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 ;)

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 çevik, 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

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. 

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 pressure, digestive 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

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.