Random Thoughts – Page 10 – Multiple Sclerosis & Me

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!

Introducing Optimus Pride

Soca Scooter is no more.

he had a good 6 year run and at first, he never failed me. Alas, the time eventually came when I couldn’t rely on him any longer. It made no sense that I would be ready to bounce starter and mash gas and………nothing! he just would not move. The vexing thing is that I knew what was wrong but the problem was that I just never knew when it would happen and the time I took him to be repaired, he worked perfectly fine. Now that I’m writing this and think back, the problem started happening a while back but somehow I was always able to get him moving again and never realised that it was actually the start of an issue so I guess it was just the end of the road this time. Anyhoo, I just couldn’t afford to take any more chances and I had to replace him. I’ve talked bout Bumblebee here already. He is my Lamborghini…my weekend ride if u will, and driving up the road in my neighbourhood is just not his scene. I needed another “Corolla” to handle that and all the jammin I put the things thru on a regular basis. Enter…Optimus Pride.

Optimus Pride is like a Soca Scooter2.0 and he’s a chunx bigger. He breaks apart when I have to load him up into a car and he’s low and close to the ground so I won’t feel nervous driving on a slight incline, all the while hoping with everything in me that we won’t tip over. He’s .6mph slower than SS but Bumblebee has gotten me used to the slower speed so no big deal. It’s weird though, the handles and controls are shaped differently and for some reason, there are times (more often than I’m willing to admit) when I press the control at first and we head in the wrong direction. What the?!? Have u not been using a scooter for the past 6 years?!? It really doesn’t seem to make any sense at all, but it is what it is. OP (not to be confused with OB 😉) also has front and back wheel suspension so his ride is nice and smooth.

his name…allyuh know u hadda indulge me.

like Soca Scooter, he’s originally red. Unlike Soca Scooter he came with alternate blue panelling that can be switched out depending on the mood of the user. I was thinking about what to name him and I figured that maybe I could stay with the “Transformers” theme and use both colours. Hmmmm…Optimus. Optimus Prime is red and blue so I can switch out a few of the red panels and use the blue. “Oh self…not a bad idea at all…k, i’ll call him Optimus.” Well the problem with that was that he eh no transformer. when people see Bumblebee in action going from folded to not, he’s a transformer. Optimus doesn’t transform, he breaks down and apart…yes that bothered me (say what u will about me). A friend suggested “Optimus Pride”. Yuh see he’s a Pride scooter…that’s the brand. I thought it was perfect; staying in the “Transformers” theme without actually being a transformer. Quite clever if (by chance) u ask me 🙂

Saturday I was out on Bumblebee and someone said to me, “is that a license plate u have there?” I replied with a “hell yeah!”. I think it was Miami carnival 2013 that I had the idea to create a license plate for Soca Scooter – it was Stax3.25 (my car at the time was Stax3). There was no way that I’d know at that time that five years later, I’d be asking Asal to make Stax5.25 for me.

Optimus Pride – see the blue panel on the front wheel mud guard

Aye allyuh have a great week; I gone so.

My New Challenge

I’ve been M.I.A. forgive me; I had a visitor. Allyuh know how it is, when people come from out of state/out of the country. Was a short trip for Obs so was pace right thru. Things are back to normal now, so back to our regularly scheduled program.

a few weeks ago, I was having a conversation with a coworker and she told me that she really loves rock climbing. Some time during the conversation, my disability came up and she said that the facility to which she and her son go has a “disabilities night” if u will. They shut down the facility to able bodied folk (I think) and the disabled can go climb as much as they want.

a little background for u: Sometime within the last 10 years or so a facility called Stone Summit opened in the area where I lived. Discovering that it was a rock climbing facility, I was intrigued but back then I wasn’t into working out one bit (Steups. Ballys gym got 3 years of membership fees from me and if I went 10 times, I went plenty). Anyhoo, as intrigued as I was about the rock climbing, I did nothing about it. Fast forward to April 2018…

speaking to the chick piqued my interest once again and once she told me about their offer to the disabled, I decided to call Stone Summit (I still live close by). I called and found out that they do not shut down the place for the disabled but there is a group that goes in every Wednesday to climb and that group is specifically “dedicated to providing adaptive adventure opportunities to anyone with a physical disability.” The atlanta chapter offers climbing and cycling. All I had to do was go to their website to find the information I needed. I emailed the contact and discovered that yes every Wednesday from 7-9, for a $10 fee, I ccould go climb. I just had to complete a few forms and give them the details of my disability. Of course, I was concerned about this bothersome left side of my body but the chick to whom I was speaking said that in some situations, they’d have someone climb with me to help.

