New Site

I've moved...check me out at www.msxats.com

• new look
• new feel
• same ole lime...

Lemtrada - Next Rounds

this is going to be a short post. 

Just wanted to let allyuh know that Lemtrada Round 2 is next week Wednesday.  I got lucky.  when I found out that it was going to be in October, I made sure that it could be scheduled after Columbus Day so I wouldn't miss Miami carnival again because of it.  turns out that was a non-issue though cuz I'm not even going.  anyway...

it's 3 days this time so I'll go in next week Wednesday - Friday.  remember, each day starts with an hour long steroid infusion and I truly believe the 5 days last year is what made me sick afterwards.  I'm hopeful that this time with only 3 days, I'll be okay.  I've had 3 days of steroids before without issue, so why should this time be any different? right??? time will surely tell...Also, u know that my hero days are over, so I'm on leave again...actually don't go back to work till the 24th.

so. I may be missing in action for the next couple weeks...if I am, you know why.

The Story

In my last post, I mentioned that I had a story about me and the scooter in the airport.

So a few years ago, I went to Houston for a weekend. Every time I travel, I go to my gate and get a gate tag to attach to SS (it's  pretty much a baggage claim ticket if u will - one piece (with a number) goes on the scooter and I have another (with the same number)). I roll down to the door of the plane, board and trust that the ramp people will take the scooter to the hold of the plane and I'll reverse the steps when I reach where I going. Well...

The plane landed in Atlanta and as usual when everyone had gotten off, I started making my way to the door and the air hostess said, "just a sec; ur scooter's not here yet." Ok. No worries. I'll just sit in front and wait; they must just be running behind. However many minutes later she started calling around to find out what was happening and that's when we found out that "I'm so sorry miss O'Brien but ur Scooter is still in Houston."

 

A wheelchair came for me and took me to the Delta office where I was asked to wait because the scooter would be on the next flight to Atlanta that was coming in an hour or two later. "Great"

• Now I like traveling eh but when I'm on my way back to ATL, especially by the time I land, all I want to do is get home...GRRRRRR! The one silver lining was that it was about 11am; had it been late at night, I woulda be rhell pissed off.

So the time passed and a man walks in and said. "Good news. The flight just landed. Tell me what it looks like and I'll bring it for u". I described SS and handed him my gate tag. Half hour or so later he still hadn't come back. Atlanta airport is too big for its own good (if yuh ask me) but it eh dat big...I knew something was wrong. Sure enough he came back scooterless. Here's what happened:

• Let's say I boarded in Houston at gate 12. My plane left and SS was still parked at the end of the jetway at gate 12. Meehknow when the delta agent realised it didn't go anywhere and knew that she had to get it to Atlanta but another plane landed to pick up people to go Phoenix from gate 12. Allyuh believe that it was then the ramp people decide to put the scooter on the plane at gate 12???? So I was sitting in Atlanta waiting for a scooter that was on its way to Phoenix. 

I eh go lie. When the man told me, I was so confused - wait...wha? no scooter? what u rhelly want me do now??? The delta agent in Houston couldn't stop apologising. They gave me the wheelchair (I said thanks but I cannot use a chair at all so it was of little use) and at 9pm that night, a driver appeared with my scooter. I got money, I got apologies and I got (even though I had to ask for them) miles.

Luckily that was the only bad experience I've ever had and hopefully I'll never have to go thru anything like that again.

MS Wellnes Expo and...

A few Saturdays ago I went to a wellness expo hosted by the MS society. Was a good use of my time - heard some things I already knew and learned some new things too. There was a neuropsychologist there from Shepherd Center who gave a familiar story about his first MS patient.

• The guy had a huge yard and he always used to go out on his riding lawnmower and cut his lawn every Saturday morning starting at 10. Enter Multiple Sclrrosis...well he simply refused to give in to the MS and every Saturday morning at 10 he would start mowing the lawn. And then every Saturday afternoon by 1, his wife and kids would have to bring him in and lay him down to cool down. He would be of no use to everybody (including himself) for the rest of the weekend. Eventually, of course, he had to stop the madness and make a change. Dr. Rob's point tho, was that one of the most important things that we need to do to deal with our wretched disease is listen to our bodies and make changes to our lives/lifestyles (even though we may not want to) where we have control. I can't do anything about the lesions on my brain/spine that affect my walking but I can use a scooter to get around when a lot of walking is involved. 

Speaking of scooter...Soca Scooter has given me 4 long good years. He lime, he wine, he fete up a storm, he is my partner in crime at the airport (I have a story bout this for allyuh)...we've been thru a lot together but alas, I think that I may need to retire him soon.  

