2010

HAPPY NEW YEAR!!!!

Here's hoping that u all have a safe and wonderful new year.

December 23rd

yesterday was somewhat rough for me, but let's face it I had to get my shopping done.  I started the day before, but as soon as I walked in the store i realized that i wasn't in the mood to shop.  I'm not a shopaholic - nor do i really enjoy shopping, per se...but if i go into my favorite store, i can spend hours if they have anything of interest.  At any rate, I didn't know if i wasn't in the mood because of the trouble i have walking or if i just didn't want to shop.  Anyhoo, yesterday i didn't have a choice - it was the last day that i could go shopping.

I dropped "G" to work and then off i went.  I actually started in my favorite store, so maybe i got a little carried away.  By the time i was done, I had practically given up on doing anything more when i realized that 2 other stores were just across from my fave, so i decided to tackle them too.  Well, by the time i left there, I had to rest a little before i started my trek to the car.  What would have taken me 5 mins, took close to 20...boy was i glad that i had the handicapped decal because my car was right outside the doors.  I had somewhere else to go, but i figured that i would go home first, stay for a few hours and then head back out.  Unfortunately that didn't help much - for a very very brief moment, i got a little depressed, but just as quickly snapped out of it...long story short, by the time i was done and came home, I could barely stand, let alone walk!  At least i was at home tho...

There is good news!!!  I got all my shopping done!  I do have 1 more little thing, but I can pick that up today in the grocery or something.

Here's hoping that you all have a safe and wonderful Christmas with ur loved ones - I know that i will ;-)

Vacation - WOOHOO!!!!

Yesterday was my last day of work for the year....I'm extatic!  Time to start the season for real... 

The sorrel has been made, the punch ah creme done and the rum punch (what's left of it) is chillin in the fridge.  Gifts are being wrapped and put under the tree as I type...I think it's Christmas on TP Drive!

Alternative "treatment"

One day, i went to the mall by myself.  As i was walking/struggling out (i was actually fed up of being in there and was starting to feel a little sorry for myself - i told u that i do have bad days sometimes), one of the security officers ZOOMED past me in a segway.   U know that she pissed me off; I just wanted to bitch slap her down off it.  That got me to thinking (and I've actually had conversation with others) about my using one to get around.  But...would i be able to keep my balance on the damn thing?  U do have to stand on it...will it really help me?  besides which, will the insurance company even consider paying for even 1 wheel of it? hmmm...food for thought...

I've told people about my condition and they've suggested Tai Chi, Yoga, Acupuncture, Physical Therapy...the list goes on...even changing my diet.  The person who told me about the dietary changes sent me an email and the first thing on the list was pork - NOT happening!!!...i think that there are very few people on this earth who enjoy the PIG more than me!  My doctor will have to sit me down and say, "Stacey, you will die tomorrow unless u stop eating pork" for me to give it some serious thought ;-) i digress...

I scanned the rest of the list and there were a few things that either i cut out totally or have started to cut down; sugars, dairy to name a few...will that actually make a difference?  who knows, but i have nothing to lose.  I actually read an article the other day where an MS patient claimed to be cured after changing her diet...hmmmm; I'm not a believer.  Modern science has told us that there is no cure so u have to wonder was she really cured or is she in remission? 

Old Years (new year's eve)

so it's interesting...almost everyday i am made aware of a phrase/saying that is something only a Trini will understand.  I never realized that no-one else says "ole years"; i knew that Americans don't, but i thought it was a Caribbean thing...come to find out just this weekend gone that maybe it's a Trini thing?

Anyhoo, so a friend of mine is having a big lime (get together/party/any social gathering) for old years.  He lives in Raleigh and "D" is coming down to ATL to drive up to NC.  All of us were in Atlanta at some point years ago (Spelman and Morehouse days) and even tho we don't see each other very often; we are still in touch and this lime promises to be a shitload of good/happy times. Well I've known about it for some time and then decided that i will go south instead of north for the occasion.  Suffice it to say that "D" is not happy about the fact that I'm not going (most probably because now he will have to drive up by himself).  He was cursing me out about it last week and it occurred to me that subconciously i'd prefer to in a social setting only if at least 1 of my "inner circle" is around.  Maybe it's because I know that if something were to go wrong, they would have my back.  Now don't get me wrong,  "D" is part of the "inner circle" but as i mentioned before, he did allow me to fall TWICE in a party :-)

It's not that people who will be at the lime don't know that i have MS (i think), it's just that they don't know what I've been experiencing all along and instead of having to explain myself, i just don't want to put myself in what could turn out to be a difficult situation.  Maybe this is not the best way to handle and maybe I will "grow" out of it, but i guess until then, it is what it is.

on a side not, going south also means that i will be in warmer temperatures, let's not forget that most important little tidbit!

