Disblogged, MD

Our Children and our Family

2009-09-18T13:20:00.000-07:00

Thoughts for Persons with a Disability

If you are lucky enough to have been born into a loving family, you are still lucky if you have that rapport. God knows there are too many divided families in this lifetime, and you are really, seriously lucky. You need not read much further, other than to realize that you are truly rare. You care for your aging mother or father in your home, if need be...you never dump a beloved one into the raining darkness of the outside world. You give of yourself. More books need to be written by you, because the non-disabled simply are unable to fully grasp what it means to be Disabled. On top of that, consider having a "rare" (i.e., underdiagnosed, in my opinion) diagnosis like some of us do, a diagnosis which not only restricts our Activity, but one who leaves us physically incapable of having the body movement necessary to....brush your teeth.

Positive Side:

1. If you are lucky enough to have friends, they come over to your house (or send their children over to have a 'blast'; 1) because they know you well enough to know that you love children and are able to care for them; and 2) they are like family, with both parties displaying an unhesitating willingness to instantly add another child to the magical atmosphere of your home. And you and your child are not living in a jail house with extremely limited numbers of children in and out of the house. Unable to drive. Unable to get fully dressed and make meals, run errands. Go to the grocery store. Am I alone, or aren't there a Bunch of us, like...like.....out there....that...are "Half Alive"?

2. Before, when I was totally and completely bedridden 24/7, I felt "Half Alive" physically. Now, I have more 'better' days, I understand more, and I am sort of 'coming back to life'. This life is still being 'figured out', and with each slowly passing day, I thank God for the miracle of life. To breathe... Outside air.....But when I was physically "Half Alive", I did not have the awareness that for example, my hair needed combing, or that my shirt needed ironing, or that I only went outside and into the car for a few reasons. I lost my appetite and just forgot to eat. I lost weight, looked gray, and felt hollow. My reasons for leaving the house were depressing for anyone: MRI, doctor visit, pharmacy visit, MRI, MRI, physical therapy visit, doctor visit, doctor visit, MRI, visit the Post Office.

Gladly, I was blessed with Topya, a loyal and dependable person and Nanny who became a 'second mother' to my child and helped care for me. I could barely stay alive, and what life I had in me? I needed all my ATP for life itself, for breathing, for swallowing. No, I can't talk on the phone. It is too exhausting. No, I can't go out in the sun, but I'm going to get up, and then I'm going to sit up, stand up, and walk. Especially because they did not think I could do it. Just give me a fight. I'll grit my chin and prove you wrong...and if you don't think I can, then I may just find a place where I am treated like the human being that I am. Just because I have to lay down for half the day, or lay down to get some energy back, does not mean that you can go in to my closet and steal my clothes. A skirt gone here. A dress gone there. All my jewelry stolen. All my baby clothes stolen. A pair of True Religion jeans stolen. Who cares, all material possessions..may God bless whoever stole them and may everything go to good use. My treasures are stored up in Heaven, where the 'real' treasures and awards and banners and tributes to each one of our lives will be waiting for us.

Alive enough to know that people are mean and take advantage of you, but "Half Alive" enough to know you are not in a position to defend yourself.........Yet.

Weird place to be.

3. You could be "Half Alive" for other reasons: your body works, but you know you can't.....make it back home from the grocery store without being...sucked dry of ATP, stupid mitochondria, ill-defined neurological pathways, and misunderstood presentations. You're there, but no one really knows who you are, how this disease affects every day life, and what it is to go through something like this, having been a former chica doctor walking around in high heels and pearl necklaces in the ORs and the ICUs of pretty prestigious medical establishments.

Why are we just now learning about dysautonomia? How come I've never heard of it before, nor has it been listed in the differential diagnosis of syncope? Why? Why? If I had died, Dysautonomia would be less known. But I lived, and now I want everyone to know what it is, and I want to help The Cause for Dysautonomia and ME. I just can't believe that I'm one of the first persons to document the disease....it would have been better for me if this car accident had never happened....but God has a purpose and my purpose in life is to further these Causes.

Places that..some people are born into, the rest of us aren't. I wasn't, but I'm doing whatever I can writing the limitations, aggressiveness, possible latency, the idiosyncracies of the disease dysautonomia. Where is all the data? You can not sit there and tell me that it is a 'rare' disease, NOT if it is not even included in the differential diagnosis of syncope. It must NOT be rare. It must be more common than the medical community knows.

If dysautonomia is not rare, and more people have it than previously known, that tells me that there is an unnecessary morbidity and mortality for dysautonomia.

So how many of us have already died? How many of us had this disease and no one believed that we pass out when we stand up? That we end up on the floor if our brain gets no blood?

Dysautonomia must be more common that we think it is. This disease is partially due to a lack of medical education, a lack of Medical Board Examinations to ensure consistence throughout licensed doctors, and a lack of terminology that 'turns back' to the doctor in order to process what is actually happening.

I believe that what is actually happening is this: doctors don't believe the vague symptoms, and they do not know how to 'put them in a box' and diagnose dysautonomia. Increased awareness in the medical and general population is needed to save lives. Distraught lives that are a devastation, day by day. We're not complaining about 'missing' a tooth or having pain in an anatomical location. We're complaining about a known disease that seems to have been "missed".

Just ask. Ask everyone you know if they ever heard of 'dysautonomia' or 'ME'. Little by little, word of mouth by word of mouth, this word.....d..y..s..a..u..t..o..n..o...m..i..a.

Let's get it out there. People are suffering, and they are dying, and it is simply not necessary. Do you want us all to just die off and shut up? Then you'd never have to validate us and we would just think we are crazy. Don't you think the suicide rate in undiagnosed diseases like this ...could..possibly...lead to someone's committing suicide? We're not talking about apples and oranges here, nor are we near the birds and the bees. We're talking about life.

Life. Being able to live a life. Who says we are not worth diagnosing?

Last Note: there is no word that I know of, in the medical nomenclature, that describes the Syndrome that the doctor has when there IS something wrong with the patient and the doctor 'misses' it, won't validate it, it goes undiagnosed, and the patient suffers to death. Funny.

Perhaps there should be a 'catch-all' phrase for these doctors: Broken Patient:Physician Relationship. Who cares? Any good doctor. And any human being with compassion, in my mind.

Are we all just supposed to 'go away' and quit bugging the medical system? Or can't they just tell us that they hear us, do research to help us, and then come up with a systematic approach for data generation, analysis, and results. Simple. We are not going away. I'm leaving a trace of my life here. Someone else with dysautonomia or ME is leaving a trace of his life there. We're all working together toward the same goal: awareness and research.

I'm with you. Highest Personal Regards, Dr. M

Disclaimer: none of this is intended to be medical advice for any individual person of course. A doctor would have to see you, to examine you, etc. I wish I could fly around the world and have Clinics everywhere. God Bless Us All.

My Curriculum Vitae

2009-09-17T19:10:00.000-07:00

MARGARET A. FERRANTE, M.D.

September 2009

Education/Training

Activity/Degree Field of Study Institution Dates__

B.A. Biology CSU, Northridge 1980-85

N/A Medicine Oral Roberts University 1985-88

M.D. Medicine Univ. So. California 1989-90

Internship Medicine LAC-USC Med.Center 1990-91

Residency Anesthesiology LAC-USC Med.Center 1992-95

Residency Anesthesiology Stanford 1995-96

Fellowship Critical Care Stanford 1996-97

Professional Experience

Position Dates_____

Emergency Room Physician 10/92 - 12/95

Weed Army Hospital, Fort Irwin National Training Center; CA

Assistant Professor of Anesthesia, Anesthesia and Surgical Critical Care 03/97 - 04/01

Department of Anesthesia, University of Pennsylvania; PA

Acting Chief, Department of Anesthesia 05/01 - 09/01

Assistant Professor of Anesthesia

Department of Veteran’s Affairs Medical Center; Philadelphia, PA

University of Pennsylvania School of Medicine

Assistant Professor of Anesthesia and Radiology 09/01 – 06/02

Director, Surgical Intensive Care Unit 01/02 – 06/02

West Los Angeles Veteran’s Affairs Medical Center; CA

David Geffen School of Medicine at UCLA; CA

Pregnancy/Medical Leave 06/02-01/30/03

Staff Anesthesiologist 01/31/03-04/21/03

West Los Angeles Veteran’s Affairs Medical Center; CA

David Geffen School of Medicine at UCLA

Staff Anesthesiologis, Co-Director Surgical Intensive Care Unit Declined 06/04

Harbor/UCLA Medical Center Torrance, CA

Adjunct Assistant Professor July 2004-2005

Department of Anesthesiology, David Geffen School of Medicine at UCLA

Awards

National Foundation for Biochemical Research Award 1983

Outstanding Young Woman of America 1983

Sigma Xi Research Award 1984

Cum Laude 1985

Outstanding Student Award, CSUN President’s Club (1 out of 3) 1985

Full Scholarship, Oral Roberts Medical School 1986

Dean’s Research Fellowship, Oral Roberts Medical School 1987

Resident Finalist, Research Presentation, Calif. Soc. Anesthesiologists 1997

Certificate of Appreciation, Primary Care Simulator 2002

David Geffen School of Medicine at UCLA

Certificate of Appreciation, Update on Intensive Care Medicine2002

Seoul National University Hospital; Seoul, South Korea

Certificate of Appreciation, Primary Care Simulator, 2004

David Geffen School of Medicine at UCLA

Ferrante, Margaret

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Licensures

CA (G073982; 1991) PA (MD-061357-L; 1997) HI (MD-9349; 1997)

Certification

Diplomate, American Board of Anesthesiology 1997

Diplomate, Subspecialty Critical Care 1997

Diplomate, American Board of Forensic Medicine 1997

Maintenance of Certification in Anesthesiology (MOCA) 09/26/05

Certificate Number 28550, Expires 12/31/2015

Voluntary Board Exam

University/Dept/Hospital Activities

Ethics Committee, Hospital of the University of PA 1997-1999

Pharmacy and Therapeutics Committee, WLA VA 2002- April 2003

West LA Animal Research Committee, WLA VA 2003

PRIMER and ARENA Conference Attendee, San Diego April 2003

Research and Education Institute, Harbor-UCLA Medical Center

Activities in Professional Societies

American Medical Association, Member 1988-2002 American Society of Critical Care Anesthesiologists, 1997-1999

Research Committee

American College of Forensic Examiners, Member 1997-present

American Society of Anesthesiologists, Member 1995-2002

Society of Critical Care Medicine, Committee on Education 1997-99

Pennsylvania Society of Anesthesiologists, 1998-2001

Acute Care Medicine Committee

American Society of Regional Anesthesia, 2002-2003

Bonica Awards Committee

Dysautonomia Information Network-DINET, Member July 2009-present

American Board of Anesthesiology Activities

Written Board Exam Writer, Critical Care Board Exam 1998

Primary Teaching Activities

Anesthesia Residents Simulator 03/21/02, 04/19/02, 05/06/02

College of Applied Anatomy, UCLA Medical Students Simulator 07/11-12/02

College of Applied Anatomy, UCLA Medical Students Simulator 07/08/03, 07/10/03

Primary Care College, UCLA Medical Students Simulator 07/28-07/31/03

Applied Anatomy College, UCLA Medical Student Simulator 07/16/04

Primary Care College, UCLA Medical Student Simulator 07/30/04

Simulator Evaluations, Applied Anatomy College, UCLA 07/11/05

Applied Anatomy College, UCLA Medical Student Simulator 07/12/05

Simulator Evaluations, Applied Anatomy College, UCLA 07/12/05

Simulator Evaluations, Primary Care College, UCLA 07/14/05

Simulator Evaluations, Primary Care College, UCLA 07/15/05

Ferrante, Margaret

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Primary Teaching Activities (cont’d)

Primary Care College, UCLA Medical Student Simulator 07/13/05

Applied Anatomy College, UCLA Medical Student Simulator 07/14/05

Primary Care College, UCLA Medical Student Simulator 07/15/05

Invited Lectures

Title, Meeting, Location Date____

“The Diagnosis and Treatment of Pulmonary Hypertension”. 08/22/98

University of PA School of Nursing; Philadelphia, PA.

“Inhaled Nitric Oxide: Mechanism of Action & Uses in the ICU”. 10/16/98

Chestnut Hill Hospital; Chestnut Hill, PA.

“Identifying and Treating Acute Renal Failure”.

University of PA School of Nursing; Philadelphia, PA. 11/02/98

“Advanced Directives and Forgoing Life Support”. Bioethics and 01/30/99

Professionalism ID 390.University of PA School of Medicine.

“Diagnosis and Treatment of Acute Renal Failure”. 02/11/99

University of PA School of Nursing; Philadelphia, PA.

“ICU Monitoring”. International Trauma and Critical Care Anesthesiologists.03/27/99

Chicago, IL.

“Inhaled Nitric Oxide-Review and Current Uses”. Chestnut Hill Hospital; PA.06/22/99

“Pulmonary Hypertension: Diagnosis, Treatment, & Implications”. 12/16/99

University of PA School of Nursing; Philadelphia, PA.

“The Post-thoracotomy Patient Revisited”. University of PA Grand Rounds, 01/14/00

Department of Anesthesia; Philadelphia PA.

“Renal Failure: Prevention, Diagnosis and Treatment”. 02/03/00

University of PA School of Nursing; Philadelphia, PA.

“Ventilation/Perfusion: What is New?” Department of Anesthesia Grand 04/07/00

Rounds, Johannes-Gutenberg University; Mainz, Germany.

“Regional Assessment of V/Q Distribution in the Lung: A New Approach 04/07/00

by MRI and the MIGET)”. Department of Radiology Grand Rounds,

Johannes-Gutenberg University; Mainz, Germany.

"Hyperpolarized ³He: What It Is and Why We Care". Department of 05/18/00

Anesthesia Grand Rounds, University of Pennsylvania; Philadelphia, PA.

“What is New in V/Q Mismatch”. Department of Anesthesia Grand Rounds; 08/10/00

Cook County Hospital, Chicago, IL.

“What is New in V/Q?”. Department of Surgical Critical Care Grand Rounds 08/10/00

Cook County Hospital, Chicago, IL.

“The Diagnosis and Treatment of Pulmonary Hypertension”. 11/15/00

University of Penn School of Nursing; Philadelphia, PA.

“Renal Failure: Differential Diagnosis and Treatment”. 03/01/01

University of Penn School of Nursing; Philadelphia, PA.

“Preoperative Drugs: Use and Complications”. 12/13/01

Nursing Education, West LA Veteran’s Administration, CA.

“Fluids and Electrolytes”. 12/21/01

Nursing Education, West LA Veteran’s Administration, CA.

“Anesthesia Preoperative Assessment and Perioperative Complications”. 02/06/02

Department of Medicine Grand Rounds, West LA VA, CA.

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Invited Lectures, (Cont’d)

“Anesthesia Preoperative Assessment: The Influence of Primary Care”. 02/19/02

Department of Medicine Grand Rounds, Downtown LA VA, CA.“Learning Using Simulation:

Pushing the Experiential Envelope”. 5^th Annual 03/14/02

Bonica Anesthesia Conference; Harbor-UCLA; Maui, HI.

“Hyperpolarized ³Helium-MR Imaging: Clinical Applications”. 03/22/02

UCLA Department of Radiology; Los Angeles, CA.

“What’s New in V/Q? Intensive Care Update”. Seoul University Department 05/22/02

of Anesthesia Conference 2002; Seoul, South Korea.

“Intensive Care Unit: Hypovolemia”. UCLA Resident Lecture; CA. 06/10/02

“The Management of Hypotension” UCLA Medical Student Lecture; CA. 07/19/02

“General Anesthesia” in Spanish. Seventh grade class project, 11/06/02

Calvary Christian School; Pacific Palisades, CA.

“The Management of Hypotension: Trauma and ICU” UCLA Medical 07/07/03

Student Lecture, College of Applied Anatomy.

“Ventilation/Perfusion: What Anesthesiologists Have to do with it.” 08/06/03

Harbor/UCLA Department of Anesthesia Grand Rounds; Torrance, CA.

“Hyperpolarized 3He MRI: V/Q Assessment”;

Harbor/UCLA Pulmonary Research Conference; Torrance, CA. 11/19/03

“Hypotension: What do you do, Doctor?” Harbor/UCLA Medical Center 02/04/04

Grand Rounds; Torrance, CA.

“Your Patient is Hypotensive. What do you do, Doctor?; UCLA Medical Student 07/16/04

Lecture, Applied Anatomy College; Los Angeles, CA.

“Your Patient is Hypotensive, Doctor” UCLA Medical Student Lecture, 07/30/04

Primary Care College, Los Angeles, CA.

“Your Patient is Still Hypotensive, Doctor” UCLA Medical Student Lecture, 07/13/05

Applied Anatomy College, Los Angeles, CA.

“Your Patient is Really Hypotensive, Doctor” UCLA Medical Student Lecture, 07/15/05

Primary Care College, Los Angeles, CA.

“Critical Care in Pain”; An Intensive Review of the Specialty of Pain Medicine; 08/31/05

Danemiller Memorial Educational Foundation; Chicago, IL.

