Brain Fooooooooooog

You know what sucks? Brain fog. Brain fog sucks. It’s part of the reason why it’s been so long since I’ve posted something. I keep forgetting. My memory is completely unreliable and I can no longer trust my own brain.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastels, and candlewax on stretched canvas. 2014.

Title: Sofia with Brainfog. Medium: Acrylic paint, oil pastel, and candle wax on stretched canvas. 2014.

I was thinking to myself earlier today, “I wish that I could show people what the heck this is like. It’s such an odd feeling and it’s difficult to explain. How do I depict brainfog?”

I drew a self-portrait with oil pastels, then poured candle wax onto my face. Candle wax is actually a pretty accurate representation of what brainfog is like. It’s this sticky, annoying semi-opaque thing that gets in my way all the time. The art project was actually pretty difficult to do because I currently can’t find any of my wooden pencils or my eraser. It’s hard to do art when you’re incapable of erasing anything. Also, please excuse my shitty art skills, I created it while having brainfog. And I have brain fog as I’m typing this now.

I’m still me, I just have bits of wax stuck in my brain that make it hard for me to do things.

One of the worst parts about this is that I don’t even realize its happening. Only about 12 hours ago did I realize that my brain fog returned about a month ago. It’s all starting to make sense now.

The last four weeks have been a clusterfuck of forgetfulness. I’ve lost like 8 things and keep forgetting to do really important stuff.

About six weeks ago, I bought really expensive tickets to see my favorite band of all time, Modest Mouse. I literally bought the last two tickets to a completely sold out show. I LOST THE TICKETS. I tore through my entire apartment, dug through my trash, had a panic attack, called my parents and made them tear through their house, all for naught. I literally cannot find them. I called the ticket company and asked if I could get them reprinted, to which they said no to. Apparently the tickets are impossible to reproduce. Guess what happened? I MISSED THE SHOW. I never found my tickets and I missed seeing the best band of all time. The show was a week ago and I still cannot find those damn tickets. Thanks, brain fog.

Last week, I realized at 3:30pm that I had an 7 page paper due at 5:00pm that I had not even begun to look at. I had completely forgot about this assignment and didn’t even remember until 3:30pm. Luckily, I was able to beg my professor for an extension and he gave me another week to work on it. But still, I’m forgetting about papers. This isn’t good.

I also lost the key to an important door at school/work. To check out the key, I had to give the worker my ID card. So until I find this key, I don’t have access to my ID card. And I can’t get into the door.

I keep forgetting to respond to important text messages and emails as well. I’ll read them, say to myself, “That’s important. I’ll respond to it later so that I can spend time on what I’m going to say.” Then never respond. To everybody who has been trying to contact me this month and haven’t gotten a reply, I’m sorry. Blame it on the brai-ai-ai-ai-ain fog.

I even had to write a note to myself to make this blog post. There’s currently a sticky note on my laptop that reads “Blog Post Idea: Struggling with Brain Fog. I keep losing my shit. Maybe paint something to go along with that.”

 

In the mean time, lots of detoxing!!!!! Detooooooooooooox.

Best,
Sofia ❤

 

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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?

Ticks are actually teeny tiny vampires. Happy Halloween!

Ticks are actually teeny tiny vampires. Happy Halloween!

Ever curious how ticks are able to burrow inside human skin? Well, in honor of the creepiest day of the year, I present to you a video by the New York Times about how exactly ticks do that mean thing they do.

Happy Halloween, friends! Keep your distance from bloodsuckers- both the vampire kind and the tick kind!

Best,

Sofia

P.S. I’m wearing awesome orange Halloween socks today. Thank you, Aunt Cindy!

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

IDSA Lyme Guidelines Protest in San Francisco Recap

Photo courtesy of Lymedisease.org

Photo courtesy of Lymedisease.org

Yesterday, Lymedisease.org  hosted a widespread rally protesting the IDSA Lyme Guidelines in San Francisco, California. The protest coincided with the IDSA’s annual meeting.

