tag:blogger.com,1999:blog-76337728417014526332024-02-02T05:48:08.528-08:00Comprehensively QuirkyCoping with autoimmune disease with grace (sometimes), humor (always) and dignity (rarely). Plus knitting and cats!Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.comBlogger432125tag:blogger.com,1999:blog-7633772841701452633.post-59541511635335121812019-08-28T15:05:00.002-07:002019-09-11T12:56:17.063-07:00In praise of overthinkingThe man I'd been seeing since late June has been ghosting me for over a week. I know that something bad happened in his life but no more. After we'd started spending time together I was very happy. Many people commented on it. I asked myself, will I be as unhappy if/when this ends? But told myself not to overthink it and just enjoy. I had a reason to look forward to each week and had hope for the future.<br />
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Big mistake. I should have listened to that voice and backed away. I should have guarded my heart instead of trusting that the lessons I'd learned from past relationships would help this time. I hadn't factored that I don't get to have the things that everyone else does. No health, no job or career, no partner. None of that is for me.<br />
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I'm sure my broken heart will heal eventually; it always has. But for right now I hate almost everything about my life. I am very thankful for good friends, and my mom has been very supportive, but this still feels like too much to bear.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-1031661361278413132019-06-06T23:05:00.000-07:002019-06-06T23:05:14.285-07:00The simplicity of hard choicesI'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?<br />
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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.<br />
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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.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0tag:blogger.com,1999:blog-7633772841701452633.post-9260166213178691182018-10-21T16:26:00.000-07:002018-10-21T16:26:01.397-07:0042 and 25October is a strange month in my life. Last week I turned 42 years old and the week before that marked 25 years since my <a href="https://en.wikipedia.org/wiki/New_daily_persistent_headache">constant headache</a> 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.<br />
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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.<br />
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Right now I'm going to be kind to myself and take a nap.<br />
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<span style="text-align: start;"> I climbed a view tower yesterday in memory of an arthritis friend who passed away recently.</span></div>
<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-73950032067786124922018-07-31T17:11:00.000-07:002018-07-31T17:11:03.478-07:00Caribbean Vacation! and hard newsI 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.<br />
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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.<br />
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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 <a href="https://www.cnn.com/2018/07/30/us/carr-fire-california/index.html">Carr Fire</a>. 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.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-23651735338003007742018-06-02T01:51:00.001-07:002018-06-02T01:51:50.905-07:00Here'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!<br />
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A <a href="https://www.thestranger.com/features/2018/04/25/26086363/evicted-over-49-what-happens-when-seattles-poorest-tenants-cant-make-rent">local news article</a> 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.<br />
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-60951170165349786282018-03-24T00:16:00.001-07:002018-03-24T00:16:59.856-07:00Never a dull moment; or I am Summer's flooded apartmentLife 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.<br />
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Yesterday morning: minor flooding in my bathroom, kitchen, bedroom closet. No leak found, water vacuumed.<br />
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Yesterday afternoon: more flooding in bathroom, living room, bedroom, kitchen. Mass furniture migration. Kitchen wall opened, leak found, leak patched overnight. More water vacuumed.<br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">Lake Living Room</td></tr>
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This morning: ceiling rain in the shower, drain pipe repair, snow, hysterical laughter.<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjxxLR45bX1mWGYywWJa9v0XXXxg37ZjeFdihpzHlJG7hWl-ul-_SsECDCrwAVqXh7qnzQcew3YQ6fhXqLWvXiUdDZrTVCIfOI1yR8m9fVRhUouOj4RBeH7hOEm_5Ms9BqCIkhi8aOP_tS/s1600/IMG_7435.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="411" data-original-width="675" height="242" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjxxLR45bX1mWGYywWJa9v0XXXxg37ZjeFdihpzHlJG7hWl-ul-_SsECDCrwAVqXh7qnzQcew3YQ6fhXqLWvXiUdDZrTVCIfOI1yR8m9fVRhUouOj4RBeH7hOEm_5Ms9BqCIkhi8aOP_tS/s400/IMG_7435.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">This didn't inspire confidence</td></tr>
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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.<br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">Ella didn't approve </td></tr>
