Random Thoughts – Page 11 – Multiple Sclerosis & Me

CBD Oil

Cannabis

Disclaimer:I’m no expert and I apologise if my explanation below contains flaws. It’s a basic description in the simplest way I know how.

The cannabis plant produces families of compounds that may fall into one of two categories:

* Tetrahydrocannabinol (THC): the psychoactive component that makes us high.
* Cannabidiol (CBD) – non psychoactive and the component used for medicinal purposes

The CBD is extracted from the plant and used to make CBD Oil which is used for medicinal purposes. CBD Oil may also contain THC but the ratio of THC to CBD is so small that patients experience the healing benefits of the CBD without getting high off the THC. I’m not going to get into the legality debate that is happening all over the US, but it is legal to possess and use CBD Oil in Georgia for a list of diseases, one of which is Multiple Sclerosis. It’s mostly been used to treat the pain associated with MS (in fact, I’ve always heard that smoking weed alleviates pain), but has also found to help with spasticity. Enter Stacey …

My Experience

I’ve been taking a small amount 3 times a day for the past couple months or so. As I mentioned above, it’s most commonly known for alleviating pain but it has also has shown to help with spasticity in MS patients. I was glad to see that because I have no pain (knock on wood), but my left side is spactic – always stiff, difficult to move at times etc., so I was eager to start and to see what my experience would be. I’m currently on a muscle relaxant (baclofen that is mentioned in the video) to help with the spasticity. Years ago, I was actually taking 2 muscle relaxants – if you’ve been reading my blog all along u might recall a pill I referred to as my sleepy pill, well that was one along with the Baclofen. I believe that after my first round of Lemtrada, I stopped taking the sleepy pill because I found the spasticity was less severe. I continued taking Baclofen and still do to this day. At one point in the past I was actually taking it 4 times a day but, also after Lemtrada, I went down to 3. Now remember that everything with this oil is somewhat experimental (for me) so everything’s been trial and error.

Soon after I started ingesting the oil (I put a couple of drops under my tongue), I noticed that my steps seemed more fluid – more natural if u will. I also thought that they appeared stronger. Of course I couldn’t help but think it was all in my head, but J was here in January and he saw it too (the last time he’d seen me was in May). Hmmmmm. A few weeks after, I dropped a dose of the Baclofen so I was just taking one in the morning and one before I went to bed. Okay, that was fine but I knew that the rhell test would be if I could stop either the morning or night time dose. I’ve mentioned here before that when I don’t take my morning dose, I definitely feel the effects of not taking it. My left leg feels like there are 500lb weights attached to it and I just kinda pull it along where I need to go because of how stiff it gets. Similarly, when I don’t take the night dose, my movements are quite “robot like” when I wake up. I was afraid to stop either dose, because moving around how I just described is no fun, but I knew that I had to…and well, I eh go lie I really wanted to, just to see what would happen. 2 Mondays ago, I took the plunge, didn’t take the morning dose and braced myself for what might have come. Well. I haven’t restarted that morning dose and I’m just fine 🙂 No 500lb weights, no unbelievable stiffness and continued fluid movements. I’m really happy about that and I feel confident saying now that “it’s not all in my head”.

I haven’t told Gilbert that I started taking it and decreased my Baclofen doses yet although he knew that I’d been thinking about it. Not sure when my next appointment is but I’ll tell him then. Anyhoo, so time will tell where I go with this long term…we’ll see what happens.

Allyuh! Steups…

I know that sometimes when yuh start reading my posts, u say, “nah. She lying. Stop it Stacey. Stop it.” U think that I’m a lady with a vivid imagination and I make up stories so that u’ll keep coming back. I swear to you right now that I am not and I cannot make this shit up.

