My Thanksgiving This Year

it was kinda bitter sweet for me - mostly sweet.  On one hand, it was GREAT as usual - G and I always go waaaaaaaaaaaaay out for Thanksgiving - I'm sure that someone out there might say we do too much, but we love it, love doing it, love cooking up a storm and will continue to do so (in fact, last year we didn't do anything - i went to a friend's house and it just wasn't the same).  I was off for the entire week, G2 and family were here, both parents were here and then on the day itself others came over to eat and lime.  We had a fantastic time!

We don't ever ask anyone to bring any dishes.  We do all the cooking - cept the turkey which we buy from Popeye's; it's a cajun deep fried turkey - delicious.  Anyhoo, so G likes to cook and so she normally has more dishes to do than i, but somehow this year, i was only responsible for 4.

Here's where it got bitter - I got thru 1.5 dishes before the MS kicked in and said, "uh uh - ur ass needs to sit down and relax!"  I'd been standing for too long i s'pose and i just couldn't walk or stand up anymore.  I prepared the first dish, then had to improvise and continue preparing the 2nd while sitting at the table,  rest for a few when that was done and then use a chair by the stove to do the others.  In retrospect, i guess it was a good thing that i was only responsible for 4.  It sucked!  i wasn't happy about it!  i cursed the MS and I cursed it loud!  I just couldn't do my thanksgiving as i was used to - i didn't appreciate that at all!  I'm sure that i knew that it could/would happen, but i still wasn't totally prepared for it when it did.  oh well, wha ah go do (what can i do).

Here's hoping that everyone had a great thanksgiving with family and friends like i did!

Happy Anniversary!!!

wow!!!  who woulda thunk it!  it's already been 1 year.

I started this blog a year ago and it has evolved into something that I never thought that it would.  I've been told that "it's inspiring", "it's funny", "it's a the best thing I've read since...", "I like to see what pictures u use" and honestly I've thoroughly enjoyed writing it...Never in my wildest dreams, did i think that it would evolve into what it is now - I actually had to be convinced to start writing it!

What do u do at this stage?  I haven't a clue, but I thought that I'd share some of my favorite posts:

• My Support Group Part I
• My Support Group Part II
• Y this; Y Now?
• A Jokey Story
• The Spoon Theory
• True Story
• U Can't Make This Shit Up
• Happy"est" Times

I actually can go on but I won't.  ThANK YOU ALL!!!! for reading and for keeping me going!

Encouraging/Good/Great News

Went to the doctor today and the results of the MRI were good.

• No PML
• No activity of the existing lesions on my brain
• No additional lesions

In other words, there has been no progression of the disease within the past 6 months and maybe, just maybe, the Tysabri is doing its job.

Happy"est" Times

so OB is here.  He came in on 11/7 and he's been "terrorizing" me ever since.  He AND G are taking jabs at me every moment that they can....talking about how slowly i climb the steps, how i get into the car - jokes cyah done (continuous trash talk)!  My mother comes in tomorrow and i know that it'll be us against them for the entire time that she's here.

It's all good though - that's how we do.  I've said it before, I'll say it again - if i don't laugh, i'll cry and from where I sit, laughing is the better option!

MRI Tomorrow Morning

Well...we are here.  I am scheduled for my 1st MRI (happy times - NOT) since being on Tysabri tomorrow morning.  Luckily i didn't have to go thru the last rigamaroll (shenanigans/bullshit) like the last time because this time I'm having it done in house at the MS Center.  The other good news is that it's only going to be of my brain so it won't last 2.5 hours - i really can think of a million other things i'd rather do on a Saturday morning!

This is how the MS Center tests to see if I'm at risk for the brain infection and maybe I'll also see if Tysabri is helping at all (diminished/decreased/no additional lesions on my brain)...not sure if it's too soon to see all that - it's only been 7 months.  I have a follow up with my neuro next Tuesday so we'll see.

A Bit of a Loner

Having Multiple Sclerosis has taught me that i can lime with myself.  When we go to fetes and i have to sit in a chair, i don't expect everyone to lime around me and sometimes, they don't.  i've always enjoyed my "Stacey" time, but now more than ever i have it.

I am sure that i've always been aware of that, but it really  hit me in Miami carnival that i've become (by force) a bit of a loner.  I was on that truck for the ENTIRE day by myself, limin with strangers who may have jumped on and off - let's face it, it's not the easiest thing in the world to get on and off those things, so i certainly didn't expect anyone to do it jes to come and lime with me.

In other news...i was only stuck ONCE yesterday altho my blood, once again, was as slow as molasses going into the vials but at least they got the amount they needed this time around.  I drank much more water than i normally would, on the day of, this time so maybe that made a difference to the accessibility of the vein?  I will put the port on a back burner for now and see how things go the next few times.

HAPPY BIRTHDAY!!!!

how could i forget...

11/8/many many many years ago

HAPPY BIRTHDAY G!!!!

NOT Talkin Shit

I know i'm not talking shit.

