On Living with Lupus.

This is a post I've been throwing around in my head for months, and after a recent chat with my doctor last week, it's one I've been working on for a few days. I find that I often struggle with explaining just what Lupus does to my body. I know that because the people around me don't experience it the way I do, they can't understand the disease and its impact on my body and life. I'm hoping that by writing this, it'll be a little bit of an education, and perhaps help anyone who bothers reading it understand how a chronic illness works.

As many of you know, I was diagnosed with Lupus in November 2012. I went through a series of tests in the months prior to figure out the cause of a slew of crazy things happening with my body, but the real beginning to it took place when I was only 5 or 6. I have very vague memories of being sick when I was in first grade. From the details I remember, I had a crazy virus that the doctors couldn't figure out-huge stomach cramps, fevers, problems with my eyes-I believe they eventually were considering Kawasaki disease, but I didn't have every single on of the symptoms. Whatever the virus was, it left my immune system in shambles and the doctors warned my mom that severe autoimmune diseased might be in my future.

Fast forward to high school when I was diagnosed with a mild case of rheumatoid arthritis. I thought that would be it, but nope.

In the summer of 2012, I started to have some weird issues popping up-unexplained sores in my mouth and down my throat, chunks of hair falling out, weird rashes on my body, difficulty breathing and fluid build-up in my lungs, feeling completely exhausted even after hours and hours of sleep, problems with my eyes (randomly un-focusing and little sores forming under my eyelids), as well as severe amounts of joint pain-and not just in areas impacted by my RA, but everywhere. I knew something was wrong, so my doctor started testing, referred me to a specialist, and after a few months of blood work, etc, I was "diagnosed" with Lupus. My doctor still considers my case to be "mild" and for that I am grateful.

After my diagnosis, we battled with medication. I never wanted to be a person to be on a pill for the rest of my life, but we finally settled on something that seems to work for me. I get bi-weekly injections of a drug called Humira (I'm sure you see ads for it on TV. Embrel is another injection that works for other people). When my joints get really bad, I go in for steroid injections, which my doctors places right into each joint that aches. I've also been put on stronger steroids for various problems over the last year-mainly fluid build-up in my lungs. I've had a series of respiratory infections and bouts of walking pneumonia, so my lungs are week. I carry an inhaler with me all the time and use it daily (the cold weather is especially harsh on my lungs). We've also considered a drug called Methotrexate, which is commonly used in chemo treatments, but we've held off since my case of Lupus isn't as severe as many others'.

In many ways, I'm very lucky. I've been lucky not to have a lot of unpleasant side-effects (yet...symptoms change as the disease progresses), and I have an excellent doctor. He always makes time to see me, even if it isn't something directly Lupus-related. He has also arranged for me to come in for my Humira injections as opposed to me giving them to myself. I'll be honest and say they hurt pretty bad, so I would chicken out on doing it at home. And while I know Matt would give them to me, I'm not ready for that. But my doctor always makes it a point to sit down and talk to me, and not just about the disease. He cares about my whole self, and he's the one who convinced me to write about my life with the disease.

Most days I feel perfectly fine. I can carry on and feel completely normal. Then I have the in-between days where my lungs are hurting more than normal, I can feel the aching in my joints, and I just want to sit. Then, there are the bad days. Now that we have my meds stabilized, those bad days don't come as often. A bad day usually means I can't go in to work. On some bad days, it takes me twenty minutes just to sit up in bed. My hands usually hurt to the point where I can't grasp things (like my phone or a pen to write, let alone buttoning jeans), and my whole body just hurts. On bad days, I just stay in bed and watch TV, hoping the next day will bring relief.

Last year, as I was battling with the disease and getting it under control, I had a lot of bad days. Some were worse than others. Low points included falling down. There was one night where Matt was in the bathroom and I fell trying to walk in to our bedroom. Matt had to help pick me up and get me to bed. There are a lot of humiliating moments like that, but thankfully he's been there to help me.

