A new name for pseudotumor cerebri; plus, old statuses

I have a friend who is concerned they might have pseudotumor cerebri, except when they told me about it they called it “idiopathic intracranial hypertension,” and that’s how I learned it has a new name! I suffered from this in 2010 and 2011 (and it possibly actually started all the way back in 2007; it’s unclear due to heart medication side effects) and it’s the ultimate reason I got weight loss surgery.

In looking back on my posts on this subject, I discovered that there seem to be a lot of gaps. I didn’t write about the diagnosis at all, as far as I can tell. Blog posts for September, October, and November 2010, the months when I first noticed the problem and started seeing doctors about it, are extremely sparse. So I went back through my oldest Twitter account and my exported posts from my now-deleted Facebook account and pulled together some statuses about my eye. I figured I’d archive them here for my (and my biographers’) convenience. You can check out the pseudotumor cerebi tag for more context.

A vacation!

I took a few days off work and Sean and I went to a cabin in Ellijay, the north Georgia town that hosts the apple festival I go to every year. Not sure if I’ll make it this year, given, you know, coronavirus, so it’s nice to be up here now. The cabin is lovely, just the right size for two, well appointed and cozy. We honestly haven’t done much besides lounge around. Each day has had one “event”: the first day we got hibachi takeout for dinner, the second day we picked up groceries, the third day we took a bath in the big tub, and today I went on a walk around the (very hilly) neighborhood. We leave tomorrow; I wish I’d made this a longer vacation, because I’m finally starting to feel like doing things. I had thought I would at least do some writing, and possibly some photo editing. Oh well! Ultimately the point was to get a break from everything, and I think we’ve accomplished that, at least.

There are more photos at my SmugMug.

The back deck of our rental cabin in Ellijay, from which you can hear the soothing sound of the rushing river hidden beyond the trees

Shelter-in-Place: Day 157

I wish I had posted on Saturday, because I was in a decent mood then. I baked some fig thumbprint cookies using a bunch of figs I got from an online friend who has a huge fig tree in her yard, and they came out pretty well. But I just didn’t get around to posting, and then yesterday I woke up at 4:45 due to anxiety about the situation the US is currently in, and from there I plummeted into a deep depression. I hate to only write when I feel terrible. I need to think to do it more when I’m happy.

Anyway I spent the day watching stuff on Disney+: Treasure Planet, The Mighty Ducks (first film), and DuckTales (2017). I forgot to take my antidepressant at lunchtime, which may have been a factor in my feeling awful all day. However, I am attributing this particular low to stress and anxiety and fear, about basically everything.

I took today off because I’m in no state to accomplish anything.

Shelter-in-Place: Day 138

I was pretty much already awake when my alarm went off. I felt vaguely like staying in bed for a bit, but I also knew I was awake, so I went ahead and got up. I did my full morning routine and sat down at my computer at 7am, thinking I would get some writing done, but so far I’ve just been scrolling Twitter and feeling a little…off. Not sick, but just mentally distant. Like I’ve partially slipped into another dimension, but not completely, so I’m not here but I’m not there either.

This week has been mostly really good, starting with the weekend. I wrote all day Saturday and Sunday and got several stories to a new and fun place. Monday and Tuesday were of course work days, but work was interesting and I accomplished things, and I also did some writing in the mornings and at lunch. In the evenings I relaxed and enjoyed myself. Last night Sean and I watched the extended cut of Ghostbusters (2016) and wow, they should not have edited it down for the theatrical release. It was perfect at its original length. The cameos felt more natural, the story was more cohesive, and overall it was way funnier. I thought it was pretty funny before, but damn.

Yesterday there was some “drama” in my main fandom space, and it bothered me enough to say something. Usually I just try to ignore stuff like that, because it’s almost always driven by personal preferences that aren’t going to change anyway, but I was seeing a lot of piling-on that had nothing to do with the original topic and it was making me mad. I felt that an entire swath of people were being generalized and demonized because they use a certain fandom term. I wrote and deleted-without-posting a snarky comment, and then I wrote something a bit longer and more thoughtful and less douchey.

