What Does Courage Mean To You?

Everybody has times when they need to be brave. For some it’s showing up for school every day in the face of bullying. For others, it’s finally walking out on that abusive relationship. And for some, it’s fulfilling the life long dream to sky dive.

For me, courage is putting a fork in my mouth.

When Lyme disease infected my body it left my digestive tract in ruins. I’ve been working to repair it for five years, and have yet to find lasting success. Improvement here and there, but no cure.

The way to understand my digestive tract is to think about electricity. Picture that lamp with the loose wiring. Sometimes when you turn the switch the light comes on. Others times it doesn’t, and other times it comes on after a little jiggling and stomping the floor.

That’s pretty much how it is with my digestion. Sometimes when I eat the food goes down relatively smoothy. Sometimes, it feels like the food just sits there and doesn’t move for hours and I feel so heavy it’s like my whole body is being pulled to the floor by my abdominal area. Sometimes it kind of moves through, leaving stomach aches, nausea and general abdominal discomfort in its wake.

I can eat the exact same lunch two days in a row. One day it will move through without incident, the next it’s a major problem. Same food. Same portions. Completely different results.

This is the mystery I live with. Every meal. Every day. When I eat, will I feel OK afterwards? Or will I be miserable for hours?

No way to know.

This uncertainty has caused me a great deal of anxiety over the years. How could it not? Digestion is supposed to be involuntary. Like breathing. You don’t think about breathing. It just happens. But my digestion doesn’t just happen. And I can tell you when something that’s supposed to just happen doesn’t, it’s very hard to deal with.

My unpredictable digestion would be easier to live with if I were carrying a little extra weight. But I’m not. I am skeletal. I feel like I don’t have an ounce to give. In spite of an intense effort to gain weight the last five years, all I’ve done is lose it. This reality makes it all the more difficult to tolerate the bad digestion days because then in addition to not feeling well, I worry about my weight.

I’ve spent countless hours trying to figure out how to deal with this vicious cycle. Here’s what I’ve figured out:

  1. I’ve tried to let go of the weight concerns. It has taken me years to figure out that’s not the right end game. When I regain my health, I will regain my weight, and not before.
  2. On bad digestion days, I don’t think about how much I’m not able to eat. Instead, I eat smaller portions and try to be as kind to my poor little tummy as I can. I try to understand it can only do what it can do, regardless of how much I’d like it to do.
  3. I’ve stopped weighing myself. Instead, I do the best I can to eat as much as I can every day. My motto is “no calorie left behind”. Sometimes, we will be all done with dinner and everything will be cleaned up and I will think maybe I have room for one more bite of food. And I will find something, and I will eat it. Every bite helps. Every bite is a victory.
  4. I am trying to learn to trust my body. When something that’s supposed to be involuntary isn’t, a trust is broken. It’s a betrayal. One that leaves a long, deep, lasting mark. Truthfully, my body doesn’t give me a lot of reasons to trust, but what other choice do I have?

Lastly, I try to be brave. You see, I’m really worn out on how badly I feel after eating. And I’m worn out on the unpredictability of it all. And some days I think it would be so much easer not to eat at all. 

But that’s not a choice if I plan to continue living.

So, every day I come to the table. And every day I come with my question marks and concerns. Before each meal I say a silent prayer that I may be able to lovingly and graciously accept this food into my body. Then I briefly meditate in order to create a calm internal environment to help my digestion. 

Sometimes all this helps. Sometimes, it doesn’t.

That’s where courage comes in. I can’t always count on my digestion to work, so I always have to count on myself to be brave.

It’s not an easy task.

I Felt Mostly Normal Yesterday, and it Made Me Bitter.

You might find that a curious notion. I did too, so I gave it some thought and figured it out. 

For starters, it’s extremely rare for me to feel mostly normal. Most days I feel some or all of the following: fatigue, nausea, stomach aches, anxiety, general malaise, brain fog, a sick, heavy feeling when I eat.

