MS: Multiple Sclerosis, My Story...
I am a Trinidadian; I will use lots of Trini slang/words and will link to MY TT Dictionary as necessary but lime = hang out; i will use that a helluva lot!
so, like i said before everyone who came out had a great time! it required some of us to wake up much earlier than we wanted to on a Saturday morning but it was all for a good cause. I want to thank everybody for coming out again and also want to thank those who didn't but wanted to; i rhellycyah ask for more supportive friends/family. the jerseys turned out great - thank you Citttizen!! could not have done it without your support either.
Enjoy...
yup. i sprayed my hair orange just for the occasion
(Almost all of) d Limerz Crew
Once again, he eh get no T-Shirt!
OBs and Learls weren't at the walk but they sported their tees that Saturday am !
we had a great time. my t-shirts were a hit and there were actually more people to support me than last year, some of whom already told me to put them down for next year. Now! if only my photo tek outta will send me the pictures ;-), i'll post some.
ok. so, i went to Dr. Gilbert yesterday. first thing he said to me when he entered the room was, "so...you ready to make some changes?" "oh yeah, you know it" i responded. we talked about the length of time that i've been on Tysabri, he asked me if i thought it has been working to which i responded, "i suppose so because my MRIs look good and i really can't think of a time recently when i had any kind of relapse. i just wish it had helped my walking" but i guess you can't get EVERYTHING! so since i'd learned of the rebound effect yesterday, i asked him about that and i must say i was really surprised at his response. I expected to have a small battle about it with his blowing it off because it's not a proven phenomenon but instead he responded that he'll put me on 2 sessions of steroids 3 weeks apart to try and stave off anything because he wants the Tysabri to completely flush out of my system. so....bottom line?
i go back on 5/10 and 5/31 for steroids (i've done the intravenous steroids before and had good results (the pain that i was given it for went away)) so i'm hopeful (because ain't much else i can do) that these next 2 sessions will be ok and then my Tecfidera will arrive in the mail in early June
so then the nurse comes in to sign me up. she was very excited to hear that i'd already ordered the CBC ...if fact her exact words were, "thank you for being proactive!". in my mind, lady, u eh know the 1/2 of it; the less number of times that i have to be stuck for blood the better. Oh and by the way, i guess since las week friday was my last infusion, my body decided to go out with a big bang because boy did i make those poor nurses work!!! anyhoo, she went thru a few things with me...
how to mitigate and minimize the side effect
sign here, sign there
and get this...Biogen, the manufacturer, so wants people to use this drug that:
they have the copay program so that I only pay $10 and they will foot the rest with my insurance
if for whatever reason my insurance company says they're not paying for it, Biogen will give me the drug FOR FREE ...WHAT!?!?!?
i hope that most people will be able to take advantage and the fine print doesn't exclude too many people (because i'm sure there is some kinda clause somewhere). so it's official bye bye Tysabri, oh and they did a 3rd JC Virus test just to be absolutely sure and i was positive again, so i gone Tysabri, it was good while it lasted but all good things must come to an end.
Alright...ah gone so, ah rinse out allyuh eyes enuf!
i talked about whether it's better to be blissfully ignorant in my last post. i am convinced that that's the way to be - too much knowledge is a helluva ting; i've always felt this way.
i was reading another blog this morning and ran across something called the "tysabri rebound effect" - never heard of it before. let me just say that apparently there is no scientific research/hard and fast facts backing this up but still it's "out there"...
so essentially, some patients who came off tysabri reportedly experienced a HUGE relapse and shown increased lesions on their MRIs about 3-6 months after. great! is that something for which i may need to brace myself??? steups!!! doesn't make sense getting my panties in a bunch for something that i don't know for sure will happen but u catch my drift about being blissfully ignorant don't u?
The first time i'd ever heard this name was on the news on Monday(?). Annette died from complications she suffered as a result of Multiple Sclerosis. So, i decided to look her up and see what the complications were. i never found out exactly, but i did find this video and after looking at it, i really don't need to know what the complications were. Her story was heartbreaking and i wondered afterward if i should have watched it (even tho, i couldn't/didn't want to stop watching).
