2017 Turdnado

Hello from this last day of 2017. My brain is doing the fun thing of reflecting on all the disappointments of the past year. There were some positive moments, for sure, but generally it was a downhill slog. The thing I feared happened: most of the gains I'd worked for evaporated as my health deteriorated. Plus our collective psyche has been damaged by the toxic political climate, hitting all of us in very personal ways.

I try not to focus on the strength that allowed me to persevere. It's a mixed blessing, and one that makes me appear more independent and less alone than I am. The losses of this year hit me hard--lost health, lost friendships, lost long-term relationship--and adding them to my life-long grief list doesn't feel good at all. I'm not sorry to be alive and sane, don't get me wrong, but life is still tremendously difficult.

Practicing good self care helped, though. I finished and wore the Water breakup shawl last week: it's very soft and cozy. I'm unabashedly my own weird self. And friends online and in person are the joy in my life.

Water posed on my Christmas tree

Top left: April's Peepicide; Top right: brownies for Sweetie

Bottom left: Xmas tree; Bottom right: my new hat!

Instead of looking back I'm focusing on Jan 5th's Awesome Rheumy appt. The thought of her examining my hands makes me want to cry, but at least my symptoms are visible? I have no idea what the next step will be. Brain in a jar is sounding pretty good right now but she probably has a couple ideas before we take that step ;) Being able to walk, think, sleep soundly, and socialize are my giant unspoken goals.

If this post sounds conflicted...well that's because I am! Teetering between optimism and realism, trying to hope for the best while bracing for the worst, living in the moment unless that moment is miserable in which case distract-distract-distract, and questioning the meaning of it all: that's me summed up in one terrible run-on sentence.

May we all have a better 2018. May love win.

December catch-up

Ok. It's been a busy couple months for all my usual reasons. In November I caught a nasty cold. After two weeks that morphed into a persistent cough and a sinus infection lasting another week plus. But I'm recovered! finally Now it's just my own immune system kicking my butt, which I'm actively not thinking about until Jan.

I returned to the pain clinic in Nov as well, the one that cold turkeyed me off morphine in 2013 thus trashing my hypothalamic-pituitary-adrenal axis. This time I got two new meds that didn't help and made me miserable. I won't be going back there! Hopefully the resulting night sweats decrease enough that I can stop changing pjs nightly and leave the towel in the bathroom.

In early December I visited a friend in Centralia for a long weekend. We had a lot of fun and it was a perfect break :) I was able to drive down, too, which was fantastic!

This year I put up my first-ever Christmas tree and it's very cheery. We all need a sign of hope this year so I knit a pussyhat for top. And since I'm an internet dork, a glittery teal dear decorates the base. Ella, remarkably, has shown zero interest in all of this.

In knitting news, I knit this winter's #resist hat. It worked up fast in worsted wt yarn.

Knit hat with "feminist killjoy" in rainbow letters.

And more ornaments, taking advantage of the 8 days each year that I'm motivated to knit such things ;)

It's been a hard year but it was filled with love. May you all feel cherished this winter.

A kinder, gentler October

After a rugged September I'm relieved that October has started off well. I now have home care (cleaning, chore help, etc) covered by my insurance, provided by an awesome lady in my building. She wants to learn to knit so I may make a new friend as well :)

My local best friend is moving into the city--today in fact! We get up to the best shenanigans and I know she'll be much happier not living far away from all the fun things.

I saw my rheumatologist yesterday and she's doubling my immunosuppressant dose. After a month we'll know whether it's helping or not, and if not we'll switch to a new biologic. Heading into Thanksgiving and the winter holidays with a plan that's not "watch and wait for months and months" will help my mood.

I'm still working on recovering from the breakup. My clever plan to find community was abandoned after hitting the wall that is my body's limitations. Once again I was reminded that I'm doing my best. Instead I've been taking long naps and staying engaged with friends online.

Ella helps model my latest knitting project

Another one bites the dust

I am once again a single woman. After stringing me along for months and lying about his feelings and intentions, finally on Friday Sweetie just...let go. He was not stronger than his fears, especially when he started believing the lies depression told him. I'm still in shock but friends have had many kind words and that helps a lot.

Cat litter calls: feel free to admire my breakup yarn while you wait.

I forget how weak many people are and how scared they are of love. Love is the reason I get up in the morning. It's what gives my life meaning and joy. Love makes my heart sing even when tears are falling.

