Multiple Sclerosis & Me

Back At It

It’s no secret that I absolutely hate cold weather and hibernate during winter. I go nowhere unless it’s completely necessary…if u think walking thru cold air is bad, try scooting thru it; it makes me angry. Not joke mad. Really friggin mad! As a result, I did not deem physical therapy a necessity at the beginning of the year and I waited until about Marchish to start the ball rolling to get on the waiting list to go back to the Shepherd Center. It was a long ass wait this year and when I finally got the call, I couldn’t get scheduled for my evaluation until sept 4. Once again, I’ll be going to both Occupational and Physical Therapies and the OTherapist is the same as last year. I like that cuz I feel like we can build on what we started last year and I don’t really have to explain stuff all over again. My PT is different but the old one is still there and actually got a promotion so he’s already filled in the new chick on what and how we worked together. I’ve already officially started PT and my first session of OT is later today. After the evaluation, I felt good about a few things w.r.t. PT.

– I was seen for 9 weeks last year; this year it’s only 6 (I take wins – big or small).
– Joy (the therapist) could definitely see/determine/conclude/all thosekindawords that my left side is the affected side and then she said that there was a little spasticity – further solidifying that using the CBD Oil was a bess decision.
* I know it’s made a difference, anyone who has had to deal with this left leg on a regular basis knows but to hear a professional say that there’s “a little” spasticity? WIN

Her primary focus over the next 6 weeks is going to be my balance. Last year I talked about all the “toys” at Shepherd and this year, because balance is going to be our focus, I’m going to be “playing” in the one that I never got to use last year because it was brand new and the staff hadn’t been trained on its use yet. It’s a balance somethingthingahmajig….can’t remember right now what it’s called but it measures how balanced I am when sans walker I’m standing still (eyes open and closed), how I use my body to get back in balance if somehow I’m thrown off kilter, whether I stay in balance while lines are moving in circles on a screen in front of me and the platform on which I’m standing is moving back and forth and a slew of other shit. During our first session, Joy got a number of baseline measurements and over the next 6 weeks, I’ll use the machine to train (the body and brain to work together to keep me in balance) and the goal is that my results will have improved at the end.

I’m also giving some thought to transitioning to Shepherd as a full time patient for reasons that I cannot share but I’ve put out some feelers and hopefully that will materialise soon. The MSCA has been good to and for me over the years and I’ll miss seeing some of the faces but a gal has to do what a gal has to do and at the end of the day I have to make the right decision for Stacey.

In other news, I hadn’t been rock climbing because of planned travel and well, life. I finally went consistently again over the past two weeks and geez, talk about kick my ass struggle. The volunteers who were with me Wednesday night were very encouraging and cheered me on as I went up the wall but I was disappointed in how I climbed. I made it to the top of the wall (on my own and with some boosts from the pulley system into which I’m strapped) but I took so long that I wasn’t completely happy. I knew that I was being too hard on myself but one of the reasons is that the nagging question “is it because my disability is getting worse?” is always floating around in my head – I always think of the worst case scenario. If I climbed this same wall two, three times before and now I’m really struggling, that must be it right? Common sense doesn’t always come into play at times like that – “maybe it’s cuz u haven’t climbed in a month and a half Stacey so u’re just a little rusty” nope. That thought never enters my head.

Anyhoo…that’s it for today. Allyuh hol’ it dong, I gone.

Grace

I’ve been missing. Forgive me; I travelled a lot in August then family in town the first weekend in September which included a holiday and a short week. It was a whirlwind and now September may as well be over cuz time goes by so quickly. Anyway, back to our regularly scheduled programme.