Invitation declined secondary to illness. “Pain in the ICU”; An Intensive Review

of the Specialty of Pain Medicine. 08/23/09

Research Manuscripts

Levy M, Aranda M, Zelman V, and Gianotta S. Rapid Communication: Propyl eneglycol toxicity following continuous etomidate infusion for the control of refractory cerebral edema. Neurosurgery 37(2):363-371, Aug 1999.

Aranda M, Mihm FG, Garrett S, Mihm MN, and Pearl RG. Continuous cardiac out put catheters: delay in in vitro response time after controlled flow changes. Anes Anesthesiology 89(6):1592-1595, Dec 1998.

Aranda M, Bradford KK, and Pearl RG. Continuous therapy with inhaled nitric oxide and intravenous vasodilators during experimental pulmonary hypertension. Anesth & Analg 89(1):152-8, Jul 1999.

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Research Manuscripts, (Cont’d)

Roberts DA, Rizi RR, Lipson DA, Aranda M, Baumgardner J, Bearn L, Hansen-Flaschen J, Gefter WB, Hatabu HH, Leigh JS, and Schnall MD. Detection and localization of pulmonary air leaks using laser-polarized Helium-3 MRI. Magn Reson in Med, 44:379-382, Sept 2000.

Ferrante FM, King LF, Roche EA, Kim PS, Aranda M, DeLaney LR, Mardini IA, Mannes AJ. Radiofrequency sacroiliac joint denervation for sacroiliac syndrome. Reg Anes and Pain Med, 26(2):137-142, 2001.

Roberts DA, Rizi RR, Lipson DA, Ferrante MA, Bearn L, Rolf L, Baumgardner J, Hatabu HH, Hansen-Flaschen J, Gefter WB, and MD Schnall. Dynamic observation of pulmonary perfusion using continuous arterial spin-labeling in a pig model. J Magn Reson Imag, 14(2):175-180, 2001.

Rizi RR, Saha PK, Wang B, Ferrante MA, Lipson D, Baumgardner JE, and DA Roberts. Co-registration of acquired MR ventilation and perfusion images – validation in a porcine model. Magn Reson Med, 49(1):13-8, 2003.

Ferrante MA, Asiaii A, Ishii M, RobertsDA, Edvinsson JM, JalaliA, Spector ZZ, Meisel F, and RR Rizi. An Evaluation of Pulmonary Atelectasis and its Re-expansion: Hyperpolarized ³HE MRI in the Yorkshire Pig. Acad Radiology, 10(11): 1283-90; 2003.

Markstaller K, Kauczor HU, Weiler N, Karmrodt J, Doebrich M, Ferrante MA, Thelen M, and B. Eberle. Lung density distribution in dynamic CT correlates with oxygenation in ventilated pigs with lavage ARDS. Br J of Anaesth, Nov; 91(5): 699-708; 2003.

Wang B, Saha PK, Udupa JK, Ferrante MA, Baumgardner JE, Roberts DA, and Rizi RR. 3D airway segmentation via hyperpolarized ³He gas MRI using scale-based fuzzy connectedness. Computerized Medical Imaging and Graphics 28; 77-86, 2004.

Conversion Disorder Mimicking Dejerine-Roussy Syndrome (Thalamic Stroke) After Spinal Cord Stimulation. Ferrante FM, Rana MV, and MA Ferrante. Reg Anes Pain Med, 29(2): 164-167, 2004.

Ferrante MA and DS Cannom. ‘Brittle’ Dysautonomia, JAMA 2009 Pending.

Ferrante MA and DS Cannom. PACE Essay on Dysautonomia, 2009 Pending.

Books and Theatre Manuscripts

Ferrante MA: Little Missy Two-Shoes Likes a Ladybug.

Self-published, Copyright August 2003.

Ferrante MA: No More Tears: A Physician Turned Patient Inspires Recovery.

Self-published, Copyright July 2008 to 2009.

Ferrante, MA. How to Try to Marry a Wonderful Husband. 2009 Pending.

Ferrante, MA. The Resurrection of the Elderly: The Sandwiched Generation’s Guide

to its Own Future. 2009 Pending.

Ferrante, MA. Movie Manuscript: No More Tears: A Physician-turned Patient Inspires Recovery. 2008, 2009

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Review Articles

Aranda M, and Pearl RG. Pharmacology and physiology of nitric oxide: understanding use in anesthesia and critical care medicine. Anesth Clin No Amer 16(1): 235-257, Mar 1998.

Aranda M, and Pearl RG. The biology of nitric oxide. Resp Care, 44(2) 156-168, Feb 1999.

Hanson CW III, and Aranda M. The impact of intensivists and ICU teams on outcomes. J Int Care Med 14:254-261, 1999.

Aranda M. Clinical Pearls II: an update on renal failure. ASCCA Interchange 11(3): 12-13, Sept 1999.

Aranda M, and Hanson CW III. Anesthetics, sedatives and paralytics: understanding their use in the intensive care unit. Surg Clin N Amer, 80 (3), 933-947, June 2000.

Aranda M and Pearl RG. Inhaled nitric oxide and pulmonary vasoreactivity. J Clin Monit and Comp 16 (5-6): 393-401, 2000.

Letters to the Editor

Aranda M, and Carden E. Letter to the Editor: Mechanical chin support during general anesthesia. Anesth & Analg 82(2): 431, Feb 1996.

Book Reviews

Aranda M. Book Review. Atlas of anesthesia volume V11: Pediatric Anesthesia. Reg Anesth Pain Med, 25(4): 432, July 2000.

Aranda M. Book Review. Complications in Anesthesia. Reg Anesth Pain Med, 25 (3):333-334, May-June 2000.

Aranda M. Book Review. Pain Management and Regional Anesthesia in Trauma. Reg Anesth Pain Med, 25 (3): 334, May-June 2000.

Aranda M. Book Review. Handbook of Difficult Airway Management. Reg Anesth & Pain Med 26(1) 87-88, January-February 2001.

Aranda M. Book Review. Anesthesia and Perioperative Complications. Reg Anesth & Pain Med 26 (3) 283-284, May-June 2001.

Scientific Abstracts

Jenkins, D, Reilly P, Anderson III H, Deutschman C, Aranda M, Hanson CW III, Taylor M, Alavi A, Schwab CW. Minimizing medical failure in a potential organ donor population. Crit Care Med 26:1(Suppl):378, Jan 1998.

Aranda M, Hanson CW III, O’Connor EM, and Price J. Nitric oxide use in intubated patients: demographics and outcome in a teaching hospital. Anesthesiology 89(3A):A417, Sep 1998.

Aranda M, Hanson CV III, Hertkorn CM, Khawam JG, and Ischiropoulos H. Nitric oxide and the generation of toxic metabolites in intensive care unit patients. Anesthesiology (ASCCA Suppl) 89:B19, Sep 1998.

Aranda M, Frasch HF, Meng QC, Marshall BE, O’Connor EM, and Hanson CW III. Characterization of the ‘rebound’ phenomenon after inhaled nitric oxide therapy. Crit Care Med, 27(1):A157, Jan 1999.

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Scientific Abstracts, (cont’d)

Aranda M, Kim P, Cordek FC, Fischer JI, Fernandes S, and Ferrante FM. Demographics and outcome of patient controlled epidural analgesia in patients after thoracic surgery. Crit Care Med 7(12)S:A407, Dec 1999.

Lipson DA, Aranda M, Roberts D, Palevsky HI, Schnall M, Taj S, Asiaii A, Hanson CW III, Marshall BE, Hansen-Flaschen J, Baumgardner J, Rizi R. Pneumothorax detected by novel MRI ventilation/perfusion scanning using non-radioactive hyperpolarized ³He and arterial spin-tagging. Crit Care Med 17(12)S:A358, Dec 1999.

Lipson DA, Aranda M, Roberts D, Palevsky HI, Schnall M, Bearn LM, Asiaii A, Hanson CW III, Marshall BE, Hansen-Flaschen J, Baumgardner J, Rizi Rahim. Correlation of the

multiple inert gas elimination technique with ventilation/perfusion scanning using non-radioactive hyperpolarized ³He and arterial spin tagging MRI. Crit Care Med 27(12)S:A281, Dec 1999.

Aranda M, Kim P, Kelley JG, Kelley ST, and Ferrante FM. Post-thoracotomy patient controlled epidural analgesia: should we ‘Get it Right’ the first time? Anesthesiology 93: 3A, Sept 2000.

Markstaller K, Eberle B, Kauczor H-U, Aranda M, Bink A, Weiler N. Lung density in dynamic CT correlates with oxygenation during pressure-controlled ventilation of pigs with lavage-ARDS. Anesthesiology Suppl. Sept. 2000, B19.

Aranda M, Rizi R, Baumgardner JE, Bearn LM, Pourdehnad M, Gefter W, Schnall M, Marshall BE. The development of novel MRI techniques: comparison with standard methods. Anesthesiology Suppl. Sept. 2000, B22.

Aranda M, Rizzi R, Hatabu H, Yamamoto A, Baumgardner JE: The development of novel magnetic resonance imaging in the normal porcine lung: comparison with standard methods. Anesthesiology Sept 2000, 93: 3A.

Aranda M, Bouchard LS, Rizi R, Asaii A, Fertikh M, Schnall MD, Warren WS. MRI detection of cerebral perfusion and oxygenation changes in pig brain using intermolecular multiple-quantum coherences. Magnetic Resonance in Medicine, April 2001.

RR Rizi, Baumgardner JE, Saha PE, Aranda M, Asaii A, Frazer M, Roberts DA, Schnall MD, and JS Leigh. Regional lung compliance by hyperpolarized ³Helium magnetic resonance imaging. International Society for Magnetic Resonance in Medicine, Ninth Scientific Meeting, Glasgow, Scotland, UK; 2001, A-944.

Aranda M, Bouchard LS, Rizi RR, Asaii A, Fertikh M, Schnall MD and WS. Warren. MRI detection of cerebral perfusion and oxygenation changes in pig brain using intermolecular multiple-quantum coherences. International Society for Magnetic Resonance in Medicine, Ninth Scientific Meeting, Glasgow, Scotland, UK; 2001, A-1491.

Aranda M, Rizi RR, Roberts DA, Asaii A, and Schnall MD. Atelectasis: A novel evaluation by hyperpolarized ³Helium magnetic resonance imaging. Anesthesiology Suppl 95;A1314, 2001.

Aranda M, Meisel F, Choudhury N, and Ferrante FM. High or low dose epidural fentanyl for postthoracotomy pain: which is better? Anesthesiology Suppl 2001, 95;A833.

Aranda M, Meisel F, Bearn L, Rickel K, and Ferrante FM. The effect of ethnicity on the treatment of low back pain. Selected for Press Release and ASA AudioLine Radio Interview, 2001. Anesthesiology Suppl, 95; A-816.

RR Rizi , D. A. Roberts, P. K. Saha, Aranda, M, J. Baumgardner, M. Ishii, W. Gefter, M. D. Schnall, John S. Leigh. Atelectasis: A useful evaluation by hyperpolarized ³Helium magnetic resonance imaging. International Society for Magnetic Resonance in Medicine, Tenth Scientific Meeting, Honolulu, Hawaii; 2002; A-92.

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Scientific Abstracts, (cont’d)

Ferrante, MA, Meisel F, Markstaller K, and Rizi RR. Experimental pulmonary hypertension: assessment by hyperpolarized ³Helium and gadolinium magnetic resonance imaging. Anesthesiology Suppl. Oct 2002, A-1312.

Ferrante, MA, Meisel F, Markstaller K, and Rizi RR. Experimental pulmonary hypertension: assessment by HP- ³Helium and gadolinium MRI. International Society for Magnetic Resonance in Medicine, Toronto, Canada Jul 2003.

Ferrante, MA, Mathew B, Meisel F, Bearn L, and Ferrante FM. Access to Health Care for Low Back Pain: Is Ethnicity a Consideration? American Society of Anesthesiologists, Category Rank: Number 1. Anesthesiology Suppl Oct 2003, A-976.

Ko WM, Ferrante, MA, Hayreh B, and Ferrante FM. Ethnicity and the Management of Chronic Low Back Pain. Accepted, American Society of Anesthesiologists, Oct 2004.

Ferrante, MA, Shrager J, Rizi RR, Ishii M, and Spector ZZ. Alveolar Ventilation in the Rat Lung: Quantitative and Regional Assessment with Hyperpolarized ³Helium MRI. Poster Discussion, American Society of Anesthesiologists, Oct 25, 2004.

Ferrante, MA, Fischer MC, Spector ZZ, Ishii M, and Rizi RR. Hyperpolarized 3Helium MRI in the Normal Mouse: Quantitative and Regional Assessment. Poster Discussion, American Society of Anesthesiologists, Oct 25, 2004.

Ferrante, MA, Ishii M, Han J, Yu J, and Rizi RR. Assessment of Experimental Pulmonary Embolism by Glass Beads in the Pig: Hyperpolarized ³Helium MRI. Poster Discussion, American Society of Anesthesiologists, Oct 25, 2004.

Webpages, TV Clips, News Listings: Hypotension and Dysautonomia

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/primcare/foundations.htm Lecture: “The Management of Hypotension. The Patient’s Blood Pressure is Still Low”. David Geffen School of Medicine at UCLA; UCLA Primary Care Foundations. July, 2002.

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/primcare/foundations.htm Lecture: “The Management of Hypotension. What do you do, doctor?”. David Geffen School of Medicine at UCLA; UCLA Primary Care Foundations. July, 2002.

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/acutecare/Docs/ACCHypotensionLecture_0703.pdf. Lecture: “The Treatment of Hypotension”. David Geffen School of Medicine at UCLA; UCLA Acute Care Foundations, July 2003.

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/primcare/foundations.htm Lecture: “Your Patient is Hypotensive Again, Doctor! He’s Still Hypotensive!” David Geffen School of Medicine at UCLA; UCLA Primary Care Foundations, July 2004.

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/acutecare/Docs/ACCHypotensionLecture_0704.pdf. Lecture: “Sorry to Page You. The Blood Pressure is Still Low”

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/acutecare/Docs/ACCHypotensionLecture_0702_.pdf. Lecture: “Your Patient is Hypotensive Again, Doctor!” David Geffen School of Medicine at UCLA; UCLA Acute Care Foundations, July 2005.

Ferrante, Margaret

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Webpages, TV Clips, News Listings: Hypotension and Dysautonomia (cont’d)

Ferrante MA, author. http://www.medsch.ucla.edu/curriculum/year4/primcare/foundations.htm Lecture: “Your Patient is Hypotensive Again, Doctor! What are you going to do?” David Geffen School of Medicine at UCLA; UCLA Acute Care Foundations, July 2005.

Ferrante MA and David S. Cannom featured: “Dysautonomia: Physician Attacked by Rare Condition”. Denise Dador reporting; Channel 7 KABC News TV clip, June 18, 2009: http//abclocal.go.com/kabc/video?id=6872819

Ferrante MA and David S. Cannom featured: Denise Dador Reporting; “Dysautonomia” shown on KABC Eyewitness News, June 18, 2009. http//www.goodsam.org/news/index.php

Ferrante MA, author. You Tube site: DysautonomiaMD; Started July 2009.

Ferrante MA, author: You Tube Video: “Dysautonomia”. http://www.youtube.com/user/DysautonomiaMD#play/uploads/7/-Blshb2RVMk

Ferrante MA and David S. Cannom featured: “Dysautonomia: Electrophysiologists Aids Patient With Uncommon Malfunction of the Central Nervous System”. Good Samaritan Hospital Quarterly Summary, Page 3, July 2009.

Ferrante MA. YouTube site: DysautonomiaMD; Dysautonomia. TV clip of KABC Eye Witness News, Channel 7. July 03, 2009.

Ferrante MA, author. YouTube site: DysautonomiaMD: DysautonomiaMD Finds the Rest of the World; http://www.youtube.com/watch?v=5r2_CsOhpHo July 3, 2009.

Ferrante MA, author. YouTube site: DysautonomiaMD: DysautonomiaMD: We Can Live from Bed; http://www.youtube.com/user/DysautonomiaMD#play/uploads/5/jy-E0bli_-I July 6, 2009.

Ferrante MA, author. Bedridden with Dysautonomia: http://www.youtube.com/user/DysautonomiaMD#play/uploads/4/YK8q4A0_yj0 July 9, 2009

Ferrante MA, author. YouTube site: DysautonomiaMD: I Got Out of Bed with Dysautonomia; http://www.youtube.com/user/DysautonomiaMD#play/uploads/3/4qRyZhbN_KM July 11, 2009.

Ferrante MA, Dirctor. YouTube site: DysautonomiaMD: Going on with Life; www.youtube.com/user/DysautonomiaMD#play/uploads/2/WWfPWRZUXo4July 18, 2009.

Ferrante MA. YouTube Statistics: 162 videos watched by me; 482 videos watched by others. Channel Views: 112. Videos uploaded: 8. Statistics copied from the YouTube site for DysautonomiaMD. Update = July 2009.

Ferrante, Margaret

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Webpages, TV Clips, News Listings: Hypotension and Dysautonomia (cont’d)

Ferrante MA. YouTube Statistics: 162 videos watched by me; 482 videos watched by others. Channel Views: 112. Videos uploaded: 8. Statistics copied from the YouTube site for DysautonomiaMD. Update = July 2009.

