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!!

CURRENT PLANNING...MORE RESEARCH ON IHCP

First and Foremost, my Easter Sunday this year...was one of the most notable of my life!  Not only did we celebrate Jesus' Resurrection and God's wonderful gift of eternal life...but my daughter, Sherry's birthday was also on this day!  It was a tremendous time of family enjoyment! 

I still have 3 more weeks to complete the antibiotic feature of 3 IV infusions per day.  The medication of Cefazolin 2gm is inserted into each "grenade".  The process is easy, and the timing has not been a huge issue!  My Infectious Dr. stated, then we need to look for any obtrusion within 30 days...10% of the patients have a recurring issue within this time frame....if not then...then the 90 day process includes an additional 3%.  I asked how will we know?  What signs are there?  He answered saying nothing specific, and a CT or MRI will not help.   


I think this will be perfect timing for me to go and see my new grandchild, right after the completion of my antibiotic regime.  I should be well enough to enjoy the time with my family!   I should also be well enough to attend my great nephew's graduation in May.  The real tricky time will be in July.  I am supposed to attend my sister's wedding at that time and celebrate my oldest daughter's birthday....the wedding is out of state....the birthday is local.  Praying this infection does not reoccur.

There is a couple in Tennessee that I met through the support group on-line for all Neuro issues.  Yes, one other person I know in the world who is also dealing with IHCP.  God truly knew that I needed them, we have become very close.  Deb and Ray are about the same age as Bob and I.  Ray has the disease, and Deb is his caregiver spouse.  Not long after my last craniotomy, Deb called me from their ER in TN.  Ray had become disoriented and lethargic with an extremely high ALT/AST reading.  His blood pressure was extremely low as well.  So, Deb was talking with an intern and asked if I would also talk to him.  I tried to help with what little I know, and explained a few things I knew about the MRI and the dura.  Not sure how much I helped, but am sure that Deb needed me, and I was thankful to be available.  Ray is getting better.

It is April 28th, I met with my new neurosurgeon.  He checked the incision area said that it is healing well.  We talked about the process of the infection and treatment.  My neurosurgeon says they can do some blood work to follow the actual healing process. 



Everyday, I am so thankful!  God's blessings are extensive!

NEW PLANNING BEGINS TOWARDS THE "IDIOPATHIC" PROCESS...

Weekly now, I must go to see the Dr. in charge of my infection care.  The name of the infection that was confirmed through testing is Staphylococcus Aurea's.  Evidently this infection is not so rare, especially to craniotomy surgery.  This infection caused Osteomylitis to my temporal bone.

I met with my Infectious Dr. yesterday, he gave me the copies of the process from my hospital stay.  They test my blood work every week for progress.  The infection had compromised my temporal bone and of course affected the "bone flap" so much, it was discarded.  A part of my skull was discarded...so easily done.

Now, for the next 5 weeks, at least...I will be going to get tested and receive the new set of "grenades" to be applied to my PIIC line, 3 times per day.  It has to be every 8 hours, so I have chosen 5am, 1pm, and 9pm. This suits our (my hubby's and mine) daily schedule, since we are early morning people.

In my appointment with the infectious Dr. yesterday, he showed me the results of testing.  I have come at least from the "extreme" to "active" status. 

Here is a Medical Report about the process I am currently in:


