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