Author: Stax

Meat. Glorious, Delicious Meat

it’s 2018…where does the time go. I swear was just a few years ago that there was all the bacchanal about computers switching from 1999 to 2000. It’s 18 years later and life is moving right along. A lot of people make New Year’s resolutions at the start of a new year. Me? I kinda hold my breath and wonder “what does this disease have in store for me?”  Don’t get me wrong, I know that I can actually have that thought on a daily basis, but instead of dwelling on it daily, I choose to think about it annually. Will I be able to do all the things I did the year before without an issue? New symptoms? Side effects? Ugh! Anyway, it’s a new year so off we go.

I have an adopted aunt who always shares “wellness” videos and other tidbits with me all in the spirit of “what can we do to get rid of this disease”. She shared one around the end of last year and after watching it, I decided to take a plunge. I would have never thought that I would ever hear these words coming from my mouth but “I’ve decided to follow a plant based diet and give up meat”. In fact, it’s meat, dairy and all fish (except tuna for right now…I absolutely love tuna and I’m not ready to take that plunge yet). I haven’t eaten any kinda meat since January 3 and honestly, I don’t miss it or crave it. Of course, it’s only been 3 weeks (I’m re-reading this now and remembered that I’ve done this before – for Lent)…check me in 3 months and I might be a stark, staring mad woman. i tried a diet change a couple years ago but that time I was practically eating vegetables, meats and nuts. I had to give up sugars – ALL sugars, processed and natural. That lasted a few months but I eventually started back eating fruit – I really really craved fruit. I hardly eat any processed foods – in fact, my apartment is not a fun one to be at because the only snacks I have are nuts and fruit.  That’s it.  So processed sugars wasn’t an issue, but natural? that didn’t work.

before you say anything, I know that alcohol is not a natural sugar but we eh having that conversation because alcohol not going anywhere.

The idea behind the diet change is that the disease causing parasites live in our gut and the root of all disease is the state of our gut health. The state of our gut is determined by what we consume and eating a plant based diet is the most natural way to go. Our meats are injected with antibiotics, the animals are stuffed in cages, injected with unnecessary hormones and forced to live in deplorable conditions…but oh a leg of lamb or a sweet curry goat – mmmmhmmmm. I digress! Everything consumed by those animals is then consumed by us and all the extra, unnecessary chemicals and toxins are perfect breeding grounds for the bad parasites living in our bodies that eventually flip our systems on its head and lead to disease.  The doctors (no disrespect to them) prescribe drugs that essentially slap a bandaid on an issue because the drugs may not necessarily “heal” the issue, they mostly just “mask” it while causing a myriad of other things – think about all the drugs we take and all of their side effects. Often times the root cause of whatever issue is not addressed.

every time I look at this picture, I want to reach in, grab a leg and start chomping

I’m willing to try it, I have nothing to lose…actually I might lose some pounds so how is that not a good thing??? no meat, no dairy, no fish.

* will the MS be healed? probably not – maybe I’m embarking on this journey on a negative note already and I should change my attitude
* will my symptoms go away? who knows
* will I notice any improvements? that is yet to be seen

In other news. Why why why did I make the decision not to go home for carnival this year??? sigh…it’s in two weeks and people will start leaving soon . My saltiness has already started but this time I have no one to blame but myself.

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We Talking Side Effects…Again

We sick people can only yearn for the day that a drug manufacturer makes and distributes a drug with good or no side effects.  Before I get into the side effects situation, lemme say that the results of the MRI done in December came back clean. One can reasonably state that Lemtrada is clinically doing what it’s supposed to – slowing the progression of the disease.  I have no additional scarring, no additional lesions on my brain or spine and I haven’t experienced any new symptoms so YEA! I’ll take that and keep it moving.  Leh we talk side effects…

when I first told you about Lemtrada, I mentioned that it could potentially cause my thyroid to overact or underact.  That just seems so stupid to me; just pick one or the other, not both! Overactive thyroid causes (among other things) weight loss and under active causes weight gain.

Disclaimer: please know that I am not making light of either situation. The weight loss/gain and everything else that comes along with each is nothing to joke about.

