Internet sabbatical

Just a quick note.
I'm feeling dreadful the past few days and so have decided to take an internet break today (yes, I just woke up and got out of bed, that's what delayed sleep phase disorder plus chronic pain does to you).  I hear the Tutankhamun DNA results were leaked earlier today and while I find the preliminary data fascinating, I'm also not really in any condition to say much about other than "wow, cool.  Wait, what?"
So, planning on curling up with a book and fighting off headache and sore throat with rousing fantasy fiction.
Hopefully I can get my hands on a copy of the JAMA article when it's actually published later this week.  I am most interested to see the results as presented there rather than 2nd and 3rd hand through the press.

On another note, so far as I know, I was totally right about Tut not being a chick.  :P

And now I'm pissed

My prescription coverage (which we have to do via mail for long-term meds) refuses to fill the new prescription for Plaquenil in either the name brand or generic because:

this drug is NOT COVERED by your benefit plan OR may NOT BE THE APPROPRIATE REGIMEN as defined by your plan

Of course, they don't bother to tell me this until about 20 minutes ago, when it's too late to talk to an actual human at either my insurance office, the drug coverage office, or my doctor.  Sweet.  Asshats.
I left a message for my rheumatologist, though at the time I thought they just wouldn't fill it because she hadn't marked "may fill with generic" or something.
Hopefully we will get this sorted out after the new year.

I was really wanting to try this med in the hopes it would help with the fatigue and pain and other autoimmune issues. I had, in the very back of my mind even dared to hope that maybe it will let me get some independence back and make it possible for me to expand the pool of potential jobs.
Now, because we've commoditized health care, some paper-pushing bureaucrat with little or no medical training got to decide what medicine I should take without consulting me or my doctor.
I'll add, too, that this is not a new drug or a designer drug, nor even an outrageously expensive drug (though with our current financial situation it is something that will be a stretch on our budget.)  Anyway, I'm going to check and see if the maker of the name-brand stuff has a discounted/free meds program too, just in case my rheumatologist yelling at them doesn't help matters.

The next person who tells me that there is nothing wrong with the healthcare system in this country better be way the hell out of reach of my cane and/or my knitting needles.

I was already in a funk this week.  This is not helping.

ETA:   I guess I'm glad I only blew a little of my Xmas money on books and knitting needles - I can save the rest for sweet, delicious malaria meds that might fix my autoimmune brokenness if it turns out whoever makes Plaquenil doesn't have a "holy freakin' crap I'm not a millionaire but would like it if I could have a decent quality of life and maybe work for a living" program.

I should be doing stuff

Still recuperating from a very busy week and so spent most of the day reading in bed again.  I don't know if it's the weather or tiredness or what but my pain levels are back up too, especially in my hands, which makes working on the Xmas stuff not really happen so much.  And my right hand has been going numb just from holding a paperback book, so I think I'll give it a bit more rest.

Anyway, we did go and get our Xmas tree last night from Home Depot.  I rode around on one of the courtesy scooter thingies because spasms plus pain plus tired plus giant-ass store does not make for a good mix.  This one was nice enough but very slow.  Very reminiscent of the Seinfeld episode when George winds up in the low-speed chase on the scooters.
Our tree is very nice - a Douglas fir this year - and it smells wonderful.  And we found wintergreen plants for sale and scored one.  I was very excited - there's a part in Farmer Boy  about collecting wintergreen berries and leaves to eat and use for flavorings, so extra nerd coolness.  They should do well in our window - the need indirect light which is perfect.

Hard at Work

I've spent most of the day working on Xmas gifts.  I've been carving stamps to use on polymer clay to make pendants and such.  I have a sinking suspicion that most of our Xmas stuff is going to be a bit late this year.  Things are taking a bit longer than I had anticipated, plus I didn't adequately allow for sick-time in my long-range planning.
Anyway, I think I'm done for the day - I have one set of pendants stamped.  Still need to be baked and finished.  But my arms hurt and my hands hurt and my head hurts.  So, done.  So there.  Nah.

I have a busy week ahead too.  Therapy tomorrow.  Dinner Wednesday.  Rheumatology and cog testing follow-up on Thursday.  Dinner on Thursday.  I already want a nap just thinking about it.

