I CANNOT Make This Shit Up!

Lemme preface this post by saying that I am tired of writing my excuses reasons for not writing, so I’ll just jump right in.

Anyhoo, I swear that I cannot make this up!

I am the proud owner of 2 mobility scooters, Optimus Prime and (the newly acquired) Max. I use both of them and they each serve a purpose altho recently I discovered that Max, while a nifty lil thing, is not the most comfortable for sitting for any length of time beyond getting where I need to go, and I definitely cannot stand on him. I had to go to Jamaica at the end of September and wouldn’t you know it, I couldn’t take either. Well, Optimus was in the shop and Max is just not comfortable or “party” friendly enuf, so I really did not want to take him. So…i had to rent a scooter – UGH! Luckily tho, the shop that was handling Optimus has scooters for rent, so I got one of theirs (“unfortunately”, they only had 4 wheeled scooters which didn’t make me happy, but I got over that fast). Got it the day before I left Atlanta and we were off.

Once I landed in JA, we had to take a shuttle bus to the hotel that was 2 hours away. I had already spoken to the wedding coordinator to ensure that there would be space for me and as it turns out, it was one of the big, coach busses so I was all set. They loaded the scooter in the luggage compartment and once again…we were off! 2 hours later, the bus pulled up outside the resort, the scooter was unloaded, i jumped on, turned the key and i heard a long beep. “No worries.” I thought, “like it’s in manual mode.” I looked at the switch and realised that it in fact, was NOT in manual mode. “hmmmmm”. It was at that point, that it occurred to me that I wasn’t hearing the “something’s wrong” alert; I was actually hearing the horn. It sounded like the horn was constantly being depressed and when I looked, the actual horn button was gone – I guess it had broken off in the luggage compartment of the bus. Ah shit! this had actually happened a couple of months ago with Optimus and the only option I had was to take him in to the same shop where he was at the moment. Great! I was in Jamaica! no scooter repair anywhere!!

For the next 4 days, EVERYONE knew when I was approaching!!! I’ll bet you thought that the thing couldna been that loud. Well, you’d be wrong…shit was loud and there wasn’t a damn thing that I could do about it. Noise pollution at its finest…the only time it wasn’t blaring was when the switch was off, and I did that as much as I could, but I still had to get around. Sigh! There is some good news, I didn’t get any complaints or incredulous stares until the last night, but by then miss h’A and I were over it and we didn’t care that the woman was most annoyed, had her fingers in her ears and kept saying/shouting something to us. What was funny was that for at least 45 minutes after I got home and parked the thing, I was still hearing the beeeeeeeeeeeeep in my head. A few other friends could have sworn that they heard me in the various airports where they were connecting to get back. The other good news? Bill and John at the repair shop didn’t charge me for the rental or the broken horn – I couldn’t beat that with a bat! I’ll take the wins whenever I can 🙂

Be back soon…

M.I.A.

I’ve been M.I.A. and I just cannot believe that so much time has gone by since the last time I posted – not sure where it went but I’ve had alot going on. I’ve said it once, I’ll say it again “the older I get the faster time flies and it sucks!” I actually had an idea for something else, but I’ll table it for now because I have to speak to this. First off, I’m not going dark again…I will continue to write and publish, I really honestly didn’t even realise just how much time has passed since my last entry.

This past Sunday was the annual “Men Who Think They Can Cook” event in ATL. I’m sure that I’ve written about this event before, but it was brought into fruition by one of the old heads here in our Atlanta community (she will kill me for calling her that, but it’s fine I’ll take meh cuss). I moved to Atlanta in 1991 at the mere young age of 19 and for the first 3/4 years or so, I knew very few Trinidadians and then one day I had the privilege of meeting this lady (I wish I could remember how we met), P. Ram. And all of a sudden, I was exposed to a Trini community that remains my family outside of Trinidad to this day. These people didn’t know me or any of the other students who came here to go to school, but they knew that we were young, students who left their parents’ homes and pretty much had nothing and that was all that mattered. They welcomed us into their homes, their lives and we became “their children”. Now that we have grown up, when we get together or see each other, it’s a beautiful thing. So much time has passed and it’s hard to fathom that they were around my current age when we first met…WHA?!? P. Ram is called Aunty P by EVERYONE…and I mean EVERYONE. She is a pillar of strength in, and the glue of the community and all she has to do is say something or ask for something and it gets done (she also has a nickname “Queen of the underworld”, but you didn’t hear that from me…heeheehee).

