48 posts tagged “medications”

NaNoWriMo update: 6,067 words so far.  I didn't write today as I only slept about 2 1/2 hours total last night and today, while sitting up on the couch.  Not so comfy I must say.  Didn't think I could wake up on time for shot delivery.  But was soooo tired this morning.  Guess I just passed out.  Woke up about 5 minutes before the knock at the door at 11:30 but had been awake this morning when Brian got up for work.  Then I tried to sleep and couldn't -- so I'm still up.  But finally exhausted.  Writing will have to wait until tomorrow.  I've resigned myself to the fact that I'll have some catching up to do and this version will be complete crap and a basic outline, basically.  I'll have to totally redo it as there's no way I'm getting good stuff at this pace but I like my character concept.  I just don't like what I'm writing for them.

Since I knew I couldn't focus enough to write even crap, I spent part of the day reading one of the two books I'm reading now.  Yes, two.  I'd started Rosemary and Rue: An October Daye Novel before my other books got here.  I'm on page 150 of it.  But A Touch of Dead (Sookie Stackhouse: The Complete Stories) started calling to me once my new books arrived, since it's the Sookie short stories that I've missed as they've only appeared in anthologies before now -- I'm halfway done and only started today (It's only a few stories).

Now I think I'll sleep, a lot. But hey, I read a little and have shots for three more months. I just haven't slept in, erm, I can't remember now.   Can't see straight.  zzzzz

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.

Today I: 
- Cut out some stuff to sew, didn't actually get to the sewing beyond a zipper. 
- Picked up my anti-seizure meds, $200something worth of fun there.
- Got coffee.
- Decided to save grocery shopping for tomorrow as am not feeling well and had already over done it having had been awake since 9 am and having gone out twice by the time we finished up with getting meds and coffee.
- Bought and watched Synecdoche New York.  It's a Charlie Kaufman movie, aka the guy who brought us Being John Malkovich, Eternal Sunshine Of The Spotless Mind , etc.  This one was even weirder and deeper.  Brian decided it was too deep for him.  I think his head hurts.  It was good though long, weird, and not as good as his other movies. 
- Now I'm considering sleep as it's been a long day and I still am not feeling 100%

Tomorrow is grocery shopping and work on sewing this bag, because you know I might as well jump right into a real project.

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.

Home:
Got a lot done.  House looks a mess though because there are tons of empty tubs laying around and 4-5 tubs of stuff to give away to charity (was gonna do that this weekend, but have so much to do already that we're saving that for the weekend after).  This apartment will soon look like an actual apartment.   Only taking what 4, 5, 6 months?  With Brian's schedule and my Brain aliens, it takes awhile.   Still when we moved in we predicted that we'd be done about the time they tore these apartments down, so we're way ahead of schedule as that's what a year+ away still.

Meds:
Last night was shot #2 of Rebif.  I do feel a bit off shortly after taking it but nothing like when I was on Avonex.  This is of course a fraction of the regular dose so it's hard to tell if this is how I'll react to the full dose or not but so far it's tolerable.  Mostly I just feel a bit blech, then tired,  but it fades by the next day.  Fingers crossed that it stays this way including during week three when the dose goes up.

Family:
Talked to mom, Karina, and Keegan tonight.  From mom and Karina I got the usual love, etc.  From Keegan?  I found out that he was shooting Grandma with a toy gun.  So I tell him that's not very nice.  He informed me that it's okay it's just a toy.  I asked him what he'd do when Grandma took the gun from him and started shooting him instead, would that be nice?  He said she couldn't get it from him.  Oohhh really.  I told him that both Grandma and his mom were bigger and stronger than him and either of them could get that gun from him if they wanted to.  He informs me sure, if they gang up on him.  So I asked him was he gonna tell him that to their faces?  He said "Oh, I think they can hear me".  LOL.  When I talked to them?  His mom found it to be a challenge and grandma informed me she'd already taken that gun from him several times today.  HA!  Silly little boy talking big.   He was also upset he isn't allowed to jump off a certain stair of the pool until he's ten, I told him only a couple of years.  He told me yeah "1 year and 24 months"  Aww, cute, but his math is a little off.  And then I told him not to feel bad since he's probably almost the height of ten year olds and he told me "Yeah I'm closing in on that range".  He's adorable but I'm glad I missed seeing his idea of how to wear pajama bottoms, I hear it wasn't attractive.

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.

More doctor trouble:
Went to fill my RX.  Now after spending X hours at UCLA Tuesday it didn't occur to me that I should double check my RX before leaving there.  Apparently I should have, the doctor FAILS at math.  3 pills a day, one month supply, that's how many pills?  I mean I'm no math expert but apparently 3 x 30 is now 60.    They had to go by the quantity even though it says three a day.  Sooo I had a choice -- fill it as is at 60 or wait til they get through to get it fixed.  No thanks, I'm OUT, last time I gave them a week's warning they STILL haven't gotten a call back and that was a month ago.  So I filled it and we're going to hope that next time it'd due they can get through to get it fixed to the correct 90 pill quantity.  Brian "Yes, it's time for a new private doctor".

Books:
While they were filling that we went to the B&N in the same shopping center.  I got two new books.   One was one that Windy recommended yesterday: Dead Witch Walking (The Hollows, Book 1).  The other being The Secret Circle: The Initiation and The Captive Part I -- since I  liked her Vampire Diaries series even if the most recent one was a big WTF?  compared to the rest. 

 Yes, I bought two books each from a different series.  Now usually I buy from the same series because in the fairly recent past I've always found that if I buy just one book well hell I want the next book ASAP.  Until last week, sticking with that theme,  I bought two books from the House of Night series.  I know some of you like YA books as much as I do lately.  Let me save you from a headache -- skip that series!  Unless you want to have your patience tried, in which case it's fine.  Shame too, the story has such potential.  I just can't get past the stuff like every single time the gay character is in a scene -- oh hey he's gay, did I mention he's gay, oh he shouldn't be checking out that straight guy because that guy is straight and he's gay, he gave us advice wow it was logical and gay for him to do that, etc.  Everyone and everything is treated like that..  There's a black character too, so you can imagine.  Every time I really started to feel the story was worth something there was more of THAT.  

I've never wanted to stop a series mid-series.  And never has a series made me afraid to buy two books from a series at one time before.  House of Night caused me to do both.  Oh well assuming both of these are good, I can read from two series at once I guess.

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.