12/29/13

My New Dragonfly Friend (aka: port Huber)

I got a new accessory! No, it's not a purse, or shoes, or jewelry... It's an accessed Power Port with a Huber needle. 


Ok. If you're not a dysahtonimiac,  gastroparesis chick, or some other spoonie you probably have no idea wtf I'm talking about. Here's a quick synopsis:

Wikipedia's page on it says: 

"In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free."

Why a port? You see, I have terrible - I mean terrible - veins. This saves me from needing a peripheral IV ( the regular kind that goes in your arm) every time  need IV hydration, medicine, or other treatment. It can stay in for years and is completely under the skin, and no open wounds ( except when accessed) is always a good thing ;) I am extremely relieved to have this and be able to do all of this at home! My daughter is still a bit nervous about me having this thing in my chest, but for the most part she has decided she likes it because Mommy gets to stay home and doesn't have to go to the doctors for long periods of time (aka: hospitalizations). I totally agree :) 

With the special Huber needle, I think it looks like a Dragonfly. Don't ya think? I love dragonflies :-)

Tomorrow I'll start my first saline hydration therapy (I have no idea what the crap I'm supposed to call it. The Rx says "hydration therapy", so I guess that's what it is.) 

So right now, I'm rocking it! ... or at least trying to, lol.



12/20/13

Emotional Break of The Day

I don't usually post this sort if thing on here, but I do feel very strongly about this and it has weighed on me so hard that I just needed an outlet. Please, rest assured, after this I will resume my normal topics :) 


Anyway... 


I Just attempted to watch Blackfish... I got 12 minutes into it and had to turn it off. I had been so excited that this documentary was being made. Orcas have always been one of my absolute favorite animals. I was ecstatic about the attention it was getting. Finally! I had to see it!


After hearing more and more, I got a little more, and more nervous. Yep, my nerves were dead on. I. Can't. Watch. It. 

But I sure as hell can support it! 


As a kid, they were my favorite animal. They now hold the #2 spot, just beside my beloved wolves - which is really what Orcas are, the wolves of the sea. They have very similar social structures and hunting strategies. That's probably why I love them both so much. They are extremely intelligent, powerful, perfect preditors. 




What this film brings to light is ground breaking. And very much needed. It's just so, so horrible. So deplorably wrong. There aren't enough words to properly describe what happens when animals are used for entertainment. 


If anyone has ever gone to Sea World and saw a show, (I did when I was a kid. It was amazing.) Or, if anyone doubts the validity of the statements made against institutions like these, then please, PLEASE just TRY to watch Blackfish. I dare you. 

12/13/13

Fear, Anxiety, and Looking Inward

Many of us parents in the chronic illness community experience an intense fear and anxiety that we aren't doing a good enough job raising our children with our health circumstances. That our children will feel unloved, angry, or even sad that mommy/daddy can't play with them sometimes (and sometimes for long stretches of time). That our children will develope anxiety. Many parents I've talked to have said that their child/children becomes very emotional whenever they are in a flair-up. 

My daughter, for example, used to get full blown panic attacks any time I needed to lay down or go to a doctors appointment. I felt very guilty about that because her anxiety and fears are all well warranted. There have been many times in her short life when mommy has gone to the doctors and ended up being hospitalized for a week or so. Additionally, she knew that my needing to rest a lot tended to precede said doctors appointment. 

A while ago, I had posted in a support group about my struggles with this, asking for advice and/or support. Today, a friend of mine in the group responded with her own experience supporting and reassuring me that I wasn't alone. 
She wrote "My son is going on 10 and struggles with me being ill too. He often wants to play games with me but I just haven't been feeling well enough to. He'll start to cry and tell me that I don't love him and that he just wants to spend time with me. It makes me so sad." 

It is simply, yet profoundly heartbreaking. 

As I typed out my response, it just started to flow from me. And as it did, I was able to look inward. Resulting from her supportive comment, which was in response to my anxiety driven plea, came the answers I had been seeking the whole time. 

