Hipster Habit App; strategies to cope with pain

Last week I printed out my friend Amelia’s Hipster Habit App to try it out. How much more could I possibly love this little site that is just a one page pdf that you print and fold into a tiny pocket zine, but calls itself an “app”. Yay! So silly and awesome!

Zine cover

I wrote “naps” into the blank and circled “chilll time” as extra reinforcement. On the second page of the zine I committed to lie down and close my eyes for 5 minutes a day at noon, every day.

After the first try at this I thought that I should go back and change it to 10 minutes. Five didn’t seem like enough. It was just enough to lie there feeling pain in my knees and hands, fingers and ankles, and for exhaustion to surge over me like a horrible heavy blanket. At the same time I had a million ideas of things I needed to remember to do, lists to make, errands to run, work emails to send, weird inventions, things I wanted to cook. So many impulses to leap up and grab my notebook to write down the lists! Instead I tried to drift into incoherence, even drifting with the pain, and think about breathing deeply and calmly.

Actually, 5 minutes of that is plenty!!!

After a week of 5 minute “naps” I find that the habit reminds me to slow down. It makes me realize that I should take some painkiller (currently tramadol, and topical voltaren), AND rest, rather than run myself into the ground over the day. 20 years of weird annoying arthritis means that my main strategy of life is to ignore pain as long as I can until I absolutely drop. Distraction is a great way to deal with pain. Fidgeting and stretching also keeps me from stiffening up so I get up a lot from working even when working from bed.

It helps me to consider my activity level that day. Am I walking too much, sitting with bad posture, do i need to adjust my activities planned, put off doing errands or laundry, get help from other people, stay home, put on ice packs, lie down more? A useful reminder to consider those things.

After a month according to the zine I could increase my habit by 10 minutes. Actually, I’m hoping one of these days I’ll really fall asleep and have a nap. That would be so good for me, but it’s so hard to do when my knees and ankles hurt so much. I look back and can’t comprehend how I coped with last year’s pain levels. I will try never to stand for (hahaah) that much uncontrolled pain again. It is criminal that I was expected to. It’s good to have better medical care. Tramadol is working out well, intermittently when I need it, as it cuts the pain level without making me feel dopey or fuzzy minded. In fact I feel pleasantly amped up even with half a tramadol. Most of the day, I can think clearly, focus my mind, and have lots of energy. Some of that might be a side effect of the drug, but I think most of it is just being more free of pain. Pain is exhausting!!

Compared to last year at this time, I am doing amazingly well. Last August I was still on medical leave only just barely starting to be able to walk without the moon boots (aka walking boots for ankle injuries) I still had 2 or 3 wedges elevating my ankles inside the boots. Without the boots I was still shuffling. Now I can take full steps with a weight shifting gait for most of the day. I can go down and up some stairs, almost full on instead of sideways, though sideways is still much easier, with a cane. I thnk it was my enthusiastic stair climbing that really got my ankles in late 2011, so more caution would be wiser.

One more anti pain tool in my belt is that I have my San Francisco medical marijuana card. It was hilariously easy to get. I am curious to go into the nicer dispensaries around town to see what they are like. So far I have only been into the Bernal Heights Collective one, which was like a sort of seedy cafe/biker bar atmosphere and awfully smokey inside. I bought some hand salve, which is helpful at night on my distal finger joints, which hurt the worst, and doesn’t seem to affect me in other ways other than the one time I got carried away, smeared it all over my wrists and knees in desperation and curiosity, and fell asleep high as a kite. In moderate amounts on one’s knuckles it doesn’t have any euphoric effect at all, and is very helpful for pain! If you have painful arthritis or know someone who does, let them know. Pot hand cream all the way!!

The other factor this year is that I have steroid injections every 3 months in my sacroiliac joints. Can’t remember when my next one is due but I am wishing for it on the right side, the last couple of weeks (my bad side, that makes me limp and drag my right leg). I also am in month 8 of Enbrel injections (an immune suppressant). I inject it every week into my stomach. It is funny but every time I think of my mom telling me when I was little that if you got bit by a rabid animal, you had to have INJECTIONS INTO YOUR STOMACH, which sounded like the worst, scariest, grossest thing ever, even to me who had allergy shots once a week in both arm that would swell up like subcutaneous tennis balls. I find that injections into the stomach at least with a bit of cushioning is easily bearable. Though I have pierced my own nose and given birth with no anesthesia so you might not want to take my word for it . . . I’m a complete badass.

