8/20/13

A Picture of myself? Oh, Man

This week's Wordless Wednesday: It's often hard to like pictures of ourselves - post your favorite picture of yourself

*Yeah... I can't do "wordless"... Sorry.* 

They are correct. It is very hard for me to like pictures of myself. Over the past several years there are a handful of pictures that I actually, truly like. Each one is significant and each one is in a different time/phase/place of my life. At this moment in time, my favorite picture of myself is one from a dare. Yep, a dare. 

There is a movement called Operation Beautiful and they have initiated a very powerful. No Make Up Monday. That's right. You are asked to take a picture of yourself, sans-makeup, and post it to Operation Beautiful/Facebook/Twitter - you get the idea. Seriously, this is something super hard for me and I know it shouldn't be. So, a couple of weeks ago I took the challenge and posted my No Make Up Monday picture to social media and wrote a post about the challenge. I have to admit, it was incredibly liberating and that picture is now my favorite picture of myself.

  

The other ones I'm fond of:
  
 A rose from the bouquet my hubby sent for our anniversary during his second deployment to Iraq.(2007)


  

On our trip to Boone (Thanksgiving, 2008) 






8/19/13

Lost Down The Rabbit Hole

There seems to be a new fad going around in full force: clean eating
The root cause of this lifestyles is admirable and important. I love that more people are becoming aware of what they're consuming and really beginning to examining their food... 

That being said, I desperately want to caution those who have adopted this lifestyle change. So here is my cautionary tale:

{source}
http://www.michellechant.com/2011/08/
curiouser-and-curiouser-down-the-rabbit-
hole-and-back/

I wanted to be a lean, mean, clean eating machine. I did everything right. I did my research. I balanced my meals. I was informed, and level-headed. I workef put everyday and had six pack abs. Despite all of that, my obsession turned lethal. The scary truth is that being "healthy" nearly killed me. Now anytime I see someone being/striving to be uber-healthy I feel an urge to warn them, to show them the otherside of the looking glass. 
 
 *Let me clearify, by "healthy" I mean: Cutting out processed foods, trans fats, unnatural sugars, added sodium and chemicals, preservatives, refined flours, dairy, and meat. I ate a very balanced vegetarian diet (I did eat fish and egg whites). 

At about the same time that I had mastered clean eating, I also began experiencing terrible GI issues (including extreme nausua, severe cramps, and stabbing pains). I don't believe my new lifestyle had much to do with it. I felt physically better whilst adhering to it,and  drastically worse when I veered off-course. I had bouts of milder symptoms before (off and on for several years, actually) so I believe the severe physical illnesses I was experiencing were most likely the same thing. I do belive that my compromised health exasperated my underlying medical issues (I just recently got my answer as to what this mystery ailment that has plagued me for over 10 years is - Dysautonomia). Coincidentaly, the deepest part of my struggle with ED occured just when my Dysautonomia really started to get revved up. As that gained strength, the physical pain of my body was in became too much. The pain from just ingesting food was great enough to cause a fear so intense that I would develop a full-fledged phobia. 

I should also mention that I experience (and sometimes still do) a strange compulsion to move after ingesting something. This started several years before my epic battle with ED began. It was as if being idle turned the food into lead, which would painfully weigh down on my stomach. That "full" feeling was physically painful. Excruciating. 

Soon after the clean eating and fitness obsession hit its pinnacle, the delusions began. If I worked out, the calories I ingested would turn to muscle and it would fuel my body more efficiently. If I didn't, then said calories would turn to fat and would be wasted. The health and fitness fanatic in me just screamed "Muscle is good, fat is bad!"

I will always remember one particular day in the fall of 2002. It was then that I realized I was completely at the mercy of my eating disorder. This was the day that I knew I was sick. I knew I was too thin. I knew I was dying. Even more startling - and important to convey- is the fact that I didn't want to be that thin. Not in a million years. I wanted to gain weight. I wanted to be like I was before: Athletic, strong, fit, lean but not skinny. What happened that day and the revelation I had, shook me to my very core. I was terrified. That moment went something like this:

It was morning and I was sitting on the couch, watching TV while I ate breakfast which consisted of a regular sized bowl of cereal (some sort of Kashi), soy milk, and 1/2 a banana. Sensible and satisfying. 

Immediately after ingesting it, I panicked. That was the day I knew I was a prisoner on death row. The only reason I didn't reach out and seek help right then and there was because of the social stigma attached to eating disorders. I was too scared of what everyone else would think. The fear of being labeled a weak, entitled little white girl was too strong. This vivid memory is locked in my mind, forever etched into the walls of my psyche. I dig it up anytime I hear that voice - that dreaded siren call of ED- whenever I'm on the brink of relapse. This memory reminds me of the journey back home and how long, scary, and dangerous it was. Because of that, I don't dare jump back down that rabbit hole.

