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!

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!

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!

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??? :-) 

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!

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? 

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 :-)

Follow Up Visits

Soon after Atlanta carnival came and went, I went to the MSCA for my "3 month" check up. I swear I can give anyone of you a neurological exam (and I won't even charge as much as the doctors do). 

• Follow my pen with ur eyes only, don't move your head
• Squeeze my fingers
• (While seated) Push up ur thighs while I push down
• Push out ur knees while I push in etc. etc.

Anyhoo, I did good. I think I've mentioned on here before that individually, my muscles work and test great.  Put them all together to do one simple function and it all goes to shit!!! Anyways, my disability hasn't worsened since last year this time (that's a lie, i swear my left hand is curled up all the damn time) altho I'm much more dependent on my cane, so…ugh! What has happened with the cane is that times in the past when I fell and didn't have it, I'd start using it to do whatever/go wherever when I fell. So now, I'm using it 100% of the time - dunno if that's a good or bad thing.  I didn't really expect improved walking ability with Gilly per se but I was hopeful - oh well. I haven't had any flare ups of the disease (nothing out of the ordinary happening) so looks like it's doing what it's supposed to.  I head for an MRI in September cuz Dr. Gilbert wants me to be on it for at least 6 months before we get one. No additional lesions anywhere will confirm that Gilly is working. We talked again about Lemtrada because he thinks that I'm a great candidate for it;  it was submitted again to the FDA in March or thereabouts   An approval is not expected till the end of the year or so, so we'll see. 

I also went to see dr. Ray at Sears Optical because that's another thing that I now have to keep up with (being sick is a bitch!). Have to make sure I have no signs of Macular Edema. Well she did her thing, she told me that everything looked good and she was going to send the results to the MSCA.  Have I followed up to make sure they got it? No. In fact that only occurred to me as I typed the question. Heeheehee...guess I should do that. 

Anyhoo, so that's it for all my "things to take care of after being on Gilly"…as you were - i gone so.

Well...

It certainly wasn't my plan to stay away this long...smh! I have so many things to tell u, but I'll start with Atlanta carnival and "fete of the year" since that's where I left off. So cooler fete has lost its "fete of the year" title...that honour now goes to "Sunday Morning". It's the (you guessed it) Sunday of memorial weekend and starts at 8am. Wow! BESS FETE!!! It was in an open park-like area this year and at first, I was worried bout using the Soca Scooter (name given by B to the scooter) cuz of the grass but everything was fine.  I'll continue going to cooler fete because...well that's jes what I do, but it definitely has lost its appeal. Yes, it was shut down AGAIN this year altho apparently it was because of a fight or something so. All I know is that the music stopped and people started leaving, plus it was cold no ass that night (in FRIGGIN May!!!! (it's outdoors)), so there really was no reason to stick around. Steups!

Something happened that night and it's something that I've noticed here and there. Anytime I go to a party in the Soca Scooter, I lime on the outskirts so I'm not in the middle of the crowd. There were tents along the perimeter of the place and we were liming under one. Of course, regardless of where I am, people will walk by and 8/10, someone will walk into SS (and throw down my drink - GRRRRRR) and then look down and walk around.  Well this time, the gyurl walked into it and it was like she got vex that she had to walk around.  It actually was a few of us standing there at the time and when Raj reacted, I just knew they would come to blows. I heard her scream, "she's in ah fcuking scooter, where u want her go?"  LOVE my friends :-)

I also stuck to my decision and stayed home on parade day - honestly? I surprised myself; I didn't think I'd do it. From all accounts, I didn't miss anything so I believe that's it for me and Atlanta parade.

The weekend in pictures…

Cooler fete…see my jacket?  in MAY!!!

Soca Scooter

I'm taller than them :-)

Masquerader #1

Masquerader #2

Bussin ah wine in Sunday Morning

Us @ Sunday Morning

It's (almost) That Time Again

Fete of the year!!

Cooler fete is 5/17.  Is in the same place as last year so does that mean Dekalb County's Finest Morons/Assholes will leave us alone? They didn't shut it down last year so there's hope. This year should be better than ever - it's the 10 year anniversary so there's a top DJ (imported straight from Trinidad) AND a BOSS artiste.  I plan to go get my haircut and GO STRAIGHT BACK HOME! Will do my eyebrows on Friday.

Scooter is...

a "problem"? - **GASP!!!**

This year, I'll b here for Atlanta carnival on Memorial Day weekend.  I was actually thinking of going somewhere (last year I went home) but u know what they say bout the best laid plans so...when I realized that I'd be here, I had to make a decision. To go on the road or to not go on the road???

Hmmmm 2 years ago, about 3/4 way thru the route, the scorching sun and glorious heat started taking a toll on my body and my fingers started slipping off the scooter controls - that's when G started driving and...well...remember what happened??? Lol. Do I want to put us thru that again?!? Well, barring that I can go on the truck - I've done that many times before (Miami, DC)...I can more than do it right here in Atlanta.  But...do I feel like doing that this year? Quite frankly, I don't really think the parade in Atlanta is that great so...but I am a carnival jumbie so I decided that what the heck, I'll do it...but then I started thinking..."Uh oh. What about the scooter?" The DJs are okay with me on the truck...but the scooter??? I can't leave it behind cuz we hadda get from wherever we park to the band so I'll need it. It's bad enuf that they'll hadda haul my ass up on the truck but now I'll hadda ask them to haul the scooter up too? (If there's even room for it!)

