New Hair for Me, New Shoes for Tom

I couldn't take it anymore and got my hair cut off again the way it was since, oh, I graduated from high school up until 2 years ago or so. Yay, less hair. Yah, more spikes. I really, really like it. It doesn't look quite as awesome as it did just after the cut since I was stupid and wandering around getting overheated, but, yay! Awesome! I think I'm just going to be one of those women who has short hair for most of her life - famous examples that come to mind are Julie Andrews and Judi Dench and, really, I could be in far, far worse company. (Also, I can I be M when I grow up?)  Hilariously, the stylist and her supervisor both commented "yeah, that looks more like it fits you" when the cut was done.

I rode the bus to the South Loop to the Paul Mitchell school (yay, cheap cut!) Unfortunately there was a bus back-up and I would up standing in the sun for about 30 or 40 minutes without sunscreen (because I'm stupid and didn't wear any and couldn't bear to keep my cardigan on), but I got there eventually. Then, like an idiot, I walked around after the cut. And very nearly passed out and/or threw up by the time I made it to a nice, air conditioned Best Buy with a nice quiet ladies room in which I rested for probably close to 30 minutes before walking a few more blocks to a shopping center so Tom could meet me with the car when he got finished with work.
One day out from therapy and I already failed this week's assignment: "DON'T OVER-DO IT!" Heh. Hopefully pointing at my head and repeating "but, pixie cuteness!!!!" will get us past that issue...

The plan was to go to REI with our member's 20% off coupon to get Tom some Vibram Five-Finger shoes that we looked at over the weekend. Alas, they were sold out of his size. Fortunately, my girly need to go to Ulta for hair gunk (and lord was that a long, confusing, aggravating process for me and my cheap ass) put us next to another shoe store that happened to have the very shoes he wanted which you can see on his adorable feet below.
To top it all off, we had a tasty, tasty dinner at the California Pizza Kitchen. I may need to sleep for the next two days, but I have awesome pixie punk hair and Tom has wicked cool toe-shoes (of which I am slightly jealous).

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Zafu Production

So, I finally got started on making my very own zafu (meditation cushion) tonight using these instructions.

All well and good except either I messed up or Michigan Buddhists are bad at math. I have my 59 inch strip of cloth. I made 3/4 inch pleates 3 inches apart from each other. I do not have 14 pleats. I have 11. For the time being, I'm inclined to say "so what" and keep on going, but I'm not working on it any more tonight anyway so if a reader who has better sewing or direction following skills than me can point out either how I'm stupid or how it doesn't really matter and everything is cool, that would be awesome.  Haven't ironed the pleats yet either, just in case I do need to re-do everything.

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Archaeology, Snark, and Boredom

Tom was foolish enough to show me this the other night.  I immediately started naming the pictographs because, dammit, that's what I do.  Screw the whole "Man, type 40" or whatever.  We all know about my issues with hieroglyphs and hieratic.
So, much snarking ensued.

Other than this, I've been doing a lot of reading and little else lately.  Pain levels are up sky high, brain fog is bad, and fatigue is too.  I have been doing my daily exercise though.  I'm hoping this flair will chill out soon.

Original photo by Cacophony at Wikimedia Commons


Frustration and Fortitude

Friday I had my first follow-up with my regular neurologist after having seen the fancy-pants guy at Rush and having gotten the Functional Movement Disorder diagnosis.
It was, um, interesting.
I'm not sure exactly what the note from Rush said, but it seemed from the way the conversation proceeded that my neuro is looking at FMD from the icky, old-fashioned "conversion disorder" perspective.  Joy.  Fortunately, she is willing to learn and wants to continue following up with me and isn't just telling me to get my crazy ass off to the psych department.

And, even more fortunately, my therapist specializes in neuropsych and is all over researching FMD and working with me and the rest of my docs on treatment options.  Hopefully after my therapist and neuro talk we'll get closer to the same page. 

I fell like I should clarify, before I go further, my issues with "Conversion Disorder" as a label. 
1.  There is still no adequate scientific model explaining how one develops conversion.  What there is seems to be mostly the old Freudian model with a few tweaks.
2.  Most of the information available and most of what regular MDs (as opposed to some/most psychiatrists and psychologists) are taught or have access to tends to be the older Freudian model.
3.  The Freudian model essentially boils down to "the patience has some subconscious problem or conflict that manifests as a physical symptom."  While that may seem fine on the surface, it still has a hell of a lot of baggage in the area of blaming the patient.
4.  A lot of the descriptions of Conversion tend to incorporate broader mental health problems as part of the definition.  And remember, before it was called "Conversion" it was called "hysteria."  Again, more baggage about relative "weakness" and "character."  Some of these descriptions are actually sort of offensive and not exactly "objective" either.  Again, this leads to further issues in the doctor-patient relationship.
5.  There is no distinction made between psychosocial and medical stress.
6.  There is no allowance made for patients who are basically psychologically healthy but experiencing functional (physical) symptoms.
7.  There is no acknowledgment of the recent research showing clear and evident changes visible in SPECT and PET scans of the brains of people suffering FMD (or Conversion) demonstrating that their nervous systems are doing *something* weird.

