MOMENTS OF THE HEART

His placement of my current "home in Jacksonville,FL" has become so powerful!  His guiding light has brought me to so many places. Prayers have been a constant reminder, of the path He has led me to.  The "touch upon my heart" is overwhelming.

 Reviewing some of the Face book support group friends I have; Idiopathic Hypertrophic Cranial Pachymeningitis, Meningioma Mamas, ARC, Sibling Grief, Prayer Warriors, Blue Sky Wellness, Mexican Medical Ministries, Child Fund, UTHS, Daley Group...so many more.  You are part of this journey with me, and I thank God everyday for your love and prayers.

More than I would like to admit, I am reminded of the pain, darkness, and fear so many have in their lives.  The need for His love is everywhere.  All hearts in this world have their "moments"... their "days in the sun"...and thankfully, He can send these "angels among us" to change the darkened path.  You never know what "good", a spirit can truly be holding for this world.  The light He gives us can be "sparked".

https://www.youtube.com/watch?v=kQXtZ-kZWDI

Let not your heart be troubled... John 14:25-27 
Jesus says;
25“All this I have spoken while still with you. 26But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. 27Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

SHOWERS OF LIGHTED BLESSINGS

Yes, truly I am rejoicing!  His path on this journey, has become so full of His light.  The fellowship with so many new "kindred spirits" is; as a new friend of mine, Daan, said "Shock and Awe"!  Each time I think...surely He has Blessed me enough!  I ask,"What is "enough" to Him??" I prayed for the answer...and He gave me this:

 “I will cause my people and their homes around my holy hill to BE a blessing. And I will send showers, showers of blessings, which will come just when they are needed.” Ezekiel 34:26 (NLT)

Showers of Blessings!! Just when they are needed! Yes, that is what is happening...but instead of rain...there is light!  His promise requires me to be a "blessing" as well.  I am praying I will not let Him down.

It is Sunday in Jacksonville, FL.  In conversations with many, I had asked about a Church to attend.  There were many offered, but most of them were some distance from where I am staying.  So, yes, of course I prayed for His guidance.  On the wonderful Internet access, I "googled" for choices close by.  I found one, New Life Christian Fellowship.  Their website had some wonderful information and I prayed along the way. Yes, He blessed me again!

It took me three attempts to park my car...I am laughing, but there was a reason.  A couple, just a short distance from me, had parked and were heading into the church at the same time.  I realized, it must have looked so funny with my car going in and out...so I said as much to them.  The man said, smiling, "yes, three tries, and you made it".  I laughed and they laughed with me. Daan and Odette introduced themselves to me. They saw the Aphasia Button I had put on my jacket and asked a bit about it.  I explained my journey in the area, and then... are you ready? Odette told me that she too had a brain tumor some years ago!  Really?!  What were the chances?  He had planned for us to meet, I do not believe in "chances".  From that moment we became "kindred spirits".  Sharing His love and light!

We are close to the same age, and I am always aware that so many people have encountered pain in their lives at one time or another.  I was waiting...to listen.  The music was so wonderful and the people so kind. The pastor's message included Nehemiah and the wounded Tobiah.  About staying "on course" with His Purpose.

 Daan and Odette offered dinner to me after the service.  Their lives are so joyful, although there had been much pain.  We prayed and cried together in our sharing moments.  Truly my heart felt more of His love and light, yet again!  They introduced me to another Joan, then Raquel, Emily, and so many more who are submitting more prayers.  Odette is from Nicaragua and Daan is from Holland.  The world becomes so close, as I journey forward.  Now more prayers are extended world-wide, for my wonderful Dr. Hanel, Dr. Allen, Lyerly Neurosurgery, and Baptist Hospital. (I shared extra cards with them)

A special request for all my friends and family; please keep these new "kindred spirits", in your prayers. We are all walking in His light, in fellowship.  The blood of Jesus Christ has forgiven our sins and protects us from harm continually.  Such is His Amazing Grace!

http://www.youtube.com/watch?v=CDdvReNKKuk

MY SPIRITED ADVENTURE CONTINUED...HIS GUIDING LIGHT

 His guiding Light that brings so many of those who "shine" with Him; do you really believe? I do more than ever!  Those moments in time; that were brought during my "Spirited Adventure" are His omnipresence!  How would we know... without His leading us..... to hear and see at just the right moments?

