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.

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.