Nothing bout the Disease

So...the christmas tree went up last nite.  I wouldn't say that i wasn't feelin Christmas"y" but there is something to be said for putting up the tree, untangling the lights and trying to sidestep the broken decorations while "Coochie, coochie, coochie la la", Baron and Scrunter etc blasting in the background. 

Next on the list - sorrel, ponche a creme (there's a 1st time for everything) and rum punch.  All we need are some gifts under the tree and Santa can come and buss ah lime.

This picture is part of the tree

Insurance

Okay...so my mother is an Executive Agent at Guardian Life BUT I really do think that insurance is 1 of the BIGGEST rip offs that any normal person has to deal with - and I've told her as such.  Now...don't get me wrong, I'm glad that i have it but oye! the insurance companies don't always make it easy for you. 

Anyhoo,  at the end of the 2007, i got a statement  of savings from the pharmacy i use; I call them every month to schedule a shipment of my "beloved" shots.  I won't get into the cost of the MRI/Lumbar Puncture etc, but my medication cost upward of $16K (and that was 2 years ago).  My cost; roughly $300.  Actually, at the beginning of every year, i normally hold my breath around the delivery of the 1st shipment, because I fear that my monthly cost will increase.  Boy am I glad that i have the insurance!!!  What would my fate have been if i didn't?  I know someone who doesn't take any shots - i applaud her, but as much as i "look forward to taking them every day",  I'm not brave enough to find out what would/could happen if i didn't.

Heat + MS=Disaster

I'll tell anyone up here without skipping a beat that "I'm an island girl".  I practically grew up on the equator in Trinidad.  I knew nothing of cold weather and snow and jackets and gloves and...I can go on and on...I've been in Atlanta for 18 years (gasp!) and every year handling winter gets worse for me - for instance, this year i'm hibernating.  if i ever leave da A, i will be moving south - I ABSOLUTELY LOVE THE HEAT!!  this cold weather truly is for the dogs!

My Home and Our Flag

Well...how "lucky" am I that heat exacerbates Multiple Sclerosis???  For an MS patient, alot of times summer is dreaded because, if displaying symptoms at that time, the heat will/could worsen the symptom.  The "good" thing about this is that once the body temperature cools down, the symptoms (writing this blog has taught me that i cannot spell that word on the first try) are generally rapidly reversed.  It is suggested that, among other things, we (patients):

• Stay in air conditioned areas (i really don't enjoy a/c - esp when i'm in the car and driving; "G" absolutely hates it because i dunno, but I'm beginning to think that she actually didn't grow up in Trinidad afterall)
• Use cooling products during any outdoor activity
• Exercise in a cool pool
• Drink "icy" drinks that may provide temporary relief

(as a side note, i must mention here that sometimes the flip side is true too - there are patients who are affected by the cold! - that's MS for u)

I am yet to experience any exacerbation of any symptom during summer OR if i did, it wasn't so marked that i noticed.  Oh well, as i mentioned before I'm hibernating this year AND I AM counting down the days to being able to drive with my car windows AND sunroof open!

A few fears...*GASP*

So...since being diagnosed i do have some fears.

• FALLING - this actually is one of my biggest fears; what if I fall and hurt myself; sometimes i am so stiff and have little balance - did I mention that i live in a 3 story townhouse?  I have to contend with 32 steps everyday!  When I do go into the office, I work downtown on Peachtree St.  For those of u who don't know, Peachtree is the Frederick St of Atlanta.  i am so afraid of falling on Peachtree St, that i feel ill just thinking about it!

True story: I was in Form 3 (13/14 years old) and my mother FINALLY said "ok, u can take maxi - (public transport; there are no school buses in Trinidad; we either took public transportation OR ur parents took u back and forth - so she finally let me take public transport) home after school." I was so excited; i get to walk down Frederick St, lime in Colsort Mall etc (close ur eyes Mummy) and take taxi! WOOHOO!! lime now start!! Well halfway down the street, i fell!!! Yup - my bookbag went 1 way, my binder a next, I was MORTIFIED!!!! how? How d hell did that happen??? To this day,OB(my father) gives me a hard time about it - in fact the other day he told me that he was somewhere and somebody fell up ahead. He said he looked to see if it was me!