In a lot of ways, it all boils down to the old mind-body dichotomy problem that I cursed at Descartes for a few weeks ago.
Clearly, more research is needed, but I think the way MDs are taught and taught to think about "psychological" issues needs to change in a big way.

Anyway, back to the neurology appointment.  After we established that I am already on antidepressants and have been for several years and that they have had no noticeable effect on my FMD (sigh) aside from one point when we thought Zoloft may have been causing the damn movements as they started about a month after I started it, we moved on to "um, do you have a therapist you see regularly who you trust?"  Bear in mind, I've been telling neurologists for the past 2 years that I am being seen regularly by psych, but that seems to be easily forgotten.  I guess if I had to see people in only 15 minute spans every 6 weeks or more I wouldn't be able to remember jack shit either.
So, I gave her my therapist's number.  She wandered off to try to get in touch with her, but couldn't.  So, she came back.  We need to work closely with your therapist and maybe your psychiatrist (who I rarely see and then only for med reviews).  Yes, okay, good.  I'm all over this one.
Then I brought up physical therapy.  Yes, good.  Excellent.  Got that squared away.
And then I asked about disability. 

You'd think I asked her to drill a hole in my head.
"Oh, no!  That would be a terrible idea, I just couldn't support that.  The whole idea is to get you functional and back in your program and back to work!"
Blink.  I let the subject change while I took a few deep breaths and came back to it and said, basically:
"Look, I've been out of work for 2 years.  No one can tell me how long it will be before this treatment improves my functionality or even if it definitely will, but the best guesses seem to be in the range of at least 6 months and probably longer.  I don't want disability so I can sit on my ass at home and get paid.  But there are financial concerns here that are becoming increasingly problematic.  And disability isn't just about whatever pittance my tax payments over the years will get me - it will get me access to occupational retraining programs, back to work programs, home business assistance, and a lot of other things."
She still wasn't convinced and told me to ask my psychiatrist.  Sigh.  My therapist things applying for disability, especially since it's not permanent is a perfectly reasonable idea. 
Also, no one seems realize that my goal is NOT to get back to my grad program.  If that is the doctor's measure of success, she's going to be really damn disappointed.  I thought I'd made that clear, but apparently I didn't.  So, I guess I should start blathering at length about teaching/crafting/homesteading as goals during appointments.   "I need to be able to ride a horse and herd alpaca, can you get me to that point, doc?"

This is not the first time I've had this reaction to asking about disability (which I HATE asking about, I might add).  My primary care doc did the same thing (but was perfectly willing to fill out paperwork saying almost exactly the same thing so I could put my loans in forbearance).  I'm starting to think there's some memo going around that says "Oh noes!  Disability will turn your patients into feckless zombies!!!!  Unless they're on the actual verge of death, it will make them worse!  They'll never get well if they get Social Security!!!!"
So, yeah.  We'll see what happens with that one.

Yesterday, I found out that physical therapy has an enormous backlog and not enough therapists.  They can't see me until August 20.  I'm still deciding what to do about that.  I should call my insurance company and see if I can go elsewhere and still have it covered, but I'm sick (heh) of dealing with this crap and doubt I'll do much about it until next week at the earliest.  My alternative plan, which is only half-joking, is to buy the Wii Fit Plus package and do my own damn PT.

