SAT Day

It is SAT day.  She got up this morning and was cramming for the test.  She is way stressed but she is actually pretty confident.

She had Peanut Butter sandwich and coffee for breakfast… her blood sugar was 99.

I haven’t been posting much… I’ve been stressing about her a lot.  Here PCP is driving me out of my tree and I am trying very hard to not dwell on what might be happening rather trying to concentrate on what is… Stupid, I know… but it is what it is.

She has just three weeks to go (Feb 11) till she hits her 6 month mark.  She is finding her confidence and is starting to believe that she might actually make it.  It is kind of interesting that her 6 month mark will be just days from her one year mark from when she was diagnosed.  That comes the day after the half marathon.  Hmmm…

What has been up with the squirrel…

Other than thinking about a career in law enforcement and classes at what she hopes will be Penn State… we have been dealing with uncertainty of her blood sugar.  She has been feeling very off a lot of days and her blood sugar levels (we are down to taking them just first thing in the morning most days) are really stupid… which has me stressing.

108
108
136
138
161
99

This is normal?  According to the PCP it is nothing to worry about because we TOTALLY OBVIOUSLY got an incredibly sucky meter that TOTALLY is always wrong and is always apparently randomly wrong… not just off compared to their numbers… it just makes them up as it goes.

Of course their HIGH QUALITY meters took 11 pokes to get ANY reading and one of them never would read anything… but ours sucks.  Totally?  Really?  Really Really?  Lord.

I will be glad to get into the ENDO mid February (more ominous things?  Makes you think) to see what might be going on.  I can’t believe that “it is nothing” is a DOCTOR’S answer when a reading is 247.  Even if the meter reads higher than theirs and even if it isn’t perfect, I would say it still trends reasonably accurate to itself and that is a number to make you think… coupled with the fact that when her numbers are high she feels crappy even before we take the levels….

So you see it has been a frustrating few weeks…

But today is a good day.  A positive day.  She is taking the SATs and she is starting to look forward to life.  This is a good thing.

Starting To Turn Austin Half Marathon Purple

Went for a ‘run’ this morning.  It’s 40 degrees.  It’s raining.  I’m determined to be ready for the half marathon on February 20th… one day shy of the seizures that led directly to Amandya’s diagnosis.  With any luck at all… 9 days after we reach the 6 month mark.

Saying that I know is tempting fate…

My ‘run’ this morning wasn’t as long as I was hoping, but the cold got to my problem child arm and I caved.  I made it just over 3 miles.

I’m pulling together my outfit for the run.  Shirt is coming in the mail that I will wear… I’m keeping an eye out for Dankin leggings… tights… whatever they are called… that are purple.  I have purple socks that I think will be good enough to keep my feet warm… and my hoody shoud be here either today or first of the week… yay.

It kind of irritates me that epilepsy (since we have an epilepsy foundation somewhat locally) isn’t one of the popular charities… so I am going to be a one woman band wagon.  I keep thinking that, given the fact that I’m ‘running’ with feet considerably puffy and wrists that ache on a good day, maybe my being in your face would be a good thing… at least inspire someone other than Adam (who seems to think I’m a big deal anyway)…

all in due time.

One Person At A Time

Be The Best of Whatever You Are
Poet: Douglas Malloch

If you can’t be a pine on the top of the hill,
Be a scrub in the valley-but be

The best little scrub by the side of the rill;
Be a bush if you can’t be a tree.

If you can’t be a bush be a bit of the grass,
And some highway happier make;

If you can’t be a muskie then just be a bass-
But the liveliest bass in the lake!

We can’t all be captains, we’ve got to be crew,
There’s something for all of us here,

There’s big work to do, and there’s lesser to do,
And the task you must do is the near.

If you can’t be a highway then just be a trail,
If you can’t be the sun be a star;

It isn’t by size that you win or you fail-
Be the best of whatever you are!

 

I’ve spent the last hour giving up and crying.  I’m so tired of reaching out to people who make a big difference for advice only to be told that I should be the 50,001 buffalo in the herd following the most beautiful wonderful buffalo do what that buffalo does.  I’m tired of feeling like I can’t make a difference in the big wide field of ignorance (Ignorance is a state of being uninformed (lack of knowledge)) that surrounds epilepsy simply because I can’t figure out how to make a big difference.  I can’t reach thousands or millions.  I can’t be a force to recon with.  I’m INCREDIBLY tired of being told that if I just use determined ink to sign a hefty donation check to THEIR way of making a difference then by making them more wonderful I could in turn make any difference.

