Back in the hospital Aug 16

Given the past 24 hrs I am so glad that I am back on an inpatient status again at Cedar.

I had a seizure yesterday afternoon about 3:00. another hit hard maybe 1030. The only blessing of the drug from hell Diastat- which we used our second and last one. Maybe it would work better than the injections. It proved my previous theory - suppositories make terrible medication during a tonic clonic seizure. I will spare the details.

The next morning brought another of the same and the call to the doctor. Of course even the call was a challenge. Verizon Wireless had cutoff signal to town. We went to my grandmothers who thankfully still has a landline and at&t tracphone and we got through to the doctor who said come now and go straight to the ER.

I was put right into the ER with just minimal processing. I had recently had a seizure and had no speech. Everyone was so kind.

Unfortunately they were beyond full and I was stuck on a gurney in the hall even while suffered yet a fourth seizure in front of all to witness. Quite the show. Luckily IV ativan has about 10 minutes to work. I still lost language for quite a while leaving me very frustrated trying to share my intense pain. Finally as I was preparing to be admitted my doctor noticed and gave me a WOWbdosebof duiladuid.

Status Saturday 25 Aug

This will be very short and honesr. Worst day yet this stay. I was roughly scheduled to leave today yet stay nearby. I was singing toes in the water ass in the sand to myself enjoying "free" coffee (decF, nonfat splenda) with my mom who had spent a very long night with a very worked up yours truly. How would I be released if I can't walk 20 feet without a seizure. Weird aura, weird start to seizure not my norm along with computer/pharmacy issues I ended up with a visit by rapid response team (Detail sparred). 6 mg of ativan and no clue on morphine - God is good. Brett and Sean were here and I was starving. Long much needed cuddle with my tiny 5'8" + baby and i was better.

I ended as of 11:15 pm with 3 seizures. 50, 25 and 20 minutes. I know they want me gone soon and I wonder how it will work. God, family and friends will guide me daily.

I am falling asleep - Goodnight all and thank you.

Day 5 Hospital 2012

For those that may not be aware my news temporary address is Cedar Sinai room 4109. Like said its been 5 days, 5 IVs (apparently my body is rejecting them) which considering IV is to stop seizure or stop pain I am annoyed. The nurses are discussing starting a Picc line to result in fewer problems.

My seizure meds are still being fiddled with. I also have noticed that pain is a trigger which we are addressing unfortunately for me that is via morphine which is a very temporary solution.

I am going to apologize here bc writing this isn't easy. I feel it is very important so please understand my errors and mistakes.

I have a new internist- Dr Wool. His intelligence,  excitement and intrigue for what he does shocks me each day.  He has called in a team of rheumatologists that are certain I have an autoimmune disorder. No this isn't new. We have heard and played it before. One thought is it it flares and tests will show better now than during a non-flare. So we did a lumbar puncture twice. I have officially experienced the most painful experience of my life. Part of the results are back and all we have learned is I failed to be vaccinated against Hep B (or it wore out) lots still pending. I would have happily gotten the damn vaccine vs the test for future reference. I have never been one to scream during intense pain - quite opposite. Very quiet cry am internalize. Its been I think two days and I am humiliated at my level of volume, pain and telling the doctor to quit midway. Instead he ignored my rants and did punctured again. I never doubted the spine held all nerve endings- you wouldn't believe the place it incited level 20 on a 10 being the highest pain level possible. Evil!

Last night I had an MRA to check the varying vessels in my neck and brain - with the help of contrast. After they were so generous to share the images. What am amazing view of my own body.

I am starting to experience strong pain so for now that's good bye. Please feel free to comment here, facebook or text. I miss he so much but not soon.

I am dedicating this to Heather Edwards. This past week she was lost after giving birth. I wish had told her that her strength and kindness during a very difficult time kept me at work smiling. It was the beginning of this illness - I had knives coming from all directions. I consider myself blessed. I know being a mother was her dream. I will never understand. I know God is with her husband, baby, family and friends. Please pray for them.