• Not being able to walk - probably a close 2nd.  I know that this is also not the end of the world, but it is what it is...
• Pain; I can't say this enuf - I am LUCKY; these days i have no pain
• The unknown - the thing about MS is that it affects people differently.  At any given time, who knows what the disease may have in store for me
•  Falling and not being able to get up
• Holding babies - esp if I'm standing up; suppose i am holding 1 and i fall!
• Walking between cars in a parking lot; this probably is not so much a fear as something i dislike doing - esp when 1 of the cars is not mine...suppose i lose my balance and end up falling/leaning on 1 of the cars!
• Wearing heels...yes because u guessed it - i WILL break my ass (fall)

Maybe one day, i will overcome these fears - who knows, but until then I:

• Stay away from the babies - unless i'm sitting down
• Cross the street very carefully only at the crosswalk and ALWAYS wait for the light (no guarantee, but worth a shot)
• Wear slippers & sneakers almost everywhere i go; helps me to be sure footed

I guess this goes back to my knowing my limitations and not putting myself in situations that i can't handle, but...

u know what they say about the best laid plans...

Work 'n Me

I joined the team i'm on at work in March 2007, just before "my episodes" started happening.  By the time they were in full force, i decided that i had to tell my manager something; I couldn't keep this from her even though we are a virtual team and she was in Arizona at the time.  I told her my "little tale of woe" and she was most understanding and, in fact, it was her encouragement that eventually led me to the discovery of the Multiple Sclerosis Center of Atlanta. 

I've spoken to other people who've hidden their medical issues from their managers - I'm not a believer in that.  I feel as though, at the minimum, your immediate manager should know what's going on.  Now, realistically speaking, not everyone may be as understanding as my manager, but i do think that it's important that they be kept in the loop because u just never know what might happen to you and what u might need from them 1 day.

I am LUCKY!  When i joined the team i was working from home 2 days a week, now i work from home permanently.  Not having to fight with getting ready to go to an office, fighting traffic (MS or no MS, let's keep it real), having to explain myself to people when things are a little off and a HUGE fear that i have (story for a later posting) are small things that I am grateful for.  I am also grateful for an understanding, supportive manager with whom i can be totally honest every step of the way.

My Good Deed

I gave blood yesterday.  I've been doing so for a while now...at least since 2007 and it never gets any easier; the diameter of the needle is (-----) at least that. oye! (k, maybe a slight exageration on my part, i'm known for that, but it's close).  It sill hurts and practically leaves a hole in my arm.  I tell the associate EVERY single time that they have 1! shot and that's it - no do overs, poking around trying to find the vein, none of that.  If u miss on ur first try is ah hard luck (too bad)!  Not my problem

i'm a pint low...u have to forgive me for not writing anymore today - i get 1! free pass.

Join the American Red Cross and become a blood donor today!

Y this; Y now?

I'd been thinking about starting a blog to write my MS story for a few months now.  Even tho i was tossing the idea around, i never gave it too much thought because:

• I never had a diary (i tried, but never could never get past the 1st page)
• I am shy (some people say otherwise, but i really am)
• I barely understood the whole concept of blogging
• I didn't think anyone would really be interested in my story
• What if i have nothing to write about, then what?

I told a couple people and they all said, yes, that would be a good idea, but i still wasn't convinced.  Then one day, i was playing around, kinda bored and logged onto this site and published 1 post.  I told "S" i was going to do it and he encouraged me; told me that i had a good story to tell.  The first post was short and i really wasn't sure how i would continue.  Well!  It's been 19! (but who's counting) posts later and i can safely say that i am thoroughly enjoying it - never in a million years would i have thought that i'd actually want to tell this story. 

At first, i would ask people if they would read it and then send the link but then, slowly but surely i realized that while this is cathartic and therapeutic to me, it's touched people in ways that I NEVER expected and so i've been sharing the link and letting people know that if they think someone else might benefit from how I've been handling the situation, forward it along.  The responses I've gotten from allyuh (y'all/ u all) have been tremendous/awesome (i can't say that word, i sound like a fool when i do; but I CAN write it). 