I realize I cannot rely on the fickle nature of romantic attachments for my future. What I truly long for is community and family. There have to be local families who would love an honorary aunt. To that end I'm going to start attending a community church on Sunday evenings. It's a bit of a trek and previously had conflicted with my support group meetings then softball spectating (ugh!). But now is the time. Maybe this is an unattainable goal but all my goals seem out of reach so why not aim for the stars?

Eclipse!

My Sweetie and I took an eclipse road trip and it was AMAZING! We make a great team with superb catering* and really enjoyed having two solid days together. The drive down was mostly easy peasy if long, with a nice break to visit a friend in Centralia, WA. We stayed in Corvallis, OR, in the backyard of someone from my online knitting group.

Sunset Aug 20th, just south of Portland

The six of us hung out in the back yard Monday morning watching the eclipse and playing with shadows. As the eclipse progressed it gradually got cooler, the light got strange and dim but still directly overhead, and it was unlike anything else. Totality was incredible and unique and felt too short. As the eclipse ended it seemed like early morning as the light and temperature increased. And then it was a normal summer day. 

After the eclipse we poked around Corvallis a little, napped in a hammock, fed ganache to our hostess' daughter, then packed up and headed home. It was perfect. My body cooperated pretty well and I felt like I had a break from being sick for a day.**

Sweetie and I stare at the sun just before totality.

You can't see anything through eclipse glasses so be extra impressed by this selfie.

What my phone saw during totality

Leafy shadows acting as cameras obscura

Afterward I got a little silly with a nibbled leaf-turned-pinhole camera.

Driving home was not as fun. I navigated us on side roads to avoid the awful I-5 traffic until north of Vancouver. Then it was a long slow slog for 130 miles until past Tacoma. It was fully nighttime so Sweetie napped in the back seat while I drove much of that. I'd brought a quilt and pillow and made a nest for him. My self care techniques are appreciated by healthy people too :)

I'd cleverly placed the stereo aux cable out of driver's reach so couldn't connect my phone for driving music. Instead I played "how long until the Subaru notices its headlights aren't on?" (40mi). And quietly sang whatever song came into my head. And talked to traffic and other drivers. And cruised through the radio stations a few times. Finally I pulled out my phone and played music with it sitting in my lap. You know you've found your match when he thinks all the above are adorable.

We got back to Seattle at 2:30am and quickly fell into our respective beds. Yesterday I had a rest day. And now we're firmly back to normal life, albeit with a reminder of how magical and surprising life can be.


* Black bean burritos with chili-lime-cilantro brown rice, banh mi with spicy sausage and homemade pickled vegetables, strawberries, plums, lychee, cold brew coffee, and dark chocolate ganache.

** YAYYYYY!!!!!!!!!!

Rheumatology update

Awesome Rheumy is back and I had an extremely positive appointment with her in July! She had some questions for my hematologist before prescribing new meds. So I waited, and waited, and got tired of waiting and ran around kicking butts into gear, then waited more. Did you know it's almost impossible for two specialists to actually talk to each other?

In late July I was once again hit with the dizzy stick plus some other neuro symptoms. Poor memory is among them so I don't have a symptom list. AR was told and squeezed me in for a visit two days later. At that appt she prescribed Imuran/azathioprine, an immunosuppressant also used after kidney transplants to prevent rejection. Hallelujah!

I officially have systemic lupus now, which should ease treatment hurdles in future. SLE carries much more weight than Undifferentiated Connective Tissue Disease. The azathioprine is treating me very well so far, no increase in nausea, and I've titrated up to the full dose.

My emotions have been all over the place since June but finally seem to have leveled off. It feels great to have a doc who has the ability and desire to diagnose and treat me. She believes we can achieve remission, that it's a matter of time and finding the right meds. And my neurological issues will resolve as the level of inflammation in my body is reduced. 😁

Let's get probiotic; or I am Summer's microbiome

Last month I took a free uBiome gut microbiome test and learned that I had basically zero probiotic bacteria. So I've started eating yogurt. The new fancy Greek yogurts are quite tasty, not at all like the runny gritty yogurt of my youth. I like to buy unflavored versions and add unsweetened apricot preserves* and granola.

The first crop: Smári, Noosa and Fage

Smari was up first. It had an aggressive yogurty tang and no sweetness at all. It would pair nicely with sweet jam but I added honey. I'll keep this in mind for days when my tongue craves lactic acid.

