82 posts tagged “brain aliens”

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. 

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.

My day started way too early, 7 I think.   We got to UCLA at 8. I just got home.  It's now oh about 2.

Not the most productive day, learned very little, but did learn a little I guess.

Apparently we are sticking with the MS diagnosis -- again.  Re-diagnosed then?  I can't keep track of what we'd call this really.  I really didn't get a chance to ask about that rash I was getting on my arms, etc.  Brian agreed, there's no way I could have.  Basically since I keep seeing a different doctor it goes like this: Hi, who are you, *looks at my chart*, wow lots here, start from the beginning, ok wait what were we doing, ok, I'll go talk to the head guy, ok, bye. 

Well...  Except head guy does come in -- the one who wasn't so sure about MS and had pulled me off of Copaxone.  He added that we'd pulled you off of Copaxone and did an MRI, which we were just looking at.  He left that statement at THAT.   Erm, ok wait what?  You were looking at my MRI... AND?  And the Copaxone wasn't working, have you tried Avonex?  Yes, I have, I've told you people that before, I couldn't tolerate it.   Ok well we're putting you on rebif then and you probably won't tolerate it either, but we'll try it since Copaxone isn't working judging by your MRIs as you have active disease.  Erm... wait... what?  Does that mean my MRIs show new lesions?   Yup.  Well thanks for telling me. 

It was the most frustrating experience.  I like the people at UCLA, they're all nice.  I've no doubt they're good doctors, the first ones I saw were really good and seemed to even research this stuff when not seeing me.  But this was just so so so frustrating.  No chance to talk, had to ask them if they were telling me I have new damage.  They didn't even ACTUALLY tell me they're keeping/re-diagnosing MS. 

They told me Topamax is why I have tingles when I had tingles as my first MS symptom and was put on anti-seizure meds to help reduce tingles in the first place.    They claim I was put on Topamax JUST for headaches, erm not really I was put on it before you guys.  Brian said he mentally filed that in the BS dept right then and there as it was being said. 

I really DO like UCLA.   They're just, I don't know so understaffed that they don't know you.  And I'm the most patient person around but even I was just sooo grumpy and whiny and grrrrrrrrrr by the time we got out of there.  Brian said he understood why they have a metal detector.  People who had been calm for hours were started to cause, erm, not actual scenes but were definitely not calm.

We're finally going to look into a private neuro.  I can't handle that anymore.  My head hurts.  I have new damage, in my brain or spine or both, I don't know?  They weren't gonna bother telling me there was new damage, I had to ask.  I guess they're going to try to get me on rebif now because apparently it's active MS, we assume, for now, again.  I wasn't off of Copaxone long enough for new damage to form so whatever, they say it is MS, Copaxone didn't work other that to perhaps somehow mask that it was active MS on former MRIs? of something like that, and now yet another shot to try.

Brian's frustrated, I am... They walked out and he was like wait, it IS MS?  It wasn't just me.  I was like hmm I didn't ask about that rash on my arm that pops up -- he said it wasn't me, they didn't let you.  So, yeah.  MS diagnosis, again, still?  who knows.... Active, new damage but where (spine, brain, both) is unknown.  New meds trying to be set up with a program like Copaxone since I don't have insurance.  If I'm not eligible for that?  Well I dunno I'll see... they said if I don't hear in a week call. 

Neuro appointment finally.
Tuesday.  I think I mentioned that we don't have the Vonage phone set up, so Brian just checks the voicemail online, then if we have any he forwards it to me in email.  Well there was one from the neuro clinic.  w00t.  Except Brian's e-mail said Tuesday at 2.  Huh?  So I listen to the voicemail to see wtf?  he's talking about.  It's a reminder that I have an appointment at the neuro clinic, ok, a reminder?  It'd be nice to have been notified in the first place, can it be called a reminder if they never notified you of the appointment at all?  He just misheard, it's not at 2.  It doesn't have a time in the message at all nor does it have a call back number.  But the way they work is they schedule everyone for the same time in the morning, EVERYONE.  Then it's first come first serve.    Then no matter how early you get there, you wait about 2-4 hours to be seen. 

Still, w00t!  I needed my RX filled, I would like to know what MRI said. If I need to be back on my daily shots or no since I have a fridge drawer full of them.  Etc. 

