HMPH!!!

There is an upcoming boatride in NY to which i'd planned on going.  I haven't gone anywhere for the summer and i've actually been thinking that i haven't been to NY in a long time, so what the hell - this was a perfect opportunity to kill about 6 stones at once.   Now truth be told, i've been hemming and hawing about going NY because it's such a "walking" city that i am a lil afraid of going - but a few friends i've spoken to up there say, "doh worry - we will work around that; daiz no problem"...i've still been a little hesitant.

I'll only mention 1 "name" in the following story...

so G comes home one day and says, "i got a call from person and a good point was brought up, i suppose...maybe u shouldn't go on the boatride since we aren't all going...suppose something were to happen on the boat...getting u off may be a problem..."  now, i never gave this any thought, but it is a valid point...i don't put myself in situations that i know i (or my friends) may not be able to handle, but something like this?  no....never thought that IF something were to happen on the boat....then she said, "it's ur call - whatever u decide to do is fine. I asked person why they called me and not u, but there was no real reason, anyway u'll get a call tonite"  i said to myself, "self...what are the odds of something happening on the boat; it's a valid point....hmmm" we continued talking and laughed at a few things and moved on...i continued looking for tickets.

2 days later i got a text from the person that said, "we were discussing it and we think that the boatride in ATL will be better for u to attend...call me".  i read it,  got pissed off and insulted instantly and in that moment, i decided "Fuck it, i'm not going".  i responded right away with, "it's okay - i not going".  person responded with, "what? am i not worth a call to discuss?"  At the time, i wasn't in the mood.

Now...i cyah tell a lie...my reaction surprised me - i'm not usually one to get pissed off at alot of things, but i really was pissed that day.  I think it was the "we" in the text message that did it because i was thinking "what the???!!!???" I'M the one who's sick not anyone else, so why not discuss with me - i didn't care who the "WE" was.  I also got pissed because I have MS and i can't help it nor can i do a whole lot about it so again - discuss with ME not WE 0 i felt like decisions were being made for me!!!  Well i didn't call the person until about 2 days later - after i'd cooled down, we talked about it and they tried to justify it, but quite frankly, i wasn't interested.  we have moved on from the incident and i hope that i don't ever have to  be in a situation like that again because it really wasn't a good feeling - at least not for me.

this is not to make anyone feel bad or anything like that, the person already knows how i felt and as usual i'm just telling my MS story.

+ve Attitude

I'm done with my pity party...i'm extremely grateful that i'm stable.  improvement would be nice, but stability is good news!

G and I had dinner with 2 friends a couple weeks ago.  P was running late so we were limin with H and having a good time for his birthday.  All of a sudden he said to me, "U are 1 of the srongest people i know" to which i responded, "why?".  I think i was honestly a little confused because i so try not to make the MS the center of anything.  The conversation went on and he continued that i am always smiling, never letting anything get me down and he thinks that my attitude speaks volumes...everntually i said thank you and we moved on...

an hour or so later, P showed up...good times, lots of laughter, drinks, good food and he says, "u know u are the most positive person i know".  it was out of left field (at least i thought it was) and he too commented on how i'm always smiling, organising a good time, limin hard and just generally very positive in spite of everything.

it's always interesting and "warm and fuzzy" to me when people tell me things like that.  i don't think of myself as a strong person nor do i think that i'm very positive in fact a more cynical pessimist u'll not find.   I have come to realize that i am actually dealing with the MS in the best way possible and in general i don't let it drag me down.  Back in the days when i would say "screw u MS" and do things that i shouldn't, the bad days might have reared their ugly heads more, but now that i know my limitations and don't do anything stupid, they are few and far between.

so...stability is GREAT - improvement will be greatER and i'll shout it from the rooftops, but until then I'll take stability any day!!

PT Assessment

well...my PT did an assessment of me this morning - it's been 90 days since i've started going...


i didn't test worse than i did when she did the initial evaluation (great news, i know!), but shit, is it really too much to ask to see an improvement (anywhere)????  On the scoring scale she uses, i believe i was 1 point better - in their book it must be at least 5 points for them to say, "yes, she's improved!"...so as far as she is concerned, i'm stable - good news, yeah, i know but shit!  i don't think it's too much to ask to see something positive once in a while.