Every time i see things like this/hear other people's stories, i wonder...do i want to always be realistic and know everything about the disease and hear these extreme stories? is it better to be blissfully ignorant of what COULD potentially happen? the reality is that this is Multiple Sclerosis - at its absolute worst yes, but this is the disease!
take a look if you want; it's bout 10 mins long...
BG12 is now referred to as Tecfidera. As i mentioned before, i go for my "juicing up" on Friday and even though i won't see my doctor, i'll either see A doctor or a nurse practitioner so i'm definitely going to get as much info as i can from them and if possible start the ball rolling. a complete blood count must be done prior to starting, so i'll suggest to whomever i talk to that they might as well order it.
My findings:
there's no waiting period after stopping the last therapy before starting it...that's good. that way i can start it sooner rather than later because the Tysabri won't have to be out of my system
there is a $10 copay program. the site states that there is no income requirement, no time limit and no waiting (enrollment can happen as soon as you go on it); this is good news...hopefully alot of people can take advantage of this
moderate level of alcohol has no effect on it or it's workings. WOOHOO!! it's no secret that i enjoy beverages of the alcoholic kind :-) the day that i am told that i can no longer drink is the day that this shit will become unbearable. the question of how the drug will interact with the alcohol is MOST important - i don't care, it is what it is
it appears that the most serious side effect of it is that it could cause a decrease in the white blood cell count (nothing in life is free) and the most common effects are flushing, itching, redness, rash and nausea, vomiting, diarrhea stomach pain or indigestion - goody! these also may decrease over time...but i'll take those over a fatal brain infection any day...I'll be adding a little blue pill to my pill box regimen :-)
so my recent "happenings"...my right thumb moves on its own. just a small movement, like a (continuous) flicking motion (about 2 mm or so). last week when i started noticing it, it actually happened all day long from that moment. it's also quick movements too...it's annoying but nothing else. actually, honestly it isn't happening as much anymore. is it the MS? hell if i know, but it insist on hanging around, so it's getting blamed! it's extremely annoying when i play this game on my phone because i would position my thumb where i want a ball/thing to drop and then my thumb jerks and the thing goes where i don't want it to go - steups!
One of the reasons that i stopped writing for those couple months too is that i got tired of writing about being sick and falling! remember i said at the beginning of 2012 that i would keep up with my falls? well i did and it actually was 12 - i think...i'm almost sure it was 12 (ugh! great! 1 a month). i was doing rhell good this year, for the most part, and then fell twice last weekend. so far for this year it's been 3 but i can honestly say that i can only blame the MS for 1 - the other times, i was doing shit that i should not have, altho maybe without the MS, i woulda been able to "catch myself"? i'm not keeping up this year (it could get depressing after a while) but it has been 3 (off to a bang up start).
i go in for infusion #38 next week; i plan for that to be my last - WOOHOO!! i won't be able to start the ball rolling to go on BG12 (it actually has a new name now) i don't think because i won't actually see my doctor but i should be able to get all my questions answered so that i can hit the ground running when i do see him in May. We've already spoken about it too so I expect no surprises/push back/pressha from him; he actually wants me to switch.
anyhoo, ah gone so...have a great weekend everyone!
so my left side, for whatever reason, is the more MS afflicted side.
i drag my left leg, it's always the stiffer one, it's the one that i have more trouble to lift (say to get into a car amongst other things).
My left hand is the one that likes to curl up and give me shit to open.
nothing really going on with the right arm or leg.
I'm not sure if i mentioned that my last trainer decided to ups and leave GA and move to NY, so at the end of the year last year i was desperately looking for a new trainer - almost reaching panic stage because:
that arthritis (?) ad kept playing in my head, "a body in motion, stays in motion while a body at rest, stays at rest - they are trying to encourage people with arthritis to stay active and get on some pill - and i really want to stay in motion
will i be able to afford a new trainer??? i was getting a friends and family deal with Rhonnel!
well, say what you want about Facebook, it's good for some things, i finally got a trainer who i could afford. So i s'pose everybody does things their way and would you believe that i've discovered, working out with her, that my LEFT side is actually stronger than my RIGHT?!?! who woulda thunk it? certainly not me! wow!
onto the 2nd thing...who out there knows exactly how tall a chair must be for them to be able to sit on and get up from it easily? ME, that's who! i've discovered that if a chair is 18 inches tall, i can easily sit on it and when it's time to get up, i don't need any help whatsoever - woohoo! Don't get me wrong, it's not that i always need help with other heights, it's just that 18 is the magic number :-)
Trinis are very proud of where we're from and who we are as a people.