I really do think we need to consider a private neuro office though.  We'd pay about the same for an appointment.  Then we'd not wait for 2-4 hours to get in once there.  The only problem is when it's MRI or blood draw times.  That would be expensive.    But the waits at the clinic, the no notifying of us an appointment, and then a few days before it -- just before a weekend them being all ohh yeah by the way you have an appointment in 4 days and if that doesn't work for you well you can reschedule it for oh 6 months from now,   etc -- that's kind of rough on us.    I like them, once we get in to see them.  Just this is too much. 

Still, w00t w00t!  Finally, I thought they'd forgotten me.  Brian is pissed though.  If he had been scheduled for meetings Tuesday we would have to reschedule, or he'd be screwed at work.  4 days notice is not good.

And of course it's coming at a time when my health is just hell, though I'm not sure it's the brain aliens, I think I have a cold and having the brain aliens always amplifies a cold by a lot.

I've been getting a rash on my wrist and/or arms every few months or so, usually on weekends, a few hours after we get home after having been out for awhile.  I'm pretty picky about stuff I eat, bathe with, clean with, etc.  Since I got sick I'm really sensitive to everything.  For example on a bad day even the bleach or perfume aisles in stores give me migraines.  Just walking down them.  Sooo, on the days I get these rashes I start thinking "ok self, did you eat anything different, wear anything weird, drink anything weird, etc".  Nope.  Just get these welt like small rashes, usually on my wrist or arm and then they go away a few hours later or the next day.  Well I'm pretty sure that's not an MS thing.  Sarcoid can affect skin but it doesn't look like the Sarcoid stuff.  So I look up rashes. 

It's hard to find an exact picture of a rash just like mine and couldn't get a picture that really made it look like it looked before it went away. 

But what I did keep coming up was Lupus.  Um no, I don't have Lupus.  Then I read -- it mimics MS in MRIs and has rashes like this and has basically all of my MS/Sarcoid/Brain alien symptoms.  OH WTF?  Thank you internet.  Now I'm wondering if I have to question the doctors "Sooo, was anyone smart enough to test for Lupus?"   No one ever mentioned Lupus to me.  They mentioned just about everything else to me.  I know very little of Lupus, to be honest I basically thought it to be basically like Fibro / CFS but was something you could perhaps test for / most doctors took seriously unlike the doctors who originally thought I had migraines so bad that I had mini strokes and ohh everything else was Fibro aka you're a crazy woman so take some antidepressants and leave us alone.  I didn't know it could actually damage your brain in a way that mimics MS/Sarcoid on an MRI.

Now you know, I shouldn't have to question if doctors considered this, my current doctors are good.  But at the same time seeing it mimics MS and Sarcoid in MRIs?  And seeing the symptoms.  Well you never know.  And the current docs didn't do a CBC I think just a lesser blood test.  And who knows what blood tests those idiots in OR did, even though they did dozens of blood tests they probably didn't look at one of them, given how they treated my MRIs.  Yes, they did make me THIS paranoid about every little new symptom I get.  Having a year or two of bad docs, the wrong diagnosis, wrong meds, etc  in the beginning scarred me for life.   That one doctor who told me to keep taking meds that I couldn't breathe with,  for example.  Breathing probs aren't a side effect she said.... pharmacist said umm yes, they are, very rare but very serious one.  DUH.  She was by far my favoriet neuro.

I actually think Lupus is highly unlikely, but at this point knowing in my case they've already said we'll probably never KNOW what I have for SURE, I'm willing to ask if they've tested for everything that has a test when I get a new random symptom, but only if it seems logical and this seems more logical to ask about than some things my old doctors came up with ;)

I'm a couple of chapters into Watchmen  but my mailperson just delivered Dead and Gone (Sookie Stackhouse, Book 9).  Watchmen is on hold.  I won't be seen until I finish Dead and Gone ;)

I deserve it.  I woke up because I was in pain with burning tingles, not because I was ready to wake up.  I again passed out last night, out cold before I was ready to sleep.  And I found out what happens if you forget to put a filter in the cold brew coffee pot and let it sit all day then go to drain it... yeah... ugh.  One of those weeks already.  Brain alien / MS hell or something.  So I'm gonna get lost in Sookie / Eric / Sam /  Bill's world now.  Even if Bill is such a jerk *nods*

In a week or two I get season one of True Blood on dvd too, w00t.  Not sure how I'll live without HBO though, gonna have to wait a long ass time for season two to come out on DVD now, eeek.