cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
I saw my dermatologist yesterday who, like the allergist, suggested that much of what was going on with my face was rosacea... except the dermatologist said he’s seen it be an issue for his mast cell patients.

Anyway, this doctor is really nice, talkative, enthusiastic about everything, and loves his job (or is really good at faking it). He told us about research he found suggesting that low-dose doxycycline has been beneficial to people with mast cell disorders and other immune issues. (Plus it’s known to help with the rosacea.) But yeah, since it’d be at a really low dose and is pretty harmless compared to other meds (at least from what he knows), I’ll be starting that really soon. I’ll also be continuing on the autoimmune drug (can’t remember the name) until things start to settle down.

During that appointment, I also learned that the skin takes in outside materials (idk I’m bad at words) similarly to digestive organs. I would say more but can’t remember much else, but whatever he said was interesting.

He also gave his opinions on the PICC line, surgery, Xolair, etc., and now I feel a little better about the current decisions. (PICC line, then surgery, then Xolair). Still wish I could research this stuff without getting overwhelmed, though. (Actually, the last few times I’ve researched things, I’ve felt surprisingly ok and in control. I think starting the task is the worst part.)
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
So I might be going to a Holocaust museum in D.C. today!! This will be extremely liberating because I’ll be traveling by metro without a parent and will only be relying on one person!!! Progress?

I just wish it wasn’t so cold outside. Maybe my random heat surges will prove useful. Also, I’m in a decent amount of pain, but it won’t take long to get to the metro, and the museum should be less than 10 minutes away from the stop. They also have wheelchairs and other mobility aids in the museum. I don’t know if I could use them publicly without panicking or coming close to panic, though... but... they’re there. I can use them if I’m desperate (and that would be when the desperation is stronger than the panic of using them).

So yeah, trying to kindle this excitement without getting my hopes up too much!
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
So we finally got to let the cats upstairs today. (We’ve been keeping them in the basement and temporarily in the garage while the basement is being worked on because my mom is scared that she might react to them.) Before then, I would try to spend as much time with them as possible in the basement, but it wasn’t easy because it’s usually a little colder down there, and it’s hard to find decent back support. I usually would end up lying on the tiled floor or rest my head on a cat bed.

Anyway, we finally got to let them upstairs after not seeing them at all for years and then having a hard time seeing them for several more years. It seems like we’re going to work on permanently allowing them upstairs now, which is extremely hard to believe. It feels like something bad has to happen. I think there’s a pretty hard chance of that honestly. But I’m not going to let any more cats be taken away if they don’t need to be. I’ll do better this time.

Pictures of them exploring upstairs to come (hopefully)!

Originally posted on Tumblr.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Today's been better. Still getting that constant vertigo and weird bladder issues, but I've been able to manage. (To be honest, it got to the point where I lightly peed my pants yesterday without warning. It was during a time when the constantly-needing-to-pee feeling was finally leaving me alone for once. That feeling doesn't seem to trustworthy anymore, but I know my body's trying its best.) It's been the most productive day I've had in a while, even though I spent most of the time zoning out. Now that I think of it, I can't really remember what I've done today. I just know that I've checked a lot of items off my to-do list. I'm good with that.

It's only about 11:30PM (which isn't that late to me), and I'm ready to lie down in bed and instantly fall asleep. I've spent much of the past few hours eating and spending time with my family. (Maybe that's why I'm so exhausted.) We didn't have much of a variety, but the food was all really good--at least to me. It's been a while since I've had that much real food. We also picked up some gluten-free bready things from a nearby (meaning an hour away) bakery. I really wish my stomach could hold more of that stuff.

Compared to yesterday and the days before, everything feels a lot clearer, and I think I'm less depressed. At least I could say I'm much more motivated than before. I mean, there's no way I would've been able to get any of this stuff done during the last however many days. Maybe I'll continue to feel this way tomorrow.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Day #29: What has helped you cope with the stress of this lifestyle?

I'll list a few things that come to mind. 

-My cats. They've always given me a reason to keep going, and they're really good at comforting me. It's also nice that they'll come to visit me when I'm lying down when I don't have people who can/will. 