Osteomyelitis Of The Skull
Osteomyelitis of the skull is a relatively rare disease. However, the proximity of the brain and the propensity to formation of epidural abscess necessitates prompt diagnosis and definitive early treatment. The skull infection originates from three key sources : (a) Paranasal sinusitis, mastoiditis, or otitis; by direct spread (b) haematogenous spread secondary to bacteraemia or fungaemia; (c) penetrating trauma or craniotomy.
War wounds tend to be more extensive and contaminated than civilian wounds, but principles of treatment are same .
Pain and swelling at the wound site should subside within a few days of closure.  Clinical manifestation of traumatic wound infection may become apparent within days to months after closure.When an infected scalp wound is suspected, treatment should be immediate.⁹   The wound is opened, all purulent material evacuated and suture materials removed, and devitalized tissue excised.  To ensure satisfactory recovery of the exposed skull, the wound should be closed loosely over a drain, which should be removed within 24 to 48 hours.  A single layered closure with an inert suture material, followed by a gentle compressive dressing to obliterate any dead space, are applied⁹.
Staphylococcus species are the commonest culprits, and appropriate systemic antibiotics should be started before culture result is obtained.  Persistence of infection after adequate treatment should suggest subgaleal spread, underlying osteomyelitis, or erroneous identification of the offending organism.  Signs of meningeal irritation, seizures, new focal neurologic deficits, or a decreased level of consciousness may signal penetration of the infection beyond the galea, which warrants a lumbar puncture and a further investigation including a contrast enhanced CT scan and MRI.
Craniotomy infections
Most recent studies report risk of infection of 1 to 3%, although re-operation on glioma patients is associated with rates as high as 11%.¹⁰   This increased risk may be attributed to reopening of surgical wounds and prior irradiation of the scalp.  Other factors contributing to the risk of infection after craniotomy include long duration of surgery, multiple incisions, placement of a drain , foreign body, the presence of a CSF leak, and immunosuppression of the patient.¹¹  Treatment  consists of systemic antibiotics and surgical débridement.  The risk of spreading superficial infection to the deeper layers after craniotomy is sufficiently serious to warrant antibiotic administration even before  cultures are obtained. Early detection of a craniotomy flap infection is important by looking out for the local and systemic signs of  infection. Once infection is identified, the wound must be opened.  All purulent material and visible sutures should be removed, followed by mechanical débridement and irrigation.  Dura should  not be violated unless subdural infection is suspected.  The standard technique is removal of an infected bone flap to prevent it being a nidus for chronic infection.  A subsequent cranioplasty is then done later.


My patient assessment is on the good side.  Almost two weeks since my last craniotomy, I have begun to feel a little more strength.  There are times though when my heart feels so slow, I become very lightheaded.  I continue to become dizzy when walking, so I am using the helps that a great PT gave me at the hospital.  He suggested I widen my gait, putting more space between the footage to attain a stronger foundation.

There are several appointments scheduled for this month and next month.  I need to remember the "full flavor" of my journey.  My family also has many blessings coming our way to include my daughter, Sherry's birthday which happens to be on Easter Sunday this year.  My great nephew, Tyler, graduates from high school at the end of May, which will bring a huge family gathering as well.  And then....my newest grand-daughter, Lucy, is due to be born at the end of May!  Such wonderful days ahead to keep the focus on "life" in the positive!

My family, friends, and neighbors have been so supportive to my latest needs.  How God answers prayers continually, is always amazing!  

So, in the new planning, more testing will begin with my new ENT Dr., my new neurosurgeon, the infectious Dr., support from my neurologist, and of course my hematologist.  Have you ever heard of "meet and greets"???  I pray before those times, knowing God has a reason for me to be there.  That, my friends, is in His Purpose.

MY SECOND CRANIOTOMY

I believe that things in life happen for a purpose.... 

There in my mind, is no coincidence.

Sunday, March 23, 2014
 I had noticed some swelling near my left ear for a couple of days, but seemed to be helped by Advil and said nothing.  My husband left early for a planned week business trip to his company's home office. He is my support, my best friend, he had already missed so much time helping me, he needed to attend this meeting.  And I kissed him goodbye.

Later that same day, my daughter, Sherry, and her family came to visit.  I showed the now enlarging bulge by my ear to my son-in-law.  I asked him to say nothing, but to please be aware I may need some help.  I did not want to trouble my daughter since she just had surgery a few days before to remove a soft ball sized ovarian cyst. She was also diagnosed with Grave's Disease.  She did not need additional drama.

I enjoyed this day with my children and grand-daughters and thanked God for His Blessings.  I pushed back the pain.

Monday, March 24, 2014
When I awoke I noticed even further swelling extending towards my jaw.  The pain was now a 6! I took more Advil and made a call to my former neurosurgeon's PA, Grace Bryan.  I explained the changes to Grace. She asked if I knew about Dr. Hanel's leaving, and I said yes, but had not yet received a letter of a new assigned Dr. (of course she could not tell me where Dr. Hanel was) She stated that if I came to Mayo, they would need to do another Cisternogram.  She suggested a "wait and see".  With possibly needing the most painful test again, I agreed.  I took more Advil and prayed.