Monday was G's birthday and we went to our home away from home, EDl.  I couldn't even bend my knees to get out of the car.  Have u ever tried to get out a car with ur legs as straight as a board?!?!?  NOT cute or ladylike!!!  I felt shame for just a moment when i almost pull down the fella who was helping me out the car! it was some stupid ass temperature like 50 or so...






today it is 70 degrees and i've been walking on my own all day!

I understand that it is natural to be stiffer in the cold i s'pose but good grief i am out of control- what the hell do i have to look forward to in December????  I am seriously going into hibernation.

it's a "tropical strain"; it prefers heat/warmth/sun...

Monday Blues

Before i started working from home, i was a BITCH on Mondays.  Those days are long gone, altho ever so often, i will be a little grumpy on a Monday.

I think my body suffers from the monday blues...i swear i am the worst on Mondays and as the week goes on, i get better with my best days being the weekends - cept now that it's cold.  the cold just totally fcuks with me; it's time to hibernate again.

Well Looky Here

so i've mentioned before that i have alarms going off at all times of the day to remind me to take my medication AND that i haven't a clue if/how all the meds i'm on actually do anything for me.

well...yesterday i found out.

that morning at 8, my alarm went off.  I was in the middle of making breakfast, so instead of walking to the alarm to turn it off and take the pills and then walk back to making breakfast, i just let the alarm keep going and the plan was that when i sit down to eat, turn it off, take the pills and eat.  well i turned it off and began to eat.

As the day went on, i really found that things were a little off.  I was jerkier than normal (more puppet like if u will) and the whole walking thing was actually getting on my nerves and pissin me off.  I normally work out, with a personal trainer, on Thursdays and i was actually thinking of canceling the session (a valid reason to cancel - WOOHOO) because i didn't know that i could make it.  Anyhoo, i kept on trucking on as i do...

A little later i was talking to a friend and he was asking me about the medication and how things were going, etc etc and that is when it dawned on me that i didn't take my 8am meds!  it was 1:53!!!  no wonder i was all out of sorts- WOW!  those actually do something...an hour later, i got up for something and i was normal (or at least as normal as i can be).

good to know that i'm not taking them for nothing!

Port Saga Continues...

So my personal doctor, Dr. L or G3, and his family were here last week.  He and his wife are both doctors, so I was telling them the port story.  She thought that it was a good idea from the beginning, he had to be sold - when he found out that i would be using it monthly AND they will be drawing blood each time, he got on board. 

Of course, like all things medical, there are risks.

1. it's a surgical procedure to insert it
2. infection!!

They both said that the biggest risk is infection - a nurse doesn't wash their hands and handles it could lead to that.

of course, it's just 1 more thing about which i'll have to deal with the insurance company...not really looking forward to that - I'll need to decide if i want to do it this year or next year.  I already have to have an MRI done later this month to ensure that I am not at risk for the brain infection (side effect of the monthly Tysabri infusions) so who knows what more they'll actually pay for!

ARGH!!!  Being sick truly does SUCK ASS!

U Can't Make this Shit Up

So G stayed with me in the infusion room this time around.  I think i mentioned before that the room is very comfy - recliners, pillows, blankets - u couldn't ask for more.  So we set up shop next to each other to await the afternoon's activities.  Well, by the 4th or 5th time of trying to get my blood, the nurse and I had a small conversation that went like this:

Nurse: "ur veins are really tiny...anyone tell u about port?"

Me (so excited): "Port?  that will help?  really?" - in my mind, I was already thinking, hehhehheh, i will need to start taking these days completely off and i'll drink a glass (or 2) of Port before coming here, so that the blood will flow,  the veins will bulge and getting into them will be a breeze - a valid excuse to knock back a few?

G, next to me, hearing my excitement and putting 2 and 2 together says, "Not Port, jackass!" "A port!!!"  I came crashing back to earth...Apparently the nurse had asked me about "a port" a few minutes before, but i didn't hear and someone else had walked up and distracted her so the conversation never continued.  G heard when she'd asked the 1st time so realized that it was some kinda apparatus or something that she was talking about.

Anyway, in a nutshell, a port is a small device that is inserted and remains right beneath the skin.  A catheter connects the port to a vein and blood can be drawn from/drugs administered in the device as needed, with less discomfort for the patient than a typical "needle stick".  In other words, it's a "sure thing" and would be used every time i go for an infusion.  No more, "guess how many times i'll be stuck today" or "veins not wanting to "come out and play"" or any of that usual bullshit.












The nurses suggest that i think about it because my veins give so much trouble. Food for thought...

