It’s Been Forever…

This started out as my (our) journey with Epilepsy.  See… it says so right there in the URL of the blog. That’s what it was supposed to be.  That is what it was supposed to be.

So… I’m sitting here, proverbial pen in hand trying to wrap my head around all of the stupid days like no other.  I really don’t want any more of those days.  I really don’t.

I’m thinking of the litany of things that I don’t want to know.  RA… Sjogrens… Epilepsy… Aspergers… gastroparisis… COPD… and I wonder what all else.

Epilepsy… what started this blog… has taken its place at the edges of our lives.  Squirrel hasn’t had a seizure since 2010.  She and monkey butt have both gotten their licenses.  Neither are actively seizing.  Monkey butt hasn’t even taken lamictal in over a year.  It’s still there.  It is still a specter that haunts, but it only (currently) haunts the recesses and dark corners.

I hope it stays there.

RA/Sjogrens/Raynauds… those have their own special place in my other blog.  They are my burden, although they seem to be bleeding over into the lives of my children.  Monkey butt struggles a lot with his but he frequently forgets to take his meds and I don’t know how to help and not hound.

But here I sit… the cross I bought at Notre Dame Cathedral after we made it to the top and back down buried deep in my pocket. It’s wood.  It’s smooth edges are comforting.  It’s warm and it fits my hand.

This blog does not post directly to my Facebook page and that is good, at least for now. I may move the discussion later, after we have more answers but for now, it lies here not quite hidden but at least not where someone who is as scared as I am will quickly and easily accidentally run into it.  Sometimes hiding is okay.  Sometimes it is good.

This morning, as the house sleeps, I am very afraid.  Bear went to his December doctor appointment yesterday and they got to the point in his care that they are “ALLOWED” (that absolutely pisses me off that we have to follow the bread crumb trail laid out by the INSURANCE companies before we can get answers) to move on to the next in the series of testing.

Today we go for the Pulmonary Function test.  It was supposed to be scheduled in two weeks but when they took his oxygen levels at his appointment yesterday they moved it up to today.  In about an hour and a half we head out to where he will get this test done.  Today is Wednesday.  Tomorrow is Christmas Eve.  Monday we have a CT scan scheduled on his chest to see what it has to say.

He is terrified.  His nurse sister thinks it is not lung cancer… “only” COPD.  I’ve been digging.  And praying.  I’ve been trying not to vomit.  I’ve been trying not to cry.  I’ve been crocheting my ass off on a project that I dreamed up.  I’m trying not to vomit.  I’m trying not to cry.  The candle light flickers by my side.

So here I am… on yet another day like no other.  It’s a perfectly ordinary day.  The wind is blowing.  The street out in front of the house lays wet in the streetlights.  The dog (and my Squirrel girl) lay snoring softly in the next room.  My fingers and my knee are reminding me that I hurt.  I kind of didn’t need to be reminded, but there you go…

Keep me close today.  I think I need to be kept close today.

Why… How… mostly Why…

I’ve been quiet… too quiet… and I feel very guilty for that.  It’s been a long hard few months and I need to get back to finding myself.

This week, Adam has an epilepsy doctor appointment.  He has been seizure free for 2 1/2 months.  I face September with a sinking feeling… he has been seizing about once every three months… and we are coming up on that now.  I worry.  I can’t do anything about it… but I worry… what if he seizes when he’s on the bus between school and where I pick him up…

Amandya has gotten back to stable.  The absence seizures that were surrounding her gastroparesis treatment have gone away and she is back to being seizure free.  I worry.

Yesterday we were in Walgreens waiting for my Flu shot and my Hepatitis B shot.  While we were there, a woman about my age was there trying to get her first prescription of Keppra XR.  Turns out that Pennsylvania isn’t the only place there is some kind of Keppra shortage.  Go figure.  We got to talking and I think maybe I made her feel a little less like a freak.  I hope so.

She was just diagnosed.    She’s learning the vocabulary of her new normal and reaching out for support.  I hated to disillusion her… our town doesn’t have much in the way of epilepsy support.  It makes me sad.  Given she can’t drive, I didn’t really have the heart to tell her that if she wants support, she should probably suck it up and get someone to drive her 90 minutes south and hope like heck they have something she can sit in on there.

I want to help… I want desperately to help.  But I feel so much like I’m jousting at windmills and only the wind is on my side.

