Soca Scooter vs Bumblebee

I haven’t posted in the last 3 weeks.  it’s because I had a full house and just didn’t have the time.  Alas, all good things must come to an end so back to our regularly scheduled program.

it’s a good thing that even though I upgraded, I decided to keep Soca Scooter around.  Regular folk have 2 cars…I have 2 scooters.  That was actually never my plan though. I had organized to give away Soca Scooter but because of  timing issues I ended up having him longer than I thought I would, and that led to my discovering that he is better for (at?) some things than Bumbleebee. You know how cars of yesteryear seemed indestructible but the ones these days will crumple up like paper? same concept…I just don’t trust that Bumblee will be able to “take the jammin” like SS. I already talked about SS being my party/fete scooter and the other day I made another decision.

The area in which I live is very “scooter friendly”.  I’m off a busy major road with EVERYTHING (read stores/groceries/restaurants) that I need/want and there are sidewalks on either side so I can (and do) scoot with ease.  2 weeks ago, a sidewalk was completed on my actual road but I didn’t mind scooting on the road itself before, because as busy as the major road is, my road isn’t. I scoot up my road and can go right or left depending on where I need to go and if I need to go right, I go thru a gas station to get to the pavement of the major road; going left I go thru a bank parking, again to get to the pavement of the major road.

Well one day, a work day, I had something to do and I left my apartment and scooted up my road.  I didn’t think of the time because that day was the first of my vacation and who thinks bout time or days of the week while on vacation.  I was almost at the top of my road and noticed that there was a line of cars at the red traffic light.  that’s when it dawned on me that “shit! it was lunch time…more traffic on the road.”  No worries, by the time I get there the light would be green and the cars would have moved besides, I will be going thru the gas station and because of the position of the driveway, i’d be good. Well don’t u know it; I got there and the light was still red.  On top of that, the car that was in front the gas station driveway was angled such that I couldn’t get around it to enter.  I had to join the line just like everybody else to wait for the green light! Camry, Benz, Toyota, Stacey in Soca Scooter, Mazda etc…the ridiculousness of the situation did not escape me and of course I started to laugh – probably looked like a mad woman – that light could not change fast enuf!

The other day Obs and I went up the road and I used Bumblebee. I swear that since then, he hasn’t been the same (it’s too hard for me to explain). He still works just fine and he is the one I use anytime I’m heading out on my own or being picked up, but I think SS is more suited to handle the rugged terrain on the sidewalks in my neighbourhood. Part of my reasoning too is that Bumblebee’s platform is narrower and the center of gravity is higher than SS and I feel nervous driving over the slightest incline – especially at an angle – I have a slomo video in my head of my toppling over (this actually happened before…luckily I was with some alert, quick thinking and acting men) in the middle of a road somewhere.  Can u imagine how distressing/mortifying it will be if it were to happen if I’m by myself?!? so the verdict?

Stax3.25 aka Soca Scooter – fetes/parties/driving around the neighbourhood
Stax4.25 aka Bumblebee – liming/going out anywhere else

Blogger Recognition Award

thank you Alicia at Homes + Hammers (check it out for some DIY tips and tricks) for this nomination!

As part of the nomination, there are a few rules:

RULES TO FOLLOW:
1) Thank the blogger who nominated you and provide a link to their blog on your blog post.
2) Write a post to show your award
3) Give a brief story of how your blog started
4) Give 2 pieces of advice to new bloggers
5)Select, nominate and comment on other bloggers you want to give this award to

  1. How My Blog Started
    it was 2009 when I was pushed (kinda strong word) into starting this blog to tell my Multiple Sclerosis story.  I’d been diagnosed 4 years prior and at first I had to be convinced that the blog was a good idea but eventually it turned into something somewhat cathartic that I really enjoyed.
  2. Advice to New Bloggers
    Publish consistently
    Make the appearance/layout of your blog inviting so that your audience will keep coming back.  Additionally your writing style should make for your visitors’ “easy reading”
  3. My Nominees
    Astrid @ Lady with MS
    Opinionated Man @ Harsh Reality
    Nicole @ My New Normals
    Bryan and Brandon @ A Beer for the Shower
    Christe @ The Lesion Journals
    Elle @ Meanderings of the Mind
    Funmi @ Mangoisms
    Matt @ Matt’s MS
    Cheryl @ Plucking at My Heartstrings
    Janice @ Mostly Blogging