Two things still fascinate me even after 13 years of dealing with this disease….hmmmm, lehme say 8 years cuz I started using my canes in 2010. They are:

* When people accurately guess that I have MS
* Just how helpful people (read strangers) really can be

I remember years ago I was flying somewhere. I’m assuming that it was before I started using my cane and maybe before I started using the wheelchair assistance. Anyhoo, I was putting my shoes and shit back on after having gone thru security and the lady sitting next to me said, “u must have MS”. It floored me because you have to remember, back then it was a disease about which very little was known. It wasn’t like now when I swear I hear of someone being diagnosed every Monday morning – heard of someone just this past Sunday. When I said “yes how’d u know?”, she told me that her daughter had it and our movements were very similar. A couple weeks ago, the Lyft driver who picked me up was in an SUV. In the past anytime I realised that an SUV was on the way, I’d cancel. These days I cyah bother so I just figure it out and let the driver help me as needed (except for the time that saddist showed up in a Ford Tundra so I just sent him along his way – there was no way I coulda get into that!). Well after I was finally in and fella jumped in the driver’s seat, he said “MS?”…turns out that in a prior life he was an EMT so once again, he’d seen patients whose movements were similar to mine. It’s interesting for all the unknowns and different ways that it can affect patients, when mobility is the issue, our movements and coordination appear to be similar.

so then there was Ben who said, “oh. My mother has MS too”. He took me completely by surprise because he was the scooter delivery guy (the first time I’d ever used a scooter, it was a rental and that prompted the Soca Scooter purchase) and I was just standing in my garage. Wait…what??? How the hell do u know??? Turns out that he saw my tattoo that I’m “Fighting MS”…I’d gotten it the day before and completely forgot that it was there – DUH!

Dealing with having this disease has pushed me to be somewhat shameless in the sense that if I need help with anything I’m going to ask whomever is around. If you’ve been reading my blog all along u know that I used to be a “hero” or at least try to be (doing things on my own and not asking for any help). Well over time I’ve learned that asking for help is not a bad thing (and lehwe be honest, the help makes things move so much faster) and if someone offers to help, I say sure whether I need it or not. About a month ago I was at a bar and was waiting to use the restroom. It was a fairly large, single, ladies room and as the person walked out I asked her to hold the door for me to roll in – a door that swings out is much more difficult for me to manoeuvre than one that I can just push in – and that one swung out. If I remember correctly, at that point she asked me if I needed any other help because she’d be happy to assist however she could. Of course I said thanks but no thanks cuz I was heading to the restroom afterall. I don’t need help in there and well, this was an absolute stranger – hello! But then if I remember correctly, she asked me if I was sure and then said, “I can just come in to lock the door so u don’t have to worry about it”…I eh go lie, sometimes I do wish that I didn’t have to lock the door cuz rolling back and forth to do it can sometimes be a pain in the ass. I said sure. She stayed with me, she locked the door, helped me stand to move from the scooter to the goddess and back, grabbed the paper towels for me to wipe my hands and all the while, I just couldn’t believe what was happening. She told me that her name was Grace and for years she’d been helping her mother who is a paraplegic and so she understood just how a little help could go a really long way. It wasn’t a bar that I frequented and I never saw Grace again but for those 1o minutes we were in that ladies’ restroom, it was like we were best friends.

I struggled with sharing this story because I wondered if it was too much but in the end, I figured that I have nothing to be ashamed of and it’s a “warm and fuzzy” story about how selfless people can actually be sometimes. It’s Wednesday…Spence always used to say, “weekend start Wednesday”…allyuh do enjoy ur weekends!

Ah gone!

All About the MS

This post contains blunt honesty and graphic descriptions…apologies…it is what it is.

Long time I eh focus on the ms itself (I think I may have shared that I don’t capitalise this so as not to give it a whole lot of importance…kill me – it’s the little things).

Since Lemtrada I cyah lie, I’ve been stable – no disability improvement per se (purely as a result of Lemtrada) but stable. At the end of the day, guess I’ll take that and run with it. It’s very weird though, actually maybe it’s not weird it’s just multiple sclerosis. Before my first infusion at the end of 2015, when I woke up at night to pee, my bladder wouldn’t empty. I would pee, think I’m done and go back to bed and as soon as my head hit the pillow, I’d have to get up again. Steups…when it first started happening I thought that it was a normelnormel thing, only to find out that no; it’s the ms. I don’t remember what I started doing but I assume that I would stay on the goddess till the second stream came out. Post infusion number 1, that shit stopped. I can’t tell u just how excited I was to realise that I could just go back to bed without issue. For a year, I was peeing at night quite blissfully…and then came infusion #2.ugh! It started back.

