Reflections On Purple Day 2012

So… it is the day after Purple Day 2012.  Yesterday I wore my Anita Kauffman T-Shirt and my purple Buff headwear… I was reflecting on Adam’s week last week in the video EEG room… trapped… with only marginal responses.  The doctor suggested it would be a good idea to take pills.  Skinny butt said that, if he had another big seizure, he would, but unless he had one, or could have a definitive diagnosis, he would not take them.

Jump forward three whole days.  Ironically… on Purple Day… the International Epilepsy Awareness day… He had another major seizure.  He went to spend the day with his friend at a local large university.  It was a day like any other.  Late afternoon… my cell phone rings.  It’s Adam.  Adam NEVER calls me.  He texts me… he sends me jokes… he never calls…

My first thought… he got hurt or mugged…

Nope.  He had a seizure.  Sixty miles from home.  Thirty miles from me.  I know he’s 20, but he’s my little boy.

How do I find one skinny little (6 feet tall) boy on a huge college campus?  You keep calling since he is awake and kind of alert and see if he can help you navigate.  Fortunately his friend got out of class and helped, too.  I was never more relieved than when I saw them walking across campus… his friend steering him the way I used to when he was little and playing with his game boy.

So… now we start the Lamictal and see if that keeps him from seizing again… and we start counting officially… we are one day seizure free for him… 19 months seizure free for Amandya… the adventure  continues…

The Saga Continues…

So… it has been an amazingly long and awful week.  I feel like I got hit by a truck, physically, from the stress.  I feel like I’ve been beaten up by a rabid baboon with a baseball bad in one hand and a taser in the other hand.  I’m ready for the baboon to quit.

In the awfulness (well, that word isn’t a good word, but it did pass spell check so I guess it IS a word) of the week, the news that I was right and that we now are the proud owners of two kids (neither actually “kids” any more) who have epilepsy.  Adam’s been having seizures that no one realized were seizures for years.  I feel like a horrible parent.  I didn’t need help feeling like a horrible parent this week… but I will be fine.

Adam has been having these…

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

His Tonic Clonic seizure from just before Christmas was the impetus to go see the neurologist.  I’m worried that this may be getting worse.  I’m worried that it will get worse.  He doesn’t think he wants to medicate the myoclonic seizures away.  He has been having them for so long (years and years… even his pediatric neurologist blew them off as nothing so I guess I shouldn’t beat myself up too much… but years and years and I didn’t help him be fixed).

In the next few weeks, he will have his brain MRI and his 20 hour EEG.  I didn’t realize that they would hook him up in the doctor’s office to the wires and have a monitor hooked up to him to gather all of the information for almost a whole day.  A month from tomorrow we will go back to the doctor to find out what all of his findings are.  Depending on what he finds, there may or may not be more tests.

If you see a pattern of  ’twitches’ that include arm jerks and neck jerks but that occur when you are having a perfectly normal conversation or just at random times (not when they are falling asleep, that happens to most of us)… pay attention and push people to pay attention too!!!

Yes, I will be fine.  Yes, I will eventually stop beating myself up over everything.

For now, it is who I am and what I do… and I’m trying to deal with having to broken kids who I feel like I’ve let down…

A Whole New Chapter Begins

It isn’t like I thought life would get boring (or even normal or anything) but I could have lived with the seeing out of 2011 being quieter.

Tuesday we had Amandya’s neurologist appointment.  Dr Reardon assured here that he would be good with her seeing him until she is into her early 20s.  That made both of us go whew.  He also said that he would do an EEG (sleep deprived) that is coming up tomorrow at noon to see if she can start to be weaned off of her Keppra.  It is a good thing.

Wednesday she had her psychologist appointment and everything went well.

Wednesday night I got a phone call on the house phone from Adam telling me that one of his bud’s from high school moved back into town and he was going to hang with him for a while.  He might decide to stay the night and play music and video games.  I made sure I told him to call to let us know for sure if he was staying and he said yeah, sure, no problems.  He knows we worry and would much rather lock the door if he isn’t going to be coming home.

An hour later I got a call on my cell phone.  It was a very polite, very rattled friend from high school telling me that Adam had a seizure.  Actually, he said Adam passed out.  I went fishing and figured out that what poor Brenden was describing wasn’t passed out, it was seized.

His eyes were open and fixed
He was unresponsive
His arms were flexed and jerking.

I calmed poor Brenden down (all the while realizing that I’m supposed to be freaking out at this point.  I’m supposed to.  Normal people would be) and told him he did good and that Adam would be okay.  He said that he was going to give Adam a drink of some pop (Manzanita… Mexican Apple Soda) and bring him home in a bit when he was back to himself some more.  He didn’t end up waiting till he got back to himself.  Nearly, not quite.

Twenty minutes later (he lives a couple blocks away) Adam was standing in my bedroom doorway, lips absolutely white, eyes not quite focused.  He was semi coherent and complaining of being tired and having a headache.  He fell asleep on the couch to the Christmas tree lights.  He slept two hours or so and then started talking.

He remembers feeling pressure on his forehead.  He remembers feeling like he was getting one of his shivers/twitches and the next thing he remembers was his headache and Brenden trying to help him come around.