Infusion Time "Fun"

Anyone want to take a wild guess as to how many times i was stuck last Friday?

anyhoo...so i went on Friday for my 6th (time flies when u're having fun) infusion.   The head nurse (andrea) walks over and starts trying to get my vein to corporate (applying heat, tapping it, flicking it).  It looks like it's going to be a good day but then she goes in and... has no luck....the vein is just not on this infusion business and has better things to do i s'pose.  She calls over someone else...she nails it!  woohoo!!  we are on a roll here.  This time because it's my 6th one, they need 3 vials of blood for whatever blood work they have to do.  The chick says that she'll wait to get blood after i've gotten the medication. (skip ahead 2 hrs)

Andrea walks over and says, "lets get some blood and send u on ur way."  She takes the syringe and whatever other apparatus they use and inserts it into the IV, pulls back on the plunger and - NOTHING!!  She thinks that the vein that we're in is kinda tiny, so she'll have to go in somewhere else. (skip ahead 45 mins)

By this time, both my wrists and forearms are sore and 2 other nurses have seen me.  Remember i said that they needed 3 vials of blood?  they got 3/4 vial!!!!  My blood just didn't feel like flowing.  At the end of it all, Andrea said that they will just take it and do whatever testing they could with what they had.  I was so happy to hear her say that because i really wasn't in the mood to try yet another time.

so...at the end of it all, how many times did i actually get stuck?  7!!  twice for the medication and 5x for the 3/4 vial of blood - sooooo NOT what I signed up for!

My Trini Atlanta Family

Anyone from Trinidad will tell u that there are Trinis EVERYWHERE.  U go to the Mars, it go have some (there will be a) Trini limin,drinkin and fetein with the aliens!  So i came to Atlanta and eventually fell in with the Trinis here - of course.  They were an older crowd (adults!) so all of us - they referred to us as "the students" or the "kids" - liked to go to their homes, eat good Trini food (u know a student's staple is Ramen Noodles, not to mention the culture shock of dealing with various new dishes in a new country) , sleep in a nice comfortable bed (not the dorm room lumpy single bed) and enjoy that "home away from home" feeling.  It was also good to get away and lime with people who "talk like me" and don't ask if we "swing from trees" in Trinidad - it happened, I swear.

So I've known some of these people for a long long time.  In true Trini style, there are a few "aunties" and "uncles" and some of them know me well enuf to have seen me "grow up".  Anyhoo, i was diagnosed in 2005 and as I'e mentioned before, if you looked at me, u would never know that there was anything wrong.  Anyhoo, as time went on, it came out that i have MS...well u know, not much is known about MS, so i'm not sure if it really sank in. 

Last month, 1 of the Trini associations organised a bus ride to a nearby casino.  At the time i'd already gotten the cane, so we both boarded the bus.  I found out afterwards that seeing me walking with a cane was a blow to alot of them - it actually brought a few to tears.  I ran into 1 couple last week Friday and regardless of how much i told them that i don't want them to cry for me because i was okay, the husband eventually told me to move away because seeing me again was hard for him.

It's really touching and i can understand how it can be shocking to some - esp if they haven't seen me in a while, but i really don't want anyone to cry for me - at least not now :-) - because even tho some things have changed, i really am okay!

RRMS vs SPMS

Those are 2 different types of MS: 

• RRMS - Relapsing Remitting Multiple Sclerosis
• SPMS - Secondary Progressive Multiple Sclerosis

Most people at onset are diagnosed with RRMS.  This form manifests itself by the patient experiencing "flare ups" that last a few months and then eventually everything just goes back to normal (like nothing ever happened) - case in point, in 2007, 2! years after being diagnosed, for 7 months of the year, i had double vision and a feeling of being high and no motor skills (amongst other things) - wasn't cool at all and then jsut as quickly as it started it stopped and things went back to normal.  If u ask me, that really was the only MAJOR flare up i ever had.  There hasn't been another time when things were crazy for any length of time and then nothing.  Now, don't get me wrong, my feet/arms tingle (like that feeling just before a limb goes to sleep) off and on and a few other things, but nothing major - at least in my book.

Most people diagnosed with RRMS eventually develop SPMS.  This is charachterized by a progressive worsening of symptoms - which may or may not be accompanied by flare-ups.  I have a feeling (what with my medical degree and all!) that i have developed SPMS.  I have had no flare-ups since my first one - i lie!  i had 2...2 years prior to my being diagnosed, my vision did something odd and no one could figure it out.  that lasted some months as well and then things went back to normal.  My walking has gotten progressively worse over time and again - no flare ups!  I used to hope that the walking was a flare up but I've pretty much given up on that now.

I have a routine visit with my neuro next month and 1 of the questions for him will be whether or not i've developed SPMS (great! just *&^^* great!!!).

A Few Pics...

so how funny it was that there was another person at 1 of the parties we went to who had the same cane as I...pictures lil blurry but...

limin on the truck...

the chicks in all their glory... 

Tropical "Strain"

I am convinced that my strain of MS is tropical and hates the cold weather (0r maybe just Atlanta)!  Went down to Miami this past weekend and not that i didn't have issues, but i certainly didn't struggle as much as i do here sometimes.  I'm going to have to move to FL...it's already been cold a few mornings here - it's time for me to go into hibernation.

i actually used the cane everywhere i carried it - i'm getting used to it now.  Took it to all the fetes, even took it on the road.  Of course, i can no longer play mas, but K is a good friend of the DJ for one of the bands and arranged for me to be on the (music) truck.  I lasted the entire day on the road - cane and all - and had a blast!

not the truck i was on, but u get the picture

I was actually having 2nd thoughts about going on the road, but i'm really happy that i did, even though i got ah lil emotional when the band crossed the stage.  Not being able to play mas and really enjoy myself in a carnival fete are 2 of the things that REALLY upset me. 

