Pain Isn't Pleasure

Arrival from AZ docs

Misery or Joy? I finally got every little-->to HUGE tests you could imagine. Many that even hurt. So that I could find out why my whole body, my joints and in between KILLED.

We went thru it, 10 days hospitalized for it. Month and a half later with it not calming at all, but worsening, I went BACK to my hospital in Phoenix (Mayo) to shove the rest of the testing in to finally make more sense.

Then I watched myself for months go thru memory pullbacks, snappiness, extreme emotional wheel from having to deal with being "well" after my 3rd brain surgery, for basically 2 great weeks-then this all began to hit. I was stuck on my "why God's" and "perhaps He just dropped me from His list, perhaps I will His to...." but there is no answer in that. Everyone down to my amazing, precious brother could tell me that-and I had prayed for years for Him to finally except Him. Didn't realize God formed THIS type of pain to draw amazing souls like my brother. That is what got me to step back and see it from a different spectrum. We all step into our life figuring out our timing during certain trials to bring people to Jesus-when in reality-that could have zero to do with it, or be a step, but not the final call for someone to accept Him. It takes others things after--it takes His timing His plan. Not ours. So with knowing that with such a quick slap of reality--I realize pain can be pleasure when you see what this chaos can do.

I am now on Cymbalta, and a pain patch to slowly come off of next week, and a pain med to go onto. I get about 2, sometimes 3 days going good-then down for at least 7-10. I have it at an extreme case right now still. So it will take time, learning more, and adjusting to it all-with fall backs. As for this isn't a ME life. Being so slow, not active. I am one who flies all over, have fun-reach out, gifts for family, Bible studies.... but now I have to juggle all on what I CAN DO, and for how long. Just amazes me. Feels like I aged quick. Sure am thankful this all happened before my friend Jason Mitchener passed away. I visited him so often in his tight, permanent nurse room for all his illnesses. As for he had a very silent life-unable to go anywhere except one special thing-planned way ahead, once a year. So I am thankful I was useful then, when I could drive, my body didn't kill me. Jesus does work wonders. 

God bless you all. Know He has reason and love for you.

The pain isn't pleasure today-but when you know you've done good for others elsewhere-then you know you are blessed thru it all.

In His Love,

Heather

Finally cure epilepsy-now what

Fibro WHAT???

Seizure Free now--but severe pain?

How long? Week, month, year...forever?

I'd rather have my seizures back....

Epilepsy my whole life-just out of control when I had my child..she still loved me so much.

My 3rd brain surgery was done awake-so they got almost ALL---my brain is now confused.

Alive

I can gratefully thank Jesus for having more and more plans for me... as for He is why I am still alive today.
I have encountered so much in life, more than a regular, now 33 year would have. Most people when they hear what I've been going thru medically, they instantly think I am in my late 40's, early 50's. Then with everything else in life as well, both all in my own hands, and in others-I do look ancient. But I AM so thankful I am alive.
They are amazing stories to be able to share. Not dwell upon. My biggest one will always be, to me, how my ex beat me right after my first brain surgery-but had he not, I never would have went running looking for Jesus during all the following chaos in my life. I wouldn't have been popping so many of my Phenobarbital-even while searching for Jesus and jamming hard to what is known as popular Christian music-blasted and screaming it at the top of my lungs driving. Yet, I really was trying to find Jesus-just in a really hurt, and confused way. Numbing that pain of my ex beating me, confusion on what to do with my 1 1/2 year old, life, support, and epilepsy-now addiction. It took my overdosing, near death... to realize there is MORE to life. To ask HIM for help. Give my life to HIM to guide.
All of my brain surgeries will always be amazing in my heart-but the topper was this third and LAST one this past February. It was just amazing. The world whom people I didn't even know were praying. People I barely knew were sending cards, gifts, calling, texting, messaging on Facebook and twitter. Will never be forgotten. God works miracles. Then to have been the amazing-AWAKE brain surgery. Now my neurosurgeon knew, I was one in a million that would go for it, and be right for it. Granted, it took three times for him to realize I was that laid back... but it was very much worth it. And it was amazing to live thru-be awake for, to remember.
Now with having epilepsy, for some odd reason I have been so called "blessed" with the craziest, some times really creepy very long term memory- that I sometimes would like to go in for a fourth brain surgery to have taken out. It isn't just a "thought" it is real--it is true memories-both good and bad- that a remember ALL THE TIME. They just are confirmed by people with normal brain, who are shocked that it comes so easy to me-in full remembrance, when they really have to search their memory logs....which is normal. May sound blissful, can be very aggravating in time!
And with all the times I was living on the edge, I was realizing that I was being "talked" to the whole time by our Lord and Savior-Jesus Christ. Would kindly tap me on the shoulders when doing so wrong. Allow my car to, yes, flip 3 times down a freeway-off to see this guy who kept following me in my life everywhere, to continue a relationship that never should have started.... I was leaving my ex at that time for cheating on me, yes, but hadn't yet completely. And he introduced himself for weeks as "single" .. even change the look of "his" home--until she rolled back into town--then he gave me a low down. And how first he was going to divorce her-then in time showed he was never. And I saw why-she had the perfect job for him. And that was sad. God made sure I didn't get up there when he located me in San Diego-to "tell him, at just lunch, no more visits" cause God knew his plans. And God was right. I called with whiplash-and a completely totaled Tercel-from rolling it 3 times down the 78 freeway. And he was angry I was not making it-as for he thought-even with my prewarning-we'd be making love in the hotel he reserved.
It is times like this that shock-but amaze me. And I sit here today loved by God, and seizure free-from walking close with Him. His plans are in HIS TIME, and are amazing. I have lived so many places where memories stick-and with epilepsy, I love, and connect with music. I used to seize with music at certain times-I no longer do!!! But I will always have deep memories of where I was, what year, what was going on-to all music of all type. And sadly to say-because I love so much music, after my ex beat me, I can recall so many songs that I overdosed to, and so many that I even recall bawling right after he beat me-crying down Killeen's roads I could barely see. The one down side to music, and memory.
Where memory can just be frightening. I am glad I remember all my friends-it just is amazing I remember ever detail of it too-3 times less brain. Kind of gets spooky.