• The seat is busted and oozing sponge in a few places
• I've thrown out one rubber handle and the other looks like it was in a fight with a shark (I have to keep it tho cuz my cup holder won't work without it! it's glued together)
• and I think his chassis is slightly bent

Originally I was going to run him to the ground but I have a vision in my head of my driving along minding my own business somewhere and he just stops...and then what'll be my story - not a good idea. The one vendor at the expo in which I was interested was a mobility store where I found my next scooter. It's a folding scooter and so essentially it collapses with a click of a button into something a lot like a carry on piece of luggage. One "problem" with this one is that the top speed is 4mph; Soca Scooter is 5.  The difference between 80 and 81 mph, I may not notice but 4 and 5?...ugh! but clearly I'll need to get over that fact at some point. Hopefully this one will also be able to lime, wine and take jammin like good ole Soca Scooter.

let the good times roll...

 

Damn u MS...or Stacey (maybe)

I'm not a stubborn person usually but when it comes to the conflict between me and the MS with respect to the sun and heat I am stubborn to a fault - ALWAYS. Last week Monday morning I went to a rooftop breakfast fete - this fete tho is not ur typical breakfast fete in that it starts at 8am. There's a covered area and a section that's open. Do I try to lime/stay in the covered area? Never. In fact last year ASal asked me if I wanted to get out of the sun (it was still earlyish and it wasn't bothering me yet and I remember scoffing at her wondering why the hell she would suggest that; she was asking from an MS perspective - MS wasn't even on my mind...I'm stupid, I know).

So I usually get there between 8 and 9 so no problems then but by 11/12 it's a whole nother story! This year, the open area had sheets of fabric draped over to offer some shade so I sought refuge there but still I was hot fuh so. I could barely work the controls to reverse the scooter into the shade and by the time I got there I was seated for most of the rest of the party.

Every time I stood, I had to be helped up. The other thing I noticed is that I couldn't speak loudly at all. was like every time I spoke to someone I was whispering - which makes no sense when u trying to shout into somebody ears over loud music. I was completely drained of strength/energy. Steups but will I stay under cover next year? No promises

I took a really long time to cool down and get back to normal...in fact I don't think it happened till I reached back home.  I ate a plate of food and went straight to bed...slept straight thru till Tuesday morning...but it's okay - it was all worth it kinda/sorta...party was nice!

4 to 1

So when I moved into these apartments, I lived on the 4th floor. It was okay because I also parked on 4 so was a lil walk to my apartment. I had an exit plan in the event of an emergency (u know - having to get from 4 to 1 if the elevators were out) although really and truly it had flaws but luckily I never had to test it out. Last year when the lease was up I moved down to the first floor. The move was good for me for a few reasons:

• This escape route has fewer flaws and will most likely work...plus, I'm already on the ground
• First has hardwood floors - walking on plush carpet or rugs makes me feel very unstable - the harder the surface, the better for me
• Speaking of carpet - there is carpet in the bedrooms but it's not as "plush" as on the 4th floor so...turns out even that was easier to walk on. 
• I could just drive thru the gate and park (at the time of course) - The drive up and down to 4 in the parking deck was a pain in the ass. I have mentioned here before that the constant stop and go of traffic is pressha on my legs so can u imagine driving either up or downhill around corners, maneuvering the parking deck and all its other cars?!? And then even after I parked, I had a walk to my apartment that sometimes seemed like a mile. 

 

Of course...there's a story - u knew there had to be at least one.

I asked the management to convert my shower to an accessible one. There originally was a shower door but since they converted it to an accessible, I had to put up a shower curtain. One morning I went  to bathe with a new cake of soap. Don't ask me exactly what happened or what I was doing but said cake fell out my hand and landed square on my right (trust me this is important) big toe. It hurt like hell and by reflex my right knee bent. Of course everything happened in a split second and before I knew it I was literally falling out the shower. The soap fell on my right toe, my right knee bent and because of the direction I was facing I crashed thru that shower curtain and onto the ground. STEUPS!! All in all though, it was a "good" fall..nowhere was hurt, no bruises and no long lasting effects...didn't hit my head either (a couple people have threatened to buy me a helmet - heeheehee)

Anyway, was a good move and all's well that ends well and thank God I still haven't had to try out that escape route.

Stax

My Vibrating Machine

Settle down...This is a PG blog ;-)

My OT made me use this first. It's a machine that (u guessed it) vibrates that helps patients with spasticity. My left side is spastic - it's the reason that my left hand curls up and the leg gets so stiff. The word that the therapists use to describe spasticity is "tone". So the vibration machine is used to break up the tone in my body. 

Personally I feel that should be re-evaluated cuz isn't that one of the reasons i'm in the gym at the crack of dawn every Tuesday and Thursday morning? to tone up?  now u want me to break my tone up!...anyhoo, i digress.