I posted this in response: 
There is hope. My sister (who is  2 yrs older than me) is autistic and also has cerebral palsy, epilepsy, and severe developmental delays. As a kid, I had an understanding of things far beyond my peers (still do sometimes) At home, we had sibling rivalry just like other siblings. She would spit at me, I would yell at her to stop, say she was so annoying, she'd spit again (she knew it was the one thing I hated most, lol) we'd go round and round. My family and I look back at those times fondly. Even though she was nonverbal, in a wheelchair, and developmentally around 18 months old (but much smarter) we were still sisters. We still bickered, and loved each other. We annoyed each other, and we stuck up for each other. I may have expressed anger and resentment towards her and my parents at times, but I never really was angry or resented having a sister like her. When I was around the ages of 8-9, I felt sad that I didn't get to have a "normal sister" and our family couldn't do "normal family" things like vacations, beach trips, getting share a closet with my big sister, having her help me get through middle school and all of its social  protocols. But as I grew older, (by age 13) I no longer envied those other families. I wouldn't change my sister for the world, and I am so proud that she is My Sister. I think a big part of how I felt ok with it and not left out was how my parents made it a priority to make time for me and what I wanted to do. I never felt neglected or overshadowed. Part of it is the age. I was like that, too. Later he'll remember these years and think of them differently. I do. 



Something I've started trying with my children is doing simple little gestures that let them know I love them and always want to be with them. I have instated an open door policy. I always invite them in when I'm ill and need to rest. They can go in and out, watch Netflix, cuddle with me, talk, or whatever works for us. If they get too rambunctious, they have to leave. Or, if I really need to actually sleep, I'll tell them they can hang out on the bed and watch TV, or play in the room but they have to let me sleep. So far, this policy has made a world of difference. They know I need to rest, but I still want to be with them. 

Another very important part of it: As soon as I'm up, I play whatever they were asking about when I had to say "not right now" and had to rest instead. Now they know that if I rest, I'll be able to play with them later. But if I don't rest I won't be much fun at all. 

Lots of hugs, kisses and cuddles. I sit with them and hold them at night as they fall asleep. That's their special time with me. You just have to find what works for you and your family. It doesn't matter what other people say (example: the theory that you shouldn't make it a habit to sit with them while they fall asleep. They'll never learn to put themselves to bed and they'll have attachment issues) It only matters what works for you and your family. Chronic illness creates a household that isn't "normal" and it shouldn't be held to "normal" standards. 

Then, I apologized for my comment being so dang long. And I'll apologize again for this post being so dang long ;)

11/12/13

Autism Speaks Doesn't Speak For Autistics


Autism Speaks is the most well known non-profit touting that they spread autism awareness and education. On November 13, 2013 Autism Speaks will descent upon Washington lobbying for political action budgets. 

Autism speaks already has a plethora of corporate, celebrity, and media sponsors.  Thus, allowing them to be a very strong force. But there is a stronger force out there contending with autism speaks. What is this force? The autistic community. The parents, friends, and autistic individuals themselves. The real advocates of autism. 

Many people think Autism Speaks seems like a pretty decent charity. On the surface, they kinda do. They lobby autism awareness and yada yada yada. But if you actually listen to what they say, to what their goals are, you will see the sinister organization for what it really is. 

Need some examples? Ok, here are some facts about Autism Speaks via 
The Caffeinated Autistic 
 http://thecaffeinatedautistic.wordpress.com/so-what-is-the-problem-with-autism-speaks/

  • Autism Speaks does not have a single autistic member on their board. Not even a token autistic.  
  • Autism Speaks only spends 4% of their budget on “family services”.
  • Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, eliminate autistics. 
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for "Autism Everyday", which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel. The producer of this PSA (Autism Everyday, 2006) explicitly admitted that the film was intentionally staged to portray negative images of autistic people and their families. See this here: http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living
  • Autism Speaks is responsible for the atrocity known as "I am Autism", a short film produced by the same person who directed the 3rd Harry Potter movie and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
That is NOT an organization who understands autism. It's definitely not an organization that believes in autism awareness and acceptance. This is an organization that believes that autism is a disease. That autism is a plight against humanity. That autism is something evil. Even scientist who research autism disagree with this idealology. 

