Monday, December 31, 2012

In 2013....

In 2013, I resolve to not let my Epilepsy stop me from life, my dreams and my attitude.

Happy New Year my E friends!!!!


Sunday, December 30, 2012

Abandon everything you know and....

This literally made me cry as it hit so close to my current situation in life, it made me realize how much I just need to let go of the wreckage of my life and commit to a fresh start. I have done things I am not proud of through the last several years and I just have to accept my faults and move on.

Abandon everything you know and....
By Tania Kazi

Come back to yourself with a child’s mind.
An empty slate, a tabula rasa, your vast blank canvas.
Here…take these bottom-less pails of paint, dip your hands, elbow deep in the yellows and the saffrons, the rusts and the reds. Peel your shirt off, and with that, all your fancy ideas of who you are. Bathe in the blues and the indigos, the violets and the lavenders, the emerald greens of the unfathomable expanse, and roll on your canvas…spilling colors in shapes of you, created, destroyed and re-visited.
Roll till all of you is blended into the canvas of your life. Give. That. Fully.
Now, take your masterpiece and wash it in the ocean…let your colors bleed into the greatness of infinity, become a part of That. And then return. To paint again. Afresh. Anew. Child-like.


Walk a desert terrain, at least once. Bare foot. Feel the heat, let it singe into your feet, scald and blister you, let it travel up to your head. Let the sweat from the tip of your mountain-self trickle down your parched face like briny sea-water, your extended travels metamorphosized into exquisite pearls.
Kiss the fire of the sun inside your chest. Burn your lips at that touch. Love a little more deeply, a little more freely, a little more carelessly. Taste the dust off your lips, kiss that, of another. Give unabashedly and then…fly!
Don’t hold. Throw the shackles away, love has no need for them, nor does the beloved.



Sit inside the red temple of your heart. Turn down the din, shut the world out. Ring all your church bells and sing your chants, burn the incense and smoke the sage…Inhale. Deep. As though this breath is the last one. Don’t sip the tea of wisdom…crest and fall, roll and swim in it.
Let your devotion spin you, move you in the ways that Creation meant you to move. Dance in your love. Worship passionately, fearlessly, throwing obedience to the wind. Come as you are! Eternity has no time for your mental meanderings. Throw away the keys of your thinking-mind, abandon them, and your reasoning, your do’s and don’ts and silly dogmas. There’s no place for that, in Love.
And once you’ve swayed and hexed your senses with devotion, then sit in the silence of a cemetery, by a grave, a vacant space- yours or a loved one’s resting place. And absorb the earth below, the plants, the soil…let it sink densely inside of you. It’s aroma latent with hidden secrets. Take that fragrance and absorb it, so that you or the one lying below are not divided by worlds anymore.
Let it’s haunting silence permeate your every cell. Receive it. Fully. Open.
At the deepest level. Let it carry you to a world where there are no questions to be asked, nor answers to be sought. With your breath, follow that holy ache inside your heart, roar your way to the derelict dusty steps that lead you to forbidden paths.
Lose yourself. Knock on every door. Abandon your road maps. Do away with your baggage, there is only room for one and that’s your tattered soul. Fumble through the darkness, bump into every wall, bruise yourself blue until you feel your way to the very center of all your beginnings.
And when you reach that center, strip the cloak of fear, and the one below that, if there’s more, then come naked. Now enter the altar of pain. Hold your hands out and rock it gently. Welcome to the union with the forgotten mother. Pain is that kind of a teacher. With Love hold it close, until it begins it’s evanescence from your heart. And then let the silence grow thick and opaque around you, forming a vortex within vortex, let it fall around you like a dark velvet curtain, dense and impenetrable.



Now begin carving your oblivion into it.
Cook a meal. Naked. Barefoot. For no other reason but that you’re alive, that you came to experience this life with the body consort. So nourish this friend- the body, feed it, hold it and nurture it. Eat with bare hands, let the juices of never-before-tasted foods paint your face, smile to the heavens for the blessing of Being Able To Do That.
Caress the body’s weariness with your patience, uphold and honor it’s right to solitude, away from examining eyes. Examine yourself for letting someone examine you. Connect the dots and walk with the mysteries. Don’t always be seeking answers, float with the questions…kite-like..abandoning everything you know.

Wednesday, December 12, 2012

My Self Pity and Apology

It was pointed out to me yesterday by someone how selfish and ungrateful I have been by "begging" for money in my current situation and it really hit me hard last night. I talked with my sponsor last night and have decided to take the site down. He told me that it's ok to ask for help, but not in that manner. This actually has caused me to not concentrate on my sobriety and being content for the opportunities I do have. I got myself into this situation and I need to deal with the consequences of my actions.
I sincerely apologize to anyone that I have offended, annoyed or pissed off by my actions recently. I understand the ignorance I have had and will reframe from continuing the self pityness I have had. My sincere apologies to you all!!! Thank you for your support!

Sunday, December 9, 2012

Lessons Learned...I have a purpose

I realized today that there is something worse than death..a wasted soulless life. One that you do not live to your full potential and seek happiness for each day that you are given. I choose serenity and happiness for everything, even the hard times that allow me to grow and learn.

I am grateful for today and for the things to come. My piece of mind and acceptance of finding my happiness. In doing so, I will unlock so many thing I have held onto for so long to set myself free.

Friday, November 30, 2012

Mending

So the last several months has been allot to take in and deal with. I can honestly say that I am grateful for what I have in my life and am working on staying positive. I have learned so much about myself and to not take things for granted like I have been. It's not easy,but it's one day at a time right now. 

I am working on self recovery right now and that's a strong one for me in many areas. I have let so much of my past build up inside of me and now I am taking moments to handle them appropriately and reconnect with myself. I am not gonna sit here and go oh whoa is me, I am gonna face things head on. 

