Stax – Page 17 – Multiple Sclerosis & Me

Lemtrada Progress

I tend to feel badly/kinda dislike (dislike is harsh wording) when I’m asked how the “new” medication is working. The reason is that I really don’t know exactly how to answer that question and I really do feel badly fumbling thru whatever answer I give. MS medication is not like ur typical Tylenol Cold, Aleve or any other OTC medication you buy – u buy them and within a couple hours, your pain/sneezes/coughs etc (should) go away. All the MS medications promise to slow down the progression of the disease and then there are one or two that claim that some disability may be reversed. So is it working? I don’t really know…I definitely hope so…I certainly can make an assumption that it is and I go with that. One thing that I can say with certainty is that I have no additional MS symptoms and no new worries…I still only have walking issues, weakness on the left side of my body and my left hand closes up. If that is a measure of whether or not it’s working then “yup! It sure is working”. I don’t think that that is a stretch, so I usually go with that.

its weird. I’m “with myself” and see myself everyday – indulge me. Most times, I think that my disability is slowly but surely getting worse. I have good days and not so good ones – funny, the good are almost always on a weekend. On those not so good days, my movements seem much more laborious and in my mind, I move a lil slower. Well, within the past month or so, I’ve seen a number of people who are not in contact with me all that often and quite a few have remarked that “u moving very good” or “u walking better than when I last saw u” or “u moving rhell fast” and “u appear stronger than last time”. At first, I was a lil sceptical (wondering if that person really knew what they were talking about), but the more people who say it, the more I’ve started thinking that maybe I’m the crazy one. Don’t get me wrong, I still have some “not so good” days, but maybe overall I am looking better and so is the medication working? Maybe it is.

Lemtrada has a laundry list of side effects(of course) and I am constantly being monitored so that at the first detection of any of them, steps will be taken to combat (I finally finished the dose of antiviral drugs I was prescribed after the 2nd dose so I think it’s safe to assume that my immune system has completely regenerated). I do a skin check regularly so that I can report any abnormalities as soon as I notice anything. Every month, a chick comes to collect a urine sample and 4/5 vials of blood that are tested to make sure there are no changes with either. Every 3 months, she takes an extra vial so that my thyroid functions can be tested because it can cause overactive or underactive thyroid (this is just so comical to me because it just seems counterintuitive – I feel like if it must cause thyroid problems, it should jes choose one and run with it).

I will be remiss, if I don’t mention here that my veins always cooperate with her…they muhbe get tired of playing hide and seek all the damn time – no need for celebration every time she comes over and she’s usually done in a few minutes or so.

I have no more doses to take – there are only 2, so at this point, it’s just to wait and see what happens. The last time I went to the MSCA, my doctor talked about sending me for an MRI in a few months, so at that point I guess I’ll have a clinical answer to “are the meds working?” If I have no new lesions on the brain or spine, then I’ll definitely be able to say, “yes, it is!”…I think 🙂

Things I Learned as I Rolled

Last week was a weird one, hence my posting off schedule. Also, WordPress formatting automatically increases font size of bulleted items so don’t hold that (below) against me.

My dislike for bathroom mats is real! Huh? Yes it’s true. This is what happens:

I walk in to use the goddess and my foot, 9X out of 10, will get tied up in whatever mat is there. I remember one time going in and there were 2 (double ugh! what the hell is the point of 2?!?) thick ones so my sneakers just kinda sank into them and once that happens, the feet eh going anywhere easily. Remember that my left leg/foot is weak, and once the foot gets stuck, I’ll be going nowhere fast. 2 Saturdays ago, I kinda lost my balance lil bit and I was standing on a bathroom mat. It wasn’t plush but the bottom surface was slippery so I started sliding. Had I been by myself, I would have hit the ground. I have NO use for them and I wish that I didn’t have to deal with them ever.

