1. I got the most amazing hand-drawn postcard from elfin!

2. Classes started back. Spoiler alert: I'm exhausted. LOL I'm doing that lovely thing where by the end of the day I feel feverish, like I have the flu. (No worries; I don't actually have a fever.) But I only have to be on campus two days a week this semester, and I'm hoping the work from home days will help mitigate the fatigue.

3. I'm not doing an end-of-the-year reflection post where I assess how I did on my 2022 goals and make some new ones for 2023. For the past several years, it's just been an accounting of how I only met one or two of my goals and did terribly on the rest, and that kind of post does not spark joy. I'm still reflecting on 2022 and making goals for 2023, I'm just doing it in my paper journal.

4. Thursday night, I went to see the Legally Blonde musical, and it was fantastic! It was an off-Broadway production, so the cast was phenomenal. I really enjoyed the way the show has been updated from the movie. Definitely recommend.

5. I gave up caffeine because I read that people with fatigue who are heavy caffeine users often create a crash effect that exacerbates their fatigue. I was drinking between two and four full-size Coke Zeroes in the morning + some black tea, so that seemed a reasonable possibility to me. I stopped caffeine on December 27 and have had no positive effects on fatigue. If anything I am more noticeably fatigued. Do y'all think it's been long enough that if giving up caffeine was going to magically make me less tired, it would have done so by now? Or do I need to give it some more time?

1. Warnock has been elected our Senator! What a victory, and I'm very happy to have been part of it.

2. I have finished grading, turned in grades, and put the semester to bed. I also had a book review to turn in at the same time, so I was writing that simultaneously with grading (which was actually kinda nice; just as soon as I got disgusted with grading, I could switch gears to writing). I got the review finished and got good feedback from the editor and started making headway on my classes for the spring semester. I think I am now going to do nothing for a few days. LOL

3. Josh and I watched Everything Everwhere All at Once, and I can't recommend it highly enough. I have not watched many TV shows or movies since the pandemic, even ones I am interested in watching, so when I tell you that this is must-see, the praise is high. This movie really touched me emotionally. I spent the last third of it in tears. The acting is so good. The writing is so good. The message is so good. ( brief spoilers )

4. My endocrinologist has upped my thyroid meds, so crossing my fingers that will make a difference in my energy levels.

5. The Victorian Popular Fiction Association's Third Sex Reading Group read Night Brother this month, and it was a very interesting read. I enjoyed the book when I was reading it, but certain aspects of the novel fall apart on close analysis. None of us in the reading group could quite decide what Garland is trying to say about gender/sexuality.

The Night Brother by Rosie Garland

My rating: 4 of 5 stars


I really enjoyed this. It's such an intriguing premise--that Edie and Gnome share one body and fluidly shift from male to female. Add in the Edwardian setting, and I'm hooked.



View all my reviews

1. I got wonderful postcards from oracne and misbegotten! Thank you!

2. MRI scheduled for tonight at 8:30. It is wonderful that this facility is open after normal business hours and on the weekends, making it easy for people who can't take off work to schedule imaging. But, lordy, do I not want to drive an hour away in the dark to get this test done. LOL *cross your fingers for me*

Biopsy consult scheduled for the 31st. Who knows when the actual biospy will occur. No one is moving with any alacrity. I am annoyed (but let's be real; this is indeed my default state LOL).

Still haven't gotten Emma's lumbar puncture scheduled. Cymbalta seems to be having minimal effect on her pain levels. :( Back to the meds drawing board for her, I think.

3. Today is Fiona's last day of school! She won eleventy billion awards at Awards Day, including several state awards (for math and for writing; her entry to the RESA Writing Contest was a kickass poem about an owl). She was also the Outstanding Third Grade Musician. *preens in the reflected glory*

4. Peacemaker is a delightful show that you all should watch. It has many things going for it: it is short (this may actually be the #1 selling point for me), it has a diverse cast (people of color, women, queer characters), it manages to be really endearing and heartwarming. I mean, I don't understand how the show manages this last exactly; it's some kind of magic (okay, it's really excellent writing and a truly stellar cast). The characters are mostly terrible people, and the show deals with some super heavy themes, and it's incredibly violent, and yet I cried more times than I would care to admit (I care to admit no times), I am charmed by all the terrible people (except the villains, obviously--caveat, Todd the Wraith has a special place in my heart always), and this show is just damn awesome. John Cena is a fucking amazing actor, and I never thought I would be saying that, but damn. Also Danielle Brooks. And Eagley. :)

5. So many books!

( Matrix (Groff), Victorian short stories, The Crime in Mind (Rodensky), Embracing Refuge (Janssen) )

My lab results from the endo came in; thyroid is finally fucked enough to start taking a low dose of Synthroid. I guess that's why I've been taking two and three naps a day for the last week (which if you know me, you know that I only nap under extreme duress) and hurting more and more. Pharmacy didn't have the low dose on hand; will get it in today, so I can start taking it tomorrow (must be taken first thing in the morning).