Blessings to you all!!


Heather J Siebens

1 Corinthians 2: 9
"No eye has seen, no ear has heard,
     and no mind has imagined
what God has prepared
     for those who love Him."
1 John 5: 14
And we can be confident that He will listen to us whenever we ask Him for anything in HIS WILL

Healing Steps

Amen!!!


Tory's 9th birthday was such a blessing!!! Yes, she got the great gifts she loves... got the amazing family from mom and dad and uncle to her cousins and aunt she loves dearly!! She got all that love she adores-and was able to return it!! She is such a precious jewel from our true gift-Jesus Christ. He blessed us big time with such a precious soul like Tory.
I felt deep emotions for the first time in a long time. I just had to figure them out. The first were elated "happy" tears-that I was so well for THIS birthday for Tory. I've always put together good birthday's and great history of them all. But this was the FIRST since her birth I was seizure free-very well for. That grabbed tears of joy, as I took the pictures I had taken and made music videos. Her smiles were so amazing.
Then came tears of loss. Loss of time. Loss of what I would have done over the years had I been more "well." This struck me because I was going on a field trip with Tory. We had been counting down days. Yet the night before, Tory had the "if I can go" statement. And that shook me. Who told her I wasn't going? Did she not want me there? So I asked her why she still wondered if I'd make it. And it was because of how sick I have been over the years-not able to do as much, or always follow thru. My heart sank. She was so sweet about it. Just making sure I feel good and my head doesn't hurt bad from surgery. But THIS IS MY KID. I love she loves me like that. But she shouldn't worry if I am going now. I am well-and will strive to make it all. We just hugged and talked about the prior years. I let her know Jesus has His arms always wrapped around us.... and if anything changes, she is sure one strong kid with an amazing heart thru Christ. But give any worries to HIM and talk to me!!!!  :)  It was a great field trip after that.
It is amazing what having a long term illness can do to how other people live. It is something when is healed, that has to be talked about-on how all are feeling about it now. Big change both ways.
She is such a doll. But is also amazing what is in their thoughts-which is why Jesus likes us to pray. To love-to yoke-to bring up-and to LISTEN.
Sometimes can be hard to listen to your 9 year old when you already have your directions in mind. But we sure need to.
Love you all....


In His Grip,


Heather


@AliveinMe @EpilepsyCures

All Smiles

I had an amazing appointment with my awesome neurologist Dr. Joseph F. Drazkowski at Mayo Hospital here in Phoenix, AZ. I was able to walk in with such cheer and smiles… which comforted HIM BIG-after we hugged he was able to sit down in relief!! Relief of no seizures this time!! No awful side effects or loss of sight or memory etc. It is honestly amazing how much the doctors heart truly is in it for the patients as well-which we always need to remember. I have seen this awesome neurologist for over 8 years, been thru so many “answers” together, that didn’t fall thru-yet we kept pushing forward, as Drazkowski knew we’d find an answer! He always had great positivity, and I am ever so grateful!!

We were able to share stories of what was going on in the eight weeks of recovery for me. What all I was doing. How quick I recovered. How exciting this is. Compared it to the 2 prior resections, in amazement!! We shared time with family during holidays- (which is always a fun story!!) He loves to see if I do make it thru family SEIZURE FREE!! We all know that can be stressful!!! I sure do!! It was great talks of past times I was so thankful for- Jesus guiding me to call him the night I overdosed so much I shouldn’t be here. He very much took care of that. This is one neurologist that truly never gives up on anything. Which is why when Obamacare begins to light up, and will show any change in seeing him, or his pay-anything… my blood begins to boil!!

