Ten-Toed Couch Sloth

The Topamax experiment continues. The last dosage increase is tomorrow. Still having migraines, but I'm supposed to give it six weeks.

I really, really hope the sleepies go away. This is ridiculous. If I stop moving I fall asleep. I curled up on the couch to read this evening, Oreo came to snuggle up and be a book rest and tummy warmer. Next thing I knew it was 8:30, Tom was napping in bed, Oreo was crying for dinner and my hand was asleep.

Topamax also causes vivid dreams. I've been dreaming about managing underfunded National Park or National Forest visitor centers with my former graduate advisor. The one who went kind of crazy. Yeah. He's nice in the dreams at least.

Anyway, this makes it difficult to work on things that involve reading because I get drowsy so quickly. Grumble. I have academic library access again, but if I pass out every time I try to read that might get to be a bit useless.

Better news: Tom found my Flowbee!!!  I cut my hair today. I like cutting it myself. I think it turns out pretty awesome. Yay!

Whoa have I been slacking off

Topiramate (Photo credit: Wikipedia)

Between teaching (which sucks a lot of prep time as I do a lot of slides) and having a cold or a flare or both I have not been blogging with anything like normal regularity.

Latest news: I am teaching in the summer and probably next fall. Sweet! Both are things I've never taught before, but, um, yeah.

I finally got in to see a neurologist here. He was wearing a black t-shirt and a pin-striped suit, which made me do confused head-tilt, but he seems competent and is probably not a mobster, so we're cool. I am trying Topamax to prevent migraines.
I'm a little nervous - the side-effects do not sound fun, but willing to try it out. Everyone cross your fingers I don't turn into a suicidal zombie, which seems to be the most scary possibility.
I have enough trouble with brain fog as it is...

Ummm, what else?

I had to drive far-ish (for me) for the neurology appointment yesterday. I discovered (re-discovered?) that driving makes me question the size of other drivers' penises when they do stupid things. Or are in sports cars. Or it's Tuesday.

Oreo and I have been sitting on the patio for a while every day. He likes soaking up the sun and having a leisurely sniff-survey. I have to be  really careful to avoid sun rash/burn between my autoimmune disease and the meds to treat it (because making photosensitive people MORE photosensitive is AWESOME!!!), but I do like sitting out or at least having the door open for a lot of the day.

My birthday is coming up and I'm hoping to get the hat linked below and some sun gloves and sleeves so I can be outside more during the day.
Sundancer UV Protective Hat

Blurgh and some crocheting

As I said last time, the past few weeks have been rough. I'm not sure if I've been in a CFS flare, if my thyroid meds need to be adjusted, or what, but most the past month I've been dizzy to the point of greying out for no apparent reason, almost throwing up if I bent over, and exhausted - if I read a book as opposed to a bright, active computer screen I start to doze off, no matter how much sleep I've had or how recently I had been asleep.

Not as much has gotten done around the apartment as some might expect. I've done the best I can while not making myself feel intensely worse, pass out, or throw up. It's made me feel horrible and guilty and useless to not be able to do as much as I'd like, but I've tried to do a little every day, even if it isn't all that noticeable and to be gentle and kind to myself, using some of the skills mindfulness has been teaching me.

We have finally gotten our insurance cards, so I can start seeing doctors again.

This past week has been devoted to coping with and recovering from a bladder/kidney infection. I wound up going to the ER Sunday night after attempts to tough it out from Friday onward failed. I think the last time I was in that much lasting pain was when I had my spinal tap. I was going to wait until Monday and find a clinic or something, but realized I simply couldn't make it through the night with the kind of flank pain I had.

Fortunately the ER staff were nice and I've had a week of Cipro and some pain meds that I've used sparingly. While I'm grateful for the Cipro, the side-effects blow goats. It seems to cause severe headaches (though that might have been the infection) that throb with the slightest movement. Far worse than the migraines I usually have. And no response to meds.
Gut pain from the infection was a problem to the point I had trouble sleeping until recently and I get a little flare of pain again now and again that could be my kidney or could just be a grumpy ovary or a weird back spasm.
Up until today I've had major problems brain wise - lots of forgetfulness, typos, silly errors, forgotten words, dropping things, running into things.