In the last month I have had 3 seizures and I know allot of it was due to stress. I am working on managing that better and am hoping to exercise more now. Some of the things I have started doing is reading, journaling and working on my relationship with God. I am on LOA until 03/24/13 so I can get the further help I need for therapy and deal with my depression. I am not ashamed for feeling this way anymore. I used to use all my might to deny it and that was very healthy for me. 

I have been an alcoholic for some time now, too many years and I am dealing with it now by choosing to stay sober for me, no one else but me. With out my sobriety I can't be right with myself or my wonderful children. It's a terrible disease only if you choose to not get help for it. I have allot to take care of in life and many of them is to start making amends in my life with people that I have hurt in many ways. October 13th I relapsed and tried to take my own life which resulted in me being put into ICU and not remembering what I did to myself. During a black out I had slit my own throat and was rushed to the ER. Waking up to 28 stitches, 54 staples and allot of blood lost, I realized than I had a 2nd chance in life to live it right and to live it sober. I am not asking for self pity or to be forgiven, as I am simply sharing my experience and growth.



“It is good to have an end to journey toward; but it is the journey that matters, in the end.” 
― Ernest Hemingway

Saturday, November 24, 2012

How I am doing

Where do I start, this last 6 weeks of my life has been the most educational experience in my life. I hit a rock bottom and survived a horrible event and one that I am thankful for still being here.

I really don't know what to write at the moment other than that I am grateful for being in love with life right now. In the last 30 days I have had 2 seizures and am ok. More than ok, I am great. I no longer feel ashamed for having epilepsy and know more about it and what my body does to create it.

I truly appreciate the support I have received from so many people and am overwhelmed with joy in my heart. I am at a really good spot in my life currently and for once am grateful for it.

So I just read the letter I wrote on Oct 13 and feel like such an asshole for it. The hurt and destruction I caused is only my fault and I will deal with the repercussions of it. I am glad that I was ready to read it to know what I wrote finally. I am sorry to those I have hurt, those that I pissed off, to those I humiliated. And I am mostly sorry to my kids and Emmy. I can only pray that I will be forgiven and can move up hill from here and continue to get well. I am happy that I am alive and will spend the rest of my life proving it!!!

I just wanted to do a quick update. Hope everyone is doing well.

Sunday, October 7, 2012

I had a great time with my boys today, and I did something good.


Today has been a wonderful day by all means in life.
I got some good sleep finally last night and got up early and cleaned and watched a movie before getting to go take my boys to the park.

I took Tyler and Jacob to Verona park and we played Pirates and Tyler kept calling me “Captain Daddy” . We had so much fun and it was just pure fun to run around and act like a kid myself with them and see the smiles that kept stretching out their cheeks with their beat red faces from the heat.  I helped Tyler overcome a small fear of one of the playground areas and he was so happy and Jacob, wow, but a little grown up. Just wants to do everything on his own. Tyler is going to own the world one day with his smile and grace and Jacob is going to do something so wonderful in life to change this world.  I can see it in both of them.
As I was pushing them on the swings and hearing their giggles and laughter from going up so high I heard this faint “Help Me” and looked around because there wasn’t anyone around. I then heard the cry again and saw a guy laying on the ground over by the basket ball courts. As I looked all I saw was blood on his face, so I told the boys to just sit on the wall and I went over there and found a man with his forehead gashed open to the skull and blood squirting out. He was really out of it and made out that he had fallen and hit his head. His knees were bleeding as well. I ran and got a shirt and some wipes and applied the wipes to the forehead wound and tired the shirt around his head. I than called 911 and told them what the situation was. I was able to get out of him his name, age, and any medical issues and than he passed out again. I than moved him into a position to keep the blood from coming out so fast and he woke up and said he was in pain. I was still on the phone with 911 and they asked me to check to see if his pulse was slow and it was. 

They dispatched a Fire truck and ambulance and as we waited my boys patiently sat on the wall as I attended to this gentleman. Than another man came up and assisted as well. We got his phone and were able to call this guys brother who showed up before the Fire truck. The guy that was injured is named Jose and he is 37. That’s all I knew. He mentioned his wallet was over by the courts and I ran over there and found an enormous blood pool and then followed the blood to the restroom where I found his keys and once I came out I found another pool of blood. In front of me he was already bleeding out bad and to see those 2 pools I knew he lost a lot of blood all ready.

Finally the fire truck comes down the street and I ran out there flagging them down and when the Captain came out I filled him in on everything I did and what information I had about Jose. The paramedic arrived and attended to him and was told that they are taking him to the Trauma Unit. I got a huge thank you from his brother and the captain said I pretty much saved his life due to the amount of blood lost. It was crazy, I was shaking, scared and at the same time constantly turning to make sure both my boys where still on the wall.

I pray that Jose is ok this afternoon and was so glad I heard his cry for help. Because if I didn’t, who knows. One of the Firemen asked me if I had emergency training and I mentioned I was in the Army and also worked for a medical company and that I have Epilepsy. So I had enough experience to ask the write questions and do what I could with what I had. He said he thought I was just a huge “ER” fan. LOL. I do love that show!

As they were getting his vitals and onto a stretcher Emilee had pulled up so the boys where with her now and I was still talking with the EMT’s. As I left the scene I got to tell Jose I am praying for him and to get better and walked over to Em and the boys. I was really shaken up and my adrenaline was still pumping. The boys of course were so stoked to see a fire truck and as we got ready to leave, the fire man I talked with came over to thank me and gave me badge stickers for the boys. You should have seen their little faces, just ear to ear with a grin. It was priceless.

We took the boys to McDonalds to pick up happy meals and the sheriff dispatch called me to get my home address and thank me. This isn’t something that I should be thanked for, this was something to me that a person was injured and needed help and that’s all I did. I helped him until the EMT’s got there. With my medical continuations, I have others step up and help me in my time of need and this all makes me realize how fragile we are. I was just happy that he was going to be ok.

