lunabee34

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



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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)?

1. My 2022 Kokuyo Jibun Techo Biz Diary has arrived!

Yes, this is a planner. For 2022. That I have been stroking daily and adorning with stickers and washi tape and setting up already and brainstorming how to use every bit of its functionality. In my defense, I can start using it in December. Is that an adequate defense? LOL

I can already tell that the monthly calendar pages have squares that are a little too small, and I think that next time I want to try the daily version of this planner rather than the weekly. But on the whole, I am pleased. It's got Gantt charts for every month! I don't have to draw my medicine tracker by hand anymore. It has built in weather trackers and mood trackers. I'm going to use this two-page spread at the beginning that lists all the months across the two pages with the days going down vertically to list one gratitude for each day. It's got all these list pages that I can repurpose; I've put washi tape over the titles, and now they can be anything I want. So far I've got goals for 2022 and my prayer list and my pen test page in the back.

I am wanting to use this more as a journal/record to keep than the way I typically use a planner which is to cross the hell out of to-dos and throw it away when I'm done, so I might get a cheap or free calendar with bigger squares that I can put tasks on if these squares prove too inadequate to list all the stuff I need to list.

2. Emma slipped and fell on her phone and cracked the screen. Now that it is all over (as of yesterday), I can report that it was a nail biter getting her replacement phone to her because I could see that it had been delivered to her dorm, but she wasn't getting the damn phone. Why not? My name was on the package despite us entering her name online and me specifically calling them to confirm that the package had been addressed to her. All is well that ends well, but I have expended a great deal of angst over this situation.

3. A dear real life friend lost her father this week, and I went to the funeral on Thursday. It was outside in a beautiful cemetary, and we could not have ordered better weather from a menu. It was sunny but cool, and everything was green and flowering. I ended up with a sunburn, my chest bright red except for a ring of white where my pearls circled my neck. Her dad had been a tank commander in the National Guard and a volunteer firefigher and an EMT, so an honor guard did the flag hand off and the bell ringing and the fire truck did a last sign off (or call in; I'm not exactly sure what to call it) for her dad that was very moving. It felt very celebratory of a life well lived in service to others and a fitting tribute.

4. And now for the obligatory comment about my health. ( sorta long )

So, keep those candles lit, y'all, and let's see if we can get some real answers about what's going on with me soon.

After my class Wednesday, I watched unmasked students pile into the elevator and decided to take the stairs. I generally take the stairs anyway, but my legs had been hurting me enough that morning that I’d taken the elevator up to class. I realized my mistake one flight down, but at that point I was screwed: I had just as many stairs before me as behind me. Waiting until I could ride the elevator down in contagion-free solitude only occurred to me when I was slowly limping down the rest of the stairs, knuckles white on the bannister, making sure I had both feet on each stair before moving on to the next.

Every time I think I have a handle on what it means to have a chronic condition, the rules change on me, and I’m back to square one.

When I was a kid/teen, my kneecaps would pop out of socket all the time, and eventually that led to tearing of the meniscus and arthritis. So I’ve had moderate to severe knee pain my entire adult life. I am a champion at handling chronic knee pain.

After Fiona was born, I got diagnosed with Hashimoto’s thyroiditis. I didn’t get any treatment for the symptoms (fatigue, night sweats, insomnia) because my thyroid is still functioning, but I did get validation that something is wrong with me. I am a champion at being a mom, wife, and professor while tired. I am a champion at changing clothes three times in the middle of the night.

Next I got diagnosed with celiac. When I went gluten free, symptoms of my other chronic conditions (knee pain and night sweats) were inadvertently alleviated through weight loss. I went through the stages of grief with celiac, but I’m pretty firmly in acceptance now. Every so often I lament not being able to eat something or an experience that is closed to me, but mostly I don’t even think about it. I am a champion at eating gluten free.

Now I’ve got this new thing going on, and y’all. I am not a champion at this one at all.

This is a new kind of fatigue. I thought I was a rock star at being tired and getting shit done anyway. This is epic levels of being tired. I don’t have insomnia anymore. In fact, that was one of the signs for me that Something New had occurred several years ago when I suddenly and abruptly stopped having insomnia and started deeply sleeping through the night. I genuinely do not remember what it feels like to be rested. To have energy.

When I am having a flare up, I hurt. My joints hurt. My muscles hurt. It feels like someone has beaten me up or like I’ve spent all night engaging in heavy manual labor. Even when I’m not having a flare up, I low key feel kinda bad all the time.

And I am having massive problems dealing with all this. I feel really guilty. I feel like a burden. I feel like I’m not pulling my weight. I know I am stressing Josh out. He’s worried about me. I’d be worried about him if the situation were reversed. I feel really afraid of where this is all headed and whether I’m just going to continue to deteriorate. I’m worried I’m never going to get an actual diagnosis and therefore targeted help. I am genuinely grateful to this neuro for his willingness to try things, but he’s got limited options.

I am open to advice here. I don’t really need advice of the take it easy when you can kind because I’m already doing that. More along the lines of how do I not feel guilty and like a burden, how do I process my feelings of knowing I am stressing out my family and worrying them and feeling like I’m not pulling my weight around the house or whatever. How do those of you with chronic conditions talk about these things with your significant others or navigate all these emotions in your families?