And I've started having major pain and stiffness when I get out of bed. In the arches of my feet and the sides of my hips. What the hell? Why those specific areas? I have no idea. Cipro can do weird things to tendons and muscles, so I'm hoping this will go away when I finish taking it and isn't some new, weird permutation of some part of my sickliness. I've had more generalized weakness/pain. I don't really know how else to describe it - usually in my shoulders and hips. Holding anything up above my head, even very light things is exhausting with the edge of hurt that usually means muscle failure is imminent. Really hoping that's a Cipro thing too, but I suspect it's more a thyroid thing.

Anyway, that's the health report. I've been working through a mindfulness workbook and working on acknowledging my feelings and states of being, including pain and sickness and discomfort and anger along with happiness and joy and anticipation and letting them be. That's part of the reason for the detail here. I also hope that others reading this and going through similar things won't feel quite so alone in it.

I have finally started crafting again. I've been doing some spinning, though I've been limited by that weird shoulder pain/weakness thing.

I ordered a bunch of soap samples from Chagrin Valley Soaps. I tried them in the past and couldn't quite get the hang of the shampoo bars and had trouble keeping the soap intact. I have shorter hair now and very different water, so I'm hoping for a better result. Also hoping the soaps might help with some of my random eczema and cystic acne and seborrheic dermatitis crap. My complexion is an absolute mess at the moment and it makes me sad in addition to being uncomfortable.

To help solve the problem of keeping the soap intact, I decided to crochet some soap sacks. Pop the bar in there, use it as a combo scrubby/soap, and then hang it to dry when finished. Sweet! Just finished the first one in about 45 minutes, using Cassiemarie's Soap Saver

In other news, Google + and Google Reader are pissing me off big time. I cannot find a way to share web pages directly to Google + via a share button browser plug-in the way Facebook, Twitter, and Delicious (and many others) can.
And the new Google Reader has apparently stopped working with the "note this in Reader" bookmarklet, which would also allow you to share webpages directly without having to open a new tab and cut and paste crap.
I am unamused.

Good Day

This week has been one long migraine, which hasn't been so wonderful. But, Twitter friends helped me figure out that it might have been forgetting my magnesium supplements that was at least contributing to the problem. Social networking and asynchronous communication at its finest.

Part of why the migraine lasted so long was also that I was being very, very stingy with my clonazapam because I was running low. We still don't have our insurance cards or account numbers so I'd have to fill things out of pocket. That wouldn't have been an issue except that the clonazapam script was written on the same sheet as two other meds, one of which would have cost $536 out of pocket for a 30-day supply. Apparently in MS, it's standard practice to fill all the meds on a sheet, especially if it's from a hospital (never mind that it was an outpatient clinic, the sheet from UofC says "hospital." So I asked if they could please, please let me just fill one and come back for the others when I have my insurance info. The pharmacy assistant at Walgreen's was fabulous and called around to see if she could fill it. Fortunately they could, because I was not looking forward to either going without my clonazapam or paying for everything and then trying file an insurance claim. We are covered and have been since Tom's first day of work, we just don't have proof of coverage. Bleh.

Anyway, getting the script helped a whole lot.

I'm never getting that arm pillow back.

Yesterday our new washer and dryer arrived. Oreo sounded much more ferocious than he actually is, because the delivery guy was standing well back from the door when I opened it. I had Oreo tucked under one arm and the guy peeked around me and asked if he was really the only dog.


I managed to drive over to fill out my HR paperwork to teach in the spring. And I ordered some evaluation copies of a few potential textbooks.

Today the migraine is almost gone. I've been doing laundry. And I went for a swim, which wore me out, but helped loosen up all the super tight muscles in my lower back (from scoliosis) and neck (from migraines). I only have a few more weeks to enjoy the pool before it closes, so I'm hoping the weather will stay warm enough. It seems to have temporarily helped with the swelling in my feet and ankles too.

For now, Oreo and I are sacked out on on the couch contemplating a nap.

Small Things

This week is Invisible Illness Awareness Week. My invisible illness has been smacking me around a bit, so I'm only today getting around to writing a post for it.