• We go to a fete and i have to siddong (sit down) most of the time - that SUCKS!
• We play in a band and i have to ride on the truck and not be on the road - that SUCKS ASS!

but!  I will look on the bright side of things - i can go and enjoy myself in my own way, besides which i don't think that any of my friends will allow me to stay home!

Ramblings...Post about Nothing

Most times when I go for my infusion, i see the same people.  That only makes sense since it's supposed to be done every 4 weeks; so we are all on the same schedule.  Every so often tho, I will see a new person or 2.  So this last time (once again only stuck once - WOOHOO!) there were a few people who actually walked/looked like they were suffering from the same symptoms (y do i ALWYAS have to use spell check with this word) as me.  They say that misery loves company, and i am really beginning to totally understand how true that really is.  of course, on the flip side, there was also a woman in a chair...oye!  Now this woman had been there from 11-2:30 because they were "trying to get a good vein".  They eventually had to send her home to come back some other time (didn't macco (be nosy) well enuf to know when) because after 8tries (and letting her rest in between) they gave up...WTF!!!  hopefully i'll never have that experience.

i was looking at my feet the other day and it dawned on me that the veins there look perfect (to my trained by the internet eye).  Don't know if i'll ever muster the strength to go there (is that normal) but they appear to be bigger and more prominent than those in my arms/wrists.

The nurse who'd spoken to me about using a cane at the infusion center was so very excited and proud of me because i had actually gotten 1.  She noticed it right away and told me that i'd made a good choice and i won't regret it.

True Story

Saturday i had to take my car in to Honda.  I got there and the Honda man opened my door.  I told him my usual, "I'll take a moment" because in addition to just taking my time to get out the car, I was juggling a book, a cup of coffee, the cane, my phone and my handbag.

He said, "no problem...take ur time.  Would u like me to hold something for u?"...i said, "oh yes, thank u"...

 and handed him the cane!!

Not Sold

So...I'm still not sold on this cane.  I'm giving it a chance, but...

yesterday I had to pick up my car from the repair shop - how the fcuk do u see a parked car that is sitting in a practically empty parking lot and then reverse into it?????  that is just beyond my realm of imagination...but as usual i digress - so i went to get the car, took the cane and what did i do?  held it in my hand instead of actually using it!  HELLO!  I'm a loser, yes i know.

• I get that it will help with my balance - i think.  What if i have it in my right hand and i start to sway to my left?  what then?
• I'm not sure that it will help me when i'm stiff - can it really help me then?
• what about when my knees decide to lock up - to me that is just more drama

I'm still being positive...I am not going to write it off.  I just have to get into the habit of picking it up and actually using it i s'pose and we'll see what happens.

It's a nice sleek one...it's not fancy; didnt want to spend too much money on it until i know it'll actually be worth it, but it's cool enuf that i won't mind walking around with it. 

In the Mail

The cane is in the mail...

not sure if to be excited, feel depressed or just be indifferent

Routines

Part of managing my MS is all about routines - and I suspect that goes for all chronic diseases.  Altering old ones, creating new ones and even *gasp* deleting some old ones...

• Eating breakfast - won't bore u with details but I've had to change my morning routine before heading downstairs to work
• Getting ready to go somewhere - again, no details necessary, but i've had to alter my "getting ready" routine
• Setting alarms to take meds - everyone always knows when it's 5pm and 9pm on a weekend now
• Waking up at 1 am to take a pill - every morning, the alarm goes off; it's gotten to a point that sometimes if I'm asleep before that, i actually wake up without the alarm.  Luckily they're small enuf that i don't take them with water - 1 time i swore that i'd taken them; i felt them go down and the next morning i woke up and they were in the container smiling up at me
• Partying on the sidelines - i doh fete like i used to (jes a whole lotta limin) but when i do,  i usually shy away from the wine and enjoy the music more than anything (love to hear music LOUD) and live vicariously thru everyone else
• Walking around with a chair - never know where we might end up and there is no seating for me 
• For the first 5 years, i had to figure out the best time to take my daily shot so that i wouldn't forget altho up till the time i stopped, i still kept forgetting...good thing i have to go in for the infusion

it's really about knowing my limitations/what I can and cannot do, altering some things to not put myself at risk...and if I try to do something that I know I shouldn't, being prepared to deal with any consequences.

Taking the Plunge

allright...i give up!  I'm not going to fight it anymore...I'm throwing in the towel, biting the bullet - all of those phrases...

i'm 99.9999% sure that I'll get the cane. I think i need to practise for sure because even tho i'm that close to getting it, i'm not that close to being convinced that i'll be able to maneuver IT and ME all at once.

Using 1 will be better than falling more regularly than i do now and hurting myself.

D, I'll work on the pimp cup (just for u) - can't make any promises re: the cadillac :-)...i know u wish u were here to see for urself!