Admitted at Cedars

After my seizures progressively worsening - I was admitted to Cedars Sinai. Yet again MRI and an EEG as well as blood tests. I had the requested CT Scan done at RRH this past week. As if now Ibhsbe nkbg? I am averaging 4-5 seizures each day for unknown reasons. As of now, Friday morning, nothing  has been done to stop or reduce them. I am being given Ativan IVP along with soma and morphine for pain.
Just going to keep it this short. With meds and confusion its so hard to write. I am constantly correcting and fixing myself. I realize that it isn't just meds- my brain is just plain struggling.
I have great nurses. Day nurses are enjoyable and for the most part enjoyable. One today was scared of my seizures. They are just different. The Stafford  the past two nights I have begged to stay - i.e. cancel flights everything. She offered to hide me in her suitcase. That would be Jennifer the RN from Canada. She is so much fun its just unreal. She is strong and understanding during  seizures. The Clinical Partner Adele is rough around the edges and a former poster worker. I couldn't be more blessed by both the care I am getting but the love and personality- and laughter they bring.
Ok my brain is hurting not good. Off I go for no. i don't have any news to report. Hugs.

Freak, Weirdo, Monster Epileptic- What's Your Label

The power of a word, the power of an illness is something few in our society understand first hand.
As I live each day my goal and very strong feeling is I AM NOT EMBARRASSED. If I was embarrassed I would go NO WHERE except doctor appointments. I go to BBQs, dinner, shopping, birthday parties, grocery shopping, pedicure with a friend, kids events and so much more. I only miss if I am at a doctor appointment OR I am literally incoherent after an event. Give me 40-60 minutes and I am there! Sometimes I maybe feel unsure or uncomfortable - what if I have a seizure here. This maybe a year old but there are events where it still is new. I take a minute maybe discuss it with someone with me and then just move on.
Everyone doesn't feel like I do. Some people are absolutely amazing and don't seem to be phased a bit. There is another group that is honest straight up and says OK explain this too me, ask questions and learn the process. The last group comes across as terrified- either straight up to my face or round about.
I have spent years doing things to show others that I am not "normal". I have had various piercings, I have gotten tattoos, worn my hair different. My clothes are rarely the typical runway fashions that year. I have never had much trouble speaking out for my beliefs- popular or not. All things that put you in a "different" group.
My newest group and label EPILEPSY has brought out emotions and fear from people that somewhat surprises me. I know it's scary. I have said Epilepsy was one of my greatest fears. After the past two weeks I feel like a Monster. A real life tried and true monster. Before you feel bad,  stop. I would be lying if I said I liked it- BUT what do you think is an underlying message of the tattoo culture, pinup world, especially the fame and fortune of vampire and werewolf books - even the summer hit Shades of Grey. All the listed are things I admit to love and enjoy. All include monsters, freaks, weirdos, whatever.
I have a list of tattoos I have really wanted badly. I have dreamed of one for years. I haven't understood and actually quickly disliked its popularity so I dimissed it. It's a sugar skull. Their meaning had no obvious connection to me. After the past year/week or so, I looked at a hand painted sugar skull I received as a gift from Brett many years ago. The vision I have had of the skull, flowers, anger, happiness and health I realized is my visual of epilepsy. The image I have seen for years, talked about. I didn't understand it and refused to use the image until she meant something and spoke to me. She is terrifying to the undiscerning eye yet when you look deeper yes there is torment (illness) shrouded in wonderful beauty (love, friendship, kindness and wisdom).
We miss out on so many things watching our own thunderstorms and basking in our own glory. Don't wait to find out what your Monster is- love it, embrace and make her your beautiful. Those important will embrace her no matter how scary she is because her strength will shine through.

My Epileptic Day- How does it sound?

