Struggleville

In Struggleville.

Which isn’t total disaster. A struggle means you are trying to actually get somewhere with it, some sort of progress. When you are just suffering, you can call that baby suffer-ville, end of the road, darkness, just name it- when there is no answer starting to grow on the horizon, it is suffering endless skies. Irony is, today was the date I came in for seizure study #2 to start my new walk to my 2nd brain surgery-way back in 2004. Type of struggle… Had answers and hope. 

Thats basically the adjective difference between Mayo in Phoenix I’ve gone to over 13 years, and it’s ” sister ” property around the corner from us in Jacksonville, FL….. Phoenix has yes a Struggleville to go thru, yet it’s on a horizon of hope. As where Jacksonville just leaves you suffering, and hopeless, completely in the dark with promised call backs that never returned. To actually know that by memory, but then fly out instantly and see first hand from all of my doctors, it was quite the awakening of what that Mayo doesn’t have in store for me, actually, for many.

This one in on the ball. They don’t let things freak them out like me having epilepsy- to steer a migraine medication attack away. They still attack it, just more calmly, and on video, in case I do seize, they have all precautions to stop that in the middle. They watch over the patient that may have a wild reaction to medication, but don’t just give them a medication that could be risky for seizures then send them off their property. Mayo in Phoenix cares that their patient stays well. They love you as their patient, but really don’t want to see you TOO often than needed.

This has been one wild roller coaster ride for me. I’m at the point I can eat again. But my head hurts from my neck/occipital nerve pain- which that also shoots pain into my ears. Just wild. Calmer sadly to say than when I first got here… But it is something I sure am praying dissipates.

I am trying to get off of all anti seizure meds and go on one. Never thought I’d try this one in my lifetime again. I had bad history with it, bad life going on with it, just a full blown nightmare I was living when we first attempted it. We will see how it goes. I am so sensitive to everything. I feel for the docs when I walk in their office here. But God has to have some unique plan still brewing, somewhere … About something, or I wouldn’t have been able to hang on so tight.

Gracious to all your prayers….

Hetty/Heather Siebens

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Thank you Dr. Vargas, Dr. Drazkowski, Dr. Stonnington, and Dr. C….. All the Mayo System nurses, food, cleaning etc team… You all make this part of life bearable.

Joshua 1:9 “Be strong and courageous. Do NOT be afraid; do NOT be discouraged, for the LORD your God will be with you wherever you go.”

My Home Away From Home in Phoenix from Hetty Siebens on Vimeo.

Awake Brain Surgery #3 Finished Complete-in ICU

THIS WAS THE MOST AMAZING SURGERY OF THE 3 RESECTIONS I’VE HAD DONE-TOTAL OF 6 TIMES BEING OPENED! I RECOMMEND THIS OVER ANY BRAIN SURGERY-ANY DAY-AS LONG AS YOU AREN’T FEARFUL… AND CAN TAKE SOME PAIN TOWARD THE END! WAS AMAZING!!!!

To God Be The Glory!

Heather Siebens

The Wellness Challenge

Heath

Health is here. Something we have been waiting for-for some time. Let’s just say, right before she was born was when I got hit hard with my epilepsy out of control. So many medical conditions this beautiful, now 9-year-old observed and learned about quick.

I know she was born with an amazing, kind, loving heart. But having a mom whom she loves so dearly, that is facing more than one illness and side effects of them everyday, her heart opened up in love for me as her mom, and as a protector of me that “understood.” She knew the days that were really tough, and she’d double ask on others to see if it was a day that we could play or go to the park down the street. She is also one that either was born with carefulness, or is something she drew in, during my illness, and strife of my ex husband attempting to be a far away dad-later in her life. She was very cautious. Not with just streets or heights. She just is cautious with about everything-and keeps her eyes on me–her mom. She would overlook more days than I ever knew, checking to see how she thought I might feel. Praying I was ok! She was always one remarkable child-well behaved, so loving. Yet, I do feel a lot was fear of losing me in one of my brain-surgeries.

She was so excited for this last brain surgery. Part was yes, very scared. But she had seen me go thru 2 brain resections. She felt inside, perhaps this one would get my mom better, more and more everyday-so we can do more and more that we love. And she was such a doll thru all the surgery and after. Yet I had to realize over the past year, while so sick, things had been altered much more than she and I were ever used to. We actually had quite some time in life when it was just she and I, in all circumstances, in our one bedroom apartment. I then saw how much dad was taking on, and even herself.