Handicapped vs disabled

Apparently it’s not a nice thing to describe somebody as handicapped in this country – they say that it’s offensive. Quite frankly I doh see the big deal. Handicapped is not being able to use part of your body or your mind because it has been damaged or does not work normally. Disabled is impaired or limited by a physical, mental, cognitive, or developmental condition. Hell. I know that I have problems walking around and need walking aides, cyah play mas or buss a good wine when I ready – I have limitations and my body doesn’t always work normally. I definitely prefer:

To be spoken “to” vs. spoken “about” as in Person A talking to someone I’m with, “can she walk?” hello! I’m right here…u can ask me
If someone asks “how” they can help or “if” I need help rather than just doing what they assume will help
When people actually listen and follow my instructions when I explain what will actually help

Being referred to as handicapped vs. disabled? cyah bother get my panties in a bunch over that

Sometimes figuring out how to get up is actually worse than falling

A fall is never a nice thing but I’ve discovered that sometimes (I guess if it’s a “good” fall) it’s more traumatizing to figure out how to get up than the fall itself (especially if I’m alone). Sometimes, it’ll even take multiple tries before I get it right. one time, I was alone and I had just unlocked my door and buzzed a couple into my building. I fell in the kitchen exactly where they would be entering…I didn’t even try getting up; I just stayed there cuz I figured I’d just use the help to get up. Of course, as soon as they poked their heads in, I assured them that I was okay because I knew it would have been alarming to push the door and see me on the floor.

Not all “accessible” hotel rooms are created equally

I learned that the hard way. I cannot climb into a tub so I need a shower stall (luckily some hotels actually have showers) or what they refer to as a “roll in” room. Essentially, I need a room that someone in a chair needs so that I can just shuffle into the shower. The first time I booked an accessible room, it had bars all over so I could hold on and stabalise if needed but there was a tub and that was of no use to me (the last time I tried to climb into a tub, I’d thought, “hmmm…I can do that – looks doable” – it wasn’t! It didn’t end very well and G2 had to buy a new shower curtain rod). Luckily, the hotel had a roll in room that I was transferred to so the weekend wasn’t shot to hell.

Pushing a door is better than pulling

This one is probably obvious but if a door has to be pushed to open, I can use Bumblebee to do the work – no probs. If the door is to be pulled open, I could find myself in a pickle…unless the handle is on the left side. Did it ever occur to me what side a door handle was on before? Hell no! Now it sucks when the handle is on the right because of the angle at which the door opens and the position of Bumblebee. Writing this, I realise it’s hard to explain but trust me…it’s not an easy feat (nor do I look nice and/or graceful) getting thru a “door to pull” when the handle is on the right.

i’m sure there are some more things but I can’t think of any right now; maybe this post will have a part 2. Anyhoo, I hope allyuh have a good week until we meet again.

Carnival Chronicles III – The Final Chapter

My flight back to the US was at noon on Carnival Tuesday. I woke up and was moving slowly – I had reached home only a few hours before so I wasn’t ready to wake up but “all good things must come to an end” so I got ready. By the time it was time to leave for the airport I was fine. Boarded my flight without incident and headed back to reality. I remember feeling a little out of sorts but chalked it up to being tired and I think I slept most of the 3.5 hours. About 45 mins before it was time to land, I pulled out my immigration form to complete it. uhm…uh oh! I was having an extremely hard time holding the pen and writing. What the?!? The more I “wrote”, the worse my handwriting got. Eventually I gave up because had I continued the immigration people woulda told me, “eh eh…you go right back where u came from!” I took a deep breath and asked the chick next to me to complete it for me. She was happy to oblige but all the while, I kept apologising because I really felt bad and couldn’t believe it had come to that.

I’m usually the first to board a plane and last to leave. Now because I ask for an aisle chair, they would normally bring it for both the departure and arrival airports but as I mentioned in my last post, I usually tell them not to bother when I land. Also, most times I don’t ask to be transferred to and from my window seat, I’ll just shuffle the 2,3 steps across the other seats to the aisle. That day when we landed, at first, I could not move (literally). I couldn’t do shit…could barely unbuckle my seatbelt. That’s when I realised that I wasn’t feeling well and appeared to be getting sick. The fellas arrived with the chair and I still hadn’t moved – except to finally unbuckle the belt. They had to transfer me from my seat over to the aisle chair. I just couldn’t get up to walk over. I went as far as to ask the guys to transfer me to SS – I just didn’t trust that I could get on. Shit!!! What fresh hell was this? I was in Fort Lauderdale…I still had another flight to catch 3 hrs later to get back to Atlanta…uh oh. I had to go thru immigration, get my luggage, drive to a completely different terminal, check in, go thru security, get to my gate AND wait three whole hours…the way I was feeling, I knew I wasn’t going to make it on my own.