Yesterday, I had none of those. That almost never happens. Additionally, the sun was out, and my daughter and I had a warm, close, glorious afternoon of lunch and fun little errands. Because I didn’t have any of the above symptoms distracting me, I felt completely alive and present in each moment. I drank it up. I swam in it. It was heaven. I loved it.

So, why the bitterness?

I realized how much I’ve missed these past five years.

Yes, there have been laughter, vacations, holidays, family game nights, random bike rides, birthday celebrations, more laugher, and the general good stuff of life.

But, my chronic lyme disease was an unwelcome participant in every one of those happy moments. I can’t even tell you how may times I’ve gutted through something that was supposed to be enjoyable. 

Yesterday made me realize that playing hurt has become my norm. Yesterday I realized I’ve forgotten what it’s like to experience live without the haze of illness.

I think this helps me understand why people who are close to me sometimes have a harder time accepting my situation than I do. They know what I’m missing. They know what it’s like to live life outside the cage of chronic illness.

To that I would say don’t feel sorry for me. Yesterday’s bitterness aside, I mostly accept what has happened to me. I accept the reality of my life, and I always remember there are people who carry much greater burdens.

I don’t spend a lot of time dwelling on what used to be. Or on what could be. I don’t find either notion helpful.

Instead, I wake up each day determined to just be in it. To accept it for what it is, and to not wish for something different. I do my best to focus my effort and energy on doing the things I need to do to help my body heal. It’s a full time job, and I show up every day.

As I reflect on yesterday, I would say it was 1% bitterness, and 99% joy and gratitude. I said prayers of thanksgiving all afternoon. It just felt so good to feel good, and I savored it.

I knew it wouldn’t last, but I didn’t dwell on that. I drank in the moment. And today, as I sit here not feeling very well, I am not bitter. I am just so glad to have had a good day. That lets me know it’s possible.

I don’t know when the next truly good day will come. Could be tomorrow, could be next month. Could be fall.

But I’m not thinking about that. I am thinking about today. I am going to stand in here with my illness, one day, one moment at a time. Without bitterness, regret or remorse. This is how my life works now, and I’m going to make today as good as it can possibly be.

You cannot stop the waves but you can learn to surf.

Jon Kabat-Zinn

Day Interrupted.

Yesterday my day was going along swimmingly. Until it wasn’t.

I was finally feeling better after enduring four days of severe detox reactions to a lymphatic drainage treatment (see earlier post). It felt good to be back on my feet. I had a low grade headache, but that was nothing compared to what I had been experiencing.

Then, my low grade headache exploded into a screaming migraine in the course of two minutes. Literally. I am no stranger to migraines, but this one was alarming in both onset speed and intensity.

It was 4:00 on a beautiful sunny afternoon, and I had no choice but to drop everything, climb in bed and cover my eyes to keep the painful light out.

Having to drop everything and rest has become a constant in my life. I never know when I will get hit by fatigue, nausea, stomach aches, general malaise… or a migraine. Often, I need to drop everything just as I’m starting to feel forward momentum of some sort. 

This start/stop nature of my life can be very frustrating. But one of the blessings of illness is it forces you to reflect and grow in ways you wouldn’t if you were healthy. I know that sounds airy fairy, but it’s true. Think about it. What a waste to go through an insanely difficult situation and not learn from it. 

I have been “blessed” with countless hours of unwanted down time. And in those hours, I have found ways to rearrange some of the negative thinking they can inspire. “I’m so sick of this, when will it end, this wasn’t how my day was supposed to go, I need to be getting things done, will I ever get well” have been replaced with a more helpful dialogue. Or, more accurately, the lack of a dialogue.

Huh?

Through meditation, I am learning to be in the present moment, without creating a story about it. Just writing those things above made me feel stressed. And not one of those thoughts does anything to improve my situation when I’m not feeling well. Actually, they tend to make it worse.

As such, I try to face each difficulty with a quiet mind. What is the point of ruminating on something I have no control over? I try to tell myself that in this moment, my reality includes rest (pain, discomfort, anxiety, etc.) and nothing else.

It sounds so simple, but it’s very difficult to do. Our minds want to think. They want to create stories about whatever is going on. More often than not, this thinking and these stories lead to suffering.

There is a great saying that in life pain is unavoidable, but suffering is optional. In today’s case, my migraine represents physical pain. I can’t do anything about that. Any negative thoughts I have about the headache represent suffering. I CAN do something about that.

Frustrating as it was to have to drop out of my life in the midst of a pleasant afternoon, I did just that. Without regret or remorse or stories. I just did it. And once again, I was reminded that an unpleasant situation can be made infinitely more tolerable by the choices I make with my mind.

This is powerful knowledge. Easy to say. Hard to do. But I try every single day.

Anatomy of a Healing Salad.

My battle with chronic lyme disease involves taking a lot of pills. But diet therapy is is an equally important part of my regimen. Here is what this particular salad is doing for me:

  • Raw Sauerkraut and Sauerkraut juice add beneficial bacteria to my gut. This is important because my gut is overrun with bad bacteria and I need to restore order.
  • Cilantro helps pull heavy metals out of my body. I am carrying lead, mercury and other unwanted metals.
  • Cooked broccoli and cauliflower are dense with nutrients that will help me heal. Also, cooked veggies are easier for me to digest than raw greens.
  • Free range roasted chicken for protein.
  • Udo’s Oil contains the proper blend of the 3 6 and 9 Essential Oils that are critical for optimum health.
  • Olives just because I like them.

All these foods are part of the Paleo Diet, which my doctor has recommended as part of my treatment plan. The Paleo Diet is inspired by the diet our ancestors ate when our digestive tracts were first developed.  The diet favors lean animal protein, vegetables, fruits, nuts, seeds and healthy fats over gluten dairy, grains, sugars, and anything artificial or processed. 

It is right for me for a number reasons. 

  1. My body  has a hard time breaking down carbohydrates, and the Paleo diet is a low carb diet.
  2. Lyme disease, along with the bacteria, yeast, and bad gut bugs that currently reside in my digestive tract feed off carbohydrates. Eating a low carb diet helps starve those unwelcome visitors (I call them visitors, as that implies they will be leaving one day).
  3. I am overloaded with toxins, and the Paleo diet emphasizes unprocessed, toxin-free foods, so I am not adding to my toxin burden.
  4. The Paleo diet stresses ample servings of nutrient dense vegetables, fruits, nuts, seeds and healthy fats that will help me heal.

I adhere very tightly to my diet, and go to great lengths to maintain it no matter where I am. People often wonder why I’m such a stickler, and can’t imagine how I tolerate the “deprivation” of carbs, gluten, dairy, sugar, etc.

I see it a little differently. The only thing I’m deprived of is my health and my ability to digest normally. So, every time I raise a fork to my mouth, I have a choice. Am I going to feed myself something that will also feed the bacteria that’s making me sick, or am I going to feed myself something that will kill those mothers and help me regain my health?

It’s pretty simple when you look at it that way.

I Had A Really, Really, Bad Weekend.

I am toxic. Not in a Brittany Spears circa 2012 kind of way, but in a too-many-toxic-substances-in-my-body kind of way.

My body is host to a number of unwanted guests including: black mold, mercury, lead, Lyme Disease, bacteria and yeast.

These lovely guests make it impossible for my body to work the way it’s supposed to. Specifically, my digestive tract is in ruins, and I suffer from fatigue and mental exhaustion. The daily act of living wears me out.

My doctor tells me eliminating toxins is the only way I’m going to regain my health. Toxins may be eliminated in a number of ways, including: diet, infrared sauna, green clay baths, lymphatic drainage massage, craniosacral massage, micro current therapy, and many others. There are also many supplements that lead toxins to the exit.

This all sounds pretty simple, unless you’re highly toxic. Which I am. The problem is toxins do not leave the body quietly. In my case, they leave in a spectacularly unpleasant fashion.