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By noon today: the drain pipe, perforated by aggressive snaking Thurs morning, was repaired. Temporary plastic was applied.<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr9C9XHStCiAkm8sEwkYaAMG4XoJrJcpt-29nlziKXch0a_O_51F47RCHzuxxUQa83y8sAzPKzB0HPOpo8mhePrMf97F3_Cg9b6oLhyLUF0_ATtHbuQu8KR9bakiNWd_eE_ncCt6GqQHri/s1600/IMG_7434.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr9C9XHStCiAkm8sEwkYaAMG4XoJrJcpt-29nlziKXch0a_O_51F47RCHzuxxUQa83y8sAzPKzB0HPOpo8mhePrMf97F3_Cg9b6oLhyLUF0_ATtHbuQu8KR9bakiNWd_eE_ncCt6GqQHri/s400/IMG_7434.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">New shower ceiling</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvvJtg1Wp23WfIy9mhLwjT3xeBXIOoYIrHIEvkqpWP7NJqrkQiOvfnXqTR30mVphE6zEmHcbTpvW3KeXZEs0NHjacHSSOS6tC8QGr2e8fq4PkuV2T_trAx9QiuBdY0Nzq-eyK6LOn3b6Nc/s1600/IMG_7430+%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1072" data-original-width="1600" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvvJtg1Wp23WfIy9mhLwjT3xeBXIOoYIrHIEvkqpWP7NJqrkQiOvfnXqTR30mVphE6zEmHcbTpvW3KeXZEs0NHjacHSSOS6tC8QGr2e8fq4PkuV2T_trAx9QiuBdY0Nzq-eyK6LOn3b6Nc/s400/IMG_7430+%25281%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">One of a kind kitchen</td></tr>
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The point when I broke:<br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">11:09 am</td></tr>
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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.<br />
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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.<br />
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<u>Ella</u>: 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.<br />
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<u>Health update</u>: 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.<br />
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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.<br />
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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.</div>
Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-61274590639388686262018-01-22T01:21:00.000-08:002018-01-22T01:21:16.689-08:00DeniedAlready 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 <i>want</i> to be the squeaky wheel but I am good at it.<br />
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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.<br />
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">I'm too tired to feel shame<br />Caption: I want my underpants back. Tuesday Amazon delivery. Blue boxers. <br />Won't fit you; I'm tiny. No questions asked.</td></tr>
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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.<br />
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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.<br />
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PS: Amazon refunded my purchase and replacement boxers arrived today.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-19321085420065211392017-12-31T13:47:00.001-08:002017-12-31T13:47:46.681-08:002017 TurdnadoHello 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.<br />
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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.<br />
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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.<br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">Water posed on my Christmas tree</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp7lJmz0QwRjgCQV6LeeaKTXyWTiPN5pYm9utJaKz9Nh6RjseXcL98kHLVVvKEFtGR4NHVUsVRgnTFCT9il9mR7nAQ9kqniuNJLxoat9PWj9zgEgWuJBxuSrjoHibXtdFBVdqU5U88Yabt/s1600/IMG_6956.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp7lJmz0QwRjgCQV6LeeaKTXyWTiPN5pYm9utJaKz9Nh6RjseXcL98kHLVVvKEFtGR4NHVUsVRgnTFCT9il9mR7nAQ9kqniuNJLxoat9PWj9zgEgWuJBxuSrjoHibXtdFBVdqU5U88Yabt/s320/IMG_6956.jpg" width="320" /></a></td></tr>
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Top left: April's Peepicide; Top right: brownies for Sweetie</div>
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Bottom left: Xmas tree; Bottom right: my new hat!</div>
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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.<br />
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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.<br />
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<span style="font-size: large;">May we all have a better 2018. May love win.</span></div>
Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com3tag:blogger.com,1999:blog-7633772841701452633.post-38774864435959667932017-12-20T15:05:00.002-08:002017-12-20T22:21:43.668-08:00December catch-upOk. 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! <span style="font-size: x-small;">finally </span>Now it's just my own immune system kicking my butt, which I'm actively not thinking about until Jan.<br />
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I returned to the pain clinic in Nov as well, the one that cold turkeyed me off morphine in 2013 thus trashing my <a href="https://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis#Function">hypothalamic-pituitary-adrenal axi</a>s. 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.<br />
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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!<br />
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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 <a href="https://www.urbandictionary.com/define.php?term=teal+deer">teal dear</a> decorates the base. Ella, remarkably, has shown zero interest in all of this.<br />
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In knitting news, I knit this winter's #resist hat. It worked up fast in worsted wt yarn.<br />
