Thursday, May 31, 2012

Doctors Update

So yesterday I went to see both my primary doctor and nuro since last weekend I had 3 seizures and the last couple of weeks I am been pretty out of control with my body. Being tired and mentally drained.

I meet with my doctor and reviewed everything and that seemed ok with my meds I take. I than saw my nuro and after discussing my recent seizures it was decided that I will be taken off my Topamax and be put on Divalproex. But for the next 30 days I will be taking both since I just can't stop taking the ones I have been on.

It's obvious that the ones I have been on just aren't working as we need them to be and they also are causing my headaches I found out. My new meds will also allow me to sleep better as I can only take them at night per my doctor. They are alot stronger and make me drowsy. Last night was my first night taking them and boy did they make me relax. I woke up this morning and felt so refreshed. I am curious to see how they do tonight as well since today I have been go go go since I haven't felt tired at all.

So it's back to the drawing board basically, to start a new medication and see how this new one does. I know it it's all trial an error with these things as everyone is different, but all I can do is wait and see, and take one day at a time.


So back to work tomorrow and than it's the weekend. I spent a good couple of hours today on the computer going over my open enrollment packet and getting things registered and signed up. I hate that crap! Some of the plans are just so confusing. But at least for the most part I got everything signed up and just have to review a couple things and than submit it all tomorrow.

That's about all going on here. I still feel energized and didn't even get a nap in today. LOL. Crazy. Hope all is well.

Tuesday, May 29, 2012

Overwhelmed

So I haven't really posted a "Me" update lately and it's about time I do. This past weekend was supposed to be a relaxing 3 day Memorial day weekend which ended up turning into mentally and physically challenging weekend. I experienced 3 seizures within 48 hours. 1 on Saturday morning and 2 Sunday evening.

Saturday's was a harsh one causing me to have memory loss and not even recognize who Emilee was or remember that we had taken the boys out for a nice breakfast and to Target for some shopping. I still have bits and pieces that I am missing from that morning. It honestly broke my heart to know that I didn't recognize who Em was. I don't understand how this sick disease can do this to a human life and make someone go through this. I can't even imagine what someone with Alzheimerz goes through.

Sunday's was just Em and I talking outside on the patio and I went into one and when I came out she wasn't sitting across from me, she was holding me and within a minute or 2 I went back into another one.

I am just so dead tired, and exhausted which I believe is triggering them, but I can't be sure because I was doing pretty good for a while and the meds seemed to be working good and they were spreading apart and within the last 4 weeks each one I have had seems to get worse and worse. I don't mind the part of me having to deal with Epilepsy, I do however mind have to deal with having my family see me go through this and I just want and can't wait to get regulated and on a good routine and healthy one.

I have so much to do and this is hindering me from doing it for the time being with life and my commitments to my family, Work, Epilepsy Advocating, but most importantly, my peace of mind. Over the weekend it all caught up with me and emotionally I broke down to Emilee and confided in her how tough it's been and how I feel like I don't have control lately over anything. So after talking with HR and my manager today at work I am taking a few FMLA days (starting tomorrow) and going in tomorrow morning to see both my PCP and Neurologist back to back to have everything checked out. My full check up with my PCP to review all my medications, blood work, weight, everything. Then off to my nuro to discuss what's going on with my seizures.

So hopefully between the 2 there will be some answers and while I am off I will be available for any tests and some rest as my body is telling me I freaking need it. So that's what's been going on with me to be honest and open about it. Works been taking a toll on me with so much going on and changes with the new company merger, so the added stress hasn't been good either. But it is what it is.



We shall see what tomorrow holds and i will keep it to one day at a time right now. That's all I can do.

Sunday, May 27, 2012

New Fundraiser - Team Barton Epilepsy Awareness!

So I have started a new fundraiser for Epilepsy Awareness. The whole idea behind this one is I need help with Epilepsy Awareness. I need funds to get out in the community to be apart of community events and here are the things I need help with.

I need an Ez up tent, a decent size one, 2 tables and a few chairs, funds for getting literature together on Epilepsy and handouts. I need to also get some bracelets made up for handouts for donations and such. It's not gonna cost a lot, but it's stuff that I will constantly need while we go from event to event. We also are accepting donations of any of these items as well.

I set up a site for the fundraiser: http://www.giveforward.com/teambartonepilepsyawareness

Every little bit will help towards getting these items so we can maintain a presence and be visible in the community to spread the awareness.

If you would like to help in anyway, please let me know and email me at Jonathantbarton@gmail.com for further information.

