Therapy finished last week, I’ll be more consistent once again.

i don’t question “why me?”  Quite frankly I don’t remember when/if I’ve ever asked that question.  The question I really want answered is “why multiple sclerosis?” I really wish I could pinpoint something I did/somewhere I went/something that happened in my past that could explain why I have my wretched disease, but no. No explanations, no answers…sigh. Allyuh tell me how strong I am and how much you admire me because of how I handle things and, I’ve said this before, I’m not putting on a show for that praise, I really do handle things well (at least I try to) – I eh go lie, I sometimes amaze myself at how I handle things.  Well…all that strength came to a crashing halt some Fridays ago.

truth be told, I haven’t had a bad day in a long while, so one can probably argue that it was time I s’pose. It was the week after labour day (sept 4) and it all stemmed from a mix up with the delivery date of one of my medications.  It’s a twice a day tablet that is specifically for ms patients’ walking issues. Every month, I speak to a pharmacy representative and we agree on the delivery date and every month like clockwork, it’s delivered on said date.  Well I’m not sure what happened and it didn’t come as I expected and when I called to find out what was going on, I was told that it was coming 4 days later. That news was no good, I had 2 days of pills left. As I said before, this is a twice a day pill that’s specifically for my walking and one time years ago, I went down to one a day just to see if that dosage could work and I discovered that the pill actually also helped my overall good feelings and 1 daily wasn’t cutting it. So here we are that week and I have 4 pills for four days. Shit! As “luck” would have it, I’d forgotten to take a set of pills sometime that month, so I actually found one more. So for that week, I took one pill a day and I was coping – or so I thought.

that week was leading up to an event that happens annually here in ATL that pits the men in our Trini community against each other to see who “han sweetest” in the kitchen. It’s a competition that’s been run by AuntyP for years and it eventually morphed into a part fund raiser for the MSCA on my behalf. It really brings our little community together and now in these times of social media, all week long I was tagged in comments and pictures and the pekong amongst the competitors was hilarious. That Thursday, in the midst of all the ole talk, a few people were very complimentary of me and reading what was said made me smile – gave me warm and fuzzy feelings, if u will and really lifted me up. Looking back I realised that my funk had started that Thursday afternoon. I really needed those comments right at that time.

the pills are usually delivered to my front door. Don’t u know it, that day UPS left it in the leasing office so I had to get them. The scoots to the office and back were uneventful so I’m not sure what got to me but in that moment when I got back to my apartment and opened the package, all my strength, positivity, “glass half full” energy vanished…shit was just too unfair and I was on the verge of tears. I was angry, I was sad, I was upset, I was despondent, I felt hatred to the MS and I can go on.

It was the middle of the day though…I had to get back to work…

A few hours later, after having spoken to Learls and a few others, I was almost back to normal.

I’m fine these days but MS still sucks!


Lyft Experiences and…

every time I request a car, I think I’m taking a chance because yuh just never know who/what I’ll encounter. I used to be nervous but now? It is what it is so I’ll deal with whatever curve ball I’m thrown. I must say that I’ve been lucky because there was only one time that I saw a driver eye the scooter and I just knew that he was saying in his mind, “what the?!?” and turns out that at the end of the ride, I actually rated him a 3 although it wasn’t because of how he treated me. I always curse when I see that it’s an SUV coming because my getting into one of those is neither pretty, graceful, ladylike (all those kinda words) nor easy. It used to be that I would cancel the request if I got one but now I cyah bother so again…I just deal with it. So there was:

– Chick A: She took me to a store but I only had to stop off there before heading where I really wanted to go. On the way there, I kept thinking that I wish I had my walker so that I could just “run in” instead of having to mess with SS that would take so much time and so when she said, “you want me go in and buy the item for u?” I could have reached over and kissed her (I was thinking that too but I sure wasn’t bout to ask).
– Chick B: she said, “don’t worry, take ur time. I understand completely cuz I have MS and struggle too sometimes.” Before I left her I apologised for sounding so excited when she told me that she has MS. My reaction (“oh really?!?!” quite excitedly) certainly didn’t mean that having MS was a great thing; it’s just that I doh run into a lot of people who have it too.
– Rhonda held my hand, gave me a hug and said a prayer for me before I scooted away.
– Wanda had an SVU and as they say here in the south “bless her heart” because after I told her about my issues with getting in, she insisted on lifting me in cuz “she helps her sister all the time”. I was skeptical but hey, who am I to judge? After she raised me about an inch off the ground, we had to change tactics.
– As you know Ron needed his own post.
– Fella A also had an SUV and after my “getting in” spiel he said, “would it be easier if I pick u up and put u in?” He picked me up threw me in and we were off…easy peasy.
I’m sure there have been more I can talk about but I’ll stop now and hope that my experiences continue to be on the up and up.