Not the one at Shepherd Center but u get the drift

The platform u see there is the vibrating part and my OT had me place my hands on it for a few minutes. It felt weird cuz it was going at HI speed/second in my book. Did it break up the tone in my hand and make any difference? Yes. A little...as soon as she stopped it. Wasn't anything to write home about tho. A week later, my PT suggested I stand on it. Now.  I eh go lie, I was a lil skeptical because I was unsure of how I'd function after being on it. If my quads get massaged or stretched too vigourously, my walking is all out of sorts so all the vibrating on the legs? Hmmmm I wasn't sure. Anyway, I stepped up and she turned it on. The shit had me scared. The vibrations were so powerful that try as I might to keep my legs relaxed, i couldn't. I mean for most of the time I was on it, my body was straight as a pin. I was very leery, but push come to shove, I had Soca Scooter so I guess I won't walk as much if things go to shit. 

Well. Lemme tell you! I got off that thing and took a step and allyuh! It was the most normal I'd felt in however many years that I'd been using walking aids. It was AMAZING! I couldn't believe it. My PT even remarked that my movements looked smooth and effortless as I walked around the room. Unfortunately that was my last PT session. I didn't know how long the effect would last but I was sure it wasn't going to be forever so...I bought one for here.  It's not as powerful but it certainly does help with the stiffness of my leg - usually i need help to bend it (especially if i have to sit in the front seat of a car) and that task is so much easier to do now.  I definitely notice a difference.  used to be that if i was lying on my back, it was pretty much impossible for me to bring my knee to my chest on my own.  while using the machine?  not a problem for the most part.

By the way, yesterday I got the call from Shepherd Center that they received my prescription for PT/OT and by the way "just need to make sure you know that there's a waiting list...and right now, it's taking about 2 months to get in". so here we go...playing the waiting game as usual for all things MS.

hol it dong...Stax

Physical Therapy

I've had some physical therapists over the years. I went to 2 or 3 facilities and ended up stopping each one for one reason or other. Some years ago, I discovered "home health care". Up until then I had no idea that even existed - I guess it's not until u really need something and start poking around that u really realize what's "out there" - and for whatever reason, I decided to do in home PT.

A side note: I've had 2 in home therapists and dealing with the 2 of them (and a few other in home health workers) convinced me that the majority of them are crackheads/sprangers/knuckleheads/insert whatever word u prefer to use here.

I stopped using the first guy right when I started declining 2 years ago and the 2nd? Well after 4 sessions I never saw him again - go figure! He was a waste of time anyway so I never tried to track him down either.  I met the Bioness rep to get my bionic foot at the Shepherd Center. Shepherd Center is a very well known, highly recommended brain and spinal cord injury rehabilitation center here in Atlanta and while we were organising, she asked me if I had a therapist. When I told her no, she suggested that I try to get in right upstairs at their MS Institute - in her opinion, the best in the state, maybe even the nation. I took her advice and asked Dr. Gilbert to get the ball rolling. When the Shepherd Center rep called me to confirm everything she warned me that the wait for PT was a 6-8 weeks.  Wowzer! Oh well I best get on the waiting list...i'll get pick at some point. Wouldn't u know it a week later I got another call to schedule appointments - fella said that patients requiring Occpational Therapy and PT get priority. Sweet! OT wasn't even on my mind, Gilbert just wrote the script that way. 

Each time I chose a PT, I'd do so after reaching out to the MS Society to find out who they'd recommend cuz maybe the person focused on or was interested in MS patients (cept the in home people - u jes have to take what u get with them); turns out that each of the therapists i chose had a friend or family member with the disease so they were familiar with it. Well the Shepherd Center has an MS Institute - MS is the therapists' only focus. There are so many machines and gadgets in there and I was exposed to so much - I'm really happy that I took the Bioness chick's advice.  I'm on a break right now (unlike before, not my doing) but a new prescription was just faxed in.  Only problem with that is that who knows if I'll be lucky again and be bumped up to the top of the waiting list - I'm not given first preference just because I was there before - oh well...as usual, all I can do is wait and see...

I gone so...allyuh have a good weekend. 

P.S. More to come on my PT experience. 

My Bionic Foot

I'd seen the ads for this product before but never dug into the benefits of it. As my walking took a turn for the worse, I started looking into it and eventually i had the opportunity to get a free evaluation, so why not go check it out.  During the evaluation, I could actually feel the difference the thing made. Essentially it's a cuff (with two electrodes) that goes around my left calf and it stimulates the nerve that makes my foot "work properly" - meaning in the heel to toe action. Without it, most days, my left foot just drags as I try to move the leg to take a step. The device is made by Bioness and they actually produce 1 for the upper thigh (stimulates a nerve in the leg - don't know which one as I wasn't evaluated for this), one for the hand (I didn't see results as drastically with this one) and the one for the foot.  (Anyone want to take a stab at why the ass this font changed???)