What the hell did I have to lose? I knew that if I didn’t go, I’d be mad at myself…I went 2 weeks ago. Did I know what to expect? Nope. Was I nervous? Not at all. I’ve discovered that I’ve become quite trusting in these kind of situations. Maybe it’s because I have to be? In certain situations, I need help – I cannot deny that. It’s better to get the help than not and who better to help me than someone who deals with the situation all the time. I got there, introductions were made, I was told how things go and I “gearsed up” – my harness and shoes (there are special rock climbing shoes). Since it was my first time I was given the option of climbing the less intimidating wall – I took it.

So right now I’m using the word “climb” very loosely. They actually put me in a pulley rope system they have designed – remember it’s adaptive climbing. So it was a combination of my physically climbing and their using the pulley to get me up (I cyah lie, it was mostly pulley). I only went that one time cuz remember Obs was here for a short time and we had things going on. I had a blast, I actually went up twice and am looking forward to going again. Going forward, I’d like to start climbing more and using the pulley less (that’s my goal). Additionally, there weren’t enuf volunteers that night for someone to climb with me, so hopefully the next time I go, someone will be there who can “be my left side” so to speak. They can place these limbs or at least help to get them where they need to be. I’m heading there tonight, so stay tuned!

Enjoy…

here i am being carried to the wall. had i walked this, we’d just now be getting there

Ole Talk Thursday

Well…I’m still sane. I know that it’s only been three months but I am okay with no meat on my plate. The other day I told G that I never thought I’d see the day when I’d actually enjoy eating a plate full of raw and/or cooked vegetables and be completely satisfied. I haven’t missed meat, been tempted to eat meat and I haven’t even slipped up and forgot that I gave it up. At least, not with meat…the other day I was eating pizza and it was going down so good and mid chew it occurred to me that “oh shit! I’d given up dairy too.” Oh well, wha yuh go do…well wouldn’t u know that my stomach hurt that entire night. I must say though that eating vegetarian is fine with the exception of “meat substitute” meals. Maybe it’s because I know what I’m missing? I eh care how u slice it or dice it, the “meat substitute” eh cutting it at all and makes absolutely no sense to me. Anyhoo, have I benefitted in any way from this diet change? Haven’t a clue. I really can’t tell physically if anything has improved and I don’t even mean w.r.t. the MS, I’m just talking in general. A doctor once said to me, “you’re really healthy except for this damn disease huh” and it’s true. All my blood work, vitals, cholesterol, whatever else have always been normal. My energy during the day? Normal (for me) how do I sleep at night? Like a baby. So nothing’s changed but I’ll keep doing it. Never know what could happen long term.

Speaking of changes. In December I told you we discovered that my thyroid was affected by the Lemtrada and I now have hypo thyroid disease. The Endochrinologist prescribed a once a day pill and told me to come back in 6 weeks when she would retest. Between then and when I went to see her at the beginning of march, my thyroid was tested twice (as part of my routine monitoring) and those results were out of whack. When she ran the test in March, it came back normal. Yay! I go back to her in April when she’ll test again and then I guess she’ll decide what steps if any to take w.r.t. the medication/dosage. Interesting thing about all of this is that apparently under normal circumstances, if someone is diagnosed with thyroid disease and they are prescribed medication, they have to stay on it for life. With the Lemtrada induced disease, that is not always the case but of course, like everything MS related there is no consistency either. I may be able to come off or not…who knows, time will eventually tell. Story of my life!

Sigh! I’m going to have to give up (and replace) Soca Scooter. I’m out of hibernation now and unfortunately he is not working as he should. I tried to get him repaired but that failed. I can’t be making movements and he stop in the middle of the road with no warning (that actually happened on Saturday in Bumblebee and it is hard to make that look “planned”). If I could, I would get another exactly like him but the company stopped making that model so hopefully the upgraded version can handle everything I throw its way. Thank the Lord that winter is FINALLY on its way out so a gal has things to do and places to go. I plan to make that purchase in the next couple weeks so stay tuned for that.

It occurred to me yesterday that I should call Shepherd Center right about now so that I can be placed on the waiting list to start PT this year. Being placed now should mean that I can start around June or so…exciting times ahead.

Alright, I gone so…allyuh do have a great Easter weekend!

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