Oreo enjoying some sunshine and grass

Oreo (for new comers, Oreo is my 15 pound Shih Tzu/Lhasa Apso caretaker, companion, comforter, comedian, and partner in crime) was the inspiration for this post. At the moment we're staying with a friend until we move into our new place. Oreo is in the living room peering out the window and barking randomly while I'm in the bedroom nursing a migraine. Having a window he can see out of is a novelty for him, thus the barking. Usually he snuggles with me when I have headaches. He's a small thing and got me thinking about small things in a broader sense.

One of the popular tools to explain invisible, chronic illness is the Spoon Theory by Christine Miserandino. I encourage people to read the essay when they have a chance but in summary, it's a way of demonstrating how little things add up over the course of a day, a week, a month to sap the energy and wellness of many people with chronic illness, especially illness that causes fatigue. Another analogy I like is lightweight backpacking. Individual items may not seem like they take up a lot of space or weigh a lot, but the full combination can be a lot to deal with.

The small things that so many "normal" people take for granted can have big effects on us. Here are some of the small things that I used to take for granted:
- Showering. It's now something that requires me to rest for at least 15 or 20 minutes afterwards even though I use a shower chair, have very short hair, and use 2-in-1 shampoo/conditioner all in an effort to make it as efficient as possible.
- Washing dishes. Standing for extended periods often makes my lower back spasm and my neck knot up and seems to drain me of energy pretty quickly. Reynaud's disease interferes with the blood flow to my hands, fingers, feet and toes making water that is too hot or too cold physically painful. It can also make holding a cup with hot or cold beverage in it painful. Cup cozies are my new best friends.
- Doing laundry. Picking up and carrying a hamper makes my head pound and my back grumpy. Not being able to see the floor messes with my balance in a big way. Folding clothes is sometimes painful if my arthritis is flaring or I have migraine-related pain and stiffness in my neck.
- Shopping. The long walk around the store is tiring. The lighting and noise and motion is almost too much to deal with sometimes. Trying to remember what I need, even with a list is a challenge. Making a decision on which item to purchase can sometimes seem overwhelming.
- Watching TV. A migraine can sometimes make TV absolute torture. Days when my brain is foggy just makes it surreal and confusing.

But in the same way that little things can add up to make me feel worse, they can also add up to make me feel a bit better.
- Oreo is a little thing who can almost always make me smile, if only for a little bit.
- Hugs or commiseration or understanding from friends and family.
- A good book.
- Silly things on the internet
- Sweet, thoughtful things from my husband like a candy I particularly like or special snuggles.
- Meditation.
- Gentle stretching or yoga that helps keep me moving and helps with some pain.
- Satisfaction with small victories like showering or doing the dishes.
- Creature comfort things like a favorite body oil or a comfy hoody or a nice skein of yarn or wonderful fiber to spin.

Driving

Image via WikipediaOne of the things we're excited about with the move to Mississippi is that I might be able to drive again. I quit driving about 3 years ago when my health had taken a pretty significant downturn. I was having major problems with balance and depth perception.  I felt foggy and sort of disconnected a lot of the time. I was having pretty significant involuntary movements that would probably be really bad to have while driving. I also was having major issues with sensory overload - lots of motion and noise tended to be really, really disorienting.  So, because I didn't feel safe and I didn't think it was a good idea to risk injuring or killing someone, I quit driving.

Now, I think I can safely experiment with driving short distances with someone else in the car to see how I do.  I still have days where I'm foggy and slightly out of it. Sensory overload is still a problem - it's one of the major reasons I now HATE malls and grocery stores during busy times.  And my migraines can create or enhance depth perception problems. Pain and fatigue are also a distraction.  Medication is also a major concern.  I can't take anything that might be impairing if I'm going to drive.

But, my depth perception has improved.  My balance has improved.  I don't have nearly as significant an issue with involuntary movements.  Traffic patterns in Mississippi will be far less intense.  There isn't quite so much noise and motion with traffic, bikers, pedestrians, trains, buses, and skyscrapers all at the same time.  It's easier to pull off most roads.  I won't have to parallel park. 

So, the strategy I'm developing is to drive slowly (and stay in the slow lane while doing so) and try to give myself a little more reaction time.  Avoid driving in bad weather.  Try to drive only during quiet times.  Make sure I know where I'm going. Make sure I have pain meds that aren't impairing with me.  Keep a snack of some kind  and water with me as both low blood sugar and dehydration can be major contributors to migraines and CFS symptoms.  Make sure I always have my phone with me in case I get somewhere but don't feel well enough to drive back home.  Don't force myself to drive if I feel like I shouldn't. 

