Hits Just Keep On Coming

My earthly rock, Christian.

Truly thought I was going to Heaven this time around. I thought I was to go. It all started up on another intense psychosis/vision like round. I was standing at my bedside putting my wedding ring back on from my hospital bag while smiling a funky smile that began to go crooked. Then my body stiffened and was shaking tightly standing up, unable to move at all. My husband ran over and had to lift me like a board-straight everything-jerking. He laid me down as it all continued. Back arched, I made loud noises as I started to exit and go limp. Silent there I all of a sudden took a deep breath, looked at my husband and began to slowly talk saying Gooood bye, Gooood bye.... then conversed in complete english with him. Telling him "Jesus has come for me. You will be ok. It is finally my time. Tory loves you so much. You will do so good. PROMISE me you'll take good care of Tory!!! I need to hear it before I go, so I know everyone will be ok!! Oh my gosh, Tory, I need to say good bye to her! Go wake her up, I need to see her, hug her before I go! NOW!!!! (he didn't -knew I would be ok) Okay... then I guess you'll have to tell her. I love her. It's going to be ok now. I'll be waiting for you all. oh, Jesus is here.... Jesus just hugged you. I'm going. It's ok. I'll always love you. Good bye.

Then I went out. My heart began to slow in beats, breathing less. Until BAM!!!! I just sat UP RIGHT- eyes open!! In tears of joy!!! I was seeing Heaven- people in Heaven greeting me that I knew, missed and loved so much!!! I first shouted out- "There is Jason!!!! With no wheelchair!!! (Jason Mitchener) Oh my gosh!!! Then to my right- my breath taken, tears of joy- there is little Nickybear waiting for me-he knew me!!! My grandpa and grandma Botts!!! Barbara and Thelma... everyone is here.... THERE IS JESUS!!!!! I was taken over in tears of joy. Going on about the beauty and love. Then announcing how I am really going, not to be scared, I convulsed some on the bed- losing my hearing at that point, my chest beats slowing, pounding, and breathing going- I knew I was going. My husband got alert when I was gasping for air. He aroused me running his hands across my face and chest and my breathing came back without CPR. Even with all that beauty. He definitely had different plans. And me taking the "medical" CBD marijuana is just not made for my resected, malformed brain. I am seizure controlled without it, would like to stay that way.

Odd part about this round of convulsions is in between them, I'd have almost personal, hysteric delusions. I'd turn my head after a convulsion toward my husband or brother, and just start laughing over whatever my brain could barely think of- hysterically. Uncontrollably. Actually at least made this round a tad bit simpler to deal with. I am the Entertainer, says Billy Joel.

From this above to this below, to above again, and below again --as the "medical" CBD Marijuana worked it "wonders" for my body pain. I think my brain has to be taken into some consideration that things just do not route thru it normally, at all. I have had 3 brain resections for epilepsy. It is not of usual shape. All MRI's look odd, all EEG's look odd-especially if a neurologist knew nothing of my past. Here is what was going on in between after I took a dose of my medical CBD Thursday to calm some of the body pain down from convulsing.

Thankfully, I only had one small convulsion this morning. I think it is all fading finally. I wasn't sure for a while there. It is so far looking like me and CBD don't get along. That is what I took the day in the pool about an hour prior. That is what I took Thursday about an hour prior to the hit. Just wild. God has a reason for everything. I cling to Him.

Much love and thanks to all for their love and support.

In His Love,

Heather J Siebens  (Hetty)

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."

Whose Timing

Following Tonic Clonic Seizure and CPR

I wasn't sure after the beginning of this nightmare if I was ready- really ready for Heaven as my mind, body, spirit felt- or if it is an amazing trick of the brain. Either way, the second part of the beginning of this nightmare was completely held in Christ's hands. As we're all other parts, but this particular part had no fight with Satan in it.... Even during the fact my body was completely shutting down.

I will never know how to explain this. I am still trying to explain it to family so I can hear myself explain it to me. Most everyone knows my crazy history. Fearless Heather. Epileptic Heather. 3 brain surgery Heather- excited to have them. Extreme body pain Heather from the 3rd brain surgery. Artist Heather. Many hats, many others. But I am one in a million stressed, one in a billion worried Heather, just how my brain is mapped out. But I went into a total uncontrollable freak out session over my brain just totally jumbled. Unable to speak, to explain. 