So today my thoughts and prayers are with Jose and to a good recovery.  I am praying for you buddy. Best Wishes and good thoughts.

It’s good to know that I did something today not because I had too, or was forced too, it was because my heart lead me to do so. You just don’t see that too often in this world anymore and with that said I personally want to thank everyone who has helped me and prayed for me with everything I have ever dealt with. 

Thursday, October 4, 2012

I Will FIght To End Epilepsy


It's been a bit since I have written about my Epilepsy. Everyday that goes by it's constantly on my mind. I am happy to announce that for about a month and a half I have been seizure free. My new meds seem to be really working for me this time and it's such a big relief.

During the time from when I was diagnosed to now it's amazing how far I have come. This is the 3rd medication I have been on this year and it seems that the 3rd time is the charm. I love how I am seeing good results, but I am still unhappy about it. There's so many people out there at knoww so little about this disorder and how much it can truly affect someone. This last year has been a wirlwind for me emotionally and physically and I am finally starting to find myself again. It feels good that I am getting to a point where my seizures are under control.

I am very luck in the timeframe that I have had to make such good progress finally. I know others that suffer from this may take longer or even shorter time frames to get this under control. Epipelpsy has been something I have always been able to discuss opening, but deep down, I always felt that it hindered me from much more than life. Deep down I have felt ashameed, embarresed, and misunderstodd because of this disorder. And no matter how hard I fight it, it does get the best of me at times. I have learned to not only deal with it, but I have come to terms to accept it in my life and take it for what it is and move forward.

Due to this disorder, I have dedicated so much of myself to not only seek help, but become an advicate for Epilepsy Awareness and promote it to others when I can. We have Team Barton getting ready for the LA 5K walk at the Rose Bowl at the end of this month and we have reached almost $2,000 towards the foundation and I couldnt be prouder. To know that because of my experiance and disorder that I am not only helping myself, But my team and I are helping others.

I used to feel sorry for myself when I got diagnosed, and now I embrace this as a part of me mind, body and soul. I have this and live with it. And I can truly say right now that I accept it.

My goal is not only to raise funds for kids and parent's that suffer from this to get help, but my goal is to spread awareness in the Inland Empire and get support for those that need it and want it.

I just finished a 7 week leave and learned deep down inside of me what I am capible of and what I am not with. I cherish every second I have in my life to know that I am breathing and alive. I dealt with this for a good portion of this year and how depressed I have been about it. But through strength and support I have learned to not fear it and to embrace it and do what I can to get the awareness out there for those that haven't found support or need more info about Epilepsy.

Team Barton will be joining the LA Chapter at the end of this month to participate in the 5k to raise funds, but also for myself to get out there and accomplish things that I have lacked in. We have been so fortunate as this is Team Barton's 2nd 5k Walk this year and we have raised just over $7,000 this year to help others, being kids going to camp, or adults getting the counsiling or support they need.

I truly do this for the kids out there and to help them get into Camp and have the support they need. Living iwth this can take so much out of you and I am only 34. I can't imagine what it's like for a 10 yr old or for my cousin who is younger. This is a big disorder and with statistics out there, Epilepys is bigger than Breast Cancer and Heart disease. But if the wareness isn't there, how are others to find a place locally and to get support?



This year I have been on leave 2 times and it has effected my job, my life, my mind and most importantly my family.  Team Barton holds strong right now to continue to get funds to chapters outside of Riverside. But my main goal is to get a Chapter in Riverside County and promote awareness within my own community.

I also have been fourtined to have my 12 year old daughters support and involvment, she was the key inspiration for me to become an advocate. So support's me and I couldn't ask for a better kid.

My point in this blog entry is not only to share with others with my struggles, but to spread the awareness and get the support for it.

October 27th Team Barton will be going to the Rose Bowl to participate in the 5k and I ask you to make a small contribution towards this foundation and disorder that I live and breath with everday.

If you would like to join Team Barton you can following this link: http://give.end-epilepsy.org/site/TR?team_id=1896&fr_id=1060&pg=team

I am pleased to announced that we have raised $1835 for this foundation and our goal is $3000. Any contribution will help no matter how much you donate.

Team Barton is on the rise, and not only that, but being the Team Captain, I take this to heart as I live with this day to day. I just want to provide help to others that need it.

Tuesday, October 2, 2012

Walk to End Epilepsy 5k at The Rose Bowl Oct 28th, 2012 - Need your help!!


Dear Friends, 

I am participating in the Epilepsy Foundation of Greater Los Angeles’ annual Walk to End Epilepsy on Sunday, October 28, 2012 at the Rose Bowl in Pasadena because I have epilepsy and hope to have your support or have you there with me! Our goal is to raise $3000 and we are currently at $860.00!
Team Barton 2012
To join Team Barton you can go to: http://give.end-epilepsy.org/goto/TeamBarton

If you would like to sponsor me you can go to: http://give.end-epilepsy.org/goto/JonBarton

 Your involvement means a lot to us and makes a difference for thousands in our region. Thank you! 

Your involvement helps support care, advocacy and education, today, while investing in research and hope for tomorrow. 
Please join me and register as a member of Team Barton. If you are not able to join my team, please consider making a donation supporting my participation!! Every little bit counts. Even a small contribution of $5.00 will go a long way. 

One Day At A Time, 

Jon Barton, Captain of Team Barton

Friday, September 28, 2012

Great News!!!


Hey everyone, I just got really good news. I have been cleared to return to work on Monday and I really can’t wait for it.

I had my appt today with my nuro and he is happy with my results of being seizure free since I started the new meds and he feels confident that we found the right medication for me.  He was also very happy to see my weight loss and even noticed that I had color in my face and was very energetic.

So I talked with work and they are beyond ecstatic to hear how I am doing and that I will be back on Monday. I have been missed greatly from what I was told.