Ferrante MA, author. New Term: “Ferrante Syndrome” AKA “Doctor, help me! Doctor, help me! I’m not going crazy. Doctor, there is something wrong with my body! Don’t send me to a Nursing Home. I will die there.”

http//www.youtube.com/user/DysautonomiaMD#play/uploads/1/3sSqLdLO108 August 9, 2009.

Ferrante MA. “Ferrante Syndrome” First referral from Google Search for “Dysautonomia MD”. August 13, 2009.

Ferrante MA. “Ferrante Syndrome” first embedded on www.righthealth.com = August 27,2009.

Ferrante MA. “Ferrante Syndrome”: First YouTube referrals from www.facebook.com, and YouTube Homepage; August 10, 2009.

Ferrante MA. “Ferrante Syndrome”: First referral from YouTube search of “Dr. Ferrante”. August 26, 2009.

Ferrante MA. “Ferrante Syndrome”: First YouTube referral from YouTube search of ‘Dr. Ferrante Dysautonomia’. August 27, 2009.

Ferrante MA, author. New Term: “Aranda Syndrome” AKA “Attitude: I don’t care what they say; I’m getting better every day. What medicine is that for?”: http://www.youtube.com/user/DysautonomiaMD#play/uploads

DysautonomiaMD's webcam recorded Video - August 15, 2009, 07:42 PM. URL: http://www.youtube.com/watch?v=IhUBtmJtu-Y

Ferrante MA. “Aranda Syndrome” First referral from YouTube Homepage. August 15, 2009.

Ferrante MA. “Aranda Syndrome” First referral from “ME/CFS” and from YouTube search: “Dysautonomia MD”. August 18, 2009.

Ferrante MA. “Aranda Syndrome” First referral from YouTube search: “Dysautonomia”. August 19, 2009.

Ferrante MA. “Aranda Syndrome” First referral from YouTube search: “Dysautonomia”; and first referral from related video - My Top 8 Drugstore/Cheap Faves. August 20, 2009.

Ferrante MA.“Aranda Syndrome” First referral from YouTube: “/user/Dys; August 20, 2009.

Ferrante MA. “Aranda Syndrome”

Ferrante MA, author. Update on Dysautonomia. All YouTube “DysautonomiaMD” Video ‘hits’ = 361 videos watched by me; 1,260 videos watched by others. 12 Favorites, 18 Subscribers. August 30, 2009.

Ferrante, Margaret

Page 10

Self-Coined Terms:

“Ferrante Syndrome” = “Doctor, help me! Doctor, help me! I’m not going crazy. Doctor, there is something wrong with my body! Doctors can not figure me out, so it seems as if “Ferrante’s Back...Again.” Oh No! Its that “Ferrante Syndrome” lady. No one knows what is wrong with her. “Ferrante Syndrome = Don’t you believe what I am saying, doctor? Why don’t you listen to my heart with your stethoscope? Don’t send me to a Nursing Home, for we both know that I will die there. I am too young to die. Doctor, you do not have a Diagnosis. Therefore, you will not send me to a Nursing Home.”

Good thing I’m a doctor. Had to scratch and claw my way up to improved health care.

What happens to people who don’t know the ‘lingo’ doctor’s language? I said the Magic Words: “You do not have a diagnosis”. And I made her look into my eyes as I pleaded for my very life.

“Aranda Syndrome” = Fight. Fight to stay alive. Use your sensitivities to listen to that still, small voice who is telling you to do something. Fight to eat. Fight to eat right. Fight to get proper nutrition. Fight to prevent Drug:Drug reactions. Fight to keep what health you have.Move your body and even if bedridden, do exercises. Keep your health, with whatever limits you need, If you are not fighting to make your body stronger, this inertia will end today. What do I do? I can listen to the Voice of the Holy Spirit. So can you. Give your Sufferings back to Christ, who suffered the most torturous pathway to Death. It seems backwards, but Praise God in all your times of suffering. Sing in Praise.

Patent Pending:

Agent: Joseph Farzam, Esq.; Inventor: Margaret A. Ferrante, MD. USPTO Application No: 20080154636; Class 705-2 (USPTO). “Method and System for Operation of a Multifunctional Toyland.” http://www.freshpatents.com/Method-and-system-for-operation-of-a-multifunctional-toyland-dt20080626ptan20080154636.php?type=description

My Book: No More Tears

2009-09-17T18:56:00.000-07:00

This is not the usual kind of book. To those who have never been in a hospital, never been ill for months on end....I hope you never need to know the contents of this book.

For those of you who are sick, who have a loved one who is sick, or those of you young people who actually think about who is going to take care of you when you get older, this is for you. If people brush you off and treat you as invisible, and you wonder if you are going crazy, read on.

I wrote this book while I was hospitalized over and over again, spanning 2 years or so. Remember that I have a traumatic brain injury (TBI), so not everything is meant to make perfect sense. There will be errors, I will repeat myself. I will talk about one thing and then wander off and talk about something else. Then I forgot what I was first talking about (i.e., "derailing").

The book provides not only inspiration and a look at a dreaded disease whose name is unbeknowingst to most people, but it attempts to scientifically describe my abilities, my disabilities, my illness. In order for someone to.....get some help from it....find some comfort in knowing that others are miracles and have worked to be a Survivor. The Epilogue is gluing, and the Appendices in the back: useful to see how hospitals/nursing homes work, at least from my vantage.

The patient gets to ask questions. The patient must be treated with respect. Brace yourself for a refreshing and unusual scientific and inspirational message!

Friday, September 11, 2009

2009-09-12T01:09:00.000-07:00

With 9/11/2001 on everyone's mind out here, the sky was cloudy. But the air? It was unusually warm, as if someone turned the oven on too high. Visited my cardiologist today, who does not yet want me to perform cardiac activity. I get short of breathe (SOB) even if taking 1 flight of stairs, and I've learned how much my mind wants to scream when my body wants to move. But Can't.

Went out to dinner tonight, something that is an accomplishment for me. I liked it mostly because I could sit in the car without worrying about sun poisoning during the drive. I actually got to sit in the front seat, something I am unable to do on sunny days. It was good to laugh with family and friends.

Tomorrow, my mother is having a big day. Packing for an overseas trip, worrying about me and our child. Sweet. And unexpected. Maybe when some one is about to die, or is conscious of the beauty of each day: little smiles on someone's face, little cheers and love.

I've learned that the low blood volume associated with dysautonomia really has aggressive presenting symptoms, such that it bears another look. Older literature would have us eat an increased salty diet, so we can retain the water and get our blood thinned out a little so it could flow more freely, even to the tiniest capillaries in the brain. Since being off the iv, I drink perhaps 3-4 liters/day or more. I always try to come out 'positive' or 'equal' to my output. So you see that total body water and total body volume are important situations to first cure. Then perhaps one could stand up. Jobst Stockings? Lay in bed and point your leg up to the sky before putting the Jobst on. Then as you put the stockings on, you drain the blood from your legs. Point being that you should have an increased distribution of blood flow to the upper body, especially the brain. A little blood to the brain is always a good thing. The low blood volume status of those with dysautonomia, I think, is the first thing to maximally correct.

Sun poisoning today is so bad that my skin is crunchy and red. My face itches, like a thousand pins are pricking it from inside out. Lovely big, lips. No, they are not collagen implants. It's my anaphylactic reaction to the sun. The simple sun. Now my enemy, my wreaker of havoc.

Thank you God, for another day. Now, perhaps at 1 am, I may lay my head down to sleep. May God be with you and Bless you each and every day.

Slept All Day

2009-09-08T01:53:00.000-07:00

Holiday today. Almost 0200 in the am, and I can not sleep. I feel hot and perspiration dots the hairline of my forehead. I can feel my overly contractile heart beat too forcefully when I do too much. In the morning, I always walk with my head down and my arms hanging down to whatever ground is before me: the wooden floor with dog hair strewn about, the carpet with a sticky gum poking out in its red color for all to see. These are the little things, right? It's my world and I may as well tell you what it is like. Perhaps your world is like my world.

First of all, I have every rectangle and every crack in the walls memorized so that I always know where I am, even before I open my eyes. I have everything sketched in my mind, and I now use my 'medical school' photographic memory to locate lost items. Where's that..cell phone? Wait. Close my eyes, and point my head downwards. Concentrate. Then a hazy picture begins. I see the cell phone. It is on....a redwood chest...next to a magazine on Horses, downstairs in the living room. There. There it is. I'm working on my own memory, wishing I had Scrabble players to help me accommodate to life's games.

It was Labor Day today. I wish I had an American flag to post outside our home, as others do. Instead, I got in a 'I'm alive!' mood, and we made a small area totally clear for children to play. I know it was hard work, but the Cause was good, and we did it! Our children need to feel special. They need to feel special or else they do not incorporate bonds into their world. Children must know I am a 'safe' grownup, as random children would regularly walk up to me in a shopping mall, and ask me to tie their loose shoe laces. I wish I had 10 kids. I wish I could run an orphanage...don't laugh...every time a baby grows up, I want another one. Every time I see a newborn baby, I am reminded that God has his/her future at bay.

Blessings and holy warmth. May they surround your auroa, your persona who is a Survivor.

We made it through another day! My book is done! Let's see where we can go next! I know I'm in for a 'ride'. Hold on......keep hands and feet inside at all times (just like the rides at Disneyland, about an hour away).

Will try to make more scientific entries for other doctors, too. Today, my medical note is that I seem to undergo 'spurts' of energy wherein my body tells me, "No! No! No!" to things like standing up, sitting up at a breakfast table, making it to my window seat to see my garden, making it to take a nap without hurting someone's feelings. Trying to set the house together the way that I want to do it. Me. The mother of the house, the gut-wrencherer who scans the place, ensuring my landmarks are in place. Off to sleep. It's too late to be up.

Need energy/ATP for tomorrow. I have found that eating eggs for breakfast really helps me have more energy during the day. I believe there is a neurotransmitter precursor in eggs, providing choline to make acetylcholine, a ubiquitous (found everywhere) neurotransmitter used for muscle function, sensing things, regulating organs, etc. Eggs. That's my new thing, thanks to mother Renee who always makes me eat and whom I absolutely adore. I'm not telling you to eat eggs, but I'm telling you it seems to help me. Maybe it could help you, too, but always Disclaimer: seek medical care from a professional. My comments are not meant to be medical advice. But I'll tell you what I know, from the dysautonomia that I have, and the physician/scientist who I am.

Praying for you.

See My YouTube Site

2009-09-05T15:28:00.000-07:00

YouTube: DysautonomiaMD

Just posted new video yesterday. I'm sorry if it makes the bed-bound feel worse, because they can not get out of bed. Got grateful comments, as if no one's ever heard of Sensory Overload. Of course it exists. Hoping that my favorite, luminescentfeeling, stays with us. I look up to him as a Pioneer in making ME/dysautonomia and actually all the other related syndromes (related because it takes a rocket scientist to finally make a diagnosis). Keeps on trying. Keeps on pushing.

It is as if I feel one of us is slowly growing away from the world. If that happens, this whole effort will change for me. Why should solid citizens be denied health care and medications simply because they have a disease that medical science does not know well enough? The problem is NOT us patients. WE are the Survivors. Keep your 'Chin Up!' We are each doing the same ~ take one day at a time.

2009-09-03T22:41:00.000-07:00

September 3, 2009

So I ran to grab one of my books, and had a constant trickling of words going on in my head, over and over again. "She needs a book.....she needs a book.....she needs a .....book." My heart was in a panic, but I did not know why it was so.

In the slightly cramped restroom, I walked in. She looked up at me and I moved my body and my head...she was unable to look at me straight in the eyes. I made her. Then, our eyes locked and the Power of the Holy Spirit began to give me strings of words to say to her. They were mixed up a little, in my mind. But as I spoke them, I knew that every single word was chosen just to reach the right place in this person's heart.

Right ear, little whispers. I felt the venom in my spoken words, as they started flowing slowly and then more rapidly and emotionally towards the end. You won't believe this story.

I looked in her eyes and then I spoke. "You are very mixed up. You are mixed up, but you do know right from wrong. You are not in the right place that you should be right now, and where you are is bad for you. You are going away from God, not near Him. He wants you to know that you are never alone. He is always with you. Those times that you thought you were walking along the sand with God....and then during the rough, rough times of life, you know that there was only one set of footprints during those entire times." She looked at me as if she just got slapped in the face, and she humbled herself before God as huge, regular tears started pouring out of her eyes. My voice took on more authority as I said, "You are thinking of hurting yourself. God wants you to know that he does not want you to damage the Temple of the Holy Spirit. You are not to do anything to harm yourself." Then I got it. I asked of her, "Are you thinking of committing suicide?" Her eyes stared up to the heavens as she quietly replied, "Yes." As the Great Physician and Healer Jesus knows, I had to ask one more question, which is actually taught in medical school. I asked, "Do you have a plan for killing yourself?" I already knew that the answer was 'yes' as she confirmed the words of the Holy Spirit.

"You won't believe it. I have my friend's car in the parking space two blocks away. It is filled with all of my worldly belongings, each enclosed in a piece of luggage." She wiped both her eyes as she said, "Everything I own is packed in my car Right Now." I was silent as the Holy Spirit worked in her heart to disclose all her truths to me. Slowly, as if in a dream, she said,

"I was going to go home tonight and slash my wrists. I had it planned for tonight."

I thanked God that I had a sensitivity to her position on this day. She confirmed many things: that she had strayed from God, that she was tempted into becoming homosexual, and that one of her indirect supervisors was the one who was pushing her in this direction." She admitted to knowing better, to being brought up by her mother as a woman of God, and I could sense a deep longing for her to go back home.

We hugged and prayed together. I gave her an autographed copy of my book, as she eagerly promised to read it and reread it so that she may better know God's works in her life.

The next morning, I received the first 'thank you' letter I have ever received for saving a life. She left me a letter, written in small but firm printing that covered a page and a half. She was going to follow God, as there was no way that I would have known anything about her at all. She was a perfect stranger to me. I was a perfect stranger to her. Yet God's whispered words to me ~ they allowed a transformation and a direction and a confirmation that God wanted to be in her daily life.

Someday, I hope I have letters from many people whose lives I had the pleasure of touching. Why do I feel like the first doctor to have Dysautonomia? Maybe God allowed it to happen so I could be here right now. Telling you this story. He is calling out to You, and to me. We are to come together in Spirit and in truth. They will know we are Christians by our Love. Storing treasures in Heaven is what life is all about, not storing riches on Earth. That stranger that asked you for money this afternoon? Maybe it was an angel from God.

So many of you want more details; the above story has been changed to protect the identity of the person before God. Perhaps look inside your soul and pray that it becomes softened, especially as I confirm scientific mind-bogglers that can only leave one to conclude:

God is real.

God cares about you.

God cares just as much for you as He does for me.

Soften my heart.

Goodnight.

2009-09-02T22:22:00.000-07:00

MIRACLES: DO YOU BELIEVE?

I believe in miracles. As the Lord continues His ways, I met someone while I was trudging through some airport traffic and commotion. People going in every direction, my wheelchair going to the right, then to the left. Swoosh! Brain swoosh! Geez, I am not even on the plane yet and I feel like puking.

Enter Security. Got to talking to one lady there, and she was kind enough to leave me with her phone #. I called her yesterday, or maybe it was the day before. I had a story to tell her. It was actually an amazing story, but I paused as I realized the words that I would tell her.....I knew that they would change her life forever. Maybe she was hesitant, like most people are, just by talking to someone in a wheelchair. As we returned from our trip, I felt God was telling me, and is now telling me, to make sure that she knows this story.

It was late morning, and I had already awakened, prayed, and was putzing around a hotel room, when I caught a flash of a glance of the face of the person that was coming to clean my room. Right away, I felt a sense of panic and as I sit here typing with my fingers, her image easily comes to mind. It was as if I saw her in a flash of an instant, and her face was laid barren for me to see inside to her soul. I felt panic. Sheer panic. As if someone had just paged me to intubate a patient and I walked in on a bloody airway. I knew I was in for digging her out of a hole, and I knew that without hesitation, I would act and just let my body 'go along' the way that the Holy Spirit grabbed my soul like a magnet, and pulled me to her.

I was overflowing with words to say, some that perhaps did not make sense, some that did....I was not sure which were the 'touchy' spots of my words, and which were just 'regular' or 'predictable' questions or comments that I could mathematically say to a random person, and what the chances were that some x amount of what I was going to say was going to pierce her to the very heart and get her knees on the ground. God was welling up inside me, and I began to speak. I opened my mouth, and then immediately shut it. I remember this thought going through my mind: I need to give her a book. (No More Tears: A Physician-Turned Patient Inspires Recovery, written by me and I believe, with the leading and inspiration of the Holy Spirit inside of me). I need to give her a book. She needs a book. Where are my books? I need one now...

The rest of our meeting was unlike anything I have ever experienced before. God's power struck to the depths of my soul. The very depths where dark ideas and dark thoughts live until like maggots, they squirm to the surface and rear their ugly heads. I felt the devil in her soul. I felt the struggle she was having with her life. I sensed a real moment of 'truth or dare', and that God was pulling and pulling her toward Him, but that she was sidetracked. Very badly. One thing led to another, I felt, and now her life was up against the door, forced to attack because it was already backed up against a wall and unable to retreat.