So "THANK YOU!!!" for allowing me to share and honestly, I think it's also made me realize that i really am handling this "awful" situation in the best way possible.

My "daily" shot routine

So, u'd think that taking the shot will get easier over time.  Well it did and it dint for me. 

There are 7 sites on my body that i rotate to take them.  I think that the woman who gave me instructions on how to administer was a "crackhead".  She said that there are 7 sites, but if u dont feel comfortable, u can use only 2 - WRONG!!  or maybe i should say that that was ill advised...2 of the side effects of the medication (esp at the beginning) are swelling and itching at the site, so imagine using the same site over and over and over...it doesn't make for a pleasant experience.  When i realized that using my legs alone was not a good idea, i branched out to the other sites - arms/hips and then eventually convinced myself that i should start using my stomach (that was the one that i was really afraid of).  At first, i had to keep a diary to record which site i used until it became a routine...

• Monday - left arm
• Tuesday - right arm
• Wednesday - Stomach
• Thursday - left leg
• Friday - right leg
• Saturday - left hip
• Sunday - right hip

Well...that is where it became easier over time...the routine and it doesnt swell/itch anymore.  Where it DIDNT become easier is my remembering to take the damn thing everyday.  What the?!?!?  That couldn't be normal...how the heck could u have been doing something for 3 years and then all of a sudden forget to take it some days???  I admitted it to my doctor; i couldn't tell a lie when he asked me how it's going (it's not very frequent but still).  I really think that it's my subconcious playing tricks on me...esp when i have to use my legs because they hurt the most (I actually DREAD thursday and Friday mornings because of that).

If we're out, "G" or "A" will turn to me and ask, "Miss (My girl), have u taken ur shot?" and sometimes I have no choice but to meekly respond that i didn't because i just totally forget!

Fete-in

has taken on a new meaning for me.  Back in the day in Atlanta, i was 1 of the students; we would get to the fete (party) and IT WAS ON!!!  d fete/wine now start!

That was then...

those days are gone...I was at the Destra/Faye Ann concert here earlier this year, standing at the back (with my chair!) and someone came up to me and said, "what u doing here? this is not u...u supposed to be in the middle of the crowd up there."  He was one of those people who used to be at those parties back in the day and knew me.  I told him the truth, briefly - sometimes it's just easier to tell the truth - me cyah bother lie.  That truth is that I am stiff a whole helluva lot, will start to dance/wine and then be out of time because of the stiffness/shit going on with my legs/feet.  Half the time too, i'm afraid that i might lose my balance and fall.  *GASP*; so not cool...so i just lime on the sidelines/in the back and enjoy from there.

so fete now start - on the sidelines, but we jes listening to the music and watchin everybody else get on bad; that can be almost as much fun.

Feting on the Sidelines

Carnival *sigh!*

I cannot play mas again! WOWZER!!! it's just too heartbreaking to be in the middle of it and not be on the road; hence my breakdown in DC last year.  One of my favorite lines in "Unconditional Love" by Machel Montano is "we hypnotized by the music from d truck so we walking for miles"; it's such a true statement and really captures the essence of Carnival...well 5 mins into walking those miles, my ass would have to stop! 

We have come up with a way around it of course...we only play in bands that we have contacts/know the leaders, so that we can organise for me to be on a truck.  For the past 2 years in DC (it's the only mas that i actually play in up here), I've been a fixture on the drinks truck in one of the bands - and that's my parade.  It could be worse, it could have been that i didn't even have that option.

I don't think that i want to go back home for carnival ever again - at least not while suffering from Foot Drop/weakness.  While i am not a burden to my friends here, i know that Trini carnival is a whole nother beast and i cannot/will not slow them down besides, if i cried down the place in DC, what the hell would happen on Independence Square!

My Support Group Part II aka My family

"the 'rents" are not here; they are still at home in Trinidad.  I know that my mother wishes that she were here to be with me while i was being tested and the diagnosis, but I had the next best thing; Gib was here.  Many times i also wished she were here too, i dunno bout allyuh, but when I get sick, she is the first person I call...but it is what it is and she lives at home.  I've also called her to be "talked off the ledge" a time or 2 and as I mentioned before she has told me that i cannot return the disease, i have to live with it.