I decided against it. I don't feel like asking anyone to put me and my motorbike (yes.  OB calls it that sometimes- LOL) on their truck. So for the first time in how much ever years (ever since I discovered Atlanta carnival?), I'll b liming, drinking (INSIDE A HOME), waiting "patiently" for everyone to reach back after everything done. I hope I make it.

You'll see how well I handled sometime next month when I write that post!  Lol!

Guest Post by Hannah Taylor

I was approached by Hannah Taylor, "a healthy-living enthusiast, wife and mother of 5 fur babies who runs My Claim Source (a website dedicated to offering free health insurance resources)" to write a guest post here.   this was new to me - eh?  Noone had ever approached me before, but once i looked into it,  i agreed.  below is the post from Hannah…enjoy!

Happy or Healthy?

Excellent health and happiness have somewhat become the universal gist for toasts and best wishes for many occasions. While it's true that good health fosters happiness, can we say that happiness leads to greater health? What would you rather be - healthy or happy? 

Why choose when you can be both at the same time?

Do Laugh More

• When they say "laughter is the best medicine", they don't just mean that figuratively. Quite literally, it is the best medicine. Laughter boosts your immune system, eases your fear and anxiety, relieves stress and improves your mood. Plus, it's free.

Do Spend Time in Nature

• Regular contact with Mother Nature will do wonders to your health. Enjoying time among trees and in nature can help reduce stress, lower blood pressure, boost your immunity, improve circulation, and enhance your sense of well being and relaxation. Remember, fresh air is good for you.

Do Eat Well

• Clean eating is essential in maintaining good health. Eating various ranges of healthy foods ensures that our body gets all the nutrients it needs. It can reduce our risk of various diseases and help us feel our best. Healthy does not mean boring and bland. Cooking and eating well will give you the opportunity be creative and have fun with your food.

Do Sleep Well

• Getting enough quality sleep is important to our overall health and well-being. When we sleep, our body heals and restores itself. It's relaxing and rejuvenating and it keeps us on our toes and doing our best.

Do Exercise Regularly

• Physical activity and exercise are good for you. There are lots of fun ways you can stay fit without going to a gym - run, rock climb, bike, play an instrument, drum on the kitchen counter, play tag with your children, walk the dog, swim and the list goes on. Staying active improves endurance, strength and flexibility. It helps us look and feel better everyday.

Whether you love dancing or treating yourself to that occasional square of dark chocolate, your path to better health and wellness can be fun-filled and doable. Getting healthy for more years in your life is sometimes just a matter of putting a smile on your face and a little spring in your step.

thanks Hannah for this…these are things we all (sick or not sick) can benefit from!

Lent and...

It's over and I failed miserably. I ended up forking over $17.25...sm - was it really "miserable"? Definitely was a failure!  There's something about cussing - sometimes, it really drives your point home and is completely necessary!  One of the most painful things that I (and one or two people close to me) have had to endure is a cane falling on my toe/foot - seriously, it hurts like hell. Once or twice, it happened during lent...I screamed out the "F" bomb and then when it occurred to me that I wasn't supposed to b cussing, I'd say,"shit!". So right there I'd hadda give up .50c one time. STEUPS!!! Anyway, it's done so I can cuss freely now if I choose - and I choose :-)

The other night I dreamt AGAIN! UGH! This time tho, I was at an Expo of sorts on my scooter and for some reason, I got off to go do something.  When I got back, it was COMPLETELY stripped. All that was left was the shell (it wasn't like my actual scooter so "they" were able to take parts and leave back a shell)...no wheels, no seat, no cup holders, NOTHING. I had the shell.  I couldn't believe it!  I woke up soon after - I think - but that in itself was a FRIGGIN NIGHTMARE!!  lol I eh go lie, I've actually had a thought of driving it to my car, leaving it parked in the deck and heading out but that was a fleeting thought and something that I'll never ever do. If I'm feeling out of sorts and I'm by myself, I'll just stay in.  I'm not sure what I'll do if I get back and it's not in the same spot - just thinking bout it makes me ill!

Anyhoo...as you were, I gone so!

Stacey

The Walk (in pictures)

We happened upon this straggler at the start :-)

Coke's newest model

LOVE!!

I don't have one of mine…but I know you can figure it out

Sprayed my hair again

The kiddies

Seasoned walkers

Bank of America representin

Orange mohawk

This year i had a partner in crime

Alex gave me a flower

Jammin dong d road

We made it!

d Limerz Crew

He was jealous of my scooter so he had to get one too!  his was a Mac Daddy scooter tho…we raced - i lost :-)

EVERYBODY wants a scooter!