Quickly, I reached over for one of my books. There was a small pile of them, as I brought a few extra copies on the trip with me. I ran, trying not to bump against the wall or fall down, and I found her in the bathroom. She was so clueless as to what was going to happen next.

I'll tell you about it tomorrow. I have to regroup my thoughts.

In Between Worlds

2009-08-24T23:24:00.000-07:00

As I continue to 'awaken', I find freshness in each day. I have family around me ~ family that seems to care. I have friends who help me to understand 'who' I used to be. I thought I could be President of DINET...seemed a nice dedication for serving people with Dysautonomia. No word back.

Thank you, some of my new Internet followers, for sticking this one out for me. I'm here to tell you to Keep Your Chin Up and to believe in miracles.

Still Emerging from the Clouds

2009-08-03T17:50:00.000-07:00

Went to Las Vegas for one night. Slept in the car there, slept there, and slept in the car all the way back. Spent mother:daughter time with another mother:daughter that was so simply patient, sweet, and loving. It was a weekend (really, a day) of affection, reflection, relaxation, and again, pondering. Who am I? Why did I get to live with this disease, when so many other people die from it? I am alive yet limited. I am with spirit, albeit squelched by the medical profession and the failures after failures to get my diagnosis right. So what is one to do? Say, "Goodbye old doctor, in with the new". Sometimes, you just have to doctor shop, like you're shopping for groceries. Keep going. Keep going. Statistically, you are bound to find a good doctor one day. Call your local hospital and perhaps ask to be seen by a cardiologist (I had a positive TILT test ~ we can talk about that later) or a neurologist. The best way to find out which doctor is the best? I think, but I'm not telling you to do it, that I have done this by calling up the Cardiac Telemetry Unit in the hospital, and asking THE NURSE or the CHARGE NURSE which doctor he/she likes the most. I spent ? 7 months 'doctor shopping'. It was exhausting, but the end result is that I am alive. Fight. Ask questions. If you have the symptoms of insomnia, difficulty getting to sleep, difficulty staying asleep, awakening fully before you've had enough sleep...there's the nausea, the vomiting, the walking sideways to get from point A to point B. Staring at the floor and noting all the scratches, dust, and dog hairs.

One day, I will describe the TILT test for you...it is a barbaric test, but I got my diagnosis from it...and was taken with much more seriousness than previously.

I would like to go to a psychiatric meeting in November. They are going to talk about psychological and physiological disturbances that cloud a physician's ability to make a diagnosis. They have several talks on Fibromyalgia, which is similar to dysautonomia in that the symptoms are chronic, vague, span multiple organ systems, and depression is ubiquitous. I would like to see an expose on Dysautonomia for their next meeting in 2010. In the meantime, I'd like to go and ask questions, and get this population of doctors and psychologists to verify the medical nature of our disease. Of course we're all depressed. No one believes us. There's nothing like feeling absolutely stupid and invisible in front of a doctor. Believe in yourself, listen to your body, and keep shopping. If you are from a country where there are no choices, I need to know your situation so that we can see what different people are going through, and the quagmire of questions can slowly move in the direction of becoming a solid foundation.

I just need an audience of people who will take my professional attitude and upbringing, my medical knowledge and experience, as well as my clinical information...and start putting it all together for all of us who suffer abnormal lives. No sun, no running. No typing on the computer for almost 3 years. Staying alive. Keeping yourself sane by living one day, one moment at a time. Surrounding yourself with positive people who understand you. You are not the only one, and neither am I. I just want to grab on to this disease...to grab it by the bullhorns...and to take it into the hearts, souls, and pockets of the medical profession. Thank God we are not crazy. But these doctors drive us practically crazy by not believing us. I don't know about you, but I am not a liar. Those that know me...they know that I have old-fashioned morals and I walk the straightest line I can. Also, I will scream for help if I need it. I don't care what any one thinks. If I don't scream for help, no one will hear me. And I wouldn't have you reading this with me.

DINET is still considering other applicants for the Presidency position. I'm not used to things moving so slowly. I feel like I have some energy now, and that I have to use it to do us all some good. POTS, ME, CFS...Dysautonomia...I'm going to look for a Hollywood star, or an Entertainment Band to 'host' Dysautonomia, just like Jerry Lewis did for muscular dystrophy. Any other ideas? There's no such thing as a wrong idea...we need new thoughts and new boxes to put these disorders in. They have to be connected, because they share the same symptoms.

I'll tell you one thing I did. I took orthostatic blood pressure plus heart rate findings, and wrote them down. Laying down, sitting, and then standing. 3 blood pressures, 3 heart rates. Based on the evaluation of these measurements and comparing the first laying down #s to the last standing up #s...I'm sure I can do my own statistical analysis (by asking my husband to do it). I'd like to present my findings as a Poster Abstract at a national meeting. What else can I do? I'll start from here...Nov 2009.

In the meantime, we ordered 200 more books for printing. There are many of you that would like to read this book, and know that you are not alone. Some people find comfort and healing in reading others' issues, talking to others, or writing. I was desperate as I wrote this book, going from hospital to hospital to doctor to doctor. I'm glad God has blessed me with getting better, and I thank all of my Team on YouTube for keeping in touch with me: YouTube site = DysautonomiaMD

Why did God save me and not someone else? Why did I have so many hard times in my life before this? Maybe God had it all planned out so that you and I could be reading this and at the same time, we can have hope for the future. LOL.

My Awakening

2009-07-26T18:18:00.000-07:00

As my head clears from the fog of the last 3 years, it seems that suddenly I have emerged from a bubble. I look outside at the skyscrapers, the trees, the ocean with new eyes. I look at my daughter, I talk to my son. And my husband who has been with me through all of this? It's like waking up to a new life, to a built-in family with built-in schedules, built-in employee caregivers and.....I wonder how much of this is My Will, and how much of it is really Me. My body locks me into my room to write and explain these things to you. I am bewildered.

I woke up early today to make it to a church send-off of the existing Pastor. I did my hair. It took me a long time and I had to sit down a few times, just to catch my breath. I thought, boy. I'll be ahead of schedule, have more time to get dressed. My Jobst stockings, prescription strength, squeeze my legs at 40 mm Hg to keep blood from pooling in my legs. It's over 100 degrees F some days, and wearing nylon stockings that are so tight that they squeeze my toes together? Not a fun combination. So I laid them out with my wardrobe for the day, and all of a sudden became very sleepy. I thought to myself, "I'll just sleep for 10 more minutes". I lay on the bed and could not move to get out of the bed.

I called a friend who is usually so supportive of me, and he wanted me to make sure a big Sunday Night Dinner was to be inhaled tonight. OK, OK, OK, I said. Then asked my caregiver what we're doing for dinner. Apparently it was already decided to get some chicken, so I don't really have to worry about every single decision around the house. It's like walking in the dark.

My brain tells me to get out of bed. My body tells me that it cannot move to get out of bed. My emotions tug one way and then another....I oscillate in two directions: 1) I would like to get out and enjoy my life but 2) my body simply will not let me do it. I could take this whirlwind and let it drive me crazy. I can feel that that is where this road leads, and that I must impose an intervention of some type. Some intervention that makes me feel fulfilled as a doctor, as a person. Something to show for my time and the passing time of my life.

My first book, "No More Tears: A Physician-turned Patient Inspires Recovery is being advertised for 4 weeks in a local paper. Once that is done, we can open a bank account for the book. Then the word, Dysautonomia, the syndrome and symptoms of Dysautonomia, and my experiences struggling to get a diagnosis and treatment. That is the word I want to tell the world. If you know someone with fainting, (syncope, in doctor talk), and they keep throwing up and getting headaches, perhaps the diagnosis of Dysautonomia should be entertained.

Please also visit my YouTube site, DysautonomiaMD and you can see my videos. I read and watch the videos of others inflicted with ME, POTs, and CFS and now I can identify my Dysautonomia symptoms with theirs. It is haunting. All of us in this world, and we can send a man to the moon. We could probably occupy an island, so that we could live in a custom-run world where there are no Tilt-a-Whirls to remind us of the things we can not do.

Self-pity. We turn it around and make it constructive. We become active about something that I am sure is killing thousands of people each year, this Dysautonomia and related syndromes. Whatever is being doing in this area, no matter how well-intended, the 'word' simply is not out there. The Emergency Room doctors don't learn about it (that I know of), and I've never met an ER Doctor that had ever heard of it. And I live in LA, CA. Big city, little knowledge. I say it is time to turn the tide and tell as many people as we can, about Dysautonomia.

'Dysautonomia' is a hard word, even for doctors to remember. When they didn't know what I had, they called it "Ferrante's Syndrome" because the doctors were simply stumped and stupified. Until I got to the right doctor. Perhaps 'doctor shopping' took a dozen or more MD visits...and the annoying feeling that I knew they did not believe my symptoms? Frustrated to high heavens. And they simply thought I was either 1) a histrionic female with hormones, 2) pretending, or 3) depressed/PTSD from the car accident.

I think my "Ferrante's Syndrome" made the doctors feel powerless to help me, hesitant to believe my symptoms, and slow to react. Until I found the right doctor. Thanks be to God. Can you help me by praying for us afflicted ones? Get the word out? Ask your doctor if she/he has ever heard of it. Refer them to my youTube site, dysautonomiaMD. I am here to help. God bless you,

Margaret A. Ferrante, MD

Triple Sleepover Sunday, June 28, 2009

2009-06-28T22:29:00.001-07:00

God woke me up this morning and asked me if I could help be a mother to three little girls. One day I am too tired to get out of bed. Another day I can say, "yes" or "no" to a new opportunity. What will this day be like? Too hot to go outside to church. Too hot to breathe in the hot air, as it sucks my water right out of my body.

God is in charge. I miss being a Mommy. He knows that. I know that. So, He sent me a little troop of kids to care for. I had a lovely day. Slept to make up for overnight not sleeping. Now I can't stop the letters from being italics. Now, I have a sore throat from talking to the girls so much. We watched them swim and I felt like a happy mother hen, making sure no one slipped to hit their head. Watching children have pure laughter. Listening to the conversations of children who didn't know that I was listening. Hearing chatter, chit chatter, and some pretty funny stuff.

I love tents in the living room, kids screaming in the pool, and looking around at what God has blessed us with. I was going to write today, but it is Sunday. A day of rest. I called my mother Renee and got more motherly advice out of pure love. I received messages from people I love, but was too tired to call any one back. I want to visit my mother, and my Maid of Honor's mother, too. Here we've been for three years, and sometimes I ponder the old days with much fondness.

Well, I have the best invitation of the day. I can sleep on the floor with my daughter, who misses me so much that she leaves her sleepover friends! :-)! I guess that if I can sleep in a hospital bed with people interrupting me with needles, cheery nurses at 3 am who have to get my blood pressure, and beeping noises all around me as I am on telemetry to keep a watch on my heart EKG patterns. Well, I will try. The little ones are begging for me now. It sure is good to be loved. I hope my daughter will love me forever. I know my son will, too. For now, that is all I need to know. Love.

Next time, I won't select any italics, because I do not know how to get out of it. It's not that user friendly. My daughter. My daughter. My daughter. I love her so much. One day, many years from now, she will remember sitting and reading this note, while her girlfriends are downstairs for the sleepover. She will remember how I wanted her friends to come to our house. She will remember the little things I did to make times memorable. Tents to sleep in. Blankets and pillows for everyone. Good night for now. My daughter calls me away and I must go.

June 26, 2009 Saturday in the Park

2009-06-26T22:05:00.000-07:00

...I think it was the 4th of July. (who sang this? Dad had just picked us up from the airport, orange sporty car and all). Ate a local country-style picnic a few nights ago. So many people did not recognize me. Others glanced and walked away. While one shook my hand, another cowered in the corner. I saw people I never thought that I would ever see again. It was really strange, like going back to another time and place. LLllloooooovvvvveeeeeddd seeing the toddlers dance, the spontaneity of the moments, and the simple people-watching. Since I spent so much time in bed for the last three years, and this was my first summer picnic in the same amount of time, I wanted to try to have fun.

Drudgery to be resting all day long, in bed so that I could stand after 6 pm. A little excited to go to this local picnic, but mostly because I get to go with my daughter in the car. Spend some time helping her eat. Spend some time looking for her, to make sure she is okay. Boy, if she ever got lost, I would be frantic. I wonder who, if anyone, would stop to notice that I had a problem and I needed help. Would you stop eating your dinner and look up to inquire about the problem specifically, even if the music stopped? Who would be in charge, in a moment's notice, of gathering a possie to send troops in every direction? Are we all duped into believing that 'everybody' is suddenly 'watching my child(ren)' for me, as if we are all brothers and sisters and no one would or could ever kidnap a child from this area? Perhaps people want to think that things are not too bad, and they fool themselves into thinking they can talk and watch a child at the same time. Or perhaps, as many people have seen, we reach a 'comfort' zone wherein our defenses are down and we are just not thinking straight. Oh well. One can fester about human nature and the state of inertness to disaster. We all want to be the one hero that paid attention and helped this poor lost child get back to her parents. It seemed like 100 people could have been that hero. I am disabled and I can not just get up from my chair and start running around to solve this problem. However, my eagle eyes absorbed human nature in action and the memory still haunts me. I know that each one of us, had we known, would have intervened to save a lost child. But as a group, we were ineffective and inefficient. Confusion abounded. Confusion and ignorance; it was not any one person's fault, yet it was everyone's fault. I love love love seeing the couple that intervened without thought, as if by simple kindness. He helped figure the whole thing out, while she worked in concert as if it was practiced over and over again. So natural. So nice to see. Aaahhhh. Humanity is not all lost.

2009-06-21T22:12:00.001-07:00

June 21, 2009 Sunday; Father's Day

Much has happened. PICC line fell out overnight; that was about 3 months ago, I think. I'm drinking 2-3 liters special water/day. I was on TV, the local KABC Channel 7 in Los Angeles. It was a profile on the rare syndrome of Dysautonomia and many people are happy that the story was done in a very fine manner. I finished writing the book I was putting together, finally. It was printed in time for me to present it to my Cardiologist. He is such a fine doctor. He saved my life, and every doctor that he referred me to? Believed me, helped me, made additional diagnoses, and are making my life easier to bear.

The suffering has lessened, and like a thorn in your finger, it feels so much better than before. But the wound is still there, and the wound still bleeds. Father's Day and I did not have the energy to get out of our bed. But the words of my Mother Renee rang over and over again in my head...get up! Get up! Put yourself together!

I braced myself, I held my breathe, and I sat up. I braced myself again, and forged a Path in my head. One that led to me to stand up. Eat something. Drink a liter of fluid. Jobst stockings followed by a cup of pills. At the Stanford Medical Alumni Family Retreat in South Lake Tahoe, this was my accomplishment. Instead of counting pill by pill and gagging on every swallow, my Caregiver Sofia and Edward taught me how to swallow a whole cup of pills. Now my distress over swallowing a lineup of pills, one at a time, is replaced by a mouthful of pills and a few swallows. Took me three years to get that this line of thinking was in my best interests. Now, it seems so silly that I did not learn how to do this years and years ago. Would have saved myself a lot of pent-up, bracing myself, gagging, getting pills stuck sideways in my esophagus, and general disgust at waking up and having a line of pills to swallow. Who wants to start their day that way?

No one. But God led me on this Path, and He is finding ways to bless our household. We mailed something 'media mail', which I recall as being very slow. Someone finally got our Christmas present in February. But no, God was able, and we asked Him to use His powers to push this mail forward to get to its destination, Grandma's house. She was leaving for a week, and we were able to get this media mail to her in just a few days. Just in time for her to have it with her as she reads on the plane, etc. It was yet another reminder of how much God is looking after us. How He works in our lives every day.

I've been talking to God a lot lately about being so ever-grateful for His Mercy. For letting me come back to Earth, to be a person of conviction that helps the lowly and the vulnerable. For letting me continue to be a mother and a wife. For letting me help people and serve as an inspiration, however possible. May He continue to use His Powers in our lives, so that you are reminded of God's reality day by day. If we walk by faith and not by sight, we are living in a different realm of this world. We are not invincible, but we are humble and we bow down at the name of Jesus Christ, son of Joseph and Lord of Lords.

"Holy, Holy, Holy....Lord God Almighty..." I try to sing this song at the top of my lungs every morning as I open our leaded glass windows to peer at nature below and beyond. Two important things I have recently learned: 1.) My suffering. I turn it over to Jesus, since He suffered for all. My sufferings seem so little, by comparison. But 2.) I sing Praises to God. The worse my situation is, the more I sing from the bowels of my gut and the crevices of my soul. Truly, truly, truly. This must be a reality, a bombshell of an epiphany. Dedicate my suffering to the Lord, and Praise Him in the same sentence. Sing to Him, who makes me whole.

Tomorrow, God will lead me to another day, to another path, to another person, or to another success. God is sending us people who are beloved and genuine, and He knows that all things will work together for good. For those who love the Lord, for those who are called according to his purpose.