This organization compairs autism to deadly diseases, and natural disasters. They do very, very little to encourage support of Autistics. They use tragedy models of disability to directly shut down the principles of anti-ableism, disability justice work, as well as the disability civil rights movement. In Autism Speaks’ Strategic Plan for Science 2013-2017, the authors uses language that inaccurately refers to autism as a "disease," and discusses autism’s "cost" and "burden to society," and how autism is an "urgent public health crisis." 

Their views are beyond concerning. These fear tactics are appalling. As their co-founder Susan Wright states, Autism Speaks wants to "ultimately eradicate Autism for the sake of future generations."

kerima ├ževik, parent of an autistic child, will be fighting against Autism Speaks tomorrow. I love this quote from her:

"(I) thought this was the United States of America. I can speak for myself, and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic."

"The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?"

She goes on to say that, "Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York" 
University referenced here: http://www.nytimes.com/2007/12/20/business/media/20child.html?_r=0

Suzanne Wright's entire disturbing post can be found here: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

Now, if for some reason none of this bothers you, then at the very least you should have some concern about where their money goes. According to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds to pay management salaries.

For further reading, please follow these links: 

An Autistic Speaks About Autism Speaks
http://m.dailykos.com/story/2007/05/19/336513/-An-Autistic-Speaks-About-Autism-Speaks

Say NO to Autism Speaks 
http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html?m=1

Autistics, Media, and Misrepresentation (Thinking Perons's Guide to Autism)
http://paulacdurbinwestbyautisticblog.blogspot.com/2013/07/this-is-who-i-am-this-is-what-i-do.html

Protesting Autism Speaks by Autisyic Hoya 
http://www.autistichoya.com/2012/11/protesting-autism-speaks.html?m=1

Alternet: Autism: the Art of Compassionate Living
Parents of autistic children strive to raise awareness in a world full of misconceptions about what autism really means. 
http://www.alternet.org/story/38631/autism%3A_the_art_of_compassionate_living

Autism Speaks Against Autistic Free Speech and Fair-Use Parody
http://m.dailykos.com/story/2008/06/22/540306/-Autism-Speaks-Against-Autistic-Free-Speech-and-Fair-Use-Parody

11/9/13

Maintenance

It seems like it's really hard for some people to grasp that having to be in the hospital from time to time is a perfectly normal aspect of dysautonomia. To others, it seems that being ill and in the hospital means that when you leave you'll be better - and that is what it normally means. But for someone with dysautonomia (or anything chronic for that matter). The truth is, being in the hospital is just a tune up. It's reestablishing equilibrium. 

This is my "normal"


Example: Last week something seriously irritated my gut. I have no idea what exactly it was, or if it was even something specific. For all I know, it might have just been my body being a defiant teenager. The rest of the week I was unable to keep anything down. Nothing. Not water. Not my meds. Nothing. I finally called my doc and he told me to get over there ASAP. Because apparently not keeping anything down for three days is a bad thing. So long story short, I'm in the hospital. Again. 

Sweet, sweet IV fluids... Oh, how I love you! 


And I'm facing the statements like, "Maybe you just need to try harder to eat even if you get sick." 
And questions like, "Well what are they doing to fix this?" and "What if you just do ___?" 

...*sigh*... 

Ummm, no, I can't try harder. No, I can't just do ___. And they aren't doing anything to "fix" this. This can't be "fixed".

There comes a point where you just have to accept that this is reality and part of this reality is hospitalizations from time to time. This one is mainly to give my gut a rest. I'm on IV fluids (miracle juice!), IV meds, and a strict clear liquid diet. After being here for a couple of days my vitals are back where they should be and I'm keeping some of my meds down. My stomach is still ridiculously irritated and I'm still needing IV fluids and meds. But once everything chills out, I'll be able to go home. I won't be cured and it won't be the last time this happens. This is just maintenance. And I'm ok with that. I'm just waiting for everyone else to be ok with it, too. 






9/30/13

Yay! It's October!

October is one of my favorite months (if not my #1 favorite month). It has so many awesome things going on! I LOVE fall, even though I live in Florida, which doesn't exactly get the best "fall" experience. That's actually the one thing I miss from living up north (and by "up north" I mean North Carolina). I miss the crisp air, beautiful foliage, and real pumpkin patches. But Florida has way more going for it, so it wins. 

