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.

Red Tape

What if someone or someones knew that you as a newborn were having seizures but hid this fact because for whatever reason perhaps they were worried about the adoption going through, or were bribed, maybe they figured someone else would eventually realize why you screamed so much as a baby? My parents were told I was given a medication because I cried a lot and the group foster home I was in had too many other kids to care for to worry about a fussy baby so they drugged me. What they used, was a anti-seizure medication for newborns, which would not be realized until decades later. When I call for my records that I paid for when in 1990's the Federal Government declared that all closed adoptions be allowed for a fee of course be allowed to contract a court appointed confidential intermediary who would obtain updated medical records (after science and open adoption advocates fought that those with little to no knowledge of their medical history would be at a greater risk to health issues like cancer, heart disease and the like) I am informed that my records have been stolen by my appointed intermediary who walked off the job with them. After my initial your KIDDING right?! I realize that this is exactly what those with open adoptions have access to, medical information. With every seizure a condition I inherited from my biological mother I take one step in the wrong direction as doctors guess when there is this woman who spent the majority of her life in a group home and gave me up for adoption has the cheat sheet of what's going on with my brain but there is a locked door in my way! The gatekeepers are the very people who employed people who drugged a newborn to shut her up, lied on adoption papers, stole confidential documents and with just these acts that I know about, have violated every commitment they promise.
For over thirty years my brain has suffered damage to the temperol and frontal lobes due to untreated seizures and while neurologists work on mastering a correct treatment to beat the various seizures,including PSE I have while working on the migraines and misophonia I will work on unlocking this closed door not just for myself but for others because if someone supposedly cared enough to bring me into this world shouldn't they care enough to keep me in it?

I Can Feel Again....

Yesterday I attended the Epilepsy and Wellness Conference put together by the Epilepsy Foundation of Michigan. It was the first time I was in a room with other people with Epilepsy where I walked into a room to advocate for myself. (I am a social worker who has spent her life working with persons with disabilities so while I have advocated  for others including those with epilepsy I have never do so for myself especially though I have had epilepsy for likely my whole life I have only recently been diagnosed) I felt selfish though I knew I would help others but at the same time I felt ALIVE and for the first time in so long I could FEEL again.  

My entire life, the puzzle pieces started snapping into place. Does this mean that life is suddenly going to get easier? Hardly. This however, strengthens my resolve to take all those skills I used to advocate for others and this time I am going to fight not only for me but for all of us with Epilepsy. So you may be hearing from me as I start building my 'bridge' and I hope we can all work together to change the future.

One day soon, I will tell you my story and I hope you will understand my drive, that I do this not just for me but for all of us. 

Memories...

Please press play then begin reading......

As I read articles about how important it is to stop seizures in children in order to prevent cognitive issues later, I think about the estimated thirty years of untreated seizures I have endured and think maybe this is contributing to my slowly degrading though process. It wasn't that I didn't have EKG's done or that my mother didn't take me to doctors and state something is wrong please look deeper and seek out what is going on! One of the few biological histories noted is that my biological mother had epilepsy. No one found anything, or rather anything SIGNIFICANT.

This is the game my insurance company pays for me to play, pretty easy yes? NO. At least not at first, see the more upset and anxious I get about not understanding it the more my brain goes as my son calls it 'offline' and then I can't solve the puzzle. However, by the end of the allowed (and my insurance only gave me 12 sessions so had better gotten my game on) time limit I was able to solve a puzzle with 5 rows across/down.

My point? Sometimes with great patience and a lot of choking on ones pride (sitting with a girl younger than you who knows the answer while you struggle tests ones limits) you can reteach your brain. Course I still have to practice. Some days I do better than others of course and when I get upset I fail. 

I took a neuropsych evaluation and the test result showed that I was so poorly functioning at math the licensed DR wrote on the evaluation that I wasn't 'trying' ANYONE who has ever spent more than an HOUR with me knows I give everything my all. The test took 8 hours. The DR who wrote up the eval met with me for 20 minutes. I was unable to do basic math or recall numbers/words given to me after a period of time. It was embarrassing yes, but never did I not try to answer the questions. I had already played the game above which is how I did well on the puzzle games that i was tested on. When I contacted the DR after reading her write up she told me that I should go talk to someone about my anxiety issues because it was obvious that my epilepsy and my medication for it was not affecting my cognitive abilities at all. I informed her that no DR especially a recent grad cannot make that assessment in 20mins. My other point that I didn't make cause I felt she would latch onto it as her justification is the meds I take may cause anxiety but that doesn't mean I can't still put forth my best efforts. That is how I do things, did you not see that game I played (photo above) in the room with the younger girl, I learned two things: how to bear down on my pride to succeed and to overcome my anxiety in order to obtain the answer if possible. 

Which brings me to my other point those doctors, who couldn't look past the surface they still practice today. In the end it is about the time you invest in something is what you are going to get out of it. Only a very select few people in the world are handed a silver spoon in life the rest of us get to work so buckle up for the ride it's usually bumpy but if we can embrace it all then we can survive, thrive and in our darkest hour find our light.