I am grateful for another day, today. It was the first Father's Day that I could do much to help celebrate. Here we were this morning, with all the other 11 am last-minute shoppers, and we power-shopped. Then off to get new wireless router, then waited in the car for Father's Day cake to be picked up, then took a nap.

May God grant you the wisdom to believe in the depths of God's Word. May He show Himself to you daily, so that you know He is in your life, and that He is with you every step of the way. May He lead and guide your way, just as He does for all his Children. May we learn to love the way that Christ guided us: to be forgiving, loving, loyal, and an example that He may be ever so proud of us little human beings. Us and our big ideas. We get ourselves into more trouble than we get ourselves out of. That is why God is Our Father, Our Guardian, Our Protection.

Wednesday, May 18, 2009

2009-05-24T00:52:00.000-07:00

Too tired to mention much. My faith in humanity was restored once again today. The 'movement' has begun. Please pray with me and help me to gain physical strength. My head hurts like a pin is stuck in it. My retroorbital area (i.e., behind the eyes) bounded and bounded until I thought I was going to scream. Then there was not enough blood going to my brain, and I had an increase in the severity of my 'head rush'. It required that I leaned over with my head to my knees, in order to get blood to my brain. Nausea quickly ensued, and I could not brush my teeth. Gag reflex increased, so that suddenly my stomach would wretch and wretch whilst spasms of gut pain ensued.

I sang, "Holy, Holy, Holy" as loud as I could, and I vowed once again, not to let my disease take over my life. I sat in silence. Listening for God's voice. He confirmed His presence in our lives again today, and we are growing stronger in the Faith that God is in Charge.

My big epiphany: 1. Praise the Lord through all of your troubles, and take control of your body and mind. Give everything to God. 2. Dedicate your suffering unto Christ our Lord, who suffered for us all, and who we can only touch a smidge of suffering together with Him.

Once I offered my sufferings to the Sufferings of Christ, and Praised God in this light, my Faith burst like a flower seed. Whatever else, I learned the last two major steps to adversity and overcoming: dedication of my sufferings, and Highest Personal Praises to God.

2009-05-24T00:23:00.000-07:00

Sunday, May 23, 2009

Today is a day to remember.

I woke up late, then sat at our Master bedroom leaded glass window seat. The birds were singing, the air flowed through the windows and it was pleasant to feel a whisp of wind without having to actually be outside. My sun poisoning from the previous days was still wiping me out a little, and my chest rash became larger and then smaller. But all of that does not matter. I made it out to the local State Park and walked a little. The special part of it is that I walked with the little one and her first grade class. I went on my first Field Trip, thanks be to the Lord Jesus Christ. It was so worth it, to see the gleaming eyes of my daughter and have a few of her friends look at me gracefully. Like they were happy to see me. Especially off of my PICC line. I still drink liter after liter of non-free water, as if the iv was still in and my body depends on the hypervolemia to perfuse my head and allow my pituitary gland to be allowed blood and oxygen.

This morning, I blasted, "Holy, Holy, Holy" and "How Great Thou Art" out the Master windows. I lifted my eyes and my hands to the Lord, in pure praise of being alive and serving Him yet another day. What an honor, to live another day. To try to tell you quickly (in case there is no tomorrow) and concisely how the Glory of God has filled my soul.

I so do want to give back to you. Something that may help someone else another day. Here, I will describe the basilar-type migraine they have given me as a diagnosis. First, the retroorbital area (behind the eye) feels sharp twangs of pain. Hyperacousis worsens, leaving me paralyzed for a few seconds before I can comprehend what is going on next. Pounding in my right temple, along the termporal artery....if I lay my fingers gently on my skin, I can palpate every cm of artery and each bounding echo as my heart beats. If I can just relax my facial and neck muscles. If I can just sit up without getting a massive headrush. If I can just stand up and walk away from my chair. Instead, I bend over to keep blood to my head. It looks like I could touch my toes at the same time.

But how Great God is. In everything, I give him Praise. I am covered by the blood of Jesus and pour his blood of protection over my body. Like water out of a bucket. This morning, during my praise time, I had tears streaming down my eyes for the lives of my children. For my wonderful husband. For Sofia, the Nanny-turned Home Manager who is the second mother of my girl. For my wonderful son, whose pain I give up daily as an offering to God, and the hopes that he lives out some of his dreams.

I have to close my eyes to type. The eyeballs are simply getting too dry, and I do not want to dry out my eyeballs. So I close my etes and type at a snail's pace. I could not leave this day without telling you that again, I gave myself up to God as His Vessel, His Servant, His Follower and His Believer. I dedicated my sufferings to Jesus, our Lord.

I told God that I did not want anything from Him. That I threw myself at His Mercy and continue to live in it. I thought I had already done this when I was Saved. But I find myself dying to myself daily, surrendering myself to the Lord daily.

"In every situation, I Praise God for His love. The spoken words have creative building powers, much as God said, "Let there be light". My strength is in Jesus. My hope is in Jesus. My trust is in Jesus, and I will work to heighten us youngsters on growing up and becoming Elderly. It is a different world when you no longer drive, when you spend most of your gas money on doctor visits, physical therapy, and/or picking up pharmacy prescriptions. Thank you God for another day. Thank you also for tomorrow, that intangible miracle that happens every day.

Wednesday evening, May 11, 2009

2009-05-13T21:24:00.000-07:00

I finally fell into a deep sleep this afternoon, thanks to someone else. Perhaps 4 or 5 issues were before me, and I was not certain as to the solutions to the various problems. It had memories of a previous hospitalization that did bring me rage that I did not know I still had. Rage that this doctor did not believe in me, did not think I was serious about my symptoms. I confronted it, followed the rage to its origin, and was led to let go of the potential and natural self-destruction that could come if I internalized the rage. I was made to see this with great clarity, and it was an epiphany of grand proportions to me. Just gotta let things go. Can't change the world, can't change a mean person. Just pray for those who seemingly oppose you, that is what Jesus Christ taught. When was the last time I prayed for someone that I disliked and/or had no love for? It is a personal question, one to ask yourself and not one for me to tell you my answer.

I usually have more trouble sleeping at night than is usual. Sometimes gets to me, especially if I did not have a good night of sleep and I am trying to take a nap. Taking a nap can then become a problem, and I have found that this un-sleep pattern comes and goes in spurts of three or four days at a time. Too tired to take a nap, too tired to wake up when I am supposed to....although one could say that theoretically I do not need to wake up in the morning to care for our daughter and I could just sleep in every day. There were many days like this before pre-school, days where I was a stay at home mom with no one's schedule to follow but my own. Then came real life, and real life does not care if you are disabled.

There are not enough parking spots, enough short lengths between the car and the arrival zone. I believe that when we visited Orlando in the past, it was noted by me for a special reason. It seemed to be 'disability friendly'. Wheelchairs fit everywhere. Ladies with their baby strollers do, too. Does anyone think about going all around the place and showing establishments how they can improve things for the disabled? There must be a certain amount of disabled who suffer or die from being too far away from everything, with fatigue being the usual measurement. Bedridden is on one end, and you spend very much time there. I thought I would be dealing with these issues in my 70's, not my 40's.

The pool was warm as a bath, so I walked into it with my pajamas on. We had a PICC line Removal Pool Party, BBQ, and I think I did 4 laps with much effort. When I could feel heart palpitations, my face apparently turned white. My caregiver promptly pulled me out of the water and I willingly followed her advice. My head was not getting enough blood. Blood to the brain is a very good thing.

Off to sleep. Thank the Lord God for another day, another day. May He be praised in all that you do. I went to the same place earlier, at naptime, as I was last night in my dreams. Maybe my dreams will be different, though. I am lucky to be here, to breathe and to sleep without an iv tubing machine and its hum drum, drip, drop every few seconds. I'll take my bottle of water solution (i.e. not free water, or I would have to worry about hyponatremia, low blood sodium) and keep drinking bottle after bottle after bottle after bottle. I can not complain. God is taking me somewhere, but I do not know when. He is taking you somewhere, too, and you have to take notice of what God is doing in your life. Give Him the credit in your praises, and notice that God already is talking to you. It is whether you listen and then act, that God cares about. He desires that you come to know Him as your heavenly Father. One who loves and cares. One who suffers with our sufferings. Let us see what God brings us tomorrow: He is constantly making Himself known to us. Please pray that my re-growth of neurons, or the opening of single capillaries continues such that God continues to lead me to you, to have you listen to me and act on your faith. Goodnight.

2009-05-13T09:03:00.000-07:00

Just finished throwing up. First saliva, then acidic contents that were yellow. Green would be a color resembling or being actual bile. But no bile, thank God. My throat is still sore as I write this, but . . . This could be the last entry of my life. It could be the last time you read anything. This is true 100% of the time for 100% of every being on Earth to instantly die. Swine flu, fires all about, earthquakes and the shutterings of the Earth abound.

I am so sad to be missing an appointment with my psychiatrist. I think lots of people see psychiatrists but, as is the patient's right, they keep this information private. To everyone. Here, I could die with each second I am not drinking water. I live in this different, World it seems. One that is faithful in God, trusting in the road ahead (ok, not all the way 'trusting'), and having God show me His presence in my life. As He can do for you. The secret I learned just before my PICC line was pulled? Someone mentioned it to me yesterday, as she stopped to greet me. Once I reached the place where I dedicated all of my sufferings to the drop of the bucket that Christ suffered for me. Pain? OK. I give it to God, for the sufferings of His Son. Those sufferings pale in contrast to what Christ suffered for us. But I believe that for God, He accepts these sufferings as sacrifices for our sins, perhaps. Or perhaps we finally hit the point in our lives that we accept what we have, we accept the way that the world is, and we are puppets for God. Sometimes, I fast to feel closer to God. Jesus fasted, but I do not hear that fasting is spoken at the pulpit much. Which churches still do this? The Blessed-by-God Jewish peoples are still blessed by God and include fasting, as do some Muslim religions. What about Christianity?

=[]\ This is just to show you how a brain-injured person thinks. The order of things, the order of thoughts. Thoughts are categorized, and subthoughts are kept in waiting while the main subject is being told. I know that I am not telling the medical community, nor the general public, anything new. This has already been described by pioneers of great repute. However, I am a doctor and a writer.

And a patient and a physical body with anatomical and physiological disorders that are unusual, rare, and all in the same person. Dysautonomia, traumatic brain injury, Mal de Debarquement Syndrome, neurogenic bladder, status post (s/p) vertebral artery dissection with aneurysm, etc etc. I don't know....24 pills/day? My fingers shake and my left hand has its own tremor.

I derailed again. Got off subject and now I can not recall what my next thought was going to be about. I know that I had a thought at the back of my head, sitting there ready for me. I think that the problem is that I can not even skim the surface of the area, whereas before, things were different. Before, I could 'hold' a key word like 'box' and keep another word like 'car' in my memory. Now, I am constantly asking my caregivers about my own words, my own conversations. "What did I just say?" "What were we talking about?" Everyone does this sometimes, right? What if you were walking down a hallway and you forgot where you were going? Does that ever happen to you? What if your day was constantly filled with forgetfulness? Like the nutty professor? Forget who you are calling as the phone rings; forget why you are walking down this hallway; forget where you are going. Constantly. Your caregivers can steal food, toilet paper, paper towels, whole new containers of beef or chicken. Now a pair of my jeans is missing. There is always Something Missing in this house. Do not put anything down, because there is a thief amongst us. Keep your purse locked in your car. In some lives, people have to live this way.

If these people can do this to me because I'm an invalid today and just finished throwing up, how much more can they do to an Elderly person in a nursing home? Stealing, hitting, neglecting, starving, leaving in briefs with stool for hour upon hour...I hate it. The souls of these Elderly, these people who are precious as a child. Their souls cry out to me. They are right down the street and a few turns away. It is like a haunted house, constantly nagging at me. Hence my passion for stopping Elder Abuse. Do you realize that if you are lucky, you will become very old and very hard to take care of? Who is going to take care of you? If you have the means, I have seen (but I'm not telling you what to do) that long-term care insurance is a necessary part of every financial portfolio. We have to plan to deteriorate, plan to die. Decide who we want to be with, and what is important to us. Life. Human life.

So I go back and know and live through what I went through as I went through it. Because, as a patient, I went through years of animosity with the insurance companies, and with the medical profession. I'm not the only one. Doctors decide to retire early from practicing medicine, especially the elder doctors. They have seen the 'old' days and can compare them to now. It's just not like 'the old days' now, where physicians gain job satisfaction because of grateful patients. Doctors used to play golf, no? Does your doctor play golf twice a week? Or is he/she tied to a desk with 197 emails and 12 piles of papers on the desk? Don't you think it would be better if the doctors were happy to be doctors? That you could talk to them, and they will believe you. That they will try to find out what is wrong with you. And if he/she doesn't know your problem, your diagnosis, can he/she ask for help? No doctor knows everything, but there are plenty of doctors that know a little bit about everything. Up to a point. Then a doctor will eventually consider her/himself uneducated in the specialty that you might need to be evaluated by. It feels like I had to exhaust myself by planning to exhaust the resources and capabilities of one physician. Don't know what is wrong? Send me to the right Specialty, if needed. A cardiologist, or a neurologist, or an oncologist.

The way things are now. So different, so much less satisfying to physicians who are in it for the life. The art and the science of medicine. The joy of taking someone in ear pain, and later, her relief as the cochroach was out of her right ear. What if I did the wrong thing and not only was the Emergency Room patient pregnant, but... but what if it was a pregnant bug in her ear? If I broke the bug as I was pulling it out, I did not want to unload a bag of cochroach newborns into her ear canal. The ear canal is close to the brain, and common sense tells me that it would be a yucky thing to let that happen.

So I devised a plan. First, we filled her ear canal with oil. This is both to suffocate the bug, scare it into backing out the ear canal, and to keep the bug intact. Without breaking it. Oil in. Fail. Bug only wiggles more. So I take a pair of tweezer-like forceps and hold my breath. I've never even heard of this happening to someone, but here I was with the pregnant patient, the bug, and the oil. I did not think it would be a good idea to keep this game of cat and mouse for much time. So, ever so gently and precisely, I was able to hold my breath while pulling out a wiggling bug with long legs. To me, the legs seemed bony and helpless. And did I forget to say that it was a very h u m on g o u s l y gross task for me. But I am a professional. I will not let you see my face change, and my lips will not twitch because I know that God is with me. He guides me and leads me, even to the point of leading my surgical hands to grab the bug in just the right position. You might have been fine with it, but boy did I hate and love my job at that moment in time.

When I thought my care was bad, I believed in myself. I was too young to die. I have a little daughter smoochy woochy. I hated the idea that I would die on one of my hositalizations. I fought for myself by speaking up and by continuing the search for my Path to recovery. There is nothing like a true diagnosis, a true therapy, a true 'fix' or cure. On the other hand, it is not outlandish to consider that some doctors may spend more time on the computer or filling out paperwork, than they did with the patient. Is the tail wagging the dog? Hello America and beyond. You only have once to die. Why not Personal custom requirements by even one patient may disrupt the management and stability of the entire office. So much patient entitlement when

Yesterday, I saw two doctors that have known me since the car accident. I incidentally passed the Dr. Frankensteen. Dr. Frankensteen brought up so much astonishment in me at first, that I was simply whole-bound stunned. Jaw drop to the ground. No, keep a straight face while the acid in my stomach turned. He was close enough to touch me, or I could have...reached out to touch him. He walked until he was out of sight and then my atonishment turned to rage. This was the man who seemingly gave up one me and he actually wanted me to be discharged from the hospital inpatient status and then be admitted to a nursing home. A psychiatrist is a good person to talk to about these things. A good psychiatrist, I believe, helps one solve ones problems. I'm lucky I have more than a good psychiatrist. God blessed me with him.

I'm too tired. This is taking too long. I'm going to make a phone call and then go to sleep. I need a three hour nap.

2009-05-11T08:27:00.000-07:00

I sign in today in grateful thanks to God that my PICC line is still out. A neighborhood prayer group apparently started praying for me some time ago. Now I of course have the compulsion to show them God's Ways, so that they can see that it is true. Before, I was sick. Now I am well. Not well enough to do certain things, but at this point, it does not matter. All that matters is your family and your beloved generations of Elderly who have toiled to make me what I am.

Maybe I did not like things growing up, but I feel like the great lion who just got the little splinter out of hiim. I can not remember any of the entries I have made before now, and I never go back and read them again. I have no idea what I have said before today, and my mind processes this information differently than it used to. Before the car accident.

The phone rings. I have a shoe emergency that truly is a real catastrophe. Poor lady can not walk after her surgery, and her favorite and only slippers are at a house nearby. Lulu is bringing me a donut for breakfast so we can meet Dr. Dashing for book editing today. I have to take my pills. No, I have to wait until I eat before I take the pills. So now, I call the neighbor and friend, pick up shoes, take them to lady, jet down to book editing, squeeze lunch in there, then head back home to help the guinea pig with her homework. Term of endearment; inside joke.

