Category: Random Thoughts

Wretched!

it’s my new “latest and greatest” term to describe MS these days.  between the situations that i find myself in sometimes and the stories that i’ve heard, i think that “wretched” is most apt.  i was in a funk last Saturday morning…without going into details, i just had to deal with a situation that got me thinking that MS can really strip you of all your dignity sometimes.  Even when you’re by yourself and get out of a situation, just the fact that you are IN the situation in the first place is enuf to send somebody over the the edge.

On the flip side, my mother (smart lady that she is) often says if everyone can put their respective diseases in a barrel, shake up the barrel and then pick whatever they want out of the barrel, 9X/10 they’ll probably pick the same WRETCHED disease that they had in the first place (kinda “the devil you know” type situation)….but i wonder, will i really take back MS?  maybe it’ll depend on my options…hell, do i really have to pick anything at all???

Anyway…Walk MS in Atlanta is on 4/13 this year.  Hopefully, it’ll be a nice day (clearly Atlanta didn’t get the memo that we in spring already because of these stupid ass temperatures) and we’ll be able to go out there and walk/scoot in all our glory.

the walk thruout the years…always a good time.

Ayeyayae!!

so…

there’s this company – we’ll call it ABC Drug Manufacturer – that controls the market share of MS patients because the drug they make is probably the “least worst” available to us.  “Surprisingly” they have been putting pressure on the FDA to stall the approval of BG12…hmmm, wonder why???

Well, let’s see…

  • BG12 is oral, their drug is a needle prick
  • They both have side effects (of course) but BG12’s are supposedly “more tolerable” than most
  • BG12 is supposed to be a more aggressive drug
  • hmmmm…
I’m not stupid, i know that they don’t give a damn about little ole me and it’s all about the bottom line but really???  do they really have to try and stick it to the maker of BG12 just because it’s quite obvious to us all that they’ll probably lose patients oops money because people will jump ship???
it’s just so unfortunate because there are so many patients out there just waiting (patiently because we have no choice) for this drug to be approved and become available.  
Now don’t get me wrong, i want/need for the powers that be at the FDA do their due diligence before approving but it soooooooo does not need to be about profit in these situations.  

March 27th

is supposedly the day that BG12 is slated to be approved by the FDA.
I’ve been gone for a long, long time.  truth is i was in a writing funk.  I started a couple posts and just was never able to finish them and i just didn’t know what to talk about.  i’m not sure what happened…guess i need to be rejuvenated; hopefully things will look up from here.  
anyway, i went for my infusion on Friday and was told that we should be looking forward to 3/27/2013.  at this point, my fingers, legs, arms and eyes are ALL crossed because boy am i ready to be off Tysabri.  BG12 is somewhat new and of course, there are risks with that, but i’m ready to shake this “brain infection risk” monster off my back – i say “somewhat new” because apparently the drug (or some form of it) is already “out there” for use by people with psoriasis – it’s new for treatment of Multiple Sclerosis.  
Couple things about that brain infection:
  • The nurse practitioner i was talking to told me that apparently they have found that the average month within which a Tysabri patient develops the infection is 38; guess who just went for #37!!!
  • Also, it’s possible for you to have it and NOT DISPLAY ANY SYMPTOMS (y can’t i ever spell this word on my first try) – WDF?!?! she was actually able to say that with complete certainty because there was a patient at the MSCA like that.
happy, happy, joy, joy.  so you can understand y i am so ready to be off Tysabri and get into something else.  On top of which, since it’s an oral drug, i won’t have to deal with anymore needles and small veins and my blood not flowing (when they have to take blood) and…the list goes on.

New Place

we’ve moved…i’ve always said that the only thing worse than moving is finding a new place to live.  well for this move, i used an apartment finder AND a moving company so both processes were quite painless.  of course when i submitted my requirements for the new place, i included a “walk in” shower and the fella knew right away where he would send me; as it turns out, that’s exactly where i am.

i thought that i’d have to be on the first floor and i really didn’t want that but as it turns out, this place has a parking deck, so the apartment is actually on the 4th floor.  it’s a nice place but can i just share that, i eh go lie, I’m ECSTATIC to be without stairs…leaving the house behind (we’re going to rent it out) was like closing a chapter of our lives – it certainly is the end of an era – but the night that everything was moved, i walked from my office to the kitchen to the balcony to my closet jes BECAUSE I COULD 🙂  It was a beautiful feeling that i really cannot describe 🙂 🙂

i’ve already christened the place – ugh and it was really odd.  i was actually standing, having a conversation with the cable man when all of a sudden i lost my balance and went crashing down – ayayaye!!  i apologised to him after because it jes happened with no friggin warning.  he also apologised to me for not doing anything because, poor fella, he didn’t even realise what was happening fus it happened so fast.

in other news…i had a long MRI done on 12/18 – a cervical spine and brain – and according to my doctor (when we were talking bout my pain), “well you look good on film…” so that’s good news; there’s no activity/additional scarring.  he also told me that he’s thinking that it might be March for BG12 (i’m not holding my breath, altho i do want to get off the Tysabri).

hope u all are having a great season; i sure am.  Nothing beats a Trini Christmas!!

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