83 posts tagged “ms”

So MS is in the news thanks to swine flu and our friends in Florida.  Seems voting is not the only thing they have wrong.  Health care too.  They're singling out MS in regards to how to ration health care if a swine flu  pandemic hits.  *blinks*  Idiots. 

Apparently they're preparing for their hospitals being too full and they want to know who they should deny treatments to.  #1 on their list is apparently incurable cancer and #2 appears to be end stage Multiple Sclerosis.  It's all over the news.  Do they not educate people in Florida?  Not even their doctors?  Death by MS is so rare.  In fact we don't really DIE FROM MS so much as...   okay -- it's an auto-immune disease.  The brain and spine control every organ, in MS they get scarred up and so everything goes wonky.  We can have all sorts of issues.  If we get infections or whatever it can be harder to fight.  Our bodies often fight things that they should not fight and then hey when it comes time to fight what they should, well, it can be a bitch.   

I'd never even heard the term end stage Multiple Sclerosis before today.  BTW - people learn to enunciate.  It sounds like half of them are saying IN stage and the first story that I saw, it wasn't clear what they were talking about so I was like "What in the hell is IN stage MS?"  When they finally got to the talk of people who are dying of cancer, etc I went "Oooh, END stage, duh."  MS is a horrible disease, it sucks.  It makes my life a bitch.  It's nothing like what people dying of cancer go through though, I'm sure.  So few people die of it.  Not enough to turn it into a national story about how there's enough of us dying that hey if there's a pandemic yeah between cancer patients and people dying of MS -- if we leave them out of the ERs we'll have room.  Such bullshit. Now if they said something like we have a lot of MS patients who come to our ERs for IV treatments and during the swine flu season we would like their neurologists to keep them out -- THAT I could buy.

Yes MS is a horrific disease and yes right now I get so dizzy I can't stand for long, I whine, I feel like hell, I get tired, I cannot walk for long, etc etc.  BUT, I'm not dying.  I probably won't die of it.  To even hint that "end stage Multiple Sclerosis" is some sort of a major issue, big enough that if you have a pandemic it's #2 behind cancer in how to free up hospital beds... ?? Grrrrrrrrrrrrrrr.  Yes, a few will die from complications related to having MS but MS is NOTHING like cancer.  There's really NO such thing as terminal MS.  If something happens and you get sick, having a screwed up immune system from something like MS and a brain and spine scarred to hell and back - yes, that might speed up your death.  MS is NOT really terminal itself anymore.  Maybe in the way way past.  Florida -- get your heads out of your asses and educate yourselves.  I could probably name a dozen illnesses myself where the patients would be at bigger risk being in the hospital during a swine flu pandemic and/or who would bring you more patients taking up more beds than terminal MS patients. 

My holiday weekend is being wasted thanks to my stupid body. I was in too much pain to go to B&N, CVS, and grocery shopping - so we'll do that tomorrow.  I'm feeling a little better now though.  I love how stuff comes and goes just like that and I never know when to expect it.

I did realize something though, I had a few Provigil pills left.  They helped me a little before but not enough to bother taking them regularly.  Well since being on the Rebif the MS exhaustion is just out of friggin control so I thought what the hell I'll give it a try again.  Now when they prescribed it to me they had to get permission from the head guy.  They treat it like a street drug.  They said it'd probably make me feel like I'm on speed.  I've never done speed, but I'm guessing it didn't make me feel like that.  But with the exhaustion as bad as it is, I definitely felt it helped this time.  So I might ask to be put back on it, I stopped it on my own, by just not asking them to refill it -- or really just not taking it even.  But yeah, I think it's time I try it again.

Me:
First, I'm in one of those infamous phases where I suck at the internet.  I'm sure we'll all remember my last MRI wasn't good, showing new damage and active disease.  So I'm not sure if it's the brain aliens kicking my ass or if it's just my body still adjusting to the rebif but I'm getting tired very easily lately -- to the point that I get distracted easily, dizzy or lightheaded very easily.  So I've been around skimming etc but I suck at commenting and stuff.  If anyone feels I'm neglecting them online, sorry.  I'm here, kinda, just slow.  In skim mode.  I've become more fond of reading Twitter since it's good during short attention span mode, not much spam, and mom posts her most important stuff.  But I do skim these other sites, just yeah... slacking at commenting.  But here anyway.

Now it's been a busy news day it seems.

MJ:
MJ's death ruled a homicide.    I've got really strong opinions on his doctors on this one but I won't rant for now other that to say see, everyone will put a price on your health care and if what they did wasn't actually illegal it should have been.

