illness – Composite

Stuck at home with shingles

July 11, 2015 Liz

I came down with shingles a week and a half ago. It’s in a stripe around the left side of my torso. It’s been a weird adventure. The skin where the rash is burns and has allodynia (sensitivity to touching anything, and even to air). The muscles ache and spasm and are weak. It is physically intense. I am dizzy and groggy from the nerve pain medication, and feel strange from the burst of prednisone. It is quite odd to have pain and dysfunction in a new spot on my body. I got antivirals very very quickly using a local doctor housecall service.

I am already disabled and deal with chronic pain; there are good and bad sides to that. The good side is that I have many coping strategies to deal with pain and impairment, practical skills and emotional skills. The bad side is I am often right on the edge of overloaded, and this pushed me over it. The other thing is that I have to remember firmly this is 95% likely to be temporary. It isn’t something I have to adapt to forever and learn how to live with. I just have to rest and get better! This book, The Pain Survival Guide, is very helpful and pragmatic.

I will lie here like a sort of cosily beached flannel coated manatee, gently hallucinating in and out of dreams. Clothes and blankets hurt. I have a large silk scarf toga, a light gauze sundress, and a flannel tank top that work ok as clothing. Any motion hurts, and any weight or something touching my left side hurts extra. It is hard to use the computer, or to sit upright for long. I can balance the laptop on blankets and pillows across my hips while lying down. But the phone is easier. I have laid here swiping through twitter and now Facebook (which I’ve never had on my phone before this), and idly reading news and the few blogs still active in my RSS feeds. I very much miss the feeling of blogging being outside of particular platforms! It is so good to see friends and chat with them and be distracted by the Internet and by books.

Books: the Bloody Jacky series (trashy fun, with Napoleonic era naval adventures and girls’ boarding school, combined!), and lined up for when I feel a bit better, Shadowshaper by Daniel José Older, and Marguerite Reed’s Archangel.

One thing that comforts me a lot in this state is to have a nicely arranged bedside table. It gives me a feeling of control over my environment. It is pretty to look at, satisfying somehow, and I can get many things I need without asking for help or getting up. I have flowers on it, my touch lamp torchiere (pointing up) which i really love being able to adjust to 3 levels of light, shea butter, coffee/tea mug, a giant chunk of green glass, my crystal cube holographic print of the entire universe, and my wooden letter rack that holdes all my devices sideways for recharging. It holds my 11 inch Macbook Air, a kindle, an external hard drive, my phone, and an external battery and sometimes also Danny’s mini iPad. That’s a lot of devices in a very neat, compact space!

Nightstand

Two big power strips are hung on the side of the nightstand. Over the power strips in the space between the bed and the nightstand, I now have a thing I bought off Amazon, called an “Urban Shelf”, an idea for a thing covering this space which I have tried to construct from junk several times and failed to implement. the Urban Shelf works very decently. Its slots for power cords have been helpful and now my million tangly cords are less in the way. Right now the urban shelf holds a kleenex box but it has also been good for my entire laptop, plates, etc.

I like being able to look over at the nicely arranged nightstand at the flowers and polished wooden surface. I polish it with lotion or oil. I like to turn on the lamp which glows gently through its own glass, the red glass of my bud vase and the green and universe glass. Past the flowers on the side of the narrow bookshelf I can see my little trading card that has Oracle on it at her computer. Secretly corny shrine to Oracle….. Maybe I will get an Instapainting oil on canvas version of Oracle surrounded by screens in her wheelchair. I find it so heartening – I can’t experess how it chirks me up to connect anything about my situation with a badass superhero mastermind.

Oracle screens

Here is my amazing instapainting of a scene from Journey to Babel that Danny got me for my birthday last month! I like to think it stands for my love of translation (and science fiction). Maybe I’ll move it from the living room to the bedroom, so I can gaze upon it from bed and laugh.