"He Lights up my Life"!
www.youtube.com/watch?v=b07-yKnKRMQ

**** Explanation from my Heart...My Testimony given as a student when part of our Choral Group that travelled to so many places from Southwestern (Bible) College.****

Many of my colleagues will remember my testimony as given years ago, and the "one" closest to my spirit via His Spirit, He used his child, Keitha Story Stephenson... At the age of 16, my life had become tangled and full of darkness.  I did spend many nights at my window...contemplating my own suicide...I missed my mother so much...troubles were left and right...and I was at the very end.  I called my friend, Keitha who had been so caring through this troublesome time.  I was already starting to cut my veins...I cried, telling her that I just could not go on...to please forgive me, I was giving up.  She cried too.  She started reading the Bible to me, John 3:16 "For God so loved the World that He gave His only begotten Son....", and then she told me how much He loved me...that no one else would ever love me more!  And His Spirit entered mine...when I prayed with Keitha, praying for Him to forgive me and take over my life. I realized this was His Truth!  He loved me!!
John 14:6  "Je suis le chemin, la vérité et la vie»
 He saved me for eternity and no one would ever pull me away from Him!  He consoled my heart and helped me understand my mother's suicide...and why she had to leave me....but this was not His plan for me! HE lights up my life continually and fills my heart with His "song"!  I am His child...He will take me Home in His timing...

His light was shining during my day at Baptist Hospital/Lyerly Neurosurgery.  First time meetings and interaction with those who "touched my life" this day:
Beth, Nathaniel, Yvette, Ryan, Meagan, Gail, Shannon, Michael, and Dr. Allen - they are in my prayers, knowing some needful times are ahead. With new plans forthcoming, I will see them again, soon.

Seeing my nurse, Holly, again was amazing!  She said something to indicate that I probably did not remember her.  I smiled at her saying of course I did.  It was not my favorite moment, I will admit.  The timing was when a Cisternogram had been ordered to check for a CSF leak, and Holly was so concerned for me.  She gave us her personal phone number if there were any problems for the immediate and interjected test.  I now hugged her, to thank her for all her special support, even though it was so painful at the time.  She knew.

I met a very special woman, Barbara Hurlbert CMPE!  It was a surreal moment when I saw her just walking through the hallway where I was.  Even though I had never met her before, I had read about her on the Lyerly website.  Before I could stop myself...I said this aloud, and she heard me.  She stopped, looked at me, and then we were in communication.  My speech is still in that aphasia place, but she didn't mind.  We had a lovely sharing about Dr. Hanel.  Yes, he is very well loved and known, by so many in this world, and I am certain..... "on the other side...our Home in Heaven".
http://www.lyerlyneuro.com/hurlbert.html

There are plans ahead to take me to Jacksonville for awhile.  More treatment of the infection involving my temporal bone is needed.  After meeting with Dr. Allen via the expertise of Dr. Hanel and the amazing interactions of timing allowed by our Lord...it is needed.  Hyperbaric oxygen treatment (HBOT) is on the plan along with another PIIC line to be inserted.  The HBOT is a very" specialty guided" area and is only approved for certain medical needs.  According to Dr. Allen/Wound Care Physician, mine should apply.  (he is a licensed HBOT doctor)  We are awaiting the approval for this.

Dr. Hanel and I regarded much of the latest medical reports that were sent to him.  There were many areas I had questioned....he had the answers. Always amazed...never surprised.  My speech and word retrieval issues makes it difficult to say what I want to say...he is patient, kind, and understanding, through it all.  Perhaps, the most important words are not even available, or do not exist.  My heart, soul, and spirit, through prayer, will say what is needed.  The words "thank you" are not enough! Merci beaucoup, mon ami!

So it seems, this "adventure" is to continue.  He is guiding this process, I am sure.  Through His Guiding Light, those newly met "kindred spirits", and my precious family and friends prayers, we will continue to work on His Purpose in healing.

A SPIRIT OF ADVENTURE...GOD'S BLESSINGS

APPROACHING LIFE AS AN ADVENTURE

 Make everything you do an adventure.

You are an ambassador of Christ (2 Corinthians 5:20 and Ephesians 6:20). Pray and look for opportunities to be a good ambassador in everything you do and everywhere you go.