So we had planned to go to the mall-just she and I. And when I came all dressed, ready to get her-she was shocked! Didn’t know if I would really feel well enough, yet. As well as this field trip. She was afraid to ask me at first. But then I got a letter from the teacher asking. She was excited when I said of course I’d go. But the night before-she was talking about the trip in the tense as if it was just her going, not me. I asked her if she didn’t want me to. She turned to tell me–YES, OF COURSE. But she didn’t want to hurt my head or cause a seizure. My little heart just melted she takes so much on in that beautiful, young, CHILD-LIKE brain…. GO BE YOUNG!!! Let me tell you what is going on, but wow… I do thank you for such a heart, Tory.

That part of her reminds me of myself when I was little. I loved my mommy so much. It was all about her. But it isn’t. She needs to live, and be happy I am well– thank God for everyday we have. I have “missed” a lot that normal, healthy moms feel and do-for years. But we also have quite the bond and story for life. No regrets. Just a lot of adjusting to something so good in life!

I love my Tory so much… hug your kids. Her 9th birthday was the first one I was completely well for!! WOW!

Blessings!

Heather Siebens

@AliveinMe  @EpilepsyCures

HAPPINESS

Thrilled

Flexible

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

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Excitement!

Excitement

We sure all achieve excitement. All at different levels. For different reasons.

I was sure excited for birthdays, stay-overs, gymnastics meets, and travel when I was young. Then friendship, travel, beachin’ it, job-force, and blessing of a beautiful child and new husband as an adult. Then it moved to a totally new level when illness set in. I was excited to be able to function the next day. To be able to get thru a day without remembering when ex beat me-and turning to my overdosing. Going one day without one seizure. To be able to smile and help others smile as well. Moving on-To learn that Jesus is my Lord and Savior, finally. To find my true love throughout such a crazy life. To get thru each year, with new seizure issues inclining-with amazing doctors figuring out something amazing each year– until they found the FINAL ANSWER!!

My personal excitement this week is my appointment with my neurologist this Wednesday. First time after my 3rd brain resection there at Mayo Hospital. We had many complications-personal issues such as stress from being beaten after first resection in 2002. And body not able to soak up several medications. Moved onto second, which was very beneficial, than third. The third I just had in February-I will be ever so grateful, and amazed. They did it awake-and I was absolutely conscience for it. That amazed me. It was fun for me, except for the pain in the ending part. But amazing!

I have been seizure free since the resection on February 12th-which will be such relieving news for my neurologist. I saw my neurosurgeon last week-he was so delighted!! Thank you Dr. Zimmerman! But my most frequent specialist at Mayo-who has seen me thru such drastic times, both neurological and psychological-will be more than relieved… and he deserves that and more. I am ever so gracious for the care Dr. Joseph F. Drazkowksi provides at Mayo Hospital here in AZ-one who does it with heart, not just as a career. Sees it from the patients eyes. And I am ever so grateful God made sure I saw him!

This is where I will always make sure I have the RIGHT type of health care- one that I can choose Dr. Drazkowski- not one that makes me go else where… as for the “else where’s” didn’t fulfill my needs before. Not just medically, but personally. Know that matters.

Blessings to you all!

Heather J Siebens

Dr. Drazkowski

Grateful

JOY

I wake up today, everyday, in so much JOY– thankful that I know I am seizure free finally after 32 years, and my 3rd resection. I am ever so grateful so I can continue healing to be a better follower of Christ, wife, mother and friend for all.

I have many goals in life. But taking them all in stride… taking time out for myself. To enjoy the things I wasn’t completely able to prior when ill. To focus on Jesus and family… and be sure to also reach into myself… letting God take control, guiding me in His plans, His timing.

I’ve learned so much over the years during my illness. So there is not one part of me that is bitter. There was just this “learning” Heather… one who would sure, get upset at times of drastic troubles. But God, and my amazing docs at Mayo Hospital would be so uplifting-and get me back on my course. As well as a very loving husband. One who yes, was very fearful of my 2nd and 3rd brain resections- but one who was because he loves me so much!! And he made it thru!!