Holy crap, it's freezing

My mom left yesterday, sadly for her not in time to miss the excruciating cold (11 degrees F, with windchill it felt like -16).  I was very glad she came to visit and I think seeing me go through the basic neurology exam may have helped her understand things a bit.  She still tends to attribute a lot of my discomfort to "sitting around too much" but I can cope with that.  I wish it *was* because I sit around too much, unfortunately, regular attempts to be more active have demonstrated exactly what my limits are and what activities trigger major levels of pain.  So, I keep as active as I can up to the point where the pain and fatigue becomes too much.
Anyway, a very dear friend took us to the airport and then took me to do a bit of shopping yesterday.  I got supplies for Tom's Xmas present.  I also finally acquired some casual pants that fit properly - since last year when I gained weight I have had only two pairs of pants that aren't part of a suit that are big enough and both pair were jeans.  So, I have some corduroy pants now to, hopefully, keep me warm and stretch my wardrobe a bit.  Yay!  Also, I am definitely done in for trying on clothes for at least a month.

I've had a very couple of weeks and am thus sore and very tired.  Even though it's warmer today, the apartment feels very cold so I haven't felt up to doing much besides huddling on the couch with Oreo and the heating pad.  I'm hoping it will warm up later so I can work with polymer clay.  I have Xmas presents to make.

I'm trying not to worry too much about the somatoform thing.  We are trying to keep an open mind but Tom and I still don't think that it's a sufficient explanation for my symptoms.  There will be more discussion about this next week and I guess we'll see where that takes us.

In which I do even less than usual

Well, last night was exciting.  Somebody broke into the house Tom has been house-sitting.   Fortunately, there was very little damage and there doesn't seem to be anything missing and no one was hurt, though, based on the size of the window they broke to get in, I think the perpetrators were midgets.  So, that's okay.

Last night I discovered my gauge swatch was not making gauge for my knitting project, so I went up a needle size, which seems to be working, but is putting me even further behind as I haven't even finished the stupid gauge swatch yet, let alone started working on the actual project.  :P

Today I spent most of the day in bed feeling generally unwilling to face the world (well, the living room) and randomly surfing the internet.  I also have a sucktastic headache.  Stupid drugs.

Also, my heels have started to go all slightly numb and very tingly if there's pressure on them for very long, which is weird, but not terribly unexpected.  The rest of my feet and my hands are frequently slightly numb or tingly.  Today, though, my kneecaps started doing that after I got out of bed to help with dinner.  Not really an issue with walking but it felt very, very weird.  The weird sensations are called paresthesia, but I hate using the term because I think it sounds funny when I say it.  It's sort of like when your arm or foot "falls asleep" but the sensations can be really painful or peculiar for some people and can sometimes be a constant thing.   In my case, they're frequent, usually just mildly annoying and either related to my Hashimoto's thyroiditis, to some other as yet undiagnosed by suspected autoimmune problem, or part of the package deal with the neurological junk (which itself may be autoimmune related).   Anyway though, new word - if any of you are young enough to be taking the SAT I suppose I'm helping you study.

However, there was Tom and Oreo cuddling today.  And silly phone calls from the grocery store about "Baconnaise."  And Doctor Who and more knitting on the stupid gauge swatch.

Thanksgiving hang-over

So, the turkey Tom wound up making (because I slept all day) was fantabulous.  So was everything that went with it.
Oreo got his little share of turkey and mashed potatoes and cranberry jelly.  No gravy for him this year because it had garlic and shallots.  I wasn't sure about the stuffing so none of that either.  He seemed very pleased nonetheless.

I'm trying to reset my sleep schedule again.  Despite getting up at 9:30 AM on Wednesday, I couldn't sleep for more than an hour or two without being wide awake again until 5 AM Thursday.  Sigh.  If this doesn't settle by Tuesday, I may have to reschedule cognitive testing yet again, as I'm pretty sure the results will be skewed a bit if I'm about to pass out or throw up from sleep deprivation.  "Regular" tired = fine for testing.  Sleep deprivation = not so fine.  Trying really hard to stave off that "dementia" diagnosis as long as possible.  Or at least until we have several more small dogs and I acquire a wardrobe of muumuus so I can be the crazy dog lady.