I don’t quite remember when she had the idea to start the “Men Who Think They Can Cook” event but she started making phone calls to all the men in the community and pitched the idea which was a cooking competition amongst the men. Each chef comes out with their food which is then sold to attendees and a portion of the proceeds is donated to a Multiple Sclerosis organisation on my behalf. It’s an MS awareness, fund raiser that is done because of me for me and it is very touching to me every, single year. For the first number of years, I told her to work with the MSCA since I was a patient there. I am no longer affiliated with the MSCA (story for another day…one of 2020 happenings) and so this year, I told her to work with Catalyst Sports. I was extremely happy when Gillian from Catalyst agreed and was available to come out to support as well. This is one of those times when the “old” old people, the “current” old people and the “current” old people’s kids come together and have a whale of a time eating GREAT food, drinking and limin for hours. I feel confident saying that everyone looks forward to it year after year.

I don’t usually say anything at the event, but this year I wanted to and felt that it was long overdue that I thanked Aunty P. and her organising crew, the chefs (repeats and new…in fact I believe that the winner this year was a newbie), all the supporters who came out and of course, Catalyst – meeting that crew is one of the highlights of the past few years for me. It is always overwhelming to see the support, feel the support that I have in our community, and I just needed them to know how grateful I am.

  • This year’s winner
  • Best Presentation, #1, #2
  • Organisers M and Aunty P, last time’s winner,
  • Catalyst in tha house!
  • trophy and all
  • winner
  • serious ting

(my)Life’s Ironies

I’ve said this many times on this blog and anyone who knows me or is around me can attest to the fact that there is always method to my madness. In my apartment, I have things in certain places for a reason. Yes it, depending on what it is, could be because it looks good there but oftentimes it’s because it’s easy for me to get to or, it’s being in that position makes my life easier somehow. Everybody keeps the small garbage can in their bathroom next to the porcelain goddess. I don’t. I remember years ago the parents were visiting and every night I went into my bathroom I’d find the bin next to the toilet and every night I’d move it and put it where I needed it. And then one night, after I’d moved it, Learls came in, picked it up and said, “every time I put this in the right place, somebody moves it.” I took it from her and said, “no ma’am. Every time I put this in the right place, somebody moves it.” She never touched it again. Always a reason for the way I do things and the places where I keep everything in my space.

Setting the stage here:
There is a stool in my bathroom. It’s where I sit to get dressed and organise myself when I have to get ready to do anything. It’s always roughly in the same spot. I went out Saturday and for whatever reason, as I was leaving the bathroom, I pushed the stool much farther away from its regular spot. Why did I do that you ask? Wish I could tell you.
I take a few pills everyday – 1 set in the morning and the other whenever I’m getting ready for bed. I can definitely tell if I’ve forgotten to take either set but forgetting the nighttime set is much worse. I am unbelievably stiff in the morning and getting out of bed and subsequent movements are no fun. As a result, I really try my best not to forget to take those pills.

Saturday gone now:
I went out and as usual, had a great time with the inner circle and J dropped me off a little after midnight or so. I parked Optimus in his spot in my office closet and walked to my bedroom. As I entered my bedroom, I made a beeline for my bed and then thought, shit. Pills. Every now and again when I’m heading out, I take them with me, but Saturday I didn’t – go figure. I turned around and headed for my bathroom and as I crossed the door, I got the strongest scent of soap or something in there that made me feel a little off. And then the nausea started and I could feel cold sweat coming on (I’ve mentioned this numerous times too – my issues related to ms are multiplied tenfold any time my body gets “out of whack”). There have been times in the past when I’ve felt sick; it’s like a wave of sickness (the best way I can describe it) because I feel nauseous and think I may end up throwing up and then 5/10 minutes later, the feeling subsides and it’s like nothing ever happened and I’m as good as can be. Of course, when it happens, I just want to sit and let it run its course – the last thing I want to be doing is, you guessed it, walking! Taking steps at those moments is the most difficult thing and of course, that’s what I was doing Saturday night. GREAT!