In the meantime, I am doing slowly gradated exercise which is supposed to be good for both FMD and Chronic Fatigue Syndrome and won't hurt my arthritis.  Walking for ten minutes every day even if I feel like total, utter ass.  I'm only supposed to do the ten minutes but this being me, of course I did more.  And I am suffering for it.  Never said I wasn't stubborn to the point of stupidity.  So, I clearly need to step back down to the actual ten minutes if I don't want to have to take as many NSAIDs and muscle relaxants (which I don't) or need to sleep for 14 hours.
The idea is to slowly build up stamina and retrain my brain into accepting certain motions and sensations as normal and okay.  This also means that I have to push past certain levels of discomfort either by just sucking it up or if necessary with meds.  But I have to be careful not to overdo it or I'll exhaust myself which sort of defeats the whole purpose. 
Early on, I am not enjoying this so much.  The walks themselves have been fine until the very end, when I start to feel sick to my stomach and dizzy.  Then within about an hour my whole back goes stiff and hurty.  And I've been wanting/needing to sleep 14 or more hours.  But this will make me functional, right?  :P


Amigurumi wheelchair

Amigurumi wheelchair
Originally uploaded by buelow
My crippled ass is loving this amigurumi wheelchair for this legless elephant.
I wonder if I could manage a full-size one? With a jet engine?


Headless Statue of Ancient Egyptian King‎ Unearthed : Discovery News

Headless Statue of Ancient Egyptian King‎ Unearthed : Discovery News
Probably just the angle, but I'm not so sure that's a king...

Also, there's some bloviating from Zahi and ongoing yammering about Cleopatra (the only one most people know/care about).

Mostly just wanted to mock the photo.


Actual Crafting Content!

Ha, suck it doubters!  I do finish a project every now and then.  It's almost never something for myself, but hey...
Anyway, I made a little fairy that resembles my niece for Xmas/Birthday/Your-Aunt-Fails-at-Time-Management Day.  Ahem.  We gave her a book as well.  I made an attempt at jewelry but need to figure out how to work with tiny little bits of wire when I have arthritis in my hands.  Heh.

I finally finished her while we were down visiting - her constituent parts had been made, but she needed putting together.  She's from the pattern/recipe by NeedleNoodles, who is also the author of the very awesome Creepy Cute Crochet.

Tom was kind enough to take some photos:

Those of you who are squeamish should avert your eyes for the next one, which made me do a spit-take:

I made a little scrubby bath toy to go with a bath book for our baby nephew.

And before we left I frantically raced to finish my crocheted tote bag and sew a lining into it.  It didn't turn out quite how I'd hoped, but it's somewhat functional.  No photo of it.

I cast on, frogged, and cast on again a beginner pattern for a lace washcloth about 10 times during the trip.  It think it's finally going well.

And I've cast on, frogged, and cast on again for a gift due soon-like that is making me ever so slightly grumpy and forcing me to admit that I should probably review a video of knitting in the round with circular needles because I'm clearly screwing up somewhere.


Road Trip!

Last week we headed down to Mississippi for the first time in about 2 years so we could visit Tom's family and so he could defend his thesis and get his MA in Applied Anthropology and I could go visit some old professors of ours at Mississippi State.  I wasn't sure how well I would handle an extended car ride (it's roughly 10 hours) but I managed reasonably well, especially since my neurologist prescribed some low dose clonazapam for me to try out for when my back is being particularly stupid.  Pretty much the only bad part was discovering that I get a migraine when I'm in our car for more than about an hour even if I'm not driving.  Not sure if it's our car or something else, but that's rampant speculation for another time.  Taking something doesn't seem to do much for prevention either, it just keeps it from getting totally unbearable.

I just realized it looks like Tom has his eyes closed.  That might explain a few things.

The position of the price tag on this bag of Chex mix suggests the ultimate results of consumption.

Oreo's head got in the way when my hand jerked, so here's the blurry photo of his head.

The giant cross of aluminum siding outside Effingham.  Because nothing says devout like building a huge aluminum cross in the middle of Illinois that will startle road-dazed drivers.

I pretty much forgot about the camera for most of the rest of the trip.  Tom did get some excellent photos of a few projects I finished though, so I'll post those in the next few days.

Tom successfully defended.  Yay!  He just has to do some final edits and formatting and that good stuff.  So, now we're even on the graduate degree front. 

Oreo is still recovering from the trip - I think he was terrified we were going to leave him with my in-laws because that's where he stayed the last time we were in Sudan for 2 months.  He was definitely freaking out when we starting packing up to come home all the way up the point we actually put him in the car.  Poor little dude.  He's an excellent little traveler, though.  And I like having a warm snuggly on my lap for the trip, at least until he squirms too much and steps on my internal organs. 

Oh, and Tom briefly transformed into a douchebag while we were in Mississippi. 
All he needs is a flask of Maker's Mark, business cards for his lawyer/politician/lobbyist/upper management dad, and a Confederate flag and he'd be all ready for Pledge Week at Ole Miss.
I deeply and sincerely hope to never, ever again see my husband with
  1. A popped collar
  2. Any item of Ole Miss memorabilia
  3. This facial expression