1. Dylan seems to be tolerating the increased dose of hydroxychloroquine without much itching. They are definitely coming out of the flare and feel much better.

2. I will be taking the indomethacin until mid-October for insurance purposes and then getting on a biologic.

3. I got a bill yesterday for the lab work we did for Fi to the tune of nearly 2 grand. I called LabCorp, the pediatrician forgot to put our insurance on the form. So, it's fine, but damn. Between me and Dylan, we've had that same set of labwork like four times this summer. Why is this shit so expensive?

1. I made a new post on Substack about Invisible Illness.

2. amejisuto sent me Patrick Stewart's memoir + some cool postcards. I'm sure some of you will be seeing those soon. :)

3. OMG, y'all. I don't know what's wrong with me. I have been reading omegaverse, and most of it is just terrible--gender essentializing and infantilizing in a way that is deeply unappealing to me, but some of it hits me in the id. I like the unexpected genital combinations and the Pon Farr aspects and really dislike a lot of the more common facets of the trope.

4.

( Stranger Things recs ahoy )

I am not old or fat. (Well, I am, but the doctor doesn't care LOL).

Instead I have ankylosing spondylitis and am starting a different anti-inflammatory med than the one I've been taking. If that doesn't work, then I'm switching to a self-injectable biologic. I got the impression that the doc would really rather just start with the biologic, but insurance has to be shown that the cheaper anti-inflammatories are not effective.

I am so relieved. I'm really sick. It's not in my head. I'm not lazy or making it up. A doctor believed me and found out what is wrong. I am being given treatment.

I am so grateful.

I've been so depressed because I thought I was never going to get help, and I haven't been taking care of myself. Doing so didn't feel like it really mattered if that makes sense. I'm going to take this as an opportunity to make some changes that I know will help with my mental and physical wellness because it feels like it matters now.

Thank you all for your support on this journey.

1. I've been on tenterhooks waiting for my lab results from my initial consult with Dylan's rheumatologist. I will never, ever allow their phlebotomist to stick me ever again. She stuck me five times, including in my hand and down my forearm, and I still am bruised up to hell and back. To add insult to injury, she then refused to stick me anymore and I had to go to an independent LabCorp. That phlebotomist stuck me once and it didn't even hurt. I'll be getting all my lab work done there from now on. I had it done on July 3, and I've been so antsy to get the results but the holiday clearly backed everything up. Anyway, I got the results today, and they are super fucked up! Hooray! I am testing positive for things I did not before on previous tests and on tests I've never taken before. She also sent me for an interminable set of x-rays on my knees and back. I am really hopeful for a diagnosis, but who knows. I've been disappointed before. It looks like the most likely possible diagnoses will be lupus, mixed connective tissue disease, and/or ankylosing spondylitis (hence all the x-rays). We'll see. She might just tell me I'm old and fat. *sigh*

2. ( Stranger Things recs )

1. Dylan has been diagnosed with lupus and given medication. When we got done with the appointment, I sat in the car and cried. It's been so long with no one helping us that I had started to despair that it would ever happen. I'm scared, of course; I don't want my child to have lupus. But this means they can now take medicine to make them feel better, and they can get accommodations at school if they need to because they have a formal diagnosis.

I am also incandescently angry at the first rheumatologist we saw. Dylan's labs are essentially THE SAME as when we saw that doc; she just didn't think Dylan was SICK ENOUGH to do anything about. They could have been getting help all this time.

In the same vein, I've got a routine appointment with my PCP later this summer; I'm going to have her run the same labs she did on Dylan that led to the referral, and if my labs are at similar levels, I'm going to get a referral to the same rheumatologist. I have always firmly believed that Dylan and I have the same issue, just that they started on the path much earlier and much more severely. I couldn't get that awful rheumatologist to take me seriously, but clearly this one will.

I haven't said anything to my parents yet. I guess I will next time we talk, but I don't want to initiate contact with them. I know mom's going to be hurt and sad that I didn't immediately tell her, but I don't want to talk to them.

2. ( spoilers for all of Dragon Prince )

All in all, deeply enjoyable and highly recommended.

1. Yuletide is did! I am so relieved.

2. Colonoscopy went well with good results: no polyps. I also got the results of my antibody test, and they were normal. This means that I am not currently being accidentally glutened. Tom has been much more careful since the last big blow up, and I have been hiding my lunch meat, so clearly that's working.

3. Tumblr has come to the middle school. Fiona started telling me yesterday about how two of her friends are pan and one of them is aroace and several of them are therians. One of her therian friends identifies with an OC animatronic she made up for the Five Nights at Freddy's universe. Y'all, I had no words.

4. Moar Christmas stuff! I got a card from troisoiseaux and a wonderful package of goodies from misbegotten. Thank you both so much!

5. There is no five.

+ We have survived the Great Hargray Internet Outage of 2024. If you were in GA, SC, FL, or AL with Hargray as your internet provider, you were out of internet most of yesterday. Fortunately, it was fixed before bedtime last night.