Here in Atlanta, the ones who are in constant contact with each other support one another as much as we can and it's always like that, for the most part. as a result, this year i was thinking, "hmmm...wonder if there's a way to get my shirts for the walk from home/support a business at home this year". the wheels started turning and i did just that; found a way to connect at home to get them straight from Trinidad. in the middle of the planning/trying to make it work, I got an email from B (who lives at home) asking me if i'd gotten T-Shirts for the walk this year already and if i had, he had something in mind that maybe, i could think about for the future. As it turns out, my original plan was only half going somewhere so i decided to work with B.
After some emails back and forth, the "marriage" between Stax and cittizen™ occurred. cittizen™is "an apparel brand celebrating and commenting on all things Trinbagonian" and as you can see from their logo on their site, the focus is on "trini centric apparel". what better company would i, a Trini living away from home, want to work with to create/produce my T-Shirts.
You may have noticed their logo at the top of my blog; it actually links to their website. Make a visit and check out their garb; i've already seen one that i want. it's a picture of the red, black and white fingerprint - daiz BOSS.
BG12 was approved...buh bye ominous threat of brain infection (that i may not even know i have), hello possible nausea, diarrhea and stomach indigestion. lol
seriously, now on to the (possible) fun and games to get on it.
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.
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.
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.
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!!
so many things to write about but i just havent had time....it's been a really, really busy last few weeks.
i've had this feeling in my left (of course it's that more affected left side) arm for a long time..i'm not sure how else to describe it, but a feeling. you know how when u hit ur funny bone and u get that weird feeling? it's not pain, it's not an itch...it's just a weird feeling. well that's what i've felt...and, what i noticed was that when it got more intense, that's really when my left hand would act up; it starts to clench up and not for hell could i open it unless i pry it open - great! well, i've been living with that for a while - told my doctor of course, but as usual i just chalked it up to one of those things and there were times that i didn't even notice it (actually, i'd spoken to another MS patient once and she said that she has the same kinda thing - it's such a good feeling to know that it's not just u). anyhoo, about 3 weeks into November the feeling became PAIN!!
oh great! the pain felt like...u know when a muscle is about to cramp up and u jes know that if you stretch it in another direction or something, it won't turn into a full fledged cramp? well yes thats how the pain felt; problem was that i wasn't sure exactly how to position my arm for me to get some relief. it would happen, but it wasn't something specific that i was doing - i would just get lucky. the pain was most intense at night but once i got into bed, it would ease up...well, i didn't do anything about it and went to the MSCA on 12/18 for my infusion. when i told Beverly the nurse practitioner, about it, she decided to administer (intravenously) some steroids. i was skeptical (because of course, it's steroids) but she made me feel okay about it and i must say that the pain just disappeared. I saw my doctor later that day and he actually prescribed some more (oral) steroids for me to use if i wanted (i left for home 2 days after so couldn't go back for the 2 additional doses of IV steroids that they would normally give) but i actually didn't fill it because i've heard horror stories bout the oral drug. MS! gotta love it right? wrong! but i do have to live with it.
anyway, so i'm home. i'll probably try to post once or twice again but please don't hold me to it; i'm not making any promises. allyuh hol it dong until i return or post again (maybe)
oh, just in case i don't...
i hope Santa brings u all everything that u asked him for :-)
Before i continue, let me publicly thank Krista for her 2nd to none introduction of me that nite...i was appalled when it occurred to me later that week that i didn't thank you on stage (gasp)!!
ok...so as i said before, the nite was a very good nite...we had good fun.
My mask was handmade by Sdee and i asked her to use orange to represent the MS and all the feathers are on the right side - my stronger side - to balance out the weak side most impacted by the MS. I've posted a few pictures below but see the full write up and all pictures here on Trini Jungle Juice.
A collage of me that was placed by the door
My table centerpiece
MSCA representing!
lol! Nige had a GREAT time :-)
We nicknamed him "the cat man"
I really thought that Rhoms won the "most unique mask" contest
1st generation
2nd generation
U cyah really make it out, but G is in this picture