Atlanta Carnival – A Short Post

so this weekend was Atlanta carnival. MS has made me change some things and one of those as u know, is I doh play mas any longer. As much as I always try to “spit in its face” when it comes to sun, I have come to terms with the fact that fighting up with the sun while playing mas eh making sense. I used to be on the road in Atlanta but those days are no more. I continue to go as many fetes as I can and one of those is called “Sunday Morning“. It normally starts at 8am and it’s outdoors but my hope is always that by the time the sun really starts to blaze in all its glory, the party will be done (or at least almost done) so my suffering should be short lived. Well this year because of the weather, it started at 11…shit! Oh well…wha yuh go do? off we went.

At some point, while we were in the sun (of course), G insisted that I move under the “shade”. At the time I was still okay but I went cuz I figured maybe it wasn’t such a bad idea. I say “shade” because it was just pieces of fabric draped over the dance floor so I knew it wouldn’t really do anything and eventually, I could hear my voice getting softer and softer as I spoke (most annoying) and I could feel the energy slowly but surely drain from my body. I wasn’t as badly off as I have been in the past but it’s always very annoying to me to be in that state. I also realised that when I get like that people think I’m drunk (I’ve heard comments on a few different occasions)…Steups.

Back in the day before I started walking with a cane, when people saw me walking and holding on to someone, they used to think I was drunk…now, when I am a wiped out mess from heat/sun and people see me just sitting motionless with limp limbs in the scooter, they think I’m drunk – fucking MS! It also didn’t  help, I suppose, that it was an all inclusive party. If I was drunk, I guess I cyah get vex, but when I’m not it jes pisses me off.

anyway…fete was good…had a great time in spite of it all and I recovered enuf to go somewhere else after. if u ever in Atlanta for carnival u want to include it as a bong to/have to/must go fete for the weekend. All inclusive, reasonably priced and vibes cyah done. 

Lemtrada Progress

I tend to feel badly/kinda dislike (dislike is harsh wording) when I’m asked how the “new” medication is working. The reason is that I really don’t know exactly how to answer that question and I really do feel badly fumbling thru whatever answer I give. MS medication is not like ur typical Tylenol Cold, Aleve or any other OTC medication you buy – u buy them and within a couple hours, your pain/sneezes/coughs etc (should) go away. All the MS medications promise to slow down the progression of the disease and then there are one or two that claim that some disability may be reversed. So is it working? I don’t really know…I definitely hope so…I certainly can make an assumption that it is and I go with that. One thing that I can say with certainty is that I have no additional MS symptoms and no new worries…I still only have walking issues, weakness on the left side of my body and my left hand closes up.  If that is a measure of whether or not it’s working then “yup! It sure is working”. I don’t think that that is a stretch, so I usually go with that.

its weird. I’m “with myself” and see myself everyday – indulge me. Most times, I think that my disability is slowly but surely getting worse. I have good days and not so good ones – funny, the good are almost always on a weekend. On those not so good days, my movements seem much more laborious and in my mind, I move a lil slower. Well, within the past month or so, I’ve seen a number of people who are not in contact with me all that often and quite a few have remarked that “u moving very good” or “u walking better than when I last saw u” or “u moving rhell fast” and “u appear stronger than last time”. At first, I was a lil sceptical (wondering if that person really knew what they were talking about), but the more people who say it, the more I’ve started thinking that maybe I’m the crazy one. Don’t get me wrong, I still have some “not so good” days, but maybe overall I am looking better and so is the medication working? Maybe it is.

Lemtrada has a laundry list of side effects(of course) and I am constantly being monitored so that at the first detection of any of them, steps will be taken to combat (I finally finished the dose of antiviral drugs I was prescribed after the 2nd dose so I think it’s safe to assume that my immune system has completely regenerated). I do a skin check regularly so that I can report any abnormalities as soon as I notice anything. Every month, a chick comes to collect a urine sample and 4/5 vials of blood that are tested to make sure there are no changes with either. Every 3 months, she takes an extra vial so that my thyroid functions can be tested because it can cause overactive or underactive thyroid (this is just so comical to me because it just seems counterintuitive – I feel like if it must cause thyroid problems, it should jes choose one and run with it).

