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.

One, Two, Three, Four....

I know that I can add correctly. Especially when it comes to my medications because I have epilepsy which affects my brain I have taken measures to ensure that I carefully count out my medications so I don't make a mistake. I choked on my pride and bought a large (because there were so many big pills) weekly med container at my local drug store and two (ok I did cave and picked out the decorative ones) portable med cases. Every Sunday I kick everyone out of the home office and fill my weekly box then squint my eyes as I have my husband check it for any errors I have made. (so far none -knock on wood) So today when I went to take my meds I was short and I realized I had ignored my iphone alarm when it went off earlier this week trying to tell me that I was out of one med. I called my neighborhood pharmacy. Except, it seemed it wasn't my counting I should have been worried about.

"Your insurance company won't pay for a refill until May 18th because we gave you a 30day supply on April 18th", was what my friendly neighborhood drug store clerk was telling me but what I was hearing was 'YOU ARE SO SCREWED!!!' I was already short a pill and not feeling well. How was I going to survive ten days without my medication?! I knew I did not mess up, I would have had to been double up pills during a dosing time and this was Topomax which with every 25mg increase puts me to sleep as in one bite of a red apple sleep. I've been walking my kids to school and getting out in the community so there's no way I have double dipped in the lullaby meds. "Can you please hold?" Oh, it seems I am still on the phone, I got a bit lost in my panic. Because this moment triggered that deep fear of what will I do now that I am dependent on a medication to survive? My country works on a for profit insurance companies not for people. I may be a hard worker and I may have had jobs since I was twelve but now I am not working for food, clothes, shelter I am working to keep alive because the wrong seizure and I can die or my brain can be severely damaged instead of just scarred as it has been thus far. "Your insurance will refill the script on the 11th", she tells me. Ok. I am told breathing a little easier. Before I ask what should I do until then, she tells me that they will make up a duplicate label and I will be covered until the meds are refilled. She alludes that she is aware this is not my fault, apologizes and tells me that they will be ready immediately. Considering my biggest issue is getting to my neighborhood drug store when it could have been so much more, I will take it. However, this makes me more resolved to be the change for those who are standing in a panic wondering how are they going to get the meds they need and then the ride to go pick up those meds. I said it before, epilepsy picked the wrong woman. Today Epilepsy 0  Me 1  (I did have help and luck on my side and I intend to play it forward)

Side Affects May Include....

TrOuBlEMaKeR

Why the video above? Because everybody has their guilty pleasure mine is CW's Vampire Diaries a show I would have stopped watching if Klaus has not appeared in the form of Joseph Morgan (though with spin off Originals I am not sure what I will be watching come Fall 2013 but I digress) my point it is something to look forward to and always makes me happy, when I can't indulge like my friends, can't get in my car and go for a drive, loud music hurts my head, do I really need to continue? Didn't you press the play button?

 Go on. I'll wait....

Now, the medications that are suppose to help with the seizures and headaches....

Well, let's say your me and you don't read the side affects cause you know you might not want to take them if you know they might cause blah, blah, blah, fatigue, possible kidney stones, numbness in hands, blindness, possible death. Just read the ones on the outside of the bottle that say drink lots of water, don't operate heavy machinery and may make you drowsy. That last one was an understatement. I think I swallowed the first pill of my first med and might have made it to my bed in time for slumber to set in, the fairy tale about the girl with the spinning wheel well, she fell asleep slower. That was the Kepra. Correction Levetiracetam because my insurance isn't going to pay for a brand if there is a generic available. "It doesn't really matter" you are telling me but I am incredibly sensitive to medications. It could. But we won't know. For now I am sleeping, sleeping and for what seems like the first month of my initial diagnois I am so very sleepy. Let's forget the Rapunzel reference I seem to be more like one of the seven dwarfs, I'll let you guess which one. The dizziness is also an issue, I feel as though I am stuck on a never ending carisaol desperate to get off but terrified of the consequences of stopping my medications I stick it out. My husband has to carry the laundry basket up and down the stairs for me, this is the most embarrassing thing this far, my arms cannot handle the weight. It's just so tiring. I am told my my doctors office that this all the medications side affects that I am to take it easy and it will get better. Ok. But I really need to get back to my life. I seem to begin this as a mantra, 'back to my life' as though everything is just going to return to as it once was. (I have not realized yet it will never be quite the same)

This is from the Keppra XR website. (note not exactly the med I am on)

Keppra XR^® can cause serious side effects. Call your doctor right away if you get any of these symptoms:

• mood and behavior changes such as aggression, agitation, anger, anxiety, apathy, mood swings, depression, hostility, and irritability. A few people may get psychotic symptoms such as hallucinations (seeing or hearing things that are really not there), delusions (false or strange thoughts or beliefs) and unusual behavior.
• extreme sleepiness, tiredness, and weakness
• problems with muscle coordination (problems walking and moving)

Common side effects seen in people who take Keppra XR^® and other formulations of Keppra^® include:

• sleepiness
• weakness
• dizziness
• infection

These side effects could happen at any time but happen most often within the first four weeks of treatment.

