A little bit more about ankles before I move on and talk about all the books I’ve been reading!
After a couple of weird and frustrating visits with a new doctor I switched doctors again and hit the jackpot, with a kind, earnest, detective-like internal medicine dude who sent me off to the UCSF Orthopedic and Rheumatology clinics and then saw me afterwards to mull things over. The upshot of that is I have tendinitis in both Achilles tendons, some messed up other ankle tendons plus bursitis on both sides. My theory (and everyone seems to agree) is that I got too enthusiastic about walking and stair climbing and was treating pain as something to make me pause slightly and then “push through” so as not to be lazy or malingering. Tendons don’t play that way… They would like three to five months of ridiculous attention in order to recover. This is depressing though it is nice to hear the word “recover”. It means I can’t really go home to my boat. I am homesick and sad. I miss driving. It is daunting to get around in my wheelchair while in this much pain (and with giant boots on). I am on leave from work and I don’t have energy to do anything much.
I now have some clever heel wedge things that peel off in layers, big old space boot thingies to walk in, some lighter and comfier night braces for being in bed, lovely velcro ice packs that go around my ankles, and NSAID topical gel (voltaren) since I can’t tolerate regular NSAIDs. I was begging for prednisone but it looks like prednisone is exactly wrong and makes your Achilles tendons rupture. I do have some emergency Vicodin and now this Cymbalta stuff which seems promising but which is putting me through side effects… dizziness, nausea, jaw-clenching, and all that (but it did help me immediately not to feel so upset).
In Phase One of my conquest of space, we calm everything down, singing gentle lullabies to my ankles, avoid walking (while magically somehow achieving aerobic exercise) and wear these boot things with the wedges in them. I sit around distracting myself from pain and side-effects. Three or four times a day, I Voltaren up my ankles, do some PT exercises, wear the ice packs, and then it’s back into the boots. Through the magic of Amazon I got a shower bench (there is no bathtub.) At first I had a kitchen chair in there and then faced up to the reality that I needed a real bench with good stability and rubber feet and all the works. (Plus we only have 2 kitchen chairs and there are 2-4 of us in the apartment.) I get up and make my coffee or Danny makes it for me. Then I switch between reading books, reading stuff on the net, and doing my exercises and ice. At around 3pm, if it’s sunny out, the sun hits the sidewalk in front of the house, so I go outside to sit in a lawn chair (classily, on the sidewalk in my pajamas).
I went scouting to the local indoor pool and had a nice swim at the Disabled Water Exercise hour with a lot of fabulous women in bathing caps and some very friendly lifeguards who DJed for us and took requests. I used a lift to get in and out of the pool for the first time in my life. A confession here. I am not really able enough to push myself around in the manual chair to get there and back on 2 buses. The ramp up to the pool building just about does me in as my right hand and arm don’t cooperate and hurt a lot. But I can just barely do it. As of today (thanks to my fabulous boss at BlogHer and his wife’s late dad’s scooter which has been in the garage for a year) I have a little Zipr 3 travel scooter with a 12 Ah 24 V battery so I am hoping that will hold enough charge to get me to the pool (on the bus) and back. (I think I have to buy it new batteries tomorrow.) Otherwise it is around $30 in taxis plus $7 to get into the pool. I would prefer the bus at least one way since it’s cheaper and more fun. The pool was cold… I haven’t gone again yet because it’s been cold and rainy. I went to a day spa instead and saunaed myself for 3 hours.
I should also mention I started this trip with one ankle bandage brace that was moldering under the bathroom sink. Then got a second one. I felt that maybe people would see my ankle brace usage as some sort of Hysteria. Then I realized that part of why it hurt when I tried to leave the house was because my shoes touching my ankles hurt like fury. Then I got out the giant space boot that I used last July when my left ankle went all strange. The space boot was AWESOME. Then I mail-ordered a second boot from Amazon ($50, when the first one from the orthotics clinic cost me like $200…) The boots were slightly different from each other. So by the time I showed up at the orthopedist I had these embarrassingly unprescribed boots on. (No one minded or threw me out of the clinic for self-medicating myself with space boots.) I got the awesome Night Boots from their orthotics people, and the heel wedges to put in them. Over the last couple of weeks I realized I could do with a smaller size of matching walking boots. So I ordered them and a 2nd set of heel wedges so that I don’t have to switch the wedges from night to walking boots every time I switch which is like 10 times a day. Amazon Prime is very, very, useful if you are disabled, as is cold hard cash to buy things off it with.
In Phase Two about a month from now assuming my tendons have achieved a calm and stable orbit and the rest of me has not completely atrophied, I will progress to Strengthening which sounds difficult and scary. I resolve to swim Every Day Possible until I am amazingly healthy. I will pretend to be a polar bear. Physical therapy will happen three times a week instead of once. I will do amazing things with Thera-bands.
I think there is a Phase Three where I reach Mars but I’ve forgotten what happens then.