-My partner. I've never been as comfortable around anyone else. He knows me really well, and we've been through some tough times together I didn't think we'd make it through. He's stuck around when he probably should have left. Several years later, he's still with me and understands the whole chronic illness thing surprisingly well. 

-My mom. We usually don't get along too well, and things can be chaotic between us, but she lives with many of the same illnesses. I learn a lot from her, and she plans a lot of my appointments for me because I can't get myself to talk to people. This lifestyle would've been much harder without her.

-Coffee. It seems to help with my pain and therefore makes me more functional.

-Online communities. Knowing others who also live with chronic illness can be comforting and can help me have lower expectations of myself. 

-Food that's easy to get and eat. Do I really have to explain this one?
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
It's been a long hard day, and things between my parents have hit rock-bottom. In the end, things still seemed to turn out okay. I think I've come to a better understanding of my mom and why she doesn't hear many of the things people say. I think she's also been more honest with herself and felt safe enough to admit that it might be something she does. She seems to have many huge signs of ADHD (at least the hyperactive kind), especially since she talked about all the details she naturally notices at once and how she often couldn't focus on the person speaking for long. There's been a long history of her not hearing most of what I (and my dad apparently) have said and assuming I have said something negative. Then she would often accuse me of saying something I didn't say (and sometimes said the opposite of) because of her negative experiences with people in the past. She also has a habit of focusing on at least one other thing while most of the stuff I say goes over her head. More recently I've learned that multitasking might improve her concentration. That makes me feel much better and less ignored to be honest.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Day 28: Name 5 things you have achieved despite your illness.

1. I may be taking a break from school now, but I've been able to take a few classes despite feeling horrible.
 
2. Traveled to a few new places, including New Mexico and Yellowstone. Yes, I've had to do a lot of pacing and felt bad for a good amount of the time, but I'm grateful for the experiences I've had at those places.
 
3. A professor wanted to keep my essay as an example for future students once. 
 
4. I've gotten some letters from a few honor societies even though I've only taken a few classes (probably the reason I got high grades). It's weird because they started sending me them a little while after I started my break from school.
 
5. Pretty sure I've won some rollerblade and foot races when I was little, and I remember having a lot of joint pain back then (though it was periodic).
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
The past few days have been great--probably better than usual. Michael helped me get back on my feet again, and we managed to be somewhat productive. We also got ourselves food, fed and pet the cats, set up the nebulizer (that was mostly him), played Okami, and even went for a walk. I also got some physical therapy done. I have to say I was feeling pretty tired, dizzy, and flu-like after the walk, but I feel much better today. I was afraid it'd be the opposite.

Anyway, I took some pictures while we were out on a walk.
Red and green leaves with a deep light blue sky in the background.A dark grey road path splits off into two different directions. Both paths have trees with yellow, orange, and brown leaves. The right path, which is much wider, leads to a bridge.
Turns out most of the trees had already shed their leaves, though I found a few remaining colorful ones. It's kind of sad that most of the leaves had changed color a little while ago, and I never noticed.

When we got back, we rested, got dinner (and later... cake), and fed the cats. We also hung out with the cats for a bit. Toby got really affectionate and wouldn't stop rubbing his face against Michael's knee. I tried to get some pictures of them as well and didn't have the best luck. I was lucky enough to get a half-decent picture of Toby, though. He looks calm, but in reality, he's squinting because the camera (AKA my phone) flashed in his face. On the bright side, I do think he's (slowly) getting more comfortable!
A side view of an orange tabby cat's face. He's squinting.
cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Looks like it's Mindful Monday. At the very least, I'm hoping to do the mindfulness exercise 7 Cups is giving me today. And since I seem to be doing better mentally, I might try to focus on the moment and keep myself from zoning out like I normally do. I'm not going to aim to be more engaged for the entire day; instead, I'll congratulate myself for returning my awareness to the here and now throughout the day. Even if I only remember to do it once, it's a step up from not doing it at all.

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cathugger: An orange-and-white cat facing to the left. The front of this face is fading into shadows. (Default)
Ashley

June 2017

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