When I have a slew of bad and not-so-awesome days together, that's a flare. When I'm flaring, there's usually a lot going on with my body. I break out in rashes across my cheeks (it's called the butterfly rash. Some Lupus patients have it permanently-I only get it in flares, and it disappears). My joints are usually swollen and inflamed. Last year I had to take multiple days off because of these flare-ups and bad days. I've been fortunate to not have to do that this year. The times I've felt bad or been flaring have been over breaks, or I toughed it out until the weekend.

As for how people treat me?

This is probably the hardest thing about Lupus. Like I said, on most days, I feel perfectly fine. I look fine. Even on my in-between days I probably look fine. It's only when I'm really hurting that I look bad. As a friend at work says, I get "glassy-eyed." I think that's her kind way of telling me I look like death. What's hard is that on those in-between days, I'm still hurting. And no one quite seems to get what that means, or how painful it is. I try very hard not to whine when I'm not feeling good, but I'm not sure how good of a job I do.

I think that what bothers me most is when people tell me what I should be doing to feel better. The most common thing I hear is go be active and walk around-then I won't be as tired and I'll "get the joints moving!" And while I can understand the sentiment there...no. That doesn't help. When my joints are inflamed and swollen and it hurts to bend them, the last thing I really want to do is go take a walk.

I also hear that my body would probably be better able to fight the disease if I was in better shape. Don't I know it. You can bet I've heard it from my doctor, my mother, my husband, and myself. I know that losing weight would alleviate some extra pressure off of my joints. And I'm trying. But it is hard to exercise in the midst of bad days. I really wish that advice would stop.

One of the hardest things to deal with is my students. I know that some of my kids know that I get sick every so often, and some have ventured to ask why (more so last year), but this isn't something you pop out and say...and is it their business? I battle with that. Sometimes I really want to finish grading their essays, but just can't hold a pen anymore. It would probably be easier to just tell them, but then it's an excuse, right? I don't know. I don't have answers for that.

The other hard topic is having kids. I was flat-out told by my doctor that while not impossible, it will be very difficult for me to conceive and stay pregnant. That's the nature of Lupus. So my only other pet peeve revolves around people asking....I guess I'm at that age. So many friends and family members are starting families and we're still here.

Don't get me wrong. I have faith. I just don't want the questions.


I will say that in the last year I've learned a lot about myself as a person. I think I am more in tune with my body now than when I was in great shape. I know when I'm pushing myself too hard. I know when I've hit my limit of stress and need to step away. I've balanced work and home life so that I'm not putting too much on myself. I know when I've hit my limit and need to stop.

I've also learned that I'm not going to let things get in my way. I have dreams and I'm going for them. When I'm feeling up to it, I write. And while it might not be any good, I'm doing it. And I read the things that move me in the moments I need them. I hug my husband and tell him I love him. I cuddle on the couch with my cats and they comfort me when I'm feeling awful. I teach my kids at school all the things they need to know about history and literature and writing, but also about how to be a good person, how to love and care for each other. At least I hope I do.

And I just try to push through each day in hopes that I make a difference somewhere.

In many ways...I guess I'm grateful for this. It has redefined who I am in a good way and has given me the push I needed to push myself. I think I have become more passionate about the things I love in the last year: Matt, my family, my "kids," writing, education, literacy, my home....Lupus, while a challenge, has also been a blessing.

I hope I explained myself well. Please let me know if you have questions about anything-the disease, my life, my wonderful husband, anything. I'd be happy to answer.

Weekly Wrap-up for February 16, 2014: Valentine's, Reading, and Meeting Mascha.

This was an incredibly long week considering I wasn't at school on Monday (huge flare-had to go to the doctor for shots) and we had a half day/PD gig on Thursday. It seemed like things were never ending and there was just too much going on! First, I was not feeling well to start the week, and didn't really start to feel like myself until Friday. Then, our cat Sparty had a lump under his chin that seemed to appear overnight (it turned out to be an abscess-he's all better now). THEN, my car was hit by a student in the staff parking lot between our half day of testing in the morning and PD meetings on Thursday (the car and student are fine-it was just a big mess).

