Thursday, February 25, 2010

Disability Blog Carnival

I submitted this post on Fighting to the Disability Blog Carnival over at the disability community at dreamwidth. This edition is about relationships.

There are a lot of fantastic writers over there, and I highly recommend you go take a look. Disability Blog Carnival #63: Relationships (February 2010 edition)

Wednesday, February 24, 2010

Recommended Reading

I have been taking full advantage my local library. Actually I've been taking advantage of all of the libraries within 15 miles, which in my urban neck of the city, includes nineteen fully stocked libraries. I just go to their website, peruse their catalog at will, click the "request" button on as many as ten titles at a time and wait to get the email letting me know that some or all of my order is waiting for me. I LOVE my local library.

I'm going to try to make it a regular thing, to be reading something about chronic pain, migraines, chronic illness or the like, and share my thoughts and recommendations. It's good for me to have as many perspectives as I can. It keeps me tethered to something. If that makes any sense.

Anyway, my first batch of reads (with amazon links) included:

Life Disrupted, Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards, which I really loved. I mean, I inhaled this book. It's mostly light, as light as chronic illness talk is, anyway, and is mostly personal stories of experience from people who are young, sick, and dealing with it. I read this at the perfect time. It was like craving a favorite food all day and coming home to find it waiting for you on the plate, piping hot and perfect. I came away with it feeling a little more capable, and a little less alone.

Managing your migraine: a migraine sufferer's practical guide by Susan L. Burks was recommended to me by a fellow migraineur. On first glance, I figured I would know everything in the book and then some. It was published in 1994, for god's sake, that was an eon ago! But the presentation of the information was different, and I found the chapters on alternative treatments and dietary recommendations very interesting. I'll probably be renewing this one so I can read through it a few more times.

Trigger point therapy for headaches & migraines: your self-treatment workbook for pain relief by Valerie DeLaune was another good resource, but I mostly skimmed this one. I found the physiology lesson interesting, but was in it more for the exercises. It's definitely worth a look.

I have a whole new stack waiting for me, too. I'm reading like it's my job, and it's nice to have a job again.

I would love recommendations of new titles to check out. Read any good books lately?


Thursday, February 18, 2010

Marijuana Helps Ease Pain (O RLY?)


"The state-funded California Center for Medicinal Cannabis Research announced that its studies have shown marijuana to have therapeutic value in a report released on February 17.

The ten-year, $8.7-million medical marijuana research program, established at the University of California in 2000, reported positive results in six different human clinical trials regarding chronic pain, spasticity and vaporization.

Four of the CMCR studies found cannabis effective in treating painful HIV neuropathy, (Ellis, 2009), neuropathic pain (Wilsey, 2008) and migraine headaches (Meng, 2003); and as a "modest analgesia" in capsaicin-induced pain (Wallace, 2007)."

Read the full article here. Or go straight to the study: in pdf format.

This is obviously not news to me, being a proud card holder. In fact, I did my own sort of study this week when I ran out of marijuana and had to resort to using pills exclusively. My pain was NOT under control, I was less than half as functional and I haven't pooped in four days.

Viva la pot.


Monday, February 15, 2010


I shocked and confused a doctor (without even removing my bra).

I had an appointment today for an unrelated issue and during the course of conversation, my boyfriend said something about me being disabled. The doctor stopped totally and repeated it back to him, not me, with more high-pitched incredulity than I have ever heard come out of a middle aged-man, "She's disabled?"

I just started laughing. It was the oddest response from a doctor yet, and I can't fathom what was going through his mind to make him sound so shocked and confused. I mean, he's this old curmudgeonly doctor, right? He's seen it all. And little ol' me made him go WHAAAAAAT?????

It was funny.


Thursday, February 11, 2010

Victory Smells Like Pickles!

Last week, I got a long overdue haircut. I'd actually needed one before christmas, but because of lack of money and energy, I opted to give myself a little trim instead. It didn't turn out too bad, but mostly because my boyfriend has the skills of a ninja in straight line cutting. Fast-forward two months and my hair still needed a proper cut and now it also needed to be fixed because I couldn't keep my eager little hands (scissors) off of it and my second attempt at self-styling wasn't nearly as successful as my only somewhat successful first.

So began my quest for a haircut.

It started with a google search. Local hair salons. Then my boyfriend called a few of the closest for prices.

I knew the dangers ahead of me: heavily scented products, hairdryers, being asked to hold my head this way and that, overhead lighting. So I packed my trusty bag full of items that would head off or cut off a potential trigger, like cough drops, heat rub, three sizes of earplugs, drugs and water.

We found a salon that met our needs. We walked. We arrived. We opened the door. I almost fell over. I forgot how strong the smell of salons can be, and this was a full service place, so we're talking acetone, aromatherapy, and hair dye in addition to the expected haze of hairspray. I popped a menthol lozenge immediately. The smell was bad, but I was determined to get my hair cut. I dropped my bag on the ground, hung my coat on the rack next to a few others, and had a seat.