Dr.'s Visit

It's been a while....i was on vacation last week - and what a great vacation it was!

anyhoo...so i went to my neuro yesterday for a regular follow up and nothing really to report.  he confirmed that the MRI shows no progression (good news), he was disappointed that i haven't seen any improvement in my gait from the Tysabri (bad news).  Also, the last time i was in to see him he said that they would draw blood to test for the the presence of the antibodies that causes the brain infection - well they never did that.  I assumed that 1 of the vials drawn during 1 of my infusions was for it.  I was wrong...so that test still needs to be done during my next infusion and i'll get the results beginning of October.

At that point, if the antibodies are present, i will be at higher risk for developing the infection and decisions will need to be made about whether to continue and tempt fate or discontinue and go on something else - decisions, decisions (as if it weren't bad enuf that i had to decide if i even wanted to start on Tysabri in the 1st place). If no antibodies present, i'm in good shape and can continue on Tysabri.

He asked me if it's working and i had to be honest and tell him that i had no clue.  I suppose it's working because i have no additional lesions on my brain or spine and no exacerbations recently, but other than that, i can't be sure.   I was hoping for a walking improvement - so many people say great things about Tysabri, "it's the most aggressive drug on the market...blah blah blah", but if you ask me, it's on the same level as all the other drugs available - oh well...wha yuh go do?

Skechers Shape Ups

 

They apparently tome yuh backside, legs, calf muscles and while doing all that also improve your posture.  My sneakers were laughing(on the sides) so they were on their way out and so i decided to a buy a pair of Skechers.

Well!  Me eh know if they will actually do all of the above - that's not why i bought them.  what i do know is that they actually have been forcing me to walk properly - heel to toe.  My feet tend to drag alot so i don't always do the heel to toe action - in fact 1 of the things that my PT wants me to concentrate on is lifting my feet and walk heel to toe - even tho it may feel like i look weird.  i think  i have the heel to toe action because the sole of the shoe is curved (and soft - it claims to sumulate walking on sand) so if i didn't walk properly i might have problems(?).  Hell if i know!   I remember that Dee mentioned Skechers Tone Ups to me once before but I'd never done anything with that info. 

Of course G and I went to the shoe store together to buy them because we both wanted to be sure that i could actually stand and walk in the damn things because of the shape.  - when she saw me walking in the store, she said, "Yuh mean after all this time, all we had to do was buy some skechers?!?!?"

Well now here i am with the Shape Ups and i believe it was money well spent.

interesting

i spoke to my doctor's nurse at the MSCA about something else today and mentioned to her that the claim was denied because the MRI was not pre-certified.  When she heard that she seemed quite distressed (i could almost hear her tsktsk-ing) but then she looked in my file and found the APPROVAL from Aetna along with a reference number!

hmmmm...

Insurance Claims

so i got a notice in the mail from Dekalb Medical which is where i went the last time i fell.  the notice stated that it had been 30 days and they hadn't heard from Aetna as yet re:payment.  The balance on the account was somewhere between $1500 and $2000 (for a CT Scan) but when i looked at the bottom line "Pay this amount" it was 0.00 so i breathed a little easier.  well that prompted a call to Aetna to find out what the problem is!

First thing i did was check my claims online and sure enough i saw that it was denied - great!  Anyhoo, so i made the call.  Come to find out that it was denied because it wasn't pre-certified (approved) by Aetna...and then the lady said if it isn't pre-certified the only time it might be paid is if the doctor diagnoses it as an emergency.  So i said, "well it was an emergency - i'd fallen and was in the ER."  i was told that since i was coherent I should have told the ER nurse/doctor to make sure and pre-certify the scan before anything was performed.  I told the woman that that was the dumbest thing i'd ever heard.  I mean who has time to think about those issues when u are in an ER and worried about whether or not you'll come out in 1 piece or what they are going to tell is going on in that body.

while she was spouting off at the mouth, i continued looking at my claims and noticed yet another 1 was denied - the last MRI.  i asked her about that one - and again she told me that it wasn't pre-certified.  Now that, i'm mad about.  The MSCA had no business doing it without it's being pre-certified - they ALWAYS do it.  Now y they wouldn't do that this year?  who knows! 