Tuesday, March 25, 2014
More pain...more Advil...and now I called and left a message for my new neurologist in Sarasota for some help.  He returned my call around 4:30pm and gave me a name of a neurosurgeon in Sarasota to contact.  I tried, but the phones had been having issues in that area from a very bad storm, so I could not reach them.

I called my son-in-law and now, my daughter knew as well.  We were going to try and contact a neurosurgeon the next morning and I was staying overnight with them.  I couldn't make it.  Around 11:00pm the pain became so much more involved into my brain, the swelling increased, I had to go now.  I felt bad having to ask my daughter to take me to the ER, but she was strong and determined to get me there.

At the ER, they immediately took me in after the history and seeing the swelling.  A CT was performed, a call to the "on call" neurosurgeon was made, and a huge amount of purulent material was suctioned.  An infection had occurred. I was admitted, given pain medication and then I met the Dr.  He told me about the infection around the brain flap from the previous craniotomy and that surgery was needed.  I was hesitant, concerned about the Mayo Clinic response, wishing for my Dr. Hanel.    He left, and I prayed.

Wednesday, March 26, 2014
I received a call from Mayo Clinic.  I told them about my call to Grace, they said that was known. Then stated they would support the Dr.in Sarasota with any assistance needed, to have the surgery performed in Sarasota.  The advice was that I really needed to take action.  Still, I felt unsure. I contacted my neurologist, Dr. Madden, in Sarasota again and he said he would be used as a consult for the surgery.  He increased my Keppra to protect me from possible epileptic seizures.

I had so wanted my neurosurgeon, Dr. Hanel to do this...I just didn't know where he was yet. 

I called my husband and he made the arrangements to return for my surgery scheduled for Friday.

Thursday, March 27, 2014
This day was full of pain.  The Dr. arranged for his PA, to perform another suction of the infection fluid.  This helped immensely.  I could "breathe" again. My nurses were so wonderful and supportive.  Even my room mate patient, Robyn, and her family were helpful and wonderful believers of faith.  We shared many good moments together.

And then my best friend arrived!  My husband looked so tired, but his smile was ear to ear.  Thank God he arrived safely and now we could move on.

Friday, March 28, 2014
Many calls were made before my assigned time of surgery in the late afternoon.  Regretfully, I called my Mom (she is my step-mother, but has been my Mom for over 50 years, since my mother died when I was 9 years old..a blessing!) to let her know I would not be able to fly home (my hometown) as planned the next week.  I also had to call my brother, Brad, to cancel his flight arrangements for me at Easter. Disappointments have always been a weakness of mine, and I prayed for His forgiveness and peace to all.

The time had come, I was being moved to surgery.  The nurse, a man named Fred, greeted me.  He was a "kindred spirit"!  Always amazed!  He was also a Celiac, and assured me that no medicines under his watch would be full of any gluten. I laughed and felt comforted.  My anesthesiologist, came and listened to my request of no "push" on the IV too hurriedly.  This always caused so much pain and seemed to be the norm in some of my previous surgeries.  This time, I did not experience that pain as promised.

Awakening was difficult.  I was so sick. How could I have anything to throw up.  I had not eaten for over 20 hours, and yet, the nausea was constant. Perhaps I had swallowed some of the infection?  My ICU nurse, Erin, was amazing!  She knew just what would help, and the room stopped twirling around me.

Why is it, that we get so "nasty" from the drugs used at surgery?  I asked my husband later, my best friend, if I was at least nicer to him this time....and he said, no.  It hurts to know that I may have said something bad to him, even a fraction. 

Saturday, March 29, 2014
I had to leave ICU in the afternoon...Erin tried to keep me, but I was now too well to stay.  She was happy for my being so much better, but again she was another "kindred spirit".  It was hard to say goodbye.

I was moved to a private room this time.  And again, the nurses were the best!  I was allowed to sleep untroubled and only awakened once for vital signs and pain medication.  They were always surprised when I said no to percosette or oxycodone, but I told them it made me too ill.  So they would give me my Motrin and a little duladin in between.

My day was full of visits and some alone time.  The alone time let me continue to thank God in prayer for all of His Blessings, and to pray for others I knew were in need.  Prayer is the unwritten prescription that works best!

Sunday, March 30, 2014
The Dr. and his PA came to check on me.  We discussed the surgery, and made follow-up plans.