Since then he has had the feeling like something isn’t right.  Thursday he couldn’t remember where he was when he was sitting in the car with dad at the light at Walmart.  This is somewhere he hangs with his other friend and has walked many times on his own.  He couldn’t figure out what the ball park was when he passed it on the way home (again, something he passed all the time) and the field (easement near our house) looked all wrong and too empty (it hasn’t changed in months and months and then it is only that the grass is taller when there is normal rain).  He’s said that the back yard doesn’t look right.  The dog doesn’t look right.  Things are just kind of about a step out of time wrong.  Kind of like the polar opposite of DejaVu.  Hope (lady from Facebook) said it sounded like Jamais vu and it really does.

This had to happen when everyone is going on vacation for Christmas/New Years.  No doctors are any where around.  Eeesh.

So we are going to try making him an appointment with Amandya’s neuro (his old neuro) when we go in tomorrow for her EEG.  I won’t get lucky enough to get him in this year, but I guess that is to be expected.

Looking at his shiver/twitches (the ones that start at the base of his skull and sometimes make his face twitch… sometimes make both arms flex and twitch) I’m starting to think more and more that they are Myoclonus seizures.  He has brushed them off for the longest time, and said that as long as they aren’t affecting his day to day life adversely he didn’t want to see anyone.  Now he’s willing to see the doctor.

I don’t know if he will brush it off as nothing to be concerned with, or not.  I’m hoping he takes everything into account and really listens when it comes time to take Adam in.  And I hope we don’t have another tonic clonic event no matter how short (Brenden claims it was seconds).

It looks like December 21, 2011 is a lot like January 21, 2010… another day like no other.

A Book In Progress

Well, I’ve now decided that it is time to get off my butt and get going on wide scale book writing.  I’m working on an RA book (rheumatoid arthritis) and have officially started “A Day Like No Other” about getting diagnosed with Epilepsy.

I would love to have people’s stories to add in.  I will gladly obfuscate your identity if you don’t want people to know who you are but want your story out there so other people can learn.

I can let you know how to get me your stories if you let me know you want to help.

thanks

=)

and from Kaitlin’s Cauze…

thinks without a brain the ta ta’s don’t matter. In Your Face Fact- epilepsy is as common as breast cancer and takes just as many lives. Let’s save the brain so we can find two cures!

On Mother’s Day… Moms Rock…

Okay… so… I’m quiet for… ENTIRELY too long… then… POW… way too much writing all in one day… eeesh.

I simply HAVE to share this though… (too much capitalization?… tough!)

Was cruising Facebook this morning (before anyone around the house got up…) and I got redirected to the blog of a mom of a special needs kiddo.  His name is Max and he has Cerebral Palsy.  The blog, Love That Max, is awesome.  Two posts, about moms, are great to make moms of special needs kids (and any mom who needs to be reminded that she is doing a wonderful job) are great to read… and re-read… and re-read…

Top 20 Reasons Moms of Kids With Special Needs ROCK

and

20 MORE REASONS MOMS OF KIDS WITH SPECIAL NEEDS ROCK

we really do kick butt.  Moms do… Moms of Special Needs kids SO INCREDIBLY do…

I read these posts and think about my babies.  I think about my my niece and her needs and her very special mom.  I think about my mom and realize that now I’ve become one of her special needs kids not just one of her kids.  I think about all of the wonderful moms I know and who I have come to know through our adventures in special needs (mine, the kids… a whole passle of special needs… and the special needs I’ve been slogging through as the adventure we are walking progresses).

Here is sending virtual hugs to all the moms out there… and special warm and understanding hugs to the moms of special needs people.

TSO’s Beethoven’s Last Night

For Mother’s Day, we went, last night, to TSO’s Beethoven’s Last Night.  As everything TSO does, it was incredible.

It struck me, though, that until you have to realize and understand, you really don’t.

I watched my squirrel girl most of the concert, just making sure she was okay.  She was.  And… feeling kind of stupid… I watched people in the audience.  They were okay too…

Why was I keeping half an eye out even while I was loving the two hour concert?  (The story, incidentally, was awesome… every bit as good as the Christmas concerts)… Until you realize, personally, that the light show may cause seizures in sensitive people, you really don’t REALIZE it.

The music is amazing.  The light show is amazing.  But I think there should maybe a word to the wary that it is possible.  I did a search this morning and I didn’t find anything except posts that ticked me off… “may cause seizures in the weak”… REALLY… people with epilepsy are not weak.  If anything they are actually stronger in so many ways because of what they have to go through every day… eesh…

I don’t want to dump on TSO… quite the contrary… they are truly incredible musicians… and I don’t want to single them out… I know they are not the only ones that use this kind of amazing light show… but It is a general commentary… people need to be cognizant of taking people to concerts… I didn’t even THINK ahead of time that they use the lights that they do (and we had been to TSO concerts before) that if Squirrel had been sensitive to lights we could have been carrying her out. I feel like such an idiot for not thinking… not realizing.  I know that it doesn’t affect her… I KNOW it doesn’t… she plays with strobe lights just to mess with her friends’ heads.  But what if it did and what if she was and what if I had gone NOT thinking…

That said… it really was an amazing concert and the story made me smile and laugh and cry.

Amandya?  She spent the concert enjoying the concert and texting her sweety.  She found someone who appreciates her wonderful qualities and understands seizures and what to do even before they became an item.  makes a moms heart smile.

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

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