So to end our talk about that… Obamacare-and how all the docs at Mayo would like him to kindly change his mind and focus on happiness of foreign countries or getting oil prices back down, whatever… he had to show me one of the new annoying implemented papers for it…. AT EVERY APPOINTMENT I am supposed to sign this paper that yaps about how many times the doc washed his hands-TWICE, answered questions, had on jacket- etc…. etc.. Even have a nurse that scopes the floors to interrupt and ask herself to double-check, like a cold call. Just thought this was ridiculous! People know how to call Patient Care, and my neurologist took care of me with one complaint I had about the doc prior him one time two years ago!! This is childish.

I have grown up… haven’t you? More paper, more trees, more trash. God only knows what this will do with the Obamacare even more.

Either which way, without it fully in control, last Tuesday, I had a marvelous follow-up with my neurologist Dr. Drazkowksi, who means the world in neurology, psychology, and care to me. I will not gamble that!! The White House looks like they need repetitive letters!!

Blessings all!! Pray you all are well!! Those who aren’t– Mayo is amazing!!!

In His Love,

Heather Siebens  @AliveinMe  @EpilepsyCures

http://www.twitter.com/AliveinMe

http://www.twitter.com/EpilepsyCures

http://www.youtube.com/Hetty4Christ

http://hiswill4me.blogspot.com

http://manyepilepsycures.blogspot.com

http://www.causes.com/epilepsycures

CHEERS!!

TO ALL!!
But Praise Jesus the most!!

1 Corinthians 10:31 So whether you eat or drink, or whatever you do, do all to the GLORY OF GOD!

Whether lying in the hospital bed-with wires in your brain, or at home having seizures, or medicated to exhaustion, or thru 3rd AWAKE brain surgery-with success thru Christ-- I do everything for HIS GLORY. Use the tough times--seeing His Light! Reaching out to others-knowing HE HAS PLANS FOR ME, FOR YOU!! And not to dwell on the hard times, but to be thankful-excited-knowing His plans, whether seizure free to come or not-have a positive outcome for myself-you-many!! ALL FOR HIM IS THE BEST PART-- as we lean on Him with Trust!!!!!
So no matter what we are doing in our day-- do it for His Glory. What the outcomes are-just surpass our understanding of How Marvelous, and Wonderful HE ALWAYS IS-- as we seek to see that, every moment, every purpose. He loves you, even thru the struggles, to take this thorn, and turn it into something amazing that will change lives! It is just TRUST. The moment I found Him, and surrendered all my control.. and gave HIM ALL MY TRUST... He took it all full force- His way- His timing... and years go by... brain surgeries go by... and finally- the MOST AMAZING -- AWAKE BRAIN SURGERY WAS DONE!!!! And I AM EVER SO GRATEFUL!! As for I haven't felt so alive since I was 22!! I may have a headache-- but He blessed me with an early appointment today--to get my staples OUT-- AMEN!! 
I will continue to praise Him and share His amazing way-- of guiding me down this path to wellness- with AMAZING DOCTORS AND NURSES AND STAFF-- AT MAYO HOSPITAL HERE IN PHOENIX, AZ... THAT DON'T QUIT!!! EVER!!! FAITH!!
Blessings to you all!!! Live for His Glory!! 
Cheers to that!


In His Love and Grace,
Heather  @AliveinMe @EpilepsyCures

Hebrews 9:28 so Christ, having been offered once to bear sins of MANY, will appear a second time, not to deal with sin but to save those who are eagerly waiting for HIM.

