Hulk

this will be a short post.

I’ve talked about Carnival this year and the fact that I didn’t go.  Sigh! Anyhoo, just because I didn’t go and I’m very salty bout it doesn’t mean that I am not totally up to speed on this year’s music. Soca is a happy music; it’s what we jump to when we play mas and is synonymous with having a grand ole time. At times, the lyrics don’t really come into play much except when it’s to instruct us to jump, wave a flag, wine, raise yuh glass…u get the picture.  This year though, there were a number of tunes with messages. Sometimes a song has to grow on me – I listen to a Trini radio station all the time and so the more I hear the tune played, the more I like it.  Well, from the time I heard this one, I loved it and when I realised that it was a song with a message and I actually listened to the lyrics, I loved it even more and I decided that it’s going to be my theme song going forward.

Here are some of the words:

Never let your problems get you down, stay focused and keep yuh ground…what doh kill you should make you stronger so my problems is like steroids…and all now dem still cyah kill me no…so as they box me down so I’s get up, they have to wonder how ah does get up…I just won’t stop…I feel like hulk RAHHHH – RARRRRGGGGHHHH!!!…move any mountain, I trample any building…trample dem, trample dem…step on meh problems…kick out meh problems…trials and testings does come before blessings but we have to be patient yeah!
You see the most high never give us more than we can bear but he give us the strength and the will and the power and the courage to handle our problems thru him so on the count of 4, I want everybody step on their problems. 1-2-3- 4….trample dem..manhandle dem…dismantle dem..kick out dem, kick out yuh problems…so as they sink you under you float, ride out the storm dem just like ah boat, so as they push you down so yuh get up. They have to wonder how u does get up…now everybody shout…I feel like – HULK!”

It can be everybody’s theme song, that’s how we should all deal with our problems.  For me, dealing with everything Multiple Sclerosis throws my way the way I do most times? I feel like – HULK!!!

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