Multiple Sclerosis & Me

No…no…no

I’m beginning to think that I should stop travelling in in July. Last year I went on vacation and came back to 3 deaths. This year I went home for my 30 year reunion from high school and 4 days after returning, I learnt of the devastating news that a friend was killed in a motorcycle accident that morning. A car turned into his path and he died from his injuries. I’ve since heard that apparently the driver was arrested.

Shurlan was not someone with whom I spoke regularly, but he was one of those people I knew I could reach out to in certain situations and I could trust that he would steer me right. We didn’t see each other often but when we did it was genuine happiness on both sides. We actually grew up a street apart in the same neighbourhood but he was younger than I so I barely remember him from there. Our mothers played hockey together and to me that’s how we knew each other. He moved to Atlanta in the early 2000s (I think) and it was right here that he died. He was a man on his own beat. One of the things I always admired about him was that he always did his own thing and he didn’t seem to give a fcuk what anybody thought about him. He did his thing and marched to his own drum…in the words of another friend “he had a flare about him for the wild side” and another, “all the tings I was too scared or self conscious to do, Shurl do”. Lol that really sums him up nicely. He was a genuine character who told it as he saw it and kept it real and I’ve heard that sentiment iterated by so many people within the last couple days.

its an odd thing for me. As soon as I turned 40, I began thinking about death more than I’d like to admit to the point that I remember having a stern conversation with myself and said, “SELF. U really need to stop with this shit. Next thing u know, u call it on urself! stop it!!”…I don’t do it as much these days but anytime one of my peers/friends/someone close dies, I think about my own mortality and I always think about their last moments…were they in pain? Did they know what was happening? Were they even awake and cognizant at the time? I can’t help it. At risk of sounding very cliched, we really must live like there’s no tomorrow. I think this is worth reposting:

This is my favourite picture of Shurlan that I’ve seen floating around Facebook. Goodbye my friend, u’ll be missed by many. It appears that he was in a motorcycle club and I pulled it down from one of their posts.

Blog Life Cycle

The other day I was thinking about the transformation of this blog and I realised that it has pretty much ridden on the same MS roller coaster that I’ve been riding over the years (not too surprising I suppose by virtue of its name alone).

I didn’t start it until almost 5 years after my diagnosis (2009) so I was sharing everything I’d experienced to that point from memory. Additionally, I was writing every week day; I’m still amazed at that. Maybe I was really making sure that I captured everything before it flew out my brain? Who knows but everyday without fail I published a post. Back then, I was always nervous about my writing and usually felt self concious about sharing (still do sometimes). I’m sure that G got tired of me during that first month or so because I always asked her to read a post before I published it and then the first time I didn’t ask her, I was a bag of nerves. Why? Who the hell knows…go figure. I always worried when I started the day not having anything to talk about, and then somehow I’d think of something and the words would just flow. Even though it was 5 years after my diagnosis, the MS had just started rearing its ugly little head as a somewhat regular fixture in my day to day life and that was something that I had to get used to. It wasn’t until 2007 that I had my most notable exacerbation that lasted 6ish months and since then my physical disability…well u know the story. I had 2 years of blissful ignorance of what was to come.

Prior to that, I don’t think that I was affected much, so I guess you can say that I started the blog at the right time. After I started it, I had a number of medication changes and always had to go thru the process of verification and insurance coverage etc so I shared all of those woes (a saddist who asked me if my name was my real name, a doctor who insisted on marrying me off no matter how many times I corrected him) and dosage issues. Everything was always trial and error and there was a lot going on. Additionally, I had to come to terms with cohabiting with the always-present multiple sclerosis and learn how to share my space with it. It was a constant tug of war with my trying to figure out and understand my new limits and finally facing the reality that life as I knew it was no more; that in itself came with drama and stories galore.

