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.

January 22, 2018


Already it's been an interesting year. On Jan 2nd I got an eviction threat from the building manager based on--I kid you not--removing an outdated piece of paper from the lobby. That started a quest to bring attention to the manager's pattern of bullying and threatening tenants. I'm working with a tenants' rights organization on that. I don't always want to be the squeaky wheel but I am good at it.

Then came last week. Tuesday I was so tired I stayed in bed most of the day, including when my Home Care person came to clean. (Yay, the state is paying someone to help me now!) In Wednesday's mail I was denied SSDI (insufficient evidence) and Enbrel (ditto). SSDI is better disability than I currently have, but to qualify I have to prove I was unable to work before age 22. Evidence from 19+ years ago is not easy to find. Enbrel is the new autoimmune med Rheumy wants me to try. Except it's for RA and I don't have RA. Rheumy and Nurse are appealing, which is quite a job. I love them.

Also Wed I discovered that someone had stolen my new wicking boxers from the mailroom. The night sweats are back and worse so I've been assembling tactical pajamas. I put up signs. The signs made me feel better.

I'm too tired to feel shame
Caption: I want my underpants back. Tuesday Amazon delivery. Blue boxers.
Won't fit you; I'm tiny. No questions asked.
Thursday my massage therapist was out sick, so I had a day to go splat and see a friend. Friday Nurse called about the Enbrel denial and I took a last minute trip into the office for a TB test. It's required before Enbrel can be approved and this way we're on top of it. I stopped into the records dept and signed a waiver to get copies of whatever SSDI-relevant stuff is in my chart from 1996-98. Fingers crossed there's anything at all. After all that I crashed.

Things are looking up because on Friday I'm heading to Hawaii for a week 😁 Warm and sunny sound perfect right now. There the air kissing your cheek smells like flowers.

PS: Amazon refunded my purchase and replacement boxers arrived today.
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