Thursday, November 12, 2015

I have a not-so secret, secret that I need to tell you.

“Why are you so tired? You just haven’t seemed like much of yourself.”


Her words pierced my heart because this not-so-secret SECRET I’d been holding onto had finally started to present itself to the world. I remember having endless amounts of energy. I also remember when I was in high school, I went through weeks of less energy than normal, but I always equated it with hormonal shifts. During my early 20s, though, I started to notice extreme fatigue. I figured it was because of all of the added stress I put myself under and the lack of sleep I was getting. Once I graduated, though, I felt much better. I was tired, but not like before. After the birth of my second daughter, though, I noticed I struggled to find energy. Again, I chalked it up to being a mother to two adorable, precarious, and energetic small ones. However, something that seemed to become more and more common was the regularity in which I was contracting strep. I went from getting it once a year, to 3-4 times a year for the past few years.

Then my health continued to shift downward. I had vertigo. I discovered I had a Venus Cavernous Malformation. I have degenerative disk disease, likely cause by a fracture in my lower spine that I sustained when I was 4. I have asthma. And….I’m exhausted. Like I was hit by a truck exhausted. At the end of this summer, I went in to my doctor, with certainty that I had strep, yet again, but detailed everything else I had on my mind. She ran lots of blood work for me, ordered an MRI, and I waited for the results.

Bianca, it appears that you have arthritis in your neck. I’m going to recommend pain management therapy, even though I’m sure you will decline.” She referred me to a pain management specialist, but I declined--for now. Just as I declined for my chronic back pain. I am able to live with the pain, so I don’t want to undergo injections until I really need it. But for now, I am able to manage just fine as long as I keep stretching. My doctor was ok with my decision for now and she was supportive of me. “Just keep moving, Bianca. That’s the best thing that you can do. Move within reason, though. Don’t go crazy!” she told me.

“Bianca, you don’t have anemia, but you do have low Ferritin.” Ferritin is the protein that iron binds to, so if is low, then you have lower iron. I show many traits of anemia, but I am not anemic. She encouraged me to shift my pescatarian diet to one that included red meat a couple of times a week. I tried it and I did feel more energy, but I also felt heavier and slower.

Bianca, you have Epstein-Barr Virus. Actually, you have so many antibodies of it, that we can’t even measure it. Based on what I can tell, you have had EBV since  you were a teenager. Have you ever felt so tired you feel like you’ve been run over by a truck? Have you had a coffee for energy, but it doesn’t seem to work?” I nodded my head. “Well,” she said as she put her hand on me, “you have Chronic Fatigue Syndrome. And right now, you are experiencing a really bad episode.

I was shocked, but calmly asked what I could do, while letting out tiny sobs. She encouraged me to rest, while also smiling knowing that it would be very difficult for me to do that. She said, “Bianca, I’m going to need you to take a diet from life. Just pull back a bit and allow your body to heal, because you don’t know the long term damage that you could be causing by not resting when you need to. Please take a couple of days off from everything as you need to. Yes, I still want you to keep moving, but go at a different pace.” She said diet because no one likes to go on a diet. Change your diet, but not forcibly go on one, right? I like that my doctor knows me well enough to know the kind of person that I am—one that doesn’t want to rely on pills and medication and a person that is always on the go. Because I love to read medical journals and whitepapers for fun, I dove deep into the throes of learning all about EBV and CFS. I know what my indicators and triggers are. I know how to adjust and adapt. I do NOT yet know how to deal with slowing down. While I try to make myself be ok with it, when it is noticeable by others, inside, I’m upset and angry. I’ve run marathons. I’ve run half marathons. I’m a college athlete. I’m a mother. I’m a wife. I work in Corporate America. I’m also a photographer. I’m an event planner. I’m a writer. I’m an adventurer! I don’t have the time to have a diet for life. I don’t want a diet from life!

Here is where I issue a blanket apology to some: I’m sorry for the inner shade I threw at you when you caught me staring at you. Those of you who are absolutely healthy otherwise, but take it for granted and choose not to appreciate your unbroken body, yeah…those people, I was jealous of them. I was envious of their lack of guilt for not exercising, of all of the sleep they were having, of their poor dietary choices---and their lack of enjoyment for eating all of those things they let themselves eat, because dangit, I want to eat 3 honeybuns, too, but I can’t because I will totally feel it later. I’m sorry. I’m not a nice person when I’m hangry. I’m not a nice person when I’m hurting. Really, I just needed a hug. Then I would eat some chocolate and lay down.