 Make it an adventure to pray for others.

 Devote yourselves to prayer, being watchful and thankful. Colossians 4:2

 Make it an adventure to grow in the Lord

Praise the Lord. Blessed is the man who fears the Lord, who finds great delight in his commands. (Psalm 112:1)
I delight in your decrees; I will not neglect your word. (Psalm 119:16) 

 Respond to hard times with a spirit of adventure

'I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world'. (John 16:33)

 Would I ever have considered a Dr. appointment an adventure? Would you?  And yet, it became one of the most wonderful adventures of my life!

Prior to my appointment with Dr. Hanel in Jacksonville, FL, I had asked everyone I knew if they would like to accompany me.  It was not that they didn't want to....but every one's schedule had become so full!  As I prayed about taking this long trip, I knew...I would not be alone....He would be with me!  He would fill my heart with joy, allow my spirit to have peace, and supply me with unbound blessings!!  And so..... HE did!

 I had driven around 4 hours, many songs had been sung, prayers said aloud, and loving Bible verses remembered. The turn to approach the I-10 light was red, and I changed the music station to "Country Songs".  Oh my God... it was playing "You Find Out Who Your Friends Are!"  Something made me look in my rear view mirror as I was so happily singing along... a familiar and amazing "smile" of a man behind me was there.  Was it really who I thought it was?  I still am not sure, because the light turned and the road required complete concentration.  The car seemed to fade behind me.  I was so happy!! Smiles, laughter, and joy permeated every part of me!  Heaven must be like this! (funny, how chronic pain can disappear)

The I-95 in downtown Jacksonville, FL is full of road work. I had my Magellan turned on and the lady's voice was saying something; I could not hear.  My eyes were having difficulty with sunlight glare and I was going to miss the turn I needed.  Then this startling red vehicle was behind me.. it held back, flashing its lights to indicate I could move over in front of it...I did...I heard the Magellan voice say to move over to the far right...I did...and the red car followed...the concentration of making all the turns kept me from trying to figure out who this "angel" was behind me...and then I was at the hotel...I heard an engine roar behind me...and it was gone.  Placing my car into park, I bowed my head, hugging the wheel in thankful prayer for all the wondrous joy and safety He had supplied. (my prayers are still being said for whomever this "angel" is)



Dinner plans with my friend, Charade, had to be cancelled, she had become ill.  I told her not to worry, but please get better soon, and she was in my prayers.  So, my dinner night was with Him!  I had my own gluten free foods with me...I always do when traveling.  Fresh coffee downstairs in the lobby, my own food, reading the Bible, asking Him questions...looking for answers and praying...ahhhh!  A special delight to soaking my feet in the warm pool water and enjoying all the stars, birds, trees...His amazing gifts!  A bubble bath was in store, I sang songs in every language I know..some Latin, some French, and of course English!  I knew He was listening!  Prayer time after visiting my family's Memorial site was best.  He comforted me as I asked for guidance on the next day's appointment with Dr. Hanel.  Wonderful peaceful sleep followed.

His gift in my "Spirited Adventure"....to be continued....

A SUMMIT SCHEDULED FOR RARE DISEASE ADVOCACY

2 Corinthians 9:15

Thanks be unto God for his unspeakable gift.

http://www.globalgenes.org/rarelist?gclid=CjwKEAjwkMWgBRCJ1L_wypbX0wkSJAC3Xio2wMLpmPaX9FqFMebXQpQM6l5nbSpU2y8w6q7JFrMxKBoCdirw_wcB

http://globalgenes.org/2014-rare-patient-advocacy-summit/

Through many attempts to assist others... not only with those I know who have the rare disease of Idiopathic Hypertrophic Cranial Pachymeningits...but those also considered with "idiopathic" rare diseases of any type....this summit is an answer to my prayers.  The rarity of the most recent findings in my own family's auto immune diseases, also fall into this.

Around a month ago, after my early morning devotions and prayers, I felt led to start a Face book Group ...
" Idiopathic What?"  His guided moment for my Purpose in this journey had reached me.
The process to offer any information available is time consuming. My own research is ongoing.  Slowly, the patients, their care givers, supporters, and professional medical workers, are coming together here.  The interactive "helps" are gathering.