But the real joy is that over the weekend, one of my supra clavicular lymph nodes started swelling. I think. Maybe it's a knot. I certainly hope so because it's on the left side. Don't google it. I'm leaving in just a few minutes to get an ultrasound of the area. Prayers, well wishes, and all exhortations of the universe appreciated. I do not have time for this. I am writing a class that goes live on Monday, the conference I run happens on Thursday, and I am not interested in dealing with whatever the fuck this is.

Love y'all. Thank you in advance. Will update on my return.

1. So happy to have Emma home. She just got her grades, and she made all As! She was so worried about chemistry, but she pulled it off (she suspects with the application of a curve LOL).

2. Sammy goes to the vet for a biopsy this week. He has these scabby places on his head, and I've been saying they're weird for weeks now. When Josh took him to the vet ages ago for his sneezing, the vet looked at them but didn't think anything of them, but a couple of weeks ago, they migrated to his ears and now everyone agrees with me that they're a problem. No duh, everyone. They are not ringworm because we'd all be covered in ringworm LOL and they don't light up on the fungal UV light at the vet's, but he thinks they might be fungal, so we're gonna do a little biopsy. He has to be sedated, bless him.

I swear we had cats for forever, and I have not done as much stressing over them my whole life as I have over this one kitten in the last three months. LOL

3. I got a card from misbegotten: Don't worry; be purry! I'm trying, friend. :)

4. So much grading, OMG. But also so close to being done, thankfully. I decided to give audio feedback on final essays this semester, and I'm digging it.

5. Y'all, get this. I finally broke down and went to the dentist because I'm tired of my face hurting all the time, and he leans me back in the chair, and takes a peek, and then he looks at me really funny. Like really funny.

And he says, "I don't see any ulcers in your mouth."

And I'm all, "What do you mean you don't see any ulcers in my mouth?"

He says, very diplomatically as if speaking to his beloved aunt who now routinely sees pink elephants in tutus dancing across the room, "Well, I don't see any right now. Take a look," and hands me a mirror, and there aren't any ulcers in my mouth.

Now I know for a fact I have had ulcers in my mouth at least some of this time because I have felt them with my tongue and/or gotten out a flashlight and seen them in the mirror, but my mouth hurts pretty much all the time, so I've just assumed they've been there all the time. And they haven't.

"So why is my mouth hurting?"

"I think you have trigeminal neuralgia."

Oh, fuck my life. I'm going to see my neuro on Tuesday, and I'll float it by him. Maybe he'll want to do another MRI; he did suggest initially doing yearly MRIs. If I do have TN, it's presenting atypically, but I do think it's interesting that the dentist just offers this potential diagnosis that slots right into my autoimmune/neurological issues without knowing any of my medical history. He said the pain doesn't sound like TMJ to him because of where it is in my face, but I'm getting fitted for a mouthguard in a couple of weeks anyway because I do grind my teeth. OMG. Just whatever. LOL

1. I haven't posted in awhile because I have been really struggling with fatigue since I got back from NM. I knew that I was going to pay for going, but I am a little surprised at the extent to which going to that conference wiped me out. I mean, I didn't *do* anything. I didn't sightsee or shop or do any extensive walking. I sat around the conference venue and listened to people talk; I sat around my friends' house and enjoyed their hospitality. That's it. And in the weeks since I got back, I have been so fatigued that essentially I have gone to work, come home and slept on the couch until dinner, eaten dinner, slept on the couch until bedtime, and then gone to bed at like 8:30. Really only in the last week has the fatigue lifted to the point where I'm not just napping pretty much all the time I'm not working.

I've also been having mouth issues since I got that crown put on at the beginning of February. I've had ulcers since it got put on and TMJ and my mouth has just hurt since then. Apparently ulcers are just A Thing some people get after dental work although I was never one of those people before; also they are A Thing that people with autoimmune disorders get. They are also A Thing people with celiac get although typically only when they are still eating gluten and they resolve once going gluten free. I did get accidentally glutened in February after the ulcers had already appeared but possibly that prolonged them. Anyway, just miserable and stupid.

So I have been feeling quite sorry for myself. I am very tired of being tired. I cannot explain how demoralizing it is to be tired all the time. *sigh*

2. Josh and I had our 21st wedding anniversary earlier in March. Our marriage can legally get tanked at the bar now. LOL

3.

