The thing about being sick is…

 

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If you’ve been following me for a while, you know that I have various autoimmune diseases and my body thinks it’s cute to reject medicine and treatments (ugh). I’ve been suffering with these diseases for almost five years now and I still don’t have a concrete medication regimen, haven’t found a treatment that actually works and honestly, I still don’t really know what lupus is, nor do I think I ever will. Although I have a lot more to learn, and I have a long way to go, here are a few things I’ve learned since being diagnosed:

The thing about autoimmune diseases is that you never really understand them. Everything your doctor says will go in one ear and out the other, and then when you go home and Google everything he/she diagnosed you with, you’ll find yourself more confused than when you started. You’ll probably also go on WebMD and re-diagnose yourself with something totally different and off the wall. (To elaborate, I have the WebMD app on my phone and I had a headache today and searched possible diagnoses for headaches and discovered it could be a brain tumor, hemorrhage or blood clot… it’s an addicting, terrible habit). I digress. It’s been nearly five years since my first diagnosis and I still have no idea what anything means. 

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You’ll change medications at least once, twice, three times (you get it…). Autoimmune diseases are tricky, especially when your body begins rejecting any medicine you put in your mouth. When you’re first diagnosed, you have to accept that those pills aren’t the same ones you’ll be on for the rest of your life. It just isn’t that way with autoimmune diseases. I can’t even tell you how many times I’ve changed medicines, doses, treatments, etc.

You’ll be called a “doctor shopper” for seeking second and third opinions on your condition(s). It’s your body, you just want to be absolutely positive your doctor’s tests were correct before beginning treatment, right? I mean, it’s nothing personal. But when you walk into the third doctor’s office for another opinion on your condition and prescribed medications, you have to be prepared to get called out for it.

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You’ll learn to love listening to the music they play when you’re on hold with various doctor’s offices and/or insurance companies. I’ll admit, I still don’t like the music they play over the phone. However, I don’t complain about it anymore, or groan when they announce, “I’m just going to put you on hold for a second. Thank you!” (Side note: “a second” is equivalent to 20 minutes in secretary terms).

Along the same lines, you’ll also learn to love speaking to various doctors, secretaries, operators and the ever-so-dreaded insurance companies. Being sick with autoimmunities, you’re going to speak with a lot of different people whether you want to or not. Some of them will be rude, some will ask you for your name twelve times during the same phone call, they’ll put you on hold and then forget about you, and a lot of them won’t offer you any sympathy. But hey, they’re just doing their jobs.

These are some of the things I’ve picked up over the years. And yesterday as I was sitting at the hospital for three hours (yes three hours), I thought about how long I’ve been living with these diseases and how much they’ve taught me. At my appointment, my doctors reviewed my test results with me and basically everything I listed above happened to me.

The bad news? 

My body isn’t responding well to my medications at all right now. The medication I’m on right now is the last form of oral medication to treat my condition, and since it isn’t working, my doctors are prescribing a new drip line treatment, which I’ll have to go into the hospital every two weeks for a few hours for the rest of my life. Bluntly put by my doctor: It doesn’t get better, it just stabilizes at this condition.

Also, since I’ll be traveling a lot in these next few months, I won’t be able to start this drip line treatment until late November. What does that mean for my health? I have no idea.

The good news?

My medicines aren’t causing me to lose my eyesight, as we had feared! My eyes are just bad because well, everyone in my family has poor eyesight.

I got my new insurance cards so I don’t have to pay for everything out of pocket anymore! (Huge YIPPEE)

I haven’t decided if this is a happy or a sad post, but I hope this helps you better understand what’s going on in my life health-wise. If you’re in a similar condition or have tips or insight into autoimmunities or lupus, or other incurable diseases, please let me in on your wealth of knowledge!

 

Humpday Playlist Pt. 7

Happy Wednesday! I haven’t created a new playlist, but I added a bunch of new songs (like, 50!) to an existing list of songs and I’m really loving the vibe! This is a playlist I listen to when I’m driving, flying or relaxing. Basically whenever I need to calm down and/or clear my brain, I put this playlist on and all my problems melt away. It’s like magic. Enjoy!