Cane...Food for Thought

So when i went for my infusion, 1 of the nurses saw me and asked me where was my cane.  She seemed to remember me coming in with a cane before.  When i told her that I didn't use one, she said that maybe i should look into it because it would help me keep my balance.  what's "funny" is that i'd written about my thoughts of using one the day before and then i go in and she's telling me that it will help me.  I'm still not convinced - i'm still a little afraid.  I'm thinking it's one more thing that I'll have to "keep track of" when i'm walking and that could end in disaster.  maybe it's also my pride?  maybe it's that i'm scared because again - the progression - canes might lead to other walking aides which could eventually lead to a permanent chair.  Of course there's always the bright side...i could get a "cool" cane; maybe different colours and styles so that i have options depending on where i'm going...

i swear it's getting harder and harder to keep my positive attitude about this disease. 

The New Drug

Oye!

Not sure if i have figured out the last pill as yet. 

• Sometimes it makes me sleepy (altho not as much as the first time) other times - nothing

• the past 2 days, it's been making me dizzy (only for a few minutes), before yesterday - nothing

• Once or twice, it made me feel kinda sick (again only for a few minutes) - but that's only been once or twice

Sheeeiit - i just don't know.  As usual, is it helping?  who the *^*!! knows.  i thought it was at first; now? not so much.  i was supposed to take 1/2 a tablet for a week (started 2 weeks ago) and then increase to a whole one.  Needless to say i'm still taking 1/2 because I'm a little afraid of what an entire 1 would do..more to come i suppose...

Today's Post Brought To U By The Number "1"

well wouldn't u know it...

Friday was my infusion (time really does fly) and guess how many times i got stuck?  ONE!!!!  she did it in 1 go...who woulda THUNK it!  I certainly didn't think it was possible after all my experiences so far.  AND, i think i've also discovered the most comfortable position too.  I think i've mentioned before, i would have never thought in a million years that i would entertain the top of my wrist (that nice bony part) - but there is the most comfortable - i can bend, move my hand freely without any issues.  I sit there for about 2 - 2.5 hrs easily so it's good to be able to move my arm comfortably.

Still don't know what, if anything, these needle pricks are doing anything for me - but hey, i guess i'll keep enduring them for now.

Angst

I am beginning to believe that I experience some anxiety when i need to be out and about sometimes.  I went out Friday nite and at times i was unbelievably unsteady; had to hold on to people and everything but as soon as I got home - no problems.  it's a pain in my ass....but...

On the flip side tho, i was out and about Saturday by myself and didn't have any problems really.  sometimes, i wonder if a cane will help me any, but then i have a vision of me and the cane catspraddling (falling in an unladylike manner) down the sidewalk; something that i'd rather not have to ever live thru *gasp*! 

I really don't think that a cane will help me any because i'll just be unsteady with it too, so for now, i will just continue to hold on to somebody else when i can and walk ever so slowly/take my time so as to not keel over when i can't.

the Odds

What are the odds that "2!" of your family members have MS???  I was talking to a coworker yesterday and somehow my MS came up and she mentioned that 2 of her family members have it - not from the same side (1 is an in-law) but still!

So as we continued talking - same conversation as others really - the diagnosis, treatments and how to deal etc, I mentioned to her that at some point, i realized that it really is not the worst thing in the world to happen (not the best either if u ask me) and i just had to deal with it.  I also told her how my mother rationalizes it and she absolutely loved that outlook and thought it made absolute sense.

I didn't buy it so i can't return it!

Oh well...what u gonna do!

...BUT

AARRRRGGGGHHHHH!!!!

I hate Multiple Sclerosis! 

There!  I've said it loud and proud!!  so i went to my neuro on Tuesday and what did he tell me?  more of the same bullshit "Tysabri needs at least 6 months before we start seeing any effects", "we have to give it time".  He also said that treating the MS is about trying to find that balance - finding the right drugs to help but not so much that the side effects have u going out of ur mind, exercising but not so much that u get too hot and start to overheat and feel terrible, eating well but not so much that you end up depriving ur body of essential nutrients that it needs - WTF!??!  is it really all about trial and error???  ARGH!!!!

Anyhoo, so on that note, i've added yet another small white pill to my collection.  this one is even more powerful than the others because it's 4mg and i only am taking 1/2 - and again, i was the drowsiest i've ever been in my life after i took the first one.  The difference with this drowsiness was that it only lasted about 3 hrs not the entire day like the last time - go figure.  I hope that this passes soon because it's a drowsy, drunken feeling that I'd rather not experience again (the last time i was only drowsy the 1st day).  This one is also for Spasticity which is what he suspects is causing my walking problems these days.  Good news/bad news.  Hopefully I won't be as stiff as I have been but not so much that my legs feel like jelly!  Shit, we all know what that means - more falling for me - WHOOHOO!!!

I hate having MS!  I've said it again - loud and proud.  what i hate about it the most is all the unknowns:

• Don't know what causes it
• Don't know what cures it
• Don't know y u have it
• Don't know what course it will take/how it will affect you
• Don't know how long you will experience what you are going thru right now   

the list can go on...and on and on.

Allright, I'm off my soapbox now :-)

wow...

