Hydrocephalus Awareness Month

September is Hydrocephalus Awareness month .

If you follow me on FB or Twitter, you probably know that already .

You might even be wondering why the month is almost over…. And I haven’t mentioned it at all on here .

I could take the easy way out, say I haven’t been on the laptop much– and blogging from my phone is a pain.

I could say I’ve been playing on Tumblr, and have just forgotten. 

I could point out all the other wonderful blogs about this month, and say that there’s nothing I could possibly add .

The list of excuses goes on. And in reality, they’re all half truths.

But…..that’s not all.

Things about this month just make me mad.

And since you’re reading my blog… I’m afraid you’ll have to indulge me.

First, why is one month any different from the others?
Yes .. having an awareness month is good for getting the getting the general public involved. But all of us who have it, or are deeply affected by it…. We should have this mentality all the time! We should always want to raise awareness.

Second, people are fickle.
On Twitter , people were all over RTing facts, trying to trend #hydrocephalus. Facts were also all over FB.
I mentioned on Twitter about contacting governments. Actually doing something to tell them we need more funding.
I got some RTs. A few people said that it was a waste of time to do so. Two people said they contacted their reps.
..
Really? Are we the same people preaching on Twitter & FB about needing more awareness?
What is that worth, if we don’t do anything to make a difference ourselves ?

Who are we to get angry that the world doesn’t care about our condition, if we don’t care ourselves?!

It seems like such a no brainer. But simply complaining about the lack of a cure , won’t change it.
We can’t will a cure into being.
We can’t wish for more research funding, & expect to get it.
We can’t keep hoping someone else will come along, & fight OUR battle for us. 

There are several hydrocephalus organizations around. National AND local. Find one, get involved.
Contact your government. Your law makers. Explain why we need funding.

Here is an event happening Friday. If you can, attend. Anyone from HA or the PHF can give you more information.

We–you and I– need to step up, and make a change. If for nothing else, so no one else has to go through what we do.

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Blog: My Broken Cranium

Oh my goodness. I’ve blogged three times in the past three days…. No one have a heart attack or anything. 😉

 

A friend of mine, (well, a Twitter friend, at least) has started a blog about living with hydrocephalus and bi-polar disorder.  You should check it out. The first post is great, and she is a writer, so it’s a good chance that even if you aren’t particularly interested in hydrocephalus or bi-polar disorder, it could still be an engaging read.

My Broken Cranium

 

Help the Hydrocephalus Association!

Some of you have probably seen the FB posts around, but Vivint is giving away 1.25 million dollars to charities- and the HA is in the top 20!!

This is good- because after June 11th, the top 20 will move on to a new phase- and the rest of the charities are out of the running!

So please, take a second and endorse the HA. 🙂  It’s a great organization and could really use the money.

 

<img src=”http://media.vivint.com/www.vivint.com/en/images/givesbackproject/givesback_banner_728x90_version_1.gif” alt=”Vivint is giving away $1.25 Million to charities. Help us win!” width=”728″ height=”90″ />

On Twitter? Join our #hydrocephalus TweetChat!

For anyone who hasn’t noticed the growing use of the ‘ #hydrocephalus ‘ hashtag on Twitter… we’ve started doing hydrocephalus chats on Twitter!

They’re fun to do (to me, annywayy) because you meet new people, and learn more about the condition. In the last two chats, I learned more about the ETV treatment than I’d ever known,  (And, I feel really awkward for not knowing it in the first place. Internet research, here I come!) AND “met” several new people, all of whom I’m now following, and vice versa.

Also, although I work with the Hydrocephalus Association, ( and love the organization!) these tweetchats aren’t hosted by any associations, organizations, etc. It’s simply a way for people with hydrocephalus to connect. Talk about anything you want, any organization you want, any support groups you want, et cetera. 🙂  My goal here is just to spread some awareness, and help people make connections they otherwise wouldn’t have. 🙂

Also, since everyone participating tags their post with “#hydrocephalus,”  it gets the #hydrocephalus hashtag around, in more people’s Twitter feeds. I’ve seen other Twitter chats get their topic to be a “trending topic,” which leads to even more exposure. 🙂

If you’re on Twitter, and want to join, you can click on the “#hydrocephalus” in any posts on twitter, or search for “#hydrocephalus,” and it’ll take you to a page that collects those tweets…. or an easier way… you can also join by logging in, then going to www.tweetchat.com and type in “hydrocephalus” in the box to follow the flow of the conversation! =)  This will also add the tag to your tweets for you, so you don’t have to remember!

We were doing a chat Sundays at 1, but that time wasn’t popular for people. So we tested out Tuesday nights last night, at 7 CST… and despite Twitter’s glitchiness, we had a wonderful turn out! 🙂  So, we’re going to keep the chat on Tuesday nights, and see how it goes!

Going to try and get a transcript up in the next day or so, check back!

Hydrocephalus Association- Oklahoma Partner

  All Ages Support Group Meeting

WHEN:
Saturday, June 4th,
WHERE:
Friendship Baptist Church in Owasso, in the New Beginnings classroom, at 7 pm.
WHAT:
This month, we’re lucky enough to have Dr. Nancy Merritt, D.O, out of Warren Clinic speaking with us.
She’ll be not only giving her perspective on caring for patients with hydrocephalus,and the doctor/patient relationship, but also answering any questions we may have for her.
If you have anything you’d especially like to hear Dr. Merritt cover when she speaks to us, please, send me an email and let me know, so I can pass the information along to her!
We hope to see you then! Not only are these meetings a great way to get useful information, they’re also excellent ways to network and meet and share information and resources with others with the condition.
As always, anyone is welcome to attend. Most of our members either have hydrocephalus, or are friends or  family members of someone with the condition – but anyone is welcome to attend.
Please RSVP by Monday, May 30th, so that we can make sure we have plenty of refreshments and any handout information we might have.
If you have any questions, please contact Tina Daniels at 918-694-9212 or owassosupport@hydroassoc.biz

Anyone into natural remedies?

It’s never really been my thing.. so I’m not even sure I have the proper term… But lately, I’ve been looking a little into it. 

Not as a substitute for seeing a doctor, or to avoid any & all use of medication, by any stretch . I do think there are plenty of things that require doctor visits, and/ or medical treatment. I’m just curious to see what other options are out there, and what merit they have.

What is the proper term? Homeopathic? Natural medicine? Alternative medicine? Might he a good place for me to start.”Home remedy,” Google searches can be a bit scary….

I’ve Googled a bit… But then again, that’s Google. Not always the most reliable source…  Any suggestions on good books, blogs, or websites?