Ok. I just finished a seizure about 30+ mins ago my speecj is still gone anf I am really f6ying hard to not sqre2 uup my wordß. I thinl people want t9 kñow goow i funxionafte4.
This one happemed bc 7 got to hot i think.i wàspicking u0 and all the suddem breath waa bsf likevdog pamti g. Laid dowm bret5 got shot and held on to mr. We were Hobbs video becausr it wld answer lots of questions. Brett was so busy holdomg me still it didn't happen.
So I am going to try to translate what I said above. OK. I just finished a seizure about 30 + minutes ago. My speech is still hone and I am trying really hard not to screw up my words. I think people want to know good how I function after.
This one happened because I got too hot I think. I was picking up and all the sudden breath was bad like a dog panting. Laid down before Brett got shot and held on to me. We were going to video because it would answer lots of questions.  Brett was so busy holding me down it didn't happen.
The above was after my second seizure today. I am typing all of this about 3 hrs after it ended.
My first episode was odd. I woke up used the bathroom and for some reason didn't return to bed. I jammed between my big and middle toe very hard on something unknown. I am not sure what I hit it on however I was near the refrigerator and thought last time this meant seizure. I did an ativan injection and sure enough. Luckily once it was over I went back to sleep a few hours. My left food and leg- not really sure what hurts. My quad muscle is sore but the ankle is very tender as are the toes.
My struggle for now. I have increased the Keppra to 1000mg 2x a day this morning. Brett needs to work this week. My son goes back to school. What do I do now? I can't be alone. It's to dangerous. Its overwhelming to think I need a babysitter, and one that can not just watch me but is strong enough and willing to do what's necessary.
I need to get a paycheck coming in. My prescriptions alone require that I have some money coming in. I feel like my brain is shut off or fuzzy all the time- side effects yet again. My body hurts. There is no other way to say it. Too many seizures too close together and it all hurts. I am worried I have injured my ankle but hopeful no swelling is a good thing.
This is epilepsy for me today. Confused, concerned, lost, hurting.... not feeling easy today.

Strength and Love

I am never surprised by the strength and love that friends provide. They all serve different rolls and do very different thing - in the end filling my heart so full. I sat at a birthday party tonight and watched a small section of our friends wondering - how did I get so blessed. It amazes me how God provides.
One challenge when I look at my life is how does Brett continue to work and maintain his life and sanity despite my epilepsy. As I have said he is always the first one here for me, the last and everything in between. I know he must keep some independence.
I have gotten friends to help with little (and ladies understand important) hair appointments. I am blessed that my hairdresser is one of my dearest friends. She does everything to not only accommodate but keep me feeling like myself no matter the barriers.
Yesterday I spent the day with a friend that has witnessed my seizures repeatedly - understanding exactly what I do and how to handle it. My hope was despite a seizure Brett could stay at work. Unfortunately, I had one but all went smooth. As soon as Brett heard he came and got me - worried of course. It was very hard to experience the seizure with someone else but I got through. One challenge time will get us through.
That seizure was different - I remember most of it, I know how long it lasted, how long speech was gone- but afterwards I was very confused. I remember Brett getting me ice cream and eating it- this is something I often want after episodes. I don't remember where we went, I don't remember coming home, I don't remember changing or why I did. Luckily Brett identified my confusion and cancelled our dinner date as I wouldn't have been very fun. I went to sleep at some point until Brett woke me up with dinner made.
Today a friend and I went to breakfast while Brett knocked out a big hike. Something dawned on me after breakfast, the diagnosis of epilepsy has made some changes that are very important. I have had seizures now for a year. That part isn't different, only the name is. All of the sudden people feel either more comfortable or responsible to ask how to handle me if I have a seizure. Lots of questions about how they look, what is expected, who does the ativan shot and where? How long will it last? I will have to write an entire other blog answering those questions.
The opposite reaction I have gotten is oh so and so had epilepsy and has forever is fine and you will be too. No worries type approach, comfort with the disease and what it entails.
I see every response I get as valuable. I appreciate that I am safe enough for folks to ask questions and be honest with. I know that as I began writing on Tuesday I wasn't ready for that yet. I am moving through the process. Sometimes maybe I am stronger than others, even though it's a year old to me "EPILEPSY" still sounds brand new. Ordering my med alert bracelet was a real reality that things have changed.
Tonight Kate told me- keep writing whenever you can. A few months ago Nancy told me the same thing. She personally found it so healing when she went through hell. I didn't ignore Nancy, I was a loss for words. It was confusing, scary and physically difficult to do it. Now I understand why, hopefully that will make writing in the future easier.
I close with a happy birthday to Misty - such a beautiful soul. It was wonderful to see you! Darlene thank you for having us. I love your music and only wish the lightening hadn't interrupted our visit.