For a while, I gave up.  I figured that I can’t do anything that matters at all so I probably ought to just be like all of the people who don’t bother to try (or all of the other buffalo who have tried to make their own differences only to be stampeded back into line with the herd… You better stay where you belong little buffalo… so they gave up trying…).  I even wrote what amounted to an I quit post for here.

The latest  advice that I be one of the herd stung really bad… probably because it came from one of the lead buffalo…

Duh… why would a leader (someone who is SO TOTALLY making a name for himself/herself) bother trying to tell another buffalo how to be a leader even if there is room for thousands of different kinds of leaders who impact thousands of DIFFERENT groups of people.

I sucked it up when I was told that the STATE CAPITAL isn’t important enough to host a 5k because it is out of the way.

I keep sending my mails and emails to the representatives that don’t bother to read them and who don’t bother to respond in under 4 months to the fact that I sent it anyway (note to really REALLY important people… they have AUTOMATED systems that will throw a bone to the losers (the losers who ELECTED your) who email you to make them pretend that the people you represent that are not huge companies actually matter.

I was all set to just say ‘#@&% IT’ and give up.

But I stopped.  Fortunately I have a couple of printouts that I have hanging above my desk that I read again… people who have said “thank you” for a piece of information or for being there or for listening…

I read them and I realized that I may not make any difference in the grand scheme of things.  I may never be heard by more than a couple hundred and then only in passing most of the time… kind of like an irritating little fly…

I may only ever be the tiny voice in the dark that only is heard by one or two… but if that one or two go on to make any other difference then I have made a difference.

I won’t give up.  The job that I must do is the near…

I won’t be silenced even if no one ever reads anything or hears anything I have to say

I won’t stop being the annoying pebble in the shoe of people who can make a difference but choose not to

I won’t stop listening or being a shoulder or trying to bring just ONE candle of light to someone because when it is TRULY dark, one candle can make a big difference

Okay… my pity party is over.  I will finish my coffee and go one with my day

We Have To Find A Way For This To End

I have been incredibly pre-occupied with Amandya and our latest drama (which I probably ought to start to chronicle here too… )… her blood sugar has started to weird out… and I have been distracted from paying attention to the world around me.  This morning, thanks to Facebook friends (Amandya makes fun of me because I have so many friends I have never met… but I have some incredible friends that I just… have never seen in person) I was reading this post this morning…

A DAY IN THE LIFE OF EPILEPSY

http://www.epilepsywarriors.org/blog.html

Yes, I completely understand that some people think that… It’s only fits, get over it and live with it.  I understand that this is one of MY flags and it isn’t one of everyone’s flags to wave.

But he was THREE YEARS OLD.  Three…

I can only imagine what this family is going through this new year…

We have to find a way to stop this.

I know Epilepsy isn’t popular.  It isn’t one of the glamorous diseases.

Susan… I’m grabbing this paragraph from your blog because it is very eloquent…

Epilepsy is the least funded disease in the country more than any other illness and that is just TOTALLY UN-ACCEPTABLE in my book. 50,000 people die from Epilepsy each year and that is more than most of the worst kinds of CANCER combined again I ask WHAT IS WRONG WITH THAT PICTURE!!!! It’s time we took a stand and really start spreading the word and awareness that this is serious and that unless we do something to get the necessary funding and FIND A CURE we are going to continue as Parents burying Children.

FIFTY THOUSAND PEOPLE die every year from Epilepsy.  That is equal to HALF the town I live in now.  That is FIVE TIMES the size of the town I grew up in… EVERY YEAR.

You can FIND YOUR CONGRESS PEOPLE here (go ahead, click it, it will open in a different window or tab).  You click your state… enter your zip code and click a button… it took me to a email form letter page you can fill in with my concerns.  It works best if you know your 9 digit zip code.  If you don’t… it takes you to a place where you can find it then go back and enter it in… Email… it will cost you TEN minutes of your time… not a dime other than what you are already paying to be on whatever computer you are on anyway (the gas to the library… the internet charge… the phone bill on your smart phone…whatever… not thing extra.

Contacting Congress is another Site to get to the same Congress people

Congress.org gives you not only information on your Congress person (based on your address) but also contact information to the Congressional Leaders (for both the Senate and the House)

Senators can be found on United States Senate page… many of them have direct links to their web forms to fill out the information you want them to have.

