It’s Not Easy Being Me

The Trini way to say this is “it eh easy being me nah” smh…I tell u! Any time I have to stay in a hotel by myself, my biggest concern is “will I be able to climb onto/get off of the bed”. The beds tend to be so frigging high that I may not be able to do so.  Well, I went down to Florida last weekend and my plan was that I’d ask for a cot to be placed in my room cuz surely I’d be able to use the cot if I couldn’t use the bed (I refused to think about whether or not the cot would be too low and still cause problems). So at check-in, I told the fella my concerns and he told me that because I was in a “roll-in room”, the beds were actually not as high as the normal beds (a roll-in room is one with a flat shower that someone in a chair can easily roll in to bathe. I need that because climbing into a tub will not end well for me). He told me to check it out and if I couldn’t get in the bed, he would gladly send a cot up. I got to the room and wouldn’t u know it, I could get in/out easily – no probs…woohoo! Another of my needs (remember I’m high maintenance now), is a stable chair; there’s just no telling what can happen with my using a chair on wheels to do everything I need to do, so why tempt fate? They brought up a chair for me.

I was in a room with 2 beds and I told them to put the chair between the 2 beds…I was set. The second night I was there, it was time to go and sleep and I started climbing into the bed. I guess I misjudged something but the next thing I knew was that I was falling off the bed – I actually remember the night before saying to myself,”oooh Stacey, yuh kinda close to the edge here. Do not fall off this bed.” And so here I was the next night falling off the damn bed. It was fine…I didn’t hit anything or hurt anywhere so was no problem and I landed on my behind. The easiest way for me to get up from the ground is to be on my stomach and push myself up so all I had to do was flip over and restart the process. Well guess what? Allyuh believe that the blasted chair (that I asked them to bring in for me to make my stay easier) made the space between the beds so small that I didn’t have enuf room to easily flip over to get up – damned if u do, damned if u don’t. I couldn’t believe it…steups (of course I had visions of not being able to get up and all sorts of things). I had to do all kinda “manouvre-ings” to get out that space but I did it. It also didn’t take me as long as it could have but geez man is allahdat i hadda go thru?!?

All good things must come to an end so GHK took me to the airport to fly back.  Whenever I fly, I hang my handbag and my carry-on knapsack on the handlebars of my scooter and I hook my luggage on the arm of the scooter and roll it behind me. We pulled up by the curb, I got out and was already sitting on Bumblebee while she got my handbag and knapsack out the car to hang them onto Bumblebee.

Little background here: Soca Scooter’s controls are in front the handlebars (closer to me) so I have gotten in the habit of turning him off whenever we are stopped because it is very easy to hit the controls by mistake and take off unexpectedly (that happens a few times and u learn very quickly to always turn him off). Bumblebee’s controls are behind the handlebars and so his taking off by mistake is less probable so usually, I don’t turn him off (forgive the bad quality of pictures)

Soca Scooter – controls in
Bumblebee – controls out

 

 

 

 

 

 

 

 

…back to Florida.
I guess I was maccoing something because at some point, something triggered somewhere in my brain (actually it might have been GHK’s voice that I swear I was hearing in the distance calling my name) and I realised that I was moving. Waitaminute! What the??? Luckily my reflexes kicked into action (thankfully the MS has left those alone) and I was able to avoid driving off the curb because that’s exactly where I was heading. Thing is, I didn’t understand why the hell I was moving and it actually took me a few more seconds to figure out that maybe I should just turn it off. By the time I’d stopped – luckily minus drama of running over anything or anyone (in the airport on the way down, I’d rolled over a little boy’s foot but he didn’t react so I kept it moving) – I discovered that when she hung the bag over the handlebars, it also went over the controls and, well, Bumblebee was on so off we went! There was a porter standing there watching everything unfold and he must have figured we were crazy because of what happened as well as the fact that of course, after it all ended and everything (and everybody) was okay, we started laughing up a storm.

never a dull moment when I’m involved but then I guess if things ran smoothly, life will be lil boring huh?  Hol’ it dong till next week!

Happy Turkey Day US Fellas

today is thanksgiving day in the US…for the first time in a long long time, I’m doing nothing. I truly hate this weather and even though one can argue that it’s supposed to be a “nice” day, it’s under 70° and in my book, that’s cold (say what u want bout me). I’m actually waiting patiently to fly to FL in the morning…I wish I could bottle up some of the heat and sunshine while I’m there and bring it back.  Steups!!!

anyhoo, yesterday was my MRI. I had to do some rearranging and I couldn’t see Gilbert right after, so I won’t know the results till Dec 19th…in the meantime, I’m hopeful. I still am not experiencing anything new – that’s a lie, the “electric shock down my left leg” that I mentioned before has started back…not as often as before, but it’s happening. One symptom that had stopped after the Lemtrada infusions has also reared its stupid little head but nothing new so that should be an indication of no progression right? Who the hell knows…this is Multiple Sclerosis after all. I thought the MRI was going to last forever cuz I was getting my whole spine AND the brain. Well, it didn’t and I actually was amazed when the tech came and rolled me out the tunnel – I hadn’t even fallen asleep yet! As I was being rolled in though, it occurred to me that I didn’t remember the last time I’d had one done. The machine seemed to be extra loud or maybe my ear plugs weren’t in properly. I’m sure there is a reasonable explanation but I find that for a machine whose one job is taking pictures, it’s too damn loud. It goes thru cycles…sometimes sounding like a jackhammer, a hammer pounding a nail, a door slamming shut…jes crazy shit. Anyway, so 12/19 I’ll go and hear Gilbert’s verdict.

 

 

in other news…I made an adult decision earlier this year that I’m beginning to regret. I decided to go home in July for my high school 30 year reunion – absolutely no regrets there. My regret is that I decided to forgo Carnival 2018…whywhywhy did I do that?!? I just opened an email from the Phuket organisers for next year’s fete and well…SIGH!

making this a short and sweet update; not much else going on in these parts.

hol’ it down.

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!

That’s it For Now

so therapy’s over. They were 9 well spent hours each of PT and OT. The Shepherd Center and those who work there are amazing (I say this from my personal experience and I’ve heard stories from other people). Anyone out there reading this who is living with MS in the Atlanta area, if you can afford to wait the 2 month waiting period to get in, do it. U won’t regret it and it’s well worth the wait.  There’s also an MS Wellness program that I’d love to join but alas all the sessions/classes offered happen during the day so I can’t join. I was discharged 2 weeks ago but both therapists told me to do things on my own for a couple months and then come back. So that’s what I’ll continue to do until my insurance company puts their foot down.

The very first PT visit started with an evaluation that included a 6 minute walking test and at the end of those 6 minutes, I’d taken 153 steps. During the last session, we reevaluated and in those same 6 minutes, I took 225 steps. I also tested better in some of the strength tests that Ian had done before. Yay!! Improvement is great although i eh go lie, a little part of me was thinking that maybe it was just a better day for me plus the day before had been leg day in the gym – hmmmm…there’s that “glass half empty” person I know. At the end of the reevaluations Ian said, “well. U have 20 more minutes…anything special u want to do?” I eyed the Alter G…it was calling my name. Admittedly, I did much better in it too. The first time, I could only walk at a speed of .3 with some issues and on the last day I was at .4 with no issues. So it’s over for now, back in it sometime in 2018.

the last day…all zippered in

ive never been part of an MS support group or attended any meetings/support sessions. One time years ago, I enrolled in a 6 week wellness class that had been sponsored by the MS society and it just so happened that every single person in the class had MS. I must say it was good to be around people who knew and understood what I was going thru. Some of us tried to keep in touch after but that eventually fizzled to nothing. Rebecca (OT) suggested that I become a part of the support group that meets at Shepherd. They meet on the 2nd Saturday of every month so I went last Sat morning. Two interesting things happened.

* At some point in our discussion -it was only 7 of us, 4 of whom had a neurological disease and I was the only one with MS – the leader of the group said that she could hear it in my voice. Eh? That was a first…well she was referring to the tremor that I mehself sometimes hear. She went as far as to say that had we been talking on the phone, she would have thought that I had MS. Apparently she’s heard the same tremor from multiple MS patients…go figure!
* I met someone who hooked me up with contacts to start my new medication regimen – that of the alternative kind. Ever since medicinal marijuana became legal for some diseases (MS included) in GA, I’ve been telling myself to look into it and I have but I’ve also been dragging my feet (no pun intended). Well this chick was there who strongly advocated for its uses (she herself uses some products to manage her disease) and I knew that I had to stop stickin. I’ve left messages for both my doctors so that hopefully at least one of them will be willing to put me on the registry and I will be on the way. The company to which she referred me makes CBD oil products to be ingested as well as topical massage oils and lotions. I’ve already spoken to the owner…more to come on that.

alright…well I gone so. allyuh do have a great weekend!

P.S. – One of my calls was returned.  the MSCA is not participating in anything related to medicinal marijuana so they won’t add me to the registry.  fingers crossed that my primary care doctor will or else i’ll hadda figure something out.