“People have a hard time letting go of their suffering. Out of fear of the unknown, they prefer suffering that is familiar.” – Thich Nhat Hanh

Post-surgery, my goal was to become more consistent with posting but it’s gotten pretty crazy around here. I’ve been hesitant to share what’s going on, but I guess I’m as ready as ever.

Don’t get me wrong – things are going pretty well around here! It is drastically different; this time last year, I could barely leave the house, I was sick & afraid; nowadays I’m discovering my passions and chasing my dreams. For now, that means working 60-hour weeks & pursuing a Master’s Degree. I am fortunate that my body is ready to handle this kind of crazy, but honestly most days I am just surviving this insane routine. Leaving home at 6:30 am & not returning until 10:30 in the evening means I’m often cutting infusions & feeds short or forgetting them all together.

Last week I got news that completely stopped me in my tracks. I have been incredibly hesitant to share this because there’s still lots of unanswered questions. Through all this craziness, I still have to keep up with my health & medical appointments. Since having surgery just one month ago, my doctors have been working very closely together to help me get back on track. However, at an appointment last week they talked about stopping treatment completely. *To give you some comparison, in the same appointment I was told to stop exercising because my body can’t handle it. How does that make sense? How am I too sick for something that keeps me sane, but apparently not sick enough to continue treatment to get well?

You would think this news would be positive & exciting, but I am just terrified. I was totally caught off guard. A long time ago, I accepted that I may never stop treatment, so thinking it could happen now is unreal. I started treatment in June of 2012 and it’s been a consistent battle ever since. That being said – over the past several years of illness there has been permanent damage to my body. Going forward, if and when we do stop treatment, I will still have to manage the fact that the hearing I’ve lost will not come back, my body’s ability to manage eating will still be affected, the medical PTSD isn’t going anywhere.

I certainly need to digest this a bit more, get my questions answered and see where it takes me, but I’m sure it will be an adventure!


“Strength grows in the moments when you think you cannot go on but you keep going anyway.” – Unknown

Let’s get real, today sucked, it was a struggle. I began the day feeling excited and empowered to take advantage of my only off day — but it didn’t last long. My body and brain were quickly hijacked with nausea and anxious energy. I’ve been dealing with nausea and an anxiety disorder for as long as I can remember, it’s nothing new and certainly not enough to change the course of my day.

I did my morning yoga flow, attempted some breakfast (& failed miserably), slapped on some anti-nausea patches, hopped in my car and started on the highway. Only from there, the world began to turn in on itself. Nausea became relentless vertigo; anxious energy became full-blown panic attacks; air hunger, vomiting and tachycardia joined the party. I pulled my car into the breakdown lane, rested my head on the steering wheel, sobbing and feeling completely helpless.

Now, if you know me personally, you know I have an incredible tolerance for pain and discomfort, and a stubborn complex about admitting I’m in pain or asking for help. But I surely believed in that moment that I was not going to make in off that highway. Most of the symptoms I deal with are tolerable when they happen individually, but on days like today when it’s a smorgasbord of crazy, it becomes utterly terrifying.

I pulled it together enough to get myself off the highway and back home. Boy, was I glad to get out of that car! Once home, — mind you it’s only 8:30 on this lovely Sunday morning — I cancelled my plans and began to succumb to my overwhelming morning, but quickly anticipated where that would take me and tried to overcome it. I couldn’t concentrate, I couldn’t run, I couldn’t meditate, I couldn’t be alone, but also didn’t want to be around people; I was just so uncomfortable. 

After spending a bit of time with essential oils, some tunes and a cool shower,  I did the unthinkable, got back in my car and headed to a local yoga studio. Granted it’s a space I feel comfortable and spend plenty of time, it took an unbelievable amount of willpower  to get myself there. Still being harassed by anxiety and pain, it was the best choice I made all day. Suddenly a wave a relief took over as I mastered a new pose, mudras and breath work.

I didn’t spend my day with friends, I didn’t hike the mountains, or get anything productive done today like I had planned, but at the end of the day I am calm and have a smile on face.

Here it goes…

When someone asks about my illness, they’re usually referring to a diagnosis — like “What do you have?” — but it’s not that simple. What I have is a combination of complicated symptoms, that affect every system in my body, and don’t necessarily fit under one “diagnosis”. Sure, if you asked that question, I could respond with a list of things I’ve been diagnosed with, but again it’s not that simple. Or, I could recant my entire story up until this point and you’d still be wondering, “So, what do you have?”.