More drugs...things surely have changed eh.  Got an email today that speaks to a new drug that could get FDA approval by December 2010.  wow and this one is oral!  Will i switch?  nah...If Tysabri will still be the most aggressive on the market, I'll give it a chance.  Now had I still been taking my "daily" shot, then HELL YEAH - no questions asked, i would have switched.  Tysabri is monthly; I can handle it - even tho my veins like to play Hde & Seek!

I'm still unsure of what Tysabri might be doing for me...Ayeyayaye!  I'm really sick and tired of this disease and all the kiss meh ass unknowns.  I swear I'm on a downhill spiral these days....they say "give it time", "u won't see any effects from the Tysabri for 6 months" blah blah blah.  It's hard to do that, but i'll do it (what choice do I really have).  I go to the MS Center this afternoon for a follow up - will see what my doctor says, but probably more of the same.

People...

People can be nice!

The other day i went to FedEx.  It was a kinda rough day in the sense that I was ah lil unstable and shaky for most of the day.  I think i know why, but that's a story for another day.  Anyhoo, so I park in the spot right outside the store and sloooowwwwwllllly make my way in.  It was a glass door so the FedEx woman could see that something just wasn't quite right.  Anyhoo, i get in there and I have no idea what the hell I'm doing.  (those close to me know that i do EVERYTHING online - i haven't a clue how to act/what to do in a post office/fedex place/ups; any of those kinda stores - the other day a postal worker told me that it's because of people like me the post office is going out of business - but as usual, i digress).  Anyway, so she actually brought me the forms that i had to fill out instead of making me walk across the store to collect them.  I was extremely grateful.

I left the store and had to go meet a friend for dinner.  As i pulled up in that parking lot, i noticed that i had a message from an unknown number (those who know me well, know that i NEVER check messages - unless it's from a number i don't recognise - could be Ed McMann (sp?) saying that i win the millions).  Well, it was the FedEx woman, app. I'd left my work ID behind...so I went back to FedEx, but this time I had to park further away.  well...wha yuh go do!  so i get out the car and start making my way to the store...she saw me thru the glass door and motioned to me to stay put and she brought it out to me.  I swear - i really could have kissed her :-)  I thanked her for calling and esp for bringing the ID out and she looked at me and said, "i hope u'll get better soon".  Of course, I gave the obligatory "i'll be fine - thanks" response but in my head i'm thinking...I can only hope!

My "Condition"

i hate when people automatically assume that because i say i can't do something or I won't that it's because "of your condition".  i was talking to my aunt last nite and we were talking about long distance driving.  I said that the only place i drive to is Charlotte because it's only 3 1/2 hrs away and even that is a stretch.  she said, "yes yes...in ur condition blah blah blah".  she's not the first one with whom I've had this exact conversation to say this.  The other person kept insisting that i shouldn't do it blah blah blah...the truth is that i don't drive anywhere because i can't stand to sit in a car for that length of time!  I too old for that shit!!  back in the day, we would jump in a car and drive to NY and Miami at the drop of a hat....u cyah pay me enuf to do that crap NO MORE...everywhere i go, i fly!

Now don't get me wrong.  I know that there are some things that i shouldn't/wouldn't do "in my condition" - u won't hear of me signing up for a 10K anytime soon - but i know what those are and i know my limitations.  There was a time ago when i said "to hell with it; I'm doing it" but those days are long gone.  My "superhero" days are over!

To Tell or NOT To Tell...

I've said before that i really believe that my MS is temperamental.  I swear!  If I'm at home alone or around people i'm comfortable with - no problems (for the most part)...as soon as i'm out and about, around strangers - all hell breaks loose!  I stiffen up, i'm all shaky, unstable...ayeyayaye!  shit is never nice and simple...

Monday nite, I went to dinner...wobbled into the restaurant and as always, I feel like i have to explain when I'm following the host to a table (esp if I'm by myself) becuz i move so slowly, i tell the guy, I'm going to get there; it'll take me a minute, but i'll get there.  Of course, he sees me somewhat shaky and asks if I'm okay.  Anytime I'm asked that question, I say yes...no need to get into any long story.  But then he says, looks like there's something wrong, did u hurt ur leg?  Crap!  did he have to ask more questions?  really?  This is a place that I frequent - ALOT - so I felt the need to tell him the truth, "i have MS so sometimes i stiffen up when I walk"...poor guy.  I think he got confused,  mumbled under his breath "so sorry" and got the hell out of dodge. 

It's not that i want to make anyone uncomfortable or anything, but he asked me more questions - he should have just accepted my first answer and moved the hell on.

Last nite, I went to a friends' house and ran into someone i know who hasn't seen me in a while (we don't keep in touch either).  I went into the office yesterday so i did more walking than i should have so by last nite, i was in a state....the conversations went like this:

him:  U limping...what's up?  u okay?

me: wait a minute, u don't know?  I have MS so sometimes walking is a problem

him: Nah!  Yuh lie!  i doh believe u...u joking

and he walked away...i heard later that he went to confirm with G and SD that i was telling the truth.  He honestly didn't believe me.  Again, I don't set out to make people feel uncomfortable or anything but sometimes they just don't know how to react and sometimes the truth just isn't necessary either.

