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 Later you realize it's a metal cage and the out-of-date tuna doesn't smell quite right.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.

April 15, 2017

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"

April 14, 2017

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.

March 12, 2017

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.

February 22, 2017

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 :)

January 16, 2017

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.


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