After dinner last night we watched The Ghost and Mrs. Muir, which is one of my favorites and I played with polymer clay.  Tonight I think there may be some Doctor Who watching and knitting on my baby nephew's Xmas present.

My dislike of the acetazolamide is increasing.  I've mostly gotten used to the excessive peeing and the resultant need to consume large quantities of water.  Unfortunately, the headaches that come within a few hours are not so fun and don't seem to be going away as my body gets used to the med.  Neither is the intestinal disturbance.  And I don't think it's helping much on the involuntary movement front - at least not enough to make it worth it as far as I'm concerned.  Definitely not helping enough for me to up the dose to twice daily.
On top of that, I can't take my preferred headache/significant joint pain remedy, Excedrin (or the generic equivalent) because it has asprin (a salicylate) in it, which is contraindicated.
I also can't take Pepto for my stomach because it has salicylate because ALL salicylates are contraindicated.    This blows goats.  I'm trying acetaminophen (Tylenol) at the moment because ibuprofen will irritate my stomach and intestines even more.  It's working a bit better than it used to, but not nearly as well as it would mixed with caffeine and asprin.  Dammit.
So, my head hurts, I have to pee a lot, and poot a lot, and poop a lot, and the rest of me hurts too, BUT I have polymer clay, yarn, movies, and books, plus Tom and Oreo to keep me company, so I guess I'll survive and even be fairly happy.  Grumbly, but happy.

Sleepy

I managed to get up at 9:30 this morning, which is a nice step toward getting back on a non-vampire schedule.  I'm also exhausted, though, and my arms and legs are achy and weak.  Fun times.
I took Oreo for a short walk today, which was nice.
Besides that I've mostly been peeing (thanks, acetazolamide) and trying to keep myself awake.  Truly, I'm living the dream.
:P

Absence

Sorry I've been AWOL the past week or so.  I've been down with some sort of stomach bug that is still bothering me.  I'm still working on being able to eat solid food and I have pretty much no appetite to speak of.  Tom kindly mixed up some oral rehydration drink for me last night and that seems to be helping.  I've managed soup and yogurt and crackers and last night had some baba ghanoush and pita, but today am back to having to force myself to eat anything.  I'm also light-headed and tired (though having trouble sleeping) and a bit feverish.  In general, I feel like ass, which I guess is a good way to remind me that while I might not feel wonderful most of the time, I can definitely feel waaaay worse.  Bleh.
This week's goals are:
- keeping food down/in
- making it to the appointment I have Tuesday afternoon
- making it to the rest of my pulmonary exam which I think is on Thursday and hopefully not getting sick during it
- finishing a crochet project
- keeping up with the housework
- starting my new med that may (hopefully) help with the involuntary movements

Monday's Great Medical Adventure

So.  Monday.  I had a pulmonary function test.  And a neurology appointment with the new doctor.
Had trouble sleeping Sunday night and couldn't manage to sleep in Monday morning so I felt like crap.  Then my stomach decided to get in on the act and I spent most of the morning running back and forth to the bathroom and trying every method I know to get my stomach to quit being queasy.  Seriously.  Sipped water.  Took some Pepto.  Ate a ginger chew.  Ate something else, just in case it was because I was really hungry but didn't realize it.  Took more Pepto.  More water.  Finally gave in and went for the big gun - a single diphenhydramine (Benadryl) since it works as an anti-emetic in addition to its various other properties and is closely related to the active ingredient in a lot of motion-sickness meds.

Perhaps not surprisingly, mid-way through the pulmonary testing I barfed.  It was awesome.  Courtesy of the PeptoBismal tablets I'd taken and the anti-nausea liquid (essentially a syrup) I had also taken it was bright freakin' pink.  I made it to the trashcan in the room, thank goodness.  I still shudder to think how awful it would have been if I'd ralphed all over the mouthpiece.  I also managed to nail the edges of my pants, my shoes and my hair.
Yeah.
Anyway, I had, up to the point I projectile vomited Barbie's Malibu Dream Corvette paint, felt increasingly like I was having a panic attack.  Shaky, broke out in a sweat, got really dizzy, thought I might pass out, etc.    I'm guessing a combination of fatigue, existing stomach ick, anxiety about the upcoming neurology appointment (gee, why on earth would I be anxious about neurologists?) and hyperventilating on command is what did it.  Fortunately Tom was there to help clean me up and make me feel better and not make too much fun of me for barfing on my shoes.
I get to finish it next week (the pulmonary test, hopefully not the barfing).  Yay.