God's timing is perfect.  Experiences He has given me, sustains that understanding.  Now, in addition to my very rare "idiopathic" diagnosis, we have encountered new family diagnosis' as well.  One of my daughters and two of my nieces,( all born the same year, but in different environmental areas of the world), have been diagnosed with an auto immune disease of the thyroid.  One has Grave's Disease, the other two have Hashimoto's Disease.  Three of my grandchildren are still being diagnosed,  one has developed a possible bi-polar issue, another has several allergies, and the other has an extremely low blood platelet count. Now, more than ever before, the genetic disposition of auto immune diseases in our family, has become prevalent.

Many of those who read my blog may be of more importance than ever before.  In my prayers, I continue to ask for His continual guidance towards the betterment of life for all concerned.  His creation of us has a definite purpose, the most important, is to share His Love.  With good health towards our body, soul, and spirit, His purpose will be met.

I am so very thankful for His Grace.

STORMY TIMES WILL TEACH YOU TO SAIL

Mark 4:35-39New International Version (NIV)

35 That day when evening came, he said to his disciples, “Let us go over to the other side.” 36 Leaving the crowd behind, they took him along, just as he was, in the boat.There were also other boats with him. 37 A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. 38 Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?”

39 He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.

"You Raise Me Up to walk on Stormy Seas"

https://www.youtube.com/watch?v=Yfwlj0gba_k

Yes, today was on the "stormy" side.  My ship was in a squall.  I prayed, oh how I prayed....

There was a Dr. appointment that brought me to tears.  Sometimes we are expected to know how others feel... this was a preparation for me.  To learn, I needed help in the storm.  He sent me my nurses; Meagan and Kim!!

Have you ever heard that song, "You Find Out Who Your Friends Are"? 
https://www.youtube.com/watch?v=6EL7SY061sQ
 God gives us friends and family who can help guide your ship.  Angel shipmates perhaps!

No, I am not afraid.  Jesus helped me with my shipmates today and the storm has calmed. I am still being taught how to sail on this journey!

ROOT CIRCUMSTANCES

I Thessalonians 5:18
"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."

In my hometown. Birth, food, water, all the "firsts" of my life on earth... began here!  My human world roots!  Walking in familiar sidewalks and streets, the sounds of old familiar clocks, train whistles, and birds caused wonderful awakening. The thankfulness of the "beginning" circumstances hit home.

The cornstalks in seas of acres and acres hold a wonderful remembrance.  Somehow,they do not look the same.  They are a different color than I remember, a different odor of the earth is rising.  Is it a change in me or a change in my old environment?

There is so much talk of our "global warming".  My thoughts suggest "global mutation".  Our pathological dissection can indicate changes in our genes, prior to or after birth.  Is it our DNA or is it environmental change, or perhaps both with other outside entities?  The question remains "idiopathic".

God has made us in His image.  What is that really?  I understand it to include our body, soul, and spirit.  There is a portion in human molecular make-up that is called laminin that caused a great deal of stirring. Here is one part of information from Wikipedia:

Many Christian apologists, most notably Louie Giglio, have written about the fact that laminin is shaped like a Christian cross, comparing the role of the cross in theology and laminin's role in the human body. For example, David D. Swanson states: "Our knowledge of truth is most clearly revealed on the cross of Christ. And what holds the human body together? Laminin. And what does it look like? A cross. Coincidence? Some would say yes, but I think it is yet another way God reveals his glory to us. I think God is the one who holds all things together-our bodies-our world-our lives."^[27] Fazale Rana, a biochemist and apologist, disagrees with Giglio and instead argues that "Instead of pointing to superficial features of bio molecules such as the “cross-shaped” architecture of laminin, there are many more substantive ways to use biochemistry to argue for the necessity of a Creator."^[28]

Regardless, my belief in Jesus Christ as my Savior is not relevant on laminin.  The Cross that He gave His life for us is the "key" to our eternal life with Him....not my cellular or molecular structure.  The healing process exists in His Purpose.

I continue to give Him thanks for all of my current and "root" circumstances!  

THREE IHCP SUPPORTERS

"For where two or three are gathered together in my name, there am I in the midst of them."

MATTHEW 18:20 King James Version

 So onward with the real goals in this journey.  Helping others as much as possible. 

Now, there are three of us with Idiopathic Hypertrophic Cranial Pachymeningitis who have joined together.  We communicated on a three way call recently.

