9.03.2014

Jen's battle with Epilepsy

Today I want to tell you about my friend Jen and her struggle with epilepsy, Jen is one of my role models and one of the best christians I know, she is all about Jesus and her love for him shines thru her very move, I first "met" Jen when I started blogging and we became online friends, some day I am hoping to meet her and to give her the biggest hug she has ever gotten.  Without further ado here is Jen 


Tell me a little about you and your husband: My husband Ryan & I met in highschool but didn't start dating till 4 years later. Missions is what drew us together as we both took off a year after highschool. I went into YWAM & he did a love missions program similar to that in PA where we both are from. I was drawn to Ryan's heart for The Lord...and of course the fact that he is tall, dark & handsome. We both love traveling & trying different ethnic foods. We also share a love for the beach and having weekly date nights. He just finished getting 2 Master's degrees at Fuller Theological Seminary (MA in Theology & MA in Intercultural Studies). We've been living on campus in Pasadena, CA for the past 20 months after selling our house in PA to fulfill his dream of finishing school. It hasn't been a huge sacrifice as we both love the warm weather and the beauty of CA. We are in a place of great discernment as Ryan looks for a job. I loved being a MRI Technologist for 10 years before unfortunately getting on disability 2 years ago.
How long have you suffered with epilepsy? 11 months into marriage I got diagnosed with Epilepsy after having a grand mal seizure which left me unconscious & was taken to the ER by ambulance. I was in & out of the hospital for lots of testing and then following up with a Neurologist who tried all kinds of seizure drugs that I ended up being allergic to. After seeing the best Drs from coast to coast (literally), I am on 4 seizure drugs that are helping to control the seizures somewhat. I still have mini seizures (Simple partial seizures ) in my sleep every night that disrupt me ever getting into REM sleep. I have to take naps during the day because of being so tired. I also haven't been able to drive for the past 2 years. Epilepsy also affects you mentally because you never know when a seizure may strike. Fear & anxiety are something I battle as well as depression as it has been 8 years of living with Epilepsy.
How has it affected your marriage Epilepsy has affected our marriage. We plan everything around meds, napping & going to bed. It is vital to take my morning, afternoon & evening drugs at the same time every day. I also need to be eating regularly & never skip meals. I used to love having my schedule full as Ryan & I are extroverts & love people. Our lives have had to majorly slow down and at times we joke we feel we are in a nursing home. Traveling which we love is now hard~ especially with the different time differences. We would also love a family but the Drs say it is impossible because my one seizure drugs acts like a contraceptive. I feel guilty at times for this major desire & that I'm holding Ryan back from his love for adventure & going out...even though he always reminds me that we are in this together.
Tell me about your brain surgery? After over 2 years into marriage and trying failing drug after drug, we decided to try brain surgery after lots of prayer. I spent a month at Thomas Jefferson Hospital tied down to a bed with Ryan by my side (work allowed him to take off). They had me hooked up to EEG & video monitoring 24/7. The surgery lasted 6 hours as they took the damaged tissue that was sparking the seizures in my brain out. After having a right frontal lobe resection, which could have resulted in loss of speech/talking, I am a walking talking miracle today! Unfortunately, the surgery only helped for 2 months and then all the seizures returned. I had at least one big seizure a month (Grand Mal seizure) which would include violent convulsions, loss of consciousness, bladder & bowels. I wouldn't remember any of them and at one occasion didn't know who Ryan was. Such a loss of control, pride & super scary.

What are the misconceptions about Epilepsy? A misconception of Epilepsy is that it is just a once and done event. Reality, there are over 20 different kinds of seizures. Every seizure causes some memory loss and is not good for the brain no matter how big or small they are. You literally have to take one day at a time & it's hard to plan for the future.
One thing I wish people would understand about this mystery disease is how much of your life truly is affected by it but there is so much more to me than being labeled as an "Epileptic." I don't want people to be afraid to hang out with me because of having seizures. I want people to look beyond the disability & see a person who loves people & who is a big dreamer.
Do you feel epilepsy has changed your life? I can definitely say Epilepsy has changed my life for the better. I always had compassion but that has even increased to a whole new level. It has laid a strong foundation for our marriage as vows were put to the test so early on. I truly feel we have a deep love that has been tested by fire that no one can take away from us. Ryan would say he has become more selfless as he has had to not only be a spouse but a caretaker. He has served me & taken care of me so well. I truly feel he is the physical hands and feet of Jesus. Considering me above himself and his desires. We have had to depend on God to a whole new level as well. We have seen his faithfulness time & time again which has only made us love him more. He is the only thing that doesn't change when everything rocked our world on Dec 2, 2006. He truly is close to the broken hearted. Even though I'm still having seizures I believe he is working all things out for our good and for his purpose (Rom 8:28).



Thank you so much Jen for sharing with us here today, if you would like to donate to Jen and Ryan as her hospital visits are costly off course- or just send them a Starbucks card which they love yet don't always get to enjoy when your a student- you can send me an email and I will fix ya up with the information.

17 comments

  1. A great insight into what it is like to live with Epilepsy. I wish you the best of luck Jen!

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  2. Wow! I didn't know that Epilepsy was so difficult to live with and that there were so many different kinds of seizures. All my best to Jen who, by the way, looks gorgeous in the picture with the hair really short (she looks gorgeous in all of them, but this one is awesome)

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  3. That was a beautiful story. I can relate so much to her story, thank for sharing.

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  4. Seizures are so scary. Your friend sounds so brave!

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  5. I never realized how complex epilepsy really is! I can't imagine having to plan my entire days around this...Kudos to her for having such a positive attitude and for sharing her story ;-)

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  6. It was good to learn more about such a serious issue. I love how she takes a positive look on it and how she is smiling in her pictures. I can see her love for the Lord is getting her through it.

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  7. Hi Terri Lynn! I admire Jen's strength in her battle with this disease. My hubby also has seizures but it is triggered by hypoxia due to a weak aortic valve. (He will be having surgery once he is strong enough). Please to check my page, I am a GiveForward ambassador. This charitable group helps raise funds towards medical expenses. You can recommend Jen to be a beneficiary. Here's a brief description of GiveForward and you can read about the stories about the people who they have helped. - http://www.bornadragon.com/2014/06/help-change-someones-life-today-and.html. Once you are on my page, there is a GiveForward logo on the right sidebar. Click on it to take you to their home page. I will not earn any compensation for this, trust me. I am happy to be able to reach out and inform you that "all you need to do is ASK."

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  8. A beautiful story, best of luck, Jen!

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  9. Thank you for sharing! I learned a lot

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  10. Wow. thanks for this intimate glimpse into this disease. Thinking of Jen, her family and praying for the best. xx

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  11. What a great story, epilepsy isn't easy to live with.

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  12. So touching! Epilepsy is really tough and painful...Hugs to Jen and will pray for her <3

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  13. Thanks for sharing this enlightening post Terri Lynn. I didn't realize there were so many different types of seizures and they all contribute to memory loss. Obviously, Ryan and Jen have a great love and commitment to each other. I wish them all the best in their life together. :) <3

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  14. such a misunderstood disease isn't it. Very, very touching story

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  15. What an amazing attitude to have, I'm really touched and impressed. What a great message too, to share just through your attitude alone!

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  16. What an amazing story! I had a close friend in high school who had epilepsy. One day she had a seizure right in front of me and fell down the stairs. It was so scary!

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