So.  On to the new neurologist.  She's awesome.  She talked to us.  Like we were human and have mostly functional brains.  She believed me when I told her about my symptoms.  There was no uncomfortable cross-examination.  There was no "well, but you're not doing that now" as though that somehow means that I never do that.  She paid attention when we talked.  She asked sensible questions and explained what she was doing. She noted that I've had to quit school and can't work or drive.  She immediately went and got a colleague to consult with regarding my symptoms and to have a look at me.  I didn't have to prompt her.   It was amazing.  So much of the stress of being sick has been caught up in that my previous neurologists (aka the Douchetastic Duo) behaved as though they either thought I was lying or that what I was saying just didn't matter.

I don't know if people realize how insidiously devastating it can be to have the people who are supposed to be helping you seem (and I say seem because, to be as fair as possible, I don't know for certain that the Douchetastic Duo didn't believe me, though that certainly seemed to be the case early on and I think it colored every later appointment) to doubt you, especially if you already have an unfortunate past history of being treated as though you were "malingering" or simply weak.  You start to doubt everything.  You doubt if your symptoms are really real, if you are as sick as you think you are.  You wonder if you're just lazy or cowardly.  You wonder if it's all in your head.  You treat every appointment as a battle to be geared up for.  You look at your symptoms and try to track them and document them as best as possible, to martial evidence, to anticipate questions and doubts so that you can answer them and then second guess yourself and worry that if you seem too prepared, too knowledgeable then that will itself give them more evidence that you're simply a "hypochondriac" or  "a hysterical woman" or  simply"crazy." And after you repeat to yourself over and over that this is real, this is how things are, then you have to deal with the doubt and the fear that the doctors you are supposed to trust, the people who are supposed to be taking care of you aren't to be trusted.   Aren't really looking for answers.  Don't really care.  And then you have to worry that eventually everyone around you will decide "oh, the experts didn't find anything.  You can't really be sick, then.  Suck it up and get on with life."  It's awful.  It's one of the most horrible things in the world.

But, things are looking up, I think.  I have a lot of hope invested in this new doctor, that she will be someone we can work with, who will be of help and some comfort.  Things are still unclear and frightening and uncertain.  But I think that at least more of that insidious doubt will leave me and make it easier to cope with daily life.

We are running some more tests and we will see her again next month.

In the meantime, I seem to be in another cycle of intestinal distress along with a return of genuine insomnia as opposed to simple (hah!) delayed sleep phase disorder.  Joy.  This may mean some upcoming appointments get rescheduled because, strangely, I'm not at my best when I've only had a few hours of sleep and constantly feel as though one or both ends is going to explode.

Despite all of that, though, I remain immensely grateful to have Tom with me to help bear all this nonsense.  And our friends to help us.  And Oreo to be, well, Oreo.

Sigh

Already rejected by the place to which I sent the CV yesterday.  Probably shouldn't be surprised, I've been rejected every time I apply to that particular institution (uh, think Arizona and the particular college rhymes with "ataxia" which I though particularly appropriate for me) regardless of what I do to my CV.  Meh.

Sleep schedule is now messed up courtesy of a migraine last night (I typically can't sleep through them, but am exhausted afterward).

And my arms hurt just from the effort of pulling on a pair of lounge pants after a shower.  Awesome.

Anyway, if anyone has any leads on online teaching gigs in anthropology, archaeology, history, or general humanities, let me know.  I have a ton of search agents set up and manage to submit at least one application a week, but it's not doing me a hell of a lot of good.  Part of that is timing, except for some of the primarily on-line colleges, most places only hire around quarter or semester beginnings, so right now is bound to be a dry spell.  I strongly suspect that my degree in "Near Eastern Art and Archaeology' is mildly confusing to some people as it isn't a simple "History" or "Anthropology" and it's also possible that being a U of C grad is also somewhat off-putting as they may expect me to demand premium pay.  And I only have one prior "official" teaching position (even if it was as an instructor at Tulane) and no official TA jobs to list because TA positions were very difficult to come by for my particular generation of U of C grad students due to the weird way funding and fellowships and assistantships were/are set up.