I start waking up a bit, the tiredness almost leaving but the headaches still just won't go away and that aura feeling is still there at times. I meet with my neurologist who suggests adding a second pill after talking with me and running a in house EEG. Topamax or rather Topiramate because once again I will get the generic. My first warning that this pill was going to hit me like a monster truck should have been that I had to take 25mg for a week before increasing to another 25mg until I achieved 200mg. There was of course the Sleeping Beauty bit again. Though the pins and needles in my hands and feet are always annoying as hell when they occur which is often. This long winter it was wicked fun when the cold hit my hands and they went numb and burned with pain from the cold. My favorite was when I went to take a drink from my coke cola not 30minutes after taking the first pill and had to spit out the sip as it tasted what I imagine battery acid tastes like (anything carbonated has the similiar effect). I am still waiting for the benefit of the 20 of so pound weight loss that others have experienced from this drug. But I must tell you that I am stupid as stupid gets. My concentration and memory was shot before but this med just adds to an already existing issue which just SUCKS! Too bad I am not thin hot and blonde (kidding). The headaches while are at times not continuously intense are still frequent and annoying as hell. At this time I am not willing to increase this medication the side affects are not worth the risk. Below has been taken from the Topamax website (please note not the exact drug I am on)

Numbness and tingling 

This is known as paresthesia and is the most common side effect of TOPAMAX. People have described this as numbness or "pins and needles," most often in the arms or legs. More people had paresthesia during the early stage of treatment; however, it didn't stop most people from taking TOPAMAX.

Fatigue
Some people may feel tired while taking TOPAMAX. More people reported fatigue during the early stage of treatment.

Taste change
Some people on TOPAMAX may have taste changes where food or drink tastes differently. This has been reported with carbonated beverages, for example.

Weight loss 
Some people may have weight loss while taking TOPAMAX. This seems to be related to the dose of TOPAMAX taken.

Difficulty with concentration/attention and difficulty with memory
TOPAMAX may make it hard to concentrate. Some people may have memory recall issues. This reaction varies, but people have described it as "difficulty finding the right word" or "losing my train of thought."

So the big question is really does the side affects outweigh the damage that happens to my brain when I have a seizure? Currently the answer seems to be time will tell because now it's more a question of how long can I tolerate these side affects? Will they continue to get better as my body adjusts to having them in my system? Should I cave and increase the Topomax to help with the headaches? My fave question I keep asking myself is that what is going to happen now with Summer coming and that my body seems to fail to sweat? It's going to keep getting interesting that's one thing I can count on. 

I Have Places To Go....

Isolated and occasionally grouped, low to medium voltage, sharp waves, sharp and wave complexes, slow sharp waves and slow waves were seen independently over bi-temporal head regions. these wave forms are considered epileptiform in nature. This constellation of findings is consistent with abnormalities in bi-temporal head regions that are potentially epileptogenic in nature.

Wait! What? Hold on. Slow down. No! Stop. What is happening. What are you saying here? I don't understand. I'm scared. This isn't going to just go away is it? There is no take two of these and call me in the morning? I have to.... have to... B R E A T H E

I can't drive?! As in a car? But how can I work, I can't work if I can't drive! A major part of my job is transportation! I help people with disabilities live as independently as possible. WHAT DO YOU MEAN I AM A PERSON WITH A DISABILITY! Oh my glob. This isn't one of those moments when you feel like God just shook your snow globe but rather he dropped it and oops those things don't bounce, they shatter. WHAT DO I DO NOW?

Epilepsy. So Now What?!

Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke, and Alzheimer's disease. Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. Despite how common it is and major advances in diagnosis and treatment, epilepsy is among the least understood of major chronic medical conditions, even though one in three adults knows someone with the disorder.

