A new review of Field Guide, Another Step on the MS Journey, and Fall Approaching with Poetry Discouragement

New Review of Field Guide to the End of the World

Thank to to Poets and Artists and Rita Maria Martinez for this new review of Field Guide to the End of the World. It cheered me up during a tough week.

Another Step on the MS Journey

I saw a much better doctor at the Evergreen MS Center yesterday who did a longer exam and answered many of my questions. She explained why my case was probably too complicated for her, boo, because I liked her, so she’s sending me along to the larger UW MS center’s director and maybe they will send me along to a bigger research center after that. She wants a larger research umbrella for me, she said. She thinks I may have MS plus something else causing some of the symptoms. We’ll get another step closer to a firm diagnosis after doing an evoked potentials test, which will be my next step along with an eye exam and meeting with a new gastroenterologist. She said that was probably the last step before an official MS diagnosis – no spinal tap, yay. She was very empathetic and asked lots of questions, explaining things along the way. (Like, my midsection has gone numb along with having the stomach trouble – which could indicate spinal issues even though I don’t have visible spinal lesions yet.) She also thinks my b12 problems – besides kind of masking the bigger issues for years – might be a symptom of another autoimmune issue that’s using up the b12 stores. Interesting! I keep reading books on this stuff but MS is complicated. She is putting me on steroids (hello, hunger, energy and insomnia) for a short term to see if they help. She’s worried that the 14 approved MS treatments are all going to be problematic for someone with liver tumors, a bleeding disorder and a primary immune deficiency, so a little worry about that, though I guess we’ll cross that bridge with the next set of doctors. She said that MS will eventually be one of my diagnoses, and she was sorry because it would be expensive to get long-term care. I laughed and that, and told her last year I’d been diagnosed with terminal cancer, and I thought that was probably much worse for getting long-term care insurance!

Fall Approaching, and Poetry Anxiety

Last night I had an anxiety dream about Trump taking away my health care – literally coming up to me in person and taking away my prescriptions – and another dream in which I was told I’d never be a famous poet like “blank.” (A specific poet I admire.) I know it was just anxiety dreams, but sometimes I do worry that I’ll never really achieve anything in the poetry world and that my kind of poetry will never get me fellowships, recognition, awards – the stuff that’s not supposed to matter, but still sort of does. And especially if I can’t travel or have to take time off for health stuff periodically, or I can’t make it to every AWP – it just feels tough. For a while this last couple of months I couldn’t write – which was really depressing – or even read. And I realize you can’t really take those things for granted, not with MS, or maybe anyone, ever. You feel like you have all the time in the world, and then you’re like…well, maybe it’s limited. Maybe my time to do the things I want is limited. I can see my life getting smaller – being in a wheelchair for the past two months again has reminded me how NOT handicapped friendly most of the world is. Even in liberal and wealthy Seattle, it’s like half the city hadn’t been built with ADA specifications in mind – and I have a six-foot-two 250 pound man to help me when I get stuck with my walker or wheelchair by a curb or stairs or a non-automatic door, most people don’t.

: ships at Carillon Point

: Kirkland late roses

: Glenn with Sylvia

: New haircut (finally feeling human!)

The weather has gotten mercifully cooler, and the air cleaner, finally devoid of smoke, and the weather report is calling for rain and highs in the sixties. I can feel my body sighing with relief. I managed to get out of the house today and for the first time in two months (!!) get my darn hair cut – it’s still hard for me not to get really dizzy and nauseous when I’m out, but it was worth it to feel like I was doing something normal and human again. I took some pictures of pink roses still in bloom late and these pirate-type boats at Carillon Point while I was out. And I start medication tomorrow that will hopefully help with the dizziness, numbness, stomach problems, and leg weakness – maybe even the minor motor skills that I really want to get back (hello, handwriting and eyeliner possibility!) I know the fall usually makes me feel more hopeful about writing – all the journals and publishers opening back up, all the readings and book launches. I’ve just really been struggling with doubt about my poetry path as well as this diagnosis, which is definitely a challenge even compared to all the other weird diagnoses I’ve had in my 44 years. I’m feeling a little down on my luck, a little discouraged not only with my body’s multiplying problems but my writing path. I am hoping things get a little easier – rewards, even small ones, might manifest, that my body responds well to treatment and lets me start doing “normal” things again – at least a little socializing. This is really the third month of enforced alone-time and rest, and I’ll admit to growing restless in my confinement. I hope soon I’ll have better news to report. Good luck to all of you in September!

Disappointing Doctors, Villains, Notre Dame Review, and Looking for Fall

Hello my friends!

Notre Dame Review and a new poem

First of all, thanks so much to Notre Dame Review – I was so happy to get this acceptance after at least fifteen years of submitting – I received my Fall 2017 contributor’s copy the other day, including my poem “On Being Told You’re Going to Die, But Not Quite Believing It.” Here’s the poem and Sylvia posing with the Fall 2017 issue.

