“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!

DIY Feeding Therapy, what?

So, maybe Instagram sent you here, maybe this post sent you here (about my struggles with eating), or maybe you just stumbled along, but feel free to read on and check out how I put a DIY spin on Feeding Therapy.

I met a new gastrointestinal (GI) doctor early this year, and she’s awesome, she’s exactly the person I needed on my team. During one of our early visits, she recommended I see an Occupational Therapist, Feeding Therapist or Nutritionist to work on eating. Now, when she said I laughed because I am studying Occupational Therapy and I work with kiddos and coworkers who have taught me so much about feeding therapy. But feeding therapy for me? No way was I going to do that! It felt so undermining for her to even suggest that. The weeks following that appointment, I was asked to keep a food & weight journal and I realized for the first time how terrible my eating & weight had gotten. When I presented her with my food & weight journal, she gave me my options; feeding therapy or feeding tube. I was so adamant about not having a feeding tube that I started this process of what I’m calling DIY Feeding Therapy. I call it that, because I am doing this with little medical guidance (for now) and I’m not a professional. I’ve been using my knowledge from working in a related field, research I’ve done, books I’ve read, OT’s I’ve talked to, etc, etc, etc.

I started therapy about five months ago, give or take. At that point I was actually doing really well, compared to where I am now, but it still was considered to be Failure to Thrive status. I was consistently getting in about 700-900 calories a day, by mouth, eating a variety of foods, textures, temperatures, etc. From there, I had some major set backs that led me to eating about two foods, one texture and getting in less than 500 calories a day. Anything that strayed from that one texture, or two foods, I was just done trying for the day.

After those set backs is when I got really serious. I went out and bought an electric toothbrush, that was step one. At this point it was just about getting used to stimulation in my mouth, without vomiting. This is something I learned from work, and then through my own research. I felt really silly trying this, it’s something suggested for my toddlers at work, but it helped! From there, I bought gum and lollipops, so not even food, yet. The purpose of the gum was to work on jaw strength, getting my body used to chewing but not swallowing. The lollipops were another idea to get used to having stimulation, without the GI upset of actually consuming food. These were really tricky to start, I kept aspirating, gagging and vomiting but they did eventually help.

The next step, was liquids. I drank water like I was dehydrated camel throughout this whole process, but that was it. I was given a resource, which provides guidelines for introducing new foods to infants. I started slowly thickening tolerated liquids. It’s going, it’s working, but it is still a work in progress! My goal is to tolerate a milkshake, I love milkshakes! Right now I can’t, I’ve tried smoothies and shakes with no luck. It’s just too heavy. One huge self-established milestone I met while working on thickened liquids was drinking through a straw without gagging and aspirating. So I can proudly say I have mastered this toddler skill at twenty years old.

After liquids, comes solid food. This is where I’m at. It doesn’t go much further than this.  One big factor with actual food is to expose myself to it everyday, so I cook, I try not to avoid eating-situations, and I feed snack my kiddos at work — which pushes so many boundaries, have you ever seen a toddler eat, or 10 at once? Talk about exposure!

Everyday, I pack a little lunchbox with a variety of options when I leave the house. I always have my fallback items: applesauce and drinkable yogurt or chocolate milk. I always try to include a lunch item (like a sandwich), fruit, and/or cookies or crackers. I usually don’t eat any of it, which seems foolish. Sometimes I’ll try a bite or two, sometimes I’ll drink a few ounces of yogurt or milk and that’s enough. At least I can say I’m trying!

It’s not an easy or quick process, at times it’s scary, painful, and totally discouraging but I work everyday to push my comfort zones and I’m making progress, so I’m not going to stop anytime soon!

“At some point you just have to let go of what you thought should happen and live in what is happening.”

I wasn’t always open about my struggles; it’s only been about a year and half, give or take, since I started to publicly share that I was dealing with a chronic illness. I always viewed my illness as a weakness — something that made me different and less — but since I’ve gone public with it, I’ve learned it’s much more than that.

One of the biggest obstacles I face is eating, (eye roll). It literally consumes all of me, at all times. It’s not an easy thing to struggle with because it can, and does, affect your entire body. There’s so many components to this, I don’t even know where to start. Basically, I get in under a thousand calories a day, orally, and that’s an overstatement. My gastrointestinal doctor calls this Failure to Thrive Malnutrition. 

The medical side of my eating struggles come from a combination of things. For starters, I have Gastroparesis, meaning the involuntary muscles used throughout my digestive tract are partially paralyzed. What this actually means, is that I am nauseous 24/7, I have intense stomach pain most days and I vomit often. This causes me to have trouble maintaining my weight, blood sugar, and nutrition.

Then there’s the psychological side of it. The psych has two contradicting pieces to it. 1) I struggled with an eating disorder for quite some time as a younger teen. 2) I  have been conditioned to become extremely fearful of eating because every time I do, I have pain, nausea, vomiting, etc. Unfortunately for me, the eating disorder developed way before the inability to eat, so I tend to still struggle with the idea of gaining weight, even though I know I’m currently at an unhealthy weight.

And then, if medical and psychological components isn’t enough craziness for one body, there’s a neurological aspect as well. This is called Sensory Processing Disorder, it’s something I’ve struggled with my entire life but is extremely present when it comes to food & eating. Sensory Processing is a very complex system, but a super basic way to put it: it’s the way your brain processes sensory stimulation, such as taste, smell, touch, movement, etc. This makes it really hard for me because food stimulates so much at once; there’s smells, tastes, visual stimulation, there’s textures, and honestly it’s just overwhelming.  I’m cringing just writing about it. The other neurological struggle I have is that I don’t often feel hunger, so I don’t have the desire to eat. This is more closely related to the Central Nervous System, but loosely related to Sensory Processing Disorder. Interoception is sometimes considered to be the eighth sense, by definition “It is the sense responsible for detecting internal regulation responses, such as respiration, hunger, heart rate, and the need for digestive elimination.” 

I hate it, I hate everything to do with eating. Going to restaurants, parties, even daily lunchtime with coworkers makes me incredibly anxious. Due to this fear and anxiety, I tend to avoid situations and I’ve developed aversions to all food. For a while, I would get sick at the sight or smell of food. I work relentlessly on trying to increase my food intake, but it’s a slow process. Check out my “DIY Feeding Therapy” –> here!

“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.