Journeytobabel

Inside the nightstand drawer I have many conveniences like earplugs, nail clippers, lidocaine cream and other lotions, usb sticks, clips, headphones, lip balm, bookmarks, hair ties, toothpicks, some medicine, pens, scissors, asthma inhaler. I would be so lost without this magic drawer full of junk! The cubby below the drawer in theory should have a selection of good books but right now it needs to be cleaned out since it’s so stuffed full of books you can’t really get use out of it.

Maybe if I have a limber and non dizzy moment I’ll clean out that cubby and stock it with only a few books good for bedside comfort, a drawing pad, crossword puzzle book, and maybe a couple of “to read” books lined up (instead of an enormous jumble).

Of other things to appreciate about my situation, once again the steroid burst means that I have almost ZERO allergies. This never happens except while traveling to new places or when I’m on steroids and for a few weeks after the steroid burst. It’s a small luxury to have my sinuses feel so light and not swollen and to not have to blow my nose all the time. Yesterday I sat on the front porch and pinched leaves off several potted plants (could only use my right hand, ugh) and did not get a giant sneeze attack or have to take actifed or benadryl.

It it comforting that I can get anything or help with nearly anything at whim from Instacart, Amazon, or Taskrabbit. (And I have been doing that.) Money and these sorts of services replace what otherwise would be me asking for a lot of help from family and friends and community and really, public services. (Which I am also getting at least the family/friends, but it’s lovely to have the money to just hire people, somehow). If I want flowers, or chocolate, or food, or someone to fix the dripping sink or whatever, I have only to fill out some forms and stick in my credit card. It is a great luxury. (That most disabled people do not have.)

It’s sketchy to react by always playing the “glad game” like Pollyanna or being a patient cheerful invalid like Katy in What Katy Did, but it also helps. Like, every time I get up to get myself some tea, I think how much I appreciate being able to do that and I take pleasure (and pride to some extent) in all of it, in the entire process of simply getting myself some tea. Walking across the house, maybe I can look outside on the front porch for a moment and have a look at the world. Whatever level of ability or function I’m at there is something to appreciate. This sounds a bit nauseating I know. But it is sincere.

I miss work a lot. For a few days earlier in the week I was reading and responding to urgent work email. Right now I feel too drugged, stunned and distracted by pain, and messed up in general. I am exhausted. If I can adapt to the drugs over the next few days maybe I can start working. But it seems more likely (depressingly) that I need more time out.

Some other coping strategies: Doing very short sets of easy physical therapy exercises, then setting a 5 minute alarm on my phone for a “power nap” where I close my eyes and breathe deeply. If that leads to a real nap, great. If not, I have rested and put down my books and phone or computer.

I have not found a good video game for distraction. I need something turn based or not-twitchy, and not stupid or full of ads. May play through Monument Valley for the 3rd time. I was going to try the new Master of Orion (since I remember loving the original one), and it looks nifty, but it was so much like actual work and has so much “executive function” that I lack right now, that I am not doing it. I still play Threes. (top score in the low 30K range) Nethack is nice but it’s too hard to hold up the computer. I play clash of clans (with my family in a clan) and dominations but am a little bored with both. I can recharge things for Ingress from bed, but am running out of power cubes. Not so fun when I can’t get out.

One bad thing which I will complain about, besides the skin pain and “shocks” and burning and allodynia, is that my left side feels wrong and strange. The muscles don’t work right along with the deep ache, and they spasm. I think that is maybe straining my other back muscles on that side. Sitting upright and walking and bending over feels hard and wrong. What if it stays that way…. If it does I will adapt. My ribs hurt and my guts in that stripe on the left around front and back, feel all wrong. It feels hard to use my left arm to reach or do anything since it uses some of those side muscles, I guess. Especially reaching upward or outward. The muscles in my low back just underneath the “stripe” are very sore and messed up. It is probably temporary as part of the shingles inflammation or infection of the nerve.

From looking at charts I think it may be T8 or T9. Hard to tell… Just below or at the edge of my ribs. To me, it seems wider than just one stripe, because it goes from my lower rib to my navel. Maybe it’s T9. Interesting to look at the nerve/dermatome charts, anyway!