My Captain's - Friends Forever within our own children


Through life you make friends all over the place and most of the time they come and they go. My experience being a father you interact with your children in ways you never do with your friends, so I thought until I had my boys.

In the last year my relationship with my boys Tyler and Jacob have become more than just the standard "Father Son" relationship. They have become my friends, but most importantly my little buddies. I come home from work and Tyler get's so pumped and say's "Yay daddy! My friend is home!". They get so excited to see my not just as their dad, but as their friend and companion and it's because our relationship is so great that they know I am always there for them. They look up to me and love me so much and I know there are times I take it for granted.

This morning Emilee shared this picture of my boys with me and it honestly took my breath away as I just see them growing up so fast miss a lot of time with due to work and my commute. But lately we have seen them grow so much together as brothers and friends that it melts my heart to see them together. I know they have the brother rivalry going on like normal brothers do, fighting, teasing and such, but I pray that they will grow into strong young me with a brotherly bond that they will hold onto forever. As these 2 are my little Captains in life. They are my little imaginors of life and creators of dreams and reminders of youth and I can only teach and instill in them to always respect and love another in life and to always believe in themselves.



 My little Captain Barton's bring out the best in me including Kaitlynn who has brought out a new passion in me for helping others and getting involved in the Epilepsy community in the last couple of months. My daughter is the reason why I set out to get involved in advocating for Epilepsy Awareness in Riverside and working with the Epilepsy Education Everywhere foundation and other groups I am now apart of. She believed in me so much, that it gave me the strength and courage to put myself out there to help others and I couldn't be happier doing it. I am so proud of how much she has grown up and how mature and passionate she is with supporting me and wanting to be apart of working with me and the foundation. She truly is a remarkable young woman.



I never knew that your own children could inspire you so much in life and renew your trust in this world and ambition to find a passion and faith to be better in life. Thank you my little ones, thank you for teaching daddy more than you will ever know. It's amazing when you set forth trying to teach your children and they end up teaching you so much. I am a very lucky and blessed father with 3 amazing kids. I love you Kaitlynn, Tyler and Jacob!

Saturday, May 26, 2012

Our Goal has been Reached and then some!!



I just decided to check the fundraiser page and was just blown again. Team Barton - Epilepsy Awareness has reached their final goal of $3500 as of this morning with 5 days left to spare. The Epilepsy-Foundation SanDiego is going to be so thrilled with this and I couldn't be prouder of my team and Emilee Fox and Kaitlynn Barton for their dedication and support to me. But most importantly I couldn't have done this without my friends, co workers, family who have been there since I started this and supported me. Thank you so much everyone for your help, your love and your continued prayers for me and my cousin Callie. Much love to you all and I hope you all have a blessed holiday weekend.

Special thanks to Allen Heinen, Meghan Kennedy, Mary Coleman Heinen, Jarrod Tosterud, Marlo Tosterud, Wes Hedges, Amber & Tim and to my Monarch HealthCare Family.




I can't wait to do this again for 2013 and get a bigger team together. This experience has been so rewarding for me and my family and has made me grow so much as an adult. Not only living and dealing with Epilepsy daily, it's growing on my to live to help others who live with it as well. God Bless you all.


Monday, May 21, 2012

Good News from an email I just received!!!! Ambassador of Purple

Good News from an email I just received!!!!

"Dear Jonathan,

Thank you for applying to the Ambassadors of Purple program and for sharing your story. We have reviewed your application and have selected you as a Purple Day Ambassador in the Riverside, CA region. I am certain your personal experiences and motivation to educate the public will make you a great advocate for Purple Day. 

I found your blog the other day and would like to commend you on sharing your epilepsy journey with the world. You will notice we've added it to our Media page in the Blogs section at  http://purpleday.org/media.php  as well. We hope you will be able to continue spreading the word and help us promote awareness of epilepsy and Purple Day in your region.

We are always looking to get local schools and businesses involved by wearing purple on March 26th. In addition, we would love for you to promote Purple Day in any other ways you'd like. For event ideas, please visit  http://purpleday.org/ideas.php.

We'd also be happy to connect you by email with other Ambassadors in your region (Riverside / Inland Empire). Please let me know if you would like me to connect you.

Thank you for supporting Purple Day. We look forward to working with you!
Best Regards,

Michelle Caplan

Partnership Executive
Purple Day
www.purpleday.org"

So excited and thankful right now!!!! 