#3

I'm a PRO at these infusions now.  #3 was last week Friday - everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i'm a problem child, so she is the only one who takes care of me) still hasn't figured my veins out...but this time i only had to get stuck twice as opposed to 3x the last time.  It's amazing the places that they go into as well - i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can't say if the medication is working or even doing anything...but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can't blame the Tysabri because my iron started getting low before i started on it.  I haven't experienced any of the classic reasons for iron deficiency - major blood loss being the most significant - and there really isn't any explanation for it, but hey!  i'm dealing with it and it's not such a major issue to lose any sleep over.

:-) More Warm Fuzzies :-)

G has not been here for the past week and a half.  I have a weekly appointment that she normally drives me to because I'm not sure if I can drive home when i leave it yet.  So i had to find a driver yesterday.  I asked SD in the morning and he was able to do it.  I'll be honest - i hated asking him because i think i've said before, i don't like having to depend on nor do i want to be a bother to anyone.  I plan to drive home the next time I go so that I can get a feel for if I can go by myself in the future. 

Well i mentioned to SD and naturally i get bouff (chastised).  He told me to "don't be stupid!", "stop acting up!", "u should depend on us just like we depend on u" and "stop being so sensitive!".  I have to admit, it made me smile.  It DOES feel good to know that I have friends on whom i can depend at any given time and I am really not a bother.  I can't help it tho - i really hate to have to ask anyone for favours because I like to be able to go where i want when i want but I know that in my situation, that cannot always be the case.  

It's good to know that my friends are there for me IF/WHEN i need them and we're all going thru this together.

Warm Fuzzies

It always gives me a "warm fuzzy" feeling when i am complimented on this blog.  Never in a million years would i have thought that:

1. it would be easy
2. i wouldn't mind people reading - i was skeptical at first because i thought that it would need to be perfect - HAH!
3. people would actually enjoy it

Someone asked me once if it will ever evolve into something else where i just talk about other shit going on and the answer is no! (kudos to those who do) I'm not that guy...so it won't ever evolve into that altho i will say that i don't always have something to talk about related to my MS story.

Some people have told me that it makes them laugh...and then in the same breath, they apologise (i guess for laughing).  But i always say to those folk, it's okay to laugh.  Sometimes all I can do is laugh.  Laughter is  the best way for me to handle all the shit that happens sometimes - if I don't laugh i will sit here and bawl down the place.  So it's good to laugh - sometimes I laugh when i re-read some posts.  I know that they are not laughing at the fact that i have MS, it's just how i've written the post and i want u to laugh NOT sit and feel sorry for me.

So read up, laugh - laugh hard (I do...sometimes i think i have the loudest laugh of anyone i know) and ENJOY!

1 Step Closer?

More news about research, treatment etc:

FDA Agrees to Fast Track Status for Drug Being Tested for MS

It's yet another disease modifying drug to slow down progression - still no cure, but research has moved in leaps and bounds since i was first diagnosed.  There were only 4 drugs available to me at the time, soon patients will be able to look at scorn on specific drugs because there will be so many on the market.

In other news...now, i'm anaemic!  not sure when that happened or why!  Oye!!!  the good news is that i went to give blood the other day (my all time favorite thing to do) and they gave me my walking papers and refused my blood.

WOOHOO!!  boy was i happy...being stuck with that needle is NOT my idea of fun.  It's [ ] <--- that wide; i swear! 

there's always a silver lining somewhere... :-)

HAHA!!

I saw this picture while i was looking for something else and I just couldn't resist!  This is how i feel too...actually it SUCKS ASS!!!!!

Awareness

What is it about when u know about somehing u hear more and more about it?  For instance, you decide to buy a G35 and all of a sudden those are the only cars on the road (btw...i really think Stax4 is going to be a G35 coupe, but that's a story for another day).  I was diagnosed in 2005 - none of my friends knew about MS, none of my family (cept maybe the doctors and nurses amongst us) knew about it.  i was the pioneer - wanted to be first and foremost - kinda like when i got my ticket...I was in front winning the race!

Now, every 2 minutes i look around, either someone else i know is being diagnosed or someone i know knows someone else.  It's become the "in" thing.  It's just kinda amazing to me how many people i've heard of who have Multiple Sclerosis.  I guess in the grand scheme of things the doctors are getting smarter afterall and a diagnosis is no longer taking years and years to make.

Makes you wonder...since so much progress has been made with diagnoses, maybe there might actually be hope for their figuring out the root cause and a cure might not be too far behind.  Go figure!

MiSdiagnosis

I've wondered in the past if the doctors made a mistake and i really don't have MS.  Of course, after I have those thoughts, i think well there has GOT to be some kinda explanation for the things that have been happening.  I can probably explain away the falls as my being a klutz, but everything else?  not so much.  Also, the only symptom (Y can't i spell this word on the 1st try???) that I experience is walking problems (i'm not complaining, really I'm not but it always makes me wonder).