Torture:
That report on torture... Where's Cheney?  He's usually over my tv the second these things come out.  He or his daughter anyway.  They should be telling me what a brilliant program this was by now.  I'd like to hear how they're gonna defend this program now.  Threatening to RAPE mothers.  Threatening to KILL suspect's children.  Firing up power tools at their heads and threatening them with guns.  Great fucking program.  These people are trained to make them believe their threats and they did this stuff.  Rape your mother?  Kill your kids?  Set up death scenes then it's your turn.  Nice.  And that's the stuff they didn't black out for being the stuff too bad to be seen in the public version of the report.  I really can't wait to hear the Cheney camp tell me how important it is to America -- that we have to threaten to RAPE women...  and KILL children... Assholes.

Politics:
McCain and others and now bringing up the fact that Ted Kennedy isn't in the health care negotiations and it'd be different if he was.  I'm sorry, I find that kind of cruel.  Ted Kennedy has been fighting for health care issues um, I dunno how long, probably since before I was born to be honest.   I don't think he asked for a brain tumor.  He just missed his sister's funeral.  And yet I suspect if this comes up for vote and he's at all able he'd be there for the vote.  And now you're basically laying the mess of the negotiations on his feet.  Well Mr. Maverick -- why don't YOU fix the negotiations?  You're not on your death bed, as sad as it is it seems Ted Kennedy is nearly there, and you said it's what you did so well, crossing party lines to work with everyone.  Did you do anything with / for Ted Kennedy's Plan before he got this ill?  hmm. 

Politics:
On Twitter recently, I said this: "I'm starting to think that Howard Dean is the only true Public Democrat left."  I'd like to correct myself.  Anthony Weiner of NY is pretty damn liberal... I'd call him a true public Democrat. He's so liberal he's willing to go on tv and say he won't vote for health care reform without a public option, but not just that he pretty much says Dems and Repubs aren't thinking of reform the right way.   He says insurance companies offer nothing and we should have Medicare for ALL.  And I believe he means it.  It's not often you see a politician standing up there saying something that you know is gonna piss off everyone on all sides and they mean it and aren't just either saying what people want to hear OR saying something just to stir things up.  So, go him, while I don't think our country is ready for true universal care, public option while leaving and encouraging the private system to stay in place is the way to go, I still got a kick out of watching him stand up and explain how pathetic the insurance companies are anyway.

Crafty:
A bit too weak, sick, whatever to do anything productive so I just umm... online windowshopped  for crafty ideas, I guess?  Yeah debating about if I want the next purse I make to me same as the last or not... Anyway... I found this BRILLIANT idea for those of us who have people who say they want "Nothing" for a gift and it's easy to make too!

Also for you other crafty types, free patterns.  I've no interest in anything but purses right now... but I may need to consider the kitty pillow someday at the bottom of this page.

Health:
Still not great.  But better than I was this weekend.  Hopefully it's just me being a bit sick and was a bad week for shots last week.  It usually takes quite awhile to adjust to some meds so I'm not freaking out yet.  And these are some heavy duty expect flu like symptoms, etc kinds.  And double the doses I'd been on.  Higher than Avonex which I couldn't tolerate and I'm doing better than I did with it.  Still... I dunno yet if I'll be able to take it.  Haven't given up on it yet... still kinda sucks.  Those lower doses of it really tricked me into thinking it'd be easy on me.  Doubling up to the final high dose -- this has been a DAMN WTF?  as far as my body has been concerned.

I thought I understood the Rebif starter pack, guess not.
I thought it meant the first two weeks were to prep you for the meds and the next two weeks were the full dose.
Silly me.

This is the last week of the starter pack.
I call to order the meds as after Friday, I'll be out. She tells me they'll send out three months worth of meds, YaY.  That's what I was used to with Copaxone.  Easier than calling every month.  She mentions it's the 44mcg dose.  It'll be here Friday -- I asked for Friday instead of tomorrow as I need to give the PO two days to redeliver another package I missed yesterday and figured I'd have everything delivered on the same day. 

So anyway, I get off the phone and I'm thinking 44mcg, that sounds wrong.  Sure enough I look at the dose in the fridge. 22 mcg.  I knew it was too good to be true.  I'm quite tired on the current dose and feel a little off and erm not full on sick but just dizzy and yeah... off.  I've been slowly adjusting to it but when the side effects sort of mimic your illness it takes some time.  Now the next dose doubles the current one.  Soooo expect me to be typo'ing, using the wrong words, etc more the usual starting next week!  heh I do that a lot but I TRY to quadruple check stuff so I won't look like an idiot tooooo often.  Not sure that I'll be able to catch my goofs as well for the first week or two of this new dose while my body first gets hits with that.

Excuse this post.  As we all know by now I'm one of those fun people who cares a bit about health care because she'll always have health care issues for life and right now that means I'm still adjusting to the new shots.  I feel rather shitty though I must admit I'm adjusting better than I though I would, still I do feel like hell today as last night was full dose #2.  I'm just tired and a bit dizzy and erm... off a little.

