Category: Random Thoughts

Wha d Jail

buh AA! How did I get so lucky that both my scooters were out of commission at the same time? Just my luck…I won’t bore u with the details but let’s just say that for a few weeks, I was afraid to drive:

* Bumblebee for fear that I turn the handlebar to go right and he went straight.
* Soca Scooter because he might have just stopped working mid-scoot… just writing about it is giving me chills. With no warning one day, he just wouldn’t start moving.  Luckily I wasn’t alone and was close enuf to my car to get in and head home 😳.

Bumbleebee I knew was going to be an easy fix, and happy to report that he is back in business. SS is another story. I actually know what’s wrong but it’s not an easy fix so I have an appointment to take him to a local repair shop in 2 weeks.  Perfect example of “when it rains, it pours”. There is good news though. My hibernation period started a couple weeks ago, so I have not gone stark staring mad because I couldn’t go out the road on SS. Had this happened in September/Octoberish, we would be having a completely different conversation.

i really hope that the cost of repair is reasonable because I’m not ready to give him up. Spree said, “oh no  that can’t be…it’s your “ride or die” scooter”. She was right…we’ve been thru so much together and between the two of them, I definitely feel more comfortable on SS – he’s more stable, he’s faster and then he’s just more appropriate for some things.  Anyhoo, stay tuned for news on that.

In other news, my primary care physician is open to adding me to the medicinal marijuana registry for GA.  The thing is that I find that he is really dragging his feet. If he doesn’t come thru, my Plan C is to (unfortunately) leave the MSCA behind and look into becoming a patient at Shepherd. There is a doctor there who is a huge advocate of MS patients’ use of it.  If I can become his patient, things can move along. I would hate to have to resort to Plan C but a gal has to do what a gal has to do and if the MSCA has decided as an institution not to pursue it as treatment for their patients, I eh vex but if I can become a patient of someone who will, it’s a no brainer to me. One time years ago, I smoked some weed to see if it would help my spasticity at all and it did.  I don’t know for sure that the medicinal marijuana (CBD Oil)  will help me, but I’m willing to give it a try.  With any luck it will and it’ll also lead to a decrease in dosage of (or even completely eliminating) the muscle relaxant pill I currently take. Yet another reason for you to stay tuned.

Ok…that’s it for today; remember you hadda come back for all my updates 😉

My Elite Group of Friends

I have an elite group of friends within my inner/outer circles. These are the ones who have “thrown me down”.  Of course no one has thrown me down, it’s just a joke. They were the “lucky” ones I was holding on to when my feet got tied up or I lost my balance or who the hell knew what happened and I went down. I’m not going to call anyone out except this person and if I get cuss, I’ll take meh cuss like a man because it’s all about showing my love 🙂

it was labour day weekend in the US (September 4th). G2 and family were here and that Sunday, we went up to lime by the man made beach in Lake Lanier. For whatever reason, we left the apartment early and while on the way, it occurred to me that “shit! I’d forgotten to take my 8am pills” and great! I didn’t even have them with me. Well. Couldn’t do a damn thing, I just knew that moving around might be lil tough. Wasn’t like I’d planned to go in the water anyway, so I’ll just plant my ass in one spot and I should be good. We get up there and truthfully the day was uneventful. I definitely felt the effects of not taking those pills but there was nothing to write home about…until it was time to leave.

I’d taken the walker and the scooter and I was actually walking up the shore to the parked scooter. When I forget to take those pills, taking a step feels like I have 500lb weights attached to my ankles and as I was walking to the parked scooter, I was becoming frustrated because between my feet sinking into the sand and no pills, it was so difficult just to walk a few feet. I asked Lumy to “walk” my left leg for me. Now, understand that I’ve asked people to do this for me in the past…essentially, they will pick up the foot and place it where it needs to go so that I can advance. It doesn’t happen often but those times when I’m having a lot of trouble and there’s a willing participant, I’ll ask for help to get moving. As soon as he picked it up, I knew it wasn’t going to end well. I felt my body lean to the right and I braced myself. I fell (what felt like) straight back…sure did hit my head…hard! There were a number of people around so I wasn’t on the ground for long but it taught me something for next time I ask someone to do that. Truth be told that wasn’t the first time that I took a tumble doing that (writing this made me remember that it has happened before). In the future if I ask someone to “walk” my leg in for me, I need to make sure that we bend it before they lift it. That was the problem both times…if my leg does its normal thing – be stiff and straight – my balance will be thrown off and the risk of plummeting will increase. Not fun for either of us, although honestly I think it’s more traumatic for the other person involved than it is for me.

all in all, it was fine…no bruises, no physical damage. Lumy might have felt lil bad at first but “all in a day with MS” for me. I can also file it away as one of those MS trial and error situations – a learning experience, if you will. If someone ever has to “walk” that left leg for me, I know exactly how to instruct them so there are no mishaps. 🙂

I gone so…allyuh have a great weekend!

Strength

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.

Lyft
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

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