was it coincidence? Hell I don’t know but it’s quite strange in my book. Steups. The other weird thing is that it only happens when I wake up at night and it’s always very urgent the second time around; I don’t experience anything close to that happening during the day. Talked to my doctor -dr. G, and he said that it probably happens during the day too but because I’m up and active I don’t notice but my argument to that is that during the day I go, I leave and I have absolutely no need to go back right away. One time years ago I’d shared my experience with a home health worker and she suggested that I press down on my bladder to help it empty completely. Well I started doing that and I must say it certainly helps – I still expel twice but the second stream comes out sooner. I would say that 95% of the time that I get up to visit the goddess at night I experience that and it is so damn annoying because all I want to do is hurry up and go back to sleep!!!

I know that one of the solutions to this is the use of a catheter; in fact I’ve heard of many ms patients who use them. Say what u want about me but I do not want to become one of those patients. thing is that pressing on my bladder will help it empty but it’s still not emptying the first time around so does it really make any difference medically? While talking to dr. G, he told me that apparently there are ways to train the bladder so that it empties every time; It’s taught in therapy with paraplegics…which reminds me, I finally got the call to go back to Shepherd for PT & OT. I go for my initial evaluation on September 4 so it’s something I’m definitely going to bring up with my therapist.

I cyah lie, apart from my forever present physical disability, that bladder issue is the only symptom of the ms that I am experiencing…well and my voice – although that is not a symptom but maybe a function of it. Of late I am so very self conscious when speaking, it’s not funny. I really hate to hear myself. But anyhoo, that’s been my ms experience over the past few months. Here’s hoping that I’ll be able to work on the bladder issues and nothing else presents itself for a long time to come..

ah gone so, Stax

Well yes…

SIGH! After I published my last post about Shurlan’s ral (a term coined by some members of my family after my grandmothers funeral – they crazy…go figure 😊) I reread it a couple times, looking for errors etc and an overwhelming sense of sadness came over me. I was:
*sad for Shurlan
*sad for J,DeeJay, Dom, Devon
*sad because dr. G was moving back home in 2 days and I’m going to miss him tremendously
*sad because…life…and I have to deal with my wretched disease ALL THE DAMN TIME

it all came crashing down on me all at once. For the first time in a long time, I felt really alone and didn’t want to go thru it all by myself. I called CYute and we made plans to lime. I don’t think he will really understand how much I really appreciated and needed that lime that night.

anyway…so I went home on July 3rd for 10 days. Heading to Trinidad from Atlanta is not the easiest thing to do. There are no direct flights so we have to choose if we want to go thru Texas, New Jersey or Florida. I chose Fort Lauderdale because the airport, cost and schedule were ideal. When I’m travelling with my scooter, I’m on my own – I have no assistance from the wheelchair attendants in any airport. Ramp guys bring the scooter for me when we land and I bounce starter and take off to where I need to go. Landing in Fort Lauderdale on my way back was no different; I got on Bumblebee and started making my way to Customs.

