THE HEALING OF TEARS....

TEARS...a healing process as well....
I have been reading John Chapter 4 in the Holy Bible...here is my prayer through my assignment of PTL.  I cried through this prayer...

Dear God, how I long to be a true disciple of yours. I wish that I could have followed you around Galilee and into Cana. Would I have struggled with disbelief as I watched you help people? Sometimes I feel like the Samaritan woman, unworthy and not wanting anyone to know the truth about my past. Yet, I find incredible hope in these verses. You knew that woman! You knew she had five husbands and yet you offered her living water. I have received this living water you have offered. The world and its "greed" have left me thirsty for something it cannot give. I come to you this morning, still thirsty. Fill me up with YOU. Teach me what it means to worship YOU in Spirit and Truth. Open my eyes to the harvest that is all around and cause me to get busy for YOU. Use my words and my life to point others to YOU. As I depart from our special time together, I want to take YOU at your word. Only YOU can make that happen. In my weak faith, hold my hand and show me the way. In Jesus name, Amen.

Before my appointment May 28, 2014 with my Infectious Disease Dr., I already knew.....the infection was coming back causing problems.

About three days before my appointment, I started to notice the "prickling" in the left side of my head, and then some pain, actually towards the back of my head.  My speech became more difficult and my word retrieval as well.  Both eyes started feeling more sensitive to light.  My husband was on top of this as well.

I was prepared...or so I thought.  When my Dr. actually said this, I felt numb.  I expressed many "ways" I had tried to "help" myself through diet, exercise, cleaning with bleach, washing constantly....he stopped me and drew a picture.  He drew the brain cells and then dots in between them; through them, and he said, "This is not your fault, there was no way for you to stop this.  Bacteria grows rapidly, and we need to stop it from more growth with the antibiotic."  I asked him if it was from my osteomyelitis, and he said "yes".

With the "Fantastic Plan" ahead, to see my new grand-daughter, I asked him if I could still travel.  Also, I questioned if I could transfer this bacteria to anyone in anyway!  He said, yes to travel and no to being contagious.  Whew!

He also said I needed blood work before this next 2 month regimen.  So while waiting at Quest, I pulled out my IPAD and started reading my Bible.  I am reading all of St. John through a special "assignment" my cousin, Kent shared with me.

I found the following information in a search of "idiopathic" diseases.  We are also called "orphans"...but I know that HE knows me....and I will never be an orphan.
RARE DISEASES AND SUPPORT

I actually sent PCORI an e-mail and they responded:

Emma Djabali (PCORI Helpdesk) May 27 01:51 PM Dear Joan: Thank you for your email. We appreciate your input and suggestions. We will share them with the appropriate staff. Our Advisory panels consider a large range of questions for future research. Your comments align well with our mission and particularly with the efforts of our Advisory Panel on Rare Disease. We wish you well and look forward to having additional funded research that can help you and others in your health care journey. Best, Thank you, Emma Djabali Advisory Panel Coordinator Patient-Centered Outcomes Research Institute (PCORI) 1828 L Street, NW 9th Floor, Washington, DC 20036 www.pcori.org | @PCORI | advisorypanels@pcori.org | (202) 827-7700 Stay current with our email updates: www.pcori.org/subscribe

