Finding Thanks.

I had a lovely Thanksgiving; filled with family, friends & conversation- not so much food, but I don't care about that anymore. I am incredibly thankful that there was no mention of what was or was not on my plate- I worried about it needlessly the entire morning.  I thoroughly enjoyed the evening and it seems that feeling is mutual by all involved.  I am so blessed to have each individual that was around that table- and so thankful.


My best good friend & her family came up to visit for the holiday, and it was so wonderful to see her again, I was looking forward to it for weeks.  Having survived similar strange & tumultuous childhoods, we are very much sister-friends/war-buddies, cut from the same idiosyncratically knitted cloth.  At the same time though, it was difficult to be with her.  She see's through me; straight through everything that I put between myself & the world in order to be strong enough to get through my daily life- the life that I have no choice to be strong & just live despite the effects of EDS.  Before even a minute goes by, she's concerned & wants to know how I'm doing and what I'm doing to make myself better.  I work very hard to live under my own terms (I'm terrified of taking prescription pain meds and so I don't yet), and in doing that, I work very hard to be strong- stronger than I physically can be, which of course makes me that much weaker when my fortress falls down.  She is of the few people who's simple question of  "how are you really?" becomes my kyptonite.   I bubble over uncontrollably just as slightest tear threatens to warm the back of my eye.  My poor friend.  Just like everyone else in my life it's impossible for her to understand, yet she looks at me & knows I'm not ok, and she's completely helpless to do a damn thing about it and that pisses her off.  She & her family left this morning for their long trek home.  She texted me that she felt sick thinking that she had offended me, even angered me during our last conversation.  I wasn't offended or mad, just sad at our lack of connection over this THING that has taken over so much of my life since we'd last seen each other.  EDS has come between us, and she has not had a chance come to terms that if she understood, she'd have it too, and so she just can't.  We will get there, but in the mean time, I'm feeling very alone.  I did a lot more than I should have yesterday and so my resulting extra exhaustion & pain is working against me coping with this great big lonely cloud above my head. 


So today I will rest & allow myself to feel the way I do & I will pray for a better, stronger tomorrow.

Inside Thoughts: an evolution

Being the neophyte blogger that I am, I am still exploring & getting to know myself as a putting-myself-out-there-blogger (not something I do very comfortably in my outside life).  I'm noticing now, that this breath-of-fresh-air outlet of mine is taking on a personality of it's own; instead of me telling this blog what I want it to be, my inside thoughts & this blog are evolving into something I don't yet know.  I had originally intended for this blog to be about me & Ehlers Danlos Syndrome; however, I don't let EDS rule my life outside, and so it seems unnatural for it to be the rule of my blog.  EDS is apart of me, and I am apart of it; mathematically, one part of something is just that, and it can't be made whole until all the parts are put together.  My experiences with EDS are important to who I have become; they are part of what have given me a view of life that I feel many people don't have.  If I am truly honest, while I wish my body would just let me LIVE my days without so much struggle, I am thankful for this life-perspective. It's a tangible carpe diem that screams daily into most of my subluxating & dislocating joints, my unpredictable heart rate, body temperature & struggling body.  It is this that helps keep me from disappearing in fear, but instead standing firmly to hold a hand who's most precious loved one is dying, feeling as honored to be there with them as it is to be holding another's hand as they give birth.  It is this perspective that makes me want to experience every moment in between, the good & the bad to it's fullest so that when my time comes I can confidently kiss the world good-bye knowing that I have been good n' loved by those in my life and that they have been good n' loved by me.  
Thus the blog's name change; it fits better to what this blog has become, or perhaps was since my first post.  I am not writing to gain readers, though seeing that it is being read certainly makes me smile :) , I'm writing it for the exact reason above- to let my inside thoughts play.  My inside thoughts use commas too often & they love run-on-hyphenated-sentences.  My inside thoughts love word pictures, silly/punny jokes, and they are not consistently eloquent- if ever.  They are just mine, and they are here.  :)

And now for something COMPLETELY different....

  There are many a Friday that come along that make sigh blissfully that I made it through the week; then there are Friday's that make want to shout from my roof top:

"THANK YOU GOD! I'M SO GLAD THAT FRIDAY IS FINALLY HERE!!!! I DIDN'T THINK THIS DAY WOULD EVER COME! FRIDAY, DON'T EVER LEAVE ME AGAIN!".   

Today is that kind of Friday.  Extraordinarily busy work schedule (which is saying something since my schedule is always incredibly busy) coupled with migraine-inducing issues among employees (that I believe I have finally solved just short of terminating someone- I'm so glad I did not have to do that) & increased EDS pain has made this week suck (though, it of course, could have been worse & I am incredibly thankful that it was not). 


With that said, I bring you a list of things that make me smile, just for the fact that they exist on YouTube (I'd post pictures of things that make me personally smile in my life, but for some reason blogger won't let me right now):

The Muppets (counting down to the new movie!) & Tributes to Queen!

Coffee & Stop Motion Animation (so almost called myself Gumby-Girl)

Friends & Feeling better (I almost always pop in a Friends DVD when I'm lying in bed and wrapped up heating pads trying to make my EDS pain go away) 

:)

HAPPY FRIDAY 

&

11-11-11!!!!!!

speaking of....

Dear Dad,
  The most effective way to show me that you don't care and you don't listen to me is to begin this afternoon's interaction as you did:


Me: " Hi Dad!  It's good to see you!"
Dad: "Geez looking thin."
Me: (hiding my disdain) "Yes, I know, I'm trying to eat what I can."
Dad: "C'mon, are you doing this on purpose?"
Me:....


:(

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 :)