I don’t know if u regular folk ever noticed this but elevators are always in a different spot than escalators that u use and that path is always less travelled. So I was heading to the elevator and bumblebee just stopped. Ah sheeeiiit! My knee usually rests near to the power switch so I hoped that maybe it bounced the switch and turned it off by mistake. I flipped the switch and still…nothing! I flipped it about 4 times to make sure I was seeing correctly and yes, the battery gauge was not moving (the indicator that the scooter is on).the battery was fully charged…that wasn’t the problem (this had happened before but both times I got him going again…after a long time. I didn’t have that time right then). i didn’t know what the hell to do (I haven’t mentioned that I was beat because my flight from Trinidad had been delayed 2 hours). I looked toward the elevator and there was 1 wheelchair attendant there pushing a passenger. Now u hadda understand, these attendants are essentially assigned to passengers who need assistance and remember that’s not me. Shit! Luckily for me, the fella was very helpful and the passenger he was pushing didn’t have a connecting flight and wasn’t in a rush. He left and found a supervisor who’d seen me deplane and who, realising my predicament, brought another chair and told the fella to push us both to baggage claim where he would tell the ramp guys to take the ‘bee. I eh go lie, as frustrated as I was about the situation, I was glad that I was in bumblebee cuz the way he folds up, it was much less hassle to move him around. By this time, I’d missed my flight to Atlanta so I had to call GHK who luckily had nothing going on that night so she could pick me up. I really cannot get into the all the details of everything else that happened in the airport when we got to baggage claim but it included my sitting in a chair (that I can’t work) for what seemed like at least an hour and waiting on the wheelchair fella to square away his original passenger and then come back for me. It was torture…I was frustrated, I was tired, I was hungry, I wanted to get the hell to Atlanta and most scarily, I wasn’t mobile.

finally I got by GHK and more drama. Every time I go by her I use a walker cuz of the layout of the apartment complex and the apartment itself. Well this was not a planned visit, so I had to hold on to both she and Dx to get to the apartment and when inside they decided to put me in a folding chair that they dragged to and fro…sigh; it was a rough night to say the least. My original flight would had had me walking thru my front door about 9 on Saturday night…instead, I walked thru my door at 9:30 Sunday morning. There’s good news…apparently there was a blown fuse in Bumblebee’s guts that has since been replaced so he is as good as new.

All’s well that ends well I suppose. I’ve had nightmares of not having my scooter and the shit actually came true. I can safely say that I don’t ever want to relive that ever again.

hol’ it dong, Stax

Goodbye Shurlan

I said goodbye to meh boy Shurlan yesterday. It still is all surreal to me; I still can’t quite wrap my head around the fact that he’s gone – completely gone. After attending a funeral last year, I made a conscious decision that I don’t want a funeral; it just too somber, too sad, too drawn out and I don’t want that to be everyone’s last memory of me. Well after attending Shurlan’s funeral I realised that they do not have to be sad and somber etc. and if I change my mind about having a funeral, his is what I want mine to be like. Remember that this is only my opinion now and if I sound harsh/heartless I apologise. In the church there were no reminders beyond the obvious (that we knew that we were there for his funeral) that we were there for a funeral. No casket, no pictures of him at the entrance of the church (pictures always get to me), no pictures of him in the program, no eulogy. The priest who officiated knew him personally and so when he gave his sermon he punctuated it with actual stories/jokes etc. The only time we saw a slideshow of pictures of Shurlan was at the very end after the service in a hall next to the church where refreshments were being served…I really appreciated that… it made it a little less sad for me. Everyone was grieving of course because it was a sad occasion but there were no reminders everywhere we looked.

Today is Friday and I had plans of publishing this post this morning because I started it last night, but alas in the middle of typing it I got another call that someone else had died. At this point, i eh go lie I am so very tired of death it’s not funny. J’s mother died last night and he called me and I changed all my plans to ensure that I was available for him and his brothers for however they needed me. They are the little brothers (I’m the eldest…they are all my little brothers…regardless of size lol) that I never had. Steups

after the church service we went to Shurlan’s house. I don’t know how/when the Trini thing of drinks/lime/music/good times after someone’s death started but I’m sure that it is done so that just for those few hours, the family members and those left behind can forget about the sadness and reality of the situation and just have a good time. We were “Jammin Still” as the “happiest people alive” throwing “Splinters” on the bottle and spoon with the iron man…it was a great send off. I eh go lie though, I got the most emotional when the bikers showed up. Shurlan was a member of a motorcycle club and when they all showed up, the music was cut and for 5/10 mins all they did was rev those bike engines…it really was too much to handle for a number of people who were there…just experiencing that brotherhood sigh!….Shurlan meh boy…ride hard, ride fast, ride in heaven where I know u are.

Thank you for indulging me for the past couple posts…I guess we’ll be back to ms next time because, of course, I have some things to talk about.

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