The Pressure To Be Perfect

As I've been reading others' posts for NEDAwareness Week and exploring the NEDAwarenss website, I came across this post that I felt needed to be shared. It resonated with me on such a level that it was as though Claire Mysko plucked it from my subconscious. So much of this is exactly what fueled my eating disorder that I can't just pass over it. In fact, "Perfect" was such arriving force in my life that my husband (then boyfriend) saw what it was doing to me and made it an off-limits word. His one caveat- It was encouraged when referring to how perfectly-imperfect I (and life in general) was/am/is. So this article is pretty great. I could give you a synopses, but as I'm reading this I can't find a place to break it. I want to put the entire thing in quotes, lol. So I've decided to do something you're not really supposed to do (in the "blog world"), but I must. I very much encourage all of you to follow my links to her post on NEDAwareness's website, as well as the link provided there to her original piece. 

5 WAYS TO HELP GIRLS RESIST THE PRESSURE TO BE PERFECT

By: Claire Mysko (Adams Media). These tips are adapted from You’re Amazing! A No-Pressure Guide to Being Your Best Self  

Girls today are told they can do anything. Unfortunately, the message they’re often getting is that they have to do everything--and please everyone while they’re at it. All this pressure is adding up to big time stress. According to The Supergirl Dilemma, a study conducted by Girls Incorporated, more than half of girls in middle school reported that they often feel stressed. By the time girls get into high school that number jumps to 74%. One third of all girls in grades 3-12 said they often feel sad and unhappy. 

When girls get caught up in the quest to be supergirls, they are less likely to feel confident in themselves and more likely to struggle with low self-esteem and poor body image. Here are five tips to help the girls in your life tackle The Supergirl Dilemma.

Does the pressure to do it all sound familiar? Supergirls and Superwomen hear the same voice, and it says “you’re not good enough.” Remember to give yourself a break and take time for healthy stress relief. If we want to break this damaging “super” cycle and set positive examples, we have to start with ourselves.

Teach girls to be savvy and critical media consumers. Resist the urge to simply lecture about what you think is inappropriate. Instead, ask them what they like about the movies and TV shows they watch and the magazines they read. What do they dislike? Talk about the difference between fantasy and reality by showing girls real examples of retouching. Point out how often retouching is used to make models and actors look artificially flawless.

Encourage girls to exercise their bragging rights. Girls are often hesitant to talk about what makes them amazing because they don’t want to be seen as conceited or they feel like they’re not perfect enough to be proud of themselves. Turn that thinking around by challenging girls to take pride in all of their amazing qualities, not just their achievements. Ask a girl what makes her amazing. If you get a sheepish shrug or an “I don’t know,” press on. You can spark the conversation by sharing a few of her qualities that you think are amazing, but don’t let her off the hook until she can say this sentence out loud: “I’m amazing because…”

Discuss the value of making mistakes and taking healthy risks. Many girls are so focused on being perfect and doing things “right” that they miss out on valuable opportunities because they are so afraid of failure. Share a mistake you made or a risk you took in life that helped you get where you are today.

When girls talk about the pressures they feel, the best thing you can do is listen. Don’t judge, interrupt, or get upset. Remember that what girls need most of all in their lives are supportive adults
who take the time to hear what they’re saying.  

Amazing Girl

Asks questions

Makes mistakes and learns from them

Talks about her feelings, fears, hopes, and dreams

Tries new things

Supports other girls

Is proud of her accomplishments, no matter how big or small

Knows three trusted adults she could turn to if she had a problem

Knows how to set boundaries and say no

Takes care of her body, mind, and spirit

Supergirl

Is afraid of not knowing the “right” answer

Makes mistakes and agonizes over them

Keeps it to herself when she’s stressed or sad

Doesn’t take on new challenges

Is jealous of other girls’ successes

Feels like no accomplishment is good enough or big enough

Wants adults to think she is happy, even if she doesn’t always feel happy

Sometimes does things she doesn’t want to do if she thinks people might like her more for doing them

Wishes she could be smarter, prettier, more popular, more athletic--the list goes on

About Eating Disorders: NEDAwareness 2014

NEDAwareness Week 2014 is officially underway! What is NEDAwareness Week? Go here, and here to find out more ;) 

As the week gets into high gear, I feel it's important to put up a basic info post.           

Here's some general info from the National EatingDisorder Association for NEDAwareness Week: 

ABOUT EATING DISORDERS

What is an Eating Disorder?