Thursday, May 17, 2012

Epilepsy Foundation - Only 15 days Left



FYI - To date Team Barton has raised $3000!!!!! and have only 14 days left to raise money for the Epilepsy Foundation of San Diego! We have come so far and I never dreamed we would have raised so much! But wanted to go till the end!!!

We have 14 days to hit $3200! I believe we can do it!!!!!!!!


This whole experience has not only been rewarding, but since I have Epilepsy, I have received so much Support and found so many new friends and contacts. It’s truly been an amazing adventure!

Thank you for your continued support!

Tuesday, May 8, 2012

Raising the bar!!


So excited!!!! As of today we have raised $2825 for the Sharon Walk.Run Ride 2012 out of San Diego Epilepsy Foundation

Team Barton is still taking donations for the Epilepsy Foundation. Every little bit counts.  We have till May 31st. Please share with your friends and family on your Facebook pages and other social sites to spread awareness and to help us raise money till May 31st.

 Thank you all for your continued support.

You can go to our Team page to donate at Team Barton - Donation Page


Sunday, May 6, 2012

Great News - Epilepsy Education Everywhere


I got some great news yesterday in my quest to get Epilepsy Awareness out in the IE. I meet Meghan Kennedy for Coffee yesterday to go over ideas for spreading Epilepsy Awareness to the IE and discussed some really great ideas. During the conversation I was asked to join Epilepsy Education Everywhere to be the Jurupa Valley Liaison and gladly accepted. We have the same goal to bring a foundation to Inland Empire for Epilepsy and I couldn't be more excited right now about joining this wonderful team. Please check out their Facebook site or website below. Epilepsy Education Everywhere (EEE) is a nonprofit corporation focusing on raising epilepsy awareness and education among the general public. I cannot wait to see what the future holds!!! I am so happy about this!!!


Epilepsy Education Everywhere Facebook Page

EEE Website


This is a picture of Meghan Kennedy and I from yesterday. She is the founder and CEO of EEE. Such a wonderful person I meet along my path of Epilepsy and becoming a great friend and inspiration. I am very lucky to have meet her.

I am feeling so blessed right now along my path and my daughter couldn't be prouder of me right now. She is   my inspiration for all of this as she was the one that told me that I am the one that needs to get out there and do it and bring the awareness to Riverside. Bless her little heart for believing in me so much. And to Emilee as well for standing by my side. I love you both so much! I wouldn't be who I am without both you wonderful ladies in my life!

Saturday, May 5, 2012

Ambassador for Purple Day Application Submitted!



So I just applied to be an Ambassador for Purple Day on the website http://www.purpleday.org/ since there isn't any group for Inland Empire that exists. I was asked to write something in 250 words or less and this was what I wrote.


"My name is Jonny Barton and I was recently diagnosed in November 2011 with Epilepsy and as hard as it was and still is to deal and accept it, I haven't let Epilepsy take over me, I am still in control and have a great desire to spread Epilepsy awareness. I recently did the Sharon's Walk.Run.Ride in San Diego with Team Barton raising just under $3000 for my first event ever with a team of 5 people and it was such a rewarding experience. I live in Riverside County California which has very little support for Epilepsy and I promised myself that I would do whatever I could to bring the awareness into my local community and so far I have made great strides in the right direction. I am not shy and I love to speak openly with people about how I am affected by my Epilepsy and even started a blog titled "Epilepsy Found me at 33" http://epilepsyfoundme.blogspot.com/


I simple want others to know that they have support and not feel neglected or alone, and my goal is to accomplish awareness to all communities within Riverside/Inland Empire.  


Thank you for your time.


Jonathan T Barton"


So if I get picked for this, it will allow me access to more opportunities to promote Epilepsy Awareness and hold events for it. I am very excited and can't wait to hear back! 








Friday, May 4, 2012

Please read and share!! Remember - Together We Can Do It!!!!


We just hit $2600 on the Team Barton site!!!!!!!




 We just hit 5 times our original goal and then some. We have till May 31st so Team Barton is just gonna continue to go for all we can till they take the website down!

We set a new goal of $3200 and we think it's possible.  We have been blessed with so many contributors and can't thank you enough for the support. Please help if you can spare a few bucks or share this with your friends and family. Just think, if we can get 35 more people to donate $20 each, we can reach this goal. So tell all your friends, family's, post this on your Facebook pages, websites, blogs, Break/Lunch rooms, and word of mouth, and before you know it, BAM, your not only contributing, your also spreading Epilepsy Awareness.






Thursday, May 3, 2012

Harder than I thought it would be......Quitting Smoking!

