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)