The manifestations are so very different for each of us, however, there are some predominant basics that remain the same.

Ray - diagnosed 3 years ago at age 61, main problem was extreme headache, no epileptic seizures, frontal lobe main area of dura involvement, after MRI and CT evaluations, bore holes were used to gain access for biopsy of the dura and surrounding meninges.  Many trials of cellcept, and other drugs have been applied.  Ray says he feels like a "guinea pig"!  Average ER visits per year have been approximately 4, and always required him to be admitted for further tests along with treatment.  The ER visits have occurred with his heart, liver, and of course his brain.  No craniotomy has ever been performed, but numerous bore holes in further pathology requirements.  No tumor has ever manifested.  He had to leave his job and is now considered disabled.

Wendy - diagnosed 5 years ago at age 38, main problem parietal lobe, with headache,and epileptic seizures. No tumor or craniotomy.  Many bore holes for pathology.  Besides the epilepsy being treated with Keppra, she has developed other cranial nerve palsies in her legs with loss of feeling causing her to use a wheel chair for some time.  Other drugs used have been corti-steroids.  Her average ER visits total to about the same as Ray's, 4.  With again being admitted for further testing and treatment.  She has remained working with much understanding and assistance from her company. 

LIKENESSES:

Wendy, Ray, and I: tinnitus, hearing loss, light sensitivity to eyes, dizziness, migraine, and vertigo. No CSF leaks. 

Wendy and Ray: No tumors, Cellcept and corti-steroid treatments.  Often times these drugs seem to cause other extreme issues and ER visits. They both have hypertension and weight gain.  

Wendy and I: Epilepsy,(treated with Keppra), double vertical vision

Ray and I: Diagnosed at about the same age of 61. Loss of time...not to have been epileptic associated.  He recently lost a total of 3 days, the most I have experienced was a little over an hour in Jan of this year.  Abnormal EKG's, mine were sinus bradycardia, his were tachycardia. (he has developed a leaky mitral valve) Elevated AST. (he recently had extreme elevation and was in the hospital for 4 days until his status was normal, this required a change in his prescriptions for trying to treat the dura)

DIFFERENTIALS:

I am the only one having had a tumor, craniotomies, infections, aphasia, hypotension, weight loss, and Celiac Disease. (temporal lobe)

Ray is the only one with cardiac disease. (frontal lobe)

Wendy is the only one with extremity nerve palsies. (parietal lobe)

Since I was only diagnosed less than a year ago, my ER visits would be an average of 1 per year thus far.  Also, I am thankful that other prescription drugs to try and treat the thickened dura have not been approached.  

Ray had stopped trying to do much physically, and then of course that causes depression and other medical issues.  Wendy and I have been cautiously exercising.  The big concern is our dizziness, so we both have been using the gym cycle to maintain blood flow, heart rate, and muscle improvement.  So, yes of course we wanted Ray to get there!  He is now becoming more active and actually is feeling much better.  He also sees a Psychologist now.

SHARED CONCERNS:

All of us have experienced the fact that many Dr's are wary of our IHCP.  All three of us have been somewhat "shunned" due to the unknown process of treatment.

Ray and Wendy have both actually been told by a Dr.,no involvement was wanted.  Currently, Wendy seems to be the most undirected of all of us. Most of her Dr. visits at a well known medical clinic are 6 months in waiting. In the meantime she ends up in the ER.  Ray was in that venue until, the Dr's decided on a 2 - 3 month appointment time after his last ER visit, at a different well known medical clinic.

I have actually had 2 Dr's reply to me when there is a discussion of IHCP; "I am only a Country Dr.".  When I told my neurologist this, I said, "What is that? A veterinarian???"  He could not stop laughing! ( for me, it has been tough enough with Celiac Disease)

The last time Ray was in the hospital, his wife was so upset, she called me.  She asked me to speak with the intern. He was quite nice with me...said a few things...asked a few things...and then he mentioned he was ordering the MRI.  I asked if he was doing this with contrast, he said "no"; so then I told him I did know that the gadolinium contrast is what would show him the full effect of the thickened dura. (hmmm...thanking my Dr. Hanel for this info) So, at least there was one help.  The best was talking to Debbie and getting her calmed down.  

So, we three are praying together!  He is with us!