Thursday, June 23

Stax 4 Part Deux

Before I start writing this post, I hadda say that I'm not writing in any order here. I'm just talking about the past year and if I have anything current to include, well that'll happen too.


The dream of Stax 4 being an Infiniti coupe remains and will always be just that...a dream. 

Had a real nice picture to insert are but either my dinosaur of a laptop, blogger or both of them together were fighting me so u hadda picture me in a deep, red G35 coupe - i look good eh?

I haven't driven a car since May last year. OBs was here then and one day as we got in the car to go wherever (or it might have been when we were coming out), it occurred to me that I was relying heavily on him. The driving itself is fine (unless I get stuck in traffic - the constant stop and go switching from pedal to pedal fatigues dem legs), it's the simple motion of hauling my left leg in the car after I'm seated and reaching to grab and close my door - that's what I can't do. (i'm beginning to really dislike Blogger - y is this text centered?  steups) Lemme explain...my left hand curls up - ESPECIALLY when I need to use it - and I usually have to use the right one to open it up.  In addition to that, when I need the hand, my elbow doesn't like to straighten...ugh! So, I can't reach the door handle and AND I can't grab it to pull the door in. 
I don't remember what I did/how I spent last summer but I can tell u that when my hibernation period started, I wasn't mad that I wasn't driving cuz I wasn't venturing out anyway. But of course winter FINALLY had to done this year and I started thinking seriously about biting the bullet (I haven't had a car payment since May 2013!) and getting an accessible car - I knew that there was no way I could be stuck in here after winter was done, I'd lost so much independence because I couldn't drive. Well I called T-ster cuz I knew he could guide me. One day while we were talking, he said "Stax. Y u putting urself in this expense. U ever thought bout using Lyft?" Lemme tell allyuh...long story short, that was the best advice EVER. let's just say that from the first weekend (as nervous as I was, I was determined to get out), I've not looked back. Wild horses can't keep me in this apartment on weekends and I've regained much of my independence. 

Stax3 is still around. It's amazing how people come into ur life sometimes just at the right time. I've known this older couple for years - one of the first outside Trini family - but we were never really close or stayed in contact outside social settings. Unfortunately it took a very sad event to bring us together, but they currently drive Stax 3 and do some other things to help me out just when I needed to find someone. I do miss my car and driving sometimes, but wha ah go do? In these instances, I just hadda think about the "what if situations (if I drive somewhere...and there could be many (GASP!))" and I know that this is how it has to be. 

That's it for now...hol it dong.

Stax

Thursday, June 16

Hi

It's been a little over a year.  I stopped writing because my disability was getting worse and I no longer enjoyed(?)/looked forward to(?)/wanted(?) to write about things going in a downward spiral. I think I'm at a point where I'm dealing with the worsened state and I'm okay with it (at the end of the day, I have no choice right?) and I actually want to come back - been thinking about it for the past few days.  So...how to catch up...plenty to talk about. 

First things first I suppose, walking with my beloved canes became more and more treacherous. Before I get into that I must say that I have no additional/new MS symptoms - my complaint has always been the steady decline of my walking (I'll get into details later) and it still is. Also, my left hand followed suit and curls up a lot (read "anytime I friggin need to use it") and so that just got progressively worse over time. My canes...I had to overcome a psychological hurdle and come to terms with the fact that I need a walker. I doh care what u call me, but walking with a walker sucks...I do it...and I do it with style ;-) but at the end of the day, it's a walker. I made the Soca Scooter my own and I still do (although these days the poor thing is making noises I never heard before) but there's no way to "jazz up" a walker.  I'll admit though, I didn't get the medical Grey one that u see people putting the tennis balls under, I got a 2wheel one that is black and grey with blue handles but guess what? Yup, it's still a walker. 






I NEED the walker...I cyah be schupid (it's just how we pronounce stupid), so I use it.  I think it's just a chounx wider than those other ones but it works for me. I do use Soca Scooter more now tho than when I walked with canes - sometimes walking doesn't make sense.  The other day I bought a tray for the walker so that if I'm carrying food (hell anything in my hands) I don't have to use the scooter in here.  There's good news too...I didn't have any bad falls before switching from the canes. So, I had to "hang up" my canes.  These days they just liming in a corner of my living room.  sigh! I do miss them

Alright...not going to give u everything in my first post so I gone so.  

P. S...Blogger has made some changes making me ketch meh ass to do this so bear with me as i get back into the flow of things.


Thursday, December 11

This is It

Fellas,

We've come to the end of this road. These last 6 years have been great (didn't think that I'd even last that long) but I can no longer write about being sick - it's no longer cathartic for me nor is it something I can do any more. I know I left yuh hanging for the past few months and a few things have happened that I can share but...gimme ah bligh.  Know that on the MS front, i guess things are as normal as they're going to be.