And yet, I do have a rant about the public option.  Actually, no.  I have a rant about the idiots who keep talking about the public option. Something like 80 percent of my fellow Americans have insurance, good for you.  I hope you don't get sick and find it's basically useless or that you'll lose it if you're so sick you have to quit the job you have it through, etc.   I don't care to rant about that, you should all know about that by now.  I don't even care what you do or don't think of the public option. .No, what I do care about is that people who claim to be intelligent and think that the rest of us are too freaking stupid to know what the word OPTION means.  In case YOU are too stupid to know what it means, try something like dictionary.com.  Personally, I was fond of this definition: "The power or freedom to choose."

Got that?  Okie dokie then.  Stop saying that the Public OPTION will take away everyone's private health insurance and FORCE them into the government plan.  Stop insulting my intelligence.  You're talking about total Universal Coverage, which hasn't even been on the table in any of these plans, this is an OPTION.  Fucking assholes think Americans are so stupid and will believe what they say is a fact just because they say it.  One guy pretty much admitted well his concern was just that if there a Public OPTION it would possibly cause the insurance companies in his district to lose business.  Oh, so wait, how does that work?  If the government is soooooo bad and can't be trusted to run health care, who would possibly dump their private insurance for it?  AHA! Guess that OPTION isn't as bad as you made it out to be then?  Thanks for telling us that.

Then again,  apparently some Americans are as stupid as they think we are,  because a lot of people seem to really believe that Republicans DO want to reform health care  -- without a public option, without the protections for pre-existing conditions, etc etc.  Okie dokie.  Really?  Umm what would you be reforming if you remove every aspect of the reforms?  Hell they've pretty much flat out been saying they aren't going to release a plan of their own.  They do NOT want to reform anything and they've been saying we have the best health care in the world.  It's my option to claim they're on crack.

Ooh wait one more thing on the health care thing -- they keep saying that it'll cost a fortune because everyone gets every test they want, etc etc.  Really? Then in the next breathe they say that the government will KILL YOU because they'll stand between you and your doctor and you'll never get anything done.  Geezus make up your mind.  Will I be able to ask for anything and everything and get it whether I need it or not?  Or will I never get anything because Obama himself will be trying to kill me and will be sitting by the phone saying "Ramie needs what?  HELL NO".  I guarantee I know more about health care on a personal level than a lot of these idiot politicians talking about it.  You don't get tests for the hell of it.  Doctors don't order them for fun.  And Obama isn't gonna be sitting by the phone blocking them if they're needed.  Neither of those absurd claims is true.  The gov't doesn't want to block your care and most people don't try to get a tons of unnecessary tests. 

Now if you'll excuse me, I think I'll go sleep the day away as I feel uber dizzy and sick.  I think I might pass out.  I think last night's shot has really caught up with me now.  Holy hell.  You wanna know about health care?  I'll tell you one thing, don't friggin get MS.  That's all the health care advice I can give you as the treatments suck ass.  It's still better than I expected but it sucks none the less.  It's still 99% than Avonex was I don't seem to feel sick for a week after, just a half a day after, but now I'm doing the shots three times a week so it's still a lot of sick days.  I miss the Copaxone and the no side effects but I guess the more and more brain damage thing = I gotta do what I gotta do.  If this doesn't work... I'm kinda screwed.  I'll have been through just about all of the shots I think. 

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* 

I called today, Rebif will be here tomorrow.  It has an autoject too though they said they'll have me meet with a nurse.  Frankly I can't see me ever wanting to do a shot without an autoject.  All hail whoever created autojectors.  But this means that the time to feel like a junky is nearing.  Stabbing myself with needles regularly is back.  Not daily at least. 

I don't want to sound like a pessimist but I'm not hopeful because I'm a realist.  Except for a time when I couldn't get to doctors in Santa Maria and the PDX docs stopped refilling the RX for me I've been on shots since the MS diagnosis.  They all try to claim hey we work.  Clearly they don't for me.  The scars keep coming and the first doctor who diagnosed me looked started by how many I had upon seeing my first MRIs.  The others since all say I have a lot of lesions.  I feel like a human pin cushion and nothing more. 

This is to be my third shot.  They weren't even sure I had MS until they decided hey she needs to try Rebif.  Well they were then they weren't then they were then weren't.  I didn't even know they decided on MS again until they said Avonex and I refused it, having been on it before and not having tolerated it.  Now it's try this one and btw you may not tolerate it either. 

I wonder if its worth taking shots at all yet here I go again.  Not like I have a choice really.  My brain and spine will just keep on developing these things that look pretty on an MRI but do such ugly things.  Do nothing and they keep coming.  Take the shots and apparently they keep coming but try the shots and you never know they might slow down or not, but *shrug*   If this one doesn't work I'm pretty much out of shots aren't I?  Even if I'm not, I'm done with them.  No, I'm not a quitter ;)  Just saying shots for 6 years now, this will be the third one... I can't even remember if there's others, but if there is and if this one isn't the one, well I'm done after this if this doesn't seem to do anything.