I may have mentioned before that Sdee cooks in bulk for me and I freeze the food so I just move what I want to eat from freezer to fridge as I go along. So 2 nights ago, I was standing in front my freezer trying to figure out what I was going to move and when I finally decided, I picked up the ziplock bag, opened the fridge and, of course, as it was going from one to the other it fell out my hand (now I’m talking about a gallon sized ziplock bag full of frozen food here eh). It hit the floor and at first I breathed a sigh of relief cuz if that shit had fall on my foot? Allyuh!!! we’d be having a much different conversation right now. 30 secs later, I was steupsin because it was on the floor so that meant I had to bend down and pick it up.

bending down/over to pick up something from the floor is not my favourite thing to do. My balance at any given time just standing still can be questionable, so add bending over or down to the mix and there is potential for a disastrous ending. Then of course, if I end up all the way down then I have to figure out how to get up, blahblahblah…u know the rest. So, it’s just not my favourite thing to do and actually there are times that things drop and I just cyah bother pick them up so I just leave them where they fall. This was not such a time, so I had to bend over to pick up the bag. The good news was that I was standing in a corner of the kitchen between my cabinets so I knew I’d have stable, unmoving support if I was a little off kilter as I headed down. I bent over, grabbed the bag and started going back up and…nothing. I couldn’t get upright. What the hell? I tried again…still didn’t budge…and then I felt something pulling on my sweater. you believe that because I was so nicely wedged in the corner, that as I bent over, my sweater hooked onto the knob of a drawer and it was completely hooked in with no give whatsoever which was preventing me from standing upright?!?

i figured that maybe if I kept trying to straighten up, it would slide off the knob, but no. The only thing I could do was to go down lower and hope that the sweater would unhook. Then, of course, I had to hope that I wasn’t so low that I wouldn’t be able to get back up. Geezanages I really couldn’t believe it. Luckily that worked and I was able to stand up. Whew! I was up. Any guesses as to where the damn bag of food was by that time? Yup. Right on the floor where it was when I started, so yes I had to bend down/over again to pick it up.

A genius created this the other day…it is the “steups” emoji

That time though, you know that I made sure that I wasn’t as close to the cabinets and/or drawers, so I retrieved it without another incident.

I’ve said it before and I’ll say it again…it eh always easy being me.

Do you remember when…

I saw a picture of myself in Atlanta Carnival some years ago. I was on Soca Scooter but my left hand was in the air, my hand open wide and I got a little nostalgic trying to remember when I was a “regular folk”. Clearly at the time, my hand was not an issue. G and I had this conversation before. We were both trying to remember how I walked, how I moved and I really don’t have any memory of that at all. One thing I do remember is that when I talked on the phone, I used to pace a lot – that certainly doesn’t happen anymore. Anyhoo…a post of some pictures of “down memory lane”.

This is the picture that started my walk down memory lane. My cousin and I were heading to our Atlanta Carnival band. Not sure what year this was but clearly the sun wasn’t as much an issue as it is now because I played mas. My left arm is outstretched and my hand is open and it appears that I’m doing so effortlessly. Neither has looked like that in a picture in a long time – the arm will most probably be bent and the hand curled up.

Years ago (I believe that this was 1998), at the end of the carnival parade in Atlanta. those days are so far behind me because I just cannot be on the road and in the sun for the length of any parade and well, there’ll be no jumping eh. it saddens me, there’s nothing like jumping in a band behind a music truck at carnival time! SIGH!!
the days when I could wine to the ground and back up without a second thought.
…that was then

…this is now

this was 2008; I was playing a game of mini golf. I don’t think I want to take a chance to swing a golf club anymore because I will surely keel over.
this is 2009 in DC and I hadn’t started using a cane yet. Those were the days that whenever we got wherever we were going someone would secure a chair for me so that we had it when I needed it. Unfortunately at this fete, all we could find was a kiddie chair (y was that even around??? Who knows) so I’m sitting on the kiddie chair when this was taken.
This was Miami carnival 2010 and the first time I’d ever partied with my cane. I think I might have felt a little weird at first.

Unlike my initial weirdness of being in a party with my cane, partying/heading out with SS was never an issue and I never tire of/welcome things like this happening 🙂
2017 at home for (the real) Carnival…I’ve “downgraded? graduated?” to a walker and luckily in Trinidad, we can play Monday night mas so I was on my way to meet the band. SS was already in the trunk – playing mas with a walker makes no sense at all. I actually had to party with my walker once – by force. We took the scooter out the trunk and that’s when I realized that I didn’t have the key! what the?!? I felt like a fish out of water. Luckily I had the walker but I’ll be honest, I was self conscious whole night. I feel like a walker has no business in a party…sorry, say what u want about me, but there’s just nothing cool about a walker. I absolutely need it, but not even I can make it hip.

“Today”…

well. I hope that you didn’t mind my short trip down memory lane. Allyuh do have a great weekend.

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.

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.

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.

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