I hope to be able to leave the house and go to my sister’s house this Sunday. If I can make it into a cab and up her stairs, I can lie on a splendid couch and Danny and I can see my son, my sister and my mom and nephew and brother in law and 3 cats and 9 chickens and Laura’s beautiful chaotic experimental garden. It’s Danny’s birthday today and my sister’s birthday tomorrow so I expect someone will be making cake and probably knowing my sister and brother in law, some sort of special fancy amazing hipster cake.

Peaceful day in the sun

February 6, 2011 Liz

I spent yesterday puttering around my houseboat and a good bit of the afternoon sitting up on the roof. After a month of illness, I’m finally breathing more normally. I’m also just (today) starting to eat real food. I lost about 15 lbs in the last two weeks, which wasn’t fun at all. Yesterday and today, it was incredibly good to spend time in the sun!

My hair is very bright! I switched dyes from Creative Image to Goldwell Elumen.

All around me as I looked out from the room, people were cleaning their boats, shaking out mats and sails and tarps, bailing their dinghies, having cook-outs on deck, and working on their cars and motorcycles. At high tide, we went up Smith Slough in the electric motorboat, which I love because it’s so quiet and peaceful. I didn’t dare go by myself. I took short naps and followed the news from Egypt. I can’t walk at a normal pace, and have to move very slowly or it’s like being stabbed in the stomach. Despite that, I have to get up and move around, alternating resting with attempts at activity. The kids read, made things with Legos and Zometools, watched Phineas and Ferb, played Peggle, and fished. At some point I also sat on the dock with a long-handled brush and scrubbed the outsides of the kayaks that were within easy reach; for a few minutes part of the general industry of the harbor.

Here is the fish that Oblomovka and his daughter caught. It’s a topsmelt silverside:

I had high tea today with my friend Gina for her birthday. Real food! Real caffeine! We talked about our lives, relationships, friends (hooray for gossip), work, school, teaching, and writing.

I have a bunch to say about books, work, life, death, illness, writing, publishing, social class, and politics — but for now would just like to post that I had a happy and relaxing weekend (despite being in a lot of pain). I’ve felt a bit hopeless and sad. Now things are looking up. I appreciate my family and friends a lot.

Wonderful world of asthma meds

January 19, 2011 Liz

Asthma and bronchitis have pretty much stopped me in my tracks for the last couple of weeks. I got sick very suddenly with a mild cold and low fever and could tell I was on my way to bronchitis. The air felt raw and suddenly I needed to do my rescue inhaler a few times a day. Normally, I just keep one around in my backpack and one in my car, and I don’t think I’ve used it more than once all of last year. So, I kept on doing as much of normal life as I could, worked from home, took Moomin to school and picked him up again, and put off all errands, groceries, and laundry.

Last Sunday I realized it was serious and I couldn’t stay in my boat – the air was too cold – even if I stayed in bed, it was too hard and painful to breathe. It turned out at the asthma doc’s that I was at something like 40% of my normal breathing capacity. That sucked. My sinuses have also been bleeding, my ears hurt, and I’m dizzy. For about a week, I couldn’t get enough air to really talk. Fun times! Now I’m holed up at Oblomovka’s warm apartment with a motherlode of asthma meds, feeling a little better, able to talk now, but wondering when the heck this will end.

Asthma meds have changed a bit since my last bad episodes. I was on prednisone for a week. It didn’t seem to help me as much as prednisone usually does when I have bronchitis. I am doing Symbicort, which is 160mcg of budesonide, 4.5mcg of formoterol; and in the nebulizer, .5mg of ipratropium bromide and 3mg albuterol. Unfortunately albuterol makes me feel shaky, queasy, speedy, panicky, and hideously emotional. Basically, if I do albuterol, I burst into tears a lot, my heart pounds, and I feel kind of irrational. But it’s what gets me breathing.