Sometimes I kind of forget that other people are not in horrible pain all the time. Like they just aren’t in pain at all. They tweak a muscle or something and are like “Ow!” or they get a cold. Then I remember that, when i compare myself to other people and I worry that I might be lazier or wimpier than other people, it doesn’t actually work that way. It is something I have to constantly deal with and, not fight, but just be with. It is a constant factor. This actually means that I am good at dealing with pain, and know how; it’s a skill. It’s a bit like I am a secret magician deploying force field armor around myself or have some extra sense into the world of, you know, the internal bits of my ankle tendons or whatever. One more thing about pain while I’m on a ramble: it is very true that you (me) can be in pain all the time, yet be extremely happy, and have a good life. I would say that it takes time, endurance, and work for that to be true. It may also be luck of temperament.

OK…. maybe that is enough.. the hand cream might be kicking in.

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Supporting The Ada Initiative, and making more room

People ask me all the time what they can do to help change our culture. How to get more women in F/LOSS, in tech, get more women coding and working with us? I have a suggestion! Please donate to The Ada Initiative! I realy believe that it’s helping, and wil continue to help!

Personally I donate monthly to The Ada Initiative as well as participating on its advisory board. Over the past couple of years I’ve benefitted directly from The Ada Initiative as I see conference after conference put anti-harassment policies into place, which TAI has worked hard to facilitate.

Earlier this summer I had an amazing experience at AdaCamp in San Francisco. The Melbourne and DC AdaCamps bore fruit too, as they connected so many women in open tech and culture with the communities I’m already part of, and made us visible to each other.

The synergy from the feminist hackerspace discussions at AdaCamp SF led to the first meeting for a new feminist hacker and maker space in San Francisco. After a whole weekend of talking at AdaCamp, it was like we couldn’t stop! I ended up with a dozen or so fierce activist women in my living room describing their vision for how we could make actual physical room for our projects and ourselves, a space we would invent, define, and maintain. It was really a dream come true.

As an long-time feminist activist, I have felt tremendous relief from the amount of peer support I’ve gained from working with The Ada Initiative. The people who are part of TAI have a tremendously sophisticated view of what we’re doing and why we’re doing it, and what we need to make it happen. I deeply appreciate the professional commitment of everyone at TAI and everyone I met at AdaCamp! That’s part of why I’m posting to ask you to donate. It’s important to make support for women in free and open source tech and culture truly part of our infrastructure. We can do that by funding that work! Here’s some ways to donate!

Donate now tai

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That all crucial three dollar check

So, disabled people in theory get to ride public transport at a discount rate in San Francisco and in fact in the entire Bay Area. To get my disabled rate card for the bus I had to bring my accessible parking placard to an office in Downtown SF and pay some nominal fee for a card. This proves I’m disabled I guess. Most transit cards, you can just buy at a Walgreens or in the train station.

That errand took nearly a whole day for me to take the bus, wait around in this office, get sent to the DMV for some reason I couldn’t fathom, spend hours at the DMV, get back on my 4th bus of the day to the Regional Transit Center office on Van Ness. Pay my 5 bucks or whatever it was and be done. I got a plastic card with my photo & an RFID chip. But this is already bullshit. How much proving I’m disabled do I have to do here for this petty benefit? Can’t DMV make it known upon request that yes, in their eyes, I’m still disabled?

Once I had the card – maybe a month later — I could get online to refill the card and even set it up to refill automatically once a month. That part was nice.

In July, I got a badly xeroxed form with a handwritten note saying I needed to check a box to say I was still disabled, and write in the number of my parking placard. I also had to enclose a check for $3.00. Ridiculous!

So I sent this form in a couple of weeks ago. Today my bus pass suddenly didn’t work.

I called the Clipper card people who told me to call RTC which is run out of some company called Cordoba. They said they were getting tons of phone calls, because many people hadn’t gotten their renewals yet.

The phone call with RTC was just frustrating. They acted like they were angry with me and were very condescending. “Well, did you SEND IT? Did you send it to (po box and address.) How do I know? I sent it to the address it said. “Well did you enclose a check for $3.00? If you put cash in, that doesn’t work.” Yeah I’ll bet it doesn’t. They haven’t gotten my renewal letter, and didn’t have any suggestion about what to do other than wait.

The whole process is so silly and inefficient. They need to recognize that lots of people aren’t going to become magically un-disabled, and save themselves a lot of petty paperwork. I wonder what actually happens to that piece of paper I got mailed? No one needs that damn piece of paper! And I don’t think they need any yearly check for 3 dollars either, isn’t that what we pay taxes for?! Really you are gonna hassle every single cripple in the Bay Area every July for a check for $3.00?

I bet that has bad results especially for all the people I see downtown who might not have their shit together to the degree I do. I doubt the intended service manages to serve this population well.

/end rant.

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