Multiple Sclerosis & Me

Method To My Madness

I don’t do anything willynilly (or at least most times I don’t); I prefer to be somewhat prepared – although I know anything can happen at any time. There is always method to my madness. In my last post, I talked about my vacationing, this time it’s about therapy.

as you know I’ve been going to Shepherd for therapy for a number of years. I don’t remember what my process was the first couple years but now I know that I’ll stay on the waiting list for about 2 months before they call me for my first appointment. It’s also no secret that I hibernate during winter cuz I absolutely hate being cold, so why in hell would I coordinate to go therapy anywhere between November and March? So my process is that I call and ask my doctor to write the script and start the ball rolling around the end of February. That would usually put my first appointment in May and I would be wrapped up by July (give or take a month or two)…but of course, that’s MY plan. I believe last year I had to wait bout 4 months to get the call. I actually remember calling shepherd to make sure that Gilbert et al had done as I requested and sent over the order. It was taking so long that I just knew that they forgot me. By the time I was done with therapy, there was almost no time for them to submit insurance claims. Insurance – that’s the other reason that I do what I do (as far as timing); I like to make sure that they have time within the same year to submit claims to the insurance company. As you can probably guess, the shit eh cheap and so every year, I max out my contribution to my Flexible Spending Account (FSA) so that I can pay for therapy without touching the money in my checking account.

let me explain. Every year in October, I can allocate up to 2600 of my paycheck to go into an FSA account that can only be used to pay for specific medical expenses as defined by Uncle Sam during the following year. Unfortunately one has to estimate the expenses for the upcoming calendar year to determine how much to put in. I love having it cuz I don’t have to use “my money” to pay for doctor visits, pills and other stuff but it kinda sucks because even though it’s my own money put into the account, if I don’t use it up, I lose it although it changed a few years ago and now I can actually roll over up to $500.

back to my method…if therapy is wrapped up by July/August, I should be receiving bills in the August/September timeframe right? At the very least by November, I should have paid Shepherd all their money and I’ll know how much is left in my FSA account and how to organise – I get new glasses and prescription shades every year to get that money down as necessary. Back to last year…everything took so long that I ended up making a balloon payment on December 30th (without actually receiving a bill) cuz I wasn’t trying to lose any of my hard earned money – remember they only allow u to roll over $500.

this year, I knew I was golden. Therapy wrapped up in august;I knew I’d get my bills and they’d be paid; I wouldn’t have the angst from last year. Wouldn’t you know it, I’ve only gotten one bill for a little over 200 thus far. Steups. I’ve called to find out what the problem is and each time I was told that “they have a new system and things changed so everything’s taking a little longer” and “no ma’am, u don’t have a balance.” Double steups. Whattheheck. I can’t believe that I’ve been hounding an institution to friggin pay them! The one saving grace that I have this year is that I now know that I have till March 31st of next year to use the money but I would rest easier if I could just pay them and be done. Sigh…at last check i still have a little over $1400 in my account.

Hol’ it down – I gone so..

Whew!

I’ve been missing…for good(ish) reason. The past month has been quite hectic. I had to move, was working on a big project at work and then right after all that wrapped up, had to organise, amidst all the chaos and move clutter, to go on vacation. Everything culminated all at the same time essentially and I really had no room for error and had to focus to get things done correctly. Imagine I actually said “if I had my way, I wouldn’t go on this cruise right now…I just need a 3 months to organise myself”. I pulled off everything without a hitch but my writing suffered and it had to take a back seat for the hour.

I’m going to ease back in and just talk a lil bit bout vacationing – no details or stories just yet. I wish I can go on vacation willynilly (and maybe I can but I’m not that brave). I always think about so many things, namely:
*who, if anyone, am I going with (as independent as I can be, I am always mindful of everyone else around me – I don’t want to cramp their style)
*is the terrain scooter friendly and will I be able to move around?
*what about where I’m staying, will I be able to get in and out of the bed?
*Does the place have rooms with roll in showers? the list goes on.
The struggle is real and sometimes it’s just easier to go home (where I know I’ll be good) or not go to new places -just depends.

so for the past few years ASal has been talking about going on the Ubersoca Cruise and as much as it sounded like it would be fun, I was sceptical. You see, I’d never been on a cruise before and yes, I hear that they cater to the handicapped etc, I just didn’t know for sure. Depending on the situation too, I prefer to be told “yes it’s Stacey friendly” from someone who knows specifically what I’m dealing with and whom I can trust…that’s probably very limiting but it is what it is – maybe one day I’ll let that go, but it eh today. Well she got the opportunity to go last year and when she came back she said “easy peasy for u…won’t be a problem at all!” I signed up for 2019 without hesitation.

