June 6, 2019

The simplicity of hard choices

I've been thinking about hard decisions. We often frame them as choices between right vs wrong or good vs bad. Even simpler than that is the question I ask myself: will I like who I am more or less based on what I decide?

My ex-husband was an abusive narcissist. I watched him make choice after choice to become that person. At first they were very small decisions, not even perceptible as good vs bad. At the end of two years, however, he was no longer recognizable as himself. I learned that every choice to sacrifice your ethics for convenience or selfishness compounds. A tiny compromise now becomes difficult or impossible to recover from when repeated enough times.

Today I had the opportunity to believe a friend or not. Faced with an uncomfortable fact, what do I do? I chose to set aside the ego I had in my own judgement and trust someone else's experience. I didn't need to know both sides of the issue because only one side mattered: my friend's. I know the power of being believed and having my experiences valued. Being able to do that for others is a gift.

October 21, 2018

42 and 25

October is a strange month in my life. Last week I turned 42 years old and the week before that marked 25 years since my constant headache started and I became chronically ill. I remember brief clips from that time: crying in pain while waiting for my mom to get home from work; listening to my mom unenrolling me from my community college class with tangled feelings of relief and failure; a kind nurse holding my sweaty hand while the doctor performed a lumbar puncture; thinking that surely I'd be better by Thanksgiving, by New Year's, by Senior year. I turned to hand work and old movies, which is when I started quilting and taught myself to knit. An inpatient headache clinic decreased and stabilized the pain enough that I could attend college part time with my friends.

I've been trying to write a second paragraph for days but can't find the right thing to say. As the autoimmune cognitive disfunction worsens it gets harder and harder for me to put thoughts into words. I've made the best life I can given the constraints and difficulties. Pain and illness have changed me in fundamental ways and have pushed me outside the mainstream. I don't have the career or romantic partnership that I assumed I would, nor do I have relatable experiences or anything resembling a normal life. But I'm usually happy and probably enjoy life more than the average person. Above all I try to love others and be kind.

Right now I'm going to be kind to myself and take a nap.

 I climbed a view tower yesterday in memory of an arthritis friend who passed away recently.

July 31, 2018

Caribbean Vacation! and hard news

I just returned from a week-long sailing vacation in the British Virgin Islands with family and friends who are now family. It was beyond expectations and words cannot convey the amazing time we all had. We snorkeled and talked and ate and played with the kids, and I jumped off the flybridge into moonlit water to swim with bioluminescence. Three times.




My energy level was amazing for most of the trip and I was one of the first into the water every chance. We saw so many fish, I practiced snorkel diving, and my body did so well! The tropics are a fabulous place for me to visit, but heat rash let me know that more northern climates are best long-term! The travel days, especially the flights, were exhausting and tremendously painful but I knew that going in.

The trip wasn't all positives, though. Seeing the scale of hurricane damage up close proved the consequences of how greatly humanity is changing the climate. My cousin and her young family were on the trip; her husband was our captain. The last full day we learned that their home in Redding, Ca, was destroyed by the Carr Fire. There were some tears shed and shock all around, but also tremendous gratitude that they didn't live through that nightmare. They're now making big decisions about their future on an increasingly risky planet.

June 2, 2018

Here's to not failing!

I've been feeling better--spontaneous partial remission if you're fancy--and have been taking full advantage of that. I started a tenants union in my building, which has been scary and daunting and lots of work. But also very rewarding. I realized tonight that I had a realistic expectation of failure. But instead of petering out due to my poor health and neighbors' lack of interest, it's actually happening!

A local news article about the Seattle Housing Authority's shady evictions has brought some positive attention. There's a huge conversation about housing in Seattle right now. I think we may be able to create meaningful change, including among the poorest and most vulnerable tenants. It feels really good to have a job again.


March 24, 2018

Never a dull moment; or I am Summer's flooded apartment

Life continues to be interesting, with my apartment flooding yesterday and more water issues today. Plus some Ella news. With a health update at the end.

Yesterday morning: minor flooding in my bathroom, kitchen, bedroom closet. No leak found, water vacuumed.

Yesterday afternoon: more flooding in bathroom, living room, bedroom, kitchen. Mass furniture migration. Kitchen wall opened, leak found, leak patched overnight. More water vacuumed.

Lake Living Room
This morning: ceiling rain in the shower, drain pipe repair, snow, hysterical laughter.
This didn't inspire confidence
The shower's drop ceiling was leaky last night and the sheetrock had some give. This morning it was positively squishy. I poked holes and voila streams of water.

Ella didn't approve 
By noon today: the drain pipe, perforated by aggressive snaking Thurs morning, was repaired. Temporary plastic was applied.
New shower ceiling
One of a kind kitchen
The point when I broke:

11:09 am
There's water damage to more walls in the bathroom, which maintenance will fix next week. I don't know how extensive the repairs will be. I am not confident that one day will be enough.

The good news: the floors are fine, just dirty. No furniture was damaged. The apartment is livable. The sun came out in the afternoon. And I have the weekend to rest.


Ella: Ella saw the vet Tuesday for an exam. She's almost 13yo so they ran blood work and the vet called Wednesday with the news that she has chronic kidney disease. Monday I take her back to check blood pressure and talk dietary management options. They were quite charmed by Ella, and shocked that she'd been a feral kitten, so that at least made me feel good.


Health update: insurance approved Enbrel in late Jan, I took three doses in Feb, but had such a bad reaction to it that I had to quit. It increased fatigue, cognitive issues, and joint pain, caused dizziness, hot and cold flashes, and overall made me feel awful.

I saw my rheumatologist two weeks ago. I'm to recover from Enbrel and start triple drug therapy (Plaquenil, methotrexate, and sulfasalazine). We'll talk next steps in two months.

I started weekly acupuncture in January, and that helped with temperature issues in spite of Enbrel. The goal is to help balance my body systems, and now that I'm recovering from Enbrel I am optimistic that acupuncture's benefits will be more noticeable. It makes for a busier week, though.
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