Villains and Disability

And thank you to Kelly Davio for her “reading loop” about disability and villains in pop culture, which features one of my poems 🙂 It’s also just fascinating to think about how the disabled body is often presented in movies and comics.

A Report on How I’m Doing, and Wishing for Fall

I’m sorry to report I’m not doing any better yet, especially after I had so many hopes for my appointment at the Swedish MS Center last week. The doctor was either extremely unknowledgeable or extremely uncaring (literally answering almost every question with a shrug or an “I Don’t know” – even for things that he definitely should have known something about as merely a practicing doctor, not to mention a neurologist )- or possibly both, and left me with no new information, no help for any of my problems, and a lot of frustration. (It was so bad I actually called back the office to complain, which I have literally never done before. They got me another appointment with a different doctor, but not til December. December!) If you remember my cancer stuff last year, you might remember I had a similar appointment with a “top” oncologist at UW, so I guess this is par for the course – you can never rely on the first doctor you see after a hospitalization, I guess. So I’m still unable to eat or walk much, mostly stuck inside, and frustrated by my lack of getting better. So many sweet friends have offered support, which I really appreciate, and at least my reading ability – which was knocked out by vertigo for a while – has some back, so I finished up work on a book review and my newest book manuscript draft and sent it in to a third publisher. (If any of you publishers are interested in a book about being diagnosed with terminal cancer and then MS, but you know, with a funny spin, please let me know. I could really use the pick-me-up!) The dizziness has improved with home therapy exercises but the nausea and gastroparesis stuff persists, unfortunately, along with the weird leg weakness and some other weird symptoms. I’m sorry I can’t report dramatic improvement yet, but then again, I’ve started no new treatments thanks to deadbeat doc neurologist #1, so…I guess it would be overly optimistic to hope this goes away on its own. But you can send good thoughts my way if you want, I feel so bad for my poor husband who has been taking care of me since a month before the hospitalization, just to watch me becoming increasingly sick and weak – I don’t like it, I wish he didn’t have to watch it either.

We have wildfires on all sides of us right now and they’re predicting weather in the nineties today and tomorrow. MS flares happen more often in the heat, so maybe things will settle down when our weather changes, at least I hope so. I’ve always liked the fall but never really craved it the way I have this year, this year of record-breaking heat and scorched earth and fires in the usually mild Northwest. Looking at the news – wildfires down the coast in California, Houston’s flooding, North Korea’s nuclear warheads – isn’t particularly hope-inspiring right now, is it? I’m hoping for something better for me, for the weather, for the world, soon. I think we could all use a break.

Still Summer, Still Struggling, MS Center Tomorrow

Hey guys, thank you so much for your support, which means so much in these long hot mean days of summer, which just keeps holding on, it seems. Just this week, I received a vase full of pink flowers from some of my speculative writer friends (thanks Nancy, Kelly, Lesley, Molly, Sally!), some really beautiful get-well-soon cards from various friends, an offer to visit which I hope to take on soon from one poet. I’ve ordered (on orders from occupational and physical therapists) a rollator/walker thing in pink, a pink travel chair, some “cooling” accessories, books on MS…a lot of fun shopping, you can tell. Apparently MS hits you harder when you get hot, so traveling with ice packs is a must, especially on these weird late summer hazy 90’s days we’ve been having. I’ve never been so ready for fall in my entire life!

I’m due at the MS Center tomorrow for my grand rounds and intake and such, and hoping against all hope I walk out with a decent treatment plan, so I don’t feel like vomiting round the clock, and maybe my legs will start working again, etc. Please think good thoughts for me tomorrow starting at 3:30 PM.

I’ve been asked how I’m doing, so I’ll be frank – everything still sort of sucks, as you might imagine as I’m only on symptom control as of today, and really it’s been hard not being able to speak easily, swallow pills easily, remember things, dropping stuff, and oh yeah, remembering I might throw up or fall at random times and staying on some absolute knock out pills for the nausea and dizziness round the clock. I haven’t been able to put on any weight yet. I don’t really feel better yet. I’m hoping that’ll change as of tomorrow.

I did start being able to read in teeny doses – otherwise I’ve been on a steady diet of TCM and HGTV to entertain myself, while everything else does weird stuff to my eyes to make me dizzy. It’s hard to type, (SO CLUMSY!) but here I wanted to show up for a quick update while I was up for it.

I’m also going to beg my Science Fiction Poetry Association Friends to please vote for Field Guide to the End of the World for the Elgin Awards – votes are due for members September 15! Here’s the link: https://docs.google.com/forms/d/e/1FAIpQLScC4YJ4eDbRAXqpEMPcEpIsrqPl19k_fjQtFG_J7-c5OZj2ZA/viewform?c=0&w=1

There are a lot of great books and chapbooks up this year, including many by friends like Nancy Hightower, Margaret Rhee, Jessie Carty! And I think we could all use a pick me up. It’s been a rough year for a lot of us.

I hope to have some good (or at least better news) next time I post. In the meantime, send me your positive vibes! I hope fall gets here soon for all of us. (And of course, prayers for my Texas friends!)