I feel like throwing up. When I sit, my blood leaves my head. I can feel it draining down my face, as if it were a warm bottle of wine dripping downwards. If I just lay down flat, everything is fine. It's just that little balance thing, when I get up. Balance. Think of what you life would be like without it. I stand up and automatically bend down at the hips a bit. Like the little old men and little old women. I just do it to get blood to my head. If I stand up, I am like a wine cork that has no wine touching this cork, because all y blood goes down to my legs. If I walk around in this bent-over shape, some blood goes to my head. If I stand up, I may faint because of the 'dry cork' phenomenon. It is as iif my venous alpha one receptors cannot work. My veins all pop out and there is no natural 'squeeze' that is supposed to occur, so that blood will still go to my head. I wear the same stockings as paraplegics. they are so tight that we struggle to put them on. But once on, they squeeze the blood up my legs. This way, the blood is redistributed upward. Toward my abdomen and ultimately, my brain. It must be my midbrain, the pons. All it takes is one capillary, with a line of red blood cells carrying both oxygen and hemoglobin. One capillary is all I need. Without it, I am on my back.

I wake up and it is my best time. I could blow-dry my daughter's hair and go iin the car to take her to school. I sat in the disabled parking spot and met Glow. She just glows. I am going to go to their prayer meeting this Friday, after school pick-up. Now, I take my medicines without throwing up. Goodbye for now. God is good. All that I'll ever be, I offer now to Thee.

Sunday April 25, 2009

2009-04-26T12:55:00.000-07:00

Our book is almost done, letters of attestation pending. I did it. It feels like I climbed a large mountain and I'm standing at the top, all bent over and breathless, hands on my knees. Tachypneic (short of breath), breathless, and scared about how long I should be up here, and when I should start going back down to the lower resting area down below. But no. I have to stay here, because I made it this far. I have to revel in the taste of bodily success, take that pushy mind that I can now lay to rest. Sit and bask in the newness of my condition, using great caution at every turn in the road ahead.

My PICC line has been out for about 10 days, and I have been off the continuous infusion of sugar and salt water for about 40 days, I think. I'm too tired to write it down to maintain track of the days. All I know is that it is another day that the Lord has made, and I will be glad and rejoice in it.

I tried on clothes for traveling to Phoenix, AZ. I hope to meet with my cousin's family, attend parts of an anesthesiology pain medicine meeting, where my husband will be finishing his last stent as President of a national organization. I will see some people that I have not seen in years, and I will see people who I have seen before at these meetings. It will be a reunion of sorts, and I will revel in whatever I can do. I can sit for the car drive, but my neurogenic bladder has an 'all' or 'nothing' phenomenon, and I don't want to be caught losing it 'all'. So I will do what hundreds and thousands of 80 year olds do, and I will wear briefs in the car. Embarrassingly, I have had urine drip from my bladder while in an elevator, while in a plane, and in the car. Full bladder loss of control. Egads.

That is the thought for the day. I'm happy to be lying in bed making sure I do not get too tired. Yesterday, I slept through most of the day, because I had a migraine headache and my head felt like it was size of a huge balloon. Off to nap, I just have no more energy for today.

About 6 days off PICC

2009-04-16T21:33:00.001-07:00

It is like being human again, not having to confront dead batteries that stop the CADD pump from pouring sugar water into my heart area. Make sure the refrigerator is stocked with supplies. Blood clot? Activase to fix. Catheter pulled out accidentally. Catheter stuck on a chair, pulling me back like the boing of backfire. Stand up and find my bag and my tubing. Not there? Check the other side....but I turn around now, and there is n o b a g . It is only an empty spot behind me know, and I inwardly smile at being able to live without being tied to an iv.

I see struggles, strangulations, gossip, and ill-feelings that were directed toward me, and there are a handful of people who would probably like to have heard that I died from the car accident years ago. Seriously. I can not help what I think about, but I can write down my thoughts.

I used to think I had a dark cloud above me, like adversity and immoral activities followed me wherever I went. As if I was constantly being tested, constantly failing, and constantly asking for forgiveness. But now I know that God is using me to give hope to others. People with arthritis, with hypertension, cholesterol or a cancer such as breast or prostate. Girls that get pregnant and decide not to abort the baby. Adoption and love for little children who can be a blessing from God.

First I was left to be Mother to my siblings. While still in my early teens, I made 35 sandwiches a weekend so that everyone would have a lunch sandwich ready to eat when it thawed out at school. When I was 16, stupidly I ran away virtually every weekend. Got married at 18, had a baby by 19, and tried to be pre-med in college. Tried to cry through my tears, tired so that I would go to the library to study and instead, I slept there. Had a miscarriage wherein I lost a lot of blood and my ex-husband had disavowed to care for or support the baby, anyway. Divorced in medical school, devastated and lost after being abandoned in medical school, assaulted by a patient in Internship, and just did the best that I could. Good thing that my Dad taught me how to see the roses. And many thanks to the people who helped me along the way. You know who you are.

Very very much fatigue over the last few days. Did I do too much? Did I do too little? God is in charge of my life and with the Holy Spirit as my guide, I have recovered from a cluster of rare syndromes such that I am no longer bed bound and on an iv 24/7. We do orthostatics now, to tabulate the autonomic nervous system and whether there has been any neuroplasticity. I still feel extreme thirst and dry mouth, and am deciding on balancing efforts for one good: to figure out my fluid retention/production balance is daily. I think that is all this boils down to. Keep drinking X amount of fluid; urinate XXX amount of urine, and I'm up all night drinking the rest of the water. Now is time to sleep. May God bless you and lead you to do something with us. Tomorrow, I will tell you more. Goodnight.

Gotta sleep. Praise to the Lord, the Almighty, the King of Creation.

April 6, 2009 Day Off the PICC Line

2009-04-10T18:53:00.000-07:00

Monday, April 6, 2009

Today is the happiest day in my life, after my child births and wedding day. My left peripherally-inserted central catheter (PICC) line was pulled out by two nurses less than an hour ago. I am in the biggest shock of my life.

I can move my left arm and there is no pinching on my skin, no puckering of the Tagaderm, and a simple gauze dressing over a hole in my arm. I can sit up without pulling a pump and iv tubing from behind me.....I can put on a shirt without figuring out which way the iv bag and tubing are pointing. I can move to the right and to the left and not worry about whether or not my iv line is going to get stuck on the doorknob and make me fall flat on my face.

I can move! I am free! All the work, the upkeep, and the panic levels are now decreased significantly. I can live a normal life without an iv, even though I still suffer from orthostatic hypotension and the dysautonomia. And a list of other complaints that are now in the back of my mind. I can move...and I don't have to worry about PICC line infections, accidental PICC line removal, and....I can move.

My biceps and my calves feel like sponges, so my heart must need some conditioning. I have to figure out the things that are going to hurt me, the close calls to stay away from, and how to plug through life in a wholly new manner. I tell myself to forget about all of that for now, and revel in being free! Moving my arms up and down without feeling a twang of iv pulling my arm back. Everyone says I am a medical miracle. I am humbled and grateful, especially for all your prayers. If it had not been for all the prayers that were said on my behalf, I am certain that I would not have been touched by the feathery touch of a healing angel.

I want to plant new plants, but I get short of breath from performing even the smallest tasks. I break out into sweats that are independent of my estrogen/progesterone levels, and I keep drinking mineral water. The iv, the bag of D5NS, the CADD pump, the batteries, and keeping one cold bag out for thawing before it enters my heart area directly. All of these are no more. I am so blessed by God to receive this miracle at this time. Perhaps God is leaving me with unfinished work, for giving my Testimony, and for blessing the name of Jesus. God Bless You while I sleep. I am sure that when I wake up, I will not remember that I am in a hospital bed. It will take a couple minutes of realization, then my place of residence and my absent PICC line will suddenly strike the memories in my brain. I will be in a confused daze of realizations, and I give God all the glory.

Day #17 off iv Infusion

2009-04-02T22:01:00.000-07:00

I think my dysautonomia is 'coming out' as each day passes. It has resurfaced. When I stand up, my heart rate goes to 100 beats per minute, and I feel chest palpitations, light-headedness, and fatigue. This is perhaps the most fatigue that I have felt in years. Just t-i-r-e-d...and sleepy, and a little voice speaks inside my head. "You're getting sick again", or "You have to sit down". I do not believe that there are voices coming out of my teeth, nor am I having visions or hallucinations.

I have to listen to my body, otherwise it will become weak and frail. Having been bed-ridden for ?3 years, my body will bring me down to the ground one way or another. So far, no fainting for me. Although I've been close and seen the world spin around me. If I just squat (reminds me of 'blue baby syndrome' or Tetrology of Fallot), increased cerebral perfusion is 'felt' by me.

What does it feel like to be on the verge of passing out with changes in my body's position? Like I'd better know what is going on with my body, and that it gives me pre-warnings, warnings, and then warnings that I listen to. "Sit down" I say to myself. Buying planting flowers from my favorite nursery has given me incentive to garden again.

Alas, my brain is ahead of my body and my body is severely limited. I am constantly "on guard" for a feeling of blood draining out of my face. People say my face is the door to my body. As my eyes get black underneath, invariably I am so, so, so tired and apparently my face looks pale, with blackness under my eyes and a desperate need to sit down or lay down now. Before I find myself with scintillating scotomata as I pick my head up off the floor. We do not like this feeling, and we do our best to avoid it entirely.

It is kind of eerie that if I feel fine, my face turns pink. It's just like being see-through or having a constant thermometer on my forehead. You know how I feel by the pallor of my face.

Since I take a nap every day, and have done so my doctors started asking me questions today. Some of my doctors think it is a good idea to perhaps 'wake me up' with a pill in the afternoon. Cardiac side effects are similar to drinking too much caffeine, and it really bothers me to go on another pill. What should I do? The proper thing to do is to listen to my cardiologist, since he has been a literal life-saver for me. I'll see him in a handful of days. I am hoping that he will decide that my PICC line can come out. I have to wait until Monday, so that my cardiologist's opinion will determine my outcome. He knows that I am a fighter, so perhaps God will bestow another blessing and allow my condition to accelerate its repair.

My son is more like my son now, when it seems ironic to all of a sudden miss being with him. I look at his sister every day, and I remember being so broke in medical school that I drove an ice cream truck, and I cleaned toilets for a law office. We have been through our own special struggles and our own unique pains, and I am grateful that he has a good, good heart.

Go out and dance, if you can. Travel. Run with the smell of the morning's fresh dew on the grass. If you are healthy, use your body. Think of me and how I can not stay out of bed for one whole regular day of my life. My energy is sapped, and now I will sleep what seems to be an unending void of sleeplessness.

I thank the Lord for all His goodness. If this is the best physical condition I can attain, then I will be happy for small trips, for remembering my music of the 70's, and I will even get my beauty rest daily. I can live like this, if this is the 'best' that the doctors can do. I am so grateful to be alive, to have lived on the pump and iv catheter for years. And, hopefully, to get this PICC line taken out of my arm and my chest. First thing I'm going to do? Jump in our pool, and start using the lap lane we created for the pool.

BTW, my sun poisoning condition is much better. My lips and surrounding skin folds are no longer turning tingly and red, peeling after two days. My lips feel like normal, except when I get thirsty and my mouth is dry. Glory to God in the highest, who has bestowed a medical miracle upon me, and who has allowed my children to get to know me.

I wish you all of God's speed in turning to Him for a relationship of love and acceptance. Do I care what any of you think about how my writing is? I am too old for that, and too wise besides. My role is to have fun telling you about our daily lives here, so you can appreciate your ability to drive, to take the bus, or to go for a walk. Of course I miss walks in the mountains, silly. Anybody would. But I take that energy, close my eyes, and play it safe. I would not want to be guilty of sitting in the garage with mound after mounds of popcorn on my shirt. I need to give people help, and if I am boxed in a corner, I will strive for one thing: survival.

Highest Personal Regards,

Margaret A. Ferrante, M.D.

Board Certified Anesthesiology

Board Certified, Subspecialty Critical Care

Board Certified, Forensic Medicine

Day #15 off iv Infusion

2009-03-31T21:06:00.000-07:00

Definitely feel more light-headed today. More of a sense of being on the cusp of hitting the 'wall' that throws me with my head to the floor. This is when I need blood in my head, and when I can feel that there is not enough blood flow to keep me standing up.

Yesterday, I saw my former and current mentor, Dr. Rashad. As we ate tacos and burritos, we all laughed at who could eat the spiciest and hottest peppers. I remember back during Anesthesiology Residency, when Dr. Rashad would look for the hottest peppers to eat. I was amazed, encouraged, and enlightened to see him. God has truly blessed my soul by allowing this doctor into my life at this time. He was such a big help to me in residency. He believed in me, and in my intellectual capabilities. He was nice to me, relieving my OR case so I could do my preops for the next day. Like my father, he taught me to give. I am so glad to be a part of his life, and also to be a part of his girlfriend's life.

Today is Tuesday. Finally got a pair of broken glasses fixed, and saw my PCP. Take a little blood here, give a little shot there. I stumble out in exhaustion, walking slowly upstairs to my bed. Each step accentuates the quadraceps muscles, and I lift heavy leg after heavy leg up the stairs.

I can go to sleep now. My prayers of thanksgiving have reached the Lord's ears, and God already has my whole day planned out. Nothing will happen today, that will be a surprise to God. I accept His world that is now adapted for me. IV bag or not, hum, drum, drip, drop.

There is nothing to listen to, because there is no CADD pump connected to me. I am still in shock when someone sees me and notices that I am not connected to an iv bag! I am still in shock when I can stand up from a chair, reach back, and NOT have to pull out the bag, the iv tubing, and the CADD pump out to make sure it does not BANG! onto the floor.

No more pump. No more iv tubing. The PICC line is in my left arm, and the tip lies in my right superior vena cava. When they pull it out, there are bound to be some thrombi (clots). If a big one floated up to my heart, it would then leave the pulmonary arteries and travel to the capillary: alveoli exchange of the lung. There must be some chance that a clot could then get stuck in my lungs, collapsing the distal lung ahead of the clot. But no, God did not put me through all of this to have a simple ICU complication end my life. Somehow, I think that God will let me die peacefully.

Day # 13 Off iv Infusion

2009-03-29T14:19:00.000-07:00

Yesterday, Saturday, flew by and all I remember is that my right shoulder was in so much pain that I felt like crying, throwing up, and fainting, all at the same time. My Caregiver made certain that I got all my medications, all my meals, and that I actually had a spa of a feeling, which is a simple bath.

Once a person is disabled and requires assistance with the Activities of Daily Living such as assistance getting into a car (transfer assistance), the whole household will permanently change. One step at the front door is converted to a ramp; this is repeated at the back door, too. Handle bars at every step in the house, sharp corners all rounded. We can talk about that later.

Today is Sunday. I woke up at 11:00 am, feeling wave upon wave of ... grogginess...upon me. Perhaps I was just too tired. Perhaps all the prayers put me into a coma of sorts. The kind of coma that God causes, as He created Eve from Adam's rib. I felt as if I was receiving anesthesia gases, and each time I awoke during the day, different kinds of consciousnesses were upon me such that I felt that I was waking up by accident, or only for a fleeting moment. But no, this calm, warm, toasty bed and the sheets and lavendar-scented room. They beckoned me back to sleep in less than one inhalation/exhalation cycle.

8:36 pm and I feel that I can sleep another 12 hours. Praise God for chemists and pharmaceutical advancements that are there to alleviate the sufferings and the pains that the human body may undergo. Traditional medical pain pills have been a key trigger that have helped my shoulder pain. As is commonly done, I would take my pain pills first and then better tolerate my physical therapy.

When I suffer, I think of all the suffering that God allowed His child, His Son, to undergo. I do not understand why there always had to be an option of suffering. I used to spend nights wondering how God could contain Himself, knowing at all times every rape, every murder, every battering, every suffering of a child's empty stomach. I'm so glad that God is God, and that I'm not God. Or you :), for that matter. Why did the Old Testament God require slayings of animals as blood offerings to Him? Is someone really allowed to suffer for someone else? If that is so, I dedicate my sufferings to Christ's sufferings. One would think that God would be surprised, that I would want to do this. Much as we were first surprised to know that God allowed Christ to suffer for us. Why should you or I dedicate sufferings to God, or to Christ, or to our Mother Mary, for that matter? It seems magical, but apparently God allows sufferings to be dedicated.

Today, I felt dysautonomia taking me over. I just walked bent forward, to keep my head lower to the ground. More blood to the brain. Then I won't faint, or have syncope. I felt so weak that I had to sleep. Fatigue, severe fatigue as if my body was too heavy to move. I slept through my medication regimen, my meals, and my senses.

I can not type any more. Yes, even the extensors on my fingers and forearm are sore, and I could use an ice pack on my shoulder. Off to pray for my children.

My father prayed for us, his children. Each of us could have ended up with a bullet in our heads, just like my best friend. I believe that God holds in great regard, the relationship between a mother and a daughter. I am so happy to have spent such a day today, with my son in good regards, my daughter in my presence, and my husband close at bay. Peaceful, calm, relaxing and natural.

Goodnight and May God Bless and Keep You at His side.

DAY #11 with no gtt

2009-03-27T23:22:00.000-07:00

Busy with doctor visits, telling friends and neighbors, pastors and the public has been draining this week. Fortunately, my .. I like to call him my neuropsychiatrist because he help me with my head so much, Dr. Dashing. Busy drinking water and juice and water and water, to simulate being on the iv.