Seizure FREE

Who out there has been praying--asking--begging to be seizure free? Whether several months, years, decades... I know so many. I sure have been one of them. 
I was born with epilepsy basically. Five months old was the first, one year old was the medicated time forward. All my childhood, they were NEVER controlled. But they were a type that had a HUGE aura, warning, to tell me when to be in a safe place. As a child who is busy, living on the edge, that was a blessing from God. They were under control completely for the first time when I was 17-22. Then about 22, due to stress in my first marriage, my seizures began to change some--from atypical absence seizures--to complex partial seizures. And then I got pregnant...and they really hit a doozy. Talk about worsening. BUT ALL FOR AN AMAZING GIFT...my child Tory...never would I change a thing.
Thru all that, and a rough marriage, led to multiple brain resections. For that I am ever grateful. I learned the hard way how to find Jesus after my first brain surgery...worth every bit of suffering to find out THE REASON WE ARE HERE! Then, when found Him.. struggled thru addictions to numb pain--until I REALLY REALIZED it was to give ALL TO HIM... HE HAS ALL PLANS... that was when all things began to unfold for good!! In hard times, HE BROUGHT GREAT RESULTS...with trust and patience!! And I am forever grateful.
I was able to reach out help others thru my tough times, and learning. I was able to keep my light burning bright FOR HIM--thru ALL CIRCUMSTANCES... knowing He has awesome plans for you thru ALL-- ALL... just hold on tight with TRUST.. love Him and be obedient! HE HAS MORE TO COME!
And with all our stuff we touch peoples lives... some we know, some we don't. We help bring others to our Lord and Savior. We help others turn back to Him. We have others begin to wonder!! Planting of the Seed! We shouldn't dwell on tough times...be glad! As for He has plans for it all-- for HIS GLORY!! Be honored!!
My 3rd brain surgery just amazed me!! The surgery didn't. How HE watched and guided the surgeons, had everyone praying, kept everyone calm...HE AMAZED ME!!! Awake brain surgery. Only Christ could have someone be like me... so CALM and excited to be awake during brain surgery. He just amazed me... and I am sure ASTOUNDED my neurosurgeon, for me being so laid back and calm!! He is one amazing God.. why worry!!??
Know... He was and is there every step of the way. I KNOW THIS FACE TO FACE FOR IT ALL... AND DURING AWAKE BRAIN SURGERY!!! As I sit here typing seizure free still... I am twice as grateful. He just amazes me more and more every day... but I do know, prayers never stop. And I am here for answers, and prayers for all. Know that... @AliveinMe and @EpilepsyCures As for I am forever grateful!


Blessings... know HE IS WITH YOU, ALWAYS!


In His Grip,


Heather


Isaiah 58:11 The LORD will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.

New Beginning...

Our precious gifts from God

aren't too tough to be told;

they are gifts from Dear Jesus

His dear love cannot be sold.

How thankful to Christ you are 

living day by day here for Him.

Thru His light in our blessed life

Sharing with all, I WILL NOT GROW DIM!

That is just so true. I love my kiddo Tory so much. I am amazed and astounded at how much this kiddo can take at such a young age. Which time? When we had to leave my ex the first time when she was 3 mos old, from lack of care? When she saw me go thru my first brain surgery at 1? When she saw that my ex tried to be part of our life again, until he beat me when she was 1 1/2? Or all the overdosing and seizures and hospitalization on those that followed? She saw my 2nd brain surgery at 3 1/2... my surgery to take the screws out at almost 5... and this surgery-- the intense AWAKE-- gone over 2 weeks hospitalization-- she is almost 9 for it. 

She was nervous that first day I was gone. She was tired. Didn't have me putting her in bed. Worn from all the places she had to go. Overall-just wanted a MOM hug, one that proved she is ALIVE... even if she has deep wires in her brain. I asked my precious hubby to please brain her up... and during all the worry time away from me... she did her usual... she got hives all over her body. So the trip up here to see me-calmed that down the rest of the time. She made several frequent visits-and was a-ok!! I know what it is like having her in the hospital-- I just don't leave. That is so tough. She and I always "argue" who loves the other "more." She has such an unbelievable heart. One that only parents can have very tiny to do with- the rest is all Jesus! And I praise Him for that!!

She would come up and love to feed me-like pay back of all the times I'd do it for her!! She has a heart beyond any I have really come across at this age, constantly. She isn't perfect.. but she is darn close when it comes to how much we are to love all, at all times with our heart. And I am so proud of her.

This little one has a controlled case of absence seizures. I am blessed controlled. Therefore she has a larger chance to outgrow them - than most. I pray she does. If not-I just pray she uses it all FOR HIS GLORY-- the way mine turned out. It has taught me the wondrous ways Christ works in our lives--great times, and very much tough times. His timing and plans are perfect. That is where I say, in all circumstances, praise Him, knowing-HE HAS HIS ANSWER, HIS PLANS... and with trust, love, obedience... they will unfold!

I Love you all-- you all were such sunlight, even on tough days-- and you always remain sunlight- in my life everyday. My head hurts-- and my shaven part is quite deep this time-- but all for HIS GLORY-- not mine! I truly praise Him for every step... and every doc He guided me to. I feel so blessed... I am just here to share!

God bless you all!! Thank you for your warm heart and care!

In His Love,

Heather (Hetty) Siebens  @AliveinMe @EpilepsyCures

http://www.causes.com/epilepsycures

http://epilepsycures.ning.com

1 Peter 5: 6-7
So humble yourselves under the mighty power of God, and in His good time He will honor you. Give ALL your worries and cares to God, for He cares about what happens to you!!

Heather's Epilepsy Journey - Day 12

What a day to remember...I think I'll call it the HALO day.

Heather had her awake brain surgery today. The morning started out very well..she slept soundly through the night and we had a nice morning together before she was rolled into pre-op. Her mood was outstanding. She was excited, giddy and intypical Heather fashion full of dry humor. At 9:30am they let me kiss her goodbye and off she went..ready for the journey she has been wanted for over 5 years.