It's a 3 part device. There's a sensor in my shoe - at this moment it's in my sneaker (it can only work with shoes that have a strap around the ankle (ladies, a sling back shoe) or a whole shoe) - the cuff is secured around my left calf and I have a small remote to control it. When I'm ready to move I place it it "walking" mode and when my weight is off the sensor, it senses that I'm ready to take a step, I feel a tingling sensation and my foot "kicks" into action. It doesn't allow me to walk further (cuz my legs still get fatigued) but it sure makes the act of walking less laborious for me so i definitely walk vs using the scooter when i can.  There's also a "training" mode where it stimulates the nerve without the sensor so my foot moves up and down on its own but the idea while doing this is that I actually move my foot with it (so in a sense I'm retraining my brain and foot to work together to get the foot moving properly). 

My "problem" right now is that I really have to find other shoes with which it'll work. A few months back, I had to go somewhere that required a dress and I wanted to walk vs using Soca Scooter. I had to make a decision - a dress (I'm short so I only wear short dresses) and sneakers or jeans with sneakers...what to do what to do?!?! In the end I wore the dress because that's what the occasion called for but it was still kinda weird. So I have to buy some new shoes. 

Why my bionic foot u ask? The day I got it, Learls and OB were here and that night as I was walking into my bedroom, she looked at the way I was walking and said, "u doh have on yuh foot?"  It became "my foot" and when 1 of my aunts called and said, "I hear u have a bionic foot!" Well.  How do you refer to it as a "Bioness device" after that? :-)

Never Say Never

They say "never say never". Well now, I guess I must agree.

I've said multiple times - including right here on this blog - that I'll never go home again for Carnival. I mean:

• I cyah play mas (my biggest reason)
• I shouldn't be in heat/sun - steups 
• (being on the scooter) Is never a good thing for me to be in crowds
• I love my country but let's be honest, a lot of places are not so Stacey-friendly

...wha's the friggin point of going?  

Well EVERY year without fail, I's just be oozing salt when everybody talking bout when they leaving, who they playing with and of course, there's Facebook; one will have to dig out one's eyes to escape the status updates, pictures, random videos and various articles...and then...there's the music! Sigh! Sigh!! 

• We always joke that as "people in foreign" we know the music (words included) faster than the locals cuz we are so bloody hungry for it here. 

And can u tell me why in EVERY picture EVERY SINGLE PERSON must be smiling, looking good and having a good time? Nobody has a off minute when the picture is snapped??? Meanwhile, my ass sitting here working and is 4something degrees and possibly snow on the ground. This year I tortured myself until Friday evening when I logged off. I didn't look at a non Bank of America device until Ash Wednesday.  Well...NO MORE!

I actually don't care about any of the aforementioned bullets. I'm at the point where I just want/need to be in the country. Asal played Monday night mas last year; it was an affordable, all inclusive band that was Stacey friendly enuf cuz it was small and guess what? No sun (I know I'll still feel hottish but it should be ok). In addition, at that time, it was actually the only band - she had a great time and Monday night mas was a good time eons ago before I left home - I in dat!  I will also do my due diligence to see if I can go any fetes...if not, is no scene, cuz I'll be home.  I figure nothing wrong with at least trying it once.  If I go and I determine that maybe it wasn't such a great idea, then I'll hadda regroup.  if I don't go, I won't know. 

Enjoy!

 Anyhoo, so ticket already bought...I'm going for a week - can't wait!

Why Lyft

I planned on going more into my use of Lyft and then I heard a story on the news the other day that tied in very well...lemme explain.

So here in the US, there are ride-sharing options to use when u need to go somewhere. Essentially anyone who owns a car can sign up to be a driver with whichever company and thru the company app, when I'm ready to go somewhere, I input my destination and pickup location and the nearest driver (I suppose) accepts the request and comes for me. i get a picture of the driver and their car, they see a picture of me...easy peasy and they're cheaper than taxis or a car service by far. In Atlanta, the options we have are Lyft and Uber. When T-ster suggested using Lyft, I was a lil skeptical because I'd used Uber previously and had a "not so great" experience both times (nothing to do with accessibility). But! Winter was winding down and I was ready to get out of...I did some reading and got the app. In so doing I realised that I could set up a handicapped profile (and request an accessible vehicle) and there's a clause on their website that states that drivers cannot discriminate against disabled passengers - this kinda put my mind at ease (plus I couldn't find anything similar on Uber) and I was ready to take the plunge. 