People have been asking me recently if the new meds are working.  I knew without a doubt that the Ampyra made a tremendous difference - no question.  Have i seen a difference now that I'm also taking Tysabri?  I really can't say for sure.  I mentioned before that the Tysabri at first appeared to be negating what the Ampyra did.  That wasn't an EXACT statement, in that before taking the Ampyra, my feet/ankles (that region) were very weak...started taking the Ampyra and that was improved and now, I no longer drag my feet but after I started taking Tysabri and i stay upright for too long, my knees start locking up...WTF??!?!?  Is that the MS or something else?  Is it that the muscles that normally keep that from happening are weak?  what the fcuk is it?  Now, i will admit that it is not as bad as the first weekend after the 1st Tysabri infusion but still...

so to go along with those thoughts of a misdiagnosis, I also wonder if I'm taking all these meds for nothing.  Are they making a difference?  Shit - hell if I know! i guess...I hope...but i really can't bet my life on it! 

Question

Does anyone out there know FOR SURE if i can write off personal training as a medical expense if I have a prescription/note from my doctor?  NOT physical therapy, but personal training.

Oops!

I made a mistake with 1 of the small white pills!  I'm supposed to take Baclofen and Ampyra @ 9am, Baclofen @ 5 and Ampyra @ 9 pm.  Well last week sometime, my Outlook reminder went off at 5 and I was distracted and popped both the Baclofen and Ampyra...I remember that just as i swallowed them, i said, "Oh shit!"

so i looked up a hotline number online, dialed it and it went straight into a poison center.  I told the chick who answered what happened and she looked up the drug and whatever else and told me, "it's a very strong drug and u took it 4 hours earlier, so just hold on lemme check with the toxicologist on staff"... she came back and the following was our conversation

Chick: Are u alone?

Me: Yes

Chick: Is there someone u can call to come stay with u for a while?

Me: Yes

Chick: Because the drug is very strong and so u MAY experience an altered mental state!

Oh goody!  Just what i want to hear...she told me that i could feel sick, dizzy, nauseau, confused among other things and i should call 911 if things get really bad.  She took my number and said that she'd call me in 2 hours to see how things were.  She did and luckily all was well - I had no reaction of ANY sort...Of course i didn't take it again at 9...just started back at 9 next morning.

HAPPY TIMES!

MS in the News - Again!

so we all know that there is no cure for MS - heck I would bet my last dollar that the researchers are too confused to figure out what could possibly cure; hell they can't even figure out the cause.

There are drugs on the market called disease modifying therapies that slow down the progression of the disease.  I was on the daily shot, now I'm doing the monthly infusion which i am loving (from the frequency aspect); no traveling with the syringes, no walking with them when i spend the nite out, just no worries about taking the bloody thing period!  The Ampyra that i'm taking is different; it's not in that category.  It's a drug that was developed that is specifically for the walking disability.  It does nothing to slow down the progression of the disease; it just helps patients walk faster and feel stronger overall.

Those disease modifying therapies have ALL been shots of some sort.  Monthly, daily, weekly, every other day - all shots.  Well there has been a new drug developed that the FDA is expected to approve in September that, finally, is taken orally!  This is great news for all involved.  Read more...

Will i switch?  Nah...don't think so...the Tysabri will still be the most aggressive and possibly best one on the market, so i'll give it a chance to work...besides which that will be one more  (possibly small white pill) to add to my handy dandy organizer and make me look more like a dealer.

In other news...big match up today - Germany vs Spain.  Germany has been playing like a well oiled machine, I hope they mash up Spain the way they did Argentina.  I'm gunning for a Netherlands/Germany final.

Things Went Well

Everything went well on Friday; nothing to report except that apparently i really do have tiny, rolling veins.  STEUPS!!  This time, I was stuck twice, in 2 different places, and then stuck AGAIN because they couldn't get blood from that vein...go figure!  I was able to enjoy the weekend altho it started off shaky with that ass raping that Germany gave Argentina in the World Cup match on Saturday morning. 

I've never seen another MS patient suffering like me with walking troubles.  Any time i go to see my doctor at the MS Center, other patients are either walking normally or at the other extreme and are in a chair/using a walker etc.  I've never actually seen someone walking slow or dragging their feet or anything like i do - until last week Friday.  The chick was much worse than I ever was; it appeared that her legs were totally stiff and unbendable.  She didn't use any walking aide as far as i can tell, but when she was leaving the infusion room for good, she held on to someone to leave.  I AM LUCKY!  I don't think i can say it enough...I can't imagine what she must go thru regularly - of course, i don't know if she walks like that all the time or if she was having a bad day - but imagine walking (or trying to at least) and ur legs just don't corporate with u and ur knees refuse to bend!  WTF???

I've said it before, I'll say it again, MS really is a shitty ass disease!

Infusion #2

Geez!  Has it been 4 weeks already? 

The 2nd infusion is tomorrow.  I think i will have to ask for someone other than the chick from last time because I cannot live thru another "catch me if u can vein" incident.  While i didn't have any side effects to the medication, I really couldn't do much that weekend because of reverting to how i was before even taking the Ampyra.  That has since gotten better...but this weekend G2 and clan will be here and it will NOT be acceptable if i can't do much, esp since it's July 4th and there's a shitload of limin to do.