Maybe I should figure out a way to discreetly describe the times I covered for professors who were too absent minded, lazy, or hung-over to show up for class...

Cool?

So, I got a call today rescheduling my cognitive testing for next week.  I guess that means more time to, uh, study?
I figure at some point I'll start having nightmares that I'm retaking my grad school comprehensive exams.  And they're all in hieratic instead of just part of one.

Also, I feel like ass and am staying in bed today at least until my general itchiness wins out and I'm forced to shower, or my laptop battery runs out and I fail to retrieve the powercord.

I also managed to swallow an enormous amount of air from my CPAP.  The results have not been pleasant.

I sent out another CV for an online teaching position today. Everybody do whatever superstitious luck-making thing you do for me.  Maybe for once they won't run screaming from a degree in "Near Eastern Art and Archaeology."  (Dude, it works for history, it works for anthro/archaeology, it works for general humanities.  Just give me a job!!!!)

Also, tweeting for hugs is remarkably and wonderfully successful.  That is definitely cool.

Wow, something actually worked

I got called today to set up my cognitive testing appointment.  I'm shocked.  Pleased, but shocked.  It's scheduled for just a few days before my next neuro appointment and I'm hoping they'll be able to get the results ready in time.
Interestingly, the testing lasts all day 9-4 with an hour break for lunch.  I guess that should at least give a good indication of how fatigue affects me.  I'm very curious to see how this all works and, so far as I know, I don't have to do much in the way of stupid, awkward physical maneuvers nor are there any needles involved, so I'm kind of looking forward to it.
Something about being so tired Monday or my CPAP gurgling or something has thrown my sleep schedule off again, so I had no sleep last night despite several attempts.  I'm trying to stay awake as long as possible today in the hopes of resetting my stupid busted internal clock.  Incidentally, "as long as possible" means until I literally can no longer stay awake or until I start to feel seriously queasy, whichever comes first.  I spent most of Tuesday and much of today practically vibrating between the random involuntary movements, the tremors, and general quivering in most of my major muscle groups.  That was fun. :P

Backlog

Last week I was feeling particularly craptastic and didn't feel like looking at my Google Reader feed.  Holy crap do I have a huge backlog.  Even after I decided to just not even look at a few of my subscriptions, I still can't get it to say less than 1000.  Bleh.  Anyway, I'm working through it and hopefully will find a few cool things to share here on the blog.
I woke up at 5 again this morning, again because my CPAP hose had built up condensation.  I've ordered a tube cosy thing which is supposed to help.  I really hope it gets here soon.  I napped most of the afternoon without the CPAP and was reminded why that's a stupid thing to do.  I usually wake up with a splitting headache, stuffy nose, and I sweat like crazy if I sleep without it.  And any pain I have is usually worse because I didn't get adequate sleep in certain stages, usually REM when my brain starts going "holy crap, she's suffocating, wake her up!!!  Okay, it's cool, no, wait, crap!  Wake her up again!!!!"  Seriously, people, sleep is really important.  Don't skimp on it.

Progress?

So, today's neurology appointment was rather anticlimactic.  They were running behind (as usual) and I saw the senior attending doctor first.  As per usual he asked, as he has numerous times during EVERY FREAKIN' VISIT if there is anyone else in my family with similar symptoms.  And I answered as I have EVERY TIME "no."
If I ever see him again and he asks again I'm going to invent a sadly departed Great Aunt Matilda who had the exact same symptoms as me.  And when they ask me how she died I'm going to tell them:  "She strangled her neurologists with her IV tube.  Unfortunately, that also cut off her life-saving medicine, but she died with a smile on her face."
Anyway, I said I wanted to see one of their colleagues, preferable someone who specializes in movement disorders.  Shockingly, I did not get the "but why!?!?!" response but instead got an "oh, okay, that's fine."  (Insert image of me doing an Oreo head-tilt here)

At some point there was also a question as to why there weren't cognitive test results and I explained that despite my nagging about it via multiple emails, the examining doctor hadn't gotten around to arranging the appointment.  So they're supposed to be setting that up.  Again.  We'll see.