I’m not sure when but at some point, I started giving myself a break because I realised that there was no need to publish daily – that was just extra pressure that I was putting on myself. Then sometime in 2014, I took a turn for the worst (physically).i was still writing but the posts were few and far between and by December of that year, I could no longer write. Even though I hadn’t had an exacerbation per se, my physical disability had worsened and I wasn’t sure just how to handle things. As I suffered, so did the blog because I didn’t publish anything again until June 2016. At the time, I just couldn’t handle writing about being sick anymore and especially about getting worse – putting it in writing just drove the point home that once again, life as I knew it was done and changes needed to be made. Writing around that time didn’t bring me any joy and I just couldn’t do it any longer. Was that a bad or wrong thing? I don’t know but it was what I thought was best at the time. A month or two prior to my starting back in June, I remember that ever so often, I’d think “that’d be a good blog post” and then realise that “oh I’m not writing these days” hmmmm.eventually I really started missing it and I had to start back.

These days, the ms (I don’t always like to give it importance and capitalize; leave me alone, it’s the little things) is stable and quiet-knock on wood-and posting daily is definitely a thing of the past. I don’t like its presence but I’ve learned how to live my life with it’s being around all the damn time and I have little choice but to accept that I have to share my body. I have little drama and there’s just not that much going on (a very good thing if you ask me) for me to talk about hence the reason that I post weekly. There’s no more trial and error with medication; I have the perfect combination of all tablets and CBD oil now (cept for the thyroid tablet cuz my thyroid still eh know what to do with Lemtrada). I know that my pill cocktail is correct – it’s only 2 in the morning and 2 at night – because if I miss either dose, I’m a lil out of sorts (functional but definitely not normal)until I take them. It’s always a relief to be moving around stiffly or out of whack and then discover that I forgot to take pills. I do have to deal with one “symptom” (why can’t I ever spell this word on the first try? ever??????) and I’ll talk about it next time but it is more of an annoyance than anything else.

Anyhoo, FYI…I’m out of here next week Tuesday so I’ll be M.I.A. for a few weeks so allyuh hold it dong till I reach back.

Stax

Catalyst Sports

This is the name of the organisation that is “dedicated to providing adaptive adventure opportunities to anyone with a physical disability“. The Atlanta chapter provides cycling and climbing opportunities and I have been rock climbing with them every Wednesday night. It’s adaptive climbing so they strap me into a pulley system to assist me while I go up the wall and, while a “regular folk” person would normally only need one person to belay (the spotter, if you will, for someone who is climbing), I require 2 – 1 belayer and 1 person working the pulley. Dom has been taking me and he’s observed that they are not working as hard as they did that first day…I’m not convinced. They also have a piece of equipment called the Wellman (system?) that is like a chair (also fitted into a pulley) that someone can sit in and pull themselves up to the top of a wall. The system hangs freely from the top of a wall (it’s not against it) because I suspect that it’s what someone with no or limited lower body strength can use to go up. It doesn’t require actual climbing, u use ur upper body to pull up to “climb” to the top. I’ve used it a couple of times too and I think that I’ll alternate between it and actually climbing the wall weekly. Additionally, one week Huck climbed with me – he was my going to be my “left side” if you will. We got real close real fast…lol. Turned out that he was more than my left side but it worked out very well and we had a great time that night.

you know I have my spiel to explain my issues and I’ve gone consistently enough that the volunteers who are have been there weekly know what I have going on. The first time I used the Wellman, Huck asked me if I wanted to use a strap for my left hand that essentially keeps it in place around the bar that I had to grip to pull myself up (u’d think that because it curls up, it would do so around the bar eh? no that would be too logical…it’ll curl up tight and probably end up on top the bar rendering it just useless). It was very overwhelming for me because I thought, “shit…they have thought of everyfrigginthing!” and I remember blurting out how happy I was that they were in my life…smh. I don’t know who started Catalyst Sports, but boy am I glad they did and I am exteremely grateful for the volunteers who are there every Wednesday night without fail and who are willing to put up with me and my curling left hand, my stubborn left leg and my consistent cussing. My hero days are but a distant memory but when I’m climbing on my own and trying to get the hand or foot to a grip in the wall expletives tend to fly out my mouth. I always have to remind myself that I have limitations and may not be able to do whatever like regular folk, so I need to adjust because generally I don’t remember and that’s when shit starts flying 🙂

anyhoo, enjoy some more pictures…

Grit and determination going up on the Wellman

See the that black thing to the right of my face? that’s the strap around my left hand

Allyuh hold it dong till next time – ah gone so!