I have to credit them both for my positive outlook on this situation.  Anyone who knows OB knows that he is the life of the party without even trying too hard and Learls, even tho she is more reserved, eh too backward herself.  I know that i have their support - even across the ocean and they are just as "in this thing" as Gib is.  As I've mentioned before in tru Trini stylin, there is never a dull moment when we're together.  Laughs/jokes/picong (trash talk) cyah done...that is the best way we know how to deal with difficult albeit serious situations.  "S" calls it "my caribbean/Trini way of thinking".  We really try to make the best of a bad situation and i don't waste time on things I cannot change or control.

My Support Group part I aka My Friends

I couln'd t do this without my "support" group.  In tru Trini style, we make light of a difficult situation.  If I don't laugh, i certainly will cry and that is NOT acceptable; as I was once told, "MAN UP!! MAN UP!!!...we have NO time for crying/tears right now!!!".  In their defense, G and T, it was on Georgia Ave in the middle of DC carnival!  :-), but i think their reaction made me cry some more.  It was 2008 and the gravity of the situation HIT me like a full BUS (It was the first time that i'd actually cried since being diagnosed) ...oye!  I will not be able to play mas ever again! 

I had actually spent my last carnival at home sleepign on top of a speakerbox on top one of the trucks...if only i knew then what i know now!!!

dem...and a few others

Anyhoo, I digress.  My friends; they keep me going...

• G; my rock - I'm not sure if i could have even gotten this far without her.  She will bouff (who really knows how to spell that word) anyone into submission to ensure that they take care of me when she is not around.  I've had to call her to talk me off the ledge now and again
• J (W?) heeheehee - in Miami this year, whichever fete we went to, the chair was slung on his shoulder  like a shoulder bag.  He drives a HUGE truck and it has no footladder to climb in and I ketch my ass alot trying to get in (but that's besides the point)
• K - She always ensures that she is available for me to hold on to; even when i say that i'm okay...because she fears G's roar.  She also was arrested (okay, she likes to say detained; but it makes for such a better story when we use arrested) because she was arguing with one of Dekalb County's finest outside a party about a small situation that we were in because of the MS.  I was standing next to them and the next thing i knew, he was hauling her handcuffed ass to the backseat of his car!!!  WDF!?!? :-)
• D is no longer in Atlanta, but he is missed...even tho he did watch me fall twice(!) in one party.  In his defense, he was ah lil tite
•  A is somewhat new to the crew, but sometimes i feel like she is my BIGGEST supporter.  In FL earlier this year, I had a lil fight with the ocean and she was there to ORDER me out - lest the ocean became victorious!

I could go on, but suffice it to say that i really have the best "support group" that someone in my situation could ask for.

I have to mention this...I was raising funds for the MS Walk of Atlanta and I was soliciting funds from someone...The conversation went like this...

Me: Don't u want to donate?  it's for a good cause...it's the MS Walk

C: What??  *$%@** MS Walk?  Why I must give dem my money??  Who we know with that...I not donating to that...

Me: Well....actually I was diagnosed last year

He's ah red man and he turned even red-DER.  I had a good laugh, he - not so much!  I reassured him that I/it was okay...we had a long talk about it/my daignosis etc but poor fella...to this day, I'm not sure if he has totally gotten over that!

Laughter is one of the best medicines! (No prescription req'd)

Coping

So i was talking to a friend and he reminded me of something i forgot to mention b4...one of the first questions that i asked the Dr. after we chose a treatment was "Do i have to stop drinking???!!!"  Luckily, the answer was no!  I cannot tell a lie, the day I am told that the alcohol will have an adverse effect on my treatment is the day that this shit will become unbearable!!!  C'mon now...let's keep things in perspective now :-)

My Poison of Choice

My mother has told me, and of course she's right...I didn't buy it, so i can't return it!  As a result, I have to deal with it.  I have my good days and bad ones- mostly good.
I was a little concerned at the break of 2009 because history has shown that i have major crap happen every 2 years...2003, 5, 7...hmmm, but i've been fine this year - apart from the occasional fall, there hasn't been anything to "write home" about.

Alot of people tell me that i'm courageous - 1 person actually told me that i was her hero (and i was confused when she told me, but then i figured it out).  I appreciate that, but it always amazes me because i don't think that i'm courageous or a hero; i think that i'm just dealing with a situation over which i have no control.

it Continues...