“In another moment down went Alice after it, never once considering how in the world she was to get out again.” 

* Side note: I think it is important to be honest in order to truly grow awareness. However, to keep things as safe as possible I will NOT divulge information such as: weight, height, BMI, or clothing size.


The depth of my rabbit hole

*Upon Hospital Addmittance*
    Average body temperature: 95 degrees
    Average heart rate: 40bpm
    Hospitalized in critical condition
    Beginning stages of multipule organ failure
    NG (nasogastric) Feeding Tube (24hr/day feeds) 
    PICC line with 24 hr IV infusion nutrition (TPN - Total Parenteral Nutrition)
    Refeeding Syndrome after starting IV and NG tube nutrition.
    Gastroparesis
    Severe GERD
    Water intoxication 

How long did it take  me to make my way out of just that part of it?
    I was rid of the PICC line and NG tube after 6 months, but was still unable to attend school for another year. 

Ok, how about after that? 
    It's 11 years later and I still have issues with gastroparesis. 
    I have weak joints, osteoarthritis, gastritis (which causes my stomach lining to bleed periodically), neurological damage (though some of that is due to a medication reaction a year later), memory problems... That's all I can think of at the moment. 

Please, please, please be careful! Being healthy and fit is wonderful. No longer being able to enjoy (or even eat) something "unhealthy", or just a day to be "lazy" is not. 



8/11/13

Special Needs Links/Resources

        
*Autism and Autistic Community Links*(for all ages, not just kids)

The Autistic Self Advocacy Network (ASAN)
http://autisticadvocacy.org

The Autism National Committee
http://www.autcom.org

Autism Network International
http://www.autreat.com

Autism Women’s Network
http://autismwomensnetwork.org

AASPIRE (Academic Autistic Spectrum Partnership In Research and Education) 
http://aaspire.org

Autistic Hoya
http://www.autistichoya.com/p/about.html?m=1

TAAP
http://www.taaproject.com

The Caffeinated Autistic (this is a great blog)
http://thecaffeinatedautistic.wordpress.com/tag/autism-speaks-doesnt-speak-for-me/


*Disability Advocacy Links*

TASH 
http://tash.org

ADAPT 
http://www.adapt.org

*Cerebral Palsy*                                


NDSS - (National Down Syndrome Society)

Spoonie Links and Resources

Chronic Illness Links:

No Makeup Monday

Yesterday, I learned about the No Make Up Monday movement. Every Monday Operation Beautiful celebrates the natural beauty we all have by going make up free. For the record, I love make up. I think it's so fun! - and Operation Beautiful agrees with me ;) But it is so important to remind everyone just how amazingly beautiful they are as their naked self. I actually really needed this reminder. After taking several pictures and analyzing which one was the best, (Proof of just how strong our sense of commercial "beauty" really is.) I nervously posted my picture to Facebook and Twitter. Here I am posting, once again, on the Internet. I must be getting better at this whole "body confidence" thing.



 

Some added inspiration, courtesy of Huff Post Women, helped quite a bit. In this article "Why I'm Wearing A Bikini On The Internet" Brittany Gibbons writes about her mountain she wants to climb: Wearing a bikini. *Note: I love bikinis but after having two kids I'm less than friendly towards them* She goes even farther and posts pics of this endeavor on the Internet! She's now my hero. Later this week she posted another article in response to the outpouring of commentary on the bikini one. This one was the reveal of her weight! I know, she's amazing! This article titled, Why I'm Revealing My Weight On The Internet she writes about how she had to defend her body and how she is, in fact, plus-size. In the end she writes: " People carry weight in all different ways. you can't draw a line in the sand and toss assumptions on either side. I do this, all of this, to show you what a real person looks like at this weight. And what a real person looks like in those cloths." 

Love it! Maybe one day I'll be that brave... Until then I will continue to raise awareness and try to help others in their recovery. Another awesome act of bold, natural beauty in the media is The Nu Project. The Nu Project is a 100% volunteer gallery of nude women in all shapes and sizes.The goal is to inspire women to feel better about their bodies. Huff Post Women also did a story about this project (how I heard about it) and has a slide show of 7 pictures from the gallery that are stunning. The creator of The Nu Project, Matt Blum, says that he tries to photograph women where they feel most comfortable - in their own homes- respectfully, with out a lot of sexual over/undertones.




Simply beautiful
        



Letter to my 16 Year Old Self

Dear Me,

Yeah, this is me...Er, you... In the future... I know what you're thinking - but this isn't a dumb prank your friends are pulling. You're quirky and aren't one to dismiss strange things, so I'm going to assume that about half way through this you're going to just take my word for it. I also know that you're crazy busy but please just listen and give me the benefit of the doubt. So, yeah, this is you in the future... I'll let that sink in a minute. Ok. Now that we're on the same page (or at least the same book), I'll begin. You are 16, and unlike most 16 year olds you don't take yourself to seriously. That's good. Hold onto that. The adults in your life really do respect you and what you have to say. You don't have to try so hard to impress them, or anyone for that matter. For some reason (believe me, you'll spend years trying to figure this out. You'll come up with some theories, but nothing earthshaking. No crazy revelations.), you feel that you must be the best. Quit chasing that coveted #1 spot. In everything. I know that working your ass off only to make it to the top 5 (in everything) is frustrating - and for once it would be amazing to actually be the best in something - but top 5 is actually really awesome.

After that speal I feel compelled to tell you that you don't even need to try for top 5. No matter what anyone says. You don't have to exhaust yourself trying to impress everyone because of some idealized notion society has placed on you. Everything is not a competition. That also goes for your love life. Let's face it, it's not even about the boy anymore. It's a competition. If you could just move on it would save a lot of heartache for several people. Teenage angst and melodrama aside, you really can stop competing with yourself. Stop pressuring yourself to be the "ideal" daughter/student/friend/etc. Let go of that incessant need to be "perfect". To have zero flaws. LET IT GO! It could help us tremendously in the future if you would just realize that you already are perfect. There is no need to keep chasing the mirage. That's all it is, a twisted little mirage. In two years someone will say these words to you: "you ARE perfect" and they will resonate with you more than any truth ever before. I know that 2 years seems really close, but it is actually light-years away. You're rolling your eyes right now and are thinking, "Yeah, yeah, yeah. Whatever. Everything is going great right now. I have awesome friends and everything is going according to my plan. I have a high GPA and am on track for a stellar transcript. I have scholarships lined up and it's all because of my hard work. That hard work that you're telling me to let up on. If I let up, I am never going to make it. I'll fail."


That takes me to my next message.
In a year your world is going to come crashing down around you. You will have no warning (other than this right now) and you'll panic. You'll panic like you've never panicked before. Yeah, I thought that would get you're attention. To be honest, I'm conflicted with whether or not to disclose certain details of this chapter. If you know before hand and somehow manage to side-step it, it would change everything about you... I know I would have liked some warning, so I'll tell you anyway. If for some reason, through some kind of divine intervention you do see it coming, just let it happen. If nothing else, let this be of some comfort and hopefully it will soften the blow of what is to come. In one year life is going to test you. Big time. You MUST survive. No, I'm not being dramatic. This is a real. It's life or death. Ok, don't panic. You're panicking, aren't you? Stop. Breath

It's nothing like what you are thinking, or could possibly think. You aren't going to be stalked by some crazy serial killer or anything. When your world is bleaker than anything you've ever been through, trust in your friends. They really are great friends. They will stand by you through everything. Don't cut them out. You won't want to talk to people, but try. They care more than you realize. Give your parents a break. They aren't trying to control you. They are scared. Terrified. Stick to your guns. Just because they are supposed to be "experts" doesn't mean they know what's best. Listen to your inner voice. Above all else, remember: This too shall pass When it does, wonderful things will happen because of it - but I can't say anymore about that ;) Be strong. Your life may not happen as you so carefully planned, but it will be perfect. *Thank you, Carrie at Just Mildly Medicated for this great blog idea. I loved it :)

Old School Blogging

 I was visiting one of my favorite blogs, Hope and Coffee, and I saw that she did this "old school blogging" post. It looked pretty fun, and yeah, I needed something kind of fluffy to post (I admit it!). So I borrowed her template and here's what I got:

What where you doing 10 years ago?

Wow, OK, so "fluffy" isn't exactly going to happen as much as I thought... I just realized that 10 years ago I was as close to dead as you can get. I was a junior in high school. I had everything going for me: National Honor Society member, top 10 student ranking, Pipe Major in the pipe band (our town has a Pipes and Drums band -bagpipes- that competes internationally), soloist in the symphonic band (piccolo), tons of friends, AP classes, scholarships, etc. I was extremely healthy and fit. I only ate whole foods (way before the trend) and was a vegetarian. Then the floor fell out. I became very ill, very fast. With in 3 months I had dropped 30lbs (I was 4'11", so 30lbs is A LOT). The weight loss was largly due to an underlying medical condition that caused crippling pain whenever I ate anything. The doctors didn't know what was going on. By the time I had reached such a low weight, I had developed a full-fledged phobia of food. All I had to do was see food and my stomach felt like it was being stabbed. Everything that happened when I ate, I would suddenly feel. I was admitted to one of the country's best children's hospitals (All Children's Hospital in St.Pete, FL). At one point the doctors, along with a chaplain, pulled my parents aside into a conference room and told them that if they couldn't get me to eat with in 6 months, I would die (that's while being on a feeding tube, TPN, oxygen, etc.) Long story short less long, I was fighting for my life. I later acknowledge that I did have an eating disorder, but I also had a chronic medical condition. My eating disorder was ignited from the combination of that undiagnosed medical condition and my need (obsession) to stay healthy and fit. The later has just recently become recognised by the eating disorder community as orthorexia. So, in a nutshell (albeit a large nutshell) that's what was happening 10 years ago.

5 Things on your To-Do list
  1.  Keep kids entertained, engaged, learning, etc... Ugh, can't that be my 5?
  2.  Laundry
  3.  Write/Research
  4.  Make dinner
  5.  Clean snakes' cages and feed Opal
What are 5 snacks that you enjoy?

Can I count coffee? Because coffee is my favorite everything ;) OK, fine, I'll put down 5 actual foods - Chocolate (the darker, the better), fresh fruit, pretzels, Luna Bars, raw veggies.

Name one thing you would do if you were a millionaire? Pay off our debt! Pay off my parents' deb, my mother-in-law's, and my Yia Yia's too. Fix our house in NC so someone will actually buy it (shoot, at this point it would be just so someone would actually want to sell it) and buy one here so my parents can have their house back. Savings! Donate!

Name some places you have lived: My husband and I both grew up in Dunedin, FL. When we were dating he became a US Marine in 2004 and was stationed in Jacksonville, NC. We married right after his training ended and lived there for 8 years. Although, the 8 years were broken up with deployments. During long deployments I moved back to FL due to medical reasons. My hubby just ended his tour in the Corps and we are settling back in Dunedin. So if anyone knows anyone who wants to hire an honorably discharged Marine for more than part-time (you know, so we could actually pay our bills), that would b awesome ;)

Name some bad habits you have: Checking (more info here), not resting when my body says it needs to rest -but seriously how can I when I have tons of stuff I need to do? Always being sick is sooo annoying! Am I right? You know I am.

Name some places you have worked: I have had several jobs over the years, but they all ended ether by hospitalizations or moving. Some of those jobs/places would be: Gymnastics coach (I was a gymnast for 10 years), Victoria's Secret, and Neilsen (market research). I was also in school for a chunk. I've done a little freelancing here and there, but now I'm a SAHM.

Friday Fluff

Friday Fluff

I would live on coffee, dark chocolate, and red wine if I could.

Dogs shed only twice a year - the first half, and the second half.

 Always make more food than you intend to eat because no mater what it is, the little ones are going to wan some. If you already have it made, it just saves time/effort.

 Even with my allergies raging, I would rather be outside than stuck in the house - I mean, that's what inhalers are for, right?
              
There is a very fine line between the amount of coffee needed to function and the amount that will cause you to be up half the night. -and also- How much coffee does it take to equal the energy of a 3 year old? The world will never know.                      

 If you give a Kelly a cookie, she's going to ask for a glass of milk... When given the chance, my husband WILL embarrass me.

The R Word

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  It was late afternoon and my mom was cooking dinner. My sister was... well, I actually don't remember what she was doing, and I was in the living room watching TV. Suddenly I heard shouting outside and something hit the front of our house. Startled, I looked out the window. Standing outside my house was the girl who lived down the street from me, shouting and throwing rocks at the front of my house. we went to school together, and for some reason we just never really got along. We tolerated each other. I thought she was a show-off and she thought I was too. I had probably done something or said something at school that day that peeved her off, I don't know. I threw the door open and was shocked at what I heard her yelling. " Melinda's sister is a retard!", "Retard!", "Retard!" "Melinda's sister is retarded!" Each verbal assault was accompanied by rocks hitting my house. The shock quickly faded and anger took over. I ran across the yard and yelled for her to "Take that back!" She kept shouting it and shoved me. I broke her nose. Right there, in my front yard, for all the neighbors to see. I probably should have felt bad or at least a little scared because people saw it. I was, after all, a total goody-goody. But I didn't and I still don't. My dad was watching from the front door, half upset by my outburst and half proud of how I defended my sister. I don't remember anything else that happened that day. I didn't get in trouble aside from a lecture about how resorting violence isn't the right thing to do. 

