MS in the News and Some Ole Talk

So last week the FDA approved a drug that is the first of its kind.  In addition to showing promise in terms of disease progression for sufferers of the relapsing remitting strain of MS (RRMS: relapse when “shit goes crazy” for a while and then things settle down and u go back to normal), promising results were also observed in patients suffering from the primary progressive form (PPMS: things just get progressively worse over time and there’s no “back to normal” period). This is GREAT news for PPMS folk because until now, their options were nil as far as MS specific drugs.  It appears that it will be administered via infusion and supposedly, it’ll be a relatively “safe” drug wrt its side effects.  The drug works by targeting specific cells of the immune system that are thought to be those that damage the myelin sheath and wreak havoc (the “problem” cells if you will).  The medical research field has made progress in leaps and bounds in the past 12 years with respect to available drugs – this is good to see and may be promising for a cure?(a gal can dream).  I remember wanting to say, “lady u mad?” when she told me I had to choose from injecting myself 1,3 or 7 times a week.

Read more in this article

I’ll bet my last dollar that many people have been waiting (patiently or not) for this day so it really is exciting news.

A couple days ago, it occurred to me that I didn’t share one of the most important things about the new scooter, that from now on will be referred to as Bumblebee – of course…how did I take this long to think of that? (it really is a lil transformer…most people can’t believe how he folds up). Anyhoo, it’s actually a most embarrassing feature. When I reverse, he makes the loud (very loud) beeping noise. One day I was in a bank, a quiet bank, with about 7 customers in line – everyone was focused on what they needed to accomplish; u could hear a pin drop – and I was done with my teller transaction and couldn’t just drive away.  “GREAT!” I had to back up…BEEP! BEEP!! BEEP!!! smh..it’s bordering on obnoxious. 
ugh! but I love Bumblebee still 🙂

i also thought I’d share that I originally stopped blogging (on Blogspot) at the end of 2014 because my physical disability was in a downward spiral and it became more depressing to write than not (looking back, I realise that I’d probably been in a lil funk too).  As I came to grips with my worsened state, the writing bug bit me and I really wanted to write again, so I started back last year June.  I stopped again in October last year but that wasn’t my decision – I was forced to stop.

Remember I have issues with my left hand too, so I always use an iPad app to type the majority of the posts and then clean up, add links etc on my laptop before I publish.

Well last year, the Blogspot app I was using kept crashing so I had to make some changes and so, here we are. I say all that to say that I have no plans to stop again.

This time, I’m here to stay.

Lyft Driver we’ll call Ron

I cannot make this shit up!

(disclaimer: please realise that this post is not meant to offend anyone in any way)

A couple months ago, I requested my Lyft pickup and went outside to wait.  Every time the driver rolls up, I ask them to turn the car around and pull up alongside a certain wall because it’s easier for me to get in the car (less heartache and drama for me to get in a car behind the driver just cuz my right side is stronger). This time was no different and as “Ron” turned the steering wheel, I noticed something off with his arm…I paid it no mind. Well he turned the car around, pulled up and I started angling SS to back up, get in and be on my way.

Of course anytime I leave here, I’m in the scooter and that time I was using SS.  SS breaks down into 3 parts (the seat, the battery and the base and steering rod) to fit comfortably in a car trunk. I always get off and then talk whomever thru the breakdown process.

So…I angle to back up and get in the car and Ron gets out the car and opens the back door for me…that’s when I see he has a prosthetic leg and no forearms.

(in my head)…holy shit what the hell we going and do here??? Then I said okay Stacey, as a handicapped person yuhself, now is the time to remember how u would want someone to talk to u. (Out loud) I told him the usual about SS breaking down etc all the while wondering what the?!? how is this going to work?

…Ron was not bothered at all (at least not outwardly).

We started with the seat. Remember I said he had no forearms so he didn’t have the arm span to pull up the lever on the left side and pull off the seat at the same time but recognising that before hand, I pulled up the lever and he hauled that seat up like nobody’s business. Battery time…I figured that would be tricky (it has a handle to grip and its attached by Velcro) but I told him what to do. This time I was right…he was trying to grip the handle (I could see muscles by his elbow joint flexing) but because he had no hands/fingers, he couldn’t get a hold of it. Well wouldn’t u know it…after his third try, the doors thru which to enter opened and 2 fellas walked out; he asked for their help. Noticing the situation, they asked him if he needed more help so he asked them to put the rest of SS in the trunk.  Normally by this time, I would already be sitting in the car  but that Saturday morning was anything but normel, and as it turned out, they couldn’t fit SS in the trunk (naturally – that woulda be too easy!).  He asked me if I wouldn’t mind sitting in front and he’d put the scooter on the backseat.  I didn’t but I told them that I’d need to hold on to someone to walk around the car and then I’d most probably need help to get in the car (when I sit in the front, more times than not, someone has to swing and throw my legs in).  One of the guys was happy to oblige!