And guess what? Had the stool been in its normal spot, I would have gotten to it and been able to sit this thru. But it wasn’t – I’d pushed it back. I was leaning on my bathroom counter, willing myself to keep pushing forward and stay upright. All I had to do was take about two steps and reach out with a small lean and the stool might have been within reach but of course I was also afraid of what could happen if I actually leaned too. I could do neither. Eventually, my knees gave out and I went down. Beautiful! All in all, it wasn’t horrible, I suppose…it was a soft fall; I didn’t go crashing to the floor, I didn’t hit my head, no broken bones or bruises. Truth be told, the cold floor was also just a little soothing; the fall momentarily distracted me from the fact that everything happened because I was feeling sick. I eventually got back up (with help) and made it to the bed where I was trying to go in the first place had it not been for those damn pills!

All’s well that ends well. I can’t say what kind of inner strength I had prior to this disease but I think that it’s okay for me to say that I possess a herculean amount of it now. I think that it’s amazing I don’t cry or feel down more often, just having to deal with my entire situation and some of the shit that is thrown my way on a regular basis. Anyhoo, I gone so…hol’ it dong till next time.

Physical Therapy 2021

I walked…without a (traditional) walking aid!!!

Okay. So before I continue, allyuh wouldn’t believe what I’m about to tell you. Last time, I talked about the new really weird pain that I was experiencing and said that I was going to talk to Gilbert about it later that day. One of the things that I didn’t mention was that I’d also started taking ibuprofen one night because the shit really was painful. So i talked about it here and I told Gilbert about it and what has happened? The last time I felt it was that morning! The last Ibuprofen i took was that morning! Was talking to a friend and she said that it was a “reverse” goatmout…very weird but yes, no more pain. That’s ms for you I suppose. Go figure! Anyways, Gilbert said that it sounded like nerve pain because of how I described it, but he still found it odd because it started in my armpit. He said that he could prescribe a daily pill and asked me if I wanted medication; I said no. He suggested that I (do what I do for all things ms related) monitor it and pay attention and we will deal with it at a later date if we need to. Well as of right now, we don’t need to because nothing’s happening…here’s hoping I’m not putting goatmout on myself writing this!

On to PT. Of course, physical therapy in 2020 was out but by 2021, there were protocols in place, including some home telehealth visits and I completed 10 sessions. I’ve talked about Shepherd and its “toys” before and last year, they had a new one. I wish I had a picture, but I don’t so I’m going to describe this as best as I possibly can. It is a walking aid that is attached at the ceiling to a circuit that covers the circumference of the PT area so patients can walk around the floor. My therapist “encased” me in multiple harnesses (I may have looked like a cyborg) that were attached to and communicated with the machine at the top that was attached to the circuit. She input my weight, height and other stats regarding my disability into the computer and so the entire thing adjusted as I was walking to keep me upright and somewhat stable. The first few steps were practice steps to ensure that the whole thing was calibrated properly- it is supposed to keep me from falling after all – so I was using a walker as I moved. I knew that this was coming but when Taylor my PT, said “okay, leave your walker here; time to walk without it” I freaked out! I was so damn scared…but of course, I put it aside and let it go. I could feel the whole thing adjusting to me as I found my balance and I took a step with my right foot (figured I’d start with that one since it’s the good one) and everything was fine – no drama, no stress. Okay left foot time and the weirdest thing happened…nothing. Nothing happened; it was almost as if I didn’t know how to move the foot without having the walker in my hand – this is the only way that I can describe how I felt. I actually had to say to myself, “okay…pick up the leg and move it forward, you can do this” and make a conscious decision to do it; it simply did not occur naturally. I freaked out a little…just a little…but Taylor talked me off the ledge and I did it; I took the step. The more steps I took, the better it was and the next thing I knew was that I’d completed half the circuit. I was soooooooo excited. I know that it probably sounds like nothing, especially since I was really strapped in and attached to all sorts of things, but you have to understand, I haven’t walked without a cane or a walker since 2010 (or 08…I honestly don’t remember but it was 1 of the 2); at some point, I wasn’t even sure what to do with my hands. LOL! It’s hard for me to really convey just how excited I was but it really, really felt good. Found the image below online that is not exact, but it depicts the general idea for you – maybe when I go back this year, I’ll get an actual picture, or even better, a video. I’m sure that I’ve said this here before, but I sure am glad that I found the MS Institute at the Shepherd Center.