Eating disorders – such as anorexia, bulimia, and binge eating disorder can include extreme emotions, attitudes, and behaviors surrounding weight and food issues. According to the American Psychiatric Association’s Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), these are the basic characteristics of some of the most common types of eating disorder:

Anorexia Nervosa:

• Restricting food intake to below the requirements for a particular individuals physical requirements
• Intense fear of weight gain and obsession with weight and continual behaviors to prevent weight gain
• Inability to recognize true body shape or recognize the seriousness of condition
• May or may not use binge eating and/or purging behaviors

Bulimia Nervosa:

• Eating an unusually large amount of food at one time followed by compensatory behaviors (such as vomiting, taking laxatives and/or excessive exercise) to prevent weight gain
• A feeling of being out of control during the binge-eating occurrence
• Self-judgment largely based on weight and shape 
• 

Binge Eating Disorder:

• Recurrent situations of eating an unusually large amount of food at one time
• A feeling of being out of control during the behavior
• May have feelings of shame or guilt towards eating which can lead to eating alone
• May eat until the individual is beyond full to the point of discomfort
• 

Note: There are several other types of feeding or eating disorders outlined in the DSM-5. Many people may not have every symptom of a disorder, but may still receive a feeding or eating disorder diagnosis. If you or your loved one is experiencing significant discomfort surrounding food that interrupts basic functions but does not meet the above criteria, you should still seek professional help.

***I will be addressing those later in the week*** 

Is it an Eating Disorder?

A popular misconception about eating disorders is that if someone has one, it will be obvious by their low weight and starvation habits. However, those suffering from eating disorders can be of any weight and are often adept at hiding their illness. To help with early detection, here is a brief list of eating disorder signs, symptoms and behaviors to keep an eye out for as they may be indicative of a bigger problem:

• Makes frequent comments about feeling “fat” or overweight
• In general, behaviors and attitudes indicate that weight loss, dieting and control of food are becoming primary concerns
• Evidence of binge eating, including disappearance of large amounts of food in short periods of time or lots of wrappers and containers indicating consumption or large amounts of food
• Evidence of purging behavior, including frequent trips to the bathroom after meals, signs and/or smells of vomiting, presence of wrappers or packages of laxatives or diuretics
• Develops food rituals (e.g. eats only a particular food or food group, excessive chewing, doesn’t allow foods to touch, etc.)
• Skips meals or takes small portions of food at regular meals
• Hides body with baggy clothes
• Maintains excessive, rigid exercise regimen—despite weather, fatigue, illness or injury—because of the need to “burn off” calories
• Drinks excessive amounts of water and/or uses excessive amounts of mouthwash, mints and gum

How Can I Help?

When initiating a conversation with someone who may have an eating disorder, it is important to remain supportive, non-judgmental and let them know that they are not alone. Here are some recommended Dos and Don’ts of talking to someone about their eating disorder:

Do:

• Learn the difference between facts and myths about weight, nutrition and exercise

• Ask what you can do to help
• Listen openly and reflectively; be patient and non-judgmental
• Talk with the person in a kind way, when you are not angry, frustrated or upset 
• Explain the reasons for our concerns, without mentioning specific eating behavior
• Ask if he/she is willing to explore these concerns with a healthcare professional who understands eating disorders
• Remind your loved one that many people have successfully recovered from an eating disorder

Don’t:

• Invade privacy and contact the patient’s doctors, friends or others to check up behind his/her back
• Demand weight changes (even is clinically necessary for health)
• Insist the person eat every type of food at the table
• Make eating, food, clothes or appearance the focus of conversation
• Offer more help than you are qualified to give

CALL THE HELPLINE NOW

Call NEDA's toll-free, confidential Helpline, Monday-Thursday from 9:00 am - 9:00 pm and Friday from 9:00 am - 5:00 pm (EST)

1-800-931-2237

Kicking Off NEDAwareness Week 2014

So there's this really awesome thing is going on this week hosted by an incredible organization. It's called NEDAwareness Week by National Eating Disorder Assoctaion (NEDA). Aside from being an incredible force for raising awareness, NEDA also has a helpline, screening tools, and information not only for those sufferering and those in recovery, but also parents, siblings, peers, coaches, and teachers. I participate in NEDAwareness Week last year and loved it! I met some incredible people, made lifelong friends, and gained awesome resources to pass along. 