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<tr><td class="tr-caption" style="text-align: center;">Knit hat with "feminist killjoy" in rainbow letters.</td></tr>
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And more ornaments, taking advantage of the 8 days each year that I'm motivated to knit such things ;)<br />
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It's been a hard year but it was filled with love. May you all feel cherished this winter.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-10325987114056243042017-10-07T13:54:00.001-07:002017-10-07T13:54:21.566-07:00A kinder, gentler OctoberAfter 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 :)<br />
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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.<br />
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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.<br />
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ella helps model my latest<a href="http://ravel.me/summerlea/tl7bb"> knitting project</a></td></tr>
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-78653542797950976562017-09-17T12:16:00.001-07:002017-09-17T12:16:31.856-07:00Another one bites the dustI am once again a single woman. After stringing me along for months and lying about his feelings and intentions, finally on Friday Sweetie just...let go. He was not stronger than his fears, especially when he started believing the lies depression told him. I'm still in shock but friends have had many kind words and that helps a lot.<br />
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<i>Cat litter calls: feel free to admire my breakup yarn while you wait.</i><br />
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I forget how weak many people are and how scared they are of love. Love is the reason I get up in the morning. It's what gives my life meaning and joy. Love makes my heart sing even when tears are falling.<br />
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I realize I cannot rely on the fickle nature of romantic attachments for my future. What I truly long for is community and family. There have to be local families who would love an honorary aunt. To that end I'm going to start attending a community church on Sunday evenings. It's a bit of a trek and previously had conflicted with my support group meetings then softball spectating (ugh!). But now is the time. Maybe this is an unattainable goal but all my goals seem out of reach so why not aim for the stars?<br />
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com3tag:blogger.com,1999:blog-7633772841701452633.post-48035096049577563052017-08-23T14:57:00.001-07:002017-08-23T14:57:47.937-07:00Eclipse!<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: transparent;">My Sweetie and I took an eclipse road trip and it was AMAZING! We make a great team with superb catering* and really enjoyed having two solid days together. The drive down was mostly easy peasy if long, with a nice break to visit a friend in Centralia, WA. We stayed in Corvallis, OR, in the backyard of someone from my online knitting group.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Sunset Aug 20th, just south of Portland</td></tr>
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The six of us hung out in the back yard Monday morning watching the eclipse and playing with shadows. As the eclipse progressed it gradually got cooler, the light got strange and dim but still directly overhead, and it was unlike anything else. <span style="background-color: transparent;">Totality was incredible and unique and felt too short. </span><span style="font-family: inherit;">As the eclipse ended it seemed like early morning as the light and temperature increased. And then it was a normal summer day.</span><span style="background-color: transparent; font-family: inherit;"> </span></div>
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After the eclipse we poked around Corvallis a little, napped in a hammock, fed ganache to our hostess' daughter, then packed up and headed home. It was perfect. My body cooperated pretty well and I felt like I had a break from being sick for a day.**</div>
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<span style="font-family: inherit;">Sweetie and I stare at the sun just before totality</span><span style="font-family: inherit;">.</span></div>
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<tr><td style="text-align: center;"><img alt="wearing our eclipse glasses of course" src="https://c1.staticflickr.com/5/4391/36570300182_7b8ab00bc1.jpg" style="border: none; margin-left: auto; margin-right: auto; max-width: 670px;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://c1.staticflickr.com/5/4402/36693081196_fa9574a5f6_b.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a><span style="background-color: white; orphans: 2; text-align: start; widows: 2;"><span style="font-size: x-small;">You can't see <i>anything</i> through eclipse glasses so be extra impressed by this selfie.</span></span><br />
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<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">What my phone saw during totality<br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Leafy shadows acting as cameras obscura</td></tr>
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<span style="font-family: inherit;">Afterward I got a little silly with a nibbled leaf-turned-pinhole camera.</span></div>
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Driving home was not as fun. I navigated us on side roads to avoid the awful I-5 traffic until north of Vancouver. Then it was a long slow slog for 130 miles until past Tacoma. It was fully nighttime so Sweetie napped in the back seat while I drove much of that. I'd brought a quilt and pillow and made a nest for him. My self care techniques are appreciated by healthy people too :)<br />