I have also discovered recently that lying flat on my back on a bench or something similar helps a lot with the sort of brain foggy-floatiness that I sometimes get if I've been sitting up or standing too long.  

All of the possibly impairing daily meds I have I take at night before bed which should help immensely with that particular issue.  Everything else is to be taken as needed and I'll just need to be sure I don't take it when I'm planning to drive.

I think we'll start out with very short drives and increase distance over time to see how I do. I'm really hoping I can drive again at least a little bit.  I would make things so much easier.  I could run errands during the day so Tom wouldn't have to try to fit them in to his workday or weekend.  I'd be able to get out a bit more and possibly have a wider range of potential employment. 

Dammit, George RR Martin

Image via WikipediaI finished A Dance with Dragons two nights ago.  Mr. Martin needs to cut it the hell out with the cliff hanger endings, especially if he is going to take brazillions of years between installments.  This is not good for my patience.

Otherwise, um, we're fiddling with my thyroid dose again trying to find the sweet spot.  I'll have to get the lab work done after we've moved to see if we got it right or need to fiddle more.
I have had another round of Botox shots for migraine.  Took a bit longer to feel (or not feel?) the numbness and paralysis in my forehead.  Still getting migraines, but not quite so many.
I am in an ongoing odyssey of trying to get replacement CPAP supplies and possibly repair before we move.  I have been trying for a month actually, but referrals keep getting lost or not sent and it is seriously starting to piss me off.  I am sensitive enough to stress and extra activity even with the CPAP but sleeping without it (or without it operating properly) will make everything WAAAAYYYYY worse.  And increase the time for my recovery to baseline functionality.  So, weeks or months to recover from the move, etc., instead of days or weeks.

I am still tired and shaky and hurty and having sleep problems after overdoing the packing last week.  Grumble.  The whole moderation and pacing thing with CFS is a pain in the ass sometimes all the time.

Still packing.  I have a lot of yarn.  Way more than I thought.  Mostly single skeins of acrylic or acrylic blend intended for amigurumi.  So I should, like, make more amigurumi and stuff.  Derp.

I have set aside my emergency travel projects and stash and a pile of actual paper books in addition to my Kindle.  I may have done that even before setting aside the important papers that should be easily available.

Oreo has had a bath and is grumpily curled up on my lap in a blanket to keep warm.  He finds the packing deeply confusing and a bit frightening and so has been even more of my furry shadow than usual.

Day-Glo Orange

Image by jima via Flickr

So, totally like these toe nails except pee.  In a toilet.

My pee is that color.

Felt like sharing that.

Seriously though, I've been taking a supplement with various B vitamins and that can apparently make your pee look like you've been gnawing on hi-lighters.

Then I got a UTI and the med for symptom relief turns pee super-super orange.    

This is kind of freakish.

And I'm on Cipro for the UTI.  If I were more uncomfortable, possibly hallucinating, trapped in the middle of the desert, surrounded by jackasses of the animal and human type, and praying for death it would be just like being in the field again.
(Cipro was the usual broad-spectrum antibiotic travel docs would give us for major GI infection, etc.  Reading the drug warnings was always awesome - ruptured tendon is one of the possible side effects.  So this usually left me working out in my head whether I felt bad enough to be okay with maybe rupturing a tendon.  Fortunately, if I couldn't even think that clearly I defaulted to just taking the damn meds.)


Anyway, the Botox seems to be wearing off as far as migraine prevention.  Although my thyroid is messed up again and the weather has sucked so that could be something to do with it.   All I know is that my forehead is very unwrinkled, I can't raise my eyebrows as much as I used to, but it feels like the connective tissue between my head and my right shoulder and most of the side of my face is actively on fire.  Also, I'm dizzy, my hands and feet have swollen up, most of my joints hurt, and my vitiligo is more obvious.

Right now the bright side is literally and figuratively my pee.

Do Not Taunt Migraine Monkey

Good news:  The Botox and/or CoQ10 supplements have helped reduce my migraines in frequency and severity (at least this week).
Announcing this publicly seems to have angered the migraine monkey.  I got walloped yesterday and especially today.