It was sometime in 2006, i think (i should have started this blog earlier), that i noticed that i was suffering from a syndrome known as Foot Drop.  That happens (with me) when after walking or standing for long periods of time, my feet become so weak that it's difficult to walk properly.  G and I went to the AIDS walk here in ATL and i noticed that "something" was wrong with my right foot, but i couldn't really put my finger on what.  G also noticed that she kept hearing a "thunk"/"thunk" as i walked along...and then we looked at my feet the right foot was just kinda "dropping" along as I walked.  She kept telling me to LIFT UR FOOT!  LIFT UR FOOT!!, but i couldnt really...it's one of the moments that we laugh at now.  I finished the walk, but had to be carted to the car, where she took over the driving.

That symptom has progressed and gotten worse and is the 1 constant symptom that i experience/have been experiencing since.  Now...i cannot stand/walk for very long at all and in fact, my gait is "drunken" looking.  Sometimes it pisses me off because i'm sure that other people see me holding on to people that i'm with, walking funny and they think that i must be tite - esp if it's somewhere that alcohol might have been consumed.

I am lucky - I have no pain!!!  It's just a weakness/un-com-fort-able-ness (esp if I'm walking alone) that i know that i have to deal with.  I have since learned my limitations and don't put myself in a situation that i cannot deal with. 

• Everywhere we go, i walk with a chair to make sure that i will be ok

Funny story:  We went to DC carnival this year W/O the chair and had to go in search of one at one of the parties...well the only one we could find was a baby chair...J said that he refused to let that happen again!   See below!!

 

• I use a wheelchair when I'm traveling; much to the delite of any travel pardner
• I have a handicapped decal in my car (and it can be used in any car that i'm in - again, much to the delite of many others
• I roll around Kroger (the grocery) in a motorized cart most times; those things are not as easy to drive as u might think!  I've had a few close calls...

Acc to someone smart, "it's time to make this "Kiss Meh Ass" MS work for US now, since we have no choice but to deal with it!"

2007...

April 2007 thru October 2007 were rough months for me.  it began - again, very innocently - at a Beerfest (of all places!); in fact i just opened an email from them to Save the Date for 2010.  I was walking thru the crowd and i noticed that at times i would feel really high/tipsy and then nothing...hmm, i figured that maybe i was drinking too much beer and just getting tite...hmmm, odd tho, that the feeling would come and go, but hey, beers was flowing; i was happy.  Well after that (no drinks involved) i noticed that ever so often during the day, i would get this weird, high feeling that would last about 5-10 secs and then disappear...it just wasn't making sense.  I went to the original neurologist who sent me for another MRI, saw no additional legions on my brain and then told me point blank, it's not the MS!  I went to my PCP who sent me to an opthamologist(?) who sent me somewhere else...I was actually sick of people telling me that they couldn't find anything wrong...that was also about the time that i was getting sick of being called "Mrs. O'Brien" as well, so i started shopping around for someone else.  The thing about finding someone else was that i CERTAINLY wasn't trying to go thru the original testing again and i hoped that that would not be the case - that's when i found the MS Center of Atlanta - WOW!  who knew such a place existed; i was so excited...

By then the "high" feelings were accompanied by double vision and lack of motor skills.  I was speeding/driving (some say i drive like a bat out of hell - i beg to differ) along 285 (4 lane highway in Atlanta) and realized that it wasn't cool seeing 6 trucks, when in fact there were only 3...i got home and told G that she had to start doing all the driving - the beginning of my "non-hero" days

She doesn't appreciate that to this day.  she NEVER drove if i was in the car and now she had to do ALL the driving - what the?!?!?

It was about that time that the jokes also started.  With my lack of motor skills, if it happened while i was walking, i really looked like a puppet OR i was marching.  one day D told me that all i needed was a brown uniform and some cookies to sell!  It was embarrasing; esp if i was walkign by myself.  S told me that i should stop walking when it happened, but that was just odd for me to do. 

One person (who didn't know anything) asked me one time whie it was happening if i was okay and why i was walking like that, i didn't have to answer because she kept walking as she asked.

