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
being “pulleyed in”
starting my climb
almost 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!

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.

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