16 posts tagged “copaxone”

The shots arrived.  It was shocking to me.  Copaxone always sent 3 months at a time.  A shot a day x 30.  This is such a change.  The starter box came with a travel bag that included a mini travel sharps container and a ice thingie.  Because you know, I travel soooo much.   Still, nice.  The autoject container is nicer than the bag my Copaxone one came in, it's plastic.  The autoject itself looks pretty much the same.  Now the meds.  I was like hmm are they even IN here once I got the autoject and the travel bag boxes out and the ice packs out.  Oh, what's this little bag, it's IN THAT?  For real?  12 shots, one month worth.  Ahhh if it weren't for the fact that I expect flu like symptoms, maybe hellish ones at first, if not the whole time on it, I'd cheer.  12 shots a month sound heavenly after 1 a day for years and years. 

Now I just need to decide, wait for the nurse, or start right in.  The autoject is just like the Copaxone.  I'd just be learning how to do it without that, which I've no intention of doing.  Also I'll stick to doing them at night so I'm not alone in case I have a reaction / so I have someone to do the ones that are tougher to do alone.

In other news, I found my marbles (no comments needed).  I should sleeeeeeeeeeeep but I might watch some of this MJ thing first *yawn* 

This shall be my new pen holder...

Pen / pencil holder *nod*

Neuro appointment today.   This is long, I'm sorry, I'm in limbo again.

I might not have MS, again!
Stopping Copaxone as of today as a bit of an experiment.
See here's the thing.   Lots of things, I guess, can cause lesions, eh?
Fact:  I DO HAVE SARCOID.  No doubt.  Lung biopsy proved that.
So when I started to go to UCLA they wondered why my Oregon docs had diagnosed me with MS when I have Sarcoid without even a spinal tap.  Then they did the spinal tap warning me even that probably wouldn't get me answers.  That in MY case, it's just a flip of the coin.  Only a brain biopsy could ever prove MS vs NeuroSarcoidosis.  Too identical.  Etc. 

But aha, my spinal tap and my MRI are just TOO typical of MS, it IS MS... Bingo, I have both.

Not so fast it seems.  That was the generic Neurology clinic.

Today I was seen by the MS Specific Neurology clinic at UCLA.

As always see the intern first.  Nice as all of their docs seem to be.  She goes to talk to the big boss who comes in.  And guess what.   He's just not convinced they can say I DEFINITELY have MS or Sarcoid or whatever.  Yup I have symptoms typical for MS.  Yup I have a lot of lesions.  Everyone agrees with that.  But I also have Sarcoid.  I have never had identifiable exacerbations just symptoms.  I'm anything but typical MS beyond symptoms and the "Dawson's Fingers" pattern on my MRI. 

Basically I have a lot of yup it could be MS and a lot  of hmm this is off, it's not typical MS presentation stuff going for me too.  So technically I have a MS diagnosis still standing and a "I'm sorry we may never know" going for me too. 

Soooo, as of today, I'm off of my Copaxone.  He left it up to me.  We're basically experimenting here.  They'd like to see what happens if we do a new MRI in a few months after I've been off of Copxone (for those who are all wait what's the Copaxone again, that's the daily injectable meds I take).  w00t!  No more stabbing myself with a needle for awhile.  In May they'll do a new MRI to compare it with the last.  I can all but guarantee it won't have changed.  The last was, I think last January?  Or was it January of 07?  I forget.   But they don't feel they need a new baseline one as nothing significant has changed since then.   I was without Copaxone for a time in Santa Maria when I wasn't seeing doctors and my Portland MRIs vs theirs showed no change.  So I suspect this will be the same.

Every doctor who sees my MRIs admits it's a lot of lesions.  The first MS clinic I saw up in Portland -- that neuro said he felt he wouldn't be surprised if it was 15 years worth except about 10 years prior to that visit I'd been in a car accident  where I'd hit my head and had a CT done.  You'd think if there'd been say FIVE years worth of scarring then that'd have been obvious, though CTs aren't as clear as MRIs I guess.

Brian was sighing, the doctor said I wonder what he's thinking, I said he's thinking we've been through this a lot before.  On the way home Brian said he didn't really offer any alternatives --  because the doctor just said he's not sure I have MS.  But then Brian said he's kind of happy he didn't offer alternatives and added he wondered if I didn't somehow injure my brain at some point and not know it.  I think he meant just somehow like bam a one time brain injury, or infection, or whatever.  But that makes no sense to have what they all explain as so much damage -- symptoms that just appear after my gall bladder surgery / that infection wasn't in my brain.. 