 

Café Monday: Lydia Davis favorites

Hey guys, if you didn’t already know, Lydia Davis is by far my most favorite writer (at least, when it comes to prose and free form writing). I spent a lot of time with her collected stories this weekend and I ended up underlining, annotating and highlighting a lot of my favorite sentences from various stories. Hopefully they blow your mind as much as they did mine:

I was too happy to suspect that at any moment my frustrations and disappointments, like a cloud of locusts, would darken the sky and descend on me again. The evening was serene, the light smooth and soft, the earth paralyzed, and I, far below, the only moving creature.

— The House Plans

She was not yet quite finished with crying and raging, but unable to stay there in her apartment, in a place that seemed to contain only her and what had happened and the disappointment of it. 

— What Was Interesting

It occurs to me that I must not know what I am and that others know certain things about me better than I do, though I think I ought to know all there is to know and I proceed as if I do. I have no choice but to continue to proceed as if I know altogether what I am, though I may also try to guess, from time to time, just what it is that others know that I do not know.

— A Friend of Mine

What a relief that would be. I wouldn’t have to think about what I felt all the time, and try to control it, with all its complications and all its consequences. I wouldn’t have to try to feel better all the time

— What I Feel

Hummingbirds make explosions in the dying white flowers — not only the white flowers are dying but old women are falling from branches everywhere. The candles of flowers are out now. The fog is soft, it has no claws, not yet.

— Smoke

 

Why I love blogging (the short answer)

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Hey guys, I’ve recently been thinking about why I love doing what I do. I’ve been asked by a few of you in emails and comments to pick out my favorite things about writing, posting photos, constantly updating this tiny corner on the Internet. And honestly, there are a million things I love about it. But I promised myself I’d keep this list short, otherwise we’d be here all day. Here are some of the many reasons I love blogging:

Self-expression. Simply put, I express myself best through words, prose and research.

I love communication, whether that be via my own words, others’ words, photos, etc. (I’m a communications major, after all!)

Inspiration. I live to inspire others and in the process, I find inspiration in all of you. A lot of you have told me your stories, your secrets, shared your flaws and in trusting me with that, I’ve gained a valuable amount of inspiration to be a better human being.

I love the sound of my fingernails hitting the keyboard because it means that my thoughts are leaving my brain and will soon be entering yours. Comments/emails will come pouring in, and I’ll be able to communicate with the people who make me happy.

Thinking with a “blogger brain” helps me to appreciate life’s little things. While I’m living my day-to-day, I’m constantly brainstorming new blog topics, trying new and different foods because I know it will make a good post, going on more adventures because I know you guys would love to experience it too, and I find myself taking more and more photos to share with you. I gain a lot by striving to create more content for you, because in the process, I’m able to live more and appreciate living.

What do you love about blogging? What keeps you clicking that “New Post” button?

 

Instagrams you should follow

Hey guys, it’s no surprise that I’m a little Instagram-obsessed. But hey, I’m only human. I’ve recently been so obsessed with these four accounts because they’re so, so beautiful. It’s almost painful because some of the photos had to be cropped to fit into Instagram’s photo space. Like, what? Anyway, here are four of the Instagrams I’ve been loving. Check them out!

NewYorkCity — @newyorkcity

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I’ve said it before and I’ll say it again: I love New York City. Liz gets it right when she says in her Instagram description, “New York is not a city, it’s a world.” Every photo taken on this account captures the essence that is New York: busy streets, skyscrapers and coffee, coffee, coffee. I fall in love every time she posts a new photo.

 

Murad Osmann — @muradosmann

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How great is this idea?! Murad travels the world with his beautiful model, and photographs it. I’ve never seen this idea anywhere else, and it works, it’s visually stunning and it tells a story.

 

Mike Theiss — @extremenature

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Mike Theiss is a photographer for National Geographic, I mean, of course. And he has the coolest job on the planet. He gets paid to travel to beautiful places and photograph them. His photos are so gorgeous, and more than wallpaper-worthy, I’m actually thinking about getting a few of his photos printed on canvas to hang in my home!