1. I received my contributor copy of the McFarland book. My name looks so pretty in the table of contents. LOL I am excited to read the other essays.

2. I saw my neuro yesterday, and I feel pretty good about things. He prescribed a new migraine rescue drug, Nurtec, which costs me zero dollars (with insurance) instead of 900 dollars like that other drug he prescribed last month. We both agreed that what minimal benefit I might be seeing from the monafidil is not worth the expense of monthly visits, so I'm going to stop taking that. He prescribed an arthritis drug to help me with the joint pain I've been experiencing with this flare up; insurance is doing the whole preauth song and dance about it, so I don't have it yet, but hopefully I'll start taking it soon and see some relief.

3. I am still in the middle of the worst flare up I've had since 2020. I haven't really been posting about it because there's only so much still feel like crap I can post before it gets old for all of us, but I am probably going to post about it soon because it's been 25 days now. This is the longest sustained flare up I've ever had.

4. As of today, Emma has a rheumatology appointment for December, and they didn't give me any guff about making the appointment for her (I was kind worried they'd refuse to deal with me since she's not a minor anymore). Hurray!

5. I do not know what the magic is, but my classes are going really well this semester. I just did a short, fun writing exercise based on a picture book called The Mysteries of Harris Burdick. A family friend had given it to Emma ages ago, and she passed it to Fiona. Fiona loves it; she reads it and makes up stories about the pictures. Well, turns out it has a cult following in creative writing workshops as a story prompt generator (my baby, so genius!). I put up one of the images from the book and had them do some group writing based on what they think is happening in the picture; they're going to share their stories next week. Lots of laughing, so I'm looking forward to what they came up with.

You looked me and my daughter in the face and told us both that her arm probably hurt because she's a girl. And girls are anxious. And that makes their arms hurt apparently.

Screw you, pediatric rheumatologist at Children's Hospital in Atlanta. You told me she didn't have RA as if that was the only possibility for her illness and were so dismissive and gave us zero other avenues to follow. You know that autoimmune disorders are like nesting dolls; you know that they are comorbid. You ought to be looking for more than one disorder. Step out of your damn silo!

I am grateful to the pediatric neurologist who discovered her iron deficiency; treating it gave her some relief of symptoms for some time. (Both neuros I have gone to have been great, thinking whole body, outside of their narrow discipline and willing to consider a variety of solutions, etc.)

But the last three years have been hard. Emma and I have both known that something is wrong and been unable to figure out how to get help for her. It's been really frustrating and demoralizing and, for Emma, painful.

I got her a referral to my neurologist and have spent the past month and a half ferrying her to doctor's appointments for testing. We have to wait for a rheumatologist to make the official diagnosis but bloodwork indicates that she has lupus. His nerve conduction tests also show damage to the sensory nerves in her feet, probably stemming from the lupus.

This sucks so hard, but I am so grateful because now we can make a plan to help her feel better. Now she doesn't have to spend any more time being dismissed or disbelieved or shopping around to find the doctor who will help her. She doesn't have to spend the years my mom and I have spent without diagnoses, unable to get any help or treatment, distrusting our experiences because we're girls. With arms. That get anxious. Or whatever.

I am overwhelmed right now and really angry at the doctors who could have figured this out years ago, especially that one in Atlanta. But there's a lot of gratitude mixed in there, too.

1. I got a letter from misbegotten with lots of stickers in it! And I got a book package from executrix with several old issues of Parnassus in it; I've been reading the most delightful article on epigrams. The writer has (appropriately) a nice sense of humor. Oh how I adore academic writing that is not lifeless and impersonal.

2. My neuro prescribed me a migraine rescue drug, finally! It's a long process with him, which I completely understand; he only does one drug at a time so that it's clear where any adverse effects are coming from, and Monday we were finally at the rescue drug stage. Y'all, my insurance will not cover this drug at all, and it's 900 motherfucking dollars for only a small number of doses. So that is a hard no thank you. I have called his office and asked for something else but not heard back yet. Also, now that I'm taking 200 mg of the monafidil he wrote the RX for the 200 mg pills, and the pharmacy has to do the preauthorization thing all over again which is just bullshit. I was approved to take the 100 mg pills, so I don't get it. Also, they cost me 50 cents, so they're not expensive.

3. All spring was a dearth of hummers, but in the last couple weeks they have started to come back, not in the numbers of last year, but at least a few. I love seeing them at the feeders and at the butterfly bushes.

4. We just made the first payment on Emma's fall semester. *cries* Y'all, we are so stupid. I mean, it's going to be fine, but I wish we had done more financial preparation for this. I'm glad we're going to be able to just pay for her education without her having to take out loans; that is a luxury and a privilege that I am deeply grateful for. But also we did a really shit job of saving for this, and it's going to be a financially stressful year (I mean, we could not have predicted totaling the car, the brickwork on the house, or all the medical expenses, but still). Thank goodness for Zel Miller and free tuition. Well, it won't be the first time we do a better job with Fiona than Emma the guinea pig. LOL