Food & Me

 I have recently had the pleasure of meeting several EDSer's in a Facebook Group.  I'm not much of a group-joiner, but this particular group has the word 'positive' right in the title, so I thought I'd try it out hoping to find some like-minded people who suffer from this syndrome who want to treat it as positively and naturally as possible.


Anyway, I was talking to my new EDS-Friend and he asked me a question that I thought might be a helpful way to explain in more detail how EDS effects me on this blog:


Question 1: What is your biggest challenge of being a Zebra (someone with EDS) right now?


Answer:  My challenges always tie with one another; but for the last year the one that is by far my biggest challenge is Food.  4 years ago, I could eat whatever I wanted.  Now almost everything makes me sick.  The effects aren't always the same; dairy, Mammal (red meat, pork, etc.), fried-anything, or anything especially high in fat (except for avocado and small amounts of peanut butter, strangely enough) make me violently ill- almost immediately and it could last up to a week.  Gluten of most forms, however, give me a bad stomach ache and acid reflux (unpleasant, but not as intolerable as the other foods), but also result (I've noticed through elimination) in even looser joints & increased joint pain for weeks on end (which can be intolerable depending on the state of my pain level before the 'attack').  I've never been able to eat salt, even as a kid- it would make me swell up like a balloon and now in conjunction with the swelling, I get really bad pain in my bones (especially the bones in my face).  I hate explaining these things to a Doctor, I'm always greeted with the same "Wow you're crazy" look.  Nothing like being constantly miserable and seeking medical help then being told that my symptoms don't make any sense and offered depression medication. *sigh*.  To combat this, I stay away from the foods that hate me- which results in some very interesting looks in the cafe at work during lunch time- more on that later.


Here is what I can and do eat daily:

Bolthouse Farms Green Goodness Vegetable & Fruit Juice

    This is my breakfast every morning; I have it in a plastic drink cup with a straw that you can't see through.  I believe Bolthouse Farms calls this "juice", but it's rich consistency definitely makes is a smoothie, in my opinion.  nearof.com has a pretty accurate and funny description of this tasty juice "with a face only a mother could love."  It's got a TON of vitamins and veggie goodness in it, but it's sweetened with kiwi and apples, so if you can get past the sight and consistency of it; it's pretty sweet & tasty (close your eyes the first sip though).  This is what I'm drinking in the car on my way to work every morning.

After my green drink, I reward myself with some coffee, sweetened with  vanilla almond milk- the vanilla gives it the perfect amount of tasty sweetness.  After my coffee, I generally drink water for the rest of the day.  I might also have a banana later in the morning if I get hungry

For Lunch: Caramel sweetened brown rice cake with a bit of peanut butter

and an orange- helps with with the dry-ness of rice cakes & peanut butter.

Dinner is, again, limited.  For meat, I can have season & baked fish or poultry breast or egg whites. I'll almost always eat this with brown rice and steamed vegetable in various different ways (mixed together with ginger, or separately with other seasonings).  I can stray from this with some ground up turkey breast; my favorites are Stuffed cabbage-Italian seasoned (I season everything myself so no salt) turkey breast and home-made tomato sauce, and Ground turkey taco bowls (again, seasoned myself with cumin, garlic, onion & chili powder); mixed with onion, tomato, fresh salsa & avocado- it's Taco Tuesday at my house EVER Tuesday :)

As you can see, I am not the most exciting person to go out to eat with.  I am, however, pretty cool to have as a dinner host though;  I love to cook (LOVE it!) and will cook amazing treats and cuisines even though I can't eat them myself anymore. 

This silly tummy of mine gives me more of a challenge than just trying to find a way to nourish myself though.  I get a lot of comments made to me when I have to eat in public.  I eat in the cafe at work, that is not negotiable, I won't hide in my office to eat because a) I need to get out of there and b) my cafe has a big flat screen t.v. that always has CNN on  and that is the only time I can catch up on what is going on in the world around me.  That being said, I am almost always bombarded by comments like "No wonder you're so thin!"  and "Are you some kind of health nut?!", and something else related to my being from California.  This is often followed by comments about my weight that make me wonder at how it's ok to comment on a thin person's weight, but not an over weight person's.  I think the self conscious, oh-my-gosh-is-everyone-noticing-me-and-what-I-eat-now-I-want-to-pull-myself-into-a-hole feeling must be the same as if they were calling me fat.  Why?  Because I am not trying to be thin, I'm just trying to find food that will make me not sick, and enough of it to make me not die!  I don't want to talk about my diet because it's really not that healthy of one; I'm losing my hair, I have weirdly bendy nails that peel & look more like roof shingles that even nail polish won't hide. I also go through great pains in order to keep the gastrointestinal Armageddon that would occur if I were to eat the normal foods that they all take for granted a secret, and I DON'T want to tell them about it!
Wow...I think I needed to get that out.  I feel a bit better now :)