Albuterol is a bronchodilator and a short-acting beta 2 agonist. It relaxes the muscles around the bronchi and bronchioles, which are probably tight or spasming in an asthma attack. It’s the main “rescue” inhaler most people use when they have asthma, because it works very quickly. It doesn’t help reduce inflammation. Its effects wear off after a few hours.

Ipratroprium, which I’ve taken before under the name Atrovent, is an anticholinergic that works by interrupting nerve impulses to smooth muscle in the lungs. I find that it helps with the pain and tightness of asthma. It’s hard to tell which inhaler is doing what, of course.

Budenoside is a corticosteroid that, taken long-term, helps reduce inflammation in the bronchi. This is the important one that, in theory, will help kick me out of this horrible cycle.

Formoterol is a long-acting beta-2 agonist that should also help over a few weeks to relax the smooth muscle in my lungs or bronchioles or whatver. It lasts 12-24 hours.

So, I have nearly every kind of asthma med here. I don’t have mast cell stabllizer inhalers, or Singulair which is an anti-leukotrine drug… or leukotriene receptor antagonist now that I look up the proper term. For a few days I was also taking some hydrocodone cough syrup at night, which isn’t ideal for asthma but which helped me sleep without coughing and also helped with the pain in my chest, which was pretty bad.

Last week I ended up in the Urgent Care clinic at UCSF where my doctor sent me to get chest xrays. The xrays were okay, and the doctor there gave me some antibiotics and a corticosteroid nasal spray, on the theory that I also had a sinus infection, which was triggering the constant asthma. I’m not sure that he was right, but I can roll with a Z-pack and some fluticasone, why the hell not.

Air still feels like fire going in, and I’m still coughing if I try to walk around. I don’t like being on all this medication, and I’ve been out of work for almost 2 weeks. I’m happy to be on the mend.

While sick, I’ve been playing an online scrabble analogue called Words With Friends, beating nearly everyone. I’m “drlizardo” on there, if you want to get your ass kicked. It helps to keep my mind off of the pain and discomfort and anything that makes me think rationally is great — very helpful to avoid freaking out. I also read a bunch of books:

Imperial San Francisco by Grey Brechin. This is not very readable unless you’re a super-history-wonk. But it does tie together quite a lot of information about San Francisco and the military industrial complex of mining and empire. It mentions so many interesting things that it’s a great book to read with Wikipedia on hand. And it’s very scholarly with great footnotes & sources.

Gulag by Anne Applebaum. If you are sick in bed, warm and well fed, but still very miserable and whiny, reading about millions of people sent to freezing cold prison camps and gnawing on tiny hunks of moldy bread to survive is strangely cheering. I had no idea the Soviet prison camps were so huge, and so essential to the economy.

Priceless: The Myth of Fair Value by William Poundstone. This was a good quick read, a little bit fluffy, with descriptions of a lot of different experiments in economics and psychology. One of its central points was “anchoring” — if you are exposed to an initial “anchor” number, even if it has nothing to do with a following question in which you have to come up with a price or a number or evaluation of any kind, the anchor’s value will influence your answers. So the idea that someone, somewhere, might pay 2 million dollars for a jeweled handbag, makes people more willing to pay an unreasonably high price for some other piece of crap or car or whatever else.

I’m in the middle of The Net Delusion by Evgeny Morozov, Dark Sun by Richard Rhodes, and Among Others by Jo Walton. I’d like to write in detail soon about The Net Delusion, which I highly recommend!

Time for some soup and another nap. I see the doctor again on Friday. Cross your fingers for my lungs to get less inflamed and for me to develop magical patience with this bullshit, or to obtain my cyborg body very soon. Asthma can take anyone out, as can bronchitis. I feel extra overwhelmed as I *already* am on the edge of being able to deal with life, working pretty hard to cope with disability. This illness took me down hard. I don’t know how other people manage, honestly. I think the worst part is not being able to take care of my child very well. I’m very lucky to have an understanding workplace, good medical care, an incredibly helpful partner, and a lot of friends who bring me things and give me amazing emotional support.