As I tweeted about her..the outpouring of prayers, texts and emails was inspiring. I apologize for not getting back to each of you personally..but I lost count somewhere around 100 messages. God has blessed us and we cannot begin to express what your friendship means to our family. Each of you are a true gift from heaven.

After a 3:30 surgery I was summoned by the nurses to meet with Dr. Zimmerman. Dr. Z was optimistic as to the potential outcome. He explained the procedure and in my non-technical terms..and to the best of my understanding..this is what happened.

They first put Heather under with a light sedative. Once she was asleep they positioned her on her back and turned her head all the way to the right to expose the left side of her head. Once in this postion they shaved a few portions of her head, drilled a few holes and secured a "Halo" on her head. This halo was then secured to the table so she could not move. Once this was complete they opened her skull and removed the grids that had been inserted in her brain last week. At this point they woke Heather up. There was a drape over her face and a neurologist began to test Heather's ability to function, read, hear, see, understand etc. as Dr. Z began to identify exactly what portions could be removed. He told me he cuts the blood vessels in the Hot Spot Zones then carefully tests how much addtional brain can be removed around the Hot spots. When an activity caused Heather to stop functioning..they went no further and sucked the brain matter out that had been identified. I am sure this is WAY OFF..but like I said...this is what I got out of our 5 minute conversation. Dr. Z was concerned about her periphical vision...but other than that he thought she can through everything very well. She was joking all throughout the procedure with the Dr's and nurses...she was a model patient. He had warned her that once she was awaken..if she "freaked out" due to the halo securing her Head in place and her inability to move..the procedure would have to be terminated. Not a chance with my girl! ;)

I got to see her a few hours later and what I discovered completely amazed me. I walked into the ICU and she was sitting up, in some pain..but NOTHING like last week. She was smiling, talking, hungry...had had not vomited one time. In all reality..she looked the same as before the surgery! We had a wonderful time together and i just was in awe. As one of our friends put it..she is Wonder Woman! I got her some food and we began to settle into the evening. We took pictures, and she even started calling and testing people...:) you can't keep a good woman down. She was SO excited about the procedure. We did notice that she has some issues with her upper right peripheral vision..but the Dr's seem to think that may come back in time.

Everything was perfect..until out of the blue she looked at me and started saying things that didn't make sense..she grabbed my hand and started to have a seizure. She was "gone" for about 20 seconds..just starring and smaking her lips. This is one of her typical seizures. It made my heart sink...but then again, her body has been tramatized, she does not have any seizure meds in her system and the hospital was trying a new type of pain med she had never had before. These, combined with the fact that we knew they could not get all the Hot Spots..made it bearable.

I know we are praying for a complete seizure free life...but the goal is for her to reduce the medications and have a better quality of life so she can enjoy each day to it's fullest and not be confined to our home. We are encouraged by what the Dr's WERE able to remove today...we will just wait, pray and see what God has in store.

The reason why I'm calling this a HALO day is that it started with her being confined and secured to the bed...not being able to move because of her Halo. However, I know as Heather moves forward...no matter what the outcome of today..Heather will NOT be confined in this life..she is going to follow hard after God and do His plans to the best of her ability. She is going to continue to strive to by Holy for Him. The symbol for Holy is a Halo...

Heather..my hope, dream and prayer for you is that you always have a Halo over your head. You amaze me...I am so proud of you. Never give up, Always have faith and continue to be my Wonder Woman.

The journey continues...

Heather's Epilepsy Journey - Day 11

The time has come...

Let's get ready to rumble...

Now or never...

Brain surgery or bust..

Ready or not her it comes...

I guess you get the idea. Tomorrow morning is the day Heather has waited 5 yrs to arrive. She goes into surgery around 8:00am. It will not be a simple surgery, but we have faith and complete confidence that Jesus will shine...and we will all give Him glory. I know His plans will be completed in her..I just pray those plans match up with our hopes and desires.


You would all be proud of my girl. She is excited and giddy. You would think she is getting married tomorrow not having surgery. :) The only ill effects she has at this moment is withdrawl symptoms from not being on her normal meds. She is a bit shaky and is having trouble sleeping. We know these symptoms will go away after the surgery...and hopefully in the not to distant future she will have to go thru withdrawl for good since she won't have to be on meds any longer!!! Make it so Lord! ;)


An update on my post from last night regarding her hearing issues.... Apparently she has fluid on her brain and in her inner ear. The fluid is causing sound to echo and take longer to reach her left eardrum compared to the right. so everything is in stereo...Paying that will go away after the surgery as well.


I will be here the next 48 hours and keep everyone up to date on her progress via Twitter and Facebook.


Heather and I want to thank each of you for being on this journey with us. You have made it a blessed trip and we look forward to the first day of the rest of lives tomorrow..no matter what that holds.