I dunno.  We may never know I guess.  Cutting my skull open to cut into my brain isn't really an option.   So off the meds to test this way it is.  We'll see what shows up on MRIs if I'm off of the meds that slow down MS progression. 

I decided I'm just gonna make up my own friggin name for my illness.  Brian named it including my last name.  I asked him why the hell Dan's last name gets to be included.  I know it's my last name now.  That's only because he left so suddenly I was in no position to deal with changing everything then.   Then I got sick and was in no position to change my name while dealing with my health.  Etc.  Now it's just kind of well what they hell I've been lazy, it involves going to court, etc.  But hey, no Dan doesn't get to have his name on MY disease.  Brian explained what better thing to use an ex's name on but a horrible disease.  LOL.  Indeed.  But I think for now, I'll just keep saying I have Brain Aliens, Pain Aliens, etc. 

So I call the pharmacy as they had called and left me a message saying it was time to refill my Copaxone a few days ago.  I ask them before I refill this I had gotten the letter about the vouchers and it had said it was no longer 100% so can he tell me how much I'll owe before I arrange this shipment.  He tells me no, with the voucher they do covers the medicine and I have to pay the $15 shipping but my Copaxone prescription has expired so they're waiting for UCLA still (last time this took awhile so I may be without shots awhile).  Ok now I am confused. 

Ok, maybe I was MS'y and stupid when I read the letter.  I just re-read the letter, it says:  "You are to receive 75% of your current daily dosage, divided into 4 (four) shipping periods. *Please note, if your award is less than 100%, you will need to purchase the remaining amount of your medication needs from the pharmacy of your choice".  Now this isn't like normal meds / pills.  It's daily shots, expensive ones.  They come in a box.  You can't have your doctor order an odd dose, it only comes in boxes of 30.  Filling 1/4 of the RX at another pharmacy is... just... odd.... and probably impossible.

So I originally read the letter like well we have to pay for 25% of the shots.  Now I am thinking erm they will send only 75% of the shots.  Which is weird weird.  I can't walk into a pharmacy and get 25% of a box of these.  But I don't really care to be honest as if that is what this means it solves it in another way.  I'll just keep doing my shots for now (well someday when they get a new RX from UCLA, seems I'll get a break til then -- getting ahold of UCLA clinics if you're a patient or a pharmacy is a BITCH), and next time I do see the clinic ask them what they would do:   try to get the rest filled somehow, stop taking it for a few months between award years (I was off it for years before), etc?
 

I got my tattoo today, picture when I figure out how to get it from Brian as I don't know how to get a picture of the back of my shoulder and it's taped up at the moment anyway.  The guy who did it was nice.   And the guy who I assume either owns or manages the store knows people Brian knows, small world.

So, I got approved for Copaxone but ugh... Don't know what to do, I need to call the mail order pharmacy I have to get it from.  I was approved for 75% of the cost this time.  Brian said not to panic he thinks we can make that work.  But I'm not sure I want to bother taking it anymore.  I should.   And I should be appreciative that they'll pay 75% of my super expensive MS medicine... but I'm just not sure.  I'm 99% sure that means Brian will have to pay $500 a month.  And we'd like to move in the next few months.  A.  I'm not sure we can afford to move if we're suddenly paying about $700+ a month for meds instead of $200 a month (and that will soon go up since my Topamax dose went up too).  And B.  I'm not sure I want to have Brian pay that much every month when it could be used for other things... All for a it may or may not do anything for me drug.  Yeah, no new MS lesions while on it.  But my symptoms aren't better either and I also wasn't on it for years and didn't have new lesions then either.  So is it worth $500 a month or not?  I'm not even SURE it's $500 it could be more or less, I need to call.  But I think that's about that price, it was last I checked and it varies online so it's hard to be sure.... ugh ugh ugh.  But they also don't send it to me in one month shipments so the first shipment would be in about one month and would be for 3 months worth of meds and they expect payment as immediately (though they actually basically give you until they ship again).  hrmph.