Then we discussed my freezing episode from a few weeks ago.  Apparently, "I was standing up trying to walk and my legs refused to work for 1-2 minutes" was insufficient description.  So, Tom kindly stood up and demonstrated my shorter freezing episodes.  I had no idea that I wave my forearms around like a spastic T-Rex when this happens.  I am also no longer laboring under the misperception that I am at all graceful.

Then doctor #1 wandered off.  For like an hour.  We finally caught him in the hallway to ask if we were supposed to have left.  Apparently no, the examining doctor still needed to, you know, examine me.  So he finally wandered in.  And totally blew my mind by saying, that, yeah, we should see the movement disorder doctor because they hadn't been able to figure anything out and that really wasn't good.  Then he asked if I was really sure I couldn't go back to school.  And I, as calmly as possible, said:
"Well, no.  There is absolutely no way, physically, I could at all manage to participate in or run a dig.  Not happening.  Nor, really, am I up to researching and writing a dissertation right now.  I can't focus for long periods of time and I have trouble pulling things together.  I think that I might be able to manage pulling together lectures for a course, but I really don't think I'm up to original research.  And there is no way I can hold down a job outside the house right now."
So, he said that that just wasn't okay and wasn't acceptable.  And I said I wasn't exactly thrilled about it either, but that's the way things are and I've come to accept it.
Anyway, he's going to consult with the movement disorder doctor to bring her up to date and we'll see what happens from there.

The thing is, the junior doctor (the second one) is a very nice guy.  He just seems sort of clueless and lost.  And his supervisor (the attending/first guy) is kind of a jerk.  He's patronizing, he avoids or outright refuses to answer questions, and he really seems to have no empathy.  Hopefully, I won't have to deal with either of them extensively again and the new doctor will be an improvement.  And maybe we'll make some progress toward figuring out what the problem is.

At this point, my expectations and desires are not exactly sky high.  I'm sure some people will regard this as overly pessimistic or negative, but they can, quite frankly, suck my metaphorical balls, as they haven't lived my life or dealt with this crap like I have.  The truth is I don’t think it likely I’ll regain my health entirely. If they can get me back to a point where I have the energy work as an adjunct part time or hold some other sort of part-time job, especially if they can get me back to a point being comfortable driving  or with enough energy to manage public transit in Chicago 2-3 days a week, I will be overjoyed (and slightly surprised). Hell, even if I can get the energy to get a successful Etsy shop up and running I'd be happy. Or, failing that, I need to know if I can or should apply for disability, preferably with at least a chance that they won't laugh themselves sick before denying me at every appeal.  Life is expensive.  Mostly, I just want to know what’s wrong and see if we can stop it or slow it down. I want to know if I can have kids or adopt or if I need to start getting my affairs in order (whatever the hell that means) or if I’m likely to be a crotchety old woman with a wheelchair with a shotgun rack on it. That’s what I want.  (Also, I'd like a pony, but I don't think neurology can really help me with that)

