Geezanages!

Pressha!

I have been on a medication for the past 12 years. It’s not an MS specific drug in the sense that it is not one that slows down the progression or anything but it is one of the few drugs on the market that targets a symptom (why can’t I ever spell this word on my first type? EVER!) of the disease. That symptom? walking! Soon after it was approved by the FDA, Gilbert and I talked about it, he wrote me a prescription and the rest is history. It’s a twice daily, extended-release pill so I take 1 at 8am and the other just before I go to bed. Some years ago when I was still on my favourite drug throughout this ordeal, Tysabri, and was still going to the MS Center of Atlanta (MSCA), a nurse practitioner suggested that I go down to once a day to see if I really had to keep taking 2. I did that for about a week, if so long, and that’s when I discovered that not only did the medication help my walking, but it also actually helped with my overall feeling of wellbeing – I went back to 2.

So yes, after a long 11 years or so, my relationship with the MSCA came to an end in 2020. Unbeknownst to me at the time I found them, closed my eyes and chose Gilbert to be my doctor, they had a partnership with another neurological clinic with which he was affiliated – I learned over the years and realized that this was the reason i could only see him on Tuesdays. Anyway, in 2020 I received a notice that the 2 institutions were parting ways and I could either stay with the MSCA or go with Gilbert. I actually decided to break up with both of them to support a black, female doctor whom I’d met at the MSCA and had started her own MS Wellness practice. Oh yes, this was perfect, I can support and get the care I need, even though it was a lil ways away from me. Well. I’m not one to complain but the first time I saw her, I actually told her about my experience with her staff – it was that bad…I won’t bore you with details but understand that I’m back with Gilbert at his other clinic! I have a really hard time dealing with incompetence and bullshit in my old age (except when it comes to my name…I just need to deal with that; nothing is going to change. I was actually referred to as “Stacey-Samuel the other day. LOL, that was a first but I digress)

I’ve often talked about my insurance and my realization that it appears to be quite good based on other stories I’ve heard. I really have no complaints especially after I completely understood the terms, how things work etc. That is until now…sigh! The prescription for that same medication above, has to be renewed annually and so at some point every year after I place a refill order (I have to refill monthly), I get a notice from the pharmacy that “we cannot fill your prescription without prior authorization from your insurance company. We’ve reached out; no action needed on your part” and a few days later, “your prescription is being filled and will be shipped on…”Well last month I got the “we cannot fill” notice…okay, no problem but then on March 10th, I got a notice that my insurance “denied the authorization for your prescription.” Wha?!? Action was now required on my part.

Forgive me if the next few sentences lil hard to follow…Sigh…between then and Friday gone, I’ve spoken to the insurance company reps, who’ve said that the issue has nothing to them – it’s the pharmacy, the pharmacy reps who have said that my request “needs additional review” what review? who can I talk to? no one, “they’ll” only speak to someone from your doctor’s office…I’m the kissmehass patient and they won’t talk to me! (this is my gripe to you, I didn’t actually say that to anyone) I told one man at the insurance company, “there must be someone that I can speak to (proper grammar be damned), u understand that the request was denied by my insurance; Aetna, you all.” He paused for a moment, I stupidly thought that I was making sense and some headway, and then said quite calmly and nonplussed, “I’ll transfer you to Caremark now” (the pharmacy). I hung up. On one of the days, I actually told the medical assistant at my doctor’s office “please don’t get tired of me but…”. She’s the one from whom I got the most information when she told me that they wanted additional doctor’s notes and, of course, she said that they were submitted.

At the point that it became critical, she told me that Gilbert wanted me to go down to 1 pill a day to stretch them out. I started doing that last Tuesday and it really sucks. My days have been going by in waves – I’ve been taking it in the morning so that I’m okay and can function alright during the waking hours but toward the end of the day and by the time I get in bed, I really don’t feel like myself and I just can’t put into words how I feel until maybe an hour after I take the next one in the morning. I’m also lethargic pretty much all day…Thursday, I found myself falling asleep in the middle of the workday at my desk – GASP! and that is completely unheard of. I was never someone who is against taking drugs but this one really seems to make a difference; I don’t think it’s mind over matter. I’m down to 6 tablets. Luckily because of a Facebook group of which I’m a member, I have a plan for if I run out that I’m going to set in motion today, but I don’t know if it will work and I’m not looking forward to running out completely. EVERYFRIGGIN thing is about money. Is Aetna tired of paying for this drug after all these years? I know it eh cheap. Are they thinking that it seems that I’ve been on it for all these years and I’m not walking on my own, so their investment is not paying off?? Is it simply that someone somewhere along the line, has not done their damn job??? steups

Anyway…stay tuned…

Disabled in Trinidad

I’m here, I’m here…I really am!