On the upside, i haven't gotten any bills from either place (YET?!?)...so I haven't gotten my panties in a bunch or putting on my armour to go to battlle with anyone - YET!!!

June 17th

oops...i missed Father's Day...hope all the fathers out there had a great day! 

Obs, i know you had a great day!

Driving

it took my PT to point this out for it to dawn on me...1 of the reasons that driving is not a problem is that i don't drive with my left foot - that damn weaker 1.  Good thing that G cyah drive stick because that's the ONLY reason that i own an automatic car.

to test the theory, while i was driving home after i left her office, i tried to move my left foot as if i were using it to drive and it really wasn't as responsive/that easy to do.  I'm sure it's not the only reason because even when both legs/feet want to act up, i can get behind the wheel and be okay but it definitely is a big factor - can't believe that it never occurred to me - DUH!

Reminders

I have a small bump that hurts (feels sore) only when i press it.  It's at the end of my left eyebrow - a constant reminder of my last fall (as if i'll ever forget)!  it's very small; doesn't bother me at all, but it's there. 

the other thing that i've noticed is that the skin under my eye is darker than usual, but only on some days.  It's so weird...2 weekends ago, i washed my face and looked at myself and was actually kind of alarmed.  When G saw me a few minutes after that i saw her watchin me hard and when i said, "what?"...she said, "ur eye".  we both noticed on that day that it was darker than normal and since then i noticed it again this morning! 

No rhyme or reason...go figure!!

i Knew It!

Steups...they only did a cervical (my neck) MRI - they didn't do my spine...GRRRRR!!!!i knew it was just too good to be true.  STEUPS!!!!!  i don't know how they are going to handle the fact that it wasn't done yet.  and it was actually the one i was looking forward to the most, since i know that i have scarring on my spine and was really curious to see what might be going on there since last year.

Anyhoo, so the neck one was good...it shows no sign of disease progression - that is great news! 

so... that means, the brain is clear, the neck is clear and uncharacerstically of me, i'm thinking that the spine is clear too.

Motorized Carts

I think i've mentioned sometime before that now when i go to the grocery i use a motorized cart to get around.  I cyah bother fight with walking around with a cart  and so i finally came to the realization that there's nothing wrong with using the carts - that's what they're there for.  Those things are not as easy to manouver (sometimes they go much fast than u really want - esp when turning) as you'd think.  I've gotten used to them (for the most part) now but it was a little touch and go at first. 

Usually if u just let go of the controls, the thing would stop.  I remember 1 time that wasn't happening...so i would let go of the controls and the cart would still keep going for just a few seconds before coming to a complete stop.  Well by the time i was done and had to leave, i wasn't thinking about that and as i tried to look left and right for cars as i rolled out of Kroger (down the slight incline) i zoomed right into the street.  Luckily i was able to steer it to the side so that i didn't have an accident with the car that was coming.

A few months ago, i was going to get some bananas.  There was a man standing right at the banana stand, picking his bananas.  I approached and realized that i could not make it into the tight space that was left (there were 2 other people there), so i patiently waited behind him for 1 of them to move before i went in.  well between me and my motorized cart and all the other carts/people, i had to reverse to let someone out.  Don't u know i used the forward control instead of the reverse and ended up jamming said man up against the banana stand.  Naturally i was mortified and of course, i was a little flustered so it took me a few seconds longer than it should have to throw it into reverse (as i should have in the 1st place).  If i'm not mistaken, i saw the woman who was with him, chuckling to herself (and trying hard to hide it) at the sight of him jammed up against the bananas - i also had to keep myself from laughing out loud after the mortification passed.

yet another example of a funny situation that i find myself in sometimes as a result of this disease - LOL!!

Cursing the MS Gods

I spent all day cursing the MS gods.  I have PT every Tuesday morning and the last thing my therapist does before i walk out of her office is stretch me out - it's my favorite part of every session.  Well this morning was no different, except she did a new stretch - ok, no biggie.  while i was walking out, i felt a little out of sorts, but i just chalked it up to the new stretch and paid it no mind.  i get home and 3-4 hrs later i find that i am still feeling and walking really badly.  I'm thinking, "ok, must tell Allison that she can do that stretch no more because i can't have it messing up my entire day like this again." 

little background here...my alarm starts going off at 6:45 when i have to go to work (i say start because boy do i snooze), then it goes off again at 8 for medication.  Well on Tuesdays, i have to wake up earlier because my appts are at 7:30.  So i have a separate 1 set to wake me up on Tuesday mornings and the 1 at 8 doesn't even go off because that'll be in the middle of our session, so i take the meds just before i leave the house.   