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I'd cleverly placed the stereo aux cable out of driver's reach so couldn't connect my phone for driving music. Instead I played "how long until the Subaru notices its headlights aren't on?" (40mi). And quietly sang whatever song came into my head. And talked to traffic and other drivers. And cruised through the radio stations a few times. Finally I pulled out my phone and played music with it sitting in my lap. You know you've found your match when he thinks all the above are adorable.<br />
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<span style="background-color: white; font-variant-ligatures: normal; orphans: 2; widows: 2;"><span style="font-family: inherit;">We got back to Seattle at 2:30am and quickly fell into our respective beds. Yesterday I had a rest day. And now we're firmly back to normal life, albeit with a reminder of how magical and surprising life can be.</span></span><br />
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<span style="background-color: white; font-variant-ligatures: normal; orphans: 2; widows: 2;"><span style="font-family: inherit;"><br /></span></span>
<span style="background-color: white; font-variant-ligatures: normal; orphans: 2; widows: 2;"><span style="font-family: inherit;">* Black bean </span>burritos<span style="font-family: inherit;"> with chili-lime-cilantro brown rice, <a href="https://en.wikipedia.org/wiki/B%C3%A1nh_m%C3%AC#Ingredients">banh mi</a> with spicy sausage and homemade pickled vegetables, strawberries, plums, lychee, cold brew coffee, and dark chocolate ganache.</span></span><br />
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<span style="background-color: white; font-variant-ligatures: normal; orphans: 2; widows: 2;"><span style="font-family: inherit;">** YAYYYYY!!!!!!!!!!</span></span>Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0tag:blogger.com,1999:blog-7633772841701452633.post-71134056198977925022017-08-14T15:23:00.000-07:002017-08-14T15:23:10.819-07:00Rheumatology updateAwesome 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?<br />
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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!<br />
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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.<br />
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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. 😁Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-43119130372178149862017-07-06T23:40:00.000-07:002017-07-06T23:40:36.952-07:00Let's get probiotic; or I am Summer's microbiomeLast month I took a <a href="https://www.reddit.com/r/cfs/comments/6d0e02/ubiome_is_giving_out_free_gut_testing_kits_act/?st=j4tgku2x&sh=29a99cc0">free uBiome</a> 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.<br />
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The first crop: Smári, Noosa and Fage<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOEUJDdh2Q38aXOWZVoNr-HQEnmEcLkKRrLHkijmR5bEsY2gxPoRdQlBfnaiamIqIFZbKNz75gDJcjQIYXBWbX8Z09DhKM3L-Jcb4VwlpKut_xzmqsEgo6sW94U0r-U2NQAyk8TCL29u6p/s1600/IMG_5908.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOEUJDdh2Q38aXOWZVoNr-HQEnmEcLkKRrLHkijmR5bEsY2gxPoRdQlBfnaiamIqIFZbKNz75gDJcjQIYXBWbX8Z09DhKM3L-Jcb4VwlpKut_xzmqsEgo6sW94U0r-U2NQAyk8TCL29u6p/s320/IMG_5908.jpg" width="320" /></a></div>
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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.</div>
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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.</div>
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Fage didn't impress me. It was <u>very</u> 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.</div>
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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. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJVcrWZ0jfKn9TkdX8GUXMT2-mkfwJ1tGjsBZYkOI9OwGKM6-9bDKDWAupnxaq3dCcQAIJkDP8UkExmx0ENV3PsNMB4YJwzhSsNFy7gBqZQKxcrXC5H8naJaO0eJJEDUhzrmIzs_d09MhX/s1600/IMG_5975.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1263" data-original-width="1600" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJVcrWZ0jfKn9TkdX8GUXMT2-mkfwJ1tGjsBZYkOI9OwGKM6-9bDKDWAupnxaq3dCcQAIJkDP8UkExmx0ENV3PsNMB4YJwzhSsNFy7gBqZQKxcrXC5H8naJaO0eJJEDUhzrmIzs_d09MhX/s320/IMG_5975.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Welcome to the Cult of Ellenos</td></tr>
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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.</div>
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Ellenos will remain my dessert or afternoon snack yogurt.</div>
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* I have a couple jars left from 2012's batch, back in healthier days.</div>
Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-49233618234604619842017-06-27T23:41:00.001-07:002017-06-27T23:41:48.576-07:00One more thing x 10²³I 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.<br />
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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 <a href="https://en.wikipedia.org/wiki/Systemic_lupus_erythematosus">SLE</a> 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!<br />
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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!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0tag:blogger.com,1999:blog-7633772841701452633.post-36232965213470138262017-06-18T11:36:00.002-07:002017-06-18T11:36:43.482-07:00Knitting update: Morvarch is done!In April I finished <a href="http://www.ravelry.com/projects/summerlea/morvarch">Morvarch</a>, 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.<div>
