EMU is just 3 letters

I'm trying to pack a bag of 'things to do'

Instead I am delaying the inevitable and watching this video instead.

 "want to be happy Doc? Change your picture."

Took half my medications this am and then half tonight. None tomorrow when I drop my boys off to school then head to the EMU testing facility. I am not nervous I am terrified of what they will find, in the end I hope that my brain lights it up and they collect enough data not just to help me but others. That if I do have the type of epilepsy first thought they can use this information to conduct research for the increasing number of people being diagnosed with neurological issues. Thirty years later it's past go time for testing that's more involved than a simple EEG. 

Now it's time to put on my big girl panties and pack a bag with a change of clothes (seriously who has a shirt with buttons in front? And if you do like you want to take it to the EMU and get that paste, glue or whatever gunk on it? It's hospital garb for me, I think I can rock it!) I hope there is wifi cause no I am not going to concentrate on the tests that's for the Neurological team to handle. Me I plan on chillin' and seizing. 

Now, which DVD's and books do I pack for when I am alert enough to be bored?

Oh did I mention that today's my birthday? Yep Happy Birthday to me, this year's present is a gift of chance to change my picture for a better future a healthier life for me and with luck helpful to neurological research.

One Life My Way

Basically I was told I had epilepsy given some medications and then sent on my way not understanding what types of seizures I had, the side effects of my medications I had been given and sent on my way by a friendly staff which left me with a hefty medical bill and a lot of unanswered questions. I thought my life wouldn't change, then when I realized it would I sort of let it for the 6months the state took my drivers license away but in the end I went back to my life just differently. My head hurt all the time, I had that pins and needles feeling in my hands and feet when it was cold, I could no longer tolerate the same foods, my memory was bad before and just got worse, I forgot so much like the date or where I put my keys and my temper was short when I wasn't acting like a walking zombie. Finally, I spoke up but all that was attempted was small changes to my dosage which only made the issue worse so everything was left alone while my headaches increase in frequency and pain. My memories started to fade away, I was notified of my high school reunion and realized that unless I had been interacting with my former classmates on social media I didn't not recognize their names nor did it help much to dig up my old yearbook. Something had to be done and of course my always hero Mom had an answer already. She found a new neurologist through a family friend who I had spent many hours watching their kids. One thing I do remember is he was somehow involved in one of Rachel Leigh Cook's films (see video) cause he asked me to watch it after I put his kids to bed one night and fill out some paper about my opinion on it. My new neurologist says he's up for the challenge

I am thankful for those who made this happen so the first thing he did was toss the topamax because if I have headaches and migraines it was pointless to take a medication like that as it obviously wasn't helping. This is easier said than done, as I have to take 25mg out every 7 days (that is how toxic this medication is not to mention it is interacting with how my brain functions) as the dose gets lower I am in so much more pain (though I do have medication for this) and lights, rapid movement and even placement of objects can cause instant pain or trigger seizure if I am not really careful. For example, I watched Captain America: The Winter Solider with higher level of topamax in my system and then watched with less topamax and the second viewing left me with a headache and several times I covered my eyes during fight scenes. May sound weird but it's one of the things I had been complaining to my primary care physician for years before my diagnois that flashing lights were bothering me. Anyway, I am supposed to be having an EMU done in a few weeks so he can get a better visual on what's happening in my wacked out brain. In the meantime, at this office nobody is really friendly and I am less zombie but i am not sure that just due to the constant pain from headaches (no I won't keep popping pain meds like they are vitamins not an option) So, is this really the life i lead now? Zombie Girl or Pain Prison? Hoping I am biding my time until dr gets a better view and has a third option course that will change things again won't it? At this point productive member of society works for me, when you can't do basic math or recall simple facts this option is looking bleak because soon I can't blame the side affects of topamax.

The Bigger Picture

You traded your ship for me?

The noise, even with the earplugs it's an instant headache and with my eyes covered I am still aware that I am trapped with my head literally in a cage wrapped in towels so I cannot move an inch. My body is encased in the MRI chamber up to my waist and my arm with the open IV line awaits the contrast dye. Breathe, do not panic. In order to not mess up the test I must hold still and not squeeze the panic button even when the tech announces in a voice I can hardly hear that the brain slice scan is beginning and oh the whole chamber seems to shake then emits a high pitched cry that pulls on my already pained head. Slowly it continues as it goes from one end of my head to the other in excrusating slowness. One thought pops in my head, "you traded your ship for me?" Slow and steady breathing hold still because this isn't just for you. Neurologists suspect thirty years of untreated epilepsy, this more advanced MRI will give not just me a better chance but I am being treated at a learning/teaching/research hospital where they plan to study my brain to see what happens when epilepsy is untreated. Hold still and don't panic for the increasing number of kids being diagnosed with seizures. "you traded your ship for me?" This former orphan has always been willing to anything for others, just to prove she wasn't a lost girl. I know that if this scan could help in any way no matter how loud, tight, dark and is it actually moving? I can hold on til the end for the bigger picture. 