I went home for carnival this year. Back in 2021, I decided that that there was no way that I was going to miss the first carnival after a 2-year hiatus because of the ‘vid. I’m sure that my friends got tired of hearing me explain that I just knew that Trinidad, the land mass, was going to sink because of how many people were going to be on it and if Trinidad was going down, I had to be there to go down with it! I was there for 2 weeks from the middle of February and oh what a time!

I’ve been going home during all stages of my disability, and I always have to do my due diligence w.r.t. where I can go, what I can comfortably do etc. – I love my country, I love going home but it really is not an ideal place for a handicapped person. I was also home in 2020 for carnival and that schedule of fetes plus J’ouvert worked so I figured that I’d stick with the same this time around too. One of the fetes was going to be a new experience but ‘Jel told me that it was held in the stadium, so I knew that was okay because the stadium is flat. Now, I have to admit that the wheelchair service and accommodations in Piarco, the airport, are second to none in my opinion; at least I’ve never had a bad experience. In fact, when I travel within the states, I’m on my own the entire time (from the time I enter the airport to the time I leave the next airport – don’t get me wrong, it suits me just fine) and I’m never escorted anywhere. In those instances, if I need help, it’s actually easier and makes more sense to ask another passenger than the wheelchair people. In Piarco, I’m put in a wheelchair when I arrive, and they send my scooter to baggage claim so I’m with someone at all times and I eh go lie, it really helps going thru the entire arrival process after flying internationally. It’s a BESS experience. When you leave the Piarco walls, however, all bets are off.

When I was growing up, I took taxis or maxitaxis whenever I needed to use public transportation. Luckily for me these days, there are many other options so most times in recent years, I’ve hired drivers to get where I needed to be. This year, the person was a friend of the family, so he had somewhat of an idea of what he’d have to deal with beforehand (we’d never met but my mother gave him the rundown). I must say though that I’ve never had a bad experience with anyone I’d used prior…I always tell them at the time we discuss where I’m going etc. and everyone has been helpful and cool about having to haul the scooter in and out their cars. I haven’t used the Trini version of Uber yet although apparently, one big difference is that riders do not see the make/model of the car in the app. I believe that after you are paired with a driver, they call to give you that information which means that if I ever use it, I need to be with someone who lives there because I may not recognise the make of the car to make a judgment call about whether the scooter will fit in the trunk. All in all, small ting!

The first few times I went down with my scooter, a lot of people stared at me like I was an extra-terrestrial being. I mean STARE and STARE HARD. I remember one time there were people looking, staring, bending the corner to look and see what I was doing. It never bothered me, I never felt self-conscious, and I certainly never let it stop me from doing what I wanted to; in fact, I remember thinking that it was quite funny. I don’t think that anyone meant any harm; they were just curious and one of the reasons is that seeing a disabled person going about their business and doing their thing is just not something you see happening at home. I certainly don’t have the authority to say that we are second class citizens but maybe we are a forgotten/unthought of bunch? One of my Facebook friends who is in a chair living in Trinidad said that the disabled population just isn’t visible, whether by choice or not. The infrastructure also doesn’t lend itself to be accommodating in a lot of instances. Just before I went down, I saw pics and reels of a new restaurant; the food looked delicious, and I definitely hoped to try it when I landed. Yanz was down there before me and she went to scope it out. Well suffice it to say that I scratched it off my list; it was small, tight (not very Optimus friendly) and included a step up to enter. At one of the parties, there were 2 levels and we decided to party on the bottom level. Luckily I had one of my personal elevators because there was no ramp and we had to go down 4 steps (I have an “elite” subset of friends who religiously pick me up and take me up and down steps if necessary whom I call my personal elevators :-)). I always feel nervous for them even though this is normelnormel if we go somewhere and have to negotiate steps. Well, in this fete, for the first time in however many years, J missed the last step and tripped. I have NO idea how he did that but managed to stay upright and not drop me…but somehow, he did! and the story ends here. I must say that on this trip when I went to the grocery with my mother, not a soul paid me any mind (at least, not that I noticed).