So I entered this weekend exhausted and ready for a break. And believe it or not, we have a 4-day weekend for President's Day and our "Mid-winter" break. It seems as if we've had more days off than school (6 snow days post-Christmas break), but I'm not going to complain too much. I needed this little break! I have some things to finish planning so I can get to our Spring Break at the end of March without too much stress.

I am shocked it's mid-February though...where is this year going?

Anyway, a highlight of my week came on Thursday. Matt decided he would rather take me out to dinner then instead of Friday. He had to work Friday and didn't want to go out super late (he generally gets home on the weekends at 7:30/8). So, we went out Thursday to "celebrate" Valentine's Day. We've never been super big for celebrating things like that. I mean, we usually go out to a nice dinner, but that's about it. We don't really exchange gifts or partake in any of that....but he really surprised me on Thursday and I rather liked it. ;) He bought me a beautiful bouquet of flowers-with lilies! My favorite! Then we went and ate at our favorite restaurant in Downtown Rochester and there he surprised me with a beautiful bracelet. I was a bit shocked, since dinner was definitely enough. It's beautiful and I wore it Friday. :)

The kids were also especially cute on Valentine's Day. Since I work in a high school, you can bet there were a million grand gestures of affection going on. Girls walking around with bears, roses, chocolate....you name it. I also loved that quite a few kids bought Valentine's cards and passed them out. I also had way too many heart-shaped cookies and candies. It was a very warm and loving day for everyone involved and I think the kids needed that bit of fun to break up the stress of school.

Since it was such a long and tiring week, I decided I needed some good reads for the weekend. I headed off to the bookstore to pick up a couple of newer releases to keep me company-Grasshopper Jungle by Andrew Smith and Fangirl by Rainbow Rowell. I read books by both authors this summer that I absolutely loved, so I knew I needed to read these (I read Winger and Eleanor and Park). I plopped down on the couch yesterday to settle into Grasshopper Jungle and read it in one long, luxurious sitting. My thoughts will be posted on Thursday. I barely started Fangirl earlier this morning, so I'm going to settle in for a little bit to read more this morning/early afternoon.

Tonight, we have a family dinner at my mom's to meet my brother's girlfriend, Mascha. She's from the Netherlands and is here for a couple of weeks to meet everyone and spend more time with my brother, so it should be a fun meal. :)

I hope you all have a happy reading week!

Reread: Harry Potter and the Sorcerer's Stone.

 “The truth." Dumbledore sighed. "It is a beautiful and terrible thing, and should therefore be treated with great caution.”

I was feeling pretty awful last weekend and Thomas Hardy just wasn't going to do it for me. Instead, I decided I wanted some comfort. After staring at my shelves for all of five minutes, I grabbed this one and settled in to read.

It was the perfect choice for an achy and exhausted me. The story is so familiar that it really does feel like visiting an old friend rather than reading something new. And you might think, that after reading this so many times, that I'd be sick of it.

Nope.

The book still felt fresh and innovative, even after all this time-and movies, and theme parks, and everything in between. I was taken back to my first read and all the rereads of this title and felt a great deal of comfort from Rowling's story.

I think that sometimes, we just need to feel comforted by what we read. And revisiting books that we cherish from our youth is a big part of that. It makes it even more special when you love the book just as much on each reread (if not more so).

I'm not sure I have anything more to say about this that I haven't already said somewhere else. I did spend a lot of my attention focusing on the development of friendships between the 3 main characters, as well as any scene Snape was in (because he has always been my favorite character). I don't think I learned anything new, but rather acknowledged the craft it took to write this.

In any case, I'm pretty positive that I'm going to be rereading the rest of the series in the new future-probably not one right after the other-in hopes of gaining a little inspiration and getting that comfort when I need it.

“Fear of a name increases fear of the thing itself.”

The Classics Club: February Meme Question.