Today was also a reminder of how real this is.  I was awake at 5 AM because my damn CPAP was gurgling because condensation had built up in the tube.  I got up at 5:30.  I showered and ate and got dressed and left the apartment a little after 10 to walk barely half a block to catch the bus to the hospital.  I went to my first appointment.  I walked to lunch across campus - maybe 3 blocks.  Walked back for my neurology appointment.  Walked 2 blocks back across campus to camp out in Tom's office waiting for him to get off work so we could ride the bus home together.  Walked a block or so to catch the bus and then the half block home.  By 1 PM I was in an annoying amount of pain and more than ready for a nap, by 3 I was actively complaining, by 5 I was squirming and now I'm ready to take an extra dose of ibuprofen and rub myself down with as much BenGay as I can stand.  My vision is blurry.  My hands are slightly numb, my toes tingle.  My ass hurts (seriously, and I already applied BenGay there). My shoulders hurt, my upper arms hurt.  For some damn reason my armpits hurt! I feel like I have about five tightly kinked knots in each thigh.  And, of course, as usual I walk like a drunken sailor with two termite infested peg-legs.  And walking takes effort now.  It's not a simple, mindless thing anymore - I have to think about it, plan my route, make sure my legs are doing what they're supposed to be doing.  It's taken an effort to write this and I have the sinking sensation tomorrow is going to be an especially bad day for brain fog.  I'm missing or forgetting more words than usual and started stammering a bit starting about mid-afternoon.  The only reason I haven't gone to bed already is that I know at the moment I'm in too much pain to fall asleep easily and that the first few minutes of lying down while my back unkinks or whatever the hell it does is going to be excruciating.
I can manage that once or twice a week every 6 weeks.  I would be a quivering mass of sobbing menthol-scented jelly after 2 or 3 days in a row, let alone 5, all the time.
The thing is though, much as it sucks, and I'll be damned if I'll pretend that it doesn't suck, I'm not that unhappy.  I have a husband who loves me and takes care of me and does chicken dances for neurologists and rubs BenGay on my butt and friends who laugh at my good humored (really, it is intended to be good humored) bitching, and a little dog who comes and cuddles on my lap and dances for joy when I can get up and play with him.  And I have books and yarn (not enough, though, there's never enough yarn) and fabric to play with when I can.  But I would like to not have to wonder and worry quite so much anymore.

Meh

I slept through most of yesterday.  Today I'm still really tired, my throat is sore, and I hurt.  Liberal use of ginger-honey-lemon tea and ibuprofen has done nothing.   This blows.  My hands are bothering me enough that I'm hesitant to knit or crochet, plus my brain is foggy enough that I'm not sure I want to start anything.  Humph.

Also, I'm giving serious consideration to getting a Snuggie.  I'm also considering an electric blanket for use on the couch.

On top of that, I'm having trouble settling down to read anything, which is equally annoying.  Double humph.

On that note, I think I'll be taking myself and a selection of books off to the bed.

Shopping and Pain

So, Friday I went out shopping with some friends on a quest for jeans for one of them.  Fairly uneventful except that I got motion sick in the car, which hasn't happened to me in several months.  Joy.  At least I didn't barf.

Saturday, Tom and I decided to check out a Goodwill store just to see what we could find.  This would have been more enjoyable if I hadn't suddenly started having double-over, OMG-WTF-there's-an-incubus-in-my-abdomen cramps.  I toughed it out.  Didn't find much besides a fairly decent haul of sci-fi/fantasy paperbacks and a cardigan for Tom.  No luck in the velour sweatsuits (I like the nicer ones with the hoody and pants because they're comfy but I feel comfortable venturing forth in public in them) or in corduroy jumpers or dresses that aren't disgustingly cutesy or matronly.

Saturday evening the worst migraine I've had in a very long time hit.  I suspect the motion sickness on Friday was part of the "aura." prodrome.  Anyway, it started off like one of my typical migraines that I get every 10 days or so - sucktastic, but I can take some Excedrine, find a quiet spot and read or sleep and deal.  Then it decided to get extra evil on me.  Yeah...I thought someone was driving an ice-pick through my skull.  My eyes kept slipping out of focus.  I started sweating.  And I started getting nauseous.  Anyway, I managed to get to sleep.  And woke up Sunday with the migraine still there.  And the nausea was worse.  And I was having hot and cold flashes and sweating.  And feeling rather...giddy.

I finally got rid of it (mostly) very late Sunday night, possibly early Monday morning.  I hate these.  The pain sucks, but that isn't what bothers me the most.  It's the nausea and hot/cold flashes and skin being over sensitive and giddiness or lightheadedness or anxiety or whatever the hell it is that I really, really hate.  It makes me feel slightly panicky and slightly like I'm not quite in control.  It's dreadful.  It isn't precisely a panic attack, but it is sort of similar, though it lasts a while.  And it puts me in mind of some of my worst moments mentally and emotionally, which probably doesn't help matters.  Anyway, talking about it/through it seems to help, thus this post.  Having Oreo decide to shove my laptop off my lap and occupy it himself also helps, as I discovered last night.

Anyway, I'm still feeling a bit fragile - the migraine hangover, I call it.    Hopefully another day of rest will help.