The restrooms at these fetes and on the road is another thing that I always need to think about. At the fetes that I attend, picture 3 or 4 trailers of 4 bathroom stalls each. Once again, I used my personal elevator because there were 4 steps to get to the stalls so the attendant let everybody exit and then he took me up. She then kept that trailer off limits to anyone who wasn’t with me. No complaints there at all. Now using the restroom truck J’ouvert morning is a harrowing experience because well…3 or 4 steps. Now, (for anyone who doesn’t know) J’ouvert is a parade through and on the streets of Port of Spain (the capital) so we were constantly on the move. The band had a music truck, a drinks truck and the toilet truck bringing up the rear – constantly on the move. We had to ask the driver to stop the toilet truck for a moment so that J could take me up the steps. I was so nervous because they were narrow and he had to pick me up like a lil child which is not normal at all! We made it though, and then going back down, he went backwards!!! He is my HERO; I’m still in awe at how he did it.

Happy to report that the entire parade route was a non-issue. Of course, I had to be vigilant especially when we pushed off at 4am. I had to keep my eyes open for ankles (I was in the thick of things, in the middle of the crowd) and potholes in minimum light. There was only one close call with the road and I can’t remember the details so all in all it must not have been that bad. One masquerader asked me to take a picture and she told me that she was really happy to see me in the band. Turns out that she is a Physical Therapist and was just really glad to see me out in the band and having a time in spite of my situation. We had a great time on the road and Optimus was a hit with just about everybody in the band (people I knew and those I didn’t) and he survived even though he had to be thoroughly cleaned after. Carnival 2023 is a wrap!

MARTA Really is Smarter yes

Geez! why haven’t I been using MARTA all along?!? ugh…this is a case of better late than never i suppose. So, I was conditionally approved to use the Marta Mobility service. “Conditionally” means that they approved me to use it only if any of 4 conditions apply at the time that I want to ride. Turns out that because of where my apartment complex is, one of those conditions (there is no sidewalk to use) ALWAYS applies. I always have to scoot on the road when I leave the complex – it’s not a busy road at all and it’s not far to the cross street with a pavement – but the point is, there’s no sidewalk, so technically, I can use the service any time I leave. I’ve been going to Occupational Therapy weekly since December and started using MARTA to go in January. Everything has been so easy, breezy like Sunday Morning, seamless and CHEAP! I don’t have to deal with any attitudes (obvious or perceived). No need to say to anyone (nicely and smiling somewhat while scowling in my head), “it’s okay. If you don’t want to deal with it, I’ll cancel and request someone else” and best of all, my being judgemental and cancelling rides simply because of the gender and race of the driver (young, black women are the worst) is a thing of the past…using the service has been like a breath of fresh air.

One of the last times I used Lyft, I was walking the driver thru removing the seat from the scooter (the very first step of dismantling it). I believe that my 7-year-old niece would have used more effort that the schupidy gyurl was using to lift the seat. Suffice it to say that when she said that she couldn’t stay any longer, I was glad to see her go because she was irritating me to no end, and I was this close to saying something I should not have.

I am also not limited to using it only for doctor’s appointments and the like; I can use it to go anywhere as long as the destination is within half a mile of a regular MARTA stop. Of course, there will be times when I’ll need to use Lyft or Uber but the angst that sometimes came with that will be minimised. I eh go lie tho, I haven’t used either since I was approved and last week, I got an email from Lyft that stated, “hey, where are you? here’s a 10% discount for your next 3 rides.”