The woman who cut my hair spoke limited english, which was fine by me, I'd rather avoid the mindless chit-chat, it's such an empty waste of spoons. I told her right away: no products. "I'm allergic, sensitive." She nodded and repeated back to me, "Oh, ok, you are sensitive." I relaxed. The overhead lights were really bothersome, and sunglasses are just not practical while getting a haircut, so I closed my eyes. I waited for her to ask about my earplugs, but she never did. Ever since I stopped using shampoo I've felt self-conscious at the salon, like they would judge me unclean (even though my hair is a million times nicer and easier to care for without the commercial products, and is never, ever unclean). But she didn't seem to notice a difference. Or she was too polite to say anything. I was pretty relaxed until I heard the stylist rustling around in her station and cracked open an eye to check on her.

She was just about to come at me with a hairdryer and my reaction was the same as the last time a dentist came at me with a needle, I flinched so hard I nearly jumped out of the chair and exclaimed, "OH! NO, THANKS!", a little too loudly. She was nice about it, but she put the dryer back slowly, watching me the whole time, like it was a gun and I was a nut she was trying to talk into releasing the hostages. I smiled at her and she smiled back, warily. She finished the cut quickly and I was pleased with the result. Her boss came over and her perfume asked me if I liked my hair. I gasped that I was happy and bolted for the door, barely pausing to grab my coat and bag on my way out.

My boyfriend paid the people while, outside, I gathered myself. I breathed in the cold winter air, feeling light and cheerful, and my newly short hair whipped in the wind. Then I put on my coat. And I couldn't breathe.

The coat rack I had hung it on? Right next to two other coats? Yeah, apparently perfume transfers really easily. I walked home with my scarf over my face, trying not to freak out. I loved my hair. I was so happy. But my head was starting to edge up in pain levels and my vision was going wonky. AND my spanking new wool coat was unwearable. Well, I could wear it, I just couldn't breathe at the same time. And it is dry clean only. And we are broke, having just spent a good chunk of our not-food money on my hair.

So, I tried to wash it, despite the label. Cold water, light agitation, detergent and baking soda AND a vinegar rinse. Still stank. I washed it again with a shit-ton more of baking soda and a gallon (not really) of vinegar. IT STILL STANK. I was afraid to wash it again, that it would mess up the coat, so I switched tactics. I sprayed it down with mild water and white vinegar mix. It dried and GOOD GOD IT STILL REEKED like desperation and insecurity (perfume). So, I tried one more time, thinking: If this doesn't work, I'll cave and find a dry cleaner. I sprayed the mother down with probably an 80% vinegar solution and now... it stinks to holy hell like vinegar.

But there is no trace of perfume! Success!

The vinegar smell is slowly fading, but I don't mind it. It smells like victory.


Friday, February 5, 2010

Hydrotherapy at Home

Taking a bath has not always been my idea of a good time. Sounds boring and germy, really. But just this last week, I've discovered the zen of tubbing.

I took baths when I was a kid. I'm sure there is more than one naked photo of me in a tub floating around, and it probably includes more than one of my cousins as well. Bath time used to be a sort of playtime. There were toys, and bubbles, and the world of pretend was inspired by the expanse of water before me. Somewhere around puberty baths became boring. I lost the art of pretend and never could be convinced to bring my books in the tub. Then I started getting chronic UTIs and was told to never, EVER take a bath again. It turns out it's not a good idea to soak your girly bits in bubbles and germs anyway. So, my already non-interest in bathtubbing became a strong distaste and I hadn't sat down in a tub for twenty years.

It was too long, my friends, too long.

Last week was a bad head week. Two separate, full-bore migraines, one after the other, had left me so weak, so sore and stiff, and so irritable and exhausted. My boyfriend suggested taking a shower, but I really couldn't stand that long. He suggested a bath and I made a face and he laughed at me, "You don't know what you're missing."

So, I considered the pros and cons of taking a proper bath vs showering. Soaking in bodily muck vs. being clean. Sitting vs. standing. Water caressing and floating my poor, exhausted muscles vs. water flowing down the drain SO wastefully. And I convinced myself.

I think the key to the girly bits is showering first. I don't know if this is irregular in the bathtubbing world, since I'm such a newb, but I find that washing up quickly before filling the tub makes it feel less like a bacteria-soak. Once I am clean, I flip the stopper switch and the tub slowly starts filling. Then, I just lay down in the tub as it fills, letting the shower pelt me with hot rain, and the rising waters buoy me. Add in a little meditation and this is the most relaxing experience I have ever had. The tub fills, I get lighter, my muscles unclench, and I just breathe. Once the tide is in, the water goes off and I soak for as long as I can. Sometimes I get up within a few minutes, other times I lay there until the water is cold.

I've got to admit, I do worry about wasting water. I grew up in a drought, it's always in the back of my head when a tap runs for more than is absolutely necessary. Bathtubbing will never be daily thing for me, or even weekly. But damn, is it soothing when I can get over my germ issues and wastefulness aversion long enough to get in a good soak.

"There must be quite a few things that a hot bath won't cure, but I don't know many of them." -Sylvia Plath