Today's involved one of my least favorite aspects of the migraine aside from the pain - hyperirritability.  Even after all these years of being a migraneur, the sudden rush or wash or wave of hypersensitivity to sound and flush of near fury is disconcerting at best.
I think it's only been in the past few years that I've been able to associate this with migraine.  Before that, I would just suddenly be pissy and feel like picking a fight for absolutely no good reason.  Part of me even recognized that I had no real reason.  Figuring out it's associated with the migraines has at least helped, especially because it cues me in to taking abortive meds.

It's a truly bizarre thing though, to go from being fine one minute to the sound of traffic outside or the TV or someone eating or the neighbors upstairs walking across the floor suddenly becoming nearly unbearable sources of infuriating irritation.

Still Alive

Image via WikipediaWow, time just runs away from me sometimes.

I've been a bit busy and distracted, so not as much writing has gotten done as I'd like.  I'm hoping to pull together a few posts and possibly even a bit of a redesign for the blog soon.

Oreo is most displeased that I have not spent as much time in bed lately, which consequently means that he has not spent as much time in bed as he wants.  He has actually tried to herd me into the bedroom.  And has also taken to going and crying at the foot of the bed or sitting on the side of the bed and barking to tell me he wants to go to bed.  At 1 in the afternoon.  Brat.

The weather lately has had me in a bit of a pain flair - arthritis and migraines, joy.  I've been coping as best I can.  The Botox does seem to be helping.  I'm still getting migraines (especially with crazy weather changes) but they seem to respond better to abortive meds.

Arthritis stuff is just a matter of trying to stay mobile and trying to keep NSAIDs from eating a hole in my stomach.

My eyebrows are not moving as much as they used to (or at least as I think they used to) and that continues to be weird.

Allergies are insane today.  As I said on Twitter, I feel like I've been snorgling a cat.  Gahhh.

We went to the Chicago Botanical Garden on Monday for an outing.  Beautiful, if a bit crowded.

And I have gotten some Vibram Five-Fingers and am loving them so far.  I feel a lot more secure when I'm barefoot, believe it or not, so these are a nice compromise.  I went with the Trek Sport kind so they are water friendly as well.  Very fun.  The only problem so far is the distinct lack of sparkles.

Still Alive-ish

Image via WikipediaMy thyroid is being stupid again so we're fiddling with Synthroid doses.  I've also been having a dreadful time with migraines and trying to catch up after the 2-week span of evil pestilence cold.

Anyway, hopefully the new Synthroid dose will get me back in the sweet spot of not too high, not too low and maybe help the migraines.

I've finally decided to give CoQ10 supplements a trial too.  There is good, if preliminary evidence from limited trials for migraine prevention.  The supplements are a pricey, which has made me hesitate trying it, but I'm desperate.  So, 100mg 3 times a day for 3 months and we'll see if it helps. 

I've tried getting back to daily exercise after slacking off for most of the winter (because I couldn't bear to take my slippers and socks off to use the Wii in the cold) and managed to over do it Sunday and am paying for it today.  Because CFS needed to remind me it owns my ass, I guess.  Anyway, finding the right amount of exercise will help the migraines too.  My neuro did warn me that too much can be as bad as too little.  Fun. 

I've been trying to discipline myself to meditate a bit in the mornings too, but I have trouble taking the time.  It feels like "wasting time" even though it may help.

Better news though is that the blood pressure med we've tried for migraine prevention is at least helping with my heart rate - it's no longer sky high all the damn time.  So, um, yay. 

It's also gotten cold again but not quite cold enough for the boiler to be back on for the radiators.  My hands and feet are screaming with Raynaud's and even my lips were purple earlier today.  And Oreo and I have been fighting over the heating pad.

Hoping I'll feel up to actual posts again soon.

Seesaw

Image via WikipediaI feel as though I've been on one lately. 
My depression has reared it's ugly and unwelcome head again, which has left me weepy and distraught alternating with okay and fairly cheery the past few days.  Bleh.
And the past month has been a weird span of increased fatigue and apathy and migraines interspersed with some okay and even good moments.  Bleh, again.  And all that has meant I've been less consistent with exercise, which has all of me creakier and more painful which doesn't help matters.

The freezing cold also doesn't help.  It's a major act of willpower to take my socks and slippers off to do yoga with the Wii Fit.  Brrrrrrrr.  Add in trying to do anything too motion-intensive or that involves inverting my head when I have a migraine and blech.  Although I guess my feet would be warmer if I barfed on them.