Whenever stuff like this happens I feel antsy, like I’m just waiting for something terrible, but I think maybe now that it’s the next day it has died down? Here’s hoping.

Some people thrive on this “drama”, but I absolutely hate it. It’s so pointless, creating in-groups based on nothing but personal preference. It’s just an excuse to be hateful to others. I want to explore a bunch of ideas; I don’t want to imply to anyone that there must be a consensus about any idea about entertainment. Yes, it feels very good when someone likes or agrees with your ideas. But that doesn’t mean you and that someone are “right” or that “defending” those ideas by deriding others is a good thing.

Anyway, that’s probably why I’m in this strange sort of fugue this morning. I’m sure my brain will function just fine for work—the fact that I was thinking about and looking forward to work tasks when I woke up is promising—but I hope it will get back to a creative writing state today too. I’ve been enjoying my streak!

Shelter-in-Place: Day 134

I had another low point recently. I was in the middle of it when I wrote my last update on Sunday, and then it got worse. I came out of it on Tuesday the 21st, and this week has actually been pretty good: I got a lot accomplished at work and ended the work week on a high note.

I was telling Sean last night that I’m still not sure if there’s something that kicks these lows off, or if they’re just something that happen to me. I don’t really know what to measure in order to look for a cause. There are so many potential variables: food, my period, how much physical activity I’ve had, stress from work, stress from the state of the world, etc. Just the thought of tracking the depressive periods themselves is daunting; I’ve never been good at maintaining a daily log of anything. (I’m a free spirit!)

This blog has a long archive of my depressive periods; I wondered about them back in 2016 when I hit what seemed to be a permanent low. Things have gotten better since then. I found medication that mostly works and I have a good therapist. But the lows do still come, even if they don’t last as long as they used to. It seems like all I can really do is try to wait them out.

Anyway, I’m feeling better now.

I finished Chihayafuru season 3 and oof. I didn’t realize it would be cliffhangery. It apparently took nearly 6 years for this season to come out, and it ran from last October to this March, so it will probably be some time before we get a resolution, if we get one at all. Maybe that’s for the best, though; I can pretend Chihaya and Taichi and Arata live happily ever after as a triad.

My uncle Steve went to the hospital recently and is now in a care center, working to get well enough to go home. (It’s not coronavirus.) He’s not dying necessarily but he could, so that’s been on my mind. Uncle Steve is Dad’s younger brother, though not the youngest. He and Mom are the same age (they’ll be 72 this year) and they get along really well. They have this cute kind of sibling relationship. So she has been checking in on him and watching over his care, which as a former nurse she is highly qualified to do. Uncle Jeff (the youngest Aubrey boy) is also checking in on him frequently. AJ has been visiting Uncle Steve regularly for a long time now and I’m sure he’ll keep that up. I worry about all this, what with coronavirus, but I also know that Uncle Steve needs people right now. It’s a hard time for him. So while I worry, I’m really glad he has everyone.

As a side note, I really admire how much AJ does for his loved ones. He does what he can to take care of everyone: visits, cooking, organizing parties/camping trips, mowing lawns, and building things (he has some serious carpentry skills). I’m so glad Mom has him to look after the house and yard. I’m also glad he’s such a good example for Connor and Logan and all their friends, and Krystal’s kids too. He’s just good with kids in general. He wasn’t always, but he is now and it’s great to see.

Anyway, aside from all the bad things happening generally and specifically…it was a pretty decent day. I had Shane’s for lunch and sushi for dinner. Can’t go wrong there. I also did a fair bit of writing, which was great, since I’ve been in a bit of a lull since before the depressive period hit. I hope to write more tomorrow, and I think I should probably also get outside some to get some fresh air and vitamin D and hopefully avoid getting down in the dumps. For now, though, bed!

Shelter-in-Place: Day 128

Days seem interminable now. Work is exhausting. Going on virtual walks and playing trivia with coworkers has helped break the tedium a bit. I wish I could have someone come stay with us for a while, just to have a different person around.

I’ve had several days recently where I just could not bring myself to cook dinner. Sean has been very sweet on those days. He is always very sweet, despite my extreme moodiness. I hope if he is feeling bad that he has an outlet. I try to be as sweet as possible to him too.