   

After the MRI I was sent to neuro for an EEG but that was a scheduling error as I will be returning next month for a extended stay. While I was waiting my friends stacked my FB timeline with videos to watch and reminded me that even when I am stuck places feeling isolated I am not alone. Headed down to do labs I was happy to see Ken at check in (not kidding it could've been a life sized version of Barbie's man) who was friendly and a bit horrified on my behalf over the number of lab orders I handed him. I was a bit shocked and relieved when he handed me back a lab requesting spinal fluid (yea that's not happening until absolutely needed no data mining my spine) stating they don't do that and likely the lab was just a mistake (that RA is always messing with me, like that time she suggested I didn't realize I was in the epilepsy department - eye roll. I do try to get along with everyone but her compassion and listening to patients really needs vast improvements especially when general staff also notice) The nice lab tech asked if I was ready, I smiled and replied "I have a choice?" She laughed and perfectly drew 8 large vials of my blood. I drank my apple juice and was on my way. That was Friday, now we just wait. Experience tells me that if I don't hear from them that's a good thing. In the meantime, I continue to slowly decrease my topamax, work, get ready for my next test and enjoy life. 

My Head Hurts

ALL THE TIME.

So I was given medication for that, then came side affects which were ridiculous. Though I took the medications because well, I had epilepsy right and migraines so then I take medications now and I am a zombie but hey this is my life now. Right? Except nope. This doesn't have to be the way I live the rest of my life because there are other options I just need to take that step out and go STOP! This isn't working for me, I still have headaches and in fact feel worse than I did when you said "You have epilepsy"  Which in fact is the first thing the neurologist that I was sent in to see asked me "do you feel better than you did before you started taking these medications?" NO. So now, I am weaning my way s l o w l y off topamax (happy to say good bye to that toxic medication) about halfway to zero now. The headaches have increased but that was to be expected. I have been given a script for a heavy dose of a OTC that I can take the minute I feel a migraine starting, sometimes they take the edge off for a while. In the meantime, the tests have been ordered and I have been working as much as possible as I will likely max my deductable within a months time, again this year. My insurance company and I have formed a friendship, we are open and honest with each other I want to get better and stop seeing all these doctors and they want to stop having to pay for all these treatments so it's a win win. Now, to just end the headaches cause living alone in the dark is not really an option that I am going to live with.

Does My Son Have Epilepsy?

The teacher noticed my son staring a lot in class, for most parents that might not be a big deal in my family with my biological mother's lifelong history with epilepsy and now mine a trip to the pediatric neurologist was immediately in order.

Did my son genetically inherit epilepsy from me?

*Most children of people with epilepsy do not develop seizures or epilepsy. However, since genes are passed down through families, it is possible. Here are a few general points to remember.

• Less than 2 people out of every 100 develop epilepsy at some point during their lifetime.
• The risk for children whose father has epilepsy is only slightly higher.
• If the mother has epilepsy and the father does not, the risk is still less than 5 in 100.
• If both parents have epilepsy, the risk is a bit higher. Most children will not inherit epilepsy from a parent, but the chance of inheriting some types of epilepsy is higher

*http://www.epilepsy.com/learn/epilepsy-101/epilepsy-inherited  Epilepsy Foundation website

My son is almost 9 years old. He passed the first EEG but continued to exhibit staring spells, a facial tic and then headaches started, the ones that needed darkness, sleep and sometimes made him feel like vomiting began. So an EMU was ordered. Bragging mom moment because my 8 year old didn't flinch once while he was hooked up to the electrodes and 'plugged in' as he called it. The pediatric unit of the hospital had him under observation in their section so he had access to an xbox, Wii, numerous dvd's that could play on the flat screen in his private room, not to mention the two lego sets, planet blanket, superhero pillow case and other treats that were in the room awaiting his arrival. His favorite thing in the room though was the video monitoring camera that followed him on the rare occasion he left the bed to use the bathroom. He had to stay in bed so he missed watching Disney's Frozen in the Children's Miracle Network Garden with the other children but was given a stuffed glow pet (which he clung to both nights he was in the hospital, thank you to the non-profit company who donated the item) popcorn and candy. Plus we were able to watch the film in his room! My son spent his time doing school work, playing video games, doing art projects, reading and unfortunately keeping a few headaches under control. He had a I will/will not eat that tolerance with the food that was only a phone call away and in the end he did well, my mommy bragging moment came from his understanding that other kids in the section of the hospital he was in were actually sick while he was just being 'observed'. 