Realizing more and more each day, how I am still in shock about my miraculous recovery. People tell me I have an aura and I feel as if the Glory of God is radiating from inside my heart to the periphery around my body. Each day, God shows Himself in our lives. "Coincidence" occasions line up daily, as if God has taken a huge turn and my relationship with Him is irreversible and gaining strength.

A couple days ago, we had an incident wherein Mother called in right when my child was screaming in pain. Here I'm trying to reassure the screaming child, Mother is screaming on speaker-phone so that the granddaughter overhears Grandma yelling at us. My Personal Assistant(a) and I are laughing so hard as we watch the glow on our child's face. She is glowing because she hears Grandma screaming to me and the Assistant, with great passion for the child and great impatience with us. She sees that Grandma is 'on her side' and a sparkle comes to her eyes. A sparkle of a firework sinks in: someone cares about me so much that she will yell and fight for the child How wonderful it makes my child feel, and how much of a boost of ego she will have just knowing that someone cared enough to advocate for a helpless child.

I have redefined what it is to have a traumatic brain injury (TBI), because I know the neuroanatomy and the neurophysiology of TBI. Because previously, my brain was so high-functioning, now I know how to describe how 'differently' if thinks now. After the accident. After learning how to start talking about a subject, 'derail' for a moment, and then getting back on track. I feel as if I do this much more often than usual. Perhaps the better I get, the more sensory input my body feels.

I am still in shock. I'm still on 23 or so medicines/day, remain orthostatic and lightheaded when I stand up. My PICC line is still in, but is getting itchy at the insertion site to the skin surface.

Off to try to sleep. Soilent Green. Alternative School, running away from home. I feel as if I just woke up from a coma, and am realizing who I am. Perhaps this happens to everyone who has undergone a head injury. My worst day was when I was sitting around a table of brain-injured people at a group meeting, and I was sitting in one of the chairs around the table. I was one of them. I'm supposed to be the one standing up, teaching this class. Sadder still, I actually learned some guidelines that have helped in practical life. I could not believe that I was now one of them and the enormity of it all was not fair. Someone should have provided counsel to me beforehand, explaining to me what the group meeting was about and how I would feel.

PTSD? Yes. Overwhelmed, in disbelief, and shaking my head side to side in disbelief. I knew that I was really, really, smart, especially after completing my USC, Stanford, and University of Pennsylvania stints in time. It was the most sorry that I have ever felt for myself, this realization and epiphany that I was now status post brain injury. Good thing I started out really, really smart. I believe the neuroplasticity of the brain will recement a new line of communication, neuron by neuron.

God is so good. Last night, we asked a store to remain opened for us a little after closing, and the man awaited our arrival. In short, he grew up in a family of Pastors, and this store owner grabbed my hand over the counter, and started praying and crying at the same time. Praise to the Lord, as God was able to send out the message that I am a miracle. I fall to the floor in great thanks and humbleness as to why God chose this Path for my life. It is as He chooses this Path, the most blessed adventure in retrospect. My Path is still being formed, as is yours. I just started with a statue of the crucification of Jesus in second grade, dedicated my life to God, had my father praying over his children daily, and lastly, I give my sufferings to God, as a token for the pain that Our Saviour underwent for me and for you. It is truly an awesome thing.

Off to sleep. Have to check the medical stability of a relative, speak to another person's doctor, and get a feel for whether or not this relative will die soon, or not. My Blessed Aunt, whom I used to wish was my mother.

Highest Personal Regards.

Day #6 Off a Continuous Infusion

2009-03-22T20:43:00.000-07:00

We went to church today, several days after our pastor at First Baptist had interviewed me regarding my overwhelming recovery. After listening to a string of regularly-scheduled items such as daycare, a book written by a survivor, and other odds and ends, the human being in me was miffed. Miffed because I had been selected to be one of God's miracles and a great balloon of Praise, Glory, and Witnessing was subdued and internalized in my soul. I wanted to sing God's praises and tell my story to the church, because I was overflowing with the magnitude of God's grace.

I was wearing a poncho with tassles, and I asked the Pastor to pretend that he was my iv and iv bag/pump. Quickly, I ran carefully up and down the aisles. I praised God as I had my freedom from the iv now! Freedom! I can run to the left! I can run to the right! I can suddenly stop! I can turn around and go in another direction any time I want, and I don't have to keep track of my direction, my iv tubing, or my iv bag. No more batteries that run out and stop my iv pump. No more bags of iv fluid to keep blood going to my brain. Thanks to God, and thanks to Dr. Verapamil, my neurologist of my cardiologist's selection. For about 2 weeks, I feel much better!

I use my cane so as to prevent falling or imbalance. When I stand up to move to another seat, I subconsciously feel for my iv bag and tubing, since I am in the habit of treating these things as if my life depended on it. My hand goes backwards behind me to feel for the tubing, and I remind myself that God has bestowed a miracle upon me.

How does it feel to be a miracle? It feels the same as having faith and confidence in God, as if He is in control of my life. He knew this would happen. He knew it long ago, and He saved it up for a surprise for me. And to be a Testimony and a Witness to God's promises. Having been 'raised' Catholic and then 'reborn under baptism', I always had faith in God. He has worked some incredible stories, wonderful additions, and inspires hope. Now, I could serve as a testimony, and I feel like I am now 'a grown up Christian' as I lean on God from day to day.

Lunch with mother turned into a fantastic lunch with my caregiver, and with Renee's other daughter, Rita. We ate golden rice and peas with dill, as well as turkey patties. To the right was the Griffith Park Observatory, and to my left was downtown Los Angeles. Views out of every room, memories of past times, and sorjourn love. Broken, fractured arm and boy. Do you ever find out who your friends really are.

Message for today? Bring God into your life every day. Thank Him for all you do have in the shelter of your home with a wireless server , especially if you can. Live each and every day for His Will, not yours. Expect changes to happen, because He knows what you need since the day you were born. Life is what happens while you are seeking to plan your life.

Ask for Open Doors to open at the right time, and for Doors that are supposed to be Closed by God, to be closed at the right time. Thank you for blessing us as we Praise Your Name and your righteousness, even if (and especially with) the sky is falling down upon us. You still hold us in Your hands. Thanks be to God.

Day #5 Off a Continuous Infusion

2009-03-21T22:07:00.000-07:00

This morning started with a jolt. I was under a 10:00 a.m. deadline to have my child and her sweet sleepover friend ready to leave the house then. What did I do first? Got these little critters up and awake by promising they would be served fresh Mickey Mouse pancakes hot off the griddle. Placing blueberries in the batter, my daughter looked at me with a face that said, "Yuck."

No sooner did they leave, when the dog escaped from the front yard and started following a horse trail. Innocently, my caregiver and I started walking along to get her. She thought we were in a fun game of 'chase' the dog. No, we just wanted to leash her up and take her home. We were bitterly awakened when the trail led us past several dogs that looked cuddly and innocent. Oh no. When they started barking, huge teeth glared at us as if the dogs had not eaten in a week. We got out of there as fast as we could, but I can only go so fast. Thanks to God, we made it home in one piece and by then, I was so exhausted and thirsty that I thought of drinking an ice cold beer. My heart was beating so fast that I could feel it in my chest.

Later, my right shoulder received excellent stretching, and my soul received much cheerleading as my caregiver Patsy patiently went through my physical therapy routine. Despite the pain mediation I swallowed an hour before stretching the shoulder, I was in great pain as we tried to get my arm to lay flat on the bed. For half and hour, we pulled and stretched until I just couldn't take the pain any more. For those of you that know me well, you know it must have been excrutiating pain that I endured. Otherwise I would not complain. I mean: it really hurt.

But pain is gain, no? Yes, especially in this postoperative situation that requires pain to gain range of motion to the shoulder. My physical therapist was so encouraging and serious about my completing the therapy, to loosen the back quadrant of the shoulder capsule. Without fixing this problem, it is possible that I would never be able to do the crawl stroke again, avid swimmer that I have always been.

I didn't go through this risky shoulder to have an incomplete healing. I have, and I will continue to seek the help of my physical therapist(PT). I thought I could do a lot of this therapy on my own, but I was naive. The therapist has to try to get me out of this situation that I got myself into. Of course, I went to PT much later than I should have, considering the surgery was on January 7 and now it is nearing the end of March. But these things happen, so we pick ourselves up and dust ourselves off, jumping into PT late. I am so thankful for the therapist's patience with me. The worst thing I remember, the thing that threw me down to my knees to ask for God's mercy, was: the pain.

I took my nighttime pills and sat to make a journal entry. To the right, our daughter snores in her little mixed up head full of grown-up problems, like, "When am I going to die?" Downstairs, my husband watches the History Channel and I am happy to make a journal entry before I pass out from fatigue. 5 more pills to swallow, so off I go to complete this task. Goodnight.

A special note to Dr. Shadrad, who sent me a couple emails that I can not open. If I try to open my mailbox, the next thing I am told is that I can no read any of my emails. Perhaps I could trash alot of old email, but I can't even get into the mailbox to remove old emails. Geesh. A day wihout email, another day, and yet more...I will figure it out and solve it.

Day #5 off the iv infusion? I'm orthostatic upon standing, to a heart rate that exceeded 90 bpm. Too fast. I need to drink more water, and I plan on going to church to give thanks to God. I am realizing that i must be fully retrained to live in this body without banging it up (bruise checks).

So tonite I am thankful for my husband, and I do need my own recipe for life. Here's to a day of rest. A day of rest and not overdoing things. I'm going to have to learn from each day. Oh. And I must have been tired and/or had too much activity for the day...I will take it easier tomorrow and God will direct m to the right Path in my life. For now, I need more sleep.

Day #4 Off a Continuous Infusion

2009-03-20T19:05:00.000-07:00

Well, I thought that today would be an interesting day. I asked the Lord to give me a day that would be like the days that I have left to live before me. So, these are the things I learned today:

1. I sought physical therapy for my shoulder, now week 15 out of rotator cuff arthroscopy (threw that football with my Dad perhaps a wee bit too much, growing up). My shoulder is not completely 'Frozen', but I am behind in the process of recuperation to gain full function of my shoulder, with time. And pain. I was stretched and pulled and tried pulling a pulley while bearing the utmost amount of pain that I possibly could. Never in my life have I 'walked in' to a rehabilitation program and a postoperative recovery as bitter as this one has been. But I knew what I was getting into.

2. I need to exercise my shoulder every day, purposefully pulling my shoulder adhesions apart from the shoulder capsule. I get to decide when my exercises will be done, so that I can prepare myself for self-torture. I went through this surgery so that my arm would be better, not worse. One day, my favorite dream is to jump in the swimming pool. No iv, no battery, no pump.

3. It is imperative that I constantly drink water, as I wake up completely parched in the morning. Perhaps I have to keep drinking water all day long, as if my continuous infusion by iv was still 'going'.

4. I'll probably have to take a nap for the rest of my life, because in the afternoon, I hit a 'wall' and I have to go down for the count. I need to wake up on my own time, and not be interrupted. If someone or something wakes me up, I am groggy and listless for the rest of the day.

5. I can not do more than my body tells me to do.

6. Most of all, I give thanks to God for this miracle he has given me. I do not have to turn around every time I move and carry a ball and chain (i.e., my iv bag and my iv tubing). God will use this miracle for His glory, and as a witness to His power in my life. You, too can have God's power in your life.

Gotta go. Going downstairs to my husband so I can appear to be just like any other wife...mobile, thinking, and happy to see him. Except that now, everything is different. I can walk.

I am Off the IV Bag, Day #3

2009-03-19T21:41:00.000-07:00

This morning, I forced myself to get out of bed and make French Toast for breakfast. I took the magical Rx that my neurologist put me on since my last hospitalization, the Rx that I believe now courses through my bloodstream and supplies ample blood to my brain. This cerebral blood flow is what I have been missing. It is improved so that clinically, I still have no symptoms of nausea or vomiting, and no need to take ondansetron, the iv antiemetic that used to keep my head and my intestines from wretching.

On my first shift of caregivers, Annie May was my caregiver today, and made my day splendid. She picked out pink clothes for me to wear (oops, that was yesterday). Correction. I stayed in my blue and white striped pajamas today, because I was weary. Too weary to make it in for a doctor appointment with Dr. Amor, whom my caregivers and I adore. Now I remember that I called to tell the office I was too tired to come in for a morning appointment, and Miss Sherylm me promise to call her later in the day, to ensure I was not feeling worse. What did I do? I slept.

I slept like I was sedated and in a coma, with nothingness surrounding my very being. As if a zombie, I puttered around my room and tried to make a dent in my pile of mail that was slowly mounting. When I woke up to our daughter's voice, I sought for love and affection from her. I am convinced that I will be able to do more and more physical things for her, and with her.

My caregiver Miss Noel, had taken charge while I was asleep. Dinner, ideas, appointments. There is plenty that we able to do together, and I will miss her until her next shift. Miss Noel has a way of laughing with me, and together we can feel our hearts being melted together once again. She is my personal assistant and we have the same character and discipline rules that can be easily enforced.

I made it downstairs for dinner, since I had been in bed, asleep and resting. Suddenly, the end of the day is over and I have to take my nighttime medications, as well as ensure that we have a Mother-daughter dinner before us. Now I must sleep. My eyelids are closing and I must sleep.

I Am Off the IV Bag, Day #2

2009-03-18T22:22:00.000-07:00

Yesterday morning, I woke up to CADD pump pumping away. As usual, pump by pump, hum drum by drip drop. Except that the fluid was dripping on my left shoulder, and it was cold and wet. I knew it was not blood, because it was not warm.

Slowly, it dawned on me that my iv was disconnected from my PICC line, and this had mistakenly occurred sometime overnight. I woke up as if I went from 0 to 100 mph. It finally hit me. I was not connected to my iv bag, and had not been receiving iv fluid for much of the night. In my groggy stupor, I tried to punch the iv back into the pump. Seconds later, my medical knowledge and training naturally intervened. I knew the iv tubing was contaminated, and that it therefore was no longer deemed a sterile line. I threw the end of the tubing into the trash can, letting the pump drip and drip, drop by drop. I fell back to sleep.

It was when I later woke up, about 30 minutes later, that I shot into high gear. My mind was both fascinated and intellectually dissecting what I should do next. All I could think of was, "This line is my life. This line has been my life, has saved my life for over two years. This is my line, the one we keep sterile, the one that has been infected ?6 or 7 times. The last one the PICC line nurse told me that I would ever be able to place in my left arm, as there was a large stricture in the vessel that required fluoroscopy to 'pop' the line into place.

Yes, the last PICC line change was too hard to place at my bedside. Since the line kept going up into my frontal veins in my head (ouchy, yucky feeling, to feel a stick inside your brain), therefore they took me down the hallway from the hospital room and downstairs by elevator, all to make it urgently to the Radiology OR Suite. Let me be perfectly clear about this. My 'sterile' field travelled with my body, and I stared at the automatic fire sprinklers and took note of mild cracks and imperfections in the ceiling as I was whisked away for a procedure I never thought I would undergo: fluoroscopic placement of a PICC line.

As I lay in bed, I reflected on my pump and iv bag situation. Of course. For right now, the iv is not connected to me, so obviously I have to increase my po (per os, or by mouth) fluid intake to make up for the loss of central fluid going through my heart catheter. My mouth was dry and gummy, and yes, I could not wait to get my hands on something to drink. I reached out and grabbed my carbonated water, balancing just enough to prevent me from falling out of bed. I already had enough issues going on, and falling out of bed was not going to be one of them. I was obsessed with my PICC line and preventing contamination. Somehow, I made it to my pharmacy cabinet and pulled out two 4 X 4 gauze dressings and a piece of paper tape. I wrapped my PICC line double lumen ends together in this sterile gauze, all with one hand. I fell back to sleep.

Just like clockwork, Angelina arrived in time to help me figure things out. We did orthostatic blood pressures (positive by systolic mmHg and by tachycardia, increased heart rate) and decided to take the day 'easy'.

But then I remembered that I was invited to a Garden Party, as it dawned on me that my quality of life could possibly be improved permanently, and this was my miracle. My lovely and protective husband let me go visit, laugh, and play table tennis with a dear old friend. It was his daughter's Birthday, St. Patrick's Day, and my No Bag day! I almost fell a couple of times, and I still used my cane for walking. Every step was extremely deliberate, as if I was walking on water. Common sense said to keep using the cane, as my imbalance could lead to a fall.

But did I ever have a fun time...a festive family time of peaceful laughter. A place where I knew that I could be myself. Me. Watching my child playing with older children, both of whom knew us throughout the years. Watching the interactions between my mother and the others around her. Bleak deference to the elderly people in the house, who deserved to be waited upon as if they would not be with us tomorrow. I shall never forget this day, for God set things in motion so that nobody could deny the coincidental happenings of my PICC line.

Recently discharged from my favorite hospital, Good Samaritan Hospital, I had been slowly going 'down' on my PICC line rate. There was a time that I was on 100 ml/hr. On arrival to the hospital, I was at 55 ml/hr. Once home, I had weaned myself to 27.8 ml/hr, a simple TKO (to keep open) minimal rate that would keep fluid going, but not clot the iv line in my chest. I had been keeping in touch with my cardiologist team daily, and they knew that I felt okay so far.