As usual, at 4:00 i get the reminder (no alarm during the week, i just have an Outlook reminder) to take the afeternoon pills and wouldn't u know it  - the am pills were still in that section.  Funny thing is, i have a vague recollection of taking them, but who knows maybe that memory was from yesterday - altho i could swear that it was this morning.  This has happened before so i am confident that it had nothing to do with the new stretch or the MS per se, it was just the fact that i didn't take the pills!

So now, the MS gods are looking down and cursing ME for once again blaming them/it when they did absolutely nothing out of the ordinary.

MRI Time Again

So i had a 2fer last week Friday...had to go in for infusion #14 (time waits on no-one; can't believe it's been so long already) and did my neck & spine MRI on the same day.  The MRI was scheduled first, but they sent me in the infusion room for the nurses to set up my IV "so that i wouldn't have to be stuck twice" - LOL!!!  (when they do the MRI, they inject me with a dye so that the lesions/scarring would show up more clearly so the thought is that they would use the same IV site that the nurses set up for the infusion.)  As  they say  down here in the south, "Bless their hearts"...they really mean well, but on the day that I'm only stuck twice I'm extatic! As it turns out, i was stuck twice to set up the IV - such good times.

Anyhoo, so i was about to go into the tunnel for the MRI and i asked the radiologist if i should settle in for about an hour and she said, "no...it'll only take about 15 mins".  15 mins????!!!!   She couldn't be serious.  For real????  I'd adjusted my medication time so that i would fall asleep right about the time i was in there...i was skeptical and even wondered if she knew which areas i needed to have done but i didn't say anything (i should have - if they didn't get all areas i don't think that Aetna will pay for another), i mean i was scheduled for a neck and spine MRI so she must know what she was doing.  I couldn't believe it - about 15-20 mins later i was out!  i think that it was the best MRI i'd ever had done - even though i think that i dint insert the ear plugs properly because it was extremely loud in there (louder than normal, but then again, this wasn't a normal MRI experience)!

No results yet; i thought that i would have been able toget them soon after, but i couldn't.  I called this morning and left a message so hopefully someone will call me back soon with the results - fingers/toes/legs/eyes all crossed that there's been no progression.

Cane Holder

a very simple looking thing that, when i got it in the mail, i thought - this is some bullshit; how the heck is this supposed to work??? in fact, if OB wasn't here at the time i probably would have sent it right back to Amazon and asked for my money back!

well wasn't i in for a surprise...the thing actually works so damn well it's not funny.  it essentially holds the cane upright when it's placed against any straight edge (table, countertop, anything like that); it's not as savvy if the edges are rounded but it stilll is better than trying to lean it up somewhere. 

well...a few fridays ago we went out...hit 2 places that nite and had a whale of a time.  I woke up Saturday morning to go do whatever the hell i had planned and went to prop up the cane and noticed that the holder was gone!  what the?!?!  when did that happen???  Don't u know that i was feeling like a fish out of water for the entire time that i didn't have my cane holder.  I couldn't believe just how attached i'd become to the damn thing - i guess me and the cane are becoming 1 after all...

a couple days later, i promptly went back to Amazon and ordered not just 1 but a pack of 3 - jes in case!  A gal needs to be prepared at all times.

Trini Terms according to Stax

so a friend/reader who is Trinidadian and enjoys reading suggested that i create a glossary of terms for the Trini slang/terms that i use.  i have the disclaimer of "lime" at the top of the page and most times i remember to put the meaning/translation in brackets, but when i don't, anyone can refer to my new page "(my) Trini Terms Dictionary".  I have "my" in brackets as a reminder that this is MY dictionary and meanings may differ from the Cote Ci Cote La (the official Trini dictionary) - yes it exists.

Something i hear often is, "i like those Trini terms" or "trying to keep up with all the Trini terms" so i thought that the glossary of sorts is a good idea.

so it's a work in progress - i've included the link at the top...fellow Trinidadians, feel free to send me suggestions or additional/better meanings if u wish!

