“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!

Happy May!

 

Happy May!

I should have written this yesterday but as you know, life happens.

The CDC (Centers for Disease Control and Prevention) is recognizing May as Lyme Disease Awareness month. That sounds exciting, no? If you pay close attention you’ll find hundreds, maybe even thousands, of infuriated Lymies and supporters. Why is that?

Lyme Disease is a tricky one. The CDC’s position on Late Stage, or Chronic, Lyme Disease is not very straight forward. They tend to deny the existence of Lyme after treatment, but a direct quote from their website states the opposite, “Although sometimes called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS).”

Now, I cannot get into the whole CDC denial debate because I am one of those infuriated Lymies, however my goal for this post is to educate about Lyme Disease. So without further ado, here are some of the questions I get asked most frequently:

1) Can you only get Lyme Disease in Northeastern US?

It is most common in the Northeast and Midwest regions, there are reported cases in just about every state.


2) If you don’t develop a “bullseye rash”, are you safe?

      The bullseye rash or EM (erythema migrans) rash is the most common symptom associated with Lyme Disease, however not all infected individuals have a bullseye rash nor does a bullseye indicate you definitely have Lyme. Some individuals can even have a rash in a unnoticeable location, such as the scalp. In my experience, and part of the reason I went undiagnosed for so long, I did not have a visual bullseye rash. 


3) I was bit by a tick, do I definitely have Lyme?

NO; Even if you’ve been bit twenty times, you still may not have Lyme. If you remove the tick before it burrows, without causing it to regurgitate, you will likely skate free without Lyme. However, ticks can carry more than Lyme Disease, so if you suspect a tick has bitten you it’s always a good idea to get it checked out.


4) How do I remove a tick from my body?

The tick’s goal, once it bites you, is to attach itself as firmly as possible and fill up on your blood ― it’s gross, I know.

To remove a tick, you want to make sure the entire head and body come out of your skin. It is not a comfortable process, their little teeth are damn sharp. The best way to do this, is to use tweezers, pinch as close to the head as possible, pull up and out.

DO NOT burn the tick while it’s still burrowed in your skin. The old trick to removing a tick is to light a match, blow it out and hold the hot match to the rear of the tick. This will cause the tick to release its chompers, and back out of your skin. However, this will also cause the tick to regurgitate any and all pathogens in its body into your blood stream.

Once the tick is removed, the only ways to kill it, is burning or suffocation. They are indestructible, you can’t drown them or squish them. Often, I keep them in an airtight sandwich bag. If you’ve been bitten and suspect pathogens were released, you can save a tick and have it tested by a local lab to see what pathogens it was carrying.


5) How do you test for Lyme Disease?

Currently, there are no tests that are 100% accurate. The most common, the Western Blot (blood test) is has about a 65% accuracy rate. Likely, if you suspect you have Lyme, a Lyme Literate Medical Doctor (LLMD; certified through ILIADS) will take several blood and urine samples, but treat you based on a clinical criteria.


6) How do you treat Lyme Disease?

There’s no one bullet “cure” for Lyme Disease. If you were recently bit for the first time, you will likely take antibiotics orally for less than a month; the quicker you treat it, the better off you are. If you were bit in the past and went through a period of time undiagnosed, that’s where it gets a bit tricky and treatment options change. You will likely be presented with antibiotics as a first choice, and those might do it for you. Next comes herbal protocols, supplements, etc, etc, etc.

One of the most important things about treating Lyme is not killing the Lyme, but releasing the dead pathogens from your body. When the antibiotics or herbal protocols work, they kill Lyme pathogens, which is a good thing! Often there are so many dead cells during this process, that it becomes toxic to your body. This causes what is known as a Herxheimer Reaction, or herding. Herxing can be a terrible experience for some people, and some do not experience it at all. To reduce or prevent herxing, you need to remove these toxins from your body in the form of detoxing. I’ll write more on herxing and detoxing in a later post because I could go on and on.

No one person responds the same to treatment, some are healed quickly, others take longer. Some choose antibiotics, others choose herbals. There’s no right or wrong way to do it.