Where two or three are gathered..Jesus is in the midst of them. Be with us tomorrow..I want Jesus holding her hand.


We love you all....

Heather's Epilepsy Journey - Day 10

Today is a day the Lord hath made..let us rejoice and be glad in it!

Are you a procrastinator? I know many times I am...there are so many things going on in life that sometimes, or many times I say to myself..I'll get started tomorrow. You do realize that God calls us to use everyday for His glory!

Heather posted a video today and the theme song states we should "sing until the whole world hears!" What are we to sing about? The power, amazing love and Good News of Jesus. No matter what we are going through in life, we can still rejoice and be glad in it!!!..if we know Jesus and have him in our lives. What a sad life it would be without knowing Him.

Our church recently did a series on Worship. Worship is so much more than singing..it is spending each moment sharing our love for Jesus with those around us..being Him in the flesh and "singing till the whole world hears"...

I am proud of Heather for her "Voice" in this world. she is not the greatest singer of all time..but she does spend each day doing her best to worship Jesus and she certainly does her best ot rejoice in each day.She has helped me pick up the pass in my walk with Jesus and become less of a procrastinator. She encourages me to "sing" with her..and for that I am eternally grateful. Today was a fairly good day for her. They have officially scheduled her resection surgery for Friday morning. The Dr's believe they have the data required for the surgery. Please pray that it will be a success and that Heather will finally be free of this "thorn" she has lived with her entire life. However, no matter what happens..please pray that she will be able to rebound from the surgery and continue to impact the lives of people in her worship of Jesus.

Tonight she has notified me that she is having an issue with her hearing. I am not certain what the issue is..I am trying to track her down for the details..please pray that whatever is causing her to be concerned tonight will disappear an her hearing will go back to normal. Music is such a key part of her life..Please pray.

I also heard Heather mention today that she wants to "Live like she is dying"...That is such a great song. May each and everyone of you...live for Jesus. may you strive to worship our Lord. May He bless your singing and may we procrastinate less...Live like you are dying>

We love you and God Bless.

P.S.- I will be spending the next couple of nights at the hospital with Heather so expect more regular updates on Twitter @flyingchristian and my Facebook.

Heather's Epilepsy Journey - Day 9

Today I am going to leave the update to my wife..the amazing Heather Siebens aka @AliveinMe - In her own words....
TODAY IS AMAZING
Posted 9 hours ago
I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early early morning!! But any way-is a great way...
They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.
He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!
This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.
They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!


Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!!


In His Love,


Heather Siebens @AliveinMe @EpilepsyCures
480-717-1018 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054


Jesus...To you be all the Glory, Honor and Praise. May your name be glorified by our lives as we strive to walk for you...


This is getting exciting!


Until tomorrow...

AMAZING DAY..... JUST CAN SAY- PRAISE YOU JESUS!!

I wound up having weird seizures throughout the night. That is always blissful, when they can see the seizure-before you know!! Then come rushing in as if you are about to die!! Perfect time early, early morning!! But any way-is a great way... thru HIM!

They came to talk. I was so blessed because my head was wakened by my nurse who had to give me a morning pill after all the chaos earlier, and check my BP etc before her shift ended. I woke up without a head THROB! Thank you all for your prayers!! Just after I was able to use the bathroom, I was up for the rest of the morning at 7:10-- in time to see my neurosurgeon come in thrilled with all going on.

He had them run that brain stimulation testing--BIG reason for all the depth wires in my brain. And it was to look at language-both reading/comprehending and very much able to read, fluently still. While they shut different parts off more... I had one odd reaction-nothing big... but my mind was all in tact, understanding, and knowing the words etc,,, but a flashing light would go off in my upper peripheral vision. Then one other at the end slowed some concentration... but otherwise ALL IS CLEAR that they are concerned about, to take out!

This has always been uncomfortable first having this first electrode surgery-- as for things in your brain is not normal.. but thru all your kind words, PRAYERS, and love-- I had an awesome day today!! Hardly any pain... to God be the Glory always. He knows the time-HIS TIME. And I sure praise Him.

They always want a couple more seizures for surgery-but they have so many of mine that it is a weird blessing. So few more nights of this wire stuff... then they will be resecting!! AMEN!

Love you all! All of you have been praying since Jan, 2009!!!! WOW--it is finally HERE! AMEN!!! I even got an awesome text message from a dear soul in Canada who somehow found out about me!! WOW!! God works wonders EVERY DAY IN OUR LIVES!! I am so grateful to have found Him and always stick to Him. Not regret any of what I went thru, or go thru-- as for I found Him, clung to Him, and in deep love with Him--watching Him work all different miracles thru every challenge! All worth it every moment. He is God-- God is GOOOOOOD!! AMEN!!

