I don’t know how you do it.

“I don’t know how you do it.”

I get this phrase from people all the time. And honestly, I don’t really like it.

I start to explain my life to people, how I’m working three “jobs” dedicated to social justice, managing 12-16 credits of school, working my way through my Lyme treatment protocol, and navigating through so much oppression from the medical industrial complex and widespread ableism. When I talk about these things, often times, people tend to, well, sort of freak out.

Photo on 2-19-14 at 3.29 AM

The people who say this to me cannot fathom the life I’m living. They cannot fathom why I’m doing all of the things I do, or the drive I have. They don’t because they haven’t, and may never have to, experience the trauma that I’ve felt. Furthermore, in their attempt at solidarity and acknowledgement of my struggle, these individuals actually alienate me even more.”I don’t know how you do it” makes me feel like a strange creature, a space that is unable to relate to my peers.

But really, I’m no different from you. I also procrastinate. I also binge on Netflix. I also have the problems you have. The only difference is that my experience with problems I face transcended into something bigger and has given me the drive to do something about it.

So don’t tell me that you don’t know how I do it,
Because honestly, I don’t know how I do it either.

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Dementors and Snow

This explains so much

This explains so much

Having a pair of Dementors inside me would explain so much, including why my week was so terrible. These dementors are sucking out all the happiness in me and replacing it with despair. For some reason, everything gets awful around and during my period. My stomach becomes super sensitive, I majorly herx, and I get horrible cramps. The last 3 times I went to the ER was during my period.

This month’s period has been no exception. My limbs have been hurting, my arm and leg muscles are sore, and my joints are upset. Luckily, there’s been no ER this time, but I’m still feeling awful. I’m also really thankful for my boyfriend, who is excellent at distracting me from my pain. This morning, we watched videos of adorable baby sloths. Cute baby animals help quite a bit.

But on top of the two dementors hanging out inside me this week, it has been really, really cold here. This morning it was -6° F. I have never experienced this type of cold and I can say with confidence that I don’t like it. At all. My body doesn’t respond well to the cold. If I go outside without gloves, my hands will hurt for the rest of the day. So the extreme cold hasn’t been doing me any favors.

I can’t deny how pretty the snow is though! It’s fluffy and beautiful. I just appreciate it more inside looking out rather than vice versa.

My snowy campus!

My snowy campus!

Thank goodness for heaters, blankets, and my herxing pills! Hopefully things will get warmer soon.

Best,

Sofia

P.S. How do you all like the new layout?

Dealing with Difficult People: A Rant

Sometimes people just suck. This is one of those times. And it’s also a testament to why being a college student and having Lyme disease is really, really difficult.

How I felt Friday afternoon. Photo courtesy of Lymelight.

How I felt Friday afternoon. Photo courtesy of Lymelight.

My school has some really cool services for people with disabilities. Because my health is so ridiculously unpredictable, I’m signed up to get these sweet services. At the start of every school year, I go to the Accessible Education Center and they write me a letter to give to all of my professors. The letter basically says I have a documented illness, I may miss class sometimes because of it, and the professor needs to be reasonably accommodating.

Now, I haven’t had a major crisis where I miss a bunch of class for a long time, but this letter serves as a safety net, just in case something does happen. The reaction I get from professors really varies. Some are very understanding and are willing to work with me while others outright refuse to be flexible. But, really, most of them just take the letter and say, “Okay. I’ll read this over. Thanks.” Or something along those lines.

One particular professor I have right now enthusiastically said he is very flexible about things like these. We had a 10 minute conversation about it, actually. He kept going on and on about how if I miss class, it would be excused. I thought to myself, “Great! This guy is awesome! This is going to make my life so much easier!” Boy, was I wrong.

Wednesday was a bad day. The kitchen downstairs served orange chicken for lunch. Almost immediately after eating it, I felt horrible. My gut is extremely sensitive because of all the antibiotics I’ve taken in the past 1.5 years, so I have to be really choosy about which things I eat, and which things I don’t. There was something in that darn chicken that made me feel like crawling up under a blanket and never coming out. Needless to say, I was not feeling well enough for class. So I crawled up under that blanket feeling awful and took a nap.

Fast forward to Friday. I’m feeling much better and I go to the class I missed Wednesday, which happened to be the class with the very flexible prof. After lecture, I tell him I missed last time because of my documented illness we discussed last week. I ask him what I missed.

“Well, you missed a quiz on terminology.”

“Is there a way I can make up this quiz?”

“No, there is not.”

Wait, what?? This is supposed to be the flexible one! What’s going on?

“Why is that?” I say, very confused.

“I can’t allow you to make up things that were exclusively done in class. It’s very hard to coordinate something that happened after the fact. Your absence is excused, but the quiz is not.”

Translation: I’m too lazy to do the 45 seconds of work it would take to set up a new time to administer the quiz, so I’m going to say some BS answer, like that retaking the quiz would compromise its integrity.

This is just so unfair. Why should my grades have to suffer because of something I have no control over? I didn’t miss class because I was lazy, I missed because I physically could not go. So now, I have a big fat zero for that quiz because my gut hates me.

So now I really have to go to this class, even if I feel like death. Maybe my “very flexible” prof will see me dying and he’ll finally understand why I didn’t go in the first place.

Rant: over. Thanks for listening. Ignorant people suck.

Sounds about right. Thanks, Calvin & Hobbs.

Sounds about right. Thanks, Calvin & Hobbs.

Best,

Sofia

Getting Settled In: Back to School

I moved this week! After spending a very relaxing summer with my parents in Sacramento, CA, I headed back to Eugene, OR to start my junior year at the University of Oregon.

My new place is just great. It’s a cross between an apartment and a dorm. I have a studio apartment, but I also have a meal plan. So there’s a kitchen downstairs with chefs that makes all the residents their meals, while my apartment is upstairs. It’s across the street from school, which is really convenient. Since I don’t have enough energy to cook and clean for myself, this set-up is absolutely perfect!

My room is a little small, but I decorated it with some cute things that make it a lot cozier. Plus, I don’t have any roommates! I love this! I don’t have to worry about uninvited guests or somebody who doesn’t understand my situation. I get this space all to myself. Also, I never have to shut the door when I go pee. This is fantastic!

My herx station. Comfy recliner, a squishy pillow, a soft blanket, and a cup of tea. Perfect space for a bad day.

My herx area. Comfy recliner, a squishy pillow, a soft blanket, and a cup of tea. Perfect space for a bad day.

I personally spoke to the chef downstairs about my diet. I was worried the kitchen wouldn’t be able to handle somebody who is sugar free, gluten free, and limits starches- among other limitations. I know it can be confusing. The chef was very kind and said she’s more than willing to accommodate my diet. Tonight for dinner, I had brown and wild rice, grilled chicken, cooked peas, and salad. Great meal!

School starts up again tomorrow. I’m signed up for some interesting classes and I’m looking forward to an interesting quarter. I think this apartment will be a key part of my success!

Best,

Sofia