In which very little happens

Not much going on lately.  I had an pretty disconcerting episode of freezing while standing the other night. I had been in the dining room looking at my bookshelves for something to read and I just froze. For a few minutes I literally could not get my legs to move, but I was still standing.  I thought I might be stuck there for a while, but everything started working again, so not a huge deal.  This is good, as Tom was asleep, so who knows how long it would have been before my pitiful cries for help woke him up.  ;P  Just another symptom to report to my neurologists, who will undoubtedly look puzzled and disbelieving because they work hard at living up to their nickname:  "The Douchetastic Duo."
Ahem.
I figured out the costume and hair for the amigurumi and she is nearly done.  Her polymer clay accessories are cooling after being baked and she should be ready for delivery tomorrow.  Once everything started making sense, it went pretty well.  I'll post pictures after she's been delivered.
I slept most of today and am still tired.  My various plans for getting things done are mostly being postponed daily because I'm too tired, too twitchy, or have other things to do.  Sigh.  Not giving up, though.  Dammit.
I am pleased, though, that Netflix now has Mystery Science Theater 3000 on instant play.

On the schedule for the rest of the week:

• Get some stamps put together and used
• Start on my next knitting project (fingerless gloves of some variety)
• Make some napkins
• Work on the crochet hook case I started sewing months ago.
• Work on the crocheted bag I started crocheting months and months ago.  It's getting close to finished.
• Think more about holiday gifts - who is getting them, what they're going to be, when I need to start them, etc.  Last year we made chocolate bark for people and Xmas cookies for doggies and I'm thinking of doing the very same thing this year because it was easy, tasty, and everyone seemed to like it.  I'm also inclined to crochet or knit things, but that's time consuming and unpredictable.  :P
• Work on a crocheting project for Tom.  (IS A SECRET.  CANNOT SAY MORE.)

Oh, and I have a doctor's appointment Friday.  Endocrinology.  Boring.

Wobbly

Something has triggered a return of pretty major tremors and twitches for me the past few days.  It's made doing things that require precision with my fingers...interesting.  I've been especially foggy lately too.  It's sort of hard to describe to people who haven't ever experienced it.  It's sort of like everything is slightly out of focus - things that you actually look at, but your mental processes as well.  For me, this means I spend a lot of time staring at walls or other things without actually seeing them while my brain has checked out, or require several repetitions from people in order to understand what they're saying or even register that they're speaking to me (Tom gets to experience that one the most - I'm sure he's thrilled).  And I forget where I was going with a sentence in the middle of it or can't remember words, often simple words, as I'm typing or speaking.
My pain levels have increased too.  And I've started getting very random sharp pinching pains that last only a few seconds at a time in very random places.  Like my earlobe.  WTF?  My earlobe?  What is that about?
So, the movement stuff and the brain fog means nearly everything has been on hiatus the past few days and will probably continue to be until I snap out of this or adapt to it, whichever comes first.

Banned Book Week

I thought I'd pick up a meme from blogger Samurai Knitter - pick from a list of banned books and discuss in honor of Banned Book Week.

I've always thought banning books had exactly the opposite effect the pearl-clutching ninnies had in mind - what is more likely to get a kid to read a novel than finding out that Mrs. Smith from down the street thinks it's smut?  Lord knows I read Lolita on my own in high school precisely because it was supposedly so "bad."
It seems a lot of the books on the list had complaints registered primarily because people were missing the point.  In particular, complaints about the use of racial epithets.  Because, as we all know, reading such a word will immediately and permanently damage the reader either by causing them lasting emotional damage or by turning them into a bigot.  And if we pretend that people never used such terms in the past and don't use them now it will totally make everything okay.
It seems like To Kill a Mockingbird gets the most flack.  I have to assume that most of the people complaining have not actually read the novel and thus have no idea what the context of usage is.  Otherwise, I think I need to pause and weep for humanity.

The complaint about 1984 has to be my personal favorite though:

Challenged in the Jackson County, FL (1981) because Orwell's novel is "pro-communist and contained explicit sexual matter." Source: 2007 Banned Books Resource Guide by Robert P. Doyle.

Do you hear that whistling sound?  That would be the point flying just over the top of your very pointed head.

For more information about Banned Books Week (or more reading that will allow you to both mock people and feel deeply uncertain about your fellow man) see the ALA site here.