I am so very happy that I went; what a time we had! Of course two days before we left, I started worrying about whether we’d specifically asked for a roll in room – did we even need to on a ship? I couldn’t remember…cuz we talked to the organisers in march or something so and here we are in November. Was I making a mistake? Shit…nothing I could do about it at that late stage, just have to go and deal with whatever the universe had in store for me. Well the universe had a bess time lined up and it was a great 5 days. Will I cruise again? Yes without a doubt although after the USC2019, all other cruises may pale in comparison and I may find them quite boring LOL! like i said, no stories just yet but know that they are coming.

will I ever throw caution to the wind and just go? Doubtful. I like to know what situation I’m going into and need to have some understanding that maybe I’ll be able to handle whatever is thrown my way while keeping in mind that with my wretched disease, anything can happen at anytime. Anyhoo, ah gone so till next week…allyuh hold it dong.

CATALYST SPORTS ROCKS!!!

Catalyst Sports

Last week Saturday I had the opportunity to go on my first outdoor climb and I can safely say that it was the best Saturday in a long time. It required waking up at the crack of dawn on a Saturday for me and SD who took me to the meeting site, but small ting. the bus was packed and Huck took off…he drove us the 2 hours to Sand Rock, AL. I think it’s safe to say that everyone who was there had a great time – volunteers and climbers alike.

Kudos to the climbers – Lina, Kim, Cecil, Ashwin, Marjorie, Mike…we need to be extremely proud of everything we accomplished that day
HUGE SHOUTOUT to: Eric, Gillian, Huck, Ira, Megan, Lynette, Mike, Michael B (who pulled double duty), Kristen, Mimi, whomever else I haven’t mentioned by name and all the Wednesday regulars who weren’t there. The things you do and make possible for us is nothing short of amazing. THANK YOU!!!

Enjoy some pictures…

that’s me on the right with Huck, my sideclimber AKA my date

Lina, my hero…i was jealous…i wished i could have climbed this

it’s always me when u see legs kicking out like that…sigh

doh ask where I was…steups…so i missed this

they were nice enuf to let me have my own

…waiting patiently for the next one!

A Lil Trini Speak

Moving from Trinidad to USA was no easy task for me. I remember crying almost everyday during my first year. I knew 1 or 2 people, the place was huge, McDonald’s food was shit (what the hell was all the hype about), money was all the same colour, Spelman girls were too loud and good Lord, are these people even speaking English (I hate the southern accent)? …and it hadn’t even gotten cold yet cuz I came in August. There was a lot of adjusting to do…and then of course, I’m sure that all of us at some point had to deal with the “do you swing from trees” or something along those lines questions. All of that coupled with the fact that the only experience I’d ever had with America was Disney at a young age didn’t make things easy. I’ve been here 28 years now and after all this time, all the ups and downs, adjusting to the American culture, Trinidad is still my home. I never refer to Atlanta as “home”; I’m a Trini girl thru and thru.

In my opinion, one of the biggest adjustments we have to make is the way we speak and I’m not talking specifically about our accent; it’s the terms we use (hell, u see I’ve had to create a Trini dictionary on this blog cuz so many of the terms we use make sense only to us). Some of us come here and turn into what we refer to as a “fresh water yankee”… in other words they come here and develop a thicker, stronger American accent than people born and bred here. Some just develop a slight twang of sorts, some just conform and start using American terms or pronouncing words how they do and i would say that it’s, for the most part, all in an effort to make life easier for us. At some point, u get tired of not being understood and having to constantly repeat urself (to this day every time I say “the first” of the month, people think I’m saying the fifth). I speak much more slowly than I used to and I pride myself in still having my accent although maybe it’s not as strong as it used to be? I remember one time being so insulted when a cousin’s spouse told me that they didn’t think I was from Trinidad -coulda bitch slap that person right there and then. I always give one of my good friends a hard time when we go out and he asks for “war-derrr” instead of “war-tuh”. One time daddy went to a store to buy AA Duracells and he eventually got tired of not being understood as he was saying “bat-trees” so he asked for a “badder-ree” and he was pointed in the right direction.

