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?

My Top 6 Favorite Gluten Free Snacks

I am a snacking fiend. I love having something to munch on while I have down time. Unfortunately, being gluten free (and mostly sugar free) seriously limits my snacking possibilities. Luckily, after being gluten free and sugar free for quite some time, I’ve found a few tasty things that are on my diet AND are delicious.

Here is a list of my favorite snacks!

6. Luna & Larry’s Coconut Bliss Ice Cream

Coconut Bliss ice cream bar! Chocolate flavored!

Coconut Bliss ice cream bar! Chocolate flavored!

This stuff is awesome. Since I became sugar free, I kissed the possibility of having ice cream goodbye. Not only is this delicious product is sugar free, it uses agave nectar as a sweetener! No artificial sweeteners or chemicals in here! It’s totally gluten free as well. AND I have good news for you vegan folks. You can eat this!

It has a soft, creamy texture and has bits of coconut in each bar. It melts quickly, but tastes delicious. I definitely recommend it! Fun fact: The company is based right here in Eugene. Very cool!

5. Bumble Bee Sesame Bars

Hazelnut flavored bumble bar. Yummy!

Hazelnut flavored Bumble bar. Yummy!

Its tasty flavor and interesting texture is what sets Bumble Bars apart from other gluten free snack bars. Made almost completely out of sesame seeds, these things are really really yummy! They have a whopping fourteen different flavors ranging from cherry chocolate to hazelnut.

It only has 7 grams of sugar in each one. While that number could be lower, it is fairly decent for a snack bar. Most snack bars range from 15-30 grams in each bar. This makes a great occasional treat that tastes amazing.

The actual bar

This is what the actual bar looks like. Interesting, isn’t it?

4. Nuts

Yes, I know it sounds pretty simple. But nuts are pretty freaking awesome. They have many different health benefits, including healthy brain function, stress reduction, and cholesterol management. Plus, they are gluten free, sugar free, vegan, and dairy free. What a great snack!

Nuts!

Nuts! Photo credit:  Flickr user s58y

Grabbing a small handful of nuts instantly satisfies my hunger and tastes delicious. Cashews are my absolute favorite!

3. Quaker Popped Rice Snacks

Quaker Rice Snacks

Quaker Rice Snacks: Up close and personal!

These little guys are my alternative to the potato chip. With 13 grams of whole grain, they make a great healthy snack. Though they contain no gluten-based ingredients, Quaker does not actually test this product and therefore cannot advertise it as gluten free. Word of warning to my friends with Celiac disease!

2. Nori

A piece of nori

Nori is SO addicting and SO good! If I leave the plastic container next to me, I’ll eat the entire thing! That’s how good it is! Nori is edible dried seaweed that comes from red algae. It is popular in Japan and Korea.

It’s also totally gluten free and has only 1 gram of sugar per box. An addicting snack that is both delicious and guilt-free.

1. Synergy Kombucha with Chia

Me and my favorite kombucha

Me and my favorite kombucha

Kombucha is my favorite beverage of all time. Kombucha is fermented tea mixed with healthy bacteria and yeast. This particular brand, Synergy, of kombucha adds chia seeds to the mix. The texture is amazing and the flavor is delicious. I definitely recommend it.

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

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

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 

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