- I have discovered one of the reasons why I have been having more flare-ups, migraines, and fatigue over the last two months. My FIL has been glutening me--not enough to make me puke but enough to evoke an autoimmune response that has me lowkey feeling like shit all the time. Hurray! He clearly doesn't believe it's something he should be careful about; maybe he even thinks I'm just being precious about it. If an 11 year old can keep me safe, then he is certainly capable. But he doesn't care to. I realized this when I saw him get a piece of pizza and then use the same hand to get the ice scooper; I called him out on it, and he was a jackass about it. Which is another problem. You can't explain the rules to him or call him out on anything without him being a jackass. Josh also gave away his beautiful, expensive, bespoke butcher block cutting board that he got for Christmas because FIL got crumbs all over it. I cried and cried over that one and felt terribly guilty.

Fortunately, Josh is 100% on my side. He reamed his father out and told him he could never speak to me like that again and that he had to follow the rules, etc. To FIL's credit, he apologized to me the next day, and in front of Fiona, but it wasn't long before I saw him about to cross-contaminate the lunch meat again. This time when I told him to get his lunch meat and cheese before his bread, he just did it instead of clapping back at me. But it's clear that when left to his own devices, he just does whatever.

So, I now have my own little stash of lunch meat hidden in the depths of the fridge where he can't find it, and I feel much better physically if not mentally.

+ I just finished rereading the Parasol Protectorate series, which is delightful fun. I wish I had thought to nominate it for Yuletide, but I reread the whole series in a whirlwind last week to prepare for a reading group this week. Steampunk + all the slash, femslash, and het you could want = great fun.

( PP book reviews )

- Objectively, living with FIL is fine. But subjectively, it is really starting to chafe. He is either sitting silently in his chair and completely disinterested in making conversation to the point that he doesn't even look at people when they come in the room (he's always been like this) or in his bedroom napping. It's hard to explain how tiresome it is to be in the company of someone like that day after day after day. And this part makes me feel like a shitheel, but what makes it worse is that he's never expressed a single bit of gratitude, not said thank you one time, for us completely upending our lives and bringing him here. :(

1. Thank you all for your well wishes re: the med change. I am now completely off the Topamax and on the final dosage level of Depakote. I can tell it's going to be a tradeoff. I hurt a lot more on the Depakote, and my sleep is disordered; I think the Topamax was zonking me out at night (the time of day when I took it) and helping me sleep more soundly. Also having lots and lots of bizarre dreams. But this med being much less soporific is also a good thing; I am not as tired during the day. And while it's hard to tell from inside the experience because it's happening gradually, I think the brain fog is lifting. I think I feel more clear-headed. I am still in the adjustment period, so I have hope that my sleep will eventually even out. Now I just have to cross my fingers that my liver and kidneys aren't being affected when I get my blood drawn at the end of this month, and I'll be good to go.

2. Poor Fiona. She's at the very beginning of puberty, and it is hitting her so hard. She is very emotional and clingy. She wants to cuddle with me and lay all over me and plaster herself to me like a barnacle. It's very, very sweet, and she's driving me kind of bonkers. What a terrible problem to have, right? That my child wants to snuggle with me too much. LOL Mostly, it just hurts after awhile because I have skin sensitivity/pain; sometimes the seams of my clothes hurt me or the weight of one leg touching another. Oh, well. I shall survive this love fest. *g*

3. Update on curly hair journey: I am pretty satisfied with my routine at this moment. I continue to try new products, but I've figured out the basics that will work for me.

( hair routine and products )

Tell me about your hair routine and favorite products--any hair texture welcome.

1. Well, I may be zen about the technological difficulties, but my anxiety is playing out as expected in other ways. LOL

So, I went to fill my Nurtec RX a couple weeks ago--this is my migraine rescue drug, not the one that works to prevent me from having them, but the one I take if I get a migraine despite the Topamax--and it was $500 after insurance! Naturally I did not fill it and put it on my calendar to call Blue Cross Blue Shield and be all WTF after I got my class up and running. I don't remember how many times I filled that RX last year, but if it had cost $500 each time, I think I'd have spent at least 2k on it, maybe more. The point of this drug is that you take it the second you feel like you might be getting a migraine, and perhaps you might "waste" a dose. I had to learn this the hard way when I first started taking it because I'd be like, "Well, maybe I'm not getting one. Let's just wait and see. I don't want to waste it." And then inevitably, when it was clear I actually was getting a migraine, it was too late for the drug to work, and I was stuck with a migraine for 3-4 days. Oh, yes. If I get a migraine, it lasts for 3-4 days, always.

I hate calling the insurance. I have spent so many hours of my life on the phone with the insurance, especially after that erroneous bill we got from the hospital when Fiona had pneumonia as a baby. It fills me with existential dread. So I haven't called them yet.

Two days ago, I felt like I might be getting a migraine, but I thought, "Maybe I'm tired. Let's just wait and see." AND GUESS WHAT? I GOT A MIGRAINE! I know that underlying this decision subconsciously was the thought that I only have a few Nurtec left and I don't want to waste them, and I could just kick myself because I feel miserable. :( At least today or tomorrow is the final day of this mess.

2. I got some early birthday presents! The candle I bought with the gift card spikedluv sent me arrived. It's the Savannah candle, and it smells divine. I also got this wallet in gunmetal grey from Josh. My old one is looking pretty shabby.

3. The AC guys put in half the new heat pump yesterday, the half that goes up in the attic. It is so wonderful having skilled tradespeople that can be trusted. They showed us the unit they took out, and it was all corroded and rusted and horrible. *shudders* I am really looking forward to having a lower energy bill.

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?