What I Miss the Most

the ability to dance!

I'm talkin bout "bussin ah wine (the Trini dance for soca - gyrating ur hips to the music with ot without a partner(s))", ballroom dancing, any kind of dance.  I've mentioned before that i cyah (cannot) wine no more - wining with a cane and a stiff left leg  (my left side is the problem side - it's weaker, the left leg is generally the stiff one (it always wants to be straight)) is not pretty and does not feel right, so wining is out of the question.  All i can do these days is listen to the music, sway side to side (a slight mini wine if u will) and use my cane as a prop to stomp to the beat and in fact Saturday nite, i used it as my flag/rag and was wavin it in the air :-) - UGH!!!

I used to dance when i was growing up - modern dance - and always loved it.  As i got older i wanted to learn how to tango, so bout 5 years ago, i signed up with a ballroom dancing school.  I was quite good, if i do say so myself, but had to drop out when i realized that i would need to rob a bank to continue.  I was able to afford the lessons at first, but as i advanced and got to the level where i could perform at exhibitions and such, the cost became too much and even though i might have gotten away without robbing the bank the 1st year - beyond that there was no telling.  So instead of risking jail for a hobby, i decided to let it go.  For the short time that i did it, i enjoyed myself thoroughly and as i mentioned, i was quite good.

Nowadays when i'm at a fete or see people dancing anywhere in general, i feel a tug at the heartstrings - it saddens me just a little.  When we're partying, most of my friends will come and take a wine on my chair or me (wish i had a picture to share) - just depending on the type of chair :-) and i love them for that - but it's just not quite the same.

May 24 2011

Today is World MS Day

Join the Global Movement...what does MS = to you?

MS=Lifestyle Adjustments (many lifestyle adjustments...)

Cooler Fete 2k11

Whomever came up with the "cooler fete" concept is a genius (I'm sure that most, if not all Trinis will agree).  $25 entrance, walk with ur cooler (translated, u eh spening a dime when u get there - unless u want food) full or not full of drinks.  ANY size, shape, colour, texture cooler.  I wish i had my phone as i was making my way thru the crowd to take a picture of the blow up kids' pool that i saw full of liquour (that was a 1st - at least for me).

Now, i knew that cooler fete was Saturday nite; it's the 1 fete here that i always look forward to every year and what did i do?  instead of keeping my ass quiet (see Spoon Theory) for the day, i did all sorts of things - had a massage, got my nails done, went to lunch blah blah blah...so even though i was feeling okay when i got home, by the time fete time rolled around i had about 3 spoons left!! ugh!!!  Didn't let that stop me (altho i was mat at myself) and as it turned out, we were as far from the restroom as we could have been!, so u can just imagine the mess i was in when the stupid ass cops (ASSHOLES have nothing better to do with their time but mess up a very good time) stopped the party and sent us packing!  This time around, i allowed K and H to carry me out (they formed a seat with their hands - isn't there a name for that hold?  i normally politely decline whenever someone asks if i want to be carried) because, of course, we would probably now be getting to the car if i'd walked out on my own.

Good time, altho i know better and should not have galavanted all day like i have unlimited number of spoons to play with!

Back to Normal

last week Thursday was the 1st nite since my ordeal that i didn't feel dizzy, so apart from a faint red spot under my eye, i am back to my 100%.  whew!  hopefully i won't have any more horror stories to tell for a while...someone told me last week that I'm due for a quiet non eventful next few months and i completely agree.  In fact if that is the last "drama-filled, falling" story ever, I wont' complain at all!

Atlanta carnival is coming up on Memorial weekend so getting ready for cooler fete this weekend; it's the 1 fete i actually look forward to every year because it is generally very good.  Last year at cooler fete, i had my 6 Kaliber in it because i wasn't drinking - LOL!  good times/memories.   Atlanta carnival has soooooo much potential (it's the 1st one in N. America, it's on a holiday weekend) but it's absolutely NOTHING to write home about (so unfortunate).  in fact, we will just be liming hard (harder than usual) as opposed to doing anything "carnival like" - I think; I actually thought about going to FL that weekend instead.

Anyhoo, so things are normEl on my end; no stress, no worries and things are right with the world once more!