I will be remiss, if I don’t mention here that my veins always cooperate with her…they muhbe get tired of playing hide and seek all the damn time – no need for celebration every time she comes over and she’s usually done in a few minutes or so.

I have no more doses to take – there are only 2, so at this point, it’s just to wait and see what happens. The last time I went to the MSCA, my doctor talked about sending me for an MRI in a few months, so at that point I guess I’ll have a clinical answer to “are the meds working?” If I have no new lesions on the brain or spine, then I’ll definitely be able to say, “yes, it is!”…I think 🙂

Things I Learned as I Rolled

Last week was a weird one, hence my posting off schedule. Also, WordPress formatting automatically increases font size of bulleted items so don’t hold that (below) against me.

  • My dislike for bathroom mats is real! Huh? Yes it’s true. This is what happens:

I walk in to use the goddess and my foot, 9X out of 10, will get tied up in whatever mat is there.  I remember one time going in and there were 2 (double ugh! what the hell is the point of 2?!?) thick ones so my sneakers just kinda sank into them and once that happens, the feet eh going anywhere easily. Remember that my left leg/foot is weak, and once the foot gets stuck, I’ll be going nowhere fast. 2 Saturdays ago, I kinda lost my balance lil bit and I was standing on a bathroom mat. It wasn’t plush but the bottom surface was slippery so I started sliding. Had I been by myself, I would have hit the ground. I have NO use for them and I wish that I didn’t have to deal with them ever.

  • Handicapped vs disabled

Apparently it’s not a nice thing to describe somebody as handicapped in this country – they say that it’s offensive. Quite frankly I doh see the big deal. Handicapped is not being able to use part of your body or your mind because it has been damaged or does not work normally.  Disabled is impaired or limited by a physical, mental, cognitive, or developmental condition. Hell. I know that I have problems walking around and need walking aides, cyah play mas or buss a good wine when I ready – I have limitations and my body doesn’t always work normally.  I definitely prefer:

To be spoken “to” vs. spoken “about” as in Person A talking to someone I’m with, “can she walk?” hello! I’m right here…u can ask me
If someone asks “how” they can help or “if” I need help rather than just doing what they assume will help
When people actually listen and follow my instructions when I explain what will actually help

Being referred to as handicapped vs. disabled? cyah bother get my panties in a bunch over that

  • Sometimes figuring out how to get up is actually worse than falling

A fall is never a nice thing but I’ve discovered that sometimes (I guess if it’s a “good” fall) it’s more traumatizing to figure out how to get up than the fall itself (especially if I’m alone). Sometimes, it’ll even take multiple tries before I get it right. one time, I was alone and I had just unlocked my door and buzzed a couple into my building. I fell in the kitchen exactly where they would be entering…I didn’t even try getting up; I just stayed there cuz I figured I’d just use the help to get up.  Of course, as soon as they poked their heads in, I assured them that I was okay because I knew it would have been alarming to push the door and see me on the floor.

  • Not all “accessible” hotel rooms are created equally

I learned that the hard way.  I cannot climb into a tub so I need a shower stall (luckily some hotels actually have showers) or what they refer to as a “roll in” room.  Essentially, I need a room that someone in a chair needs so that I can just shuffle into the shower.  The first time I booked an accessible room, it had bars all over so I could hold on and stabalise if needed but there was a tub and that was of no use to me (the last time I tried to climb into a tub, I’d thought, “hmmm…I can do that – looks doable” – it wasn’t! It didn’t end very well and G2 had to buy a new shower curtain rod). Luckily, the hotel had a roll in room that I was transferred to so the weekend wasn’t shot to hell.

  • Pushing a door is better than pulling

This one is probably obvious but if a door has to be pushed to open, I can use Bumblebee to do the work – no probs.  If the door is to be pulled open, I could find myself in a pickle…unless the handle is on the left side. Did it ever occur to me what side a door handle was on before? Hell no! Now it sucks when the handle is on the right because of the angle at which the door opens and the position of Bumblebee. Writing this, I realise it’s hard to explain but trust me…it’s not an easy feat (nor do I look nice and/or graceful) getting thru a “door to pull” when the handle is on the right.

i’m sure there are some more things but I can’t think of any right now; maybe this post will have a part 2. Anyhoo, I hope allyuh have a good week until we meet again.