lunabee34 | The week in review

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. So, my GP ran an Epstein Barr panel on me. I tried to get them to run the same panel that had been run a year ago, but when they tried to use the Lapcorp codes my endo used in 2020 those codes didn't work. Lapcorp apparently has overhauled its testing, and so whatever. The GP chose a comparable panel from the menu. The results came back; it's a three panel test, and the names of each of the tests are the same as the names of the three tests I was given in 2020. The value ranges are the same, and the little interpretative chart underneath is the same. The only difference is that this newest test I took has a little key that explains how to interpret the results as a new or a past infection. Well, my endo's nurse calls me and says that based on this test, I don't have an active infection and that this test just indicates that I've had mono in the past. And I said, hold up. First off, this test is that exact same test you gave me in the fall. If I don't have mono now, then I didn't actually have mono then. Also, if all this test is doing is indicating a past infection, why have the numbers changed? The numbers on this latest test are higher (which tracks with how I feel way, way shittier). If this just indicates a past infection, shouldn't the numbers be stable or even decrease a bit as antibodies should only decrease over time rather than get more concentrated? At which point their response was, "Ma'am, this is a Wendy's," and they referred me to an infectious disease specialist. I mean, I'm sympathetic. They're endocrinologists, and this is out of their wheelhouse, and I get it.

I'm not very optimistic that I'm going to get any answers from the infectious disease doctor, though. I spent one very dark day going down the rabbit hole of the internet (which I resolutely will not do again for the sake of my mental health) reading all these discussion boards and articles and etc., and doctors mostly just do not recognize that Epstein Barr can be reactivated and even when they do there's no good treatment protocol for it. Antivirals don't work on it. This has been so hard to explain to my nurse mom who was instantly, "Let's get you some acyclovir or valtrex," and I'm all, "Mom, if those drugs worked on mono, don't you think they'd prescribe them when people get mono the first time? Some kids get mono and are out of school for weeks or months. If antivirals were effective, they'd prescribe them to start with." And then she was all, "I see your earth logic." But those boards are full of people who are in pain and can't work and no one will help them, so that's a bit terrifying.

I mean, IDK what's going on with me now. Either I have chronic Epstein Barr and I'm going to struggle to get any kind of treatment for that, or I never had it and it's something else.

I feel exactly like I did last year except worse. I feel like I have a fever except unlike last year, I never actually do. But I have that hot sick feeling behind my eyes, super exhausted, lots of joint and muscle pain, skin pain (my skin feels like it's been scraped raw). Sometimes my clothes hurt my skin or the pressure of one part of my body touching another part of my body too long or my bare skin touching the fabric of the couch or Fiona touching my leg with her sharp little toes. My lymph nodes on one side swelled up really big in my neck and were very painful. The symptom that bothers me the most though is that my chest hurts, is tight, burns, and it feels like I can't breathe. I've been tested for flu, for COVID, had chest-X rays both times around and there's nothing there.

The pain and the tiredness are things that can be dismissed by docs as me being crazy or whatever, but the fever the first time around is not something I can invent, and the swollen lymph nodes are not something I can invent. I also can't invent my positive ANA blood test or that positive connective tissue disorder (non-specific) blood test on the panel that my neuro does.

So something is wrong with me that is backed up by incontrovertible evidence. I think I have an undiagnosed autoimmune disorder that is causing the Epstein Barr to reactivate, but who knows? Regardless of whether this current thing is Epstein Barr or not, I think I do have an undiagnosed autoimmune disorder that is just making everything worse and that if it could be treated (get that ANA down, in other words the inflammation) then everything else would also calm down. Maybe this infectious disease doc will figure it out. I hit the jackpot with the neuro, so maybe this one will also be a winner.

I am really afraid for myself, though, because I am continuing to see my health and my mobility diminish without a lot of help in sight. The mobic the neuro prescribed has helped with the joint pain. I only have one class in the classroom for spring which will help at that future point. But I'm not going next weekend to Atlanta with Josh and Fiona to see Emma because I know that if I do, I will spend the next week paying for it physically. Which blows, but I have to be realistic. And I can see that I'm just going to have to start forgoing a lot of stuff to keep myself from paying a physical price.

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.