Aside from October being the beginning of my favorite season, it's also the month of my wedding anniversary, and (duh) Halloween -which totally ranks right up (if not over) Christmas! 

It is also Dysautonomia Awareness Month. I know, it's awareness month to other things, too... But this is something with awareness so obscure that most medical professionals have NO idea what the heck it is let alone how to treat it. I was diagnosed with dysautonomia pretty recently (May, 2013), but I have actually been battling it for the past 10 years. There are so many aspecks of my life that it affects and I am finding myself advocating more and more out of necessity. I have to try and explain what they heck it is to people and justify why I have all the issues I do. That, by itself, is exhausting. Lucky for me, I have a wonderfully supportive family and have found others with dysautonomia through support groups. Those support groups have proved to be paramount to my quality of life. I never really thought much about support groups before, but I must say, with out them I'd feel very alone in my illness. They have become true friends of mine, even though I have never met most of them on person. Ok, all rambling aside, since it is Dysautonomia Awareness Month I'm at least going to give you my favorite links and resources. 

Dysautonomia (or autonomic dysfunction) is any disease or malfunction of theautonomic nervous system (ANS). The autonomic nervous system controls a number of functions in the body, such as heart rate,blood pressuredigestive tract peristalsis, and sweating, amongst others. Dysfunction of the ANS can involve any of these functions.

A fantastic place to start is Dysautonomia SOS They have an enormous amount if information and can help connect you with regional support and doctors. 
http://www.dysautonomiasos.com

Dinet is another great resource! What is it? From their website: 
Our Mission: To raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

The Dysautonomia Information Network (DINET) is a volunteer run 501(c)(3) nonprofit organization. http://www.dinet.org

For children/adolescents with dysautonomia check out Dysautonomia Youth Network of America http://www.dynainc.org

A couple of my absolute favorite blogs are run by amazing women with dysautomonia. Definitely check them out! 

Living with Bob(dysautonomia) http://bobisdysautonomia.blogspot.com/?m=1

Just Mildly Medicated http://justmildlymedicated.com 

Healing Hopefully http://medicalmusingsbymeg.blogspot.com/?m=1

9/26/13

Anti-Anti-Obesity




The anti-obesity campaign really irks me. If it was a healthy living campaign, focusing on healthy habits vs the numbers on a scale, then I'd be much more enthusiastic about it. Unfortunately, that is not what is happening. More and more the path is weight shaming and stigmatizing in the vein attempt to regulate our country's weight issues. The topic of weight stigma is far to vast for me to sum up in one post - especially since I'm exhausted and should really be asleep right now. Seriously, writing sentences that are comprehensible is really interesting with brain fog and neurological pain. So for right now I will focus on one area of this topic that is very important. Our youth.

Dina Zeckhausen is a psychologist and founder of the Eating Disorder Information Network. In an interview with CNN in 2013, Dina reported seeing kids in third and fourth grade who are already worried about being fat.

"There is so much emphasis on obesity," Zeckhausen said, "that there's a danger that we are going to produce a lot of anxieties in kids around weight."
See full article here


It seems like every other week (if not day) I'm hearing about some new way our communities are "fighting obesity" and each time it seems to be more infuriating than the last. Everyone has already heard about the "fat letters" sent out by some schools. Some say they're dangerous while others say that parents are being over sensitive. Honestly, if the schools were really trying to educate and advise families about health they would focus on teaching and focusing in healthy habits, not a number. Numbers do not indicate health.

There are many, many larger sized individuals who eat healthy, are very active, and have no health issues - except for what the scale says. Let me be clear, if someone (of any size) has a health issue, then treat that health issue. But that’s different than treating their weight as the issue. 


