And For Lunch on the Plane I Had……

…….pretty much what I have every day.

Featured here is an organic salad of chicken, tomatoes, green beans, toasted almonds, lettuce and sauerkraut. My “dressing” is sauerkraut juice and Udo’s oil. Sounds gross, but it’s tasty and good for me. Plus every ingredient in my salad helps me heal is some way.

The drink is Kombucha, which helps add good bacteria to my gut so they can do battle with all the bad bacteria and bugs that live there. My doctor wants me to drink a bottle per day, so I made it my mission to find one at the airport, and I was successful.

The tin to the left is important for two reasons. First, it contains Flackers, one of the few store bought packaged items I can eat. Very exciting for me. The tin is also important because it contains coconut oil, which I slather on my Flackers. While my salad gives me the nutrients I need, it doesn’t deliver many calories. That’s where the Flackers and coconut oil come in. Just a few bites contain more calories than my entire salad.

I don’t always carry my own food everywhere, but it just worked out that way today, as I had the perfect amount of leftovers for a single salad. I can make airport food work when I need to, but today, it was just easier to do self service.

Plus, in my life it never hurts to have a cooler along for the ride.

Onward.

My Husband is a Saint.

That is true for many reasons. Today’s is the fact he is lugging all of the above (and more) in his carry on bag for me. I used to check all my meds until the time the airline canceled a flight, stranded us in an airport and would not retrieve our checked bags. Now we (my husband) always hand carry all essential food and meds. It’s a heavy bag, and usually draws extra scrutiny at security (as it did today), but the peace of mind is well worth it. Thank you, my love.

I Call This my Bag of Life.

We leave for vacation in the morning, and when we travel, I pack heavy. I try to keep my food and supplement routine as consistent as possible at all times, so that usually means an extra suitcase. It’s a pain, but well worth it. Giving myself the best chance to feel well on vacation is far more important than any luggage hassle I may encounter along the way.

Fingers crossed for good digestion, a clear brain and decent energy this week.

Please, please, please.

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.