Sometimes you meet people at the right moment when you are supposed to meet them.

Last month, I found myself in NYC eating brunch next to a friend of a friend. She and I were talking about various things and I noticed that she didn’t eat sugar, or grains, or even drank alcohol. She monitored her diet very carefully. So I asked her if she was gluten-intolerant or Celiac. She said no, that she suffers from Chronic Fatigue Syndrome. She told me how it consumed her body and as typical of CFS, it attacked the parts of her body that she used most—her brain and communication skills. You see, she is a writer and she recounted to me how difficult it was for her to focus to formulate a sentence, to have a clear brain to use her language skills. She knew of the words, but she was unable to articulate and recall her vocabulary. Also, she said she had little to no energy to even get out of bed. She also told me of her friend who was a dancer, who lost the ability to to use her legs. She wasn’t paralyzed, but her legs were too heavy, too stiff, too painful to move. So she went into further detail of her dietary changes, which was a supplement to a treatment she’d received back in her native country (not at all approved for by the FDA). We had to depart, but her words stuck with me.

Then, less than a week after that, I had a discussion with a friend of mine who went through a dietary detox to reset her health. She actually went through a specific program, but as we talked more and more about the details, I was going to simplify it and determined to give it a try. It gave her great results for her health goals (not weight loss), so I told myself that November 1 would be the day I would start. It would also give me the opportunity to mindfully eat and to consider those who do not have food immediately at their disposal. Leading up to the first, though, was a vacation in Sonoma with friends and family. I ate and drank without restriction and with passion. However, I also suffered as a result from it. I felt so incredibly bloated, slow, and fat. I was exhausted, I had headaches, and body aches. I look at images from that trip and while I am truly happy, I am not at all happy with my shape. On Halloween, I stepped on a scale and was horrified by the number that was looking back at me. But this isn’t about fitness or weight, so I won’t fixate on that. I will, however, say that CFS took a big toll on me in recent months, both physically and mentally.
What was my diet?
  • Vegan
  • No dairy---no cheese, no milk, no butter (aaaack)
  • No animals of any kind. No animal broth. No fish.
  • No rice
  • No caffeine…including coffee
  • No sugar—raisins were ok, but no honey, nothing with added sugar in it.
  • No grains
  • No alcohol
  • Coconut oil for everything.
I had to prepare, yes, but it wasn’t as bad as I thought. (I did however miss eggs!) HUGE shout out to my support group who encouraged me by suggesting recipes, trying out juice, or just giving me a thumbs up.

Breakfast:

I made my own cereal of equal parts flaxseed and chia seed. I mixed in 3/4 cup of coconut milk and heated it for one minute in the microwave. I topped it with banana.
Kale Yeah juice from Whole Foods: kale, pineapple, banana, orange juice

Lunch:

Salads topped with beets, black beans, garbanzo beans, and half an avocado

Snack:

the other half of my avocado and plain hummus or sometimes artichoke and olive hummus

Dinner:

Quinoa with some type of vegetable medley
Vegetable soup
The goal was to make it to at least 10 days. On day 8, I caved and ate eggs, but I was strict with everything else! I was happy to know that eggs didn’t bother me. On day 11, I tried a bit of dairy. It didn’t affect me too negatively, but I did notice a change. On that day I also tried a glass of champagne. I took all I had to finish the glass and I immediately noticed adverse reactions. My intestines felt like they were on fire. The next day, I felt sluggish and I had a headache. Immediately, I went for my Kale Yeah juice to see if it would help and it did. But something else happened. I came across this article about EBV. Yes, I saw it was on Goop and rolled my eyes, too, but I strongly suggest you read it, especially if you suffer from CFS, Rheumatoid Arthritis, or Fibromyalgia. Much of what I took from it was the simple truth that I’d experienced first-hand. I had to change my diet. Yes, I still need rest, but I also need plants---whole, organic, non-GMO, plants as my medicine. I’ve already lost 10+ pounds, but I’m not hungry. I want a piece of chocolate and I would like some coffee, but I’m not hungry for them. Other friends who I’ve known who have adopted a plant-based diet---more than 95% plant based and cutting out all of the other stuff---have also noticed a significant improvement/positive shift in their health.

As for me, I’m gonna keep trying. I want to make it to 80, but not just arrive, but I want to dance and run into 80.

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