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.

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.

National Novel Writing Month

Okay… as I sit here stalling… no, not me… as I sit here contemplating life… yeah, that sounds better… yeah, yeah, let’s go with that… I realize that it is coming up on NaNoWriMo again (November) and this year I think I totally have a wonderful idea.

I was toying with writing a novel about my farmville town called Kellyville that I keep trying to write about… but I’ve decided that I’m going to use this month to pull together the book I have threatened to write and have yet to get my butt in gear on.

What is it you ask?

Well… it is based not entirely too loosely on the life of a teenager (and family thereof) with epilepsy.  I’m hoping to do it with the help of some wonderful people I’ve met on facebook and who are/have/will be going through the same things that we are and who are at different stages of their own journeys.

I feel like I’m being poked really hard in the back of the head because NaNoWriMo is in November and National Epilepsy Awareness Month and I have a shiny new PubIt account on bn.com where (if I can actually pull this all off) I can publish it in e-book format and donate the profits to further epilepsy awareness.

So here I go… I may regret this… I may wish I had poked myself in the eye with a pencil before I’m done… but…

A Day Like No Other will now be a book title as well… wish me luck and if you have anything you want to have included as a part of the book… please let me know.  I want this to be as far reaching and as informative as it can be… we need to have people understand.

 

Lulled into a False Sense of Security…

Day 2…

Sigh.

Well… I have to admit… I thought that we had gotten the mix “right” and that we had control over the seizures.  It had been 68 days.  Until Wednesday.  Until I got the phone call at work that Amandya is seizing.  Crap.

The tonic-clonic part was probably, from the description, the worst she’s had yet.  Usually it is thrashing and her jaws clench and unclench.  This time, it was curled into a ball and jaws clenched tightly. The complex partial seems to not have been AS severe, and the aftermath was less severe than normal, too.  She didn’t throw up, the migraine didn’t get quite as bad and the light sensitivity wasn’t as severe (although, she did ask to have a blanket put over the window) and she didn’t sleep more than half an hour or so after the seizure….

On the up side… Theresa, the nurse for the neurologist, was fabulous with me and we didn’t have to up the overall dose (just add in an extra on Wednesday to make sure if anything was weirdly up that we got extra meds in to stave it off).

Maybe it was a breakthrough seizure.  We might not actually have the setback that we assumed it was.

I was impressed with how she reacted to this one… she didn’t get angry… she didn’t freak out… she just… went back to reading.  My kid who doesn’t like to read has suddenly decided that she has found a book that she likes and she is devouring it.  She showed me last night that she was “only” on page 100 something…. and I thought back to the Pre-AP classes of last year and reminded her that she didn’t really read 100 pages and get anything out of it all year last year.

She has grown so much the last few months… it has been wonderful to watch.

She has made some hard decisions the last week or so.  Ones that she has spent an inordinate amount of time weighing and considering and thinking about… ones that she arrived at the conclusions all on her own.  I respect her decisions.  I respect what she has done and decided, not because the decisions were right or wrong, but because she weighed all of the pros and cons and made her own decisions.. not angry… not frustrated… just decisions.

Watching her… I don’t think it was actually worth developing epilepsy to grow, but the growth has done her a lot of good.

Now… to try to get back to 68 more days…

Latest Trip to the Neurologist

Well… it is that time again… time to go visit the neurologist…

I dreaded this trip… but it was better than I anticipated… and harder than I planned.

I got a piece of paper that declares that it is Partial Complex Seizures with Secondary Generalized Tonic Clonic epilepsy.

Dr and I had a heart to heart about calling in on the off hours.  We came to an understanding that, no matter who is on call, if I have to call the on call doctor, the following business day, I will call the office and either talk to Theresa (the nurse) or leave a message for her with everything that we discussed during the off hours calls.

We also increased the keppra to 1000 mg twice a day, coupled with a B6 pill at the same time to help mitigate the side effects… and maybe help decrease the chance of seizures.

And, we are 37 days out from the last seizure and no sign of the next breakthrough seizure.

Wow… okay… so… we are looking promising.  Deep breath…

I’m feeling way more relaxed right now than I have been about all of this in quite a while… I have no doubt that I will, at some time, get kicked back down to reality… but… right now I am feeling pretty good.

Previous Older Entries