I went to my new neurologist (who calls me Stacey, btw) and he said to me, well it has to be the MS, what else could it be, there's nothing else wrong with u...i could have kissed him.  THANK U!!!!  In retrospect i think that that was all i wanted to hear because at least that explained what was going on.  Of course, with me, nothing is ever straightforward...so he explained that it was odd that the "episodes" (as they lovingly were called) happened all day long for about 5-10 secs at a time, but i should monitor, stay on my shot (of course!) and come see him again if things get worse...

i did that...luckily things diddn't get worse, so i didn't have to go see him outside of the schedule and then just like that in October/November, they stopped!  The disease had declared war and said to me, "yeah u're the human and i'm the disease, so Take DAT!!!"

What's Next

Well, what happens next is that i have to come to terms with this shit!

i honestly don't remember what emotions i went thru (i can barely remember what i did yesterday, c'mon) but i do know that i eventually told myself that

1. it could be much worse; this wasn't the worst thing that could happen to me...
2. it is manageable; it was discovered early enuf - I am NOT going to DIE
3. i can/will get thru this

The hardest part initially, to be really honset, was having to give myself a shot (UGH!!!).  I can remember 1 time not having the injector and absolutely REFUSING to take it - a friend insisted that he do it for me and from what i remember he had waaaay too much fun doing it; which brings me to another point, quite a few friends of mine were toooo happy to hear that i had to take a daily shot and were extremely willing to help me out! 

After my diagnosis in 2005, things were quiet/normal even...if not for the bloody shot, i might have forgotten that i had a severe degenrative disease...I used to say, "I am the human, u are the disease - forget u!"...

but then it was April, 2007!!

The date was 5/19/2005...after confirming that it was MS, my doctor was anxious to get me started on treatment.  The earlier it is diagnosed, the earlier the treatment can start and the better off as a patient you are.  How extatic was I to find out that the only available options were shots - not the alcoholic kind; those I could handle (sorta) - no...i had to endure giving myself an injection everyday!  UGH!!! 

True Story:  As a child, i had no problems taking shots...as I got older and smarter, i hated it!  I remember being in Form 4 (5)? (for any non-Trini reading, that was 16 yrs old) one time and having to take a Yellow Fever shot...I held on to my teacher and cried like a BABY while the nurse was administering the shot! 

So now...here is this woman telling me that i would have to read thru the pamphlets on the various treatments and we would talk further about which one i should go on. *Uh...how about none???*  Unfortunately, at the end of it all, i ended up choosing the daily shot.  Of the 4 options available, it had the fewest side effects, it would be the best option if i ever decided to get pregnant and whilst it is a daily shot, there is no mixing/preparing the medication and it comes with an injector so i actually don't even see the needle till I'm done administering.

Around that time, i realized that i had been displaying/seeing/experiencing symptoms for up to at least 2 years prior.  Back in 2003, my vision just got blurry...i did a slew of tests and noone could find anything wrong.  I remember having a conversation with my personal doctor :-), Dr. Laurence and saying that i couldnt understand y anyone couldn't find anything wrong because I knew that obviously there was SOMETHING WRONG!!!  Eventually, my vision just corrected itself, and it became a thing in the past; one of those things that just happens and u move on. 

How was I supposed to deal with the fact that I had Multiple Sclerosis; no-one in my family has this, i din't know anyone with it, i wasn't sure what the next step was supposed to be...

Multiple Sclerosis

Multiple Sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. In MS, the body's white blood cells attack the protective covering for nerve fibers in the brain tissue called myelin sheath. The myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.
When a myelin sheath is worn down or destroyed, the nerve fiber becomes exposed. The exposed nerve fiber is less able to transmit nerve impulses. As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas.  these are referred to as lesions or plaques and this is what shows up on the MRI to help with a definitive diagnosis.

 

I have Relapsing-remitting MS - in other words...my syptoms come and go (as they please) and then stick around for a period of time and then disappear.

The f*cked up thing about MS is that it's not known what causes it, as a result there is no cure.  It's a degenerative disease and as such the treatment for it just slows down the progression of the disease.  It presents itself differently to patients, altho there is consistency.  Symptoms tend to fall into 1 or more of these buckets:

• Sensory
• Vision
• Cognitive
• Bladder/Bowel
• Sexual Activity
• Movement
• Fatigue

I have to admit, that of some stories that i've read, mine seems to be mild - ish! (so far) I've had some things happen...but that is a story for a later post. 