These last 6 weeks have been amazing for my health and eating better and feeling better. It’s like the old Jon is coming back to life. I am excited to come back on Monday. I am proud of myself and accomplishments physically and mentally of allowing GOD to guide me into a much betterplace. Spending time in AZ the last few weeks did me wonders to clear my mind and make goals for myself.

I want to truly thank all my friends for their continued support and for those that believed in me. I couldn’t have done it without the support from you all and I can’t wait for “Jon” to be back and live like I am supposed to.

While in Az I fought some demons inside of me and have been able to work on them and let them go. Yes I have Epilepsy, but Epilepsy doesn’t have me.

I look forward to maintaining a healthy life and continue to work on my weight. Today I weighted in a 240!!!! I didn’t believe it. I am so happy with that because my weight has been such a big problem for me and I can’t even remember the last time I weight this much.  My goal is 200 and I will strive to reach that goal.

Epilepsy is such a strong disorder and no matter what I did this year it still got the best of me deep down and became sorry for myself, and now I can happily say that I got this. “For The Win” as a friend told me earlier.

This cloud that has been haunting me deep down has been cleared and as each day goes by I se the sun so much more and feel better.
Take care everyone!!!

Saturday, September 22, 2012

The Fighter

How am I doing, I am doing well.

Since I have been on my new meds, almost a month now I have been seizure free. :) I have also physically felt a lot better through the last couple of weeks and feel so much energy back in my body. Horah!

I am still in Arizona and will be returning on Tuesday. I see my nuro on Wednesday and should be released back to work for October 1st.

I have been doing a lot of 1 mile to 2 mile walks while I have been out here and have lost some more weight and will be continuing to do that once back in Cali. I have also been doing a lot of self discovery  and learning a lot about myself and setting some goals and putting some healthy priorities straight.

I have gotten a lot of Sun!!! It's 117 degrees right now and just got done laying out again. So thirsty for some water! LOL



So I am well, and doing ok. I am a fighter and becoming a damn good one! 

Saturday, September 15, 2012

New Beginnings

It's amazing of how you can finally admit something so personal and life changing to someone who understands and listens to you. I had such a bad afternoon and negative mind set to only end the evening feeling so much better on things and have a weight off my chest. Tonight was a hard thing to do, but once out I can see hope and a healthier me. It's great to have an amazing friend to come visit me and talk with me and understand my pain and allow me to come clean. God does work in mysterious ways and I can only imagine the doors that will now open in front of me for a healthier future. I have learned so much these last couple of weeks of what I need and now have a starting point. I am thankful for my buddy Pat. I have been taking so many things in my life for granted and can really say that I have a new found respect for what I have in my life. I have a chance to make things better in my life and I am the only one that can make that happen by letting go of past hurts, anger and pain.

I will be the me I know I haven't been in a long time.

Thursday, September 13, 2012

How I am doing Update

So just wanted to share that since I have been on my new meds that I haven't had any seizures or dizziness!!!

The new meds also have taken me out of that medicated funk I was in while on. So I am glad to be off of it as I feel like myself again.

I return to Cali right before the 26th for my doctors appt with my Nuro and since I have been doing good I should be fully released to return to work on Oct 1st.

I have been enjoying my rest and relaxation while here in Az with JT and Marlo and my god kids. But I am look forward to coming back to see my kids and have a whole new perspective on things. I know it will be one day at a time, but I think that's what I will need.

I am dealing with some personal issues right now and I have been given such a reality check that I still have a lot of self exploring to do and support I need as well as getting my own place of some sort and just have to be patient with this whole process.

That's me in a nutshell right now, I hope you all are in good health as well.

Monday, September 10, 2012

"With one salute I found that I am not magnificent"

Feeling so alone and lost right now. Many things are opening to me and I have been given a big reality check in life. So much so that I am losing my family and it hurts so bad right now.

I really have no other words right now to describe my headache and what I have caused to put myself into this situation. It's all my fault.

Friday, September 7, 2012

Opening up myself towards letting go


So tonight was interesting, as I sat down to review my Walk to end Epilepsy site tonight and send out a new email I accidently imported all contacts from gmail so it was sent to over 600 email addresses gmail has stored since I signed up.

On that list was my Uncle Steve, my real father's brother. My father password away 9 years ago this last August and I meet briefly with my uncle to get some belongings of my father. I really never knew Uncle Steve, just that he was there and we had lunch and he did a big part of making the arrangements for my father.

I was young and never thought to ask more questions about my dad since I had briefly spent time with my father for 2 weeks about 4 months prior and he meet his granddaughter for the first time. Kaitlynn was about 3 at the 3 at the time. She was his only grand kid at the time and he was tickled pink by her. I had gone with "Pops" as I called him since we had recently reunited after God knows how many years. So it was like meeting him all over again. I spent 2 weeks with him and going to his home town, him showing me his high school and doing all the things he wanted to do while he was visited since he lived in Texas. One of them being able to see Kaitlynn as much as he could and got this picture of them two.



That August I received the sudden news of his passing and to me it was a shock as to never really dealing with a close family member password away other than my grandfather. So during that time I found out that he passed on from a self inflicted action. My father took his own life. Again, I was in a state of shock, I didn't understand, I didn't want to hear it. I was angry, I was upset that he did that to me, especially after him meeting his granddaughter and him and I becoming close as we stayed in contact after his visit.

For years I never understood why, or felt that it was selfish for him to do so and I carried that with me  for years and years till even tonight.

By my email that was sent out, my Uncle Steve reached out to me and he called me since my cell number was in my signature. I got a call this evening from the Kingman, Arizona area and couldn't imagine who it could be until I answered and heard his voice and instantly recognized it. A voice I haven't heard in 9 years. It was my uncle Steve, and I was shocked. His voice sounded just the same and with a friendly 'Hello Jon, It's your Uncle Steve" we launched into an hour or so phone call.