This year's theme is "Get In The Know"

 Get In The Know(from NEDA's site)

Our Theme: "I Had No Idea"

This year's NEDAwareness Week theme is "I Had No Idea" to raise awareness towards the significant impact eating disorders have on individuals, families, and communities across the nation. The more people who learn about these life-threatening illnesses, the more lives we can save. Last year, 100% of U.S. states hosted NEDAwareness Week events and activities. Additionally, 51 international countries participated in raising awareness. This year we strive to surpass these numbers, and have everyone get in the know and do just one thing to raise awareness!

Our Mission

The aim of NEDAwareness Week is to ultimately increase outreach and awareness of eating disorders and body image issues, while reducing the stigma surrounding eating disorders and improving access to treatment resources. Eating disorders are serious, life-threatening illnesses - not choices - and it's important to recognize the pressures, attitudes and behaviors that shape the disorder.

What is NEDAwareness Week?

NEDAwareness Week is a collective effort of volunteers, including eating disorder professionals, health care providers, students, educators, social workers, organizations and individuals committed to raising awareness of eating disorders.  The impact of increased outreach efforts leads to a greater chance of people seeking out resources and help for an eating disorder, which ultimately saves lives.

What are the Key Messages of NEDAwareness Week?

This year the National Eating Disorders Association is stressing the need to address eating disorder misconceptions - as many individuals, families, and communities are not aware of the often devastating mental and physical consequences - and highlights available resources for treatment and support. We urge you to talk about the pressures, attitudes and behaviors that shape these disorders with your family, friends, colleagues and community by doing just one thing during NEDAwareness Week. Learn more about the key messages for 2014 NEDAwareness Week and share with others so they can get in the know!

How NEDAwareness Week Works

NEDA asks everyone to do just one thing to help raise awareness and provide accurate information about eating disorders. NEDAwareness Week participants can choose from a huge range of ways to get involved: Distribute info pamphlets and put up posters, register as a Volunteer Speaker or host a Volunteer Speaker, post information on Facebook, or plan interactive and educational events like a community meeting, panel discussion, Barbie event, movie screening, art exhibit and more.

As a NEDAwareness Week participant you can be involved in any way that works with your schedule, resources, community, and interests.  These events and activities are vital to attracting public media attention - on local, national and international levels. 

Eating disorders are serious, potentially life-threatening conditions that affect both a person’s emotional and physical health. In the United States alone, 30 million people will be impacted by an eating disorder at some point in their lifetime. These conditions affect all kinds of people and don’t discriminate by race, age, sex, age or size.

If you or someone you care about might be suffering from an eating disorder, it is important to educate yourself and seek professional guidance as soon as possible because early intervention is key to successful recovery.

This page will provide a basic information about eating disorders, outlines how to spot a problem early and offers suggestions on how to talk to someone who is struggling.

Still have questions? Check out their FAQ section 

***This week I will be posting on here, Facebook, Twitter, and Pinterest for NEDAwareness Week. I invite and encourage everyone to share this information. Widely! Check out NEDA's site. Take the screening test - it's 100% anonymous, free, quick, and completely online. Don't be afraid to call the help line.

CALL THE HELPLINE NOW

Call NEDA's toll-free, confidential Helpline, Monday-Thursday from 9:00 am - 9:00 pm 

and Friday from 9:00 am - 5:00 pm (EST)

1-800-931-2237

Leibster Awards

I just had the privilege of learning that this really great blog, Healing Hopefully, has awarded me with a Leibster! 

No, seriously, she did. Even though I've been unable to blog lately and have been totally slacking, she has passed the torch to me. I'm extremely honored! I am also feeling that proverbial kick-in-the pants I needed to get back on track. Thank you, Megan. I needed that ;) 

I know a bit about the Leibster blogging award and what it's all about because I received it last year from Just Mildly Medicated (another super awesome spoonie blog). So here's the gist:

It's an awarded given by bloggers, to bloggers. It's reserved for "smaller" blogs - blogs with under 200 followers. It's pretty awesome. 

The questions Healing Hopefully asked us: 

1. Why did you start blogging?

It was initially just something to claim as my own. Something I did for me, at a time when all my other hobbies seemed to have vanished. Now, it has morphed into something I hope helps others. I blog about disabilities, chronic illness, autism, and eating disorders. I blog about the inqualities and ignorant preconcived notions drawn up regarding them. I blog about awareness and hope. 

2. What are your favorite hobbies?

Drawing, painting, crafting, reading, watching movies... 