  I learned how to deal with things like that better and by high school I calmly asked people to please not use that word. If they asked why not, I explained it to them. Everyone I spoke to respected my request and I never heard any of them intentionally use that word in my presence again. When the occasional slip-up happened they always sincerely apologized. Generally, people use this term in a completely benign way and have no idea what the power of that word actually holds. Once they find out, as with most other things that are shrouded in ignorance, they understand better and it changes their perception and behavior. It is for that reason that I am a firm believer in spreading awareness.

  March 6th was the annual "Spread The Word To End The Word" 
awareness day




What is Spread the Word to End the Word? Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people. Learn more about this campaign here 

  The R-word fosters LONELINESS 
“It hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making “retard” jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.” – Joseph Franklin Stephens, Special Olympics Virginia athlete and Global Messenger As evident with my childhood confrontation, there are times, situations and personalities sometimes involved that may not be best suited for an immediate intervention when you hear someone use the R-word.  It simply may be best at times to walk away from a situation, but that doesn't mean you can’t still do good after walking away. 
It Starts With A Voice is an amazing facebook page chronicling the journey of a wonderful family in their quest to end the r-word. If nothing else, please watch this video. I just did and now I'm in tears, happy tears. Other resources to check out (please do!): The World Of Special Olympics NYT: A Word Gone Wrong Barrington Patch: Spread The Word To End The Word denverpost.com The Hurtful Effects Of The R-Word written by Eddie Barbanell from the hit movie “The Ringer"

My Sister


I have a sister (2 yrs older than me) and anyone with a sister knows how is is both annoying and amazing. My relationship with my sister has always been just like any other sibling relationship. We fought growing up and had our fair share o sibling rivalry. My mom recently told me about one incident when we were quite young (young enough that I don't remember it). We were eating dinner, my sister and I were sitting on opposite sides of the table. My sister started to yank the table towards her, so I yanked it right back. This went on for a while, the two of us yanking the table back and forth. My mom was sitting there, laughing, and couldn't help but enjoy the sibling squabble that was so "normal" being displayed in front of her.

  Why would my mom be happy about a "normal" sibling squabble? Because everything else was so "abnormal". My sister has severe disabilities. She has been diagnosed with sever (like, farthest end of the spectrum you can get severe) autism, cerebral palsy, and epilepsy. As a child and teen she was very abusive (towards herself and others) and our mom was constantly covered in bruises. She actually broke our mom's cheek bone once. Many people told my parents to write her off, to put her in a special facility. They never did and never would. My parents' strength was and is superhuman. There wasn't a lot of resources then, so our mom would come up with ways to adapt things for my sister. Her innovation is incredible. My sister needed a bed that was safe, but she was too big for a crib - so my mom and dad made one out of pvc pipes to fit a twin bed. They covered the pvc in large pool noodles and then our mom hand sewed strong mesh around every side. My sister would rip the mesh almost every night and my mom would sit there and sew it back together the next day. She also came up with pj's that she couldn't get out of but buying denim vests and jeans and sewing them together with a zipper in the back to make soft denim coveralls.

Growing up, I loved my sister but man did she get on my nerves! Family outings were dictated by whether or not my sister would allow it. If she was having a bad day, we canceled. If we actually went out and then she abruptly needed to leave, we did. Growing up this was annoying and sometimes hurtful. I would be excited to be going somewhere only to have it canceled because my sister was acting up. I understood it and knew it was right to cancel but the "child" part me was angry. She still can get on my nerves. She has always loved music and needs something playing at all times. She also loves Raffi (not just any Raffi, one particular video on repeat) and prefers that be playing at all times as well. Now, in all fairness this is a major improvement. For years (I mean like 10 year strong!) she loved Barney. Yeah, I don't think I need to explain that one at all. You all are groaning right along with me. Seriously, you know it's bad when you catch your dad signing Barney songs in the shower and when you ask him about it he has no recollection of the event at all. Or when you hear it playing in the background of your dreams. Yeah that's fun, let me tell you! She is non-verbal, but very loud. The neighbors can hear her screaming with all of our doors and windows closed. I love her to death, but she can be such a pain in the butt!

I'm allowed to say that because I'm her sister. She will be 30 soon and still lives at home. She is still as loud as ever but much calmer. She seems happier, more relaxed. That makes me so happy. There are still rough days and her health is slowly getting worse with every passing year, but my family is committed to giving her the best life we possibly can.

My childhood may have been different, but I wouldn't want to have any other sibling in he world.