Pffrjoan52 May 23 01:04 PM Dear Advisory Panel, It has taken some time to find PCORI. I am a patient who has been diagnosed with Chronic Idiopathic Hypertrophic Cranial Pachymeningitis. This diagnosis came through the Mayo Clinic in Jacksonville,FL after a brain tumor was resected 11/20/13. Notable on this is; I also have Celiac Disease. My epileptic seizures and aphasia are what prompted my husband to take me to the ER last fall. Since then, I have encountered this new journey with many tests, and changes in my life style. Again, on March 25th, I was taken to the ER, this time with a brain infection, abscess and osteomyelitis of my left temporal bone. Another craniotomy was performed with my "bone flap" being discarded and the prompt 6 week treatment through a PIIC line of antibiotics. Another brain surgery will be required to replace the, "hole", left in my head at a later date. Given this short clip of history, I have found that the term in any "Idiopathic" disease causes many patients and their caregivers a great deal of "stress". It seems that ER visits are becoming a regularity more than the uncommon medical need. That being said, those in the Medical Professional venue are "puzzled" by my disease. Should I mention the increase of financial stress as well? Perhaps some sort of "compilation" the patient can carry on their Idiopathic disease would be helpful. And dare I say, anyone with an "idiopathic disease" should probably be recommended with a supporter or support group of some type. A support "option" would be favorable, but that is not even a medical process at this time. (I chose to look for this in my Specialty Nurse program offered by my insurance and found 2 others like me on Face Book) In my own case, I was finally able to obtain SS disability since I have been unable to return to the job I held. I cannot even think of applying for another one due to the "unknown", along with my current disabilities and future surgery. I am so thankful for this, since now it seems our medical bills are quadrupling over last years expenses... Hoping my ideas for those who face an "idiopathic disease" is helpful. I noticed that you have listed one on your network, Idiopathic Pulmonary Fibrosis. Sincerely, Joan Pfeiffer I am not sure if this e-mail will improve anything for those who share this type of journey, but I am praying God will let the proper and His selected "one" to understand the need. On Thursday, May 29,2014 I was able to watch my great nephew, Tyler, graduate from high school.  I knew that my deceased brother, William, his grand-father, would be so proud!    I gave Tyler a special coin like the one my brother used to carry...I know at 18 years old, he probably will not understand the "meaning" in which it was given, but as he serves our country like his grand-father did....I pray he will. Later that evening, I was enjoying time with William's daughter, Tennille, his previous wife, Debbie, and Debbie's mother....all who knew him and loved him.  When they asked about my current medical issues.... for the first time around anyone....my tears started to flow...but in thankfulness...true thankfulness to, Tennille, who was able to take me to the Mayo Clinic..when I had no other way.  Thankful for a family who is so loving.  Thankful that HE always provides hope and faith to surround me! Tears...another unwritten prescription for healing!

JOURNEY MATTERS

"It is good to have an end to journey toward; but it is the journey that matters, in the end."  Ernest Hemingway

These days, I am so missing Dr. Hanel.  I wish I had been able to contact him when I needed the second craniotomy.  My situation was such an emergency; it would have been impossible. 

Today was probably the last appointment with my ENT.   

He rechecked both of my ears and said they looked fine.  He asked me about the on-going tinnitus, the echo's and my heart beat I hear every now and again... His total observation is that my Mastoid is not affecting this IHCP for now.

He suggested hearing aids to help my hearing issues and tinnitus, otherwise, he told me to call him, if I had any irregularities.  Actually, this is the exact same thing I heard before about my hearing.

So, that is one less Dr. I have to see now.  Which is good.  Next week, I have an appointment with my Infectious Disease, in Sarasota.  This is for follow-up and to see how I am healing.  He had told me that there would be no way to tell if my infection is coming back...it is "idiopathic".  Laughing on this one!

In the meantime, the promise of my new grand-daughter's arrival this week, is erupting the awesomeness of life itself!
Little Lucy has been a blessing along this whole journey.  Since the first day I was at the hospital on September 24, 2013.....this new little life has brought me strength!  My daughter, Jenn had just found out about her pregnancy at the same time I was admitted to the hospital.

4:40PM - LUCY has arrived!!  My new grand-daughter is with us!  8lbs 5oz, and 21 inches!  She and my daughter, Jenn, are doing fine!  Always amazed...never surprised!

Through my continual search of information pertaining to IHCP, I found that there are several medical researches towards "rare" diseases in America.  One is Scripps, and another is NIH.  They actually call these "rarities", Orphan Diseases.  I have searched then for any pertaining to IHCP...and at this time, there are none active.

I shared this new information with Ray and Debbie.  Ray also has IHCP, and was diagnosed over 3 years ago.  We would really like to be in touch with more people who have this disease.  It is difficult...there are so few of us...many people want to remain "unknown" idiopathics.  We remain observant of their privacy.

Prayers are indwelling my heart... for our family and friends consistently.  Healing is an ongoing "inside/out" event.

Lamentations 3:21-23 NLT
"The faithful love of the Lord never ends! ...Great is His faithfulness; His mercies begin afresh each morning."


   

IDIOPATHIC? NO, NOT REALLY ...JESUS SAID,"VIA,VERITAS,VITA"

Yes, I am forwarding on.  My life is "what it is" and I am beginning to think that His Purpose is to share this journey with those who need it.

