Tag: Uncategorized

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!

Follow Me

Get the latest posts delivered to your mailbox: