The Inner/Outer Circles & MS

“I have a circle, a circle of best friends, a circle of bredrens Yeah!… (I) have the best circle, the best circle around, (I) have the best circle in town” Kerwin Dubois – Circles 

MS doesn’t only affect me…it affects everyone around me as well.  I always make decisions with my inner circle in mind because a lot of what I do could impact them as well.  I’m not a burden to anyone (or at least I don’t think I am ;-)) and anything that I can manage on my own, best believe I do it. Those times though when I do need help for anything, I know that I can count on any one of my friends at any given time. I’ve observed over time that that also extends to other people around me. I don’t party or go out as much as I used to and that is not only because of the MS – at times I just feel that I’ve been there, done that so I have no desire to put effort into going here, there and everywhere- these days, it’s all about quality not quantity for me.

One of the few times I make the effort every year, is to go a rooftop breakfast fete. The issue with that rooftop though is that there is no elevator. I have a few friends who will pick me up and carry me whenever necessary without batting an eye but on the rare occasion that none of them is around, we’ve actually asked other folk and they have always been happy to help. Asal’s response to my “but Suite Lounge has no elevator” is always, “doh worry. We go find somebody to take u up”. All of the inner circle knows that the legs need to be manhandled when I am struggling because if not we would take 10x as long as necessary to go wherever/do whatever. If a stranger is helping me I tell them, “just do what u need to do to get them where they need to go.  They are not going to break and u’re not going to hurt me.” If I notice that they’re still handling me with kid gloves, I tell them again and add “trust me! cuz if u take ur time, we’ll be here all day” and that usually does the trick. On the rare occasion that I have to hold on to someone to walk for whatever reason, I always try to make that person feel as comfortable as possible. I’m sure it must be a lil unnerving feeling as if you’re responsible for a handicapped person so I always try to be cognisant of what the person is going thru and do my best to make them feel at ease.

I swear I actually saw terror on an old friend’s face before. She’d never helped me and the bad thing was I just kept yapping and yapping – completely forgot about trying to make her comfortable.

I’m very open about having MS so I always assume everyone knows. I guess knowing about it and actually seeing me walk or in the scooter are 2 different things and I ran into an another old friend who hadn’t seen me in forever. Although we were in a carnival fete, his tears flowed freely because he just couldn’t handle seeing me that way. I assured him that things were okay and I insisted that he stop crying cuz there was food to be eaten and drinks to be drunk 😊

G always says that we need to make the MS work for us whenever we can.  She’s right…I mean the shit is here and it’s here to stay, might as well take advantage of it whenever we can. Last Saturday 4 of us went to a football match. We all had separate seats but they came to my seat first to make sure I was squared away before going to theirs. Because of where the handicapped seating is (I have some of the best seats in the house) there were many officials around manning the area ensuring that no one was congregating and there was a constant flow of people. They were moving ANYONE who stood still even for 2 secs, in fact I saw someone call a cop for a patron who ignored his 3 requests to move.  The match started and I realised that my 3 friends remained standing behind me…hmmmm, that’s strange but hey I wasn’t complaining. At half time, the 2 guys went for drinks and I said to Sdee, “what allyuh do the officials that they leave u alone for the whole time?” She said “girl. meehknow but I just happy they eh say anything.” P and K came back with the drinks and we kept limin and then it came up again.  That’s when I heard that P told the official who bothered them the first time that “they were my medical staff and had to stay with me“. I think I almost fell out my chair laughing with that one. It was a perfect example of G’s philosophy. P saw an opportunity for them to take advantage of the MS situation and he took it and made it work in our favour. If you ask me, this was nothing short of Pure Genius! the fact that the official actually believed him? not our problem!

Said by G telling someone a story:
“yeah, that boy was winin on Stacey and he almost mashup her foot.  She almost lost her foot and he almost lost his life”…the reason she said that was that we had to talk SD down from a ledge because he was ready to blowout the boy in question because he really made a kind of jackass move

Those are the kind of friends and family (near and far) I have – I’m lucky, I do have the best circle in town.  I know that anywhere we go/anything we do (even if I’m by myself), they always have my back and will provide me with support at the drop of a hat. They truly are amazing!

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 🙂