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.

 

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.

 

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!

 

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