SAG calls for strike vote.  If you don't feel like reading that story and don't remember what the writer strike did to my city last year, allow me to sum this up for you with one paragraph from that story:

Another major Hollywood strike so soon after last year's Writers Guild of America work stoppage would be devastating to the economy in Los Angeles, where one in 10 jobs is said to be in the creative sector. As it is, Bloomberg News just reported that foreclosures in L.A. have tripled, and a strike would not only affect those who directly work in the entertainment industry, but those who make a living off of the biz peripherally, like interior designers and architects, for example.

Brian wasn't affected by the writer strike because ______ had a completed script and was well in progress, though friends of his lost their jobs due to being on movies that still needed script writers.... _____ is filming now and could potentially affect him, if actors strike. 

This is why I get so pissy when the McCain camp has bashed Obama as just some Rock Star, Hollywood, Famous... blah blah blah... whatever.  I've said it before they always say California, Hollywood, San Francisco, etc as though they're the foulest words on earth.  They add elite and liberal to them with such disdain that it makes me want to vomit.  They make it sound like THAT state, well that state would never vote for me anyway and THOSE people there they ain't like YOU, you're real Americans, THOSE liberals out there I'd never want to go see them anyway.   Well got news for you MY FRIEND, not only have we been hit as hard or harder by this crisis, we could soon be hit again by a strike that will make it WORSE.    So take your California Hollywood Elite Liberalism hating and shove it, because we're screwed buddy.  And you ignoring it and us and treating us like lepers as you have makes me resent you.  Yup, I'm so freaking elite -- With my BF who has worked at times LITERALLY 7 days a week for weeks on end, sometimes 18 hours a day, with NO benefits.  Yup.  And now even though he's not in a union, he could be losing work for who knows how long.  Our city could lose millions.  In a state that already can't pay its bills, in a state losing jobs and homes like crazy.

We're just those stupid rich elite.  Screw you.  Just because you can't win this state is no reason to treat us as you have.  You could have ignored us.  But I watch your speeches in... I dunno Iowa, or Ohio, or whatever good down home American state you are in when you laugh about how horrible it is that Obama would dare go to California where the rich people are when you'd rather be with factory workers who really represent what America is about... I have one of them modern day tv thingies.  So as my state falls apart and could get worse if this strike goes through, I remember things you've said this election.  I remember that while I'm supposed to believe you're just like me, you've talked as though you hate me. 

Ugh.  Do not like this.  Brian is torn... a strike could give him a short break and though he's not union, one way or another he would almost certainly be affected, he has enough saved up to cover a few month of rent/bills just in case this happens.  They could keep his department working on art stuff even without actors filming... or... ???  We have no clue. Neither of us likes what it does to the city as a whole though.    EEEk!

He's been considering looking into buying a house as prices probably won't get cheaper thanks to all of the foreclosures and the hit our market took.  But now, not a good time to look with strike looming.  We thought about health insurance too but realized quickly even with his income no way can we afford it for me with my pre-existing conditions (and no John McCain's idea of a $2,500 tax break wouldn't even touch the cost of insuring me).  Filled out my Copaxone app, it now has in big bold letters you might not get it even if you did before as it depends on their funding etc, never used to have that warning.  I'll stop taking it if denied, we can't pay $36k a year for one med. App gets mailed Tuesday as we have no working printer at home so Brian's gonna print my bank statement at work tomorrow.

MS:
Shots just arrived so going to go try to sleep soon.  Three months worth of needles in fridge.  Was last voucher.  They said a new app should apply within six weeks. Same attitude I have every year when time to apply - nice if I get approved and if not I just stop taking Copaxone and hope for best on the MS front because we can't pay a few k a month for one medicine.  Pretty sure it'll be approved.

Body and brain can't decide if they want true MS flare up or not.  Was zoning out a lot the last few days.  That is starting to really fade now, only happening now and then.  But body... it's more confused than brain.  Tingle or burning tingles or stumbling into stuff a bit here and there.  Then hey feeling much bette... err or not much worse... no all bett... nope... crap wors... all bet... nope... grrr stupid MS sucks so bad this tingling is crap and I... all better agai.. nope... etc.   Look brain aliens of mine, just hit me and stay consistent and then fade.  Back and forth is worse then even weeks of bad.  Weeks of  bad = adapt.  On and off and on and off = no adapting from minute to minute, hour to hour.

