August 14, 2017

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. 😁

July 6, 2017

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.

June 27, 2017

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!



June 18, 2017

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

April 18, 2017

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.
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