Tuesday, October 26

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...

Monday, October 25

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!

Tuesday, October 19

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!

Monday, October 18


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!!!).

Wednesday, October 13

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... 

Tuesday, October 12

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!