The testing on all of the infection came back as a Staph infection.  Although a very difficult infection to treat, there is a good plan.  I will need 3 doses of IV per day for the next 4 to 6 weeks.  That being said, I have a PIIC line in my right arm to follow the process.  It is also much easier to take blood tests along the way. (yes, the insertion of this line hurt!)

Dr. Madden came to see me after all my family and friends had left.  Late evening, he was off, but wanted to see how I was doing.   We spoke about my not having any additional seizures and now to go back to my normal dosage when I would be released the next day. 

Monday, March 31, 2014
I will be going home tonight after my last infusion of antibiotics.  I am feeling so well, and told the nurse if they had any filing or typing to do, let me know, I would love to help.  She laughed at me and said "she wished".

My hubby brought me home, and I slept soundly all night.

Tuesday, April 1, 2014
We had an appointment with the Infectious Disease Dr. who was handling my antibiotics and PIIC line.  Actually, it was to be a lesson on how to perform my own infusions. I passed with flying colors and came home with everything needed for a solid week.  Every week, I will be blood tested, and given more of the antibiotic for about 6 weeks duration.  

I spent my day at home comfortably.  Reading, writing, talking, and praying, but also resting.  Do not pick up anything that weighs more than 5lbs was ordered....really??? My doggie weighs 7.5 lbs, I have to pick her up once in awhile.  I will be careful.

It is good to be here.  Our Father will keep helping me get this "fixed".  The right places, the right people, the right time.  He has a purpose in all of this.  I have realized , He has needed me to meet some special people along this journey for His sake.

MY NEW LOCAL NEUROLOGIST - EXPLAINS MY MIGRAINES

Dr. Patrick J. Madden of Sarasota, Fl is my new neurologist, closer to home.  He is very informed about IHCP and Celiac Disease, which made me feel comfortable. Our appointment was over 2 hours.  He read my tumor biopsy with us and explained some information we had not understood before.  While reading he paused a moment and said, "This is not only rare, but very very rare."  Okay...I have never been known to do anything "half baked", guess this fits!

During my physical check, he noted that I had a migraine.  Really?  I had no idea.  I thought you had to have a very painful headache.  So, I learned something new:

Migraine^[1]

This common condition manifests itself in a number of ways, most of which involve some degree of ophthalmological problem.

• Visual aura - occurs in 99% of migraines with aura (typical and prolonged) as well as in retinal migraines which are characterised by recurrent monocular visual disturbance ± various types of scotoma. Visual disturbances are also the hallmark of ocular migraines or acephalic migraines (those without headaches).
• Diplopia - transient paralysis of III, IV or VI may occur during ophthalmoplegic migraines and may go on for days or weeks. These are rare and recovery is full.

I have vertical double vision. When tested at the Mayo Clinic by an opthamologist, he stated it is called monocular.  So, now I get it. One huge advantage to seeing double is, instead of seeing one star, I get to see two! 

When Dr. Madden had me perform the walk test, I got "dizzy".  He asked me if I felt the room was dizzy or if I was...I was.  He then said this is a type of vertigo and had me stop the test.  He asked me about my exercise program, and I told him I just use the cycle, so I will not fall if dizzy.  He liked that answer.

We talked about my speech issues.  At first he was not understanding what was causing my halting speech, and he said he guessed that is one reason my speech pathologist had me meet him.  We are still working on this.

So, about my flying in a plane.  Dr. Madden said, the cabin pressure could possibly cause a migraine.  The natural alleviation would include non-milk chocolate and coffee.  Need I say how much I love this type of prescription!

To assist my autoimmune issues with my speech, he has recommended Ginger tablets and Vitamin B6.  Also, I am to eat tuna twice a week for the Omega 3 build up.  I love natural dispenses, makes life much easier than all of the prescription drug side effects.  Besides, being a Celiac, I am accustomed to changing my diet appropriately.

Dr. Madden also sent me home with several "use at home" help sheets.  These include subjects, like Migrane 101, Sleep Sheets, and many on-line tools to use for Research.  Here are a couple:

www.achenet.org
www.headaches.org


I have lots to read up on!!

This is a very good place to be and I am so thankful.  I really miss not having Dr. Hanel and his nurse.  I know that Kim would have loved being a part of this with me too.