The pain has gone from being intolerable and maddening, to being just all-over stabby and achy ankle pain, to several separate kinds of pain behaving differently in different bits of my ankle depending on what I’m doing. I assume that means it is getting better!!! The sciatica-nerve pain I live with a lot of the time anyway. It’s very familiar. Also, numb/buzzing in both feet (and hands) aka peripheral neuropathy. The sharp splintery scary pain like million icicles is the Achilles tendons. The dull horrible pain at the base of my heels is the bursitis which makes it hurt to stand up at all (boots or no boots). The wobbly wrongnesses on either side of my right ankle are the posterial tibial tendons and, um, some other ones on the outside. That is the bit that makes me afraid to stand up in the shower. It’s important to get to know what’s going on with pain and what it means. If you’ve been in a lot of pain it’s still a surprise when it comes back or when you find out there are whole new kinds of pain and places to hurt. But once I can break it down into different things, I feel a little more in control of things (even if I’m not). It is getting to name it and knowing what it is, partly.
While it is scary and annoying and depressing to be dealing with this I have to say it is as good as it could be. I have tons of support, I have short term state disability while I’m not working, a warm and cozy place to live, and my partner and our kids are just great. I don’t feel like the most stellar parent (as usual while in lots of pain) but we get by. My parents also helped me out so that I can do things like do my errands with TaskRabbit, take taxis around instead of going through paratransit (though I am going to sign up for it anyway) and order books and space boots and Thera-bands galore off Amazon. I have a zillion beautiful friends who talk with me on IM and IRC throughout the day and night, recommend books for me, and say “there there” in comments when I complain and cry all over my not-very-secret-secret diaries. So I’m very grateful for all that and am also glad I have decent medical care and advice. I look forward hugely to scootering once I get a new battery for this little scooter beast.
I miss my boat, being on the boat with my son, seeing him during the week and helping with his homework, all our boat neighbors, the birds outside my window, the water and light in the harbor, the tide, kayaking, my bike, walking casually into stores and looking at things, grocery shopping at Chavez Market in Deadwood City, the nice people at the wash and fold laundrette next to Chavez, watching my son’s rehearsals at his hip hop dance studio and all the people there, picking him up from school, the library, driving alone with loud music on, randomly deciding to drive down interesting looking streets or going a new place on the map just to see what’s there, all my stuff and books and clothes, housecleaning (weird, i know…), bustling around a lot, doing Projects, my cooking stuff especially my toaster oven, and being able to drive people places and do them favors.
I have been to Noisebridge twice this month (and printed things on the 3D printer, finally!), went to lunch and the fabulous day spa with yarnivore and yatima, and another time with queershoulder; to physical therapy; and to half a day of She’s Geeky where I ran a discussion that was basically “What Would Black Hat Feminist Hackers Do?”. I also went to a cafe with my sister and to another cafe with my friend hazelbroom. That isn’t too bad for outings. I go kind of stir crazy in here staring out the window and at my screen and feel that life sucks if i have to be in bed for days and days and days. So any time I get to go out (even to the doctor) the world looks especially shiny and I love everyone and I come back all charged up with extrovert energy.
I’m about to go to London by the way because, fuck, free trip to London, I am dying to go to (and speak at) this conference, and I’ll be damned if my ankles not working is going to stop me. (See below for photo with airport gate tags hanging off my wheelchair.) I will have to spend a lot of time in bed in the hotel, but it’s a nice hotel, it’s accessible, there is room service and internet, and it’s near a lot of cafes and bookstores and the British Museum and the Central London YMCA, which I will pay 50 pounds to join for a week so I can swim. The bad part will be the plane ride but I have pain meds for that and will also bring my ice packs. I think the flight attendants might refreeze them for me if I ask nicely.
The sauna place deserves particular mention in being a bright spot in my month. It is fairly accessible, with a lift to get up a couple of entrance steps (they leave the key in it!) and no stairs anywhere else. In the entry hall, there is an accessible bathroom. There’s a smaller toilet once you’re in the locker rooms which would not be accessible to most wheelchairs (though I managed). I did okay with my manual chair in the bath house area which is a big open room with benches and showers (seated showers), wet sauna and dry sauna rooms, and a cold and a hot pool which are on a raised area i.e. not as accessible. I got into the hot pool by hitching myself up the side of it, hanging onto a pillar, and then sliding in like a seal. If you need help transferring then there is probably no way. There is tea and ice water and lemons and little cups of salt to scrub yourself with, which if you are foolish like me you think is an unusually un-hippie-ish nice touch of providing sugar to make lemonade with. No! it is not sugar. Perish the thought. Do not attempt to sugar your herb tea (like I did!). The other funny thing about this spa is that it is hipstertastically solemn and full of fake Zen. So there are buddha statues and lotus flower things all over and there is a gong you can bang on if people are having a good gossip or giggling in a way that perturbs your Meditative experience. I wish they had Loud Hour because I would far prefer, when naked in a sauna scrubbing myself with a slice of lemon and some salt, to be surrounded by gossiping laughing women rather than solemn culturally-appropriating church ladies with a lot of tattoos. While reclining in an Adirondack chair panting from the hot tub and sipping my iced lemon-cucumber water I was idly looking around and saw in the locker room window a strange paper cutout decoration that … that looked exactly like Jokey Smurf holding a present. Then the universe shifted and I realized it was the lotus flower logo of the day spa. I started laughing as I shifted the lotus flower to Jokey Smurf and back again and imagined the sort of sauna that would have an exploding terrorist smurf as its logo. I couldn’t TELL my friend my thought since we would be GONGED so I hitched myself into my chair, went back to the locker room, got my notebook, and settled back down in the lounging chair to write down all my silly observations for posterity.