Anyway, it’s finally Wednesday – we’re almost on our way down on the otherside to the weekend. Stay safe out there and I’ll be back soon.

Stax

High Maintenance

I was never a girly girl. I didn’t need 2 hours to get ready for anything – especially when I had the “come to Jesus” moment and realized that hair on my head is overrated and completely unnecessary. I could be ready to do whatever at the drop of a hat. Anytime J told me that he was picking me up at 5 (and I learned that unlike a lot of Trinis, when he said 5, he meant 5), I was ready to jump in the car at 5. I wear makeup but it is not a shitload of gunk on my face and so the time needed to apply it is minimal. I could go on…but you get the gist and long story short, I was never a “high maintenance” person. That is…until now. Steups. I always say that multiple sclerosis has made me so damn high maintenance that it’s downright annoying. Everything has to be “just so” or “just right” for me to indulge/participate etc. I cannot do everything willy-nilly like I used to anymore – I’ve talked about the due diligence steps that I sometimes take before – not getting into that right now but the shit gets tired.

Sunday was the regular monthly bike ride with Catalyst. J and I usually go down together because he rides the same trail that Catalyst uses. It’s always from 10-12, so we get there at 10, he leaves to go do his thing and by 10:30, I’m “gearsed” up, on a bike (read MY bike) and ready to roll with at least one of the Catalyst volunteers. Catalyst has a fleet of adaptive bikes (hand powered, foot powered, upright, recumbent…you name it, they have at least one) and through much trial, error, frustration and a lot of cussing, I finally found the best bike for me – hence the “MY bike” description prior. It’s an upright, foot pedaled, nifty lil thing – it’s too low to the ground for me to get in and out of on my own but everything else is “just right” for me to get a good ride in. Last month, I did 3.5 miles and I was BEAT by the time I got home, but it felt so damn good. Anyhoo, Sunday was a little different because he was going to do a 60mile ride, so I didn’t get there till 11 and so, by the time I got there, MY bike was gone. Here’s where the high maintenance frustrations came in. My bike is compact so when I sit on it and start pedaling, my legs remain bent (even at the greatest angle); they never actually stretch out enough to the point where it’s difficult to bend my left leg (that likes to be stiff and straight out) and bring it back in. The first other bike I tried on Sunday was long and stretched out so you know what happened. I had suspicions, but figured I’d try anyway but after 2 rotations, that left leg straightened up and I had THE MOST DIFFICULT time bending it to bring it back in – I don’t even think I made 1/2 mile. Writing and describing the problems with the second one will take too much time and words but suffice it to say that I rode even less than the first. It was annoying, frustrating, depressing and I always feel bad for the volunteers with me, even though they have always been good sports about everything. I’m not going late ever again. Truth be told, I really want to put a “StaxBike” license plate on it, but I guess that is not acceptable and might be frowned upon 🙂

In other news, I’ve started experiencing a weird pain. and by weird, I mean really weird. I’m not trying to be dramatic here but imagine someone took the divider or compass from your geometry tin and jammed it in your armpit and then dragged it down your arm to your hand. It’s a jolt of pain that starts in my armpit and travels very quickly down my arm. I’ve never experienced anything like this before, in fact never any pain at all. The first time I felt it was April 8th (a Friday) and it happened once a day till the Sunday (odd). Didn’t feel anything again until last week but now, it’s happening multiple times throughout the day and even at night. At this point, it’s more annoying than anything else, course it’s painful too but I think that because it actually only lasts a few seconds at a time, I don’t have enough time to study the pain. I also can’t pin it down to my arm being in a certain position or figure out any kind of explanation at all, so I just have to suck it up and keep it moving – ugh! I actually have a doctor’s appointment later today so I’ll bring it up and see what suggestions he might have. Another MRI might be in order…is it a new lesion? If that’s the case, do I have to live with this? Geez…I’m not really looking forward to what he has to say I don’t think. Anyway, more to come I suppose.

MS sucks!

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