My brain started to "closing time" around 2pm in our pool with my daughter. Just all of a sudden everything she was saying was so very slow, like she was high. So I was so confused if it was my brain or her. Cause she doesn't do bad things, my brain flips though. Never like this. So I text my husband a million times to get out there to see that ASAP so I could find out. I also text my brother to come out as well. I needed people to study and tell me if somehow Tory was truly a teenager acting up, or if my brain was going down, like I thought. And as I was in the pool.

They came out. Christian came in. Immediately her odd actions stopped, but I looked up to my brother and he was trying to explain to me what I text to him and nothing was making sense, then no one. The this awful worry tone and cry started as I turned to my husband screeching "I have to get out, I have to get out!!!" I crawled out, then all over the patio saying things that made zero sense. I would grab my brothers leg, then aggressively crawl away howling for help. I was up against our wall bawling as my breathe was leaving. My husband and brother held me asking me questions. I couldn't talk. Understood a portion of their words-when they were saying to take you to the ER I freaked our making a loud high pitch noise from my throat while spinning my left hand round and round hoping they'd unsterdand siren for ambulance. They called 911.

I fell into my brothers lap as my husband talked with 911. I thought I was speaking soft, calm, logical words to him. As my body was shutting down my mind, heart, soul knew where I was going. I was at such peace. My brother kept holding tight and so worried. I kept "speaking" to him. Telling him how special he has always been to me, how much he has coming in life yet, my life was complete having him along our ride. I then wanted my baby Tory by me and I explained to her in my jibberish language how my life change the moment I knew about her to come in my life, how strong she made me, how much she had to live for in the way her heart wishes, and I love her always. I felt two tears drop on my right arm from brother-to me it felt like he was confirming he understands, he is with me and Jesus, he will be ok. I was at peace as my heart slowed down and I stopped breathing. I was looking at the beauty of love in family and preparing to enter Heaven when all of a sudden I woke up, heart started. As I opened my eyes to my precious husband giving me mouth to mouth. I was so touch, amazing yet confused and almost saddened my "Home" was not going to be pain, seizure, illness free in Heaven. I was going to have a harder fight.

Right now, still no one has a positive on what caused all of this. No one knows if these convulsions are completely done, or just temporarily calmed from an injection I had to have today.

I've had over 30 convulsions a day and some awful endless post ictal status. Couldn't speak forever. Some seizures would paralyze my legs and arms completely. Alter focus ability. Just wild ride. We are still figuring everything out and praying the hours it stayed away after an injection today, that it has just ended. 

I mostly pray my babies all come out un damaged from all of this. My friends and family just have beautiful hearts, and I know Jesus hears you all to be able to keep afloat.

I know we each have our timing in life from God. So I'll never know if I was supposed to go to Heaven Saturday but human power got in the way. Or if he gave us these brain to know to do things to keep our loved ones as long as we know how thru His guidance until His true time comes. I don't know, but as tragic as it all seems, that early on part still blows me away when I think of it-just amazed me.

Love you Christian, Tory, Troy, Mom, Dad, Steward, Linda, Grams and on and on all family and amazing friends..... Blessed I am.

In His Love,

Heather (Hetty) Siebens

Acts 1:7

He said to them, "It is not for you to know times or seasons that the father has fixed by his own authority."

Ecclesiastes 3:2

A time to be born, and a time to die; a time to plant, and a time to pluck up what is planted.

Job 14:5

You have decided the length of our lives.

You know how many months we will live,

And we are not given a minute longer.

Never Again- Mayo Clinic in Jacksonville, FL

Above- my disaster from "Mayo Clinic" in Jacksonville, FL- ONLY....

To that I say-

It used to be due to several cruel people, really. But this one truly took the cake. No one can take someone (for example, myself), who has conquered so many health battles in life, and in turn use those same health battles against me. What I am referring to when I say this? The horrific "Special Notes" written in a biased and untruthful manner by Dr. Kristine M Thompson (a physician in the Mayo Clinic Emergency Room in Jacksonville, FL).

This place lacks dignity, care, testing, solutions, strategies. The core of the problem is the amount of staff, next problem, the type of staff.

We can all go back in 2003 and discuss...what I went thru, what my neurologist from Mayo in PHOENIX AZ... went thru without a wink- TO SAVE ME.... But I do not take judgements from ED people, who haven't chosen a specialty- who don't stay true to their patients..... and who do not bring up your history charts to see that you have never once sought out pain medication in your lifetime. Been in excruciating pain that my... MY doctors, no- MY SPECIALISTS in Phoenix, AZ Fight and test, and fight, and retest until everything is exhausted.... Then pick up again and start over.

