Uncategorized

Oops.

I’ve been really inactive here. There’s a very good reason for it, but I still shouldn’t have let the blog go this long without an update.

My mom has pancreatic cancer. She was diagnosed last August. She’s almost done with chemo now. I’ve been taking her to almost every appointment, chemo and otherwise, for the last 6 months. It’s been a hell of a time. It’s not going to ever get better.

The good news is that I have an appointment with a rheumatologist in 2 weeks. An appointment I had to wait a couple of months for because my doctor…well, my doctor sucks. But I’ll be seeing the rheumatologist soon and that will be good.

As far as books go, I haven’t ready many. I think I’ve only finished 2 books, Good Omens by Neil Gaiman and Terry Pratchett, and Mort by Terry Pratchett. At least, those are the only two I remember finishing. It’s been really hard the last few months for me.

Right now, I’m reading The View from the Cheap Seats by Neil Gaiman, and loving it. I’ve also decided this year is going to be the year for a Lord of the Rings and A Song of Ice and Fire rereads. I’ve already started on The Hobbit. I’m around halfway through. The Hobbit is my purse book and the Neil Gaiman one is my home book, mostly because The Hobbit is like a third of the size of the other one.

I’ll try to update again soon. It’s really shameful how long I went between updates last time. Wish me luck with the rheumatologist!

Symptoms, Thoughts

Bifocals?

So I have this lovely book my boyfriend bought me for our anniversary. It’s the Barnes and Noble Jane Austen collection of seven novels. It’s gorgeous, and it’s perfect for me since I’ve been wanting to read more Jane Austen. The only problem is that the text is tiny, and difficult to read, especially since my eye problems in May.

I tried to use reading glasses by putting them over my regular glasses, but the frame of the reading glasses is too small for my huge head. The reading glasses helped a lot, but it can be painful to try reading with a pair of glasses that’s too small that you’re trying to balance on top of your regular glasses.

So I started talking to my mom about it, and she said I should get bifocals. I don’t want bifocals. I’m 27. I’m too young for bifocals. At least, that’s what I keep feeling even though I know I shouldn’t really feel that way. If I need it, then I need it. I’m still not sold. I’d almost rather still get another pair of reading glasses, maybe bigger ones this time, and use those on top of my regular glasses. I guess I’ll see.

Symptoms, Thoughts, Uncategorized

Sleep Sucks

I’m not sleeping. When I get to sleep “early,” I sleep at 11:30. A normal night is 1:30 or 2 am. Then I have to get up at 7 or so, and start my day. I go through my whole day exhausted, until about 10 pm, at which time I’m practically wide awake and don’t want anything to do with sleep.

I’ve. Tried. Everything.

I’ve stopped drinking caffeine after 4 pm.

I don’t take naps during the day, hoping that will help me sleep.

I get up early to do things, and make sure I keep doing things all day.

And

Nothing

Works.

I’m still not sleeping until around 1:30 or 2 am. I don’t really even know what to do at this point. Even Benadryl, which usually makes me so sleepy I literally cannot stay awake, doesn’t help me sleep. If anything, I actually feel more like crap the next day after taking it.

So, I’m at a loss. And I started googling to see if my exhaustion, and my sleeplessness is related to the ankylosing spondylitis, and found a study that seemed to conclude that fatigue is in fact related to AS. The study was, of course, comprised of all men, so I’m not sure what that means for me. Am I just some strange genetic anomaly? I have AS, but it’s as severe for me as it is for a man, even though I should be better off. My sister had problems with iritis, but never really followed up on anything. It’s possible she suffers from the same stuff, too, but she self-medicates so heavily that maybe it just doesn’t bug her anymore than her hangovers do. So where that leaves me, I don’t know. I feel like I’m in limbo, and it’s still another week before I see my primary care doctor and who knows how long after that before I finally see a rheumatologist. Hopefully it will be a quick referral.

Fingers crossed.

Reviews

Harry Potter and the Cursed Child Review

What can I say about this play? It wasn’t as bad as I thought it would be? Is it okay to say that? I had seen spoilers about this a month or two ago, read them, and went “You have got to be kidding me” because the spoilers read like bad fanfiction. Like awful fanfiction. You know the kind.

In some respects, it really was like bad fanfiction. The villain, for example, was just not fleshed out at all. I have no idea who she is, other than her familial connections (I am trying to avoid big spoilers here, guys). She really just felt like a plot device and not a character. Boring.

Albus and Harry had this thing going on that I didn’t quite understand. Like Albus gets sorted into Slytherin, and everyone’s making fun of him being a Potter in Slytherin, and Harry doesn’t even reassure him? What’s wrong with you, Harry? Why aren’t you telling your son it doesn’t matter if he’s in Slytherin? Why are you (minor spoiler ahead) telling him he needs friends then trying to separate him from his only friend? WHY HARRY WHY?!?!?!

In a lot of ways, Harry’s behavior did feel organic. I didn’t feel like he was terribly out of character because he never had a parental example to learn from (whose parenting is he going to look up to? The Dursleys?). So while I had problems with how Harry acted, well, I’ve been having problems with the way Harry acts since like book 4. Harry can be a stubborn ass and doesn’t always see things from others’ points of view, and that’s just how he is. This isn’t any different when it comes to his son.

To make this short, I hated the plot, and hated the villain. I loved Albus and Scorpius. I did not feel like I wasted my time reading the play, and may read it again sometime, but will probably not buy the collector’s edition that is coming out later or even a physical copy of it. If you like Harry Potter, and you don’t mind going through a bad plot to see lovely characters being lovely, then go ahead and pick it up. If you’re sick and tired of time travel, then try reading something else.