Creating Significant Learning Experiences: An Integrated Approach to Designing College Courses by L. Dee Fink

My rating: 4 of 5 stars


I think this book is really interesting and contains a lot of really valuable information about how to structure courses outside of the traditional lecture model, but something about the way it is written did not hold my attention well. I think it's a me problem and not a problem with the book. IDK



View all my reviews

Minding Bodies: How Physical Space, Sensation, and Movement Affect Learning by Susan Hrach

My rating: 5 of 5 stars


This is a very cool book. It's all about the science behind the intersection of cognition and movement and the way in which that should shape pedagogy. Lots of really great ideas here for incorporating movement into teaching, some of which are more doable than others depending on discipline, institution, and resources.



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4. And have some recs:

you're not a coward cos you cower by hellcat_jirel
The Witcher
Geralt/Jaskier/Yennefer
Season 2 Fix-it fic
It's possible this might be written by a certain fanlet of mine, ahem. :)

I've turned down every hand that has beckoned me to come by aphrodite_mine
We Have Always Lived in the Castle
Constance/Merricat
Non-con
Delicious and dark and wonderful

Care for Delicates by gloss
Star Wars/Grumpy Old Men fusion
Poe/Finn
Just delightful

1. This Thanksgiving week was truly wonderful. Josh got Emma on Friday, and my parents came on Monday. My brother and his family were supposed to come on Tuesday, but my sister-in-law caught the stomach virus that has been going around the school where she teaches and didn't feel 100% by the time they were supposed to leave on Tuesday morning. She was clearly really upset about having to cancel and didn't want to disappoint us and suggested they could come on Wednesday if she felt better, and I was like, "Look, girl. I have gone on many a trip that I shouldn't have because I didn't want to disappoint family and was afraid they'd be pissed, and I was miserable. I went to the big family reunion at mom's when Fiona was a baby when I was in the middle of an unrecognized allergic reaction to sulfa drugs, and it was hellish. Take care of yourself. We will not be mad." So they cancelled, and it's a good thing they did because my niece started throwing up Wednesday night. Poor kiddo. :(

Other than missing my brohopper and his crew, it was a perfect week. We ate like gluttonous worthless beings and it was glorious. Emma requested French onion soup, so we made that over the weekend (gruyere and brandy required, fights in the comments allowed); smoked catfish on Monday; smoked chicken on Tuesday; beef roast on Wednesday; ham on Thanksgiving. We watched the parade and had our Christmas with mom and dad in which among other generosities they forgave us $800 on our loan repayment for the new car (essentially this whole semester's worth of repayments). Another gift mom gave me is this beautiful silver tree sculpture; it's a gratitude tree, and it came with a box of leaves for everyone to write their gratitudes on. Then you hang them on the tree. So we did that on Thanksgiving day. It's really a beautiful piece of art, and it was sweet to share what we're thankful for.

Emma just burst out crying five minutes ago and hugged me and sobbed that she wasn't ready to go yet. I'm not ready for her to go yet either, but I put on my big girl panties and told her she's only going to be gone for a couple weeks and then she gets to come home for a whole month. It is very hard to be the mom sometimes, LOL.

2. I think this medicine is working! The neuro put me on gabapentin, and I have seen a marked reduction in skin and joint pain even at what he calls a "baby dose." It makes me really tired, so that's annoying; I definitely do not need any added fatigue, but I will take the pain reduction, and since the other initial side effects like dizziness, giddiness, etc have pretty much resolved, I'm hoping the tiredness will too. Exercise continues to be a mixed bag. I started doing yoga again with success, but walking just wears me out. We went for a walk yesterday, leisurely pace and maybe thirty minutes, and it exhausted me to a deeply annoying (Josh would say worrying) degree. *sigh*

3. Neuro has suggested that IV steroid infusions might also be something we try at some point. I think maybe some of you have experience with that. Any wisdom/advice you could offer? It sounds scary to me, and I'm worried about potential side effects. I haven't really done any research because we're not at that point yet, so I know very little about them.

4. My goal is to finish my Yuletide story before Monday. My recip has great prompts, I have an idea and a beginning on paper, and now I just need to get it done! Cheerleading appreciated.

1. Emma did a Guardian rewatch and decided to read the novel when she finished. I received a series of texts of increasing WTF-ness over the course of this experience which culiminated in the following: "It was horrible, and I didn't understand a lot of it, but at least it's over." LOL

2. Emma wrote a very long fic about a video game (she won't tell me her AO3 handle LOL) and she's very excited to be getting a few comments and kudos on it. "But not too many, Mom. I don't want too much attention. I'm like a fandom hipster on accident."

3. I woke up around 4 this morning and tried to go back to sleep but couldn't, so I went outside to look at the lunar eclipse. Our streetlight has "helpfully" gone out, so I had a nice view of the moon slice.