LET THESE PEOPLE KNOW we need to fund epilepsy research.  We can not continue to let our children die NO MATTER HOW OLD our children are.  Too many people have uncontrolled seizures.  Too many people are dying as a result of their epilepsy

It will take each person maybe an hour… and if you have to actually write a physical letter, it will take less than $2 to send the letters.

This matters.

Everyone Needs a Little Support

Round Rock is a city of 105,412 (roughly, as of 2009)
Georgetown has 50,885
Our local support group said that all three of the families who come to the local meetings (local as in 35 miles away) are pretty locked into their group.  that is wonderful.  they found a place that fits…
okay.. but if you do the math, I’m pretty sure that there are a few more people in the area who MIGHT actually have family members who have epilepsy or who have epilepsy in their family… a few more than the three people who are tied to the support group 35 miles away.  I understand that a group that has the support of the really big fancy hospital is great and that people from MILES away come there… but with gas back to nearly $3 a gallon and time more and more precious to some of us who would rather spend the time with our peeps rather than commuting to a place where peeps meet… I would think that maybe a closer alternative might be welcome.
Did you know that epilepsy isn’t picky about who it affects.  There are actually people who don’t have access to reliable transportation to get them to the Children’s Hospital and back once a month even if it means meeting with people who understand and who can relate.  Even if it means Pizza and Coffee and Pop.  I make the drive every blessed day to work and back and I don’t WANT to turn around after I go home to pick up my daughter (who is the most effected by seizures since she is the one who has epilepsy) and drive the whole way back into town to meet with people no matter how understanding those people are… no matter the number of impressive experts they have (duh… they are AT the hospital) willing to talk.
Frustrated?  yeah, just a little.
So here I am.
I know that I can not create a 5k single handed… I have found entirely too many roadblocks with that.  And as the economy gets worse, fewer people are willing to cough up money to help.  Maybe i will be able to help with the 5k that they might possibly maybe be planning for may not too far away.  Which is good and which I look forward to… to being in or helping with or whatever I can do to make epilepsy more understood.
In the mean time… I am here, frustrated because people don’t get it… don’t understand… don’t realize…
So… here I am… looking for venues for meetings. And I’m looking for sponsors to help with the snacks… and speakers…
I am going to find a way to give local people who can’t get to the established meetings an alternative… a way to meet with people who share their concerns.  A way to feel like they matter too.

2010 in review

I don’t really count this much as a real post, but getting the information in the mail today was great way to start the morning!

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads This blog is on fire!.

Crunchy numbers

A helper monkey made this abstract painting, inspired by your stats.

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 1,700 times in 2010. That’s about 4 full 747s.

 

In 2010, there were 76 new posts, not bad for the first year! There were 18 pictures uploaded, taking up a total of 18mb. That’s about 2 pictures per month.

The busiest day of the year was June 21st with 78 views. The most popular post that day was About Us.

 

Where did they come from?

The top referring sites in 2010 were facebook.com, android-vs-ipad.co.cc, digg.com, alphainventions.com, and networkedblogs.com.

Some visitors came searching, mostly for epilepsy journey wordpress, can people with epilepsy swim, +amandya wells, “her cast”, and “purple day”.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

About Us February 2010
6 comments

2

Past the Crisis, Having Fun and Salter-Harris Fractures September 2010

3

What people swimming with people with epilepsy should know June 2010
1 comment

4

SUDEP March 2010

5

She’s a Bad Ass… June 2010
2 comments

Committing to Posting at Least Once a Week in 2011

Okay… a re-dedication.  Just because it isn’t as HOLY CRAP with me right now doesn’t mean it isn’t just as or more important than ever.  I don’t want to commit to daily publicly, because I’m not sure I can do that in this blog.  But once a week I will post something directly related to epilepsy.  It may still be more of a human side than clinical, but I think people really need to understand the human side.  The people are the important part of epilepsy.  And I’m starting to think that maybe I really do have something worthwhile to say.

So here we go…

I’ve decided I want to blog more. Rather than just thinking about doing it, I’m starting right now.  I will be posting on this blog at least once a week for all of 2011.

I know it won’t be easy, but it might be fun, inspiring, awesome and wonderful. Therefore I’m promising to make use of The DailyPost, and the community of other bloggers with similiar goals, to help me along the way, including asking for help when I need it and encouraging others when I can.

If you already read my blog, I hope you’ll encourage me with comments and likes, and good will along the way.

Signed,

Amandya’s Mom
April