I just knew with my luck, my thyroid would decide to stop working and I’d gain weight.  I mean can a gal jes lose weight without actually trying??? My thyroid-stimulating hormone (TSH) levels are tested monthly as part of the routine monitoring done by the Lemtrada manufacturer. Everyone knows that a call from ur doctor’s office after a test was performed is not good news, so when my caller ID displayed the MSCA 2 weeks prior to my regular scheduled appointment, I braced myself. I didn’t know what was wrong but something had to be. Turns out that between August and November my TSH level results were erratic at best. Let’s say the normal levels are 1-4, the last test came in at 37.5! I won’t bore u with additional details but suffice it to say that the test had to be redone but the results still came back at 13.8.  High TSH levels indicate what? U guessed it – an underactive thyroid. I am in year 3 of having Lemtrada and apparently it is “normal” for this to occur in year 3. Would have been nice not to be normal but wha yuh go do?

Good news is that this is treatable and, all things considered it is probably the “best” side effect that one can ask to be exposed to. Bad news is that I have to add another pill to my regimen…steups.  More good news too is that I can continue to indulge in my poisons of choice with this new drug – u know I cleared that up right out the gate. It’s a daily pill and it’s already on order and should be on its way to me soon. As with everything I’ve dealt with over the years with this disease, I’m going to have to determine over time what dosage will work for me.  The doctor (I now have an Endocrinologist on my list) said to me “it’s a small dose but if u find that u start feeling anxious, ur heart races, u start sweating a lot or experience rapid weight loss, call me cuz that means it’s too much and I’ll have to adjust the dosage”  Great! More things to look out for over the next few months. One thing that MS has taught me over time is how to “listen” to my body and really be in tune with it, so additional monitoring to be done over the next few months.

Time will really tell how this goes.

An Insecurity

I don’t think I was ever self conscious of having to use any walking aides, at least I don’t remember ever feeling that way. It took me a while to get used to relying on my cane – I remember this story when I handed a guy the cane to hold for me lol -I had to overcome a psychological hurdle to move from cane to walker and using the scooter has always been a breeze. Feeling self conscious or embarrassed about using any of them? Never. Feeling self conscious or embarrassed about having MS? Nope. That is…until now.

i hate public speaking of any kind. I’m not going to tell what I go thru whenever I have to make a presentation at work or make a speech of any kind but preparation involves developing the speech and practising a few times. Interestingly though, at the end, I’m almost always told that I did a great job/get kudos etc. Additionally, I’ve never really liked to hear my voice on a recording or hear myself speak. There have been times when I’d hear a tremor in my voice and my opinion is that it just makes me sound unsure of myself. Anyhoo. So remember I mentioned going to the support group meeting? The group leader told me that she would have guessed that I have MS had we been talking on the phone because of the tremor in my voice and when I think about it now, that’s moment that I started feeling weird/self conscious about having my wretched disease. Since that day, I’m so aware of what I’m saying, how I’m saying it and how I sound – I just can’t help it.

The other day I was talking to Dr. Pallo and frankly, I couldn’t tell u the last time we spoke. I’m not sure about what exactly MS related we were talking and he said,”is that why ur speech sounds so staccato?” Funny thing about his statement was that I was listening to myself during the conversation and I remember thinking “okay…u sound okay” and soon after, here he came with his observation. “Great” I told him what the lady had said and he pointed out that he probably picked up something because we hadn’t spoken in so long.

Between then and now I remembered what happens to me when I get hot. My voice goes down to the volume just above a whisper…no matter what I do, I cannot speak loudly when I get hot. And. It’s. So. Frigging. Annoying!!! I really cannot begin to explain to you how frustrating it is not being able to speak up. I’ve never actually told Gilbert about it (it happens so infrequently that it’s not top of mind when I see him) but I know it’s the MS because once I cool down, everything goes back to normal.  2 days ago I was scrolling thru my Facebook newsfeed and came upon the article below that, once I opened I was so excited to see. The very first line talks about speech difficulties such as loss of volume – it even has a name, Dysphonia. Who knew? Not this chick…it’s so good to see that it wasn’t in my head.

6 Less Common MS Symptoms

Who woulda thought that my speech would make me self conscious and not my various walking aides??? These days whether we just limin or I’m having a phone conversation, I think about how I’m coming across and if the other person is wondering what the hell might be going on with me…I just cyah help it.