Carmen Cool, MA, LPC said it beautifully: “With all due respect, I need to disagree with you that we need this war on obesity. What we need, is to work together to end it. Not by making fat people thinner, but by recognizing and celebrating the truth of body diversity.  Weight is not the problem. The way we make assumptions about it is the problem. I want to live in a peaceful world. And a peaceful world starts with a peaceful self. Rather than fighting fatness, why don’t we help people of all sizes feel peaceful in the bodies they have.” 

see full article here: http://bedaonline.com/wsaw2013/weight-stigma-viewed-eating-disorders-lens-carmen-cool/#.UkJy_429LCT




I brought this up with my mom today and she immediately jumped in agreeing that it is ridiculous and dangerous. Aside from the obvious (obvious to my mom and I) health risks it poses, there is another very valid point she made regarding schools sending out "fat letters" that I had previously over looked - When there are students failing and struggling in reading and math, why would they focus on what the student looks like? Isn't that a bit of course? When there art, music, and science opportunities shut down by lack of funds why would the schools set their sites on the appearance of health (note the word appearance) with little to no regard for the individual student and their real health. Better yet, how is it even the school's place to decide who is healthy vs unhealthy based on a number? Oh, that's right, it's not.



If I am ever at a school (as a parent or otherwise) and I find out that the school has been sending anyone weight stigmatizing letters or promoting weight stigma in any way, I will be very upset. I will be beyond upset. I will be their worst nightmare.

9/25/13

DSM-5 Finally Fixes Anorexia Criteria!



This is long over due! The criteria for diagnosing anorexia has finally been broadened to include any weight - instead of the precious under weight "symptom". This help clear up the misconception that anorexia is a weight disease instead of purely a psychological one. With Weight Stigma Awareness Week in full swing I'd say this is a great time for the news! 

More than 55% of teen girls and more than 30% of teen boys report some kind of “disordered eating”. This means they exhibit symptoms like purging by way of self-induced vomiting, laxative and/or diuretic abuse, excessive exercising, restricting food consumption, binging, using diet pills, and even diabetics using insulin to regulate and manipulate their weight. 

“Before, patients were very sick before meeting criteria, and the evidence is pretty clear that if you interfere in anorexia before there’s been significant weight loss, the outcomes are much better and the illness is easier to treat in an outpatient setting,” says Kimberli McCallum, founder and medical director of eating disorder clinic McCallum Place in Saint Louis, in an article by Tara Haelle with Scientific America[1]. 

Before, many people fell into the EDNOS category[2]. EDNOS is the diagnosis given to any person exhibiting disordered eating but didn't fit exclusively into either the anorexia or bulimia category. 




So what was the problem with EDNOS? Usually the EDNOS diagnosis was not taken seriously by insurers, family members, or even physicians. This tremendously complicates treatment for an extremely deadly disorder. In fact, it's the most deadly eating disorder. 

Aside from the change to the DSM-5 criteria regarding a weight requirement are other changes. Instead of the previous psychological markers of “intense fear of gaining weight or becoming fat,” it now reads “or persistent behavior that interferes with weight gain, even though at a significantly low weight.” And the criterion "at least three missed periods" has been completely removed. It has also added that while using BMI to help establish severity, “the level of severity may be increased to reflect clinical symptoms, the degree of functional disability and the need for supervision.” Additions of “partial remission” or “full remission” have also been added to prevent recovering anorexics from being rebranded with EDNOS. I know that, for myself, there have been several partial remissions. These remissions I experienced always had some other element that wasn't there the first time around. I suspect it's the same for many others. 

The real challenge is going to be physicians and families seeing an over weight child/adolescence lose weight and actually investigating the weight loss methods instead of just congratulating them. Being complimented and praised is so addictive, not only to children and adolescents, but to anybody. The truth is that there can be serious health complications going on such as dehydration, digestive issues, cardiac issues, kidney and liver issues, and difficulty concentrating.  

These changes will hopefully help health insurance claims as well. Many insurance companies automatically refused any patients for overnight treatment if they were more than 85% of their ideal weight. 
This should also help obtaining more reliable research statistics as well. Yay!
This is a win, guys!!!  

[1] http://www.scientificamerican.com/article.cfm?id=expanded-clinical-definition-of-anorexia-may-help-more-teens&WT.mc_id=SA_sharetool_Twitter
[2] http://www.something-fishy.org/whatarethey/ednos.php 

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.