I'm also having a bit of trouble communicating with my therapist, which is something I hope to resolve at our next appointment, first via discussion or, if necessary, requesting to see someone else.  I'm nervous about asserting myself in this context, but resolved to do it anyway.  Failing to address the issue isn't going to do anyone any favors. 
Wish me luck. 

In better news, my new reading glasses seem to be helping immensely with some of my neck pain now that I'm no longer straining forward to read.  There's still some soreness, I think from my neck and shoulders readjusting to a better position, but it's not nearly as awful and I haven't had as much neck pain with my migraines. 

I also got a new chair today to use for crafting.  I'm hoping a comfortable, supportive chair will make it easier and therefore more likely for me to go play with polymer clay and my sewing machine. 

And I bought a book holder so it's easier for me to read when my arthritis flares up in my hands.

I am sincerely hoping a recent med change will kick in soon regarding the depression and the migraines.  I hate this crap, especially feeling worthless and awful and like some sissy drama queen and then feeling awful for feeling like that, and... 
I'm still not entirely convinced drilling a hole in my head wouldn't help.   Or a knitting needle up the nose?

Glasses

I have some.  For reading and other close-in stuff.  With light rose tint in the hope it will help reduce some of my over-lighting migraines.  Hopefully will also keep me from tilting my head forward to read, which strains my neck and contributes to migraines. 
I also seem to have sprouted mantlers.

My forehead feels all weird and tingly and so does my right eyeball, but I'm hoping that will pass soon.

Anyway, as I often do, I decided to look at stuff about eyeglasses on Wikipedia.  (You already knew I was a huge nerd.)
This led to me finding the following picture in the entry on pince-nez:

Does everyone think it looks like someone decided to deface this portrait of Francisco de Quevedo?  Or like he's wearing Groucho glasses?

Image by Getty Images via @daylife

Just What Is Progress, Anyway?

Image by brianjmatis via FlickrI had a follow-up appointment with my neurologist this afternoon.  She is blown away by how much better my walking is now than in was a few months ago.  And it dawned on me - she's right.  And that's good.
Now let me try to explain why that's a bit of an epiphany for me.
For so long, I was trying so hard to convince doctors and myself and other people that something was wrong that hearing "that's better" or "well, that doesn't seem to be happening now" or "that's not too bad" was infuriating. Intended or not those reactions were often tinged with more than a hint of "and you're wasting my time" or "there's nothing wrong." And so I've been resistant to "you're looking better" because I had started just automatically assuming the stubborn mindset of "no, jackass, there is something wrong and just because I happen to be having a good day today does not mean that every day is like this one.
I've also started to realize that while some of my problems are interrelated or come as a set, others don't. I think it's taken me a little by surprise that my walking has improved because other things haven't. I don't have a lot more energy or strength or stamina. I still need my cane. But I can walk fairly well without the cane without weaving all over or tripping over my own feet or starting/stopping or having my lower back and pelvis moving all over the place.
And I do feel better between my daily Wii Fit and weekly PT. Not "cured" not "100%" but better. Baby steps. And so I still balance between frustration and acceptance on a daily basis. The fatigue and weakness and general ick are things that I'm increasingly thinking I'll just have to live with. I need to not lose sight of the progress I make on the things I can actually make progress on like walking and basic fitness and (hopefully) migraines.
Today's appointment also wound up with me getting novacaine injections into some trigger points in my neck and shoulders in the hope that will help my migraines.
According to my PT, because my shoulders are usually rounded and I carry my head too far forward, I'm overstraining the muscles in my neck and shoulders, which is not helping me in general, but can definitely be contributing to my migraines.  So, we're going to continue working on that.  Suggestions are welcome - I would be thrilled to get rid of the permanent aching knots in my neck and shoulders, especially the ones that make it feel like my shoulder is going to wind up in my ear during the worst of my migraines.
We're also upping the does of my preventative med to see if we can get it to work. I'll be very happy if I can quit with the 4 or 5 migraines a week. They're bad enough when they suck up two or three days a month but most of a week is just too much.