I caught him up with how I am doing and how many kids I have, what I do for work, told him about being diagnosed with Epilepsy last November and than my uncle stopped me and was shocked to hear that, especially for someone my age. You see, my father had a brain tumor when I was young and had surgery and while the doctors said it went well and my uncle flew out and even brought In & Out filling the Hospital floor with the aroma of Double Doubles my father was beyond excited. I was really young at the time and remember knowing a bit about it, but I found out tonight that the tumor had come back and they went in again to remove it, however they removed to much. After that point my father began having seizures due to the error in the surgery. I thought the tumor had caused his seizures for many many years until tonight.

I never knew the extent of his health conditions, and even noticed while he had visited me that the amount of medications he would take morning, noon and at night was so many. I never thought to ask.  Well I found out tonight it was due to the complications of his surgery and he had continued to have seizures. Once he was driving over and over pass and crashed. He had a seizure while driving. He had several and he never once mentioned them to me. I had always thought after the tumor was out, he never had them again. I now know that in the last years of his life his was suffering from them and once even broke his back in 2 places due to a severe one.

I know my Epilepsy isn't related and him and I's circumstances are different, but I never realized he suffered that much and he damn well kept it to himself. Through my talk with my uncle I felt almost relieved, some sort of closure to his passing. I know it was self inflicted and he was dealing with much more than seizures at that time in his life as well. But tonight I felt an actually connection 9 years later as to maybe understanding a little bit of his mind set before he passed away. A little of what he had to deal with in life as I am now dealing with it now in mine.

Uncle Steve and I talked about allot of other things and it was too me a great talk. How funny that I am out here in Arizona visiting friends and trying to take some soul searching time to figure out my situations in life and to end up connecting with my uncle. I fell that I can let go and just continue to pray that my father Larry is resting peacefully. That Pops is ok and I am ok now as well. Here's a pic of my brother's and I with my father when I was really little. I am on the far left.



My uncle mentioned he was very proud of me knowing that this past almost year how I have been doing my best to look Epilepsy in the face and not hide behind it. I know that at times I do hide and I know that's caused allot of issues at home with Em and I. I shelter myself to not get hurt or to try to hide from it, the pain, the aches, the uncertainty of asking "Why me God? Why me?". He reassured me to not be embarrassed by having Epilepsy, to continue to stare it down in the face. It certainly has made me look back tonight of emotions I have felt this past year between Epilepsy and other things in life and I can honestly say that I have lost my perspective in many aspects of my life. My priority should be me and damn well take care of myself, because if I can't be right, others around me won't be as well. And this brings me to my thoughts of my sweet Emmy, I can't imagine to any extent of the emotions I alone have caused her during this last year and years prior with allot that I have been through in life.

I have always had the feeling that I was dealt a bad hand with many chances in life, and I always look at the negative so deep down into it, and forget to actually open my eyes to the many more wonderful things that surround me. Her, the kids, life, living, having a job instead of bitching every day about it. It's not always about me, as I hope to heal, I hope that I can be just as there for Emilee as she has done for me. She needs support from me as well, I shouldn't be constantly leaning on her emotionally, that is something I need to work on. I need to be better to myself so I can be better for myself in order to be better for her, my children, my work, my life. My damn life that I have been so damn blind to, it's right there in front of me and I have been hiding away in it like a coward. I felt that I have learned allot tonight and will carry this going forward.

I will end this off with this...I will be ok. I will heal, and I will have faith.

Thursday, September 6, 2012

Black & White

As we soared through the clouds this afternoon in and out of darkness and light due to the weather it reminded me about the two sides of life, light and darkness. Day and Night. Good and bad. Life and death.

It makes you think of what's really important in reality. Life is real and I saw my reality as I heartfelt said good by to my boys, Emilee and called Kaitlynn before my trip to Arizona. Today hurts, maybe tomorrow as well, but in life through thick and thin, I need to be right with me and to be as healthy as I can for my family. On my flight I saw a black cloud intertwined by a white cloud and it was the oddest thing I have ever seen. While looking at it you couldn't tell which appeared more, but it was obviously present and a sign of seeing two things intertwined like a fight with 2 alley cats.



It brought me to think about Em and I separating for a while to get the darkness out of our cloud of life. I can't say what will be in my future, but I hope it's a healthy one with my family. This time maybe something to get out of our way now to enjoy the future. But of all things, I must get any darkness out of me.

Sunday, September 2, 2012

Another Leave and new meds

So had my doc visit on Friday(insurance issue got resolved the night before) and have decided to switch from depakote to Oxcarbazepine for the next month for my Epilepsy. I will be on both meds will switching over for 30 days. I am also on leave now till the end of September unless these new meds don't work. So it's gonna be interesting to see. How I react to these new meds. Thank you all for your thoughts and prayers while I fight through this. Always hold hope!!

This year I have been challenged over and over again, times where I couldn't even get out of bed due to depression over this nasty disorder or being so doped up that I couldn't remember thoughts, moments or even days. 

This has been the biggest challenge of my life and it's affected all areas mostly work and home. Dispite my efforts, Work has been my main challenge as I am the one that works while Em takes care of our children and this last year me. It's felt like I have become another child to her schedule. Because at times I can't do things on my own. Serveral times I have had trouble getting up the stairs due to how dizzy or fatigued my body was. It's worry some when you have a family to take care of, but they end up taking care of you. I have always been independent and have tried not to reliey on others to do my job as a Fiancee, Father of 3 and a careered person. I have always worked, always some how provided and right now I can't even do that efficiently. I feel blocked from it. Almost worthless and I am afraid of letting this disorder consume me more so than I have let it. 

We should be poolside with our dear friends and god kids but because of my status I am home not sure what to do until disability kicks in wondering how I am gonna put food on the table for my family right now.

I am constantly stressed and that makes those around me stressed and it's an uneasy feeling. One that I thought I can control but I can't. 