Reading:
Decided to wait on Jefferson book til not zoning out and focus is more there.  So reading err read Batman: Hush, Vol. 1 and Batman: Hush, Vol. 2.  Look, don't judge me... it's umm art and stories both *nods*  Ok fine comics.  Good thing I branched out from Superman... not too far... still mostly Superman only but Batman counts!  He's Superman's best friend *nods*  Anyway, good story and art what more could I ask for?  Hush is highly recommended *nods*  Brian once told me he, not I was supposed to be excited about comics... said the same about Wall-e, that I was supposed to be excited about it and he was supposed to be excited about the Dark Knight... I live with a sexist pig, where is the lipstick? :P 

Online while MS'y:
I'm ranting.  Pain makes me rant when I shouldn't type.  So skimming stuff, reading, randomly commenting and replying.  So mom knows I'm alive and sort of ok just frustrated.  If you see me posting and semi commenting but missing stuff, deal with it :P  Not gonna let myself do the guilty feelings if I don't reply to everything as I usually do heh.  But am trying to semi be here.

Hair:
Decided to dye it again, fades so fast while not bleaching.  Noticed had an old red that was almost melting in container so figured use it before orange.  This brand isn't my normal and fades faster than normal too.  So figured will only last few weeks then the orange.  Forgot how messy it is compared to normal brand.  Eeeek.  But hair is pretty bright red.  So is my neck, ears, sink, etc.  Normal brand isn't messy.

Sleep:
Needed, now, lots. zzzzzzzzzz.

"They" and they being all of the political experts are saying that Hillary will concede to Obama tonight...

Still not doing great but better than yesterday which was such a big woah that I passed out between the time Brian went to shower and the time he got out to leave for work.  Woke up not feeling great but not feeling like the brain aliens had mutated into something new either.

How do map sites like Google give estimates for travel time in "traffic"?  You know, the 10 minutes... up to 30 in traffic... Really?  Is there some complex secret formula for that?  Because I'm pretty sure traffic travel times can't be guessed especially in cities like LA.

Needle clipper arrived, my Copaxone needles fit, w00t!  Now just need to double check to be sure I can legally throw the rest away... pretty sure I can as no blood is in it, and all of the medicine is out of it.  Without a needle attached I'm pretty sure it's no longer biohazard material in Cali.

ouchie... can't type more.  zzz time...

*edit* clinton camp says she's won't.... she should... hrmph...
zzzzz

And you take the bad...

Bad = cat puking all over your blanket at almost 11 at night when the washer here is broken so rinsing it out in say the tub and letting it dry in the nice cali sun isn't possible.  Spot cleaned it best we could.  Just, eww.

Also Jury Duty summons for the middle of July, hello... Nope.  My MS has had my sleep "schedule" and pain and etc messed up for years.  I liked jury duty last time I did it but don't think I can handle it now.  So I called to postpone it long enough to get my new neuro to fill out the form getting me out of it, hopefully.  If not at least it's postpones until Winter and not the heat of summer when it's all even worse symptom wise.

Shot didn't go so well tonight, not truly bad, but one of the rare times when autoject is blech.  I do NOT want to use the needle alone and usually autoject is fast.  There are rare days like say twice a year when I must pick a spot it doesn't like and it seems to take 20 minutes for the shot to complete.  I said seems... it's really like a minute... but it feel like forever when trying to hold the autoject there waiting and it hurts.

Brain aliens, mostly pain alien have been active over a month now and don't seem to want to go away.  They start to then BAM hit me ten times hard, get better, BAM... it sucks.  But I'm managing to get some art ideas down and working on some, somehow. 

Overall more bad than good... but trying to get some good in today, yay art.

Ferris Wheel:
If you've seen movies with a pier/boardwalk in it which has a ferris wheel, you've likely seen Santa Monica Pier.  The old ferris wheel (I believe last seen in Iron Man) has been replaced and the grand opening was tonight.  LEDs, computer run light show on it at night, still solar powered.  Sooo pretty now.  You can see it here.  Of course looking at it on the webcam is probably only cool when it's night here.

More on sharps:
I've been reading up.  California law changes in September, but until then so long as I throw my needles away in a plastic or metal container with a secured (duct taped lid) and clearly mark it as sharps and not to be recycled I can place it in the garbage so long as it's a garbage bin and not a recycling one! BINGO!  My apartment doesn't have a recycling bin only garbage.  Soooo Ha!  Once this needle snipper arrives the sharps container is going in the garbage, after being duct taped up really well.  And if the needle snipper doesn't work (it says it's for 28g-31g needles and copaxone is 27) then I'm talking Brian into spending the big bucks on the Needle disintegrator.