Let me clear that up once and for all.

First, it’s important for me to add that I did not receive a diagnosis of any kind until I was sixteen years old. I silently suffered for sixteen years. I saw hundreds of doctors in several states. I was a medical case that nobody wanted because they couldn’t diagnose me. Six days before I graduated from high school, (yes — I graduated at sixteen but that’s a story for another time), I finally received one diagnosis leading me on an entire new journey of healing and discovery. It was unreal. It was equally terrifying and thrilling.

The most powerful factor in my illness is an autoimmune disorder. Basically, my immune system hates me. Just kidding, but it’s a bit confused! The immune system’s job is to produce cells (T-cells and B-cells). These cells bind to antigens (cells responsible for causing an immune response; the bad guys) and the antigens cause the immune system to produce antibodies (these are the warriors; cells responsible for killing viruses, bacteria & bad guys). The problem is, when my immune system recognizes an antigen (when I get a virus or bacteria) and feels the need to produce antibodies, the antibodies don’t attack the virus or bacteria. Instead, the antibodies head north and attack my hypothalamus and brain stem. So not only does the virus or bacteria continue to wreak havoc on my body by burrowing it’s way into my blood stream, but my brain also suffers.  This autoimmune disorder will stick with me throughout my life, but I manage it pretty well.

To make my autoimmune disorder even more complicated, I was bit by a tic when I was four years old. The tic that bit me was carrying Lyme Disease, which is pretty common, but it was also carrying less commonly understood pathogens known as Bartonella, Babesia, and Mycoplasma. These parasites lived in my body, producing autoimmune reactions for twelve years, and continue to do so, as I work to rid my body of these diseases; this is known as Late Stage Lyme Disease. While I went undiagnosed for so long, these pathogens burrowed into every body system; they’re in my brain, they’ve paralyzed my entire GI tract, they’ve altered my breathing and heart rhythm. I’ve been working with one of the best specialists in my state for four years, tearing apart my body, to get these things out. They are tough little fuckers. Nowadays, I’m just about in remission. Due to the nature of Late Stage Lyme Disease and my history of autoimmune disease, it’ll never go away completely.

So at this point in my life, I wish I could say I’ve got it under control, but I still have a long way to go. But, if you were to ask me five years ago where I’d be today, I would’ve told you I’m not going to live past twenty, or even eighteen. I certainly wouldn’t imagine I’d be semi-healthy, living an active lifestyle, working more than full time and happy.

For now, I’ll stop hating my port, I’ll continue my treatment and keep kicking ass.

The Dreaded First Post

Well, hey! I’m Emme, sometimes known as Sunny. I am new at this whole blogging thing, but I guess now is as good a time as any to start, right? I’m not much of a skilled writer, definitely not an extrovert or even technologically savvy, but I am honest, I have a journey I’d like to share and a desire to educate and advocate for those in situations similar to mine. Though some may see my story as an unfortunate rollercoaster or maybe not as bad as it could be (and trust me, at times it’s been both of those things), it’s my story and  it’s dying to get out.
     I’ve tossed around the idea of writing somewhere or somehow, but never knew how, where or when to start. But in all honesty, I still don’t know how or where to begin. I’m assuming it will be a process, I’m sure there will be a few posts that I’ll be embarrassed by later before I get the hang of it. I am feeling vulnerable and excited about finally putting words on a page.
     I have been dealing with a medical illness, and a whole host of lovely side effects (which I’ll get more into later on), for quite some time now. These illnesses have completely changed the my views and the course of my life, I’ve learned more than I could have imagined about myself, relationships, and life in general. Although my illness certainly affects me day-to-day, I refuse to let it define who I am and what I am capable of.
     I’ve met people who have told me “I’ll never be the same” after receiving a diagnosis of their own and starting treatment; it’s entirely true, you will never be the same. People seem to view that as a terrible thing, but for me, I’ve grown so much through this process and I wouldn’t change it. I’ve chosen to take my illness in stride and with humor, because honestly it’s a hell of a lot easier than when I was fighting, angry and sad.
     The thing with rare or complicated illnesses, is that you learn more from those fighting than from doctors. At times, I’ve gotten better information from blogs than I have from my healthcare team. It brings truth to the saying I hear all to often in regards to treatment – “You have to be your own doctor”.
     Thanks for tagging along on this crazy adventure, let’s see where it goes!