Overall, I can sit here, and honestly tell you I am ever so grateful that I went thru this the moment I got pregnant back in 2000. That is what sent my seizures flying, and changed them. I am grateful as for #1 I found Jesus #2 I have an awesome family #3 blessed with an amazing little girl, who also has epilepsy #4 I have learned where to focus, when not well

Thru all of this, I had my hard times of no one being there. But then I was ever thankful when I began to see Mayo Hospital- they were who I had, while I was searching for Jesus. My family did “tough love” in more of a aggressive way. In a situation of despair- not usual addiction. Not one where I would reach for anything, anytime. Just when hard thoughts of ex beating me would arise, and I’d pop the pills I was given too much of while pregnant to control seizures-my brain just recalled that. I am ever so grateful that Jesus called me to my church I found… and blessed me with my husband I have today back in my struggling days, and blessed me with amazing docs and an open mind for them at Mayo Hospital….ever so grateful.

Know, in any struggle… you are never alone. There is always someone who has been there. You just have to speak up- reach out… someone with an amazing heart, WILL REACH BACK!! I am one of them today!

Blessings!!

Heather J Siebens @AliveinMe @EpilepsyCures

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Deep Wires

True Care

My Precious One

Yes, my husband is my precious one. And I am able to sit here and type this because of the amazing, caring doctors that our AWESOME LORD Jesus Christ guided me to. And I am forever grateful.

They saw me from the moment that a neurologist in Alabama gave up. And I have had epilepsy my whole life- and now can see clearly how several gave up-even before it was “complicated”. One just “treated” without any idea what would have been best to at least try-step up to the plate. Another one I had in my early 20’s at a well renowned place in San Diego– even the charge is well renowned. However, the diagnosis was very incorrect, and overlooked. But, the doctor just kept my diagnosis the same as it always was, from 14 yrs of age- to 22… and there was quite a change in seizure type. Which happens a lot. I know that well-as for I always had the type with aura before- then all of a sudden I was sitting in the lane to get on the San Diego Freeway- when I awoke- I was the only one there!! No pre-seizure feeling! Plus the change in incorrect medication didn’t help, it worsened.

It wasn’t until I was sent to Mayo by an awesome private neurologist here in the Phoenix East Valley. He referred me to Mayo Hospital to see Dr. Drazkowski, as for he felt that brain surgery was an option. Which was such a blessing. It was an option. More than once or twice, as for I was a complicated case. When domestic violence sets in just following first brain resection, a bit of PTSD will set in. Worse part of it is, is that the PTSD didn’t cause seizures, it caused me to lean into overdosing. Taking large, large quantities of Phenobarbital to numb pain.That was the medication that controlled my seizures after first brain resection-even after my ex beat me. But I couldn’t stay on it. And that is where Mayo was still amazing. Most run from that. Afraid of lawsuit. Might deal with one overdose-set you straight and refer you to care, legally. But I went thru 3 hospitalizations there, and many times in tears with my neurologist. In addition to an added on psychiatrist and psychologist. But they all hung on-seeing I sincerely cared about my health and status. And truly cared for my neurologist, and all he put into my care. I never wanted to let him down. That was the beauty of his specialty as a neurologist. One who sees it thru the patients shoes. Feels for them. Shows them true care. Mayo never folds.. not one doctor I have had!

Thru every step of my eight years so far at Mayo, I have seen all different types of specialists. From neurology for epilepsy, RLS, Migraine, neurosurgeon, psychiatry, hematology, ENT, urology, the list could continue… as for I have interesting cases-from what was simpler epilepsy to intractable epilepsy-finally fixed with a 3rd AWAKE brain resection, to restless leg and TMJ (jaw popping out at night) to one kidney that works, absorbing of certain vitamins ceased – so I have to be infused, to air in my salivary gland!! HUMOR! But all of this can flare at more times-and lessen at others. I thank God they were able to proceed with this last brain resection, as for this Mayo does not benefit from the time spent in the office or the type of medication they prescribe, or how many they prescribe. This place is salary-and are out to fight for your well-being, less medication, of any type. And I am forever grateful.

I thank God for guiding me here. As for yes, my need has lessened… but my heart of thanks has grown. And I am forever grateful-standing up for all – ALL to be able to see Mayo docs, no matter what insurance, or non-insurnace you have!

There was this amazing clip by the past CEO of Mayo, if you haven’t seen if, click on here –>  http://www.cnn.com/video/#/video/podcasts/gupta/site/2010/03/22/sanjay.gupta.md.03.22.cnn  and forward to 8:39 to listen to what Former CEO Denise Cortese, MD had to say!  Blog intro is http://healthpolicyblog.mayoclinic.org/2010/03/25/former-mayo-clinic-ceo-denis-cortese-m-d-on-cnn-with-sanjay-gupta-m-d/#comment-1320

Blessings and wellness your way!

Heather J Siebens

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