I was called by the nurse to come in the lab at approximately 7:20am.  She was a very kind lady and looked to be about 15 years younger than I.  She asked me some questions about my PIIC line and my surgeries.  And while we were talking, she suddenly said  "My parents are so ill, I am a nurse, I should be able to fix them!"  Her eyes were full of tears!  I started to share with her a little more, she wondered how concerned I was about my life and the diagnosis.  My response was that we never know when our "last day here on earth" will be.  Each day is a gift!

 I shared with her the death of my mother by suicide, unexpectedly when I was 9 years old, the sudden death of my father, also unexpectedly in a car accident, the additional sudden deaths of my sister, my brother, and my daughter.  And then I told her about my NDE experience in Heaven where I got to see all of them, but was told, I had to come back.  It was not my time!  She shared a similar story, a dear friend of hers had shared, that sounded very much the same.

Then I told her, about Jesus, and why He loved us so much he died for us, so that when we die here on earth, this is not all there is....we have an Eternal Home to go to.  All He asks is that we accept Him for His gift of eternal life.  Love Him and honor Him in sharing that Love with others.  We prayed together.  As her tears fell so heavily, she looked at me and said, "I was meant to see you today".  I said, "we" were meant to see each other that day!  His Purpose, through all of these medical issues, even if it is just one person to help along the way....it is so worth every day of pain or suffering that I have experienced.  (but I must be honest, I have had very little pain or suffering)

We met with the Dr.  He had received all of the new MRI's, CT's, and reports from Sarasota. My speech sounded so much better to him.  He spoke with my husband as well asking questions about my last craniotomy.  In review, this should be my last appointment for blood work to determine any other type of disease other than IHCP.  His remarks were, it will probably remain "idiopathic".  Although, I have not received all of the information from this last testing as yet, I recalled what Dr. Hanel had said to me before.  His comment was "we may never know what this is".

I am feeling more comfortable in this rare "idiopathic" disease.  The comfort is actually understanding His Purpose for all of this.  I had studied to be a missionary in Bible College right after high school.  I made some choices that changed so much of my journey.  Looking back, He still used those times to teach me and strengthen me along the way to "now".  This is where He wants me to be!  I am sure of that.  Whatever limitations this disease has in store, I will gratefully deal with them.  I know He is guiding me through it!

Yesterday, was my appointment with Neurologist, Dr. Patrick Madden.  This doctor is so "up to date" when it comes to process!  He was at the hospital for me on this last craniotomy.  He has watched and cared for my well-being continually.  I have learned there are a great deal of "unknowns" out there...and many others are dealing with them as well.  This is not the only "idiopathic" form of disease.  I will continue to keep myself apprised in the "knowing of Jesus", He is omniscient! (He is all knowing!!)

Status at this time:
1.Speech is much better, aphasia is not as strong/word retrieval issues still remain
2.Hearing in left ear is better, however the constant tinnitus remains continually in both ears.
3. Incision is healing very well
4. Migraine/Headaches now and again, take Advil or Motrin OTC 
    (the natural treatment is Vit B6 and Ginger...very helpful!)
5. Double vision remains "vertically " .
6. Sporadic "sinus bradycardia" upon tests
7. IgM remains abnormally high
8. AST , Uric Acid Serum,Mean Corpuscular Hgb Conentration,and Alpha 2 Globulin still slightly elevated
9. Energy level needs some work...will start to exercise at the gym again, only on the cycle to remain steady
10.Keppra is still 500mg's twice per day (no further seizures for over 6 months, permitting me to drive again)
11.Light continues to be bothersome, especially lights at night with the double vision is bad, so will not drive at night time.
12.Noticeable extreme dizziness when leaning over or standing in one place 
13. BP=102/64, HR=53
14.And of course I still treat my Celiac Disease with GF foods

After discussion and testing, Dr. Madden, gave me a copy of parts of his book he is writing. I am enthralled and can't wait to see more.  
I took one year of Latin in school, I thought I would bring words that Jesus said in that language.  "Via, Veritas, Vita"  (remember the V's in Latin are pronounced like W's)  John 14:6 Thomas said to Jesus, Lord, we do not know where you are going.  How can we know the way?  Jesus said to him; ("Via,Veritas,Vita"); "I am the Way, and the Truth, and the Life..."   I am moving forward, knowing where He is!!