Today, we just jibbin…

last week was a blur. I was out of town and the US actually had a holiday so it was a short week. I blinked and it was over.

my elite group of friends has grown by 1 and I have determined that I have a hard head. Geez, I fell Friday before last week and hit my head on a granite countertop. Sometimes when I fall, I hear the landing (I think) and it sounds so horrible that I can’t imagine what someone else hearing it thinks (especially if they’re in another room or something). I was by G2 for the weekend and Char and I were walking along a corridor when I said to her, “want to race?” Of course she couldn’t say no (cuz according to her mother she runs everywhere) so I’m sure she could think of nothing better to do at the time. She said, “READY?!?” I said, “nope” and continued walking. My plan was to walk to the “finish line” (a table), say “ready!”, slap the table and say, “I win.” Well…I got to the table and leaned to my left to slap it and I have NO idea what happened, but the next thing I knew was that I was falling…to the right! Now if someone can explain to me how one leans to the left and then falls to the right, I’d appreciate it; it makes no sense to me. G2 was standing on the other side of the table and she looked up, got confused about was happening and saw me going down in slow motion. She also almost reached out to grab my earring to help me fus she was confused.

Side note: apparently I never alert anyone around me in any way that I’m going down. It’s always a silent, slow motion fall – cuz almost everyone who’s been around me when I fall say the same exact thing.

on my way down, I hit the countertop. I swear that from what I remember hearing I just knew that things might have been bad. Good news-they weren’t. My head hurt, really hurt (only to the touch; not that I had a headache) for a few days especially when I was combing my hair. It’s still slightly tender but all in all, everything is good. I fell once when OB was here in April but I really don’t remember the last time before that. That is a good thing but it would have been nice if right at this moment in time I could say “I don’t remember the last time I fell”…sigh! I blame MS for all falls. Period!

so I’ve shared before that Lemtrada can affect the thyroid and cause hypERthyroidism or hypOthyroidism-seems so silly to me just choose to cause one or the other not both. Anyway, my blood tests from October thru December showed evidence of hypothyroidism so I’ve been on a daily pill to increase the hormone that is produced by the thyroid. Okay, so all along after that the results have been normal. The last time I went to my endocrinologist, she felt good about what she was seeing, so she relaxed her need to see me. Additionally, even though my blood work came back irregular, I actually had no symptoms of hypothyroidism at all, so she felt okay not seeing me as consistently as before. Last month’s test results were positive for it again and so I have to go back to her and she’s going to increase my dosage of the daily pill. Great! Was able to eliminate doses of the muscle relaxant but now I have to increase dosage of this other pill. Anyway while talking to her I learned that (of course) little is known about what exactly Lemtrada does to the thyroid. She shared that she had a few MS patients on Lemtrada and their thyroid results are baffling, confusing, erratic (all those words rolled into one). Additionally, most patients are non symptomatic so there’s really no telling exactly how to interpret the results.

She told me about someone whose result was 200something – the normal range is .45-4.5 and he was walking around normelnormel like nobody’s business. Mine was 12.65 last month so it’s high but again – no symptoms. I’ve gained 1 or 2 pounds but i don’t think it’s fair to blame my thyroid – i should probably blame the beers.

So,I have no symptoms but have to increase the dosage of this pill that luckily doesn’t have major serious side effects. The one “good” thing, at least to me, is that I am consistently hypo and results are not fluctuating all over the place. oh well…wha yuh go do…file this under things over which i have no control.

I gone so. hol’ it down till next time.