In His Love,

Heather Siebens @AliveinMe @EpilepsyCures
480-717-0609 (cell)
480-342-0511 (my room)
Mayo Hospital
5777 E Mayo Blvd
(RM 5W-11)
Phoenix, AZ 85054

1 Thessalonians 5:16-18 Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus.

Wires in, on and Brain OUT !! from Hetty Siebens on Vimeo.

Blessings ALL!!

Heather's Journey - Day 8

Day 8 has been a pretty good day for Heather. She has been fairly active and the RN has not had to give her nearly as much pain medication as the last few days. Heather did have some pain tonight..there is a electrode on her forehead that is really hurting her. I guess the Doctors are going to reposition it tomorrow. Hopefully that will lesson the pain. They continue to strive to get her to seize and conduct some testing...The goal is to be ready for surgery on Friday. :(   (AMEN-per Heather) We will just have to be patient and see what transpires.. Sometimes our wishes are not he same as God's wishes....He knows what is best for us! We have to just trust Him!

1 Thessalonians 2:4 Our purpose is to please God, not people. He is the one who examines the motives of our hearts.

I saw Heather post this tonight on Twitter and it rang something in my heart about the last week. Many of you may know my story, but I'm sure others do not. I'm not going to get into all the gory (only some-per Heather-he is dear!)  :) details tonight..plus this blog is not about me..;) But I will share my story enough to tell you that I have not lived up to this verse in my life. My entire life I did everything I could to please people. Sadly, that meant many poor decisions which caused heartache not only in my life, but also those people I was trying the please the most. Heather has always preached that I loved her too much. That I needed to focus less of my attention on her and more on Jesus. Don't get me wrong...I love God..but at times I forget that He should be #1 in everything I do. Over the course of my marriage to Heather I have been on a journey...a different journey than the one Heather is on..but a journey none the less. Heather talks about how she welcomes her epilepsy because it has forced her to put God first...That is the amazing thing about suffering...why is it so much easier to come to Christ when we are suffering rather than when things are good? Why is it easier to pray and surrender in hard times?
Heather has been an instrument of God in my life. Through her. God continues to mold my heart and teach me life lessons. These lessons are continuing to be solidified this week. By witnessing others actions and their outpouring of love for my wife and our family and by experiencing the pure joy of being a part of her story...her journey...I am realizing first hand the power of putting God first in our lives and I pray you are as well. What incredible satisfaction to honor our Savior first! He will not disappoint us and He will also open our eyes to the secrets of joy in this life if we choose to put Him above everything else. By putting Him first..others are pleased...God stands for us and wants us to receive joy. He is a God of Love and if we "pay it forward" His love will spread like wildfire..it will consume us..and everyone who calls Him Lord and is in the path will be caught up in a journey of a lifetime if we allow Him to lead. This is the key to happiness in life. Love the Lord God will all of your heart, mind, soul...He will love us back.
Miracles are happening everyday...enjoy the journey.


Until tomorrow. @flyingchristian (Christian Siebens)

Colossians 4: 5 
Live wisely among those who are not Christians, and make the most of every opportunity.

Colossians 2: 8 
Don't let anyone lead you astray with empty philosophy and high-sounding nonsense that come from human thinking and from the evil powers of this world, and not from Christ.

Heather's Journey - Day 7

It's Superbowl Sunday! Not that Heather could care less...but I think there is some symbolism and irony in today. Congratulations to the Saints for winning their first Superbowl...job well done.
As exciting as the Super Bowl is I know there are many more important things in life than football. As Heather sits in her hospital bed she continues to remain upbeat about her present situation and positive about her future. Last night was a difficult night..so much so that Heather now has a dedicated nurse on call 24/7 for her pain issues. The Dr's want to help control her pain so they can begin to analyze her brain activity. Nothing further can be done until she has more seizure activity so a surgical gameplan can be developed. So as difficult as this is to write..please pray for seizures. Pray that they will identify the exact location that can be removed and pray that section is resectable without negative effects for Heather. With God all things are possible...we are confident in that.
As I was watching the Superbowl tonight..I contemplated about what a "Saint" really means...According to Websters Dictionary a "saint" is: "A person of great holiness". Although many of us have "holy" moments... The only person I know who of great holiness was Jesus Christ. As earthly sinners we are far from saints...however, through the amazing power, grace and mercy of our Lord we have the ability to put on Christ and be His hands and feet on this side of heaven. Our "gameplan" should be that of a saint. I know neither Heather nor I are a saint..boy do we have stories...:), but it is our goal to be more "saint-like" and that is only possible through the power of our Lord. Saints also usually have to go through pain and suffering in their life. Jesus said we must "take up our cross daily and follow Him"..Heather talks about the Apostle Paul and the fact that he had a "thorn" that he had to deal with daily in his life. That "thorn" is never really identified..but despite his thorn, he impacted the world for his Savior. Heather wants to be a Paul...and she is willing to live with a thorn if that is the will of God.
I know that Heather truly appreciates the amazing encouragement and outpouring of love from so many across the world. Please continue your encouragement. It means the world to both Heather and I...But also please join us in playing the game...develop your gameplan...join the team and do your best to become a saint. Individually we can make some good plays, but together we can win the SuperBowl!