Do you know the above person? If so then there is your one in three. Epilepsy however just messed with the wrong girl and you know what they say about payback...

I hate 3-D and strobe lights, certain patterns annoy me and sometimes if an object is sitting at an angle I have to move it cause it can make my head hurt. I learned this is called Photosensitivity and seizures. If i am luck (HA!) I just get a migraine not actually a seizure. I keep trying like when I went to Cranbrook with my sons class field trip forgetting that the plantarium can difficult on anyone but I wore my sunglasses and closed my eyes which helped a bit but my 9 year old son holding my hand was the best medicine that day. Legoland the boys wanted to watch a 4-D (where they actually make it rain or use fog machines in the theatre) 20 minute Lego Clutch Powers movie and after telling the audience that you cannot exit they announce that if you have problems with flashing lights or laser beams, loud noises and strobe effects you shouldn't watch the film (um hello? you just made it pitch black in the auditorium and asked us for our safety to not get up from our seats and move!) My husband texts my phone "someone needs a refresher on the persons with disabilities act" then of course the man behind me kicks my seat cause my phone lit up. Yea pal it could get much more interesting if my brain freaks out during Clutch Powers race to the finish line on planet Mars. It didn't but again I missed a lot with my eyes closed, head down and my seven year old sons hand in mine. While this is annoying this is child's play compared to what comes next....

Simple Partial Seizures
"People who have simple partial seizures do not lose consciousness. However, movement, emotions, sensations and feelings can be affected.

However, some people, although fully aware of what's going on, find they can't speak or move until the seizure is over. They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure. And they can usually remember exactly what happened to them while it was going on. However, simple partial seizures can affect movement, emotion, sensations and feelings in unusual and sometimes even frightening ways.

Some simple partial seizures start out with shaking of a hand or foot which then spreads to involve an arm or a leg or even one whole side of the body.

Emotions: A sudden feeling of fear or a sense that something terrible is about to happen may be caused by a simple partial seizure in the part of the brain which controls those emotions.

In rare cases, partial seizures can produce feelings of anger and rage, or even sudden joy and happiness.

Sensations: All five senses—touch, hearing, taste, smell and sight—are controlled by various areas of the brain. Remember that an episodic feeling of fear or other feelings is usually not caused by a seizure.

Simple partial seizures in these areas can produce odd sensations such as a sense of a breeze on the skin; unusual hissing, buzzing or ringing sounds; voices that are not really there; unpleasant tastes; strange smells (also usually unpleasant); and, perhaps most upsetting of all, distortions in the way things look.

For example, a room may suddenly seem narrower or wider than it really is. Objects may seem to move closer or get farther away. Part of the body may appear to change in size or shape.

If the area of the brain involved with memory is affected, there may be disturbing visions of people and places from the past.

Sudden nausea or an odd, rising feeling in the stomach is quite common. Stomach pain also may, in some cases, be caused by simple partial seizures.

Episodes of sudden sweating, flushing, becoming pale or having the sensation of goosebumps are also possible.

Some people even report having out of body experiences during this type of seizure. Time may seem distorted as well.

In many ways, our usual, comfortable sense of familiar things and places may be disrupted by a simple partial seizure.

Well-known places may suddenly look unfamiliar. On the other hand, new places and events may seem familiar or as if they've happened before, a feeling called déjà vu.

Simple partial seizures can also produce sudden, uncontrolled bursts of laughter or crying."

From Epilepsyfoundation.org

Now. I am not trying to freak you out. I am the same person I have always been. According to my neurologist I have likely had this since childhood and it was never discovered. Though my wonderful mother took me to several doctors and keep yelling "Hello! Something is wrong she is staring there is a biological history here."  Another billionth point for my mom and losing point for idiot doctors I saw in my youth. Moving on... Well I couldn't move on right away, we had to wait  cause I had a seizure. Now since I never do things the easy way I also have these type of seizures as well....

Complex Partial Seizures

"First Aid 

• Do not restrain the person.
• Remove dangerous objects from the person's path.
• Calmly direct the person to sit down and guide him or her from dangerous situations. Use force only in an emergency to protect the person from immediate harm, such as walking in front of an oncoming car.
• Observe, but do not approach, a person who appears angry or combative.
• Remain with the person until he or she is fully alert.

"During a complex partial seizure, a person cannot interact normally with other people."

Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.

During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.

Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

Although complex partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called "temporal lobe epilepsy."

"Psychomotor epilepsy" is another term doctors may use to describe complex partial seizures.