today I’m just ole talking…My AC stopped working Saturday night.  I was fine Sunday all day but Monday morning when I woke up to go to work? not so much…steups!  it’s hard enough trying to explain what my body feels like under normal MS circumstances but I really hate when I have to call my manager to say that “I’m not feeling too well”…oh and by the way, I suspect it’s because my AC stopped working and the MS doesn’t like heat.  I know that people just don’t really understand and I probably sound like a flake.  by the time I actually logged on, I called to further explain and really tried to drive my point home. He was sympathetic and said the right things but did he really get it? I dunno…altho at the end of the day does it really matter when he has supported me thru it all thus far?  so the maintenance guy came to look at my HVAC unit and he had to move 2 things to get to it and he didn’t put them back. A number of things are specifically positioned in my place for a reason – it’s mainly either so that I can easily reach the item or so I can easily walk by without tripping.  I know if someone doesn’t know, is not fair for me to get vex but when things are not in the right place, it irritates me no end and it didn’t help that I wasn’t feeling my best.

I wrote those last 2 paragraphs on Monday. I’m editing and finalizing today (Thursday) and I’m in a much better mood – Monday certainly was not a good day.  My AC is still not fixed but there’s a portable unit in my bedroom so things are good in my world and the MS and I are in balance and on good terms with each other.

Allyuh enjoy yuh weekend!

5 Additional Things I Couldn’t Live Without

somehow I ended up reading this post the other day and realised that I need to modify the list somewhat. Those 10 were in no particular order back in 2012, but there are some items that are still quite relevant today. They are: My  Inner/Outer circles, alcohol and my AM/PM pill boxes (I don’t take that many pills but without those things I wouldn’t be able to keep up with what I’ve taken and when and I’ll be up shit street regularly).  I hope I never have to experience life without any of those – nuff said. fast forward to 2017 and here are my additions:

My Life Alert Chain
I didn’t want it and was forced to deal with the fact that I need it. I started with a bracelet that of course, I’d forget to put on but these days I wear a chain and it’s somewhat embarrassing (mortifying actually), because sometimes I go out with the damn thing around my neck and I can safely say that it goes with absolutely nothing I wear. Like I’ve said before, I’ve come to terms with the fact that it’s a necessary evil so ugh! whatever! I am happy to report tho, that I’ve never actually had to use it (knock on wood) and the one time there was a misunderstanding, responders were there in 2 2s and the process worked like a charm.

Look closely and u’ll see it swinging round my neck

Soca Scooter and Bumblebee
I’ve actually had dreams of not having them handy or their being damaged/destroyed…that should be rewritten as “nightmares”. I cannot imagine my life without them.

My walker
The first installment included my canes; now it’s my walker – sigh!

Speaking of walkers, my walker tray
When I walked with my canes, I had a free arm/hand to use as needed.  Well with the walker, no hands are free. At first I used to use SS in my apartment when I had to carry food (anything really) but I needed to cut that out as it limited my walking. I went to my trusty Amazon (I am an amazon old ‘ho) and started searching and of course, there it was – a walker tray (it still amazes me all the things available “out there”…one jes has to start looking). Great buy and best money spent …that month.

The decision to stop driving was one of the most difficult ones I’ve ever had to make – I still miss driving to this day. My not driving meant that I was just about completely dependent on others and that wasn’t something I wanted to deal with at all. I remember how nervous I was the first time I used Lyft (Hannah was my driver) and how anxious I was about people pulling up and seeing me in SS. Now, nothing fazes me and I’ll deal with whatever situation presents itself (one day I’ll tell u about my getting in the various SUVs – LOL). I was able to reclaim so much of my independence using Lyft that I’m not sure how I’ll handle it if the company ever goes under (I eh really feelin Uber). I’ll be forever grateful to T-ster for suggesting it.

I think that’s it for now. Special mention goes to my bionic foot but I can,  and do, walk without it so it can’t be a “live without” item.

In other news, I’ve been on the PT waiting list at Shepherd Center since March. They called me last week so I go back to PT & OT later today. The last time, they discharged me after 6 sessions, so we’ll see what happens this time.

Anyhoo, allyuh hol’ it dong…I gone so

Life is too Short

i can’t believe this has happened again. I returned from my vacation and learned that 3 people had died. One was my favourite radio personality from the trini radio station I listen to regularly (he was younger than I), one person lives here in Atlanta and was one of the older Trinis who welcomed us into their homes years ago when I was a starving student and then there was Carlet. I met Carlet in primary (elementary) school; I think we were about 9. Over the years we didn’t stay in touch but whenever we saw each other, we would lime for a few and catch up. She was battling her own disease but you would never know it because she was ALWAYS so full of life, very positive and ALWAYS smiling. Goodbye my friend…my condolences to all those who loved her. I saw the following posted on her wall…