Until tomorrow...Blessings from Heather and I. We love you.

Day 6 - Heather's Journey Continues...

The weekend has arrived, but to Heather the days are beginning to run together. She usually keeps the lights off and the shades pulled to minimize her headache activity. It seems to me that she is beginning to get anxious for the pain to lighten up. Who would blame her! She also is complaining of a few issues that begin to occur when you are in bed and not moving for so long. But she remains strong, positive and motivated to do everything possible to make this surgery as much of a success as possible.
Today she was visited by a number of friends and relatives...When I arrived the room was full of flowers, cards, books, stuffed animals...she is fortunate to have so many people that love her..I know it helps to have people visit to pass the time and provide encouragement..but can cause headaches to increase..but don't be fooled, she is a trooper and would never pass up the opportunity to spend time with all!
Please pray for her as the Dr's begin to remove more of her meds and work to begin their testing...I hate to think of her having seizures, but I know this is a required step..so she is in the hands of Jesus. I know He will watch over her and protect her during these difficult days. Also..please continue to pray for her to be delivered from so much pain. I just got a text from her saying she is throwing up again due to the pain...I feel lost and don't know what to do other than lean on Jesus and all of you..she needs your prayers and we thank Jesus in advance for listening to the prayers you are lifting up on her behalf.
I know tomorrow will be another day of visitors..I hope it does not stress her to much. Please watch the videos Heather has been posting..she loves sharing pictures and music which are meaningful in her life. I know it is her prayer that through her life and the life of our family, others will discover the wonders of a life in Jesus..and even through her pain..she is doing her best to further His kingdom.
I couldn't love her more..or be more proud.


May you all have a blessed Sunday celebrating our Savior!

Heather's Journey Day 4 & 5

First off...please accept my apology for not getting an update done last night. In all honesty..I got caught up in my daughter's homework and was too tired to sit down and blog when we were done..So tonight will be a combination of Day 4 and 5.
Heather has been experiencing more pain than the last surgery. Not really certain why..but it probably has to do with the extra time Dr. Zimmerman spent trying to separate her Dura from the surface of the brain. Yesterday Heather spent most of the day sleeping...they did remove her IV's and put in a PICC in her bicep. All I can say is OUCH! She was telling me that they have to monitor the insertion of the PICC very closely..it is a dangerous procedure if not done correctly. I remember Heather's last PICC procedure. The hospital had to get my permission to do a PICC because of the risk. Heather was still incoherent and I was her Power of Attorney. Fortunately everything went well this time..except she did mention that the PICC line got too close to her heart and it made her heart beat over 150 beats/min...so they had to back it out and start over!! You may have also noticed from the pictures Heather posted that someone got into her room and tried to steal her computer...After a major fight, Heather won...but the intruder left her with a black eye. I would not want to see what the intruder looks like!! No one gets between Heather and her computer! :)
Today when I got to the hospital I was pleasantly surprised to find a glowing Heather..sitting up and typing away on her computer! Praise the Lord! She looked and sounded fantastic. The pain is still throbbing in her head...but it was controlled a bit better. We were able to eat dinner together. Heather has not been eating much..so to see her eat made me smile.;) We had a very enjoyable time with each other..took some pictures, talked about the future and even had a few laughs. That is actually not a good thing since laughing makes her hurt more..but from my standpoint it was fun...and in reality I know she enjoyed it as well. It's funny that when I look back on Heather's hospital stays in the past..many of the memorable nights are of us sitting together, holding hands and laughing. There are a few scary moments as well..but fortunately we have been blessed and Heather is always sucha positive patient that the good memories outway the bad.
The Dr's are going to begin to ween her off her epilepsy med's tonight. They want to begin the process of stressing her brain and reviewing the data from the probes in her brain. Fortunately both Dr.Zimmerman and Dr. Drazkowski are working this weekend..so she can actually progress with her treatment rather than just sitting in the hospital all weekend waiting for the Dr's to return!
I stand amazed and feel very fortunate to have the opportunity to interact with so many amazing people Heather has as friends. As I'm sure Heather has mentioned..I am a bit introverted when it comes to new relationships...but this experience has really opened my eyes to the wonders of fellowship and God's perfect love. I look forward to furthering my relationships with you all and pray Heather and I will be able to personally meet many of you and express our deep appreciation for your sincere care for our family.
May God grant us all the ability to support each other in both good times and bad. We are a family through Him.


Until tomorrow...Blessings to you all.


Christian Siebens  @flyingchristian