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.

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?

Pill Mountain

Welcome to Sofia’s Pharmacy!

Every once in a while, I like to document how many pills I’ve taken since the start of my health problems. In 2011, before I was even diagnosed, I started keeping all my empty pill bottles. Every time I fill up my weekly pill box, I seem to run out of something I take. That empty bottle goes into a box I keep in my room. This is the result of that box, all neatly organized.

A visual representation of my treatment thus far. These are all the pills I've taken from late 2011-June 2013.

A visual representation of my treatment thus far. These are all the pills I’ve taken from late 2011-June 2013. I couldn’t even get all of them in the picture! 

This is my mini pharmacy. I’ve got everything from empty Penicillin syringes to half-finished oral antibiotics to homeopathic remedies. Basically, if I took it or used it for a health-related reason, it’s here. Some bottles are empty and some are half full.

Here’s a quick scan of everything that’s in this picture, starting from the very back and working my way forward.

  • Lyme Literature
  • Herx and anxiety supplements
  • Pain killer, oral antibiotics and anti-fungal prescriptions
  • Symptom management supplements
  • Vitamins
  • Probiotics and detoxing supplements
  • Rare symptom management supplements, including topical creams
  • Liquid and granulated Stevia
  • Herbal liquid antibiotics
  • Bicillin L-A syringes
  • Pill organizer, eye droppers, liquid medicine measuring cups, and pill cutter

Yep, that’s my collection. Actually, that’s not even all of them. I took this picture in June and my collection has definitely grown since then.

You know, I really wouldn’t have nearly as many pills as I do if I was just tested for Lyme in the very beginning when my symptoms started. But that’s a rant for another day.

I’m planning on creating some sort of art project out of all of them after I’m done with treatment. I’m thinking a giant tick would be interesting. That’s one positive reason to keep my collection growing!

Gotta keep climbing this pill mountain.

Best,

Sofia

Invisible Illness Awareness Week: Why Are You Questioning My Need for a Wheelchair?

Some Wheelchair Users Can Walk

In the blog post above, Beth Griffiths, 20 year old chronically ill beauty blogger, touches on the complexities of being a young, attractive person who uses a wheelchair- and has an invisible illness. She describes how often people question her use of handicapped parking spots even though she can walk.  Continue reading

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