Sadly, I wasn’t able to attend, as I am in Eugene for school and could not make it down to California in time for the protest. I was there in spirit! Also, I was wearing my Lyme Disease Awareness t-shirt, so I’m going to count that.

My mom and dad did go though! They’re wonderful allies. 🙂 From what my mom reported to me, about 100 people came out to the protest. There was a Lymie rapper, various speakers, including former park ranger Jordan Fisher Smith from UNDER OUR SKIN, a stage for protesters to tell their stories, and a truck sporting a gigantic protest sign.

Here’s some pictures!

My mom's sign she took to the protest. The IDSA has it wrong!

My mom’s sign she took to the protest. The IDSA has it wrong! Photo courtesy of my mommy. 

Protesters and their signs. Photo courtesy of Lymedisease.org

Protesters and their signs. Photo courtesy of Lymedisease.org.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN. Photo courtesy of Kai West Photography.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN, speaking at the protest. Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left! Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left with their awesome sign! Photo courtesy of Kai West Photography.

 

It looks like it was a fun day! I really, really, really wish I could have gone! It’s events like this that really helps to spread awareness about Lyme. Though the protest probably did not make a difference in the minds of the IDSA meeting attendees across the street, it’s still important to come together and raise awareness to the passerby. 100 protesters is not exactly a large number and there definitely could have been more, but the important thing to remember is that members of the Lyme community came together to protest something that has affected all of our lives. And that’s really great.

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

Pill Feature: VSL#3 Probiotics

VSL#3 is by far the best probiotic I’ve ever tried. For the past eight months or so, I’ve had various problems with my gut, most likely as a result of being on antibiotics for such an extended period of time.

At my most recent appointment with my LLMD, he gave me a two week sample pack of VSL. He said his office only had samples of the Junior version, which are flavored packets rather than capsules. Each one has 225 billion live units! The most I’ve ever seen in a probiotic is 90 billion.

Image

VSL#3 Sample I Got from my LLMD

The results were absolutely amazing! In less than two weeks, all my gut problems were totally gone! I have no bloating, no indigestion, and no nausea. I’m in love with this stuff.

I’m actually rather glad his office was out of the adult version, because the Junior version tastes fantastic. I usually dread taking pills and supplements because of the bitter taste, but the Stevia-sweetened watermelon flavor of VSL actually makes me look forward to taking it!

I recently saw a coupon for it at Costco, but you can find it at basically any pharmacy. Just go to the VSL website and click the link that says “Find a US Pharmacy”. Type in your ZIP code and voilà! When I bought my refill from Rite-Aid, it was behind the pharmacist counter.

I think this is my favorite thing ever!

Best,

Sofia

My Mantra

A few months ago, Robert Fogarty of Dear World came to my university for a open photo shoot. Robert asks us the question If you were to share one meaningful message with your family, friends, and strangers, what would it be? This portrait is the result of his question. 

"You're stronger than you think."

“You’re stronger than you think.”

You’re stronger than you think. If having a disease like Lyme has taught me anything, it’s that I am stronger than I think I am. I’ve faced an innumerable amount of hardship from this disease, yet here I am, stronger than ever. I chose this message because as we face the struggles that life brings, we often forget our strength. Strength can be pleasantly surprising.

Whenever I am having a particularly bad day or I find myself in a rough patch, I think of this sentence. It becomes a warm, gentle nudge that reminds me of all that I’m capable of. I am always pleasantly surprised.

Best,

Sofia

Hello, world!

My name is Sofia and I would personally like to welcome you to Unfolding Lyme! I’ve had Lyme Disease for a little over five years. It is a complex, difficult, and complicated disease to live with. I have a lot of thoughts about Lyme and I’ve come to the conclusion that a blog would be a good outlet to express them with.  Through this blog, I want to document my experience while also shedding light on the complexity of being a young person with Lyme Disease. Enjoy!

PRSSA

Best,

Sofia