 

Maci Elise Britt — @thethoughtfulplate

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Maci is one of my favorite bloggers, and she posts the most incredible photos on her blog and Instagram. Her photos inspire me every day to not only take better photos, but lead a better life as well.

Review: Keurig 2.0 K550

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Hey guys! On Tuesday, I came home to a gift from Keurig and I haven’t stopped smiling since! Since I’m an avid coffee drinker and loyal Keurig fan, they were kind enough to send me a complimentary machine to review on my blog. Isn’t that sweet?

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Keurig has been around for a while now, and they’re quickly dominating the beverage world one brew at a time — and for good reason! So what’s the big deal? Why can’t we just buy a simple coffee machine? Why is this single cup nonsense necessary? Well, because it’s 2014 and we’re all about convenience. Keurig machines allow you to make one cup of your favorite beverage, whether it be coffee, tea, hot cocoa or iced tea. And there’s over 250 beverages from over 40 brands to choose from, like Starbucks, Lipton and Snapple.

Before receiving the Keurig 2.0 in the mail, I had the first Keurig. So what’s so special about this new Keurig, you ask? I’ll break it down:

  • It brews single cups and a 30 oz. carafe.
  • Allows you to change the strength of your brew. Want your coffee extra strong this morning? No problem. Press a button. Done.
  • The interface is completely upgraded and redesigned. Say goodbye to the simple, poorly pixelated Keurig screen of the past. Say hello to a colored, crisp display.
  • Hot water on demand. And they mean it. It’s unbelievably quick.
  • You know how the original Keurig machine has a blue light in its water reservoir? Well this new machine allows you to change the colors of that light. Totally necessary, right? I think so.
  • Want to make coffee while you’re in the shower? The Keurig 2.0 has an auto brew function, which you can set a time for and voila!
  • The entire machine has a much more sleek and sophisticated appearance, which is what we all look for in appliances, let’s be honest here.

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A huge thank you to Keurig and Influenster for being so kind as to contribute to my caffeine addiction. I know this will go to good use!

Cheers to that!

**I received this product complimentary in exchange for a review on Flux and Flow. All opinions are my own.**

How to be okay with yourself

Hey guys, as I was browsing Tumblr, I came across this wonderful post on how to be okay with yourself. This is so important because throughout life’s ups and downs, we often forget how important we are. I love this list, and I hope it helps you as much as it has helped me.
 

1. Cut your hair every now and then. Fresh starts are always nicer than you think. Who needs split ends anyways.

2. Pick a song you really like. Listen to that song a lot. And I mean a lot. Dance around your room naked to that song, beat the song lifeless till it annoys the hell out of you. Then pick a new song and go through the same process. We all need to really hear music, we need to understand what the song we are listening to is really about.

3. Paint your toes black, make it as perfect as possible. Then, scratch it off. Remember nothing is permanent.

4. Go on a run with your dog. Try to race him and beat him. Realize you can out run many things. Then go back and pet your dog, realize that some things you need to go back for.

5. Decorate a plain backpack. Glue on sparkles, glitter, diamonds, newspaper and magazine clippings, lace & ribbon, anything else that may fancy you. Remember, you don’t have to be the same person you were a minute ago.

6. Buy some pretty lights and string them up in your room. Turn off all the lights except for one when you go to bed. Remember it isn’t always dark and lonely. Change your perspective.

7. Lay outside one night. Breathe in breathe out. Accept that you are only one person and cannot do everything at one time. You can take your time. The creator of the stars you’re looking up at did not do it all in one day. Pace yourself.

8. Get up every morning and stand in front of the mirror. Naked, fully clothed, backwards, upside down, who cares how, just do it. Observe yourself. Notice the wrinkles under your eyes from laughing a lot. Count your freckles. Admire yourself. Then name 3 things you love about yourself. You need to love yourself.

 

Have a beautiful, wonderful, productive Wednesday. I love you guys more than you know.