Typically, a complex partial seizure starts with a blank stare and loss of contact with surroundings.

This is often followed by chewing movements with the mouth, picking at or fumbling with clothing, mumbling and performing simple, unorganized movements over and over again.

Sometimes people wander around during complex partial seizures. For example, a person might leave a room, go downstairs and out into the street, completely unaware of what he or she was doing.


Actions and movements are typically unorganized, confused and unfocused during a complex partial seizure.

However, if a complex partial seizure suddenly begins while someone is in the middle of a repetitive action—like dealing cards or stirring a cup of coffee—he or she may stare for a moment then continue with the action during the seizure, but in a mechanical, unorganized kind of way."

from epilepsyfoundation.org

So far I tend to do the last one, mechanical actions in unorganized way. Or I have been known to lose consciousness hence my no longer driving for fear i would hurt someone else or my kids. I seem to fall down a lot though which I like more than walking into traffic or playing with my clothes (I keep worrying about that dream you know the one where you are walking naked down the street?) 

 Now the fun part and the reason I was quiet for so long, we as a society have this need to always show our best face like we must impress all the time. Look at me! How perfect my life is and I tend to find my best moments in life are when the messy times occur. However, right now life feels like someone has taken my snow globe and violently shaken it and each time the snow starts to settle a bit they shake it again. But for now thanks to family and good friends I am able to keep my feet on the ground and when I fall I can get back up and dust off the snow. Ready for the kick in the pants? The part where I get to live with this for the rest of my life. It forever changes my life and everyone in my life? I has affected me throughout my life without my knowing it since childhood but once I learned about it so many puzzle pieces clicked into place. I found the missing piece but now it had time to do so much damage that catching up let alone getting ahead of epilepsy is not going to be easy. One light goes awry they all do and they have had a thirty year head start. But I up for a challenge and I have back up. "I don't think I have met a patient with quite the humorous approach to this situation before", my new primary care physician. What? Am I suppose to sitting in the corner and cry? Believe me I will be fighting just not with my fists. 

Public Understanding

"Every day, people living with this type of epilepsy go to work, take care of their children, take part in sports, ride buses, cross busy streets, go on escalators, wait for trains and—perhaps most difficult of all—risk having a seizure in front of a public that too often does not understand.

Dealing with the reactions of others may be the biggest challenge of all for people with complex partial seizures. That's because many people find it hard to believe or accept that behavior which looks deliberate may not be.

Lack of public understanding has led to people with complex partial seizures to be unfairly arrested as drunk or disorderly, accused by others of unlawful activity, indecent exposure or drug abuse—all because of actions produced by seizures.

Such actions may even be misdiagnosed as symptoms of mental illness, leading to inappropriate treatment and, in some cases, commitment to an institution.

The Epilepsy Foundation and its network of affiliates are committed to making the public more aware of this type of epilepsy so that painful misunderstandings can be avoided.
Not uncommonly, simple partial or complex partial may spread to involve the entrie brain will result in a later phase with generalized convulsions this kind of seizure seizure is called partial with secondary generalization."

taken from epilepsyfoundation.org

There's a reason that section is highlighted yellow but that's for another blog entry. 

I always wanted to change the world. For over twenty years I have helped others live independently and now I am on the other side of the fence. I think once I have the seizures a bit more stable I will be able to get back to be the change I want to see in the world. 

I just didn't realize what that change was until now....

Holding On, Letting Go...

I realize that I never fully understood my epilepsy I didn't want to I just wanted to keep going, nothing had to change. Right? Just take the meds and keep going doing my thing my life was finally falling into place financial security was right there, I wasn't planning European family vacations but if something broke we could fix it without trouble. I didn't need to life large just to live without panicking about getting into debit with creditors. But epilepsy threatened all of that. I had a job without health insurance, I relied on my husbands which had a high deductable and co-pays. I had never taken medications and now relied on two to get through my day and two more as needed for my headaches/migraines. Stress is not good for Epilepsy I was told time and time again but the more I realized about how my life was changing the more stressed I became.
 B R E A T H E
I kept working until one day I was standing picking up my boys from school and the next I was being helped up from these nice two ladies who told me I slipped on some ice. I couldn't recall where I was, what I was doing, that I was even outside or with my boys until I hear my younger son speak up "don't help mom up she has epilepsy you have to wait til her brain reboots!" The first thing that came clear through all the fog was and  what my young son would call the F-bomb. Everything was going to change now....