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

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Quick Update: 2AM and not feeling great

This past week has been a rollercoaster of good days and bad days. The first part of the week, I got a raging headache everyday- always in the afternoon. My temples felt like they were going to burst. Sensitivity to light and sound did not help either. The only thing that makes these headaches go away is sleep. Every time I decided to sleep it off, I wouldn’t wake up for hours, sometimes even the next day. That happened 3 times this week.

Weirdly, Thursday and Friday I didn’t get headaches at all! Amazing! Yet, as soon as I thought they were over and done with, they reappeared Saturday and again on Sunday. What’s the deal?!

Also, my hair has been falling out. I’m finding my hair EVERYWHERE- all over my house. My guess is that it’s from stopping antibiotics, which I’ve been off of for almost a month. Last summer when I took a break from antibiotics, this same thing happened. I’m determined not to let it get the best of me though! I’m going to try taking Biotin tablets, which has had some successful results with other Lymies. One more pill to add to the ever-growing list!

Lastly, joint pain again. As always, it’s worst in my hands. The pain makes doing just about anything difficult. I’ve never noticed how much I rely on my hands until it hurts to use them!

This is what I do when I have joint pain in my hands. Lay down and watch Netflix.

This is what about 60% of my life looks life. Bed+ blanket+ Netflix. Currently enjoying Star Trek. 

This is what I do pretty much every time I feel bad. Pop on Netflix and try and relax a bit. Netflix is great. Once you pick out a show to watch, you can sit there for like 3 hours and never have to use your hands! After one episode ends, it automatically cues the next one for you! Perfect for joint pain! And insomnia, too.

I’m pretty sure this is all happening because I’m herxing off of my new herbal, MC-BAR-1. The drops are tasteless and tiny; I guess I underestimate how much they’ll affect me.

Like every herx, this will soon pass. In the mean time, more blankets and tv! Yay!

Best,

Sofia

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

Fun with Smoothies!

Smoothie

I love smoothies! I used to buy them, but the ones from smoothie bars have a lot of added sugar in them. A naturopath I went to for a while suggested I start making nightly smoothies as a way to get more energy and nutrients without eating a full meal. At first I was skeptical, but I’m so glad she gave me this recipe, because I love love love these! They’re light, frothy, healthy, and surprisingly do not taste disgusting! I know the color is kind of yucky, but trust me, they taste good!! Plus! No added sugar! Just natural sweetness from a small amount of fruit. Yummmmmm. 

Ingredients!

  • 2 Cups coconut milk 
  • 3 or 4 ice cubes 
  • 1 Scoop Whey protein powder (The brand I have is BioGenesis, Ultra Pure Vanilla flavored)
  • 1 TBS of greens powder (The brand I have is Vitamineral Green) 
  • 1 TBS coconut oil 
  • 1/2 Cup berry of your choice (I used raspberries) 
  • 1/2 Apple, cut into chunks
  • A handful or two of kale or spinach

Coconut milk and kale! Yay!

Coconut milk and kale! Yay!

Greens Powder, Whey Powder, and Coconut Oil I use

Greens Powder, Whey Powder, and Coconut Oil I use

 

 

Preparation! 

It’s really super easy! Takes about 2 minutes. 

If you use raspberries like I did, make sure you put one on your finger and wear it like a hat. This is 100% necessary if your smoothie is to taste any good

If you use raspberries like I did, make sure you put one on your finger and wear it like a hat. This is 100% necessary if you want your smoothie to taste any good

  1.  Pour your coconut milk into a blender
  2. Add the protein powder, greens powder, coconut oil, and ice cubes 
  3. Add your kale, apples, and berries 
  4. Blend!! 

 

Looks a bit gross, right? Trust me, it's really really not

Looks a bit gross, right? Trust me, it’s really really not

 

See? I told you! Not gross. Really good and smooth. Yum!!!

See? I told you! Not gross. Really good and smooth. Yum!!!

The best part about these is that they’re actually pretty helpful. All the ingredients are super foods and are very beneficial to eat. Blend them all together and you get something pretty tasty. Whenever I make one, I wake up the next day feeling full of energy. 

Hope you like them too! 

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

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