Second was Noosa. Noosa is tangy and rich but not too sweet, and great for breakfast or lunch. I loved its thick texture and honey sweetness. It has a high fat content which stops it from being my daily choice.

Fage didn't impress me. It was very thick, tangy, and unsweetened, yet lacked the mouth feel of full fat yogurt. It mixed well with apricot and granola but I wouldn't eat it alone. I'll consider trying the 2% fat version, in part because Fage is easy to find.

And last came Ellenos. I was powerless to resist: sweet, creamy, not heavy, and there's a passion fruit flavor. Ellenos is delicious but with no yogurt tang it's like eating dessert. I tried eating it for breakfast and confused my brain and stomach no end. 

Welcome to the Cult of Ellenos

Conclusion: I'll keep looking for a daily yogurt. Now that I know yogurt and I get along I'll try brands available in large tubs. I've learned to keep an eye on the fat and sugar content. And I know the difference in flavor between different yogurt-making traditions.

Ellenos will remain my dessert or afternoon snack yogurt.

* I have a couple jars left from 2012's batch, back in healthier days.

One more thing x 10²³

I saw my PCP yesterday for a physical. She noticed a heart murmur, one that definitely wasn't there during a cardiac workup in 2014. So it's back to radiology for another echocardiogram which at least is a cool and painless test. I'm super glad to be seeing Awesome Rheumy in 9 days (yep, I'm counting) rather than continuing to free fall without a rheumatologist or treatment.

I spent much of the last two days emotionally confused. Heart damage is not good, even a just a little bit. But this feels like a solidly Real Symptom that may help with an SLE diagnosis. And that would lead to greater treatment options, including clinical trials if I run out of new meds to try. Evidence that my borked immune system is winning is still tough to handle. But chronic illness has honed my ability to quickly adapt and accept, and that I have!

Sunday was a gorgeous hot day, the kind we rarely get and even more rarely can truly enjoy. My mom and I went to Mt Rainier and gawked at the views. I totally crashed on the way back and slept in the back seat. But seizing the day was worth it!

Knitting update: Morvarch is done!

In April I finished Morvarch, the great green cabled shawl started on Jan 1st. I am so happy with it! I've worn it a couple times, my mom wore it once, and it luxuriates atop a bookcase in between airings. I greatly enjoyed knitting the cables but the stockinette seemed endless.

I don't have the energy for real photo shoots so I'll just have to hope these pictures do it justice :)

Morvarch's length matches my wingspan: perfect!

Just the cables, ma'am.
With bonus butt in my new favorite jeans.

This accurately captures its actual color

The high price of subsidized housing

I started writing this post in Oct 2015 but left it unfinished because this topic makes me angry and depressed. But in the last month Screamypants (my next door neighbor) feloniously assaulted her own guest, my moth war proved to be hopeless, and someone took a heroin withdrawal shit in the elevator.

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You cannot understand the transaction until you've lived it but let me try to explain: subsidized housing is easy on the checkbook but takes a big bite out of your pride. I am willing to give up dignity for happiness, ready to sacrifice my ego to create a partnership of love and caring. But I resent paying what can feel like a piece of my soul to rent a crummy apartment that was designed, built and maintained on the cheap by people who largely don't care.

Subsidized housing is the Hav a Heart trap for humans. First you hand over bank statements, have your income checked by IRS, bring your Social Security card and photo ID, and spend an hour signing a tall stack of forms that equate to "don't eat lead paint" and "don't set the building on fire." You think you're getting everything you need: a sturdy box, food, your own space. Later you realize it's a metal cage and the out-of-date tuna doesn't smell quite right. But by that time you're stuck living what can be a nightmare in theoretically normal housing.

From the outside my life probably seems fine. The victim blaming voice in my head even suggests that it's partly my fault for making this look too easy. My options are slim, being unable to work and living on $735/mo disability. Without my disability I could work, without my disability I could drive, without my disability I wouldn't need quick access to Seattle's medical centers. But with my disability I am poor and practically invisible.

I feel affinity for this quote about raccoons. "Their willingness to persist on our leftovers while living in marginal habitats makes them very common."

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Fun fact: while I've been writing this two Very Loud Women have been hollering at a third woman in the parking lot outside, at 1:30am. Third woman took a building resident's parking spot. The building resident parked their van behind her. And the two others are trying to Very Loudly direct her out of the spot. Third woman is a poor driver and terrible at geometry, however, so this has carried on for at least 15min and she's no closer to being free. I wish I had a hose to turn on them.