I’m tired of bras. I am not comfortable going completely bra-less outside the home, but I would love there to be some sort of compromise. Something in the middle that’s supportive enough but not as painful. Like…a half bra. I don’t know. In desperation I bought some of those sticky things that are supposed to hold your boobs up without a bra, but I don’t like them at all. My breasts don’t look right with them on and it hurts to take them off.

Just Shoot Me has gotten kind of obnoxious, with most of the characters being selfish jerks. Usually there needs to be something redeemable about a character for me to care about them. Sean is tired of it too.

I watched the first two Back to the Future movies last weekend and Part III Friday night. I love III, but I was feeling terrible, so really it just sort of averaged out to “meh”.

I’m trying to nip some writing insecurity in the bud by simply…not thinking about it too much, but as I haven’t really had the brainpower to write at all this week, thoughts keep coming back about how I don’t compare to others. There, that’s the thought acknowledged. Now I’m going to let it pass through me and begone.

Playing Wii Sports Resort has been nice. I have totally lost my ability to play Frisbee Dog, which sucks, but my bowling and table tennis games are getting better. Someday I’ll reach my old high scores in all of them…it’ll just take awhile.

I’ve also been playing Zuma again, but I started where I left off years ago, which means I was at a pretty high difficulty level. Yesterday I was in the 9s and I kept losing a certain round over and over again until I was finally out of lives. Sigh. At least I can start from the beginning and work my way back up, I guess.

The third game I’ve been playing a lot is Words with Friends with my mom. I decline all other challengers and I wish I could turn off all the other challenges and whatnot. I just want to play with Mom and that’s it.

For a while there I was playing a game called The Arcana, which is more like a Choose Your Own Adventure book than a game really. It’s lovely and has great music and the story is intriguing, but it’s also very expensive, and so I stopped playing it even though I haven’t seen all the possible storylines. I really can’t justify regularly paying $40 for in-game coins. (You can technically play without using coins at all, but you won’t get to see some of the story paths, and you also won’t be able to collect all the nice picture cards.)

I still haven’t put the LED strips in the china cabinet, but I did frame those three art prints I ordered custom mats for. They look great. I think I will hang them in the office; for now I just have them lying on the guest bed below the wall where they will probably go.

Shelter-in-Place: Day 120

I’ve decided that daily updates aren’t tenable, and trying to hold myself to that standard won’t help anything. Going forward, I’m not going to attempt to post every day, but I am going to try to post regularly, especially when something new happens or I have something in particular to say.

I went through yet another depressive period recently, as you may have seen. I won’t link to it from this post because it’s really not worth looking at. I don’t know if it was related to readjusting to my meds, or if I am just going to keep plummeting into despair every now and then until coronavirus is over…

My tendinitis has backed off, which is great, and I had another lovely walk with coworkers the other day, and yesterday I ate a Double Stuf Oreo for the first time in months. So some nice things have been happening. I also started playing Wii Sports Resort again. It’s been something like eight years? Maybe not that long, but who knows. Anyway, it’s still fun :)

I have two projects to do. First, my custom-cut mat boards came in, so I can hang my Art Nouveau-style Padmé, Leia, and Rey prints. Second, I still haven’t put the LED light strips into the china cabinet. Maybe I’ll get to one or both of these things this weekend.

Lately we have had something of an infestation of fruit flies. Today I realized the middle window in the sunroom has been sitting open a crack (like a few millimeters), and I closed it. Hopefully that was how they were getting in and we won’t see any more of them.

I mentioned before that we needed to get to watching Picard. Well, we did. We binged the whole thing in a couple days. The fifth episode was pretty terrible, and I was starting to get upset, but the ending was fantastic, so on the whole I would say it was a good series. And it’s getting a second season, and Guinan’s going to be in it, so that’s cool.

There’s probably more to say, but I don’t feel like working on this post any longer, so I’ll wrap it up here. The benefits of a personal blog: no need to write formally in any way.