Now, each trip costs $4 and when I went to load my card, there was an option for 20 rides for $68 so naturally, I bought that. A number of times, the fare boxes in the buses were out of service but each time, the driver wrote down the card number and we moved on along. On two occasions, the driver told me that there was no money on the card and when I told them that there should be, they wrote down the number and we went on our way. Last week Wednesday, I finally got my online access organised and when I looked, I saw that I haven’t been charged for any of the rides I’ve already taken and there are still 20 rides left on the card. I did the right thing and contacted customer service to report the issue and figure out how to correct and guess what I was told…”hmm…don’t know what’s the deal. don’t worry about it.” I protested a little…feigned concern, so she told me that if I encounter a driver who gives me a hard time, I could (if I want to) go to the MARTA office and tell them that the card doesn’t work so I need a new one. Well hell, she didn’t have to tell me three times; I thanked her and moved on. I’ll continue to tell them that there’s money and I assume that they’ll continue to log my card number and 1 day, maybe when I look, I’ll have 5 rides left. Not much I can do if someone, somewhere appears to not be doing their job.

The one drawback of using the service is that it needs to be scheduled but, in the grand scheme of things, that is smallting and certainly not the end of the world. I will use Lyft/Uber when things come up and those times will not be doctor’s appointments etc. where I HAVE to be somewhere on time, so I won’t let anything stress me out.

I gone so…allyuh hol’ it dong till next time. Stax

I Got Botox

I’ve had crow’s feet for a while. Not sure when they developed (is that the right word?) but they’ve been a presence for some time. I turned that age this year, I continue to deal with my disease and I felt the need to…HAH! I JEST…I can’t even go on. I do have crow’s feet but I actually love them; I feel like they enhance my smile. Anyhoo, the point of this post.

As you know, my left side, the more affected side – both upper and lower extremities get stiff. The medical term for what I deal with is Spasticity. In quite basic terms, Spasticity is an increased rigidity of muscles due to brain or spinal cord injury. It is a condition in which muscles stiffen or tighten, preventing normal fluid movement. The muscles remain contracted and resist being stretched, thus affecting movement, speech and gait. A number of muscles in my left hand, arm and leg are in a state of constant contraction hence the constant curl of the hand, bend in the arm and stiffness in the leg. A number of MS patients are afflicted by Spasticity and (my opinion is) that’s one of the reasons that our movements tend to look the same. Over time, I have observed that our movements are so similar and I’ve actually guessed an MS diagnosis correctly once or twice. Years ago, I was prescribed muscle relaxants to help. I was on one, then two, then one (again) medication with varying dosages. Then I started using CBD oil and I was able to decrease from 20mgs 4X daily to 20mgs daily. That is my current dosage and I guess it works for me, although the muscles are still tight and they continue to contract. If you see any pictures of me, you’ll see that left arm is always bent and the hand looks like I’m ready to coff down somebody. Luckily for me, the spastic limbs are not painful and trust me, that fact is not lost on me, so I don’t have to deal with pain on top of everything else.

As it turns out, Spasticity is also treated with Botox. Botox is used to kill the nerves of the rigid muscles, thus stopping them from being in a state of constant contraction. During one of our sessions last year, my Occupational Therapist brought it up and asked her manager to give her opinion and she thought that I was a good candidate for that treatment. I was officially evaluated for it in August this year. Of course, it wasn’t as simple as “you are good for Botox” and “your appointment is…”. We had to get approval from my insurance company and the wait for an appointment was long. Anyway, I went in for my first round of Botox injections with Gilbert on November 16.

I used to think that insurance was a big rip off, especially when I didn’t understand the ins and outs/terms/how it works etc. Years ago, as a healthy person, I used to get angry when they sent my Explanation of Benefits statements and I saw how much they didn’t pay and how much I had to come out of pocket. Over the years, I’ve come to completely understand the lingo, inner workings and I’ve also come to realise that I’m very lucky because my insurance is quite good – I also “stick with the devil I know” because I’ve been with the same company since my diagnosis and boy am I glad, that as a sick person, I have it! Anyway, so I’ve been approved for one session of Botox every three months for a year. That first session included 15 shots into multiple areas of my arm, ranging from my biceps to muscles just above my wrist on my inner forearm. I was a little nervous/scared; it does involve a needle and I had no idea how it would feel altho I’ve seen videos of people sitting quite still like nothing is happening (side note: people look the same way when they get tattoos and I howled, cussed and squirmed the entire time mine was being drawn). It was fine though, once or twice I felt a slight pinch but nothing to write home about. Good news is that it didn’t affect my ability to do anything by the time I got home and it was a normal day.