i asked one of the guys if he would please go with me all the way to my gate cuz I wasn’t feeling well (see, they automatically help if u’re in one of their chairs but because I use my scooter, my ass is grass – LOL – what I mean is that I’m independent so the assumption is that I don’t need help). Well I certainly did that day. I’ve learned that people are generally nice…I’ve never asked for help and received a “no” for an answer…guy helped me with my luggage and walked with me all the way to my next gate. I cannot begin to explain how grateful I was. If only I could have curled up and slept while he waited for boarding time. Finally, after what felt like days, I was back in ATL. Atlanta airport is 5000x busier than Fort Lauderdale so in that airport, I was actually rolling with someone who was pushing a passenger in a chair. By then, I could barely lift my left arm (my problem side) to work the controls of SS – I actually had to use the right to stretch the left to reach the handle. And steering? Especially around corners? It was embarrassing!!! I kept running into doors and all kinda things cuz I just didn’t have the strength. At one point, I actually said to them, “listen. I drive this like a pro normally but I’m not well right now so please bear with me.” It was one of the few times that I actually asked G to come inside the airport to meet me.

Turns out that I’d come down with the cold – just the common cold but here’s the thing about my contracting the common cold (with my already compromised immune system) – my body has to fight (however many more times) harder than a well person and all my “MS Issues” kick into overdrive, so essentially…it COMPLETELY KNOCKS ME DOWN!!! I couldn’t do anything for myself. I actually had to have someone with me 24/7 for the following week and a half. I was supposed to go to work the Thursday and Friday after I came back. I didn’t…not until Monday, and even then I wasn’t completely healed. It was horrible; I wouldn’t wish my experience on my worst enemy.

Was going home for Carnival worth it? Hell yeah!
What did the whole experience teach me? Next time, I will stay home for at least a week after. I not rushing rush back…If i’m to get sick, let it be at home!

Allyuh have a great weekend. I have to go say goodbye to a friend who died last week Friday. I loved him…even though he used to call me Bert (LOL – I had a uni-brow in those days). Life is unpredictable and tomorrow is never promised. Live each day like it’s ur last.

Stax

P.S. I’m completely healed and back to my normal self with no lingering effects

Travelling

I’ve been struggling with this post for a while.

Travelling (at times) has changed for me.

I’ve talked about my diminished ability to hold my pee and my visiting the porcelain goddess just because there’s one that I don’t mind using, not necessarily because I have to go.

These days when I’m heading somewhere on a plane, I ask for an aisle chair (the chair they use to roll u thru the plane aisle to take u directly to your row). Usually by the time I get ready at home, get to the airport, go thru security, pee (I always go before boarding a flight) and wait by the gate, I won’t trust myself to walk to my seat, so to avoid any drama, I request the chair. Most times when I reach where I going, I’m relaxed (and want to stretch) so I’ll walk off (also depends on which row I’m in). The other thing I must do is sit in a window seat. This is what will happen if I don’t. Someone in my row will need to pee and ask me to pass. I’ll say sure and makes moves to get up for them to pass. It will not happen the first time I try (just cuz that’s how things happen with me) and then the more I try, the less movement will actually occur until I’ll be so embarrassed because eventually said person will need to climb over me to get by (u see, the more anxious I get, the more my body works against me). That said, I sit in a window seat so I am never in anyone’s way and the only conversation I may have to have is to ask someone to pass my bag from the overhead bin when it’s time to leave.

Additionally, now that I use a walker, I don’t travel with any walking aides except the scooter – it’s less hassle to rent a walker (yes, that’s a possibility) when I reach where I going or I actually have a walker in some places I go regularly enuf. Then, what’s the one thing u always have to be prepared for on a plane? Turbulence – it’s a given for most plane rides right? so…

here we have Stacey’s Recipe for Disaster/Embarrassment:
1 need to pee
1 absence of a walking aide
1 wave of turbulence
Reminders: I will have no cane/walker and I will be sitting in a window seat (which means 2 people will have to move to let me out and walking thru a plane row is not an easy task for me)

…I had to make a tough decision. I had to figure out how to avoid that recipe at all costs. the only thing that came to mind was adult pampers. I’ve talked about MS’s ability to strip away one’s dignity before…I guess this is one way to avoid that.

what is the alternative? not wear them and fall down in the aisles/go on myself and/or the plane seat (I shudder to think).
what’s more embarrassing? wearing Depends or having to tell an air hostess that I had an accident in my seat?