Shelter-in-Place: Day 112

I suppose I should mention that things have reopened even though there is no cure or vaccine for coronavirus. This is because we value “the economy” over human lives and because we can’t make the connection that if everybody dies, there won’t be anyone to work/consume/feed the economy.

The US is hoarding the only medication approved for emergency use for COVID-19, because we are assholes; I imagine the first treatments will go straight to 45’s donors and their friends and families. Some will probably make it to Putin as well.

Some men seem to think it is unmanly to wear a mask in public. Some people regardless of gender seem to think pulling a mask down below one’s nose or mouth still counts as wearing a mask. Many people think “I don’t have it, so I don’t have to wear a mask.” This is partially an issue with selfishness and lack of paying attention but mostly an issue with governments not providing accurate information and guidance.

Governments also haven’t provided what people need to survive, such as additional citizen bailout checks or rent freezes, which means people are forced to go back to work whether they’re sick or not.

I consider myself extremely lucky at this point, as I am still able to work from home and there is no plan as yet for my group to go back to the office. I’m still sheltering in place. This isn’t over, no matter how much people want to believe it is.

Shelter-in-Place: Day 111

Not long after I posted yesterday’s update, I started feeling ill. I ended up quitting work for the day early and going to bed. I did manage to make and eat dinner, but then I went back to bed at around my normal bedtime. This morning I still felt bad so I took a full sick day and slept in as long as I could. Feeling bleh and still icky. Great way to start a holiday weekend.

Shelter-in-Place: Day 110

Wow, okay, I haven’t posted in nearly a month, and haven’t done a true shelter-in-place update in longer than that. Way to go.

First I suppose I should say that I got through that depressive period. I had to physically go to my doctor’s office to get my prescription renewed, but he did it, and after readjusting to it I am doing all right.

It’s been so long since I’ve updated that I’m not sure it would be worth it to go through and list the few details I can pull together for each day (what I ate, anything out of the ordinary that happened). I did completely fill out my refrigerator calendar again:

A whiteboard calendar starting May 10 and ending June 20 with entries color-coded for exercise, food, paycheck, and "special".

Not a whole lot of exercise (reddish pink text) went on in May and June, as you can see. My plan had been to try and watch my way through all of Star Wars chronologically while walking on the treadmill in the mornings, but I only made it through TPM, AotC, the first two episodes of Clone Wars, and the first half hour or so of the Clone Wars movie. Maybe I’ll resume…someday. (Honestly, I am just really not interested in the “wars” part of Star Wars.)

Some nice things that happened during this time: I made cookies twice, I had two days off work for my birthday, I had a virtual birthday party with my work team, I had a virtual game night with my work team, I won three awards at work (and Sean and I celebrated with sushi), I went to the park with Heidi (both wearing masks and staying six feet apart), and I got started back with creative writing. For my birthday, Sean made me Gordon Ramsay style scrambled eggs for breakfast, I got Shane’s for lunch, and we had Outback for dinner with Cheesecake Factory for dessert. I had ribs instead of steak for a change of pace. Everything was awesome.

I don’t put the shows we’re watching on the calendar, but I can report that Sean and I finished watching all of NCIS, which is wild. 17 seasons. After that we went back and finished watching She-Ra, and now we are watching the 90s sitcom Just Shoot Me. We need to get to Picard at some point.

Here’s the calendar as it stands now:

A refrigerator whiteboard calendar starting on June 21 and ending on August 1, with entries color-coded for exercise, food, and paycheck/special

I switched the “special” things from dark purple to green so they would stand out more. One really nice thing that has happened so far is getting a new kitchen faucet. It’s a high-arc pull-down faucet; we had a regular pull-out faucet before. I like how much roomier the sink feels, and the hose is easier to deal with now (it got easily caught on the pipes under the sink before). The faucet got replaced because our old one simply stopped having any water pressure whatsoever, such that it was impossible to even clean the sink out. I thought the repair person would just fix it, but they replaced it instead!

(By the way, when maintenance comes to our apartment, they wear masks and maintain a good distance. It’s not ideal to have someone outside the household come in, but at least they are taking good measures.)