So going "Cold Turkey" has been harder than I thought it would be and with this week I have had had some weak moments and admit to it openly. Quitting smoking is hard for me. I decided to seek some assistance from my doctor today.

So after talking to my Dr it's been decided for my to go on Chantix for a month to help me quit smoking.






 This will help me lose my cravings big time according to my doctor and that's exactly what I need right now, especially with my stress level. He said this would be better for me than the patch due to my blood pressure and will be ok to take with my other medications.


 Doesn't hurt to try it since its harder to quit than I thought it would be. Never hurts to ask for a little help sometimes! So starting tomorrow morning is when I start this new pill. Wish me luck! Good night. :)

Wednesday, May 2, 2012

Feeling Different Again



So yesterday was a bit tough on me again. This time I was able to recognize the signs of a seizure coming on and get myself to calm down and in a comfortable relaxed area away from work and had Emilee come and get me to go home and rest. I took my meds when I got home and passed out for about 5 hours. Woke up feeling groggy but allot better.

Still waiting for the right combo of meds to mix in due time to take control and take over these things and I will than hopefully be ok.

My daughter did her first VLOG for the Team Barton page on Facebook and I have to tell you that I am very proud of her. She was the whole inspiration of Team Barton and I am so excited to have her support and see how excited she is about getting more involved for next years event.

You can see the video on K's Vlog on Epilepsy and Team Barton

We are still doing the fundraiser for the San Diego Walk Run Ride, we have 30 day's left have have raised $2165 towards our $2500 goal. If you would like to contribute, feel free to go to the page Team Barton

Any little bit count, from a couple of bucks to $20. Whatever you can spare. If you break a $20 in the next few days, take the ones you get back and pledge to donate. We appreciate everyone' involvement and support, it's been so much fun and rewarding.

Hmmm, what else is going on, looking forward to the weekend to spend time with my kids. This week has been kinda weird with all kinds of things, work, life, family life. Found out recently my folks split up. Haven't really talked to them in years and now I am being probed and given the 3rd degree on how I heard about it. Jeez, They don't talk to me ever, but I hear something I thought was a rumor and find out was true and it's like bam, who when where why. That whole issue could be it's own blog but I don't have enough time in the day to write about that. It is what it is and It did concern me when I heard about it and I am being told I am a liar. Oh well.

Wow, it's almost time to leave work! Sweet! Another day in the week down! In a good way.



Tuesday, May 1, 2012

30 days to reach $2500!!!

All, 



Can you spare $5.00 to donate to Team Barton to help us reach our $2500 goal to raise money for the Epilepsy Foundation of San Diego! We are currently at $2140!! 

If you can, go to the link below to sponsor us. We have 30 more days to reach this goal. Thank you for your support!!! Please share this on your pages social media pages, passing this along helps spread the awareness. Team Barton is asking for your help. 

http://sharonsride2012.kintera.org/faf/search/searchTeamPart.asp?ievent=489577&lis=1&kntae489577=FC141D7E54F449ACA2FF095EFB454A6C&supId=0&team=5030757&cj=Y


This experience has been a wonderful experience and I can't believe how much support we have received  from everyone and hope to keep it going. If you would like to get involved, please let me know by emailing me at Jonathantbarton@gmail.com.

If you can't pay online due to issues with the site, you can send your donation to my Paypal at RevJonnyTattoo@yahoo.com like others have done and I can post it for you. 

We appreciate your help in any way. Even sparing $5.00 can go along way. 

Thank you


-Team Barton-

I dropped a tear in the ocean. The day it's found is the day I will give up

So today I came home from work since I felt a seizure coming on and Emilee came and picked me up. Horrible headache and slurring of my speech so I got in bed and took my beds and slept for about 5 hours. I woke up feeling allot better, but still kinda groggy. I am really trying to keep my stress level down but it's really hard with work right now. Allot going on right now that's got me stressed out.

While Em was making dinner, she handed me a box and said "Happy Anniversary" and I opened it to find a 8x10 picture of this.


She had taken several pictures since I was diagnosed with Epilepsy and put them together to make this photo for me with the following quote "I dropped a tear in the ocean. The day it's found is the day I will give up."  I couldn't help from instantly tearing up with happy tears and thanking her.

What a terrific gift and it means so much to me that she took the time to do that for me.  Along with that picture there are 2 magnet pictures and some smaller ones for me to use as thank you ones for my team mates from the 5k we did. It's so thought full and very creative. I love that about her and so much more. 8 years now we have been together and I couldn't be happier.

I love you babe! Happy Anniversary! Thank you for helping me get through all of this. You're an angel that I get to grow old with.