I never really appreciated the things we say and how we speak until I left because up till then, everything was just normal. It wasn’t till I left that i realised that the things we say/words and phrases we use are foreign to other people especially here in the US. These days I can honestly say that I LOVE how we speak and all the various terms and expressions we use. Moving around in our daily lives, as we do whatever we do, it’s not easy to spot another Trini but from the time they open their mouth to say something? we know – and it could be the accent or simply something the person says. So one day I went into Shepherd for my therapy and there was a lady sitting there waiting too. She was on the phone, I heard her talking but i paid her no mind…I eh go lie, sometimes I get curious of people’s stories…did they have MS? How long? What was their progression? especially depending on the state of their disability…but that day, I was in my own world. Then I got a call, had my conversation and hung up…And then I heard, “so which part yuh from and how long u dealing with this schuhpid disease?” Wha? You see, “which part” and that pronunciation of the word “stupid” is all us. Where did this person come from? It was the same lady (she’d been behind me the whole time)…hearing her on the phone before, I would have never pegged her as Trinidadian. I smiled…u see it’s always good to discover a “kindred spirit” ..and we exchanged a lil small talk about being diagnosed, not being at home and dealing with our mutual schuhpid disease before Rebecca came to get me.

that’s it today…nothing really ms related. Allyuh have a great week, ah gone so!

Adaptive Sports

As u know, I’ve been rock climbing since last April. I’ve missed a few weeks recently because of work, because of life and well because at the end of the day, it is a workout and every now again, I just don’t feel like going – it is what it is. As hard as it is, I really thoroughly enjoy it although sometimes I can’t help but feel badly for the person who is side climbing with me at the time. Those volunteers deserve awards because dealing with my left hand and arm and, every now and then my left leg, is a mini workout itself. Side note:when Rebecca evaluates and measures my left hand grip, the scale barely gets a reading, but i’ll bet that if she were to measure when one of Catalyst volunteers is trying to pry it open to grab a hold on the wall, the reading will qualify me for American Ninja Warrior…but as usual, I digress. I’ve come to realise that I’m glad that I never started rock climbing before. Hear me out…

Years ago, G and i started yoga. She absolutely hated it and I absolutely loved it. Thinking back, one of the reasons that I loved and looked forward to the class was that it wasn’t ur typical workout with machines and reps and weights and blah blah blah. It was (for me) in the same category as dancing because I was getting exercise in without its feeling like a workout. Attending yoga class was the one thing I did religiously…until I didn’t. lol. Anyhoo, as ms invaded my body and things started changing and I realised that there were things that i just couldn’t do any longer, i discovered adaptive yoga. I contacted the lady who taught it and she came to the house once (can’t remember y it was just the one time but it might have simply been a scheduling thing cuz she came during a workday). We kept in touch and at some point, she told me that she was going to start a class after hours, was I interested? Hell yeah! Sign me up…

If I’m remembering correctly (which is debatable), I think I went to 3 classes. I re-read this post and clearly I wrote it after the first class because eventually, I really, really disliked it – it was actually depressing. I couldn’t do the simplest things and on top of that, even though there were other people in the class, I felt like I was the worst and struggling with everybloodything the most. It was a constant reminder of things that I could no longer do – I was completely disinterested.

Admittedly, now that time has passed and we have (kinda) learned to live together comfortably, no not comfortably…without as much conflict, maybe I will revisit? No promises although I told Taylor that I’ll incorporate her Pilates classes at Shepherd next year (even got Dr. Gilbert to write a prescription for it so that I can pay with my FSA card).

I really believe that had I started rock climbing as an able bodied, normal person, I would have felt the same way about it. Sometimes I look at other climbers and I wish I could scale up the wall like Spidey too but I am not discouraged by it and it certainly does not depress me, the left arm/hand annoy me when they don’t corporate and I cuss a lot (and apologise for it) but I’m not discouraged. Luckily I have no reference point and have no idea what that’s like. So I keep going at my speed doing as much as I can all the while willing that hand and arm to stop acting the fool and just relax a little and open up for us so I can grab the blasted hold.

Allyuh hol’ it dong…till next week!

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