The doctors had said this wasn't going to be easy trying to find a medication to help with my Epilepsy and now I am on my 3rd one and am hoping this is the last, but I said that about the last one. Part of me feels dead in side, limited to lifes opportunities to be who I am. 

It saddens me to know that i have to be "Babysat" and can't do normal things I have done on my own for  33 years. That I have to relie on others to help me constantly. Hell, I don't even know when I will be cleared to get my drivers license to drive again and when that comes, it will be at least a year or 2 from now. 

I know that I am stronger than this, that I was never taught to be this weak and I only hope that this is the deepest I will be and I will begin to dig myself out and pursue and achieve remarkable things. 

Allot of people have faith in me that I will make it and that I have fought to young and to give it another try. I know I am not alone in this with a lot of friends and family supporting me, however when I close my eyes at night, I just don't know what tomorrow will bring and I can only hope that I wake up stronger with wiser choices and more open doors moving forward.

Thursday, August 30, 2012

What Epilepsy means to me


Just a few months from now it will be a year since I have been diagnosed with Epilepsy and I have to say that without being selfish I have found a calling to help others with their diagnosis. I know I am early to Epilepsy and find it easy to understand but hard to swallow at time. .
This last 9 months has been a twister of a storm I never saw coming. I have lost approx 70 pds, I have found new ways to manage my stress, but regardless of all that, Epilepsy always finds a way to to strike you from an untrained cobra snake. You just never know when you’re going to go done or feel ok where ever you are and that’s the most worry some part of a having Epilepsy, you just never know.
I refuse to give into this disorder, and at time it wipes me out, but at the same time I strike back to take it and place in a situation to share the awareness and speak with others to share my story and them theirs.

I see such a weakness for proper support for this disorder that it boggles me to know that our Government and HealthCare providers look at Epilepsy as a disorder and not a disease so we are over looked on many levels. But if you have heard and read the facts I have seen, Epilepsy is a bigger issue than Heart Disease. So who are we letting in our Government/Insurance advisors run this?
It’s frustrating and I have only been diagnosed last November. I can’t speak of those that have lived with it for 5, 10, 20 years.

This has to change, our voice needs to matter and be strong.  Epilepsy isn’t going away until we reach out and get the funds to do the proper research and find a cure This shouldn’t be over looked and be a lower priority that other conditions/Disorders and so forth.
We have a voice too! One that matters, one that needs attention and one that is heartfelt.
We live day to day with this disorder and need a resolution. Who will fight for it? I know I will.
Join the cause to End Epilepsy in any way or for you can. Seek out our local foundation to make it happen.

I am 34 years old stricken with this,  am I am the least of concerns when it comes to our nations children.

Lend your hand, support, and assistance to help this cause become one that is effective and deserving.

-        ------  Jonathan T Barton

Sunday, August 26, 2012

Support, Educate, Advocate, Love with Epilepsy Today, Tomorrow and each day after tjhat!


What Is Epilepsy?

Epilepsy comes from a Greek word meaning "to hold or seize," and people who have epilepsy have seizures. You might also hear a seizure called a convulsion, fit, or spell.

Seizures happen when there is unusual electrical activity in the brain. Your brain cells are constantly sending out electrical signals that travel along nerves to the rest of the body.

These signals tell the muscles to move. During a seizure, a person's muscles tighten and relax rapidly or stop moving completely. Seizures come on suddenly, and people who have them cannot control their muscles while they are having a seizure.

If too many brain cells are sending signals at the same time, it causes an overload, and a person may pass out and shake all over. People who have epilepsy may have seizures only once in a while or as frequently as every day.


What's a Seizure?

Most seizures occur without warning, although some people have a funny feeling, an upset stomach, or a weird smell or taste right before a seizure. This is called an aura. Others find that certain things may bring on a seizure, like not getting enough sleep or playing video games.

Even though a seizure may look scary, it's not painful. During a seizure, the person may fall down, shake, stiffen, throw up, drool, urinate (pee), or lose bowel control.

Other seizures are less dramatic. Someone might just stare into space or have jerking movements in one part of the body. When the seizure is over, the person may feel sleepy and won't remember what happened.
Who Has Epilepsy?

About 2 million Americans have epilepsy, including boys and girls and people of all races and ages. Seizures can start at any age, but often they begin before age 15 or after age 65.

Doctors often cannot explain why a person has epilepsy. They do know that epilepsy is not contagious — you can't catch it from somebody. Epilepsy is not passed down through families (inherited) in the same way that blue eyes or brown hair are. But if somebody's mom or dad or brother or sister has epilepsy, then he or she has a slightly higher risk for epilepsy than somebody whose family has no history of seizures.
 
How Can Doctors Help?

If a person has a seizure, doctors may do some tests, such as a CAT scan, an MRI, or an electroencephalogram (EEG). A CAT scan or MRI helps a doctor look at the brain and an EEG records brain waves. Don't worry — these tests don't hurt at all. Blood tests may also be done.

All of these tests can help doctors try to find out what caused the seizure and if a kid might have mo
re seizures. But sometimes seizures are a one-time thing — half of the kids who have one seizure never have another one.

Most people who are diagnosed with epilepsy can control their seizures by taking medicines. As they get older, many kids with epilepsy get better and can stop taking medicine. For some kids, it may be difficult to get the seizures under control. A special diet or surgery may be needed.
Are Kids With Epilepsy Different?

People who have epilepsy may need to be careful in places where they could get hurt if they have a seizure, like a high place or in the bathtub. And they may not be able to do certain sports, such as boxing or scuba diving.

But other than that, most people with epilepsy can live normal lives and do what everyone else does. They can go to school, attend college, and get jobs. They can get married and have children.

However, even if epilepsy doesn't limit a person's ability, it can make a kid feel different. So, if you know somebody who has it, you can help a lot just by being a good friend.