Ah gone so…Stax

 

It’s Not Easy Being Me

The Trini way to say this is “it eh easy being me nah” smh…I tell u! Any time I have to stay in a hotel by myself, my biggest concern is “will I be able to climb onto/get off of the bed”. The beds tend to be so frigging high that I may not be able to do so.  Well, I went down to Florida last weekend and my plan was that I’d ask for a cot to be placed in my room cuz surely I’d be able to use the cot if I couldn’t use the bed (I refused to think about whether or not the cot would be too low and still cause problems). So at check-in, I told the fella my concerns and he told me that because I was in a “roll-in room”, the beds were actually not as high as the normal beds (a roll-in room is one with a flat shower that someone in a chair can easily roll in to bathe. I need that because climbing into a tub will not end well for me). He told me to check it out and if I couldn’t get in the bed, he would gladly send a cot up. I got to the room and wouldn’t u know it, I could get in/out easily – no probs…woohoo! Another of my needs (remember I’m high maintenance now), is a stable chair; there’s just no telling what can happen with my using a chair on wheels to do everything I need to do, so why tempt fate? They brought up a chair for me.

I was in a room with 2 beds and I told them to put the chair between the 2 beds…I was set. The second night I was there, it was time to go and sleep and I started climbing into the bed. I guess I misjudged something but the next thing I knew was that I was falling off the bed – I actually remember the night before saying to myself,”oooh Stacey, yuh kinda close to the edge here. Do not fall off this bed.” And so here I was the next night falling off the damn bed. It was fine…I didn’t hit anything or hurt anywhere so was no problem and I landed on my behind. The easiest way for me to get up from the ground is to be on my stomach and push myself up so all I had to do was flip over and restart the process. Well guess what? Allyuh believe that the blasted chair (that I asked them to bring in for me to make my stay easier) made the space between the beds so small that I didn’t have enuf room to easily flip over to get up – damned if u do, damned if u don’t. I couldn’t believe it…steups (of course I had visions of not being able to get up and all sorts of things). I had to do all kinda “manouvre-ings” to get out that space but I did it. It also didn’t take me as long as it could have but geez man is allahdat i hadda go thru?!?

All good things must come to an end so GHK took me to the airport to fly back.  Whenever I fly, I hang my handbag and my carry-on knapsack on the handlebars of my scooter and I hook my luggage on the arm of the scooter and roll it behind me. We pulled up by the curb, I got out and was already sitting on Bumblebee while she got my handbag and knapsack out the car to hang them onto Bumblebee.

Little background here: Soca Scooter’s controls are in front the handlebars (closer to me) so I have gotten in the habit of turning him off whenever we are stopped because it is very easy to hit the controls by mistake and take off unexpectedly (that happens a few times and u learn very quickly to always turn him off). Bumblebee’s controls are behind the handlebars and so his taking off by mistake is less probable so usually, I don’t turn him off (forgive the bad quality of pictures)

Soca Scooter – controls in
Bumblebee – controls out

 

 

 

 

 

 

 

 

…back to Florida.
I guess I was maccoing something because at some point, something triggered somewhere in my brain (actually it might have been GHK’s voice that I swear I was hearing in the distance calling my name) and I realised that I was moving. Waitaminute! What the??? Luckily my reflexes kicked into action (thankfully the MS has left those alone) and I was able to avoid driving off the curb because that’s exactly where I was heading. Thing is, I didn’t understand why the hell I was moving and it actually took me a few more seconds to figure out that maybe I should just turn it off. By the time I’d stopped – luckily minus drama of running over anything or anyone (in the airport on the way down, I’d rolled over a little boy’s foot but he didn’t react so I kept it moving) – I discovered that when she hung the bag over the handlebars, it also went over the controls and, well, Bumblebee was on so off we went! There was a porter standing there watching everything unfold and he must have figured we were crazy because of what happened as well as the fact that of course, after it all ended and everything (and everybody) was okay, we started laughing up a storm.

never a dull moment when I’m involved but then I guess if things ran smoothly, life will be lil boring huh?  Hol’ it dong till next week!

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