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

Denied

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.

December 31, 2017

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 20, 2017

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.

October 7, 2017

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

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