well by this time allyuh, I was laughing hell hard in my head at the situation.  if dem 2 fellas was anything like me, they couldn’t wait to tell someone/anyone this story.  it was nothing short of incredulous!  Finally… scooter, Stacey, Ron all in the car and we leave…and then I think, “oh fuck! how are we going to get SS out when we reach where I going” I mentioned it to Ron but once again, he wasn’t concerned.  Well as luck would have it, there was a man standing outside his storefront of the usually quiet, “nobody ever around” place that I was heading and as we pulled up, Ron called out to him for help onetime.

We got out and everyone went on with their day…I eh know bout Ron and dem 2 fellas, but I had a few good laughs every time I told the story that day, because the response was always something along the lines of “nah!”/”yuh lie”/”yuh kidding right?” but once again…

…I cannot make this shit up!

SS 2.0

I got it…Soca Scooter 2.0 is here.  As u will see he’s canary yellow – not what I wanted but I didn’t have a choice.  I really wanted the bright green but the company only sells those in the UK.  He’s very handy; folds up to the size of a piece of “carry on” luggage at the pull of a knob…it’s quite impressive to see it in motion.  originally I was going to give away Soca Scooter but I have discovered that I need to be a “2-scooter” person.  yuh see, SS2.0 is not very conducive to partying.  indulge me…

When I go to parties, I usually stand up for most of the time and it’s quite comfortable to do so on SS. additionally, it’s a seamless process for those who might want to buss a wine to do so with ease.

bussin ah wine easy peasy!
Unfortunately, SS2.0 is higher off the ground than SS and so when I do stand up, I’m unusually tall (for me) and it just feels weird – not a party scooter at all. At first, I was going to figure out a way to make it work, but I cyah bother – I’ll just keep the 2 of them.  As a result he will be stripped of “SS2.0” and will be “stax4.25”. Alas, he is not deserving of the “soca scooter” handle.

Don’t get me wrong, we roll all the time and he is my regular ride but when it’s time to fete, I hadda roll with old faithful – busted up as he might be.

new and improved (for the most part)
I mentioned before that his fastest speed is 1mph slower than SS (trust me, I feel the difference) but I’m slowly getting used to and over that.  of all my friends, ASal is the most attached to SS (she loves to drive him) and hasn’t quite warmed up to the new kid on the block so she was quite excited to learn that SS not going anywhere 🙂

Anyhoo, time will surely tell what bacchanal Stax4.25 and I will get into.

 

New Site

I’m here on a new site.  New site, new look but we limin the same old way.

Thanks to M, my prior posts were migrated (in fact, thank you Michael for helping me launch this new site!) so to pick up where I left off, the 2nd round of Lemtrada went off without a hitch, so to speak. there were no problems with the administration of the drug, no side effects (short or long term (thus far)), no problems…until I went back to work and got the news that my short term disability claim was denied -they said that they didn’t have enough proof to substantiate my being out (guess I should have taken my laptop in for some juice from the IV too). Allyuh eh serious – steups!!!

When it was all said and done though, I was able to use sick time (I hardly ever call in sick) to get paid so everything worked out.

Back to the new site.  Even tho the old posts were migrated, the links to my Trini dictionary are broken so don’t be alarmed if u’re trolling thru old posts and u aren’t able to get there.  Good news is that the dictionary is here so you can still get the definition if you’re totally confused.  Also, looks like some of the fonts are skewed but doh hold it against me – those posts were on a different platform.

This is going to be a short post – just wanted you to know I’m back up and running so we’ll resume shortly.

Lemtrada – Next Rounds

this is going to be a short post.

Just wanted to let allyuh know that Lemtrada Round 2 is next week Wednesday.  I got lucky.  when I found out that it was going to be in October, I made sure that it could be scheduled after Columbus Day so I wouldn’t miss Miami carnival again because of it.  turns out that was a non-issue though cuz I’m not even going.  anyway…

it’s 3 days this time so I’ll go in next week Wednesday – Friday.  remember, each day starts with an hour long steroid infusion and I truly believe the 5 days last year is what made me sick afterwards.  I’m hopeful that this time with only 3 days, I’ll be okay.  I’ve had 3 days of steroids before without issue, so why should this time be any different? right??? time will surely tell…Also, u know that my hero days are over, so I’m on leave again…actually don’t go back to work till the 24th.

so. I may be missing in action for the next couple weeks…if I am, you know why.