceeds go to the MSCA"  The place is my 3rd "Cheers"; i'm there every 4 weeks hanging out for 4 hrs "juicing" (term coined by G2), my neuro is there, they are a non-profit organisation and...i can go on.

I'll feel much better working with them on this project than the society - this is my "home"...so i went to a meeting with GCC last nite and told them the new plan.  I left a msg for - who i think is the right - person at MSCA to make it happen (push comes to shove, i'll be there on Friday to juice up).

so!  if u're in the Atlata area on 11/17 and looking for a something to do, lemme know - it's for s good cause :-)

Karma

most certainly is a bitch!

Friday nite i made a joke about falls happening in 3s...u've heard about the old people saying death occurs in 3s right?  so it was a play on that.  well guess what happened!?!

those MS gods said, "eh heh...u have jokes??  well take dat!!" and I fell TWICE friday nite!!! ah shit!

they were "good" falls - nothing to write home about, but i'm now up to 11.

People Never Cease to Amaze

I went to a restaurant by myself on Sunday.  The place was quiet - not too many people at all but as i was walking out, the host approached me and offered to hold my leftovers, then he said, "i can also hold ur purse if u'd like, i wouldn't steal it."  At that point, i figured well hell, if he wants to hold all my stuff, i might as well take advantage and hold on to him to walk out.  He ended up walking me all the way to my car, making sure i was strapped in, closed my door and watched me drive away.  can u say service?  lol  Maybe i have very low expectations of people in general so when someone goes out of their way to help me (even when i'm not struggling (in my book, i guess)) it really kinda blows me away - maybe i should get over that.

so...i fell this morning (wee hours), which means i'm up to 9 for the year.  I won't get into a whole lot of details but i woke up, got out the bed and .....  it wasn't bad but it was quite painful - i might have a bruise but it is what it is.

Everything else has been real quite, u know what they say, no news is good news - i've not been suffering thru anything weird or new and shit has been stable.  I've been really busy at work and me and Dragon have been getting along much better.  i still have to reread everything that it types and correct words here and there but for the most part it's working out quite well.

Ole Talk Thursday

so using the Dragon software is getting better only because i've been using it only to dictate and not to do EVERYTHING else that it's supposed to b able to do.  I have to speak "properly" of course, for it to understand.  Some of us come up here and develop what we refer to as a "fresh water yankee accent" but i cyah/refuse to do that shit, so my "work speak" is much slower that my "lime speak" so that everyone (and now Dragon) can understand me.  it's funny as hell to see what it types when i speak "normal".  i wish i could give a little demonstration here but alas, it's only on my work laptop and i can't use that to create posts anymore.  Yesterday tho, i was typing an email to send to G and S and i thought i was speaking "properly" but u should have seen what it picked up vs. what i actually said.  HAH!!

I've never been embarrassed walking with my cane.  i seem to remember feeling a little self conscious the first few times i used it and not using it all the time (remember this story?  LOL) but never embarrassed ...but i've come to realize that i'd prefer to get out of my car when no-one is around.  it's not that i feel embarrassed, but sometimes it's just not an easy, fluid motion - hardly ladylike or graceful (some may argue that they woulda never use those 2 word to describe me anyway, but that's not the point :-)).  Of course, by the time i get out and start to walk, it's obvious that something is wrong with me, so maybe u can understand y i got out how i did, i'd just rather no-one is around to see.

I've talked about side effects of medication in general and i've spoken about PML (1 of the side effects of Tysabri) but a side effect of 1 of the other pills i'm popping is seizures (happy happy joy joy).  The other night i had a weird experience and by the time i'd thought it thru i'd wondered if i should be concerned about a seizure.  Turns out it was an isolated experience and nothing to be alarmed about - whew!  it still had me kinda thinking tho...

alright that's enuf for today...besides i have a conference call to go and join.  so, allyuh have a GREAT day until next time...

  

Friday 13th

so i shoulda know better than to go in on Friday 13th to get my installation eh?  i tell u!!!  the story does end well - i finally got the software.  good thing the branch closes at 6 on Fridays because after having to reboot and restart the installation TWICE, it was finally over at 5:39!  i won't get into the story of my using it, but suffice it to say that i was so friggin frustrated with it yesterday that i completely shut down (after bout 2 hours) and went and lime instead.  I made a little more progress this morning with it but i still have far to go.

i going and ole talk for a bit...

saturday morning i woke up, got ready to go to the barber and "trotted" (as only i can trot) downstairs...while sitting having my breakfast, it occurred to me that i didn't have my pills - SHIT!!  so now i have to go BACK up, get them and come BACK down - AGAIN...u have to understand, sometimes when these things happen, they put a damper on my mood because i'm just not sure how i'll function for the rest of the day after all the extra trekking up and down...Steups!   Turns out that all was well for the day but it dawned on me while coming back down that, "ahhah!  i have some extra pill boxes (from the time that i had to order a new "weekly" pill thingamajig so now i actually have 10 cases because i was recycling 3 prior to ordering) so i can have a extra supply on the 2nd floor in the rare instance (it really does happen very rarely) that i forget the pills upstairs.   I've since filled those puppies up and stored them in the kitchen.

Needless to say, i was pleased as punch with myself for having that BRILLIANT idea :-)  anything to save me from walking unnecessarily deserves a pat on the back