Speaking of making my life the best story in the world. I went to Barbados for vacation and had a fantastic time. One of the things we did was take a catamaran sail along the west coast of the island. Now Barbados, like Trinidad, is not the most “Stacey friendly” (read accessible) place and when we pulled up by the dock my cousin had to go inside to see what accommodations could be made for me to get on the boat. As she went inside, I got out the car and started making my way over because I wasn’t sure how it was going to happen but I knew that it couldn’t happen with my sitting in the car. There are only 5 people whom I would actually ask to lift me up to take me somewhere cuz they’ve each done it before and quite regularly too – I know I’m not the heaviest person but I certainly do not go around assuming that someone would lift me up if I asked. As I was walking to the dock, a guy came out and I heard him say, “yeah. We can pick her up and take her in”. He went back inside and came back out with another who scooped me up like a rag doll and took me straight on the boat without a second thought. Gavin, the captain picked me up and Reynaldo was his first mate.

the trip included 2 stops – the first to swim with turtles and the other to see 2 ship wrecked boats that are sunk off the coast. As everyone got off and went swimming with the turtles, Gavin told me that he’d take me out at the next stop – I was sceptical, slightly afraid…I am on that (now) self imposed ban from the ocean after all – but how could I say no to that offer. I’d certainly have to put all my trust in this man I didn’t know but could probably assume that he knew exactly what he was doing and signing up for. What the hell? You only live once…I have a a short clip of  our getting in the water but alas, I am unable to load it for u.

The next stop was for lunch and fellas with jet skis approached. I remember looking at them and thinking, “sigh…if only.” I couldn’t see a way that I could end up on a jet ski at all. My eyes made 4 with Gavin’s and I guess I motioned or mouthed something to him cuz he indicated  that getting me on the jet ski would be lil tricky (steups! – just as I thought). 5 mins later, I heard my name, looked around and Mone was calling me over. The guy whose jet ski she was riding was happy and willing to get me on.  I eh go lie, it took about 6 men to get me on. Reynaldo was in the water holding the jet ski steady near the steps of the boat, Gavin was holding me under my arms with his partner jostling with my legs (because u know they weren’t working on their own – especially under all that pressha), one was swinging the legs where they needed to go and finally I was on. Fella jumped on behind me and we were off…

Was great – that day was certainly the highlight of the trip for me. When we docked, Gavin took me back to the car – no questions asked; he was wonderful…the entire crew was.

aye aye captain!

Take your life and make it the best story in the world. Life is too short for regrets and we get no “go backs”.

That Samuel-O’Brien Chick!

Indulge me…I going and toot my own horn a lil bit.

it still amazes me after all these years that I have such a positive attitude about having MS. It’s so not like me; I’m usually so pessimistic about things. Maybe deep down somewhere I knew that my outlook will make it easier for everyone around me to cope? I know they feed off my energy/feelings/outlook. I was reminded of that last week Saturday while I was talking to one of my aunts and she was talking about getting old (in fact, for years she been telling us young’uns not to get old because it is in fact a bitch) and she said, “u are amazing…how u deal with everything. It’s because of ur attitude that we can be positive about so many things.” It eh easy trust me, but it is what it is, wha ah go do.

from the moment I was diagnosed my doctor always encouraged me to exercise…that’ll help things he said – years ago it was thought that exercise was not a good thing for MS patients – of course that train of thought is no more. Back then I hated the gym, sweating, exercising, weights…all those gym things. Slowly but surely over the years that has changed and now I actually like working out. Never in my wildest dreams did I think I’d ever get to that point but here I am. Now I certainly eh no gym rat and there are days when I can do without it but I like working out. Problem is, I can’t go by myself- well I could but why tempt fate; u know that I’ll be moving from one machine to the next and will end up on the floor! Enter Spree – my personal trainer. we’ve been together for the past year and a half and she’s talked about how nervous she was in the early days. We talked on the phone and I told her that I can walk but I’m in the scooter…I have MS…blahblahblah. She was cool and said yes no problem but was a bag of nerves because she didn’t know what to expect/couldn’t figure out how we’d be working out etc.

i think from day one I put her mind at ease though. I told her from then that working out was no problem for me. In fact, I’m willing to try any exercise or machine. If while doing it, I take extra long or we realise that maybe this isn’t a good idea then we know that maybe we shouldn’t do it again. (In fact, a dream I have is to start doing pull ups but not sure how we going to get me in position – but I know that one day we will try to make it work; that may be a story for another day. who knows!). Her biggest fear of course was that I’d fall “on her watch” and so the day it happened and I kinda dragged her down too (as strong as she is, she was no match for me!), she was mortified…me? Not so much – all in a day’s work…in fact allyuh know I started laughing especially when I realised that yes I pulled her down but we were both just fine. She also feeds off of me…she knows that she can throw anything at me and I’ll figure it out as we go.

i don’t need reinforcement but it’s always nice when anyone, including those who don’t know me, say encouraging things to me. I’ve had strangers in every gym at which I’ve worked out tell me that I inspire them and give them the strength to come out because if I can come workout, then they have no excuse whatsoever.  It tells me that “hey! it’s not all bad right?” and clearly I must be doing something right.

Hopefully, I will be able to maintain my positivity/upbeat outlook and my wretched disease won’t throw me a curveball that I can’t (or don’t want to) handle – time surely will tell.

P.S. I’ll be out of pocket next week so I sure won’t be posting anything.