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!