I am ridiculously and irrationally afraid of tornados. To the point that I partially selected my college based on which of my options was the least likely to have a tornado. 

I'm assuming this has something to do with the time I slept through a tornado and then woke up to found the house wrecked (windows blown out, things pretty badly damaged) as a kid. 

I also still often have nightmares of tornados. In fact, I had one last night. 

WELL, GUESS WHERE THERE ARE FUCKING TORNADOS RIGHT FUCKING NOW?!?? 
Like 10ish miles away from my house to the north and south, and a few hundred miles to the east.  

I'm done with this. I'm going to take something to make me sleep like the dead and go to bed. Thanks to my precious mountains we don't get tornados where I'm at, so I'm more in danger of having a panic attack than a tornado. My brain knows this, but the rest of me has decided I'm in mortal peril. 

I guess I overdid it yesterday? Today I have a fever of 99.9. I'm also more stiff than usual, and certainly more tired and groggy than usual. 

Today my only tasks are to go to work (done!), and take a nice long shower to try to help my joints. And drink lots of water. 

I'm making some progress on figuring out how much I can do without hurting myself. 

For the first time since my parents visited my inflammation has gone down enough that I don't have a temperature over 99F. Right now it's 98.8, but usually when I'm feeling good it sits at around 97-97.5. 

I've lost 9lbs in total now, and I weigh the least I've weighed for about 10 years. 

Today I plan to:

• Take Exam 1 for White Collar Crime
• Plant my tomatoes in the backyard
• plant my flowers in the pot in the front yard
• set up the automatic watering for the flowers in the front

I'm still booty blasted at my parents accusing me of being lazy. They suck.

Today I cleaned up the back yard a little bit, and filled 3 of Leela's holes. For the first round of yard work I only lasted about 30 minutes, but I cleaned up some dog poop and filled 2 of the holes Leela has dug in her dog run right next to the house. I feel like having holes where water can pool by our foundation is a bad idea. Then I had to recover for about 2ish hours (lame).
I was able to last 45 minutes on the next round (picked up 2 bags of trash, filled Leela's hole where my garden is, and put pavers on top of the holes I filled in the dog run so she wouldn't dig there again). I was definitely moving slower, so that's probably why I lasted a little longer.

That pretty much ended me for the day, and I started having trouble walking. So I took some advil and took a very long bubble bath to see if that would help my joints (it did!)

My bestie also sent me some books that she likes, and I'm really excited to read them. 

This is pretty much all the typing my hands can do right now, so I will go read for a bit.

Today my dad called me and told me to stop procrastinating on all the projects I have around the house, because when they visited the house was a mess from all the projects I need to do. 

1. Fuck you.
2. I'm working full time, getting my master's degree (part-time), and I have a chronic illness that makes me constantly tired and in pain, and will eventually leave me crippled. I'm already doing a lot, so it's fine if my house is messy - I've got a lot of shit going on.
3. My house is still cleaner than theirs.

I literally just found out I'm going to become crippled, and I will be in pain for the rest of my life. Could they just not kick me while I'm already down? Please? 

No matter what I do it will never be good enough. If I vacuum the entire house once a week, I'm told that I should be doing it every day (even though they do it 2 or 3 times a year, max). 
Get my master's degree, like they always told me I should? Get scolded about having too much student debt (how the fuck was I supposed to avoid that? Rob a bank?)

And now they act like I'm just being lazy! How is this lazy? I'm working full time! While going to school part-time! While dealing with non-stop pain and fatigue! And being told that I'm going to be crippled soon! And I still have lung damage from COVID! This is literally more than they have ever had to deal with all at once, and I think I'm doing a great job! I still go to work, I still get A's, and I still force myself to do the stretches that will help delay me being crippled even though I'm tired and they hurt! I'm doing an amazing job at life, work, school, and not letting my illness crush me! 

Now that we're all fully vaccinated, my parents came up to visit us. I am happy to see them, and it's definitely been way too long!

However, they did manage to stress me out enough yesterday that I am having an arthritis flare. I weigh 2lbs less than the day before, am running a fever of 99.8, and my joints hurt so badly I can barely walk. 

So, although I missed them dearly, I am happy they will be going home tomorrow so I can recover a little bit before going to work on Wednesday. I am going to try to hide how shitty I'm feeling because I don't want them to feel guilty. I'm not sure how I'm going to do that while avoiding more stress... but we shall see!

Yesterday I gave in and asked my Rheumatologist what my expectations on pain should be. Should I be expecting to be pain-free with treatment, or is pain-free the (non-attainable) goal that treatment is constantly working towards? 

It's something I needed to ask, and I was pretty sure I knew the answer... but it's not really what I wanted to hear. She said that realistically we will probably be able to reduce the pain in my back, sternum, hips, and knees, as well as reduce the amount of time I have with a fever. However, it is uncommon to be able to get rid of the constant fatigue, and my hands will probably always hurt.

The part that upset me the most is that it's probably not going to be possible to get my hands to stop hurting, and that they are only going to get worse. Most of my joints (but especially the joints in my hands) are hyper-mobile. The joints in my fingers can bend in exciting ways, and often the only thing preventing certain movements is that it stretches the skin to the point that the skin hurts (but the joint never really protests). ASo apparently they aren't just "a bit more flexible than usual" like I always thought, but weird enough to make the rheumatologist look a little freaked out (the doctor tried really hard to hide her horror when I rotated my pinky 120-ish-degrees, but didn't succeed that well). Anyway, so what this means is that apparently even if I didn't develop spondylitis my hands were going to start hurting *eventually*, but that the spondylitis will absolutely make that worse and happen much quicker. So that's lame. 

I also have fucking carpal tunnel on both wrists, and am ordered to sleep with wrist braces for 6-8 weeks. This is further contributing to the hand pain. 

And she said that my disease is "progressing" which sounds super unpleasant, and she has put me on more medication because what I'm taking is not sufficient to control what's going on. I still have "uncontrolled inflammation" primarily affecting my hands and sacroiliac joints, but also occasionally making other joints and tendons go "what the fuck".

So yeah, I'm just really upset about this. I need to type to be able to work. Mobility issues wouldn't be as big a blow as this is. And just... having it confirmed that I'm always going to be in pain for the rest of my life, AND that it's my precious hands that will be hurting the worst.... is not nice. I thought I had a little bit longer than this.