So, in a move I think anyone would agree was a very well-reasoned, we decided on Jacksonville, FL - which so happens to have a large Mayo Clinic minutes from our new home. We all agreed that having Mayo Clinic so convenient and close to my house in Florida would help this pain disaster. Until we GOT back, we didn't figure but a second round for pain treatment would be needed for my ferocious pain here at the JACKSONVILLE MAYO AND  will be traveling back to the REAL MAYO- at Mayo in Phoenix, AZ.... since no one here calls back, and no one here tests or cares. Which is totally ok, I've ALWAYS LOVED THE ONE IN PHOENIX.... I named my cat after it. I had all 3 brain surgeries there and more. And they push on. Respect.

We HAD to go back to the ED in hopes these people, like Dr. Braggs, or really more off Dr. Thompson were just living nightmares, that may have repeated more than once or twice, but it could have just been their foul weather here, their bad short stocked nights, or really in fact, that they were just as horrifying as they really came across each and every time???! I give people more than second chances, right!!?? Well.... Dr K Thompsom belittled me in my pain, and discomfort to the point I was already nauseous from pain- but she threw it out of proportion. Judging me WHY I REALLY was there, what for, and she would control what medication to prescribe - which I don't have necessarily true allergic reactions to, but rather can have sensitive reactions to that defeat the purpose of the medication.

Did Dr. Thompson EVER read my 13 year devoted chart to Mayo, at least Mayo in Phoenix and Rochester? NO. She would have seen I invested as much time, energy, money, trust, and health into MY docs, that she had zero idea where I was standing today in life. She has poor judgment and clarity... For that should not be "caring" for anyone. As for hers isn't just a rainy day. Her additude is every night and day.

So due to Braggs, John, many others and of course, Dr. Kristine M Thompson, I will fly 3000 miles and back every week before I EVER drive 3 exits to see them ever again. The facility as a whole is disrespectful. There is zero care of your concerns... You are just a number at THIS MAYO IN JACKSONVILLE, FL.... THE REASON people in the Midwest to the West Coast NEVER HAVE HEARD A PEEP ABOUT THIS MAYO. The reason THIS MAYO even runs a LITTLE DIFFERENT SHIP and has its own "secondary" number as opposed to just the ONE Clinic number.
The Mayo in Jacksonville, FL won't end here... Neither will Dr. Kristine M Thompson. This is when things just begin. And you just wish you would have thought twice about NOT BEING IN THE MAYO SYSTEM OF RESPECT, INTEGRGRITY, NON-judgmental of your patients.... Like the Mayo in Phoenix, Scottsdale, AZ.... And Rochestser and all sister hospitals in MN. You have truly begun a nightmare Miss Kristine Thompson.... Unless you know how to apologize, admit failure, face to face and on paper work in the next 90 days.... You have so much to answer. I will be there. But you owe all, ALL OF MY WESTERNIZED MAYO's SORRY's. We live a bit different sharp life in Western America- which is I guess why people look for Western medicine. Start With my neurologist, I'd be thrilled to go down a list of people you need to include Ms Thompson. As for my doctors never fade. MINE DONT....

Keep working the way you wish.... I will keep traveling THE FRIENDLY SKIES to Mayo in Phoenix, AZ..... BLESSINGS.
IN HIS TIGHT GRIP,

HEATHER J SIEBENS

8-31-15

To God be the Glory, Honor, Praise!

Proverbs 13: 13
People who despise advice will find themselves in trouble; those who respect it will succeed.

Proverbs 24:12
Don't try to avoid responsibility by saying you didn't know about it. For God knows ALL hearts, AND HE SEES YOU. He keeps watch over your soul, and He knows YOU KNEW!! And He will judge ALL people according to what they have done.

For Dr. Joseph F Drazkowski, Dr. B Vargas, Dr. R.S. Zimmerman, Dr.Cynthia Stonnington .... This verse below applies to you all so perfect in my heart-with so many thanks! For God has used you all as a distinct tool and continues to in this generation-yes for me!!! But Amen for ALL. Bless you all ....this is for you....

Matthew 4:24
News about Him (Jesus) spread far beyond the borders of Galilee so that the sick were coming to be healed from as far away as Syria. And whatever their illness and pain, or if they were possessed by demons, or were epileptics, or were paralyzed-HE HEALED THEM ALL.

Cut and Stapled Many Times from Hetty Siebens on Vimeo.

Below is my amazing Epileptoligist who saved me more than once- Dr. Joseph F Drazkowski MD - puts so much care and kindness into his strategies throughout the years! God bless you!

Matthew 4:24

News about Him (Jesus) spread far beyond the borders of Galilee so that the sick were coming to be healed from as far away as Syria. And whatever their illness and pain, or if they were possessed by demons, or were epileptics, or were paralyzed-HE HEALED THEM ALL.

Blessed

This is my other amazing neurologist at Mayo Clinic Hospital...in Phoenix, AZ.... Dr. Bert B. Vargas. This man rocks not just how he does his work, but his attitude is like a real friendship, caring soul who pushes all cards to make EVERYTHING happen for his patients. 

I flew into Phoenix in the middle of my vacation in FLORIDA, to see him for my normal injections. But the scheduler didn't have me set up for both, just the Botox one. Which has ALMOST always done great work on my surgical site on my head from all 3 of my brain surgeries. But I've had a couple mighty failures when this DOC wasn't the one able to do it. And price was paid. So we had hilarious stories to share starting with my drama or the last one I had by someone else that made me visit the ER at least 5 times from however she did it wrong. This doc knows my surgical area, where to put more and less, and gentleness. Then when found out I was not scheduled for the nerve block, he told me to hang tight in the waiting area, see what cancellations come up, or short appointments! I was more then willing, otherwise he had me booked pronto for the next morning at 7:30. 

He came running out to bring me back, excited he could do it all in one day, little time. We both are just so humbled and honored by the other-which makes it all so much more amazing. The docs I have there that care like that-Him and Dr. Joseph F Drazkowski, I will never part with until both retire- no matter which Mayo I live closest to! 

These are the types of neurologists of all types you should have. The caring ones that know you by name, and history. These people are people that matter and receive more than 5 stars in my life!!!

Blessings to you all....any questions....I am always open!

Blessings,

Hetty Siebens 

Close to my 5 yr Anniversary of 3rd AWAKE brain surgery

Very Painful 1st day 24 hours after the in depth grids were placed in.
Trying to smile to show my love to all!

WIRED UP from Hetty Siebens on Vimeo.

Lifting Kate McRae and Family in Prayers

Long Time Later

Mom and Daughter

I felt awful, responsible at first when she was six. She had a couple doozy seizures prior when very young, but they had seemed to dissipate. I was so grateful to God. My mother always felt at fault for birthing me this way--but God always has a reason. It was a bit tougher on me in one way to not feel responsible for her having epilepsy-as for I have it, and had it all thru pregnancy. She was medicated in me. But gratefully, I accepted Jesus along the way after I had her--which gave me peace and clarity He has purpose.

I just got out of the hospital here at Mayo, again...having to switch medications. They are harsh on my bad kidney. But shortly after we saw Tory's neurologist who wants to run EEG and in patient again, to see how and if activity is there anymore, or now. Taking her off that small dose of medication soon would be a blessing. I've been on strong stuff my whole life-and it tears your body down. So I am grateful to God for at least this chance. As for I have been thru the ringer as an adult with it-not many cases like this--and I would be gracious if she got a shot at NO brain surgeries--especially not 3!!! The first and second were smooth-- the 3rd was too except for the after-math. That one was done awake. I had it done 12th of Feb 2010- I am just now getting back on my feet from extreme body pain--I am so grateful...

Here is an older video explaining what was going on....

Blessings to ALL!!

Hetty Siebens

http://aliveinme.net

http://www.facebook.com/AliveinMe

http://www.twitter.com/AliveinMe

Jesus Heals

Epilepsy took a toll on me-for the past 2 years, 10 years, really all my life. But these last 2 years hit a toll - one that I thought I'd never make it thru--but God provides. Even when we do waver or think He has busted out on us---deep down we know better, which is why we bawl everytime we try to be BIG and tough and not need HIM!! We need Him for every thing-- or we wouldn't be breathing. I have been blessed with my 2nd go around family - we all love our Lord strongly-help pick the other up when down. Unfortunately when basically born with illness, the other very well- that person is doing most the "helping Up" in life. So illness is stressful as ever for us-- but is also beyond so for our family-- just remember that.

Gratefully since the two year battle of severe body pain I had after my 3rd awake brain surgery- I've gained blessings yet lost others due to the extreme cut out-- but have been healing from the extreme pain over the last two years-and almost instantly when we moved back to AZ-- for that I am ever so grateful!!

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.