Buhhhhh

Image via WikipediaSo even after 6 weeks on nortriptyline my migraines don't seem to be improving.  I've had 4 this week and no less than 2 each week since I started the nortriptyline.  Some of them I've been able to cope with.  Others have been really awful.
This has led to me slacking off on doing Wii and my PT exercises at home.  Not good.  Working on that.

I did, however, discover that if I really feel like I shouldn't do the Wii (as opposed to just being a bit lazy) I probably shouldn't do the Wii.  I had a migraine Friday but though "oh, well, if I just do some of the standing yoga poses so I'm not moving too much or lowering my head (that makes stuff hurt worse) it'll be fine and maybe I won't feel so stiff and sore."  I did the Warrior pose, the Palm Tree, and the Chair.  Half-way through the Warrior pose I started to sweat and shake, with the Palm Tree is was practically vibrating and started getting nauseous, and the Chair I nearly fell over and actually soaked through my shirt with sweat in a few places.  This was a 6 minute long workout.  I usually do 15 minutes and don't break a sweat even if it's a bit warm.  So,  yeah.



My involuntary movements have made a come-back as well, usually on the same day as a migraine.  Fun times.  I've been really, really stiff lately too - mostly muscles rather than joints from right after I get out of bed.  Yoga with the Wii helps a bit, so does a warm shower, but if I stay in the same spot too long, my back stiffens up.
My shoulders and neck are permanently tense again which is part of the migraine feedback loop.  And my sciatica or whatever the hell it is that makes it feel like someone is pinching my ass from the inside or sending laser beams from my ass down to my heel is flaring  up.

Anyway, I have a neuro appointment this coming Friday.  We'll see what else we can do with the migraines, I plan to ask about a specialist.  I've done some reading about vertiginous migraine which is sort of interesting and might help explain some of my balance problems.  Or not.  Whatever. I just want to stop having the damn things so often.  I feel like crap when I have them and can't get much of anything done, then I have the hangover, which sometimes lasts a whole day or more and then it seems like by the time I've recovered from one, another one shows up.  If I get too active too soon it can trigger another one (like last week when I had to hobble-run for a bus that didn't follow the proper route, missed it, and then had to haul ass for 2 blocks to make it to an appointment without being late; within an hour I had an aura coming on and within an hour of the aura the pain hit.)

I've also started having the occasional one on my left side.  In the past they were always on the right and even now are usually on the right.  So, maybe a specialist, maybe we'll up the dose of nortriptyline or try something else.  I might also see if it's worthwhile to have another sleep study to see if my apnea has gotten worse and is maybe contributing. 


The image is of cortical spreading depression, which is one of the models for explaining visual aura in migraines.

Trepanation

Image via WikipediaI think I understand why people used to use it as a solution for migraine.  I'm finding the idea rather appealing myself, right now.
For unknown reasons, my migraine frequency and severity has shot up this summer.  After flipping through my calendar I realized I've had a migraine every day this week and over the weekend.  A few of them have been ones that lasted more than a day.  Others hit later in the day or afternoon after several hours of blissful normality.

This is not cool.  Worse, I'm not getting good response to my usual abortive med - Excedrin.  This is a bit complicated by the fact that I've had more arthritis pain lately for which I usually take naproxen which hangs around in the body for 8-12 hours during which you're not supposed to take another NSAID.  Suck.
I've been using an ice pack.  I've been using my Neti Pot.  I've been lying down, doing gentle stretches, trying to relax.  I've been trying to have pain-med free days so as not to trigger rebound headaches or medication overuse headaches.
I'm in the second month of trying butterbur extract as a preventative (obviously with no result).  Unfortunately, the very hot, humid summer we're having along with lots of allergens are probably what's causing the problem and those aren't exactly triggers I can avoid without moving (which would be fine except for that whole we need jobs and a place to live thing).





This is bad enough as it is, but is now a really major problem as I've gotten a part-time job that starts next week.  (Yay!)  I can't really get to, let alone do said job at times when drilling a hole in my head to let the pain/demons/cerebrospinal fluid out seems like a good idea.

Nor does this ancient Egyptian remedy of tying a clay crocodile stuffed with herbs to my head seem all that appealing.  Well, actually pressure plus heat or cold does help sometimes, but I suspect if there isn't already something in the dress code about that there would be after I showed up with one.  (Though having rules made/added as a direct result of my actions is usually entertaining.)