Rollercoaster March, or I am Summer's Continuing Search for Diagnosis and Treatment

In early March I had cognitive testing. The results came back and even my "performances with incontinence remain within normal limits." I used to be extraordinary*, now I'm mostly above average and sane and coping with executive function difficulties. That's my takeaway anyway.

In early April I saw my current rheumatologist (nicknamed Baby Rheumy, she's only been practicing since Sept). She can't diagnose or treat me based on my test results so I'm up shit creek without a paddle. I've exhausted the seronegative rheumatology options my insurance covers, which doesn't make me feel as special as you may think.

This week I saw my PCP to say "please help." This wasn't the first time we'd had that conversation. Turns out Awesome Rheumy (my former rheum) is back in the office very part time after an extended health-related absence. So we messaged her to say how much I'd like to see her again. "Help me Awesome Rheumy, you're my only hope" is how I'd have put it; PCP was more eloquent and less desperate. AR is the doc who gave weight to my symptoms, connected the dots, gave me diagnosis, and started helpful treatment.

And now I wait. Awesome Rheumy's nurse will call to schedule an appt...at some point. I hope. We had a great working relationship and I have no other options, plus she enjoyed the puzzle that is me. I'd cross my fingers if not for the cat snuggling on my arms.

*"An estimated high average to superior level of premorbid functioning"

Cleaning while chronically ill

Something you don't think about when entering the Kingdom of the Sick is cleanliness. You don't ponder how to scrub the toilet or vacuum under the couch until your body always wants to sleep and your hands are glowing with pain. You don't mind the dust until you are powerless to remove it.

Usually people enter my home and say "it looks clean" or some variation thereon. Which is true but can imply judgement: why are you asking for help when your home is cleaner than mine? They don't see the dust that accumulates under and behind everything. They can't understand my panic at clothing moths entering from other apartments and trying to nest in my woolens. Or that cat vomit is dried to the floor under my bed because I can't reach it.

I like my apartment. It's well located, my unit is bright and spacious, I can afford the rent. But the building is dirty. The ventilation system has likely never been cleaned so dust and grit are blown everywhere. Neighbors have pests which infiltrate my home. The shower caulking mildewed and maintenance's solution was to apply clear caulk over that. Dirt has accumulated in every crack. And I'm powerless to change this.

I struggle to accept this reality but I cannot consistently do so. I've had help cleaning but it's impossible to ask someone to clean what they can't see. And I'm the only one who takes a more than cursory glance at my home. I will never solve the clothing moth problem while I live in this building. For someone whose medium is wool that is a painful fact.

Grief, Acceptance, and Deja Vu

I haven't written in a while. Expressing coherent thoughts has been very difficult the last three months. And I've been going through the same freaking grief cycle yet again. I get sicker, I lose parts of my life, I can't accept it but have to live with it. Rinse and repeat.

Making gains means any subsequent loss has already been processed, right? Hahaha, no. It's more grief, this time with the fun twist of knowing what the future holds.

I'm getting too dizzy to continue so I'll sign off. Life feels exhausting right now. Maybe by morning I'll forget how far removed this is from the norm. Denial is a big coping skill.

Refractory disease

I'm all but diagnosed with treatment-resistant CNS lupus. Next week we will mine my brain to determine how great the impact is, then begin an immunosuppressant medication. The super targeted approach has failed and it's time for bigger guns.

I'm so used to accepting my reality as normal that I forget how abnormal this all is. I've become isolated by higher fatigue and the frequent inability to drive. But I don't know how to talk about the fact that this disease is winning, especially as I work so hard to hold things together. I don't want to live the rest of my life jumping from medication to medication as they all fail in turn. Yet I don't see another option.

In the meantime, I'll keep knitting. I cast on Morvarch Jan 1st and have been diligently knitting since then. The interesting bits are mostly done, now it's a long stockinette march to the end.

The yarn is "Emerald City" by Hazel Knits, it looks like evergreen trees :)

Unafraid

My goal for 2017 is to be unafraid. Despite politics, despite attacks on healthcare that directly threaten people I love, despite my own health issues. I know I will survive because that's what I do. I choose to face the future, unflinching and unafraid. That's how I can honor Dr King's legacy.