“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!


“The comeback is always stronger than the setback”

May is an incredible month. It’s awareness month for pretty much everything; Mental Illness, Lyme Disease, Brain Tumors, Hearing Loss, etc. It’s also the start of Spring here in New England!

We’re halfway through the month, and I have not been able to get my thoughts together. I’ve had thoughts come & go, posts written, drafted & erased, but nothing stuck. I have been doing a bit of in person education and advocacy, so I’m not totally letting the community down! Although May is an incredible month, it has been really tough on me. My health has been all over the place, the semester is coming to an end, I’m moving schools to one halfway across the state, blah, blah, blah — I just haven’t had the mental power to write.

So, while I work on getting my shit together, here’s my May update:

Medically, I’ve regressed a lot. I had surgery earlier this week. Between the prep and now recovery, everything else has been put on hold. I’m only three days post-op so I can’t exactly tell if the surgery helped or made things worse. For now I’m feeling a hell of a lot worse, but I’m blaming it on some post-op complications & measures taken to get over those. I have some appointments towards the end of the month with the local(ish) Feeding & Motility Clinics, which will hopefully provide more answers and relief.

Surgery was really tough on me, mentally & physically. Due to my past history with illness, hospitals etc. I have been diagnosed with medical PTSD, basically anything new or different surrounding anything medical pushes me into a tailspin of panic. I did way better than I expected to in regards to all that, until it came time for the IV placement. I warned them that they would struggle but they sent a student nurse anyways. I was dehydrated, my veins are tiny, deep, they roll & burst and this poor nursing student who got stuck with me had no idea what to expect. He put in five failed lines; FIVE! I nearly lost my shit, so at that point they gave me an intramuscular (needle-into-muscle) dose of sedation. After that terrible experience, they prepped me with Scopolamine patches, another shot of sedation and a couple blood-thinning shots — lots of needles! As they started to administer something into my IV in the operating room, I began to shake convulsively, and from there, everything goes blurry. Fast-forward to post-surgery — I still don’t have any memory of most of this, though. I did not tolerate the anesthesia well, which I kind of expected. I woke up combative, pulled out my IV’s & tubes and had to be restrained. The first thing I remember is them telling me they were going to access my port, (which they should have done in the first place, but not my call), looking down and seeing my hospital dress and entirety of my left arm were caked in blood from pulling out my tubes. They tried to give me pain medication again & again but I guess I kept refusing it. My vitals crashed, I went out again, they gave me a shot in my arm and vitals went up. It went like this for the rest of the evening; I struggled to regulate my temperature, my blood pressure, oxygen levels, etc. but each time I woke up, I would refuse to let them give me anything — which is just like my stubborn self to do!

That’s all almost in the past. My job now is to get stronger, eat & gain weight, basically just get back to where I was beforehand. Due to the kind of surgery I had, certain abdominal muscles had to be cut, so activities like sitting, standing & walking are tricky. Eating & gaining weight will come later on; when there’s trauma to the abdomen, the digestive system is typically the first thing to shut down.

So the rest of May will be slow moving, but busy. I’ve partnered with ILADS and the NE PANS Association to work on advocacy & education— which I am super excited about! But for now, my first goal is to heal & get back to work!

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.