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. 

What if your the mom and you have epilepsy?

Today I am going to take my almost 10 year old son to see Superman: Man Of Steel. The fact that the film is rated PG-13 is the least of my problems for my child is mature enough to handle the content of this movie. 

For my son is my hero, he braves the unknown. He will walk into the movie theater today with me today, holding my arm to keep me balanced because my vertigo is back and I tend to wobble at times but that isn't going to stop us. He will sacrifice seeing the film in IMAX or 3-D not because it is not available or not affordable but because it will make 'mommy's head hurt'. We will take the elevator even though it is less "fun". If I mess up our popcorn order because of brain damage 30 years of untreated epileptic seizures has caused he will catch it or if not. He will not complain. My son is not perfect, just as I am not perfect but together we are enjoying a day at the movies. We just do it as he calls it "our way". This also includes, his re-education on what to do if mommy has a seizure. Unfortunately the most difficult part of that is handling those who are not aware of what epilepsy is and do not know as much as a almost 10 year old boy. Hopefully IN TIME WITH EPILEPSY AWARENESS WE CAN HELP THEM ACCOMPLISH WONDERS .... and change the future of everyone with epilepsy. 

My George Clinton Funk Impersonation

72 hour mobile EEG test. I have had two done, because lets be serious I make this look good! ; )
Joking aside, the first time I had a 72 hour mobile EEG test I was alone having sent my husband and young son up North together to collect my older son from his week long stay at his grandparents. I figured spending time alone would be good especially since I didn't want my boys to worry so after they left I went in to get hooked up. The young girl attached several electrodes to my head after carefully measuring out where to place them with a tape measure. She laughed at my wise cracks that a threw at her when I was overcome by nerves while she plugged me in and connected me to her laptop for monitoring. Carefully wrapping my hair up in the gauze and then taping everything up she sent me on my way with my extra set of batteries for the box that now rested on my hip. My father drove me home and then went grocery shopping for me, bringing home some extra treats that were not on my list but very welcome. Unfortunately, I wasn't alone when I returned home as my neighbors were having their driveway completely redone. I had to venture out fashionable head dressing and all to warn the crew that I had a sprinkler system so please be careful when they were cutting out the old driveway. Yep, I am that kind of kooky who can walk out looking like a extra in a horror film (no make-up wearing a big tank dress, head wrapped in white tape and trailing wires) and have a discussion with a group of shirtless muscled construction men without a hint of nerves. The guys were quite nice and with the exception of one didn't stare, much. The time went by quickly and then it was time to turn on the sprinklers before the crew left next door. Whoosh! I had a new fountain feature in my front yard and when I went to quickly turn around I swayed and one of the crew caught me while the other frantically asked for permission to access my house running inside to shut off the water. Meanwhile the guy holding me had set me onto the chair on my front porch and called his boss explaining that it seems my sprinkler system had sprouted a major leak during construction. After he hung up the other guy and he began to mumble to each other, finally I snapped at them both "Oh just ask me already!" So they did. I told them I was being tested to find out more about what type of epilepsy I had. One guy had never heard of epilepsy and the other had only thought their was the kind where you fell on the floor and shook. At this time I told them I didn't know much more than they did but that light, sound and sometimes even smells hurt my head. That I had not to my knowledge shook when I had fallen to the floor but I did fall a lot and that I tend to 'blank' out quite frequently. After our chat the guys left promising to return tomorrow with their boss I went inside and realized my tape was sitting like a muffin top on my head, as always I stay classy. I tried to pat the tape helmet down but that didn't work so I gently removed it and left the gauze on for the last evening. My head was so much cooler, had not realized how hot it was under all that tape or how much hot air my head produced (see I have a wicked humor I can unleash for defense). The next morning I woke and took the steps, unplug all electrodes from the box then go into shower and let head soak in warm water. Then supposedly I was to gather the colorful wires and pull they would all just come off my head. Umm.... not how that happened. It went more like (insert a lot colorful obsentities here) I aborted the pull and they will just come off rather quickly. (I'm no low pain tolerant girl either, they were not budging no matter how much I tugged) So, I scrubbed a bit around the edges and then a few started dropping into the tub at my feet. After a bit longer I was able to pull the last one free from my head and begin trying to remove the paste that held them in place which was a pain in the ass! Welcome any advice for that as I still cannot figure out how to do that effectively. Toweled off my head and realized I had red marks where the electrodes where placed and itched like crazy. Of course I would be allergic to the paste, sigh. A touch of creme on the red marks, a hit of benedryl and I was ready when the doorbell rang because I still had a broken sprinkler system.

The test results are in the earlier blog, it says I has activity that is almost constant and high spikes. According to my second EEG, I am lucky the meds are doing their job but the side affects are not making life that much more bearable. It's a learning curve. I still have the effects of 30 years untreated seizures, the migraines and the vertigo to contend with.