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!

Monday, August 4

My Disability

I always just measured my disability by my struggles with walking; I never really thought of my hand as a contributor. It only dawned on me the other day (when I wrote this) that "wait a minute, the fact that I can't use my hand as I want to is a disability too". I swear I never thought about it before - call me stupid, but it is what it is - go figure! We do this thing at home - If u ask someone to do something for u, the person can look at u and ask, "wha'am? Yuh hand pok?"- essentially, the person is asking if something is wrong with ur hands that u cyah do (whatever) for yourself.  Well, I can actually answer with a resounding "yes" if anyone says that to me. 

Like everything else that i have going on, it's my left side and it happened over a period of time. I actually remember the conversation I had with Learls when I told her that "something is going on with my left hand now".  Pity tho, I don't remember when it occurred. Anyhoo, at the beginning, I would notice it kinda curling a little when I walked and even more so when my legs got fatigued. Then, it became really bothersome especially at the end of the work day because of all the typing I did - that's when I got the Dragon software. 

  • Side note: I actually type with one hand quite easily in this new position.  I'm no longer developing reference material.  Now, I'm in numerous spreadsheets, so it's easy to just use my right hand but I do use Dragon when necessary. 

Well, these days, it's curled up tight on a regular basis, like curled up shut; in a kinda fist if you will. Now, I can pry my fingers open (with my right hand or sometimes I can actually open it up) and use the hand (somewhat) but it's as if its natural state is to be curled up in a ball - my PT has given me exercises to strenghen. As with everything else, I have no pain so it's just more a pain in the ass than anything.  It definitely contributes to my disability tho (how did I not think so before? Who the hell knows?). Try and do ANYTHING with ur hands while one is curled up in a ball. Go ahead, I'll wait


pain in the ass right?  Ugh! Have I ever mentioned that being sick sucks??? :-) 

Wednesday, July 30

Having Multiple Sclerosis


Where the heck did I go and pick up this disease? Why me? Dunno that I'll ever get that question answered but with some luck maybe i will in my lifetime. Anyhoo having MS makes me feel:

  • Loved - don't get me wrong. I knew I was loved before but the things people (my family, the inner,  outer & outer outer circles) are willing to do for me at a moment's notice if necessary, are never ending, unceasing and amazing.
  • Resentful - I HATE MS and being sick
  • Scared - I know no one knows what the future has in store, but I sometimes feel anxious because I don't know what this disease has in store for me and what may happen tomorrow morning when i wake up - hell what it could do in the next couple hours
  • Like I'm regressing in life - the natural progression of things is NOT to buy your first house and then move out of it into an apartment. I know that it's to make my life easier blah, blah, blah, but…On the other hand, i do have a jump start on walking with a cane tho.  I once overheard 1 lil chile (i didn't know) tell another, "she's old."  yes - she was talking bout me.
  • Tired - I get so tired, sometimes, of needing/wanting help. A few weeks ago, I asked G if she doh tire of helping me out. She said no but she does tire of my trying to do things on my own when I know that it may not work out (I don't do that a lot but...)
  • Lonely - I've learned to lime by myself. If we're in a fete and everybody is doing the normal thing people do - walking around socializing, I can't/don't/won't in the scooter, so I'm by myself often. It's all good - I'm a cool person to lime with :-)
I really can go on...I keep thinking of words to add to the list but I'll stop - maybe i'll do another installment sometime; that's it for today.

As u were!

Thursday, July 24

The Porcelain Goddess

I know that u jes read this title and now you're wondering, "huh? Where is she going with this?"


I have an imaginary process map (diagram that details all the steps in a process used to identify gaps in the process) in my head for just about everything I do regularly. If things don't happen in a certain way, I could get anxious, lose my balance or worse yet (u know it) fall.  One time Learls was here and she made a comment, "Every time i put this in the right place, it get moved"…uhm, it's because u're putting it in the WRONG place, i have it there so that i can reach it without drama.  There's always method to my madness - ALWAYS!    I've mentioned here before that I cyah hold my pee. Technically, that's not true because I just wrote the statement and I thought of somebody having no control whatsoever and I do have control; I just can't hold it as long as allyuh regular, disease-free folk.  As a result, I don't ever wait till my bladder is busting at the seams to visit the goddess. 

  • True story: I've actually gone to check her and...nothing! Why? Cuz she was one that I didn't mind using so figured i'd take advantage but since I didn't have to - nothing!
Anyhoo on the odd occasion that I do wait longer than i should (only at home - of course), you do not want to see me walk.  Between holding and trying to "speed walk" to the goddess it's jes too much for my poor body so all my problems kick into overdrive. The stiffness in my legs, the weakness in my left hand - ugh! I'm really not a pretty sight and then I get to the goddess and she's closed. ARGH - I have a cane in my right hand, a non working left one and if things are really bad, stiff legs (and doh get me started on the fact that i'll have to turn around to sit down). More PRESSHA!!!

I identified a gap - maybe not so much a gap, but an opportunity for improvement.  So these days I've taken to leaving her open (is that how to describe?). That way, there's one less step that I have to do/think about. It goes against every bone in my body - leaving her with the lid up - but I realize that it's just one of those things that needs to be done to make life that much easier for me.  hey, it's the little things!


TMI? 

Thursday, July 17

Side Effect?

World Cup started June 12th so the 14th I sat and watched 4 football matches and what did I do on June 15? Sit and watch 3 football matches - oh and ate lunch and dinner in between.  So there was no way that I could NOT notice that I'd been feeling fluttering in my chest the whole weekend. What the?!?! As with anything MS related, I started monitoring it.

  • Let me take you back a few years. I used to tell G (I'm older) that 35 is the magic number. At 35, my body started nudging me (MS aside) and saying,"aye!  Settle down. I not as young as I used to b yuh know". That's when bones started hurting and joints started creaking. She laughed me away because you know, i talking shit. Eh heh? At 35 her heart palpitations began! She got it checked out and all is good but...

What the hell? I was getting heart palpitations that lasted about 6 secs every so often all day long!  It felt like somebody had a feather and was running it along the inside of my chest. Now if u remember, I had bout 50 EKGs before and after my first dose of Gilly. The heart is something to watch while on it. Great! Was I experiencing something as a result of my taking Gilly? I really didn't want to but I made the call - remember I not trying to hear that I hadda give up Gilly...I didn't hear that. Whew! Luckily nothing else was also going on at the same time - no dizziness, nausea, nothing so (i'm guessing) that's why the nurse at the MSCA told me to continue taking Gilly and go to my PCP.  

I went in and...u guessed it! Another EKG!!  good news - it was normal but just to be sure Dr. J wanted me to wear something called a holter for 24 hours - it monitors heart activity. I did, he got the results (I assume)...I haven't followed up :-(  The way I figure, no news is good news. The doctor's office ALWAYS calls when there's a problem right? Ok ok I'll call later - I promise.

k…so maybe my body didn't look exactly like this but u get the picture
Btw, I wrote this last nite...the last time I felt a palpitation was last week Friday nite and before that? Not even Friday during the day so I haven't a clue.

It's all good man :-)