The answer though is NO, my son does not have epilepsy. I am a lucky mom, willing to battle my own purple war and hopefully it will not reach my kids other than to teach them compassion, how to respond and to raise awareness. All for one and one for all!

When A, B, C can't get it together

If I take all my anti-seizure and collaborative medications I am a walking breathing zombie but according to my neurologist who is wonderfully available, friendly and let's me pay my deductable in monthly non interest payments my seizures are under control. However, I forget things; how to do basic math (as in how much change should I get back from the Starbucks barista, so volunteering at a school function when cash is involved is out) spelling (this one paragraph has many red squiggles under words and those are my substitutes because I could'nt think of the one i wanted to use), my brain thinks one word and my mouth says another, more often than I'd like (at times they are profane in nature) lets not forget the major issue of my short fuse which is an issue for even me who daily struggles to make sure my frustration to battle the comprehension I can't achieve doesn't wage war with my hostility that suddenly fierce on the rare occassion i am a waking zombie. Not that I am ever intentionally mean or NEVER violent. I am just often reminded of my elderly grandmother who snapped at the beginning of her alhermiers (yea that word wasn't going to be spelled right) Now, i do know there is a spell check feature but i forgot how to use it, that is the biggest complaint but that one came before the meds so i can't really blame my zombie pills on the fact you are reading this with all my grammatical errors still within my blog. I am tired, like a zombie and if i wait til i am not so you will never read it. My point will not be made and this entry has been sitting on here in draft form for months now. I already took the next step to rid myself of being cast in the next season of the Walking Dead (though the paycheck would've been nice but i suck at acting and hate attention of any camera)

With the help of a neighbor whose kids i babysat more weekends and Summer days than not I will be seeing one of the top Neurologists in the state and country. His first action was to take me off Topomax and order a lot of tests. Several of which I will freely admit to being scared shitless to do but i will for me, my family and anyone else with epilepsy for any test i take with him goes towards research. As the above video indicates. It's game on, i am taking charge of my epilepsy and my treatment.

"Being around you has been so stressful for me"

                                              (warning: don't press play with kids present)

This was the one media reference that hit straight to the heart of my point (although it references cancer) that people around me seem to reflect most often to how THEY are feeling and how my not feeling well affects THEM. Perhaps I am not being fair at this moment as I vent but this isn't something that will ever go away. I am not really going to get BETTER. My life has just changed, hell my status as a citizen in this country has changed. I am now a person with a DISABILITY. Sure, doctors believe that I have been living with this for likely 30 years untreated until my brain was so affected I could no longer ignore the signs. I followed all the rules of this 'American Dream' I worked hard in school, listened to my parents, didn't do drugs, went to college, worked hard at a starter job with benefits and when it came time to have kids I wound up taking time off to care for them and my grandmother who was suffering from alzheimers. Now, the girl who babysat every kid in the neighborhood, carried a camera with her sharing her view of the world with everyone without asking for anything in return and gave up her dream job to take care of her grandma because no one else was able to 'handle' her at the time when she wanted to stay in her home is on the other side of this dynamic now and as much as she attempts to work with those around her if she hears how hard her condition is on THEM one more time she may shout "ARE YOU KIDDING ME?"  And before everyone gets offended those lovely supports know who they are and obviously this does not apply to you. For those who battle a disability every day and get hit with some of the most dumb comments ever I know you can relate to the whole, "but don't you realize how this affects me?!"  Oh I am so sorry I didn't realize you were the one lying the the fetal position under the pile of blankets in the middle of the day in the dark cause you had another migraine after attending your sons soccer game, sorry I'll just jump up and help you out. I get it's a problem but give me a moment it will pass and we can move on. I am not in the middle of the family room screaming in pain (cause I could be it hurts so much) I am dealing while you are living and hopefully my kids are doing kid stuff like homework or playing legos and then we can all go back to life un-interrupted by health issues. I hate it more than you do TRUST ME.