Officially Diagnosed - Epilepsy

It's funny how life works isn't it. My entire life I had one overwhelming fear- seizures, Epilepsy. No reason, no cause just remember seeing one on TV and having the strongest fear to it I ever had to anything. Now I am officially a diagnosed confirmed epileptic.
A week ago if you had asked, " How would you feel if the doctor says you have epilepsy". My answer would have been- ecstatic! It would prove that those other doctors were idiots, close minded and ignored the obvious. I would finally have a name for the demon and I will be truly able to fight the enemy. Yesterday as the words came out of the neurologist/epilepologist I felt the burning of tears, fear, defeat and disappointment.
After a day or so of thinking, I realized that I knew that it was epilepsy deep down all along, however, I held out hope that we were going to find something that would be fixable. A medicine I could take and they would become a distant memory. As ridiculous as that sounds especially now - that's what my heart wanted.
The last few days have included so many tears, yelling, talking; and texting. I am humbled by the reactions, love and strength from old and new friends near and far. I must say my longest friends have literally held me up with their word late into last night and today on the phone. Friendships that last 25-30 yrs are amazing. They know just the right words, how I am feeling and reacting even why better than I do. I know that life has sent them far away but the miles have been erased through this. Friendship is what keeps me standing and breathing on these days. I can never find the right words to say thank you to everyone. My kids who stopped their lives to truly check on me, understand, help during seizures. I am always shocked at their acceptance, understanding and love.
The past week has been physically and emotionally challenging. Last Monday I experienced one of the worst seizures in a year. My 15 year old son was an amazing responder. I was risking breaking my ankle and he got pillows placed. He held my arm and nails at a distance when I uncontrollably attempted to give myself a black eye the claw a hole in my face. He kept a sense of humor the entire time and didn't complain once.
Since, in a now 9 day period I have had 6 seizures. One an 18 hr Partial that was very confusing.  As always my husband is my number one advocate. He has been home with me driving me to appointments and very of my conscious and logic levels - which seem pretty out there sometimes.
One major challenge I have been having is typing/spelling. If the phone didn't tell me every other word is wrong with that nice red line and suggestions- I would be none the wiser I have noticed. Even with the red lines I can tell notjjing is spelled wrong but I am not sure what neese to be fozed.
Yes those mistakes were intentional. I want to show how often in just one sentence I am re-writing constantly. When I am pre-seizure my ability to even fix it is impossible- turns into a great code between Brett and I. That all said I apologize now for any unintentional spelling and grammar issues.
As for me, I haven't been able to worm for the obvious reasons but also not so obvious like the computer screen flashes and I am out for the count. I have been trying to get more leave donated but so far been unsuccessful. The doctor thus far hasn't been convinced to let me work solely because I need income- especially after finding out my two anti-epileptic drugs AED's are $245 per month not including my other four monthly medications. So much for our amazing insurance. Apparently breakthrough seizures with generics are perfectly acceptable including the brain damage that happens every time.
My other news on Monday was that I have hat appears to be a femoral hernia caused by the violent nature of my seizures. My CT scan has been done, now waiting on the results and permission from Cedars to repair that as well as a damaged scar from early last summer that is causing some issues.
One closing remark is a little piece of me is angrier than ever at the doctors that used the diagnosis "psychosomatic" after merely speaking to me foe moments - assuming that based on my one page medical history it must be from getting married and having kids early. I understand doctors do NOT have all the answers- especially when we are talking about the brain. Learn how to swallow your pride and make a referral or admit you aren't sure what's happening.
I will try to post again soon. Please understand for now it is not easy and quite time-consuming. My brain is quite tired and sore from the effort. Hopefully this will improve over the next month and new meds.