My Diagnosis

I HAD to schedule the Lumbar Puncture, I s'pose.  I remember singing very loudly in my head to distract myself from the EXTRA LONG needle that was being stuck into my spine.  That year one of my favorite Carnival songs was 3Mile...and that was the song that i sang over and over - I think that Gib was in the room too.  As it turns out, it really wasn't that bad, i guess singing the song (or something else) actually helped.  The week after however was TORTUROUS!  the thing about the spinal tap is that they are taking a small sample of spinal fluid from ur spinal column.  the procedure actually leaves a hole (the bloody needle is so big) in ur column and if u don't lie flat for it to heal, the fluid leaks which causes extreme headaches.  Well i am (was) a hero and at that point, i hadn't told my mgr anything, so i was going to work as if things were normal, when in fact they coulnd't be any further from.  My head and neck used to feel like they were in a vise grip and eventually i could take it no more.  There is a procedure that can be done called a Blood Patch (they take some of ur own blood and inject that back into ur spine which seals the hole) but of course there are risks involved as it is a surgical procedure.  I didn't care, i just wanted the pain to stop...

I couldn't imagine how well that would have worked, but as soon as my blood was injected into my spine, the pain vanished - it was incredible.  That was the first time that I cried since all this started because i actually felt all alone and i couln't imagine y this was happening to me...

2/3 weeks later, the results of the Lumbar Puncture were in.  That combined with all the other test results confirmed that I had Multiple Sclerosis.

HAPPY THANKSGIVING!!!!! 

It's 1 of the 2 American holidays that I have completely embraced...

Results

The muscle relaxants worked...whew!...but i had to go back for the MRI and test results.  I'd never had an MRI, had no clue what to expect - lemme just say that good thing i am not claustrophobic.  The technician put a "hanibal" looking mask around my head, gave me some ear plugs and said, "Just lie flat, try not to move and I'm going to take a few pictures of ur brain.  U will hear some loud noises and the test should last about 1/2 hr." She left the room...I was lying on a flat surface (don't remember if it was a bed or not) and there was another larger flat surface hanging above me.  She then said into a mike from the other room, "ok, we're going to start now." the flat surface above me started coming down and stopped within an inch of my face and i had to stay like that for the duration of the test - needless to say it was one of the longest 1/2 hours of my life.

This picture is a much newer version of the machine i was in/under/between.

I went back to see the neurologist, he came into the examination room and he said, "Mrs. O'brien, u've either had a mini stroke or u have Multiple Sclerosis." Please indulge me for a a minute...many times before the eyebrow twitching, i used to feel a tingling in my left arm and everytime it happened, i would jokingly tell my sister that i was having a stroke and she would laugh and tell me that i was an ass and we would move on with our day...now here is this neurologist (who i've since dropped; he didn't have a good bedside manner and he INSISTED on calling me Mrs. O'Brien - dumb ass) telling me that it's possible that i had had a mini stroke in the past...WHAT?!?!?!

From what I remember, he proceeded to tell me a little about MS and then told me that we would have to do more tests to be absolutely sure because of course I would get the disease for which there is no definitive test.   The tests?

• A Visual Evoked Potential Test (what the hell is that)
• A Lumbar Puncture (all i've heard about this is how painful it is!!!!!)

Wait a minute...I din't sign up for this...didn't Richard Pryor die from MS...I wasn't ready...not now...not at all...WTF?!?!?

The 1st signs...

So it started simply enuf.  I woke up 1 day and my eyebrow started twitching - no biggie, that happens ever so often....well 2 weeks later, it was a pain in my ass....I decided to go see my PCP.  He referred me to a neurologist...oh goody!

Of course, in these times a self diagnosis is also important, so I went to WebMD and entered a "twitching eyebrow" to see what would come up...by the time i went to the neurologist, my sister and i had diagnosed me with Bell's Palsy - WRONG!  (this is why we don't have our medical degrees)

I went to the neurologist, he examined me and said that he wasn't too sure so i would have to have an MRI done. i ws still ok at that point, but i wanted something to stop the twitching - because at this point, it was embarrassing. It had moved!!  The entire lower left side of my face was CONSTANTLY twitching/moving/vibrating...I couldn't take it...he prescribed some muscle relaxants and sent me on my way...I would be back in 2 weeks to get the results of the MRI.

The Beginning

Okay, so i'm trying this out for the first time. I know a few people who "blog" and they've all told me that it can be quite therapeutic. I figured, what the heck, i'd give it a try.



So i decided to start this blog to share the story of my living with MS for the past few years and how it's changed my life.