Let’s keep Hope alive sharing your story for the world, for others, for those willing to help. Let's take what we experience, what we learn and educate others. 

My new goal is to do what I can to not be just an advocate, but lead by example. To take my dealings and not only heal from them, turn them into lessons and share with them. 

Everyone has their own thought's of epilepsy and whether it's a disorder or a disease, either or, it's there and we need funds for research. We need support for our children, our siblings, our parents, to our grandparents. We need accessibility to resources to the Epilepsy Foundations. We as human beings have a sound soul to reach within themselves and share what we can in any form-we can. To be leaders, to be educators, to be health professionals. 

Not am I only passionate about Advocating for Epilepsy, but I also contribute for breast cancel, Autism, Pancreas Cancer, CHP Association and the Veterans association. I can't do so much alone, but could you imagine if each person contributed just a $1 or $5 how much that can help all these foundations for what is needed. 

From the bottom of my heart ask for you to contribute to my Walk to End Epilepsy for 2012. I was diagnosed last November and am still learning to deal with having this condition, so it my family and friends. It affects everyone around me. So I can only imagine how others deal or handle it. I am very open with my epilepsy and how it's affected my life and I will continue to do so

Last April I put a team together for the Sharon Walk Ride Run 2012 for the Epilepsy Foundation of San Diego. We started with raising a goal of $500 and ended up raising a bit over $3500. It was remarkable and the most rewarding thing I have ever done. So Team Barton is doing another 5k in October at  the Rose Bowl and we are looking for support to reaching our goal of $3,000.00 My precious daughter alone has already raised $300 and is doing everything she can to continue. We are asking for more friends & Family to join our Team and by doing so, you will be allowed a page on the website to set a personal goal under Team Barton. By doing so this will allow us to widen our reach for contributions

If you would like to join our team or contribute, you can go to the following link: http://give.end-epilepsy.org/goto/TeamBarton



We thank you for your support and encouragement, and always remember as I do everyday, keep hope alive!!!


Note: Some of the information on this blog was from https://www.facebook.com/epilepsy.nation. They are a great resource, please check out their Facebook Page

Thursday, August 23, 2012

Today's a new day

So after everything that happened yesterday, I ended up having another gran mal seizure last night. The last thing I remember is sweet Emilee tucking me in as I went to bed.

I got up at 3:00am and started to get ready for work, and quickly realized that I am on leave. So I get to call EDD today and make some other phone calls. I get to call EDD at 8am and make an appointment to see my nuro to sign my LOA paperwork.

Going on leave is financially going to screw us again and now I don't know if we are gonna  be able to go on our trip to Arizona on Labor day weekend. :(

So I am working in my computer lab right  now and watching Netflix. I guess that's going to be how my days are for awhile. By the way, Piranha is a horrible movie!!!!

Today's a new day, so let's see what it brings! Today's a new day, so let's see what it brings!

Wednesday, August 22, 2012

LOA - What????

So this morning started out interesting. I get a phone call from our 3rd party vendor that handles my companies LOA's and FMLA's.

I was in the process of getting my FMLA paperwork finished and apparently they never received my 2nd fax and they called me to informed me me that my request for an FMLA request was denied.



As a result I have been placed on Medical Leave of Absence and have to have a bunch of paperwork filled out again. File with EDD, Call my HR Department  and get my short term disability information as well. I am gonna have to jump through hoops this next week to get all these files together and get them to my company and EDD filed asap cause we all know how long that takes.

So this I am hoping the time off will be a stress free and restful one so I can leave this on going storm behind me.

So between the new dosage of depakote and sleeping pills, we stii jowmtj

Tuesday, August 21, 2012

Local Business's Assistance Needed - Epilepsy Awareness


To whom it may concern, 


My name is Jonathan T Barton. Last November I was unfortunately diagnosed with Epilepsy at the age of 33. Since then I have been looking for support in Riverside/Jurupa Valley and have found next to nothing.  This was discouraging as I have been a member of this community for years now. I did find a foundation in LA & San Diego. But being someone that cannot drive with my disability, it’s been tough getting to places. I am a father of 3 wonderful children and have a loving spouse and together this has changed all our lives.

This why I am coming to you, last April I did a 5k walk for the San Diego Foundation and this October I am doing one for the LA Foundation. Riverside County doesn't have their own Epilepsy Foundation like San Diego or LA. In April my Team (Team Barton) raised a bit over $3500.00 and we are hoping the same if not more with the LA Chapter. 

So there are a couple reasons why I come to you. 

1) We are looking to start a permanent foundation in Riverside County. How awesome would that be if in your own time we could have this foundation for our local families who are looking & needing this support? We could also have booths setup at the event and will be happy to hand out flyers for your business.

2) Team Barton is looking for small/large local businesses to sponsor/pledge us to raise money to reach our goal of $3000. 

3) What a great way for Jurupa Valley to get involved in something so meaningful. 

When I was diagnosed, it took awhile to process and accepted that I will life with it forever. . My 12 year old daughter was the one that got me out of bed and told me that I need to stand up and do something about it. Well, since then that's what I have been doing and I am asking for your help/support in any way you can. 

Team Barton has a site you can go to and pledge us and our research more on the cause. I know that I will have to deal with this for the rest of my life, but today's children are tomorrow's future and the support we give them will only allow more open doors in tomorrow's future. 

Here is the link to our Team Barton for “The Walk to End Epilepsy 2012” at the Rose Bowl in October.



Team Barton asks for a small donation/contribution for this cause and look forward to bringing a Foundation to Inland Empire. A small donation will go so far with helping children with Epilepsy, Research for a cure and care. Any donation you do as a busniss is a tax right off and that information will be available.

Thank you so much for your time, This is something I am very passionate about and will do anything I can to help those with Epilepsy.

I look forward to hearing from you.