In the past, I was on nortriptyline, one of the tricyclic antidepressants, for depression and discovered happily that it also prevented migraines.  Unfortunately I also gained a lot of weight in a short amount of time and had some weird blood pressure issues and a few other less worrisome but mildly annoying side effects, so I switched to Cymbalta.  So today I emailed my neuro and begged for help, suggesting maybe a low dose of the nortriptyline would help prevent migraine and not interact overmuch with the Cymbalta or be as likely to cause side effects.  She got back to me and agreed to phone in an Rx.   I'll check with my psychiatrist tomorrow to be sure they have no objection and hopefully my clever plan will succeed.  It may take 1-3 weeks to really notice a difference, but that's fine.  Hopefully the combo won't tip me into serotonin syndrome or cause any other nasty problems.  At this point, the risk is worth it, especially since I know what to look for.

Failing that, I may well try to start a fashion for clay crocodiles as hipster head-wear.

Either way - job!  Should be fairly low-stress, no one I met during my interviews seemed sociopathic, the job is done when I leave and I'll be bringing in some money to help pay down some debt and other stuff.  I can do other stuff like knit while I'm there so long as it doesn't distract me too much (so, stockinette in the round) and I'm hoping I'll still have the energy to keep slowly plugging away at getting some crafts ready for sale.

Granny Square

I agreed to contribute a square to a sympathy afghan for a friend of a friend who had a sudden health crisis in the last few months. Finally got around to actually making the square today.

I used a pattern from SmoothFox - a Celtic Granny Square and worked it up in some Pine Simply Soft Eco. It went much faster than expected andI think it turned out lovely. The free pattern includes instructions for single or multiple colors, so I may works with this a bit more in future.

Plus I got to use one of my polymer clay handled crochet hooks.

I did most of it sitting on my zafu while watching the first episode of Elizabeth R. My back is less than pleased about this. I've now retreated to the couch and my "boyfriend pillow" and heating pad.

Not terribly much else going on lately. I had one of my very bad migraines starting Thursday night with the major pain lasting through Friday and residual suckage through today.  The concurrent thunderstorms aren't helping.
I've also been a bit depressed, but I suspect the migraine had a role in that.

Hoping to get going on some other projects this week.  I'd like to try designing my own amigurumi for sale as finished objects and/or as patterns, but keep feeling inadequate to the actual task and so keep doing loads of "research" into pattern templates, etc., etc., without actually doing anything.
The same with polymer clay stuff.  Must actually do instead of just thinking.
There's also sewing to be done.  I'm finding long-ish skirts more and more comfortable lately for a variety of reasons and would like to make some out of cotton in some good neutral colors.  I've got fabric and pattern for jammies waiting.  And I've still got an excessive amount of buckwheat hulls and a ton of fabric a lovely friend from Ravelry sent to me waiting to be made into pillows and hot/cold packs.

I also need to quit daydreaming about the homestead.  It'll happen when it happens.  Chickens!  Vegetables!  Goats!  Bunnehs!  Horsies!

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.

Dumping

Last night I started seriously going through boxes of paperwork and clearing things out. It was very liberating to trash so much heavy paper. Most of it was the detritus of several years of graduate school - copies of articles that I will never read again, papers I wrote, notes, etc. I am offering some of it up to friends, but I suspect most of it is going to wind up trashed or recycled. If any of my readers want copies of articles on ceramic analysis, Egyptology, or anything else let me know. I'll ask you to pay shipping if you're not in the area, but they're all yours, snarky comments in margins and highlighting included. I can pull together specifics on titles, etc., if anyone really wants them.

Unfortunately, I also had the start of one of my worst migraines in quite some time last night. Serious nausea. It's still ongoing, but has finally faded to typical migraine level for me - which means I can still semi-function even if I am disinclined to move or talk much and noise and smells bother me. No TV either - oddly reading helps or is something I can do (I usually can't sleep through my migraines) to take my mind off the discomfort, but watching things just doesn't work.

We have an apartment viewing scheduled for tomorrow - our first look outside the neighborhood. Should be interesting - this place supposedly has an included washer and dryer, a fireplace, a large kitchen and some other nice features. It's also even less expensive than what we're paying now, let alone what we might have to pay if we stayed in Hyde Park and wanted a place comparable to what we have now. Rent is ridiculous.