The good thing is that I don't need an accessible vehicle; Soca Scooter breaks down and fits quite comfortably in the trunk of any car. When I requested my first few cars, I used to give the drivers a heads up by text "hey I'm in a mobility scooter ok". Well that stopped when one chick responded with "oh. U need a bigger vehicle then, I'll cancel so u can get one". I couldn't tell her that I certainly didn't -  allyuh eh want to see me get into ah SUV...it's not ladylike/pretty/graceful AT ALL; on top of which, it eh the easiest thing for me to do. I try to avoid them at all costs.  My experience so far using Lyft has been great - all the drivers I've encountered have been helpful when I needed them to be and I've not gotten any complaints/run into any issue (they mighta been cussing me fuh so on the inside for having to haul the scooter in and out the trunk, but i saw no signs of it)

• One lady had a trunk full of ferns she'd just bought but she did some rearranging and we were on our way.  So...use my link if you ever decide to use them - i believe we'll both get some kinda credit or something.

Now...bout that news story. A blind person with his service dog and his friend requested an uber driver. Story went that the driver pulled up, saw them, told them he couldn't take them and drove away. Apparently the driver said (to a reporter after) that his daughter is allergic to dog hair and that's y he couldn't take them and he drove away to go read Uber's policy. Woulda be nice if he'd explained the situation to the people - not the reporter...after the fact. who knows what really happened?

I'm not stupid, I know that anything is possible with Lyft and their drivers too, but for just a split second, I thought "yup...looks like I'm using the right company"

alright, i gone so...have a great weekend!

Lemtrada - The Drug

It's prolly the strongest drug out there...it's also the most expensive one I've taken. When I opened the "cost" statement, I swear I almost fell off Soca Scooter - the length of time for approval suddenly made sense. The simplest way to explain how it works is to say it depletes the Tcells in the immune system. The thought is that when the immune system regenerates, it'll be with "good" cells that will not attack the body and in turn cause nerve damage (it's actually a drug that's been on the market for a while but was repurposed to treat MS).  So for a while after treatment, I was sure to protect myself best I could from getting sick/catching anything cuz there was no telling if/how/how long i'd take to  fight it off (so jes in case, I didn't go Miami carnival last year) and my doc had me on anti-viral drugs till January.

Of course, like all the drugs out there, it comes hand in hand with its laundry list of side effects. I won't bore u with them but I will tell u that a nurse comes to my apartment monthly to collect 4 (sometimes 5) vials of blood and a cup of urine - this will continue for 4 years. Oh. I will mention that Lemtrada may cause an overactive OR under active thyroid. For the life of me, I can't rationalize how it could cause ONE or THE OTHER...shouldn't it only cause one??? 

• Not trying to put goat mout(h) on mehself, but with my luck if I were to develop one, it would be under active and I'll gain weight

On the last day of treatment I called my manager to let her know that all was well and she commented that I sounded better than I had in the previous few months. Interestingly, 4 other people said the same thing to me and looking back I realised that it had actually been a stressful few months leading up to the treatment.

I got a call from Robyn at the MSCA bout 2 months ago and she said that lab work showed that even tho my numbers were increasing, they weren't increasing fast enuf so they wanted me back on the antiviral drugs. "GREAT!" She assured me that I didn't have to be concerned; it was just a precaution. 

Good news though - I had a physical done 2 weeks ago and my blood count is now back to normal...till Octoberish (when I go back in for round 2) - "happy happy" times.

The Lemtrada Process

Last week was a rough week work wise...gihmeh ah bligh for not posting.

Since my diagnosis 11 years ago, I've actually been on 5 disease modifying drugs and there was always one reason or other for changing. Last year in February my doctor suggested that I'd be a good candidate for a new one that actually had years of trials backing it. We discussed it; I said sure. I'll post next about how Lemtrada works but for now, I'm just going to talk thru the process of getting it. I took my last gilenya pill at the end of February cuz he figured (he wasn't completely sure at the time) that I'd need about a month drug free so I could start Lemtrada in April. It is an intravenously administered drug that is done over a period of 5 days. I gave my manager a heads up because I was thinking that I'd need to take leave cuz who knew how I'd react. I was ready...HAH!

Well...I had to be approved - so the insurance company had to be contacted and they would provide approval. Alright...couldn't do anything but wait...every 2 weeks or so I'd get a call from my doctor's office to report "nope. No approval yet" and then in July the call update was"okay, we are a go" By then I was in another position (I'd actually transitioned in May (and not by choice)) and the entire situation forced me to have the "MS Conversation" much sooner than I'd wanted. Luckily though, my new manager was understanding even with/in spite of all the uncertainty. Honestly, I don't know whether or not anything was different (symptom/disease wise) for all those months, but I was ready to be on something again. I had to do preliminary blood work and I'd be on my way. Of course nothing is ever easy in my world. The results showed that I'd never had chickenpox and having chickenpox antibodies is a MUST before going forward. Ok. No problem...that y there's a vaccine right? Right...but...after being vaccinated, the antibodies aren't generated for 6 weeks so yeah, u guessed it - I had to wait another 6 weeks to begin the process. Did I mention that 2 of my aunts were coming from out of the country to be with me. It's expensive enough buying a normel international ticket - leh we not get into when u hadda buy it last minute cuz we jes weren't sure when this thing was actually going to happen. Finally, on Sept 14, I went in for my first infusion. 