Some Time in the Hospital, a New Diagnosis, and a Tor.com shout for Field Guide to the End of the World

First of all, thanks to Abby Murray and Lish McBride for writing up Field Guide to the End of the World for this feature on Tor.com! This was a bright spot in an otherwise challenging week

I spent the last three days admitted into a hospital – after a week of repeated trips to the ER, collapsing with dehydration and fainting and cyclical vomiting – hooked up to IVs, getting lots of MRIs (three!) and giving lots of blood. Before that, I’ve had over a month of very strange symptoms – dizziness, nausea, vomiting, inability to keep down food, and strange heavy feeling in my lower legs, with wobbliness and my knees giving out. At the hospital I had a neurologist specialist work me up along with the hospitalist (along with, among others, a nutritionist, an occupational therapist, and a physical therapist.) It should be said here vomiting is one of my most hated things in life and the other is being hooked up to a damn IV. Even at a very nice hospital with private rooms and big televisions and pretty surroundings, like Swedish Issaquah, no one loves being in the hospital.

Several different radiologists and neurologists have decided my symptoms, combined with a rather devastating new MRI of my brain, mean I have probable MS. This has qualified me to be worked up at the best MS Center in Seattle with one of their top doctors. (If these doctors hadn’t interceded for me, there’s almost no way I would have made it in with their doc within two weeks notice.)

A Year After I Received a Terminal Cancer Diagnosis, I’ve Received a Positive MS Diagnosis.

A year and a half after I received a terminal cancer diagnosis at an ER in Redmond, I’ve discovered that my neural lesions, which had been watched for over five years and stayed pretty static, had changed, grown, spread, and generally developed a pattern that looked a lot to the neurologist and radiologist like MS. (The medical terminology is “McDonald’s criteria.”) Because I cannot have a spinal tap – the usual way to get a diagnosis – my diagnosis has been slow to come, even as I developed more lesions and more symptoms. This latest weirdness has been termed an official “MS flare,” which typically last thirty days and bring lots of symptoms on to the unwary MS sufferer.

MS is not as scary a diagnosis as terminal cancer, and MS is treatable – though we don’t know yet what kind of treatment will work for me. Currently I’m on a giant cocktail of meds to get me through the time when the MS specialists will decide what the best treatment for me is (because of my other health conditions, they didn’t want to do the usual throw a huge dose of steroids treatment at me. Though I might have welcomed it!) My brother came to visit me in the hospital, and my parents flew out to Ohio to help Glenn as right now I am termed a “fall risk” and can’t be left alone even if I wanted to be. Getting out of a chair or taking a shower have become huge difficult challenges for me all of a sudden.

Anyway, it’s been more than a month since I could focus on being a friend, a writer, or even a decent human being, so I apologize – – but just trying to survive the constant vomiting – along with a huge decrease in my ability to walk or even stand unaided – has been a real bear. I hope that the new cocktail of drugs will work until they can get me under a more stable treatment plan. Think good thoughts for me as I am dealing with a new reality. I said to a friend that MS wouldn’t even be the scariest thing – or the thing most likely to lead to be death – that I’ve been diagnosed with. But it is still a challenge as I learn the new reality of my body, which constantly morphs. Like Buffy, you learn to defend yourself against one monster one week, and the next week, another pops up and you start all over again,

BookRiot and Poets for People Who Don’t Like Poetry, plus ER trips and Smoke on the water

First, thanks to BookRiot and Carolina Ciucci for including me on this list of “Poetry for People who Don’t Like Poetry.” Very good company there! Share if you like the article.

Second, I’m sorry if I haven’t been on top of things – I’ve been sick – several trips to the hospital and different doctors kind of sick, where I can’t stop getting – well – no graphics here, but let’s just say I’m having trouble keeping down anything but liquids, and sometimes not even those. They can’t figure out what’s wrong though my white blood cell count is sky-high and other inflammatory factors, they’ve misdiagnosed me twice already and given me a bunch of meds that didn’t help, so I’m a little frustrated (and tired, and having a hard time staying hydrated or doing anything but sleep with all the anti-nausea drugs. Oof.) This has been a month so far, with no relief. Boo. I have things on hold – haven’t been writing and sending out as much, so forgive me if I have been slow to respond.

Also in the weird zone, the British Columbia fires – 500 miles from us – have covered Seattle and the whole state of Washington in smoke, and this along with a bizarre hot/dry streak have left us kind of living in an apocalypse zone, right when most of us would like to be spending time outdoors, the air is literally too unhealthy – not just for asthmatics, for everyone! Now everyone is wishing for rain and wind and lower temperatures. I can look over the valley from my deck, and a weird thick haze hangs over everything. The moon was weirdly orange last night, baleful even.

Sweeptpeas and lavender running wild in my garden

Here’s a quick clip of my garden in bloom. It doesn’t seem to be bothered either by the smoke or my illness, nor do the hummingbirds and stellar jays and flickers. We saw a coyote on our street the night we went to the hospital, and I saw this when I went out to water the garden yesterday – a tiny bunny eating the leaves off my dahlia!