It’s been 5 months… I haven’t posted since July. It started off as a result of my being busy busy busy at work. For a few weeks back then, I barely knew my ass from my elbow because I had so much shit going on and then when things eased up a bit and I actually had time to publish something, my left hand started working against me and typing became the most frustrating/annoying/depressing/fill in whichever word you’d like here and so, I just stopped doing it (on my personal laptop). Remember, I have the Dragon software installed on my work laptop so things were much easier there.
A few weeks ago, it occurred to me that I could type on the work laptop, e-mail to myself and then publish using my Mac and so this is how I’m publishing today (how did this never occur to me before??? LOL)…i remember now too that i don’t like the white border that’s placed around the words when i do this – but small ting i spose.
so… Where to begin??? Bear with me, this may be long – it’s been 5 months!
Well lemme start with the medication. I don’t like Tecfidera; I really miss Tysabri and would like to go back on it. Tecfidera is the third disease modifying drug that I’ve taken – I’ve been on Copaxone, and Tysabri as well – and I can say with confidence that Tysabri was the best and my favorite. Now don’t get me wrong, I still have no side effects from the Tecfidera and it may be doing its job (slowing down the progression of the disease), but it does nothing for my general feeling of well-being and my disability has definitely gotten worse since I came off of Tysabri (which has shown to improve patient disabilities). I don’t trust myself as much as I used to, I’m not as confident as I once was (especially when stepping up) and my general feeling of well-being has definitely diminished. I’m still positive and upbeat but… Anyway, I go to see my neuro on 12/17 and will talk to him about this then. I went to see him sometime in August and decided at that time not to make any changes because I’d only been on Tecfidera for 3 months so figured I’d give it a chance… well its time is up! Like I said, I really want to go back on Tysabri but is that really advisable? I’ve been off it 8 months now; doesn’t that reset the clock??? (Using Dragon to type this is extremely frustrating – it still doesn’t understand my accent – FCUK!!! Using it for work is not this bad because e-mails at work are much shorter)
My handy-dandy scooter was the best money ever spent!! Unfortunately, I can’t use it when I’m on my own because it needs to be dismantled and placed in the car, but boy has it made my life easier on so many levels. As usual I went to Miami carnival this year. I’d decided from early on that I was going to take the scooter with me to go to a specific fete down there. Some of my friends who live in Atlanta drive down for the weekend and I was going to send it with somebody but at the last minute, I decided I would travel with it. Well let me tell you – that was one of the best decisions I ever made (in my life I think 🙂 ). I called Delta and found out what I had to do and braced myself for a trying experience – it was one of the easiest things I’ve ever done! First of all, I can’t say that I’ve ever seen anyone riding around in a scooter in the airport, but there I was riding up and down the concourse – just because I could! Going through security? A breeze!! Using the scooter gave me so much independence that (like I said), I was just riding all over the place, just because I could 🙂. It was also easier on my pocket because I didn’t have to tip anyone for pushing me around and when I went to Vegas in October, I saved $125 because I didn’t have to rent one. I want somebody to tell me I cyah travel with it in the future; I DARE YUH!! – aye allyuh, I not sure when allyuh getting another post because this is really friggin annoying – but I digress… then in the party in Miami, EVERYBODY (including people I didn’t know) was bussin ah wine on me and it – it was hilarious… a complete hit! Oh… And how could I forget, I even secured 2 (long story about why I have 2) cup holders for it – driving it while holding a cup was a lil difficult, so solved that problem!!
The masquerade ball happened again last month. It wasn’t as well attended as it was last year, but those who attended had a good time nonetheless. I must say, I was really touched by the number of folk who were there from the MSCA (including a doctor who’d only seen me once).
What else, what else… Christmas is nearing and I’m yet to get into the spirit but hopefully soon. I can’t think of anything else to write nah; I know I’m missing some stuff and will probably think of it after have published this but say wah, so it go sometimes. Besides, I don’t want to bore you too much for right now. So until next time, allyuh hol it dong!! I’ll be back – I promise
Welcome back!!
hmmm. u didn't like it either huh and now you're not on anything. sometimes i wish i could be so brave – to manage the disease in alternative ways. i eh go lie, i was afraid of Tysabri at first too (still am a little) but i meant what i said about absolutely loving it and feeling that it really was the best one i was on.
so..what ws ur experience with Gilenya? i really really want to go back on Tysabri, but i'll have to think of the cost involved if i do – it's a sonofabitch! and so, Gilenya will be my alternative choice.
I've been wondering how you are doing… so glad to read from you again! Sorry about the relapse… that bites.
I didn't like Tecfidera either. I stopped after a few months. I didn't experience any side effects I could name…I just felt different.
So now I am back to no DMD. I'm okay with that. I've realized that I do just as well with nothing (and sometimes better) than when I'm taking a bunch of meds.
Tysarbi scares me to death….
So glad to see a new post from you! I had a rollercoaster 3 months and didn't blog a single word…stopped Gilenya and guess Tecfidera is up next…don't feel up to it quite yet though!!! Glad you're doing ok!