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I don't have the energy for real photo shoots so I'll just have to hope these pictures do it justice :)<br /><div>
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<tr><td class="tr-caption" style="text-align: center;">Morvarch's length matches my wingspan: perfect!</td></tr>
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<tr><td style="text-align: center;"><a href="https://c1.staticflickr.com/3/2836/34304532776_b2d9de5ffb_b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="741" data-original-width="800" height="296" src="https://c1.staticflickr.com/3/2836/34304532776_b2d9de5ffb_b.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just the cables, ma'am. <br />With bonus butt in my new favorite jeans.</td></tr>
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<tr><td style="text-align: center;"><a href="https://c1.staticflickr.com/5/4178/34096117021_1d6599754d_b.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="526" data-original-width="800" height="419" src="https://c1.staticflickr.com/5/4178/34096117021_1d6599754d_b.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This accurately captures its actual color</td></tr>
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Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-72820460867597774992017-04-18T01:47:00.001-07:002017-04-18T01:47:55.222-07:00The high price of subsidized housingI 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.<br />
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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.<br />
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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.<br />
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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.<br />
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I feel affinity for this quote about raccoons. "Their willingness to persist on our leftovers while living in marginal habitats makes them very common."<br />
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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.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com4tag:blogger.com,1999:blog-7633772841701452633.post-32117750727389266502017-04-15T10:00:00.000-07:002017-04-15T13:22:30.089-07:00Rollercoaster March, or I am Summer's Continuing Search for Diagnosis and TreatmentIn early March I had cognitive testing. The results came back and even my <span style="font-family: inherit;">"performances with incontinence remain within normal limits."</span> I used to be extraordinary*, now I'm mostly above average and sane and coping with <a href="http://www.webmd.com/add-adhd/guide/executive-function#1">executive function</a> difficulties. That's my takeaway anyway.<br />
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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 <a href="https://patient.info/doctor/seronegative-arthropathies">seronegative</a> rheumatology options my insurance covers, which doesn't make me feel as special as you may think.<br />
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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.<br />
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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.</div>
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<span style="font-family: inherit;">*"An e<span style="color: #454545;">stimated high average to superior level of premorbid functioning"</span></span></div>
<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0tag:blogger.com,1999:blog-7633772841701452633.post-87697994670085861952017-04-14T14:15:00.000-07:002017-04-14T14:15:05.024-07:00Cleaning while chronically illSomething 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.<br />
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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.<br />
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I like my apartment. It's well located, my unit is bright and spacious, I can afford the rent. But the building is <i>dirty</i>. 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.<br />
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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.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-78942680537940173752017-03-12T00:11:00.002-08:002017-03-12T00:11:50.217-08:00Grief, Acceptance, and Deja VuI 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.<br />
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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.<br />
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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.Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com2tag:blogger.com,1999:blog-7633772841701452633.post-86248828672553915612017-02-22T15:24:00.001-08:002017-02-22T15:24:07.644-08:00Refractory diseaseI'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.<br />
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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.<br />
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In the meantime, I'll keep knitting. I cast on <a href="http://www.ravelry.com/patterns/library/morvarch">Morvarch</a> 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.<br />
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<tr><td class="tr-caption" style="text-align: center;">The yarn is "Emerald City" by Hazel Knits, it looks like evergreen trees :)</td></tr>