Sincerely,

Jon Barton – Jurupa Valley Liaison of Epilepsy Awareness
Phone: 951-847=8157
Email: Jonathantbarton@gmail.com
Blog: Epilepsy Found Me at 33: http://epilepsyfoundme.blogspot.com/





Sunday, August 19, 2012

Update - Intense Headache

Don't you hate it when you wake up abruptly thinking you overslept to find out you have only been asleep a couple hours and you have a horrible headache,

At least I have time to take something and go back to bed for about 5 hrs.

***********************************************************************************

Update, so I woke up late this morning and really out of it. I told Em that I was completely sore and she than told me that I had another Gran Mal seizure while I was asleep and that I had some petite ones while we were on the patio trying to relaxing and it was either me suddenly falling asleep or having a very small seizure. I don't remember any of this.

I have been having the hardest time sleeping and my nuro suggested I try over the counter stuff and that makes me feel hung over in the morning and only gives me like 2 hrs solid sleep and than it's back to a restless night.

So my primary prescribed me some meds to help me sleep. So I will try those tonight and see how these work. He prescribed me Dalmane (flurazepam) which is one that works well with someone on seizure meds. So we shall see huh!

 Wish me luck and good sleep!!!!

Saturday, August 18, 2012

Taking it easy...

So this week started out strong and than came to a point that all my energy was drained. One night this week I didn't sleep at all and went into work and had to leave after 4 hours. Later that day I ended uup having a seizure during lunch.

I slept for the rest of the afternoon, got up for dinner and than went back to bed. I woke up about 2am wide aware and really sore. I went to work and felt allot better.

Thursday I felt very fatigured again and felt as if I barely slept. I talked to my HR department and was sent home for the remainder of the day. While on the train home I had a small seizure and was pretty out of it. Again these are happening. I get so tired of the little sleep I get and I could tell it was starting to take it's toll on me. HR expressed that they would like to see my take sometime off just to relax and get some much needed rest.

I have been on my new dosage now for a couple weeks and it seems that my seirzures are starting to spread farther apart which is a good thing. I think my body is still getting used to them.

I can't believe how much energy Epiilepsy can take out of you both physically and mentally. I haven't been getting good sleep lately and even tonight is an example of that. It's 1:30am and I am wide awake even trying some sleeping pills my doctor recommended. I think it's time for a 2nd opinion. To get a different perspective on my Epilepsy and maybe a Nuro that specializes in Epilepsy. It never hurts to have a 2nd pair of eyes on things. Especially since it's been 8 1/2 months since I have been diagnosed.

My commute and long days away from home are starting to get to me big time.

Sunday we are going down to San Diego for the San Diego Epilepsy Foundation for a Beach luau and it should be allot of fun and a nice day to go down the beach. Here's the info below.



Not sure what we are are doing tomorrow. But since I am still up I was able to wipe 5 hard drives that I have been meaning to get done and do some work on my own laptop.

Well, I guess I should try to go to sleep. Have a great weekend everyone!!!!

Monday, August 13, 2012

Health Update

So it's been a whole since I posted an update. It's been an interesting last couple of weeks. 2 weeks ago my body hit rock bottom and I felt like I reverted backwards with my seizures. In a matter of 4 to 5 days I had about 7 or 8 seizures and my body rejected food and water. I lost about 10 pds in about a week.

I had gone to the ER to find out that I was dehydrated my seizure meds weren't being processed by my body. I went into a funk again and anyone that suffers from Epilespy probably can relate.



We went to my nuros for an appt to see what's going on. My doctor doubled my depakote and for 2 days after that I pretty much sleeper the whole time because I was so out of it. I went almost 5 days without eating.

After 5 days with the new meds I felt better than I have in months. I felt my energy come back. Since than I have only had to seizures and I am doing loads better.

I am truly learning to live day to day, as this affects me in so many different ways. Yesterday was a scary day as I learned to not swim alone anymore. So I was laying out in our mini pool(our spa we use as a pool during the summer) I was laying on a floating tying to get some sun and the next thing I know I am coming to as Em was trying to see if I was ok. We think I had a seizure while laying there. Sure glad Em came home when she did, cause I could have fell in and drowned. Note to self, never go swimming alone again. At least I got some sun and didn't get sun burned. Thanks Emmy for coming and checking on me. God knows how long I would have been out there If she hadn't come home. Thanks Emmy!

Photo Credit - Emilee Fox

May the storm always be behind me and not rain down on me!!

Over all, I am doing much better than I have in months but still have a ways to go. Thank you all for the continued support. Our family forever thanks you.

Walk to End Epilepsy 2012 - Team Barton needs your help!


Dear Friends,
Please join me by registering as a member of Team Barton at the Walk to End Epilepsy.
I am participating in the Epilepsy Foundation of Greater Los Angeles? annual Walk to End Epilepsy on Sunday, October 28, 2012 at the Rose Bowl in Pasadena because I have epilepsy and hope to have your support or have you there with me!
To join Team Barton you can go to: http://give.end-epilepsy.org/goto/TeamBarton
If you would like to sponsor me you can go to: http://give.end-epilepsy.org/goto/JonBarton
Seizures can strike suddenly and unexpectedly at any point in one?s life. Seizures steal moments and memories, can change lives, impact development, affect learning and can even result in early death.



About 360,000 Californians have epilepsy.
About 24,000 more will be diagnosed in 2012.
One could be you or someone you love.
For over fifty years, the Epilepsy Foundation of Greater Los Angeles has provided support to the nearly 160,000 individuals with epilepsy and their families in our region. The local Epilepsy Foundation chooses to fulfill its mission by leading the fight to END EPILEPSY and the burden of seizures by focusing on care, advocacy, research and education.
Your involvement helps support care, advocacy and education, today, while investing in research and hope for tomorrow.
Please join me and register as a member of Team Barton. If you are not able to join my team, please consider making a donation supporting my participation!! Ever little bit counts.
One Day At A Time,
Jon Barton, Captain of Team Barton