Flying High

This post about my losing the ability to dance is old but still valid. I “dance” like only I can in parties and people dance with me and (in the past) Soca Scooter with no problem but I still yearn for the days when I could move freely without a thought. Additionally, ballroom dancing, Indian dance (a style I’d have loved to learn) and everything else is out. I have seen someone ballroom dance in a wheelchair so that is a possibility but I don’t use a chair (honestly I tried to use one on my own in a store once and absolutely failed) and I’m not convinced that ballroom dancing in a scooter is a possibility. As a result, I have to find things that I can do and hopefully discover that I enjoy.

One of the things that I want to do is skydive. Years ago, I had an opportunity to do it and I absolutely refused to pay $200 and sign my life away to jump out a plane that is howmanythousands of miles up in the sky. Maybe it’s because the MS has stripped away some things I want/like to do or maybe these days, my mindset is “life is too damn short and u only have one to live” but now? I want to go skydiving. The problem is that when it’s time to land, the jumper has to tuck their knees to their chest. Allyuh know that right at that moment, I will not be able to bend those legs and put them anywhere so best I don’t go jump out anybody plane. Now admittedly, I haven’t completely explored if there are options out there for the disabled – I exchanged a few emails with one facility and those didn’t really get anywhere – so it’s something that I might get into at some point.

remember I shared that OB was here for a short time in April so I decided to take a couple days off and was thinking about what trouble we could get into and I remembered that there is an indoor flying facility in Atlanta. Essentially, you get the skydiving experience/feeling without actually jumping out of a plane. I called the facility to find out what options I had. In fact, my biggest concern was IF I’d be able to do it and then if I couldn’t fly would I be refunded (cuz it was pricier than I’d expected). I explained my issues as best I could and fella on the phone assured me that I’d be able to fly. Okaaay then, well lehwe go.

the cost includes a crash classroom training session where u watch a short video and learn the different hand signals that may be used by the instructor who stays with u in the wind tunnel and all the gear u need to fly. So you don’t experience the moment that one would actually jump out the plane – the free fall, but you experience the “floating on air” sensation after the parachute is opened. Everything happens in a vertical cylindrical wind tunnel in which air blows from below at 80 mph and faster. I entered the classroom all the while not worried but eager to explain my issues to whomever. I mean, clearly I’m not normal because I was in my scooter but surely they needed to know exactly what we were dealing with right? well, Ryan (the instructor) said very excitedly when he saw me approaching, “are u flying with me today?” I said yes and he said “great!!” but he made no moves to come talk to me. Hmmmmm…We watched the video and he told us where to go to get our suits. At that point, I felt like I had to say something cuz getting in the tunnel and being thrown around did not appeal to me. I went over and started my spiel…”my hand curls up…I can’t stretch out this arm…blahblahblah”. As I spoke Ryan was looking at me as if he was just waiting for me to finish, and then he said, “I’m not worried about you in there. Not at all, u’ll see. trust me, u’ll be just fine.” I mentioned how i tend to put my faith in people in these kind of situations in my rock climbing post, so once again, i “gearsed up”. Allyuh guess what? He was right! He helped me walk up to the tunnel opening and I was on my own after that. Now he stayed in the tunnel with everyone to ensure that we were stabilised cuz we were all first timers but if someone had just walked up and seen me in there, they would have never guessed that I had anything going on. I thought it would be more exhilarating but it was lots of fun nonetheless.

Afterwards I found out that iFLY (the name of the facility) offers an “All Abilities” night monthly. Turns out that one night every month, they offer a half price opportunity for people with all disabilities: “All Abilities Night at iFLY is a unique event that makes the dream of flight a reality for those in the special needs community”. Anyone with any disability who is interested in flying can book time and get to do so without issue. Guess who will be going back to take advantage of that offer? I missed the opportunity in April because I waited too long and the time slots that worked for me were sold out. I’ve been all over the site like white on rice this month so as soon as they announce the date in May, I’ll book my time.

I have a video of my experience but for whatever reason, i can’t get it to play so you just have to use your imagination to see me in that wind tunnel 🙂

Life is too short…live like there’s no tomorrow!

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