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com6tag:blogger.com,1999:blog-7633772841701452633.post-10995308780493447302017-01-16T14:42:00.001-08:002017-01-16T14:42:08.860-08:00UnafraidMy 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.<br />
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<br />Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com1tag:blogger.com,1999:blog-7633772841701452633.post-22276511691378532172016-12-21T17:06:00.005-08:002016-12-21T17:06:47.997-08:00Scary brain stuffBefore Thanksgiving I had a Benlysta infusion that triggered many neurological and cognitive symptoms. It was scary and still is. My rheumatologist ordered a brain MRI which thankfully showed no structural abnormalities. I saw her yesterday and we're testing for <a href="http://www.lupusinternational.com/About-Lupus-1-1/Central-Nervous-System-Lupus-Overview-/Central-Nervous-System-Lupus-CNS-.aspx">CNS lupus</a>. That involves ANA labs and neuropsych testing once insurance approves.<div>
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If there is CNS involvement, which seems likely at this point, I'll stop Benlysta and start something stronger. Like everything else in autoimmune disease, this involves a trade off: greater risk of infection and more side effects for less Brain Wrong (my highly scientific term).</div>
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I told my Sweetie what's going on, that was hard. I don't want him to see me primarily as a sick person or to worry. He's been very supportive. I haven't told him my theory that autoimmune disease attacking my brain makes me an auto-zombie, it feels too soon.</div>
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<tr><td class="tr-caption" style="text-align: center;">Ella snuggles have helped</td></tr>
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I had a Benlysta infusion yesterday and if that kicks in I'll start feeling better tomorrow or Friday. If not, eh, I will muddle through.</div>
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Positives, because I like to end on an up note: </div>
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<li>I have a fantastic new rheumy</li>
<li>I still have friends despite being sick most of the last 3 months</li>
<li>Sweetie--I can't believe my luck</li>
<li>My mom, who's been great.</li>
<li>Internet knitting friends :)</li>
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Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com4tag:blogger.com,1999:blog-7633772841701452633.post-54063778971460791672016-12-16T20:51:00.002-08:002016-12-16T20:51:41.921-08:00Tiny Forest's DebutI finished five tiny trees in time to gift them to my mom yesterday. She liked them very much and laughed. She also thought the pink tree was a lightbulb so take her reaction as you may. Better photos will be taken in their forever home. Maybe.<br />
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<tr><td class="tr-caption" style="text-align: center;">Presented for your amusement</td></tr>
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The last tree was knit while playing pub trivia and in the stark light of day it has a distinct yet inadvertent Seahawks/Sounders vibe.<br />
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<tr><td class="tr-caption" style="text-align: center;">MLS champs get their own tree?<br /></td></tr>
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I used the <a href="http://www.ravelry.com/patterns/library/pint-sized-pines">Pint Sized Pines</a> pattern. The only change I made was to work the Double Cabled Tree's decs in Row 24 as *p1, k2tog, p1, ssk* around so they matched the direction of the cables they perch atop. Because yes, I do notice stuff like that ;pSummerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0tag:blogger.com,1999:blog-7633772841701452633.post-28163740386895429632016-12-11T18:01:00.001-08:002016-12-11T18:01:09.937-08:00Summer's WorkshopI've been getting in the holiday spirit today, crafting to music. I started with Christmas music but listening to it alone made me sad. And it didn't fit my mood, so classic rock it was!<br />
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<tr><td class="tr-caption" style="text-align: center;">A previously knit angel ornament</td></tr>
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Last night I knit a cabled tree ornament. Some stitches were wonky so it got a bath before bed. It was still wet this morning and I stuck it on the baseboard to dry. I finished knitting a second angel today which received similar post-bath attentions.<br />
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<tr><td class="tr-caption" style="text-align: center;">Speed drying rack</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My couch work zone</td></tr>
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I also finished two decoupage notions tins.</div>
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<tr><td class="tr-caption" style="text-align: center;">(L) stitch markers, (R) needles and waste yarn</td></tr>
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The cabled tree gets a cork trunk. Here I'm testing the stability of used corks. A meat cleaver came in handy to shorten them.</div>
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The first tree (of 3+) and angel are now done:<br />
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I painted this cork trunk to obscure WASHINGTON printed around its base. Brown watercolor plus Mod Podge, then a thin coat of MP, worked very well.<br />
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Last week I knit a bird for Ella and stuffed its head with catnip. She seems to approve.<br />
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Summerhttp://www.blogger.com/profile/14800522660951414782noreply@blogger.com0