I bit the bullet. Nowadays if a trip is going to last more than 2 hours, I wear Depends. Getting up and walking to the plane lavatory is out and eh no way in hell that I’ll be holding anything for 2+ hours.

It sucks and I don’t like it but it’s one of those necessary evils that I must contend with. I don’t completely trust the things so I actually only drink bare minimum from about 3 days before I have to travel – that way I don’t even need to use them.

anyhoo, it is what it is I guess…just one more way of making adjustments to deal with my wretched disease and not allowing it to get the better of me because then I’ll go nowhere!

Carnival Chronicles II

remember, this was my schedule:

Friday (from bout 4 pm) – PHUKET…it’s Carnival Friday
Friday (whenever after PHUKET) – house lime
Saturday (7pm”ish”) -house lime
Sunday (4am) – Vale breakfast fete
Monday (7pm) – Monday Nite Jammerz night mas
Tuesday (12:30pm) – fly back to the US

I’ve never been embarrassed or self conscious about my walking aides -well maybe that isn’t exactly true, the first few times I had to use my cane it felt weird- but sometimes, especially when I go somewhere for the first time, I feel anxious cuz I never know what I’ll encounter. I was a lil anxious going into Phuket. It was my first time in a Trini Carnival fete – that’s quite different from a party in Atlanta. Anxiety aside, I was with J so I knew that whatever we encountered, it would be alright. We got inside (no line) and everything was a breeze. Not one issue and the venue was flat concrete…perfect!!

We started limin outside but sun was on its way down and the temperature was comfortable. Eventually we moved to the covered area where the party was happening and I was able to manoeuvre the crowd and get to the sidelines without issue. Looking back now, Phuket definitely was my best experience. House lime was no problem…I actually used my walker there so nobody had to deal with hauling the scooter in and out the car. Saturday morning – no recovery needed. 2 down, 3 more to go…

Next stop house lime Saturday. well, I decided to sit that one out because I wanted no problems Sunday morning (next time, don’t think I’ll skip it). J & S picked me up about 4:30am and we were off. Being disabled has its perks. As we rolled up to go in (line long like hell), I was approached by someone who said, “come with me” and we rolled right to the top of the line and into the party. Now this place was some kind of field -all grass and no shelter/covered area. Luckily the grass wasn’t long enuf for SS to get stuck (rolling in grass always makes me nervous) so it was good and we ended up limin on the sidelines on a concrete strip so no issues. Party nice. I saw a lot of people I hadn’t seen in years, drinks was flowing, I ate what I wanted to eat, music and vibes cyah done but, of course, what had to eventually rear its pretty little head? the sun!!! (reminder: MS +heat or sun=disastrous results). well I was good until bout 11/11:30am when I started to feel the energy slowly draining from me and eventually, I could do nothing but sit. I’ve talked about how stubborn I am when it comes to the sun but this time, in my defence, I had nowhere to go. there was no shade anywhere. Besides which, crowd was massive; I really didn’t want to navigate it. I was in rough shape. I cannot really begin to explain just how mash up I was.

What u cyah tell from this picture is that that position I’m in was the only position I had strength to be in. I could barely hold up my head up properly on the way out and as I saw the photographer, I tried to wave but – nothing. u’re also not seeing that J is actually controlling SS (we were driving out at this time). I couldn’t lift my arms to press the controls so he’s walking beside me driving and steering. S actually had to lift me into the car and out when we got home. By that time, I’d cooled down considerably but I was still very weak. it was 3:00pm (Sunday) then…I slept till 6am Monday morning.

I woke up fresh as a daisy Monday and was ready to go on the road for night mas. My only concern for mas was potholes along the route – the sun would have been completely down by the time the band pushed off, so that was of no concern (the only other thing that was nagging in the back of my mind was that I’d have to wake up earlier than I’d want (after being on the road) to go catch a plane but whatever, I can sleep on a plane with ease).

I know it lil blurry but some of the “Monday Nite Jammerz”

I wasn’t alone in the band so I knew that we would figure out whatever we encountered along the way. I had no worries. there was 1 pothole that I went in by mistake that was a little jarring because I was standing and didn’t see it but other than that? no issues. I got home about 3something maybe? I really have no idea…

Woke up the next morning and “Party Done”. Carnival 2017 was over (for me). I’d had a great time and emerged unscathed. it was time to head back to reality. What did I learn from the experience? MS/Schmemess. Next time I adding at least one more fete to the agenda!

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