That first week consisted of me and Rhoms going into the MSCA by 6:30/7 am at which time I was hooked up and given IV steroids for an hour. When that was done the Lemtrada was hooked up at that took a loooooooong 4 hours to completely drain. After that, I was observed for an additional 2 hours. It was a complete work day. 

• As a side note: the MSCA nurses' process included inserting a new IV line daily - until they met me...heeheehee. After trying 3?(or 4) times that first day, they decided that maybe my line should stay in so that they wouldn't have to fight (and put me through that) everyday. 

The week actually went smoothly with no drama - it was just very long - but lemme tell you, boy was I happy that I'm no longer a hero and had the good sense to take an additional week off. I've had 3 days of IV steroids before and I'd never had any bad after effects but I guess 5 days was too much for my poor, lil body. Things started going downhill from Saturday evening and I didn't feel like a normal human being again until Wednesday. I was sick, I was weak, I threw up a couple times...was an awful 4 days. I will be forever grateful to Rhoms and Aunty B for being here with me. 

Good news/bad news...

• The good news is that I only had to experience that once
• The bad news is that my second dose of Lemtrada is coming up; most probably in October (this time tho it's only 3 days...i'll still take 2 weeks leave tho)

More good news...once I get my second dose - that'll be it. Stay tuned for how it works...

Stax

Stax 4 Part Deux

Before I start writing this post, I hadda say that I'm not writing in any order here. I'm just talking about the past year and if I have anything current to include, well that'll happen too.

The dream of Stax 4 being an Infiniti coupe remains and will always be just that...a dream. 

Had a real nice picture to insert are but either my dinosaur of a laptop, blogger or both of them together were fighting me so u hadda picture me in a deep, red G35 coupe - i look good eh?

I haven't driven a car since May last year. OBs was here then and one day as we got in the car to go wherever (or it might have been when we were coming out), it occurred to me that I was relying heavily on him. The driving itself is fine (unless I get stuck in traffic - the constant stop and go switching from pedal to pedal fatigues dem legs), it's the simple motion of hauling my left leg in the car after I'm seated and reaching to grab and close my door - that's what I can't do. (i'm beginning to really dislike Blogger - y is this text centered?  steups) Lemme explain...my left hand curls up - ESPECIALLY when I need to use it - and I usually have to use the right one to open it up.  In addition to that, when I need the hand, my elbow doesn't like to straighten...ugh! So, I can't reach the door handle and AND I can't grab it to pull the door in. 

I don't remember what I did/how I spent last summer but I can tell u that when my hibernation period started, I wasn't mad that I wasn't driving cuz I wasn't venturing out anyway. But of course winter FINALLY had to done this year and I started thinking seriously about biting the bullet (I haven't had a car payment since May 2013!) and getting an accessible car - I knew that there was no way I could be stuck in here after winter was done, I'd lost so much independence because I couldn't drive. Well I called T-ster cuz I knew he could guide me. One day while we were talking, he said "Stax. Y u putting urself in this expense. U ever thought bout using Lyft?" Lemme tell allyuh...long story short, that was the best advice EVER. let's just say that from the first weekend (as nervous as I was, I was determined to get out), I've not looked back. Wild horses can't keep me in this apartment on weekends and I've regained much of my independence. 

Stax3 is still around. It's amazing how people come into ur life sometimes just at the right time. I've known this older couple for years - one of the first outside Trini family - but we were never really close or stayed in contact outside social settings. Unfortunately it took a very sad event to bring us together, but they currently drive Stax 3 and do some other things to help me out just when I needed to find someone. I do miss my car and driving sometimes, but wha ah go do? In these instances, I just hadda think about the "what if situations (if I drive somewhere...and there could be many (GASP!))" and I know that this is how it has to be. 

That's it for now...hol it dong.

Stax

Hi

It's been a little over a year.  I stopped writing because my disability was getting worse and I no longer enjoyed(?)/looked forward to(?)/wanted(?) to write about things going in a downward spiral. I think I'm at a point where I'm dealing with the worsened state and I'm okay with it (at the end of the day, I have no choice right?) and I actually want to come back - been thinking about it for the past few days.  So...how to catch up...plenty to talk about. 

First things first I suppose, walking with my beloved canes became more and more treacherous. Before I get into that I must say that I have no additional/new MS symptoms - my complaint has always been the steady decline of my walking (I'll get into details later) and it still is. Also, my left hand followed suit and curls up a lot (read "anytime I friggin need to use it") and so that just got progressively worse over time. My canes...I had to overcome a psychological hurdle and come to terms with the fact that I need a walker. I doh care what u call me, but walking with a walker sucks...I do it...and I do it with style ;-) but at the end of the day, it's a walker. I made the Soca Scooter my own and I still do (although these days the poor thing is making noises I never heard before) but there's no way to "jazz up" a walker.  I'll admit though, I didn't get the medical Grey one that u see people putting the tennis balls under, I got a 2wheel one that is black and grey with blue handles but guess what? Yup, it's still a walker. 

