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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!!

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