4. I am going to break from tradition and send out Valentines cards instead of winter cards this year. I just don't want to fool with doing another thing over the break.

5. I love my neuro. I saw him yesterday. We are going to try some new meds to deal with the increasing pain (joint pain, skin sensitivity) I'm experiencing. He never denies my experience, and he always tries to figure out how to deal with my symptoms even if he can't diagnose me with a specific disease. I'm grateful.

( book reviews )

1. That infectious disease doctor never called me to set up an appointment.

2. I went to see the rheumatologist instead who said the following:

3. Nothing is wrong with me, and I should consider that my symptoms are just the result of normal aging.

4. She's actually an expert in all autoimmune diseases except thyroid and neurological, and if she can't find anything wrong with me, she doesn't have any other suggestions for me.

5. If she treats Emma like this, I cannot be held responsible for my behavior.

Fortunately, Emma has documented nerve damage and blood work to support a disease diagnosis (or as Dr. Ego Moreau calls it, "objective criteria," as opposed to the "subjective criteria" of my joint pain and exhaustion), so I think this jackass will help her. And if she doesn't, we will immediately seek another opinion, so it will be a delay in her care rather than an end to it.

But I am now done. I cannot emotionally or financially continue to pursue a diagnosis and treatment for myself. I am going to concentrate on getting help for Emma, and that will be enough.

I do not know what to do, and I'm looking for opinions.

My original plan was to wait until Emma goes to see the rheumatologist on Dec 20 and then go the rheumatologist again myself to see if her lupus diagnosis plus my continued positive ANA, two positive tests for RNP antibodies (March and August), plus this whole whatever it is that may or may not be Epstein Barr thing changes anything from when I saw the rheumatologist in 2020.

This checklist is the diagnostic criteria that doctors look for to determine lupus. You don't have to have all of these, but I don't know how many or what weight is given to any of them. Emma has the anemia, the anti-Sm antibodies, and the positive ANA. My research seems to indicate that the anti-Smith antibodies are pretty definitive and that she will be diagnosed with lupus as a result, but who knows? We could get in there, and the doc could say that she's got a lot of the symptoms, but it's not conclusive or whatever. I think that's unlikely, but it's possible.

ETA So I looked back at her labs, and she has the anti-DNA antibodies, not the Smith's, but they are given the same weight as diagnostic criteria. I actually found what I was looking for: here's the current diagnostic criteria and the weight given to each item. As far as this chart goes, Emma has the positive ANA (going back to 2018); she has the anti-DNA worth 6 points and then nothing else on the chart. So I guess there is actually a real possibility she won't be diagnosed with lupus after all. She would need to test positive for some of those other proteins and/or antibodies, which I assume is what the rheumatologist will do. Damn. End ETA

On that list, I have the positive ANA, oral ulcers, arthritis, and I wonder if what is going on with my chest and breathing right now is serositis. I had a chest X-Ray done that was clear, no pneumonia, but I'm having trouble telling if pleurisy would show up on an X-Ray. I think my research is telling me that I could have pleurisy without fluid, and that wouldn't show up on an X-Ray, and it's also telling me that I could have pericarditis that also wouldn't necessarily show up on an X-Ray (both forms of serositis). My chest burns and I feel like I can't breathe very well; I also have shoulder pain (which to be fair, I think could stem from when my lymph nodes were so painfully swollen that I had to move and hold myself oddly, essentially throwing my shoulder out of whack). My chest pain isn't sharp and stabbing, but I do see that some people with pleurisy describe it as similar to what I am feeling. Does anybody know if my understanding of pleurisy as described here is correct?

Here's the dilemma: should I go ahead and try to see the rheumatologist now or wait until Emma gets a diagnosis?

I don't want to prejudice her against Emma. I don't want to go and have her dismiss me and me get upset or me assert myself or try to advocate and that piss her off and then color her treatment of Emma, even unconsciously. I also wonder if Emma having a positive diagnosis would make her more likely to accept that something rheumatological is happening to me and more likely to try to treat me (as my neuro has done; I don't have a neurological diagnosis, but he is treating my symptoms on the supposition that something neurological is probably wrong with me). That checklist doesn't mention family history of lupus as being a consideration in diagnosis so IDK.

Should I wait to see what this infectious disease doctor has to say (assuming that it's not a million years before I actually get an appointment)? Am I just muddying the waters by trying to see a billion docs at once?

But I wonder if I should go to the rheumatologist now while my chest still bothers me because OMG do I hope it is still not bothering me three months from now. Will my report of having felt the sensation of pleurisy be adequate if I am not still feeling it at that time?

What would you do (while remembering that my main priority is my daughter's health and seeing that she receives the best care)?