I NEED the walker...I cyah be schupid (it's just how we pronounce stupid), so I use it.  I think it's just a chounx wider than those other ones but it works for me. I do use Soca Scooter more now tho than when I walked with canes - sometimes walking doesn't make sense.  The other day I bought a tray for the walker so that if I'm carrying food (hell anything in my hands) I don't have to use the scooter in here.  There's good news too...I didn't have any bad falls before switching from the canes. So, I had to "hang up" my canes.  These days they just liming in a corner of my living room.  sigh! I do miss them

Alright...not going to give u everything in my first post so I gone so.  

P. S...Blogger has made some changes making me ketch meh ass to do this so bear with me as i get back into the flow of things.

This is It

Fellas,

We've come to the end of this road. These last 6 years have been great (didn't think that I'd even last that long) but I can no longer write about being sick - it's no longer cathartic for me nor is it something I can do any more. I know I left yuh hanging for the past few months and a few things have happened that I can share but...gimme ah bligh.  Know that on the MS front, i guess things are as normal as they're going to be.

I hope you all have a great Christmas with your families and loved ones - as usual, I know I will.  I'll leave you with some parang, Baron - Caminante.

Hol it dong, I gone!

Secondary Progressive Multiple Sclerosis

Well...

I wish I could tell u that it was simply the lack of exercise in trute OR like last year, was jes ah infection that needed to be cleared up and I moved on. No. Nothing so simple...not at all. I've officially crossed over the line from relapsing remitting MS to secondary progressive MS. the way I've been describing to everyone I've spoken to is "(for me) think about it like a stage 1, stage 2 type of deal". Most (most) patients are diagnosed with RRMS - so essentially the person experiences relapses (exacerbations) for some time and then things go back to normal (my eyesight issues in 2003 (before i'd been diagnosed) and weird happenings in 2007).  About 80% (naturally I would fit into that category) patients with RRMS develop SPMS. The major difference between the 2 is that SPMS patients experience fewer relapses but worsening disability - I really can't think of another relapse after 2007.  The medication I'm on (currently Gilly and in the past Copaxone, Tysabri and Tecfidera) doesn't cure the disease, it slows down the progression so one may presumably argue that had I not been taking anything, I might have crossed over the line sooner than now. 

I actually went to the MSCA on 9/2. Had an MRI of the brain - good news there cuz there's been no change. I'm going to do one of the spine in December and I'm really curious about how that one will look - as much as I would prefer no change, I hope there some kinda explanation for the past month and a half. In light of all my issues, I convinced dr Gilbert to prescribe a bout of steroids - 3 days of IV administration at home. I won't bore u with the steroid stories but they provided some relief altho not as much as the last time as I'd hoped.  Oh I'll tell u this part...the nurse came over on the first day and eventually left after 4 tries to get the IV line in because well the company protocol is that patients must not b stuck more. They sent someone else the next day and the third time was a charm for her. My veins never fail to provide "excitement". Steups!!!

Thru this all, I've been okay - I'm dealing because what other choice do I have? Of course I had to let everybody know and (I think) they're all feeding off of me so we're all good. Hopefully this won't cramp my style and I continue to go out and enjoy life although I've already missed one party (that I NEVER miss) because I jes wasn't feeling up to it. After the party, Assenna actually emailed me to check up on me and make sure I was ok because she I wasn't there (a warm and fuzzy moment for me, I eh go lie) :-)

Sometimes I wonder if I'm in denial about this whole MS thing. Why haven't I gotten angry? Why haven't I cried (because I have it NOT because I cyah play mas)? And then I think, "well. What the hell is all that going to accomplish?" I'll jes get my panties in a bunch and because I'll b stressing, my body will probably shut down and then I'll cyah move and get more frustrated and all that for what? For NAUGHT so best I eh bother. 

So I'm adjusting to this new level and trying to do things as "normally" as is physically possible - altho, it's been tough dealing with my decreased independence - and i'm afraid to try to do things because, well suppose disaster strikes?  I've already bought my ticket for Miami carnival - looking forward to jes being in FL.  This year, the plan was to play j'ouvert instead of going on the boat but I stickin now in light of everything.  I'm still learning this body and what it can and cannot handle - have bout 2 weeks to make a decision.  

I have another update but this post is already long enuf. I gone so!

Ah Shit...