The thought process is that those overworked muscles are deadened so the patient can work on strengthening the opposing muscles in order to regain some normalcy. So now back to therapy I go. Gilbert wanted me to wait at least 2 weeks before I started so I had my evaluation appointment last week. As far as the reaction to the Botox itself so far? I wasn’t sure if it were mind over matter, my feeling as if my hand is less tense especially when I’m relaxed and doing nothing these days. It was promising that Chrstine, my OT found that there is less tone in that hand during her evaluation. Same with the arm, it’s easier for me to stretch it out without using the other one to assist or propelling my body forward to compensate for the lack of arm reach. There’s still work to do, they both still curl and bend, but they are certainly not as rigid. We will work on continued strengthening over the next few months. My next Botox session is in February, and at that time, based on my feedback, progress shown etc, Gilbert can choose to alter the amount of Botox or the number of shots. Like everything else with this MS, it’s always a trial-and-error process until we find what works.

There you have it. My Botox story – not for my wrinkles but for my wretched disease!

Stax

P.S. Insurance paid 100% which actually quite surprised me but hey! I’ll take the wins when I can.

MARTA’s Smarta

MARTA is the rail system in Atlanta and “Marta’s smarta” is (or was) a slogan used to encourage ridership. The system is not that extensive, but it does make sense to use it to go games, the airport and some other venues, especially if you can just use the train. Anyway, there is something called MARTA Mobility Services offered to disabled peeps who cannot use the regular MARTA system. If approved, the rider can schedule a pickup to go wherever they need and then you will also get dropped back home. I’ve known about this service for a few years, but I always assumed that I didn’t qualify because, truth be told I CAN use the regular rail system. The other day I decided, “you know what? Let them, the experts make that decision.” I also have a number of therapy sessions coming up (that I’ll tell u about soon) and I will avoid the Lyft/Uber hassles. I applied. The application process involves a section completed by me, a section completed by my doctor (I won’t get into the incompetence I experienced with that) and an in-person interview with MARTA folk. They offer a complementary ride to the interview (nice surprise to me), so I scheduled mine for 2:30 yesterday because, well work, and I always need to be mindful of days off etc and I already had a half day scheduled. My managers are flexible but I never want it to seem like I am taking advantage. The lady told me my pickup time was going to be 1:17 (okay…specific much? lol). I was ready…

I probably could have used the fact that they were late as some kind of premonition for what was to come but I didn’t pay that any mind. It was Atlanta around lunchtime so who knows what kind of traffic was on the road. I had given the scheduler my gate code and building number, as I do everyone who is coming over for the first time so when the gate rang, I went outside expecting to see the MARTA truck but…nothing! I rolled around a little, looking everywhere I could think of but still…no MARTA truck. I decided to stay put because hopefully I would see one at some point, even if it was on its way out (I am close to the exit gate) because the driver couldn’t find me. Just as I was about to make a phone call, I saw it approaching my building. Turns out that the driver didn’t look at the pickup location properly and was waiting somewhere else for me. She pulled up (I thought she was kinda in the road but…), got out and was about to lower the ramp for me to roll on in and we hear “BAM!“. The “funny” thing about this was that I saw the Fedex truck approaching and thought, “hope he can get by”. Don’t you know that saddist hit the MARTA vehicle and just kept on going. UGH!!

So of course, the protocol is that the driver had to call it in and then wait for a supervisor to get there before we could leave. It wasn’t 1:17…by the time she’d gotten to me it was close to 2:00. By the time the supervisor got there and I’d called the office where I was headed for the interview, it was almost 2:45. They told me that I had to reschedule and it was at that point, that I got pissed off especially when I remembered that I really dislike FedEx because in my opinion, it is the absolute WORST delivery service (and that was before the accident). STEUPS!!!

I rescheduled to Friday morning but I still need to reschedule therapy that was supposed to start at that time. This way though, I won’t need to do anything w.r.t. time off at work because I’m already off 4 or 5 half days for therapy. Hopefully Friday’s session can be pushed to the last week of the year when I am actually on vacation – guess I won’t be going anywhere for Christmas. UGH!

The entire situation was annoying, but it was totally out of my control. Wish that I hadn’t taken a couple hours for nothing but wha yuh go do.

hol’ it down, Stax

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