Forgot to write this on the calendar before I took the picture, but I did go on a half-hour walk with members of my work team today, virtually. We did a call-in meeting and walked in our own neighborhoods with our phones. The weather is pretty great today, and it wasn’t too hot yet at 9am, so the walk was lovely.

Another nice thing that happened recently was that on Monday, I decided to fully retract the blinds in the dining room instead of just opening them. It made such a dramatic difference!

A dining room with a table at the center and three tall windows beyond it looking out into a green forest
View of a forest through three tall windows

I’ve been retracting the blinds a lot since then. It’s so refreshing. Last night I had them open at dusk and I saw fireflies!

An unfortunate thing that has happened is that my tendinitis has flared up. It was so bad last week that I had to ask my boss to virtually meet with me so I could dictate an email to her. I’ve been doing my stretching and icing and wearing my braces since then, but it keeps coming and going. I may need to change something else, like how I sit either at my work desk or my personal computer in the living room (or both). Getting an adjustable desk and new chair at work was the main thing that worked the last time this happened…

One last thing before the tendinitis makes it impossible to type: I’ve booked a cabin for a long weekend toward the end of August! I’m hoping this will help refresh me even more…it’s hard to fight feelings of helplessness and pointlessness being trapped at home all the time. Sean and I will go get away from it all and just enjoy being in nature. I plan to try to write, but if my hands/wrists/forearms/elbows are still giving me fits then, I may just force myself not to do anything computer or phone related. I guess we’ll see. Regardless, it will be great to be in a different environment for awhile, and have a break from work!

To make this something close to a proper shelter-in-place update, here’s what’s been going on today:

  • Breakfast: boiled egg, Greek yogurt with frozen blueberries
  • Exercise: 1.12 mile walk from 9 to 9:30
  • Snack: a cup of leftover crab Alfredo
  • Lunch: turkey sandwich with pepper jack cheese, Lay’s chips, and sweet tea


Not having a great time at the moment.

I ran out of my antidepressant on Thursday morning, and I have no idea when my pharmacy is going to refill it. I’m skating around my usual depressive thoughts of “what is even the point of anything?”, wanting to dive into them and indulge in misery but also knowing that it won’t help me.

I feel like I should document stuff but I also don’t feel like documenting stuff. I’m tired and nothing seems worth doing.

That’s it, I guess.

Shelter in Place: Day 77

What a nice day. First of all, it’s Friday. Second of all, several nice things happened today.

I’ve moved my photo-editing laptop out onto the dining table in place of my writing laptop, because I can write just as easily on it, and because I really want to get some photo editing done. I’m years behind on it. My writing laptop can still be used in bed, on the treadmill, or at the kotatsu.

Today I spent my lunch break moving all my latest photos off my phone and camera onto the hard drive, so I’ll be ready to do some editing when the time comes.

After I finished moving photos, I went back to work and made big strides on a task, then led a committee meeting. Then my team gave me a little virtual birthday party! It was just us hanging around on video chat, but it was fun. We talked about the Big Chicken and my boss and I talked about what it was like working for the TV station in Augusta, where we first met.

We hung up around 5:30, just in time for me to get ready for AJ and Connor to arrive. They were on their way to Florida for Connor’s paid summer internship. When they got here I met them at one of the apartment complex’s grilling areas and we social-distanced with masks on. It was so good to see them. We had a nice long talk. I gave AJ his Christmas present, the one that didn’t arrive in time for me to bring it to Kentucky at actual Christmas, and I also gave them a bag of homemade chocolate chip cookies which they devoured immediately (shifting their masks to do so, heh). AJ also brought me back my cooler, which I had forgotten in Kentucky when I went up there for a camping trip in October.

They’re going to try to stay overnight near a beach and actually go to the beach in the morning, being as safe as they can of course. I hope it’s not difficult for them to do so.

After they left I came back to the apartment and sanitized myself and my phone, then made dinner: beef casserole with noodles and rice. It’s a recipe I’ve made before and Sean and I both really liked it. We’re having it with mixed frozen veggies as per usual.

It’s the weekend, and tomorrow’s my birthday! Sean and I plan to get Outback for dinner and Cheesecake Factory for dessert. I’m really excited :)