3. If you could go anywhere in the world where would you go and why?

Oh my, that's a very tough question. There are so many places I've dreamt of visiting. Of those places, I've plucked my top bucket list destinations: First and foremost, my husband has always dreamt of going to Alaska. I would love to take him there, and hopefully hear the Denali wolves sing :) 

After that, my main Bucket List destinations are: 

France - I just must see the Louve before I die. I'd also love to see the French countryside and lavender fields. 

Scotland - My husband and many of my friends have been to Scotland for pipe band (that's Bagpipes and drums) competatitions. I missed out on them but have heard its wonderful. My husband says that 
if all the places he's been, he'd love to take e there. That says a lot because he doesn't like to travel 
and would rather be a hermit on the side of a mountain. Lol. 

4. What is your favorite color and why?

Purple. 

Aside from amethyst being my birthstone, there are many other reasons why I favor it. Purple balances the intense, stimulating reds and the calming blues. It garners spirituality and creativity. It's the color of the crown chakra - Sahasrara - responsible for the nervous system. For someone with Dysautonomia and Epilepsy it seems both appropriate and ironic that my color represents the nervous system, lol. Interestingly enough, I've been told that my aura is purple. 

5. Do you have any pets? 

Yes, I do! I have 4 dogs and 3 snakes. And I love them dearly :) 

6. What's your favorite way to pass the time in bed while you or your loved one is ill?

Definitely Netflix! Reading is a super close second and of course, wasting time on the internet (namely Pinterest and Facebook) are way up there. I also really enjoy sketching when I'm able to be upright long enough. 

7. What is your favorite food?

Chocolate!!!! Anything chocolate. Especially dark chocolate. I swear I would love to live off of chocolate and coffee if I could!

8. Can you remember a recent dream you had? What was it about?

Many of my dreams are very vivid and, when they are, I often wake up feelling disoriented and exasperated. The context of my dreams seem to dissolve as I become more awake and alert. As the minutes pass, the dream vanishes. I can only remember bits and peices from them, but the theme and energy remains as vivid as whilst I was in them. Lately, the themes and energys have revolved around the old/past/familiar vs the new/future/unknown with both content and anxious energies intertwining amongst the dreams' phases. 

9. What is your favorite thing about yourself? 

My fervent desire to learn. My empathetic abilities would be my top pick, but it is often more of a curse than a blessing. 

10. What is your favorite quote?

This is another question that simply I can not strip away to just one. So are here are a few of my favs. I like quotes and there are so, so many that I love. To see what I mean just check out my Words to Live By  Pin board ;)

"And those who were seen dancing were thought to be insane by those who could not hear the music." - Nietzsche             

"Even the darkest night shall end and the sun will rise." - Victor Hugo 

"Though she be but small, she is fierce." - Shakespeare 

My 11 Random Facts:

1. I have 2 children under the age of 5

2. Aside from Dysautonomia (both POTS and NCS) I also have Gastroparesis, Epilepsy, Neuropathy, and sensory sensitivities. 

3.  I love animals and consider myself an animal activist.

4. My favorite animal is the wolf. I simply love wolves.

5. I'm a vegetarian. The rest of my family is not. 

6. I'm a Marine wife. My husband was honorably discharged about a year ago. 

7. We've been married for 9 yrs. 10 this October. 

8. Ummmm.... This is getting tricky.... Oh! I'm 27 years old (haha, found an easy one!)

9. I am an eating disorder survivor. 

10. I love old movies. I mean, real old. Like 1920's-1940's old. 

11. My top 3 favorite books are: A Tale of Two Cities by Charles Dickens, We the Living by Ayn Rand, and Wasted: A Memoir of Anorexia and Bulimia by Marya Hornbacher. 

Being the small blog that I am, I don't really know 11 "smallish" blogs *embarassed* So, I'll be awarding 4 amazing blogs. Drum roll, please..... 

Sprinklings of Happiness

Radical Nuerodivergent Speaking

Autistic Chick

Fit vs Fiction

My questions for them are:

1.) What is your favorite food?

2.) Why did you start blogging?

3.) What is your favorite book?

4.) What is your favorite (or a couple) quotes?

5.) If you could be any animal, what would it be and why?

6.) Your taking a trip. Money is no object. Neither are physical limitations or obligations. Where do you go?

7.) What is something high up on your Bucket List?

8.) If you could give one piece of advice (on life, in general) what would it be?

9.) Do you have any pets?

10.) What's your favorite way to unwind?

11.) Name something on your wish list. 

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.

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. 

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 ;)