Let me take you through my weekend. On Thursday I took 6 activated charcoal tablets 3 hours prior to my lymphatic drainage massage, as directed by my doctor. The charcoal is supposed to soak up the toxins released by the massage and help escort them out, thus lessening the burden on my body.

I felt pretty well after my massage, so we thought the charcoal strategy worked. Until it didn’t. That’s when the toxic storm hit. When I am in the midst of a toxic storm I experience the following:

  • A sense of heaviness all over my body that makes it hard to get up.
  • My digestion grounds to a halt. I can literally feel my body laboring to digest, and I basically can’t move after eating a small portion of a healthy meal.
  • I have extreme anxiety that is impervious to any attempt to manage it.
  • I am deeply fatigued.
  • I become overwhelmed by even the most simple of tasks.
  • I begin to feel hopeless.

I was in the above state for for four days – Thursday through Sunday. It was not pleasant for me or my family. I do my best to keep plugged in to life, but it’s very, very difficult when I feel so horrid. I am not a lot of fun to be around.

Then I woke up Monday morning, and the storm had passed. Blessed, blessed day. I felt very fragile and vulnerable, but I also felt balanced, and sane. There was room once again for optimism.

My doctor tells me this cycle is a very typical part of detoxing. And with great compassion, she tells me I will probably be experiencing these episodes for the next year.

That’s a long time. But I’ve been sick for nearly six years, so what’s another year at this point? Plus, I feel like I am heading somewhere. To daylight. And I will do nearly anything to get there.

When I first got sick, I was as happy as I had ever been in my life. I was fit and healthy. I was madly in love with my husband, and I loved being a mom. I was vibrant and very much alive.

I am still madly in love, and being a mom is my great joy. But the part of me that was fit and vibrant is a stranger to me now. I can’t feel her or relate to her in any way. But one day I will find my way back to her. And the idea of recapturing even a fragment of my former vibrancy is what will keep me marching through each toxic storm. One at a time. I can do this.

It’s 10 AM, and I Have Spaghetti Squash in the Oven.

Pre-lyme, this never would have happened. Post-lyme, it’s the norm.

Chronic Lyme Disease affects people in many different ways. In my case, it shredded my digestive tract. 

My life’s mission for the last 5 years has been to heal my digestive tract. I have literally tried everything: pharmaceuticals, supplements, various diets, powders, potions, massage, meditation, colonics (don’t recommend), doctors all over the country. 

Of all these, diet therapy is critical. However, as you might guess, eating with shredded intestines is not a lot of fun. Imagine then, the irony that diet therapy is a crucial part of my recovery plan. That’s right, my digestive tract is in shreds, and I am healing it by eating.

Through much trial and error, I have learned my fragile intestines do best when I eat fresh, organic. “clean” food made in my own kitchen. Which means my kitchen in always crankin’. I make nearly 100% of what I eat from scratch, and that takes a lot of planning. Sometimes (like today), I need to prepare elements of the meal earlier in the day if I won’t have time in the afternoon. 

After trying numerous diets, I landed on the Paleo Diet, as it’s easiest for me to digest. Happily, it’s also the diet recommended by my doctor for combating Chronic Lyme Disease.  A win-win for me and my poor digestive tract.

A quickie on the Paleo Diet.

IN:

Vegetables, well sourced animal protein (grass fed beef, wild fish, free range poultry), nuts, seeds, healthy fats, some fruit.

OUT:

Gluten, dairy, sugar, processed foods, artificial ingredients, legumes, grains.

Once I got over the shock of what I would not be eating, I started to focus on what I would be eating, and it started to feel manageable. In many ways, the paleo diet is a blessing in my life. It’s fairly easy to follow, it’s family friendly (my family eats paleo dinner every night, and I’m not sure they really know), and it’s relatively easy to maintain when eating out – most restaurants have animal protein and vegetables.

Yes, I’ve given up a lot of foods. But I don’t feel deprived. In fact, I feel grateful. This diet is helping me heal, and the the possibility of regaining my ability to digest normally is much more important to me than anything I’m not putting in my mouth.

I’m Drained.

In a lymphatic way, that is.

Let me explain.

Per an earlier post, my body is seriously bad at detoxing. That means the every day toxins that typically roll in and out of a healthy person’s body tend to stay in mine. A body doesn’t like that.

As a result, my body is host to many unwelcome guests, including: black mold, heavy metals, yeast and bacteria. Sexy, right?

The fact I have chronic lyme disease aggravates my detox issues, and the detox issues make it difficult for me to kick lyme disease. Bad cycle.

So, the toxins need to go. And since they are not leaving on their own, I need to help them.

My doctor recommended I add lymphatic drainage to my detox regimen. Lymphatic Drainage consists of a very light massage around the lymph areas in the neck, under arm and abdominal areas. It was quite relaxing.

Then about an hour later, I knew it worked because I started having a detox reaction, which for me includes nausea, tiredness behind my eyes and a feeling of heaviness throughout my whole body. Basically, I felt like crap, which is actually a good thing in my world. Feeling like crap = toxins leaving.

Here’s where it gets more interesting. My doctor says when I feel detox reactions it’s because my liver is presented with more toxins than it can effectively deal with, so I need to help it out by turning my skin into a second liver. Two ways this can happen are a green clay bath, or a far infrared sauna.

After my massage I went for the bath option because I felt too crummy to drag myself to the sauna. After the bath I applied rosemary essential oil (good for detoxifying) over my abdomen, liver area and the bottoms of my feet (fastest way oils are absorbed).

After all that, I felt infinitely better and was able to resume my day as if nothing happened.

It can get a little frustrating and disruptive to take a toxin-time out in the middle of the day, especially since a toxin storm can strike at any time. But my doctor says it’s critical to take corrective measures at these times because any toxins that are not handled by my liver will be reabsorbed into my body. Not what we’re looking for.

So, the storm has passed, and I’m back in the game.

Until the next storm.

It’s not a matter of if, but when. I will be ready, and I will greet it with gratitude, because it’s a sign my unwanted guests are leaving.

Sometimes God Answers Prayers Really Fast.

Yesterday was a bad day. My brain was fatigued, my body was fatigued, my stomach hurt, and I had no appetite. 

This is nothing new to me. I have good days and bad days, and I’ve come to take each in stride. Neither is going to last, so I try not to get too invested in how I feel on any particular day.

I used to get very excited about a good day, thinking I was turning a corner, only to be crushed when the next bad day came along. Inversely, I used to wake up on a bad day thinking I would never again have a good one.

Vicious cycle.

Through meditation I’ve come to understand that everything is always changing. As such, I try to be present with whatever is happening now. Whether it’s a good or bad day, it’s the day I’m having and has no bearing on tomorrow. I am not clairvoyant so I will have to deal with tomorrow when it comes. And not a minute before.

This is much easer said than done, particularly when you’ve been trying to stay level headed about good and bad days for over 5 years. Some days, it’s very difficult to remain level headed, and yesterday was one of them. My bad day was overwhelming. It broke me in a way. 

On these occasions I am usually able to find a way to see light, even if it’s just a speck. But yesterday it was only dark. I hung my head and asked God to show me some light. Please, any sign that something might change for me. I wasn’t asking to be cured, I was just looking for the tiniest reason for optimism. A thread.

Before I could even finish my prayer, the following notion shot right through me: “I am on the journey I am supposed to be on.” It brought me a comfort I can’t adequately explain. I had been holding my breath all day, and I was finally able to exhale.

It’s not my job to understand where this journey is going. Rather, it’s my job to stand in it one day at a time. To be mindful of what I’m supposed to learn, how I’m supposed to grow, and figure out how to use my experience to help others.

This is happening to me for a reason. The reasons reveal themselves to me in ways both big and small, but when I have dark days like yesterday I need to remind myself that God’s not done teaching me yet.

I am a willing student. I’m listening.