AC cancelled gym last week Tuesday. When I found out, I smiled cuz Monday night (after limn on a school nite - those days of bouncing back fresh and chipper are long gone), I'd actually been thinking of canceling myself but didn't.  Dr. G was in town whole week and even tho reliving our glory days is out, I canceled PT and we limed again Wednesday.  Thursday morning, I turned at the sound of my alarm, snoozed for my usual 45 mins, woke up and said, "I really really eh feeling gym this morning nah" so I canceled. As I was drifting back to sleep, I heard a little voice in my head, "Stacey.  u know u're going to regret this."

Thursday nite, I struggled walking around this apartment! WDF???  I felt so unstable and unsure of myself that I used the scooter INSIDE here - something I never do. I went to sleep and right then and there decided that if I wake up struggling the same way, I wasn't going to work. Friday morning, I was moving around a little better and was about to get ready for work and I said, "fcuk it. I'm taking a "Stacey" day." Those of you who know me know how out of character that was - I don't even like to call in sick when I AM sick.  My wretched disease was kicking my ass tho so I figured it was ok.

I really really do hope that all of this is as a result of my not working out or doing any PT for the week and nothing more (it's happened once or twice before but never been this bad). I've since done my PT routine and I'm moving around better but I'm not my normal self really. Went out Sunday and made it back with no drama so that, at least is a good thing. Went to the gym this morning (i was actually looking forward to it and couldn't wait) and even though unfortunately the workout was a shortened one,  already some body parts feel better but did it actually make any difference?  time will tell i suppose.

 Being sick really is a bitch!

My Disability

I always just measured my disability by my struggles with walking; I never really thought of my hand as a contributor. It only dawned on me the other day (when I wrote this) that "wait a minute, the fact that I can't use my hand as I want to is a disability too". I swear I never thought about it before - call me stupid, but it is what it is - go figure! We do this thing at home - If u ask someone to do something for u, the person can look at u and ask, "wha'am? Yuh hand pok?"- essentially, the person is asking if something is wrong with ur hands that u cyah do (whatever) for yourself.  Well, I can actually answer with a resounding "yes" if anyone says that to me. 

Like everything else that i have going on, it's my left side and it happened over a period of time. I actually remember the conversation I had with Learls when I told her that "something is going on with my left hand now".  Pity tho, I don't remember when it occurred. Anyhoo, at the beginning, I would notice it kinda curling a little when I walked and even more so when my legs got fatigued. Then, it became really bothersome especially at the end of the work day because of all the typing I did - that's when I got the Dragon software. 

• Side note: I actually type with one hand quite easily in this new position.  I'm no longer developing reference material.  Now, I'm in numerous spreadsheets, so it's easy to just use my right hand but I do use Dragon when necessary. 

Well, these days, it's curled up tight on a regular basis, like curled up shut; in a kinda fist if you will. Now, I can pry my fingers open (with my right hand or sometimes I can actually open it up) and use the hand (somewhat) but it's as if its natural state is to be curled up in a ball - my PT has given me exercises to strenghen. As with everything else, I have no pain so it's just more a pain in the ass than anything.  It definitely contributes to my disability tho (how did I not think so before? Who the hell knows?). Try and do ANYTHING with ur hands while one is curled up in a ball. Go ahead, I'll wait…

pain in the ass right?  Ugh! Have I ever mentioned that being sick sucks??? :-) 

Having Multiple Sclerosis

Where the heck did I go and pick up this disease? Why me? Dunno that I'll ever get that question answered but with some luck maybe i will in my lifetime. Anyhoo having MS makes me feel:

• Loved - don't get me wrong. I knew I was loved before but the things people (my family, the inner,  outer & outer outer circles) are willing to do for me at a moment's notice if necessary, are never ending, unceasing and amazing.
• Resentful - I HATE MS and being sick
• Scared - I know no one knows what the future has in store, but I sometimes feel anxious because I don't know what this disease has in store for me and what may happen tomorrow morning when i wake up - hell what it could do in the next couple hours
• Like I'm regressing in life - the natural progression of things is NOT to buy your first house and then move out of it into an apartment. I know that it's to make my life easier blah, blah, blah, but…On the other hand, i do have a jump start on walking with a cane tho.  I once overheard 1 lil chile (i didn't know) tell another, "she's old."  yes - she was talking bout me.
• Tired - I get so tired, sometimes, of needing/wanting help. A few weeks ago, I asked G if she doh tire of helping me out. She said no but she does tire of my trying to do things on my own when I know that it may not work out (I don't do that a lot but...)
• Lonely - I've learned to lime by myself. If we're in a fete and everybody is doing the normal thing people do - walking around socializing, I can't/don't/won't in the scooter, so I'm by myself often. It's all good - I'm a cool person to lime with :-)

I really can go on...I keep thinking of words to add to the list but I'll stop - maybe i'll do another installment sometime; that's it for today.

As u were!