I hope you all have a great Christmas with your families and loved ones - as usual, I know I will.  I'll leave you with some parang, Baron - Caminante.



Hol it dong, I gone!

Monday, September 22

Secondary Progressive Multiple Sclerosis

Well...

I wish I could tell u that it was simply the lack of exercise in trute OR like last year, was jes ah infection that needed to be cleared up and I moved on. No. Nothing so simple...not at all. I've officially crossed over the line from relapsing remitting MS to secondary progressive MS. the way I've been describing to everyone I've spoken to is "(for me) think about it like a stage 1, stage 2 type of deal". Most (most) patients are diagnosed with RRMS - so essentially the person experiences relapses (exacerbations) for some time and then things go back to normal (my eyesight issues in 2003 (before i'd been diagnosed) and weird happenings in 2007).  About 80% (naturally I would fit into that category) patients with RRMS develop SPMS. The major difference between the 2 is that SPMS patients experience fewer relapses but worsening disability - I really can't think of another relapse after 2007.  The medication I'm on (currently Gilly and in the past Copaxone, Tysabri and Tecfidera) doesn't cure the disease, it slows down the progression so one may presumably argue that had I not been taking anything, I might have crossed over the line sooner than now. 

I actually went to the MSCA on 9/2. Had an MRI of the brain - good news there cuz there's been no change. I'm going to do one of the spine in December and I'm really curious about how that one will look - as much as I would prefer no change, I hope there some kinda explanation for the past month and a half. In light of all my issues, I convinced dr Gilbert to prescribe a bout of steroids - 3 days of IV administration at home. I won't bore u with the steroid stories but they provided some relief altho not as much as the last time as I'd hoped.  Oh I'll tell u this part...the nurse came over on the first day and eventually left after 4 tries to get the IV line in because well the company protocol is that patients must not b stuck more. They sent someone else the next day and the third time was a charm for her. My veins never fail to provide "excitement". Steups!!!

Thru this all, I've been okay - I'm dealing because what other choice do I have? Of course I had to let everybody know and (I think) they're all feeding off of me so we're all good. Hopefully this won't cramp my style and I continue to go out and enjoy life although I've already missed one party (that I NEVER miss) because I jes wasn't feeling up to it. After the party, Assenna actually emailed me to check up on me and make sure I was ok because she I wasn't there (a warm and fuzzy moment for me, I eh go lie) :-)

Sometimes I wonder if I'm in denial about this whole MS thing. Why haven't I gotten angry? Why haven't I cried (because I have it NOT because I cyah play mas)? And then I think, "well. What the hell is all that going to accomplish?" I'll jes get my panties in a bunch and because I'll b stressing, my body will probably shut down and then I'll cyah move and get more frustrated and all that for what? For NAUGHT so best I eh bother. 

So I'm adjusting to this new level and trying to do things as "normally" as is physically possible - altho, it's been tough dealing with my decreased independence - and i'm afraid to try to do things because, well suppose disaster strikes?  I've already bought my ticket for Miami carnival - looking forward to jes being in FL.  This year, the plan was to play j'ouvert instead of going on the boat but I stickin now in light of everything.  I'm still learning this body and what it can and cannot handle - have bout 2 weeks to make a decision.  

I have another update but this post is already long enuf. I gone so!

Tuesday, August 12

Ah Shit...

AC cancelled gym last week Tuesday. When I found out, I smiled cuz Monday night (after limn on a school nite - those days of bouncing back fresh and chipper are long gone), I'd actually been thinking of canceling myself but didn't.  Dr. G was in town whole week and even tho reliving our glory days is out, I canceled PT and we limed again Wednesday.  Thursday morning, I turned at the sound of my alarm, snoozed for my usual 45 mins, woke up and said, "I really really eh feeling gym this morning nah" so I canceled. As I was drifting back to sleep, I heard a little voice in my head, "Stacey.  u know u're going to regret this."

Thursday nite, I struggled walking around this apartment! WDF???  I felt so unstable and unsure of myself that I used the scooter INSIDE here - something I never do. I went to sleep and right then and there decided that if I wake up struggling the same way, I wasn't going to work. Friday morning, I was moving around a little better and was about to get ready for work and I said, "fcuk it. I'm taking a "Stacey" day." Those of you who know me know how out of character that was - I don't even like to call in sick when I AM sick.  My wretched disease was kicking my ass tho so I figured it was ok.

I really really do hope that all of this is as a result of my not working out or doing any PT for the week and nothing more (it's happened once or twice before but never been this bad). I've since done my PT routine and I'm moving around better but I'm not my normal self really. Went out Sunday and made it back with no drama so that, at least is a good thing. Went to the gym this morning (i was actually looking forward to it and couldn't wait) and even though unfortunately the workout was a shortened one,  already some body parts feel better but did it actually make any difference?  time will tell i suppose.

 Being sick really is a bitch!