Every month, the folks over at The Classics Club post a question for participants to answer. I'm a huge fan of this month's topic: 

“Dead white guys” are all too often the focus when it comes to discussions of the Western Canon. We’d love to see members highlight classic works or authors that are overlooked in the canon that deserve recognition. Pick one/or more and tell us how their work resonates for our century and/or for you. As always, you determine what is a “classic” in your point of view, including works from 2000+, and works from anywhere in the world. // Or, if you have trouble thinking of an author/work to highlight, you could simply discuss the topic itself: What is “The Western Canon” — have you thought about who/what determines which works are recognized from human history?

This is a complicated question and probably deserves a much more articulate response than what I have to offer, but I'm going to give it a shot anyway-speaking as an English and History teacher.

One of the things I always stress in my History classes is that history is always presented with a bias. There is no way to talk about history without presenting information that may be considered one-sided. Because historians evaluate themes and facts and experiences from things like letters, diaries, etc, there is an inherent bias that you can't ignore. Obviously, an American Revolutionary soldier is going to have one interpretation of the battle and a British General will have another. So, historians evaluate the evidence and come up with a middle ground that explains the battle as whole, pulling in evidence from all members involved.

For textbooks, which are generally considered to be factual and to the point, writers take the general consensus of what happened at an event and compromise it into "factual" information about what happened. This results in the loss of multiple perspectives and a biased read. One of the most common examples of this in American history textbooks has to do with Native Americans. They appear only briefly at the beginning of a textbook, and will only pop up when necessary later on. Much of the "history" concerning Native Americans in U.S. textbooks focuses on the negative-there is little focus on achievements, culture, and history. There are arguments as to why, but it's worth noting that they are glossed over-this is something I always hammer home to my students-to think about what isn't included.

So, how does this connect to literature and this month's question? Much like history is dominated by dead white guys, so is literature. Since dead white guys have formed powerful and influential nations across the globe, they have also created a dominant and aggressive culture. That culture includes those men like Shakespeare, Dickens, etc. It makes sense then, that those authors would dominate the canon-they're part of the ruling class and the dominant culture. And for the most part, they're great works of literature.

But that also leaves out literature from many places across the globe. I'm the first person to admit that I am very westernized. The majority of the literature I read comes from Western culture. I would be hard-pressed to identify classics from other regions of the world. Perhaps that shows my ignorance toward that kind of literature, but it also reflects my education. 

For my English degree, I was only required to take one multicultural literature course-I took Chicano/Chicana lit because of my interest in Mexico's history (I have a specialization in that).

For my history degree, we were required to have 6 credits in each of the following: U.S. History, European History, and the rest of the world. Obviously I needed more than those 18 credits for my degree, but do you see how biased that it? 6 credits (2 courses) in history from the rest of the world? REALLY?

So, it doesn't surprise me that literature and history, especially here in the Western world, it dominated by Western culture and Western authors. And while I try to be as diverse as possible in my reading, it's hard to combat a canon that is established and recognized not only by scholars and lists of great literature, but also by the masses. I hope, that in the future, I will continue to branch out and focus on reading literature from all over the world, as opposed to what I am already comfortable with.

For what it's worth, I have read some great pieces that are not immediately connected to the canon and that I think are well worth your time to read. The first, Ceremony by Leslie Marmon Silko, is a lovely Native American piece that speaks to that disconnect between their culture and mainstream America. I highly recommend it. I would also throw out Things Fall Apart by Chinua Achebe as another great read that's not from mainstream America. I actually have a lot more of Achebe's work on my shelf that I've been meaning to read. The third I'll recommend is by Olive Schriener-The Story of an African Farm. Schriener was a South African writer, but comes at it with a different perspective-it's an interesting book and one that I don't see all that often. 

As you can see, there are definitely holes in my education, but as for those dead white guys, their work is famous for a reason. I will definitely continue reading it and explore my options for books by others as well.

What do you think of this topic? Any books you can recommend me?

Classics Club Spin Number!

So, the number was picked this morning and it looks like I'm reading Native Son by Richard Wright! I'm excited that some of the "less appetizing" options were skipped over in favor of this title. What book will you be reading?