Thoughts

Thoughts on Experiences and How They Shape Us

Waking up every day is like a game of “What’s going to ache today?” It takes me a few minutes every morning to assess my body, my pain levels, and where the pain is coming from. Even if I had an achey shoulder for the last two days, I can wake up with knees that ache today, and a shoulder that feels perfectly fine. The one constant from day to day is my hips. Sometimes they don’t hurt much, sometimes the pain is so bad I’m not sure how to get out of bed in the morning, but there is almost always some pain in my hips.

I’ve been thinking a lot lately about how your environment can determine, to some extent, how you handle a chronic illness. I grew up with two parents who have always had some kind of illness. My dad has reactive arthritis, and my mom has multiple problems because she had cancer twice as a teenager. So I’m used to being around people who maybe can’t do as much. It’s been my life for the last ten years to take care of my little sister as much as possible because my parents can’t do as much. My dad hasn’t been able to drive since before she was born. So when I was diagnosed, I was already prepared to handle it. I immediately started forming a plan, and I knew I could live a rich life even with this diagnosis.

My boyfriend, however, having grown up with two healthy parents, freaked out. He was worried I would eventually go legally blind, like my dad (my dad is only legally blind because the doctors treated him wrong). He’s worried about me being able to walk (apparently, limping through the hospital going slowly so my hip doesn’t lock up doesn’t actually count as walking. I think it’s walking as long as I’m moving forward on my own feet under my own power). He doesn’t know what to do, he doesn’t know how to help, and he is freaking out about me probably being like this for the rest of my life. I realized it scares him so much because he has never really had to deal with this kind of thing before. In my house, illness is constant. Mom has diabetes, high blood pressure, high heart rate, a history of cancer, had 2 separate mastectomies. My dad has glaucoma, is legally blind, often aches in his back and hips. The worst at my boyfriend’s house is his mom’s allergies. He doesn’t know what to do with me.

Realizing this has helped a lot. Now I know I need to explain everything to him. I need to tell him the things I think of as being obvious. And it’s helped. He’s understanding more. And it’s better for us when I can remember to explain things so he understands. I’m not saying that you should always explain everything to everyone; strangers don’t have any right to question you about how you feel or why you’re limping. I do think though that it helps me personally to keep in mind that my boyfriend does need things explained so I don’t assume he knows what I’m going through and that he understands everything without me having to tell him. I won’t be extending this courtesy to everyone, but for him, I don’t mind doing it.

Reviews, Uncategorized, Updates

The Raven King Review

So, it’s been longer than I thought it would be since I was able to work on another review. My life has been crazy busy guys.

I did, however, find time to finish The Raven King by Maggie Stiefvater. I so wanted to love this book because I loved the rest of the series, but I just didn’t. The ending fell flat for me. I felt like there was more that needed to be resolved which wasn’t resolved. I liked that the other books left me with questions about what was going to happen next because I was pretty sure those were questions that were going to be answered in the next book(s). I do not like when a series ends like this, and that’s how I feel this series ended. There should be more closure than I felt I got from this book. And Blue’s kiss….was not how I felt it should have gone. It felt like she had no say in the matter, and she should have been able to have more control but at the same time, there was no time. I understand it, but I damn well didn’t like that that’s how the kiss happened.

So overall rating: 3/5. It was enjoyable, and I finished it pretty quickly, so I know I was invested. The ending just left me so disappointed, I’m not sure if/when I’ll be able to reread the books.

Thoughts

My Initial Thoughts

The iritis specialist I have been seeing has diagnosed me with Ankylosing Spondylitis. It’s kind of scary, to be honest. It’s an autoimmune disease that can cause inflammation pretty much everywhere: hips, back, neck, shoulders, eyes, skin, bowels….it’s a long list. It’s also degenerative, so it will get worse as time goes on. Supposedly, the symptoms are more mild in women. This is not the case for me. My pain is so constant, when the doctors ask me how much pain I’m in, I have to concentrate on my body to see if I’m actually feeling any pain, and my dad has still occasionally told me that I am probably underselling how much pain I actually have. When the pain is really bad, I can’t even get out of bed. Not in a “I’m in so much pain I don’t want to do anything” way, but in a “I can’t even make my body do the necessary movements to actually get out of bed” way.

Thanks to the internet, I’ve found out that I can help control inflammation with a low starch/low sugar diet. I write this with a desk covered in various types of junk food, including Doritos and Chips Ahoy. I’m gonna miss Doritos and Chips Ahoy.

But I want the inflammation to go away. I’m so damned tired of being in pain all the fucking time. It’s old. Even with 800 mg of ibuprofen 3x per day, I’m still in constant pain. That’s not how I want to live.

I think one of the most “fun” symptoms is the pain in my leg that makes my leg fail at walking. Have you ever had that feeling when you step off a curb you didn’t know was there? My legs do that to me, on their own, while walking across a flat surface. Sometimes, it’s so bad I almost fall. It has happened so often, I have a name for it: glitching (this came from me telling my boyfriend that it feels the way a Skyrim glitch looks).

And this has been happening to me almost constantly for 2 years. My doctor initially diagnosed me with sciatica and sent me to physical therapy. She didn’t look into why I might be experiencing sciatica, or why my back would be showing signs of arthritis at 25/26 years old. She told me to lose weight. Yes, being overweight and having an unhealthy diet can make symptoms and inflammation worse. I would think, however, that having a patient show arthritis at a young age would make you consider whether there might be something else at play. I’m not seeing that doctor anymore.