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: