Thursday, July 28

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. 


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

Thursday, July 21

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'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!

Thursday, July 14

Lemtrada - The Drug

It's prolly the strongest drug out'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.

Thursday, July 7

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...