Sure, I couldn't jump in a pool, go for a 3 mile run, or ride my mountain bike from Los Feliz Boulevard at Hillhurst Street, and go for a grueling mountain bike ride. The ride included an incredibly physical effort to get to the top, which displayed the Griffith Park Observatory. I could not swim laps because the PICC line itself was still going from my left arm to my right great vessel leading into my heart.

I made up my mind to go to this party, feeling that I desperately wanted to get out of my house for a social event of past-life friends. Confirming it with my husband, off we went to the other side of town. We stopped along the way at the Glendale Galleria and, for the first time in 2 years, we took my daughter shopping for clothes.

Since I had been ill and had collected 3 years worth of clothing attire when my daughter was 2, this was a memorable event. Besides, her pants were above her ankles, as she had an unexpected growth spurt. Later, my daughter would tell her Nanny how much fun she had shopping for clothes with 'Mommy'. I had no idea that this would be an impressional 'event' for her, too. And now I didn't have to argue about what she was wearing to school (my ulterior motive), since these were Mother-Daughter articles of clothing that suited her taste, too.

This little one had been ripped away and ripped away from her mother, hospitalization after hospitalization, PICC line nurse after PICC line nurse in the Master Bedroom, changing my iv dressing once a week. "Are you going to die, Mommy?" echoed in my ears repetitively, as well as, "Am I going to see you after school?" The little one came home to an empty house for the last 25 hospitalizations in the last 3 years. I scooped her up and smushed kisses over her angelic face. "Mommy is better. Let's go shopping and then, we're going to a party!" WOW. I never said anything like that for as long as our daughter could remember.

This morning, I called my lovely mother-in-law, and my closest friends and family. I let them know I was still okay-ish but I had to take it really easy. I got short of breathe easily, and I still, even today, had to drink 4 bottles of various kinds of water.

Where will my life go now? I was up last night until 12:30 am, and had been up and down overnight for several years. Today I took a 3 hour nap, and I wake up rejuvenated. My hands lift up to the sky in gratitude to God, and I let Him lead my way.

I had another 'Awakening', like the one I got after going to Chicago. I do not know why God picked me to go through crazy times all my life while I juggled medical training that became part of my being. What does my being a medical doctor have to do with all of this? I have learned that my brain is my protection and my integrator of knowledge, based on experience with other patients, especially those at LAC-USC Medical Center. Unusual presentations, rare disorders, and keeping educated with current medical knowledge. I feel like I am still learning, still discovering, still polishing my expertise in TBI, dysautonomia, vertebral artery dissection with aneurysm, s/p diabetes insipidus, and now with a new diagnosis of Basilar-type migraine which has been my most recent savior of my life.

God is taking care of me and how did He show Himself to me, as The One who makes all things possible? Perhaps I just 'happened' to be weaning myself down on the PICC line iv rate, and my doctor agreed and was informed. Perhaps I just 'happened' to be on such a slow infusion that one could logically say, "Why don't you pull out the remaining PICC line?" The one that starts under my arm skin and ends up near my heart. The PICC line is doing virtually nothing perhaps, and is at risk of infection and death while it is in, especially if no iv fluid is going through it.

So today, I brace myself for another bout of fighting to live. The PICC line either needs to be reconnected to an iv and I need it virtually for life, and/or we can think about pulling it out.

I never thought I would see a day without being attached to my ball and chain, the iv bag and the iv tubing, respectively. But you mark my words. If I have to be the first person to practically recover from the dysautonomia, you will hear my story in time. My story is your story. The only thing that differs between you and I is that the injury and the cure may be completely unrelated. This is reasonable, since all my syndromes are rare.

But you have your diagnoses, your injuries, your illnesses, and your way of dealing with your problems, just as I do. Except perhaps this: my medical school friends and I prayed with our patients and included Christ as the Great Physician.

Is it a miracle? Can I really live off and without a PICC line? We were running out of veins, anyway, and received no 'recipe' for living longer by poking in the PICC lines in a certain order that saves the best veins for last. Out of veins? Out of life.

That is what I thought before. It is how I felt and what I saw. All the answers pointed downward, as if I was on a spiral with no place to step off of it. So, I jumped. I jumped into 'fighting' mode to fight to live. I jumped into 'trusting' mode so that my life, my plans, my inclinations, and my actions were all to glorify God.

Talking to strangers on the elevator, especially the ones in a wheelchair. I was in a wheelchair, too. Perhaps if I was lucky, I could live for a couple years on the PICC line. One hospitalization, the Holy Spirit told me to 'Sit up, Stand up, and then Walk'. Who am I to argue with God? No one. God had greater faith in me than I did in myself, and He knew that someday, I would be off of the PICC line.

He lets me know that He is in my life. It is actually quite funny, as I have found God's sense of humor. Just ask Him to show you signs, and you, too, will be given signs to encourage you in your Faith in Healing. Every day, there are medical miracles that are published. Why can't you and I be medical miracles, too, instead of accepting what the medical school books teach doctors? My body and my presentation to the doctor's office are usually unusual. A touch of my own forgetfulness, my own Altered Mental Status, and my vomiting patterns may be a harbinger of an upcoming PICC line infection, or some other new diagnosis.

Go on. Lay it on me. I submit my sufferings to Christ, as He suffered for us on the Cross. In the face of impending doom, I sing, "Holy, Holy, Holy" out of our bedroom window, and the birds, squirrels, and bunnies make their way into our front yard. The yellow and orange hummingbirds outside my window no longer fear from my presence. Perhaps they all just think that I am another animal that sings like a bird. Perhaps in perplexion, they navigate their way into my garden. God's way. God's way of giving me a gift that no one can purchase: my own forest of animals, like Snow White in a cottage with a pie in the oven. My own family for whom I have great love and mostly these days, the breatholding sound of our daughter singing acapelo to The Phantom of the Opera.

Today, I went to a doctor appointment, Costco shopping, bouquet-making, and finally, a nap of unpreturbed stillness. Some may call it a semi-coma state, as my brain is firing away while I sleep. I can feel that my brain needs this nap time to regroup, and I praise God as I mentally visualize single-file red blood cells making their route single-file, to the tiniest, insyest, binsyest capillaries that perfuse my brain. When I reach this point, I am down for the count. I praise Jesus the Physician and Healer to work in my body as I sleep, to allow neuroplasticity and rerouting of the vital signs so that I can walk like every one else: without being on a battery. If I feel like fainting, I put my back on the wall and slide down to the ground in utter limpness. After my nap, it is as if another new day has begun and I can once again rejoice in the Lord, singing, "Holy, Holy, Holy".

Enough for tonight. I should be finishing my first book, so that you can be a part of my life and so that you can learn from the scientific and the spiritual worlds. To me, that iv bag never belonged to me. I would look at it and say, "I do not accept you in my life. You will be gone from my life forever."

Now, I look forward for tomorrow and the blessings that I can be to others. Today, a little old lady was buying groceries, and the Holy Spirit whispered in my ear, "Give her twenty dollars". I immediately obeyed, as I had seen the poor woman had overstocked her shopping cart and had to send back several items, for lack of money.

Her response? She put her hand on her heart, and said, "Who would do something like this?" We pushed away our carts to the Exit while she was still at the cash register and was presumably getting back those items she really needed. I turned back 4 times to smile and warmed my heart each time. With every turn, I could assess that she was still in shock. I raised my hands to the Lord, for telling me that she needed the money. I gave her my last twenty dollar bill and I can not convey to you how fantastically happy I was that moment. It was worth everything I ever did to land myself in that store, at that time, and be a help to her.

I was reminded once again: we are here on earth for one another.

Tuesday, March 17, 2009: St. Patrick's Day, Tyler's Birthday, No IV day.

2009-03-17T22:04:00.000-07:00

I woke up this morning to the faint odor of staleness. In my half-stupor, I began feeling the sheets and pillowcases around me that were tinged with my iv fluid that was supposed to be going into my heart. On closer inspection, the iv tubing had accidentally been pulled off and 30 ml/hr was dripping all over the bed. I used to practice being blind when I was little, so that I would know how to do something in the dark.

I am drifting off to sleep as I try to stay awake long enough to make my entry. The world does not have enough places of recognizable reward. So I talk to our wonderful Lord Jesus. There were many times that I spent, giving my sufferings over to Christ.

1. God woke me up with the wetness of life, an astounding sense of humor upheld.

2.God woke me up this morning with a large sense of fateful people just spontaneously and erratically

3. God woke me up this morning with my iv disengaged from my PICC line. Praise to the Lord.

Miracles, Education and Inspiration

2009-03-16T15:03:00.000-07:00

March 16, 2009

Today, I contemplate all those who have helped me. To my beloved father who awaits me in Heaven. To my Mother Renee who has always been there for me, and who continues to give me advice. Others who have believed in me: my son, husband, and little daughter. Professionally and personally, my years at Stanford University School of Medicine were by far the best professional years of my life. Here, I loved going to work every day as an anesthesiology doctor in training (residency). I was treated as a person with a brilliant brain (albeit up for question by some), in sharp contrast to over-rigors I suffered at LAC-USC Medical Center. Here, several Attendings believed in me while my peers seemed over concerned with my life.

As I begin another route, another path to physical wholeness, I must pause and thank Dr. Nabil Rashad, Dr. Thanga, Dr. Steve Haddy, and Dr. Vladimir Zelman. You helped me take my assigned ICU cases into the ORs, making me cemented in caring for the critically ill. Thank you for all the ICU patients I had to take into the ORs...the old lady with a stroke, the young man who is now paraplegic from inflicted gunshot wounds. I had to analyze their iv lines, central lines, arterial lines, and take the patient off the ventilator. I had to squeeze the AmbuBag over and over again after trachestomy after tracheostomy after tracheostomy. Perhaps my peers were trying to make my life difficult; this I felt was true.

A single parent through medical school, internship, residency, and Critical Care Fellowship, I eagerly sponged up my guts to make it through, one day at a time. Not many people know this of me, but I left a full scholarship spot in medical school, trading it for a better chance for my son to live better. What a compliment it is, to have our children give us new perspectives in life.

My child was crying every night I was a single parent in medical school. My decision was easy. I wanted it all. A family, a profession, and success in spite of obstacles. Thank you to an elder medical student who took me by the hand, and off we drug ourselves to the Dean of the School of Medicine. She helped me acquire a letter of recommendation and official transcripts of my classes already taken. Sealed, stamped, and ready to carry. I left Oklahoma the next day.

Off from Tulsa, Oklahoma we got into my red 3-cylinder Chevy Sprint, together with a few clothes and many medical school books. I left an entire 2-bedroom apartment full of furniture and all my personal effects: antique photos, canopy bed, towels, everything. Thank you to the unforgettable Medical School wives, who helped box up my apartment up and put things in storage. Thank you to the best buddy truck driver who not only picked up my boxes, but also brought them to me in California. And sent me my first dozen roses, for my graduation from USC Medical School. I had always joked that I received more roses from my patients, than from men. As a single parent, I was too busy putting whatever leftover energy of the day that I had, back into my child. Sure, I failed at many things. Sure, I made mistakes that I am sorry for. And sure, I learned a lot. And helped the sick. I saw the door to Heaven, so this confirms that my past life must be okay with God, that He forgives me for my sins of comission or omission, such that I will be ready to go to Him when my Time is again at hand.

Thank you to the nurse midwife that talked me into going into Anesthesiology. God was watching out for me when I was accepted to the only programs I selected: USC Anesthesiology Residency, a transfer to Stanford University School of Medicine for completion of Anesthesiology first, and then acceptance into their prestigious position as one of the Critical Care Fellows. Had I known that Stanford Anesthesiology and Critical Care would be, in reflection, the best professional years of my life, one would think that I would have enjoyed it more, taken more chances, accepted more dances.

But I remembered that my father used to always tell me, "I just LOVE going to work every day! I can't believe that I actually get paid to do what I enjoy! I can't wait to get to work every morning!" Stanford Anesthesiology program, thank you for teaching me innumerable lessons. Believe me, I loved going to work every day, and the Hospital and its ICU were my home shelter of love and acceptance. I was so well trained that any Attending Physician had to go through me or another Critical Care Fellow to admit a patient to the ICU, and my Attending Anesthesiologists would always back me up, even if that really mad Attending decided to raise the bar a little harder and go tell my Attending his/her problem with me. Thank you, Drs. Rosenthal, Pearle, Mihm, and Feeley. To Jocelyn, Maria, and the nurse that got killed on the Life Flight helicopter in bad weather: you all helped me retain my sense of peer friendships and unconditional love. You kept me going on, from day to day.

Almost 3 years after the car accident, my iv PICC line is churning at 29 cc/hr. At the newest hospitalization 2 weeks ago (I think the total is now 25 hospitalizations since the car accident), for 5 days Dr. Cannom was able to save my PICC line as Neurologist Dr Verapamil (not his real name, but I believe the drug gave me back the lacking cerebral perfusion pressure to allow tiny, single-file, red blood cells to carry oxygen and nutrients to the master computer center of the body, the human midbrain) made a new diagnosis: that of Basilar-type migraine. It is only the beginning of this miracle of cerebral perfusion.

Walk with me and see what I can do. If I can do things, you can also strive to do them. Do not take, "No" for an answer. Make things happen in your own life, as I have. Be the miracle. Feel your body shivering as you get up out of bed and trust in the Lord, knowing that you should have died 5 times in the last 3 years.

Whereas before, I could not get out of bed without taking iv ondansetron, now I can get up slowly and carefully balance on my cane. I can walk! Whereas before, I would have to wait an hour for the iv ondansetron to take effect, now I can brush my teeth when I first wake up in the morning. From being bedridden to being in a wheelchair, to walking with a cane, the Lord has indeed given me the miracle of a walking life.

I can not end this entry without thanking my husband for sticking with me. The words I have to say to him? They are too personal to list here, and he already knows the joy I have in being a family together. I also thank all of my caregivers for their love and patience with me. Even though food disappears out of the refrigerator, toilet paper is missing in bulks of 10 at a time, and a set-aside-to-do-the-dishes ring disappears. It is hard to find a consciencious, caring, actively working caregiver to feed the sick, change the sheets, and help me walk from place to place.

I probably have not been the best patient in the world, but understand that I fought for myself whenever I thought it was necessary, and I used every bit of my medical training to keep myself alive. With God's Blessings, I go now to take my usual 3-4 or 5 hour nap of the day. I envision my brain as it heals itself unto this deep sleep.

If God permits, I will awaken to the sound of the birds outside my window seat, and my eyes will open to watch the baby hummingbirds flitter outside the leaded glass window. For now, that is all that I ask. Once I wake up, I will give thanks to God for another morning, for another evening. I give thanks simultaneously as my orbital muscles contract so that my eyelids go from a closed, to an opened status. I will ask Him for my assignment for the day, and I will carry out my day for Him, with Him, and in Our Lord Jesus Christ.

Whatever lies before me now, you will be able to live through with me as I attempt to share my blessings and my Faith in God. As I am now tired, I will start tomorrow to carry you with me as I walk in my shoes of thunder. Never a dull moment.

You will start out tomorrow by carrying my 5 lb CADD pump for me. I'll tell you the rules of the game in the morning. In the meantime, may I leave you with this parting thought: there are many of you that are not able to keep up with a medical diagnosis, or a special or rare abnormality that the doctors have never seen nor read about, perhaps because it is rare. You can still question the doctor's plan regarding your body, you can make your own deviations with your doctor's consent so that your health care is tailor-made, and you do have some control over your life, your shoes, your clothing, and your money. In the meantime, I'm putting in another bag of iv fluid, and another 9 Volt battery. I will listen to the hum, drum and drip, drop 30 times a minute, as D5NS courses from my left antecubital area into my right superior vena cava. I will listen to it all day and all night, 24/7.

My advice for the day (check with your doctor first): Be the Best Person You Can Be.

Just one day at a time. Take a long shower. Start afresh and walk through life with me. Say one prayer for me. Say one for someone else you know. Prayer really does work. This is not a cliche. I should have been dead by now. The least you can do is to pray for your children, every day. God will protect them and save them from harm.

God wants to use my life for your inspiration, for your nightly peace, and for your future inspiration.

Another PICC line infection

2008-09-01T10:11:00.000-07:00

After going to Chicago, seeing old friends, and then the famous camping out at a neighbor's back yard and sleeping in a child's teepee a couple of nights ago, I have had an awakening. Listening to lectures on the brachial plexus, listening to 'doctor talk'.....it re-awakened a different part of my brain. Everyone says I look much better. I still need help keeping my balance, remembering which of my 32 medications to take and when to take them. Most importantly, it looks like I may have a neurogenic bladder and I have an appointment with a urologist tomorrow. Hopefully, I won't pee in my pants before then. I met a lot of my neighbors, ministered about God with a very Godly man, was inspired by how inspiring my 'story' was to new friends, and was at so much peace to see children and families having such a great time together. I loved singing to the Eagles on guitar by several gentlemen who knew how to play. What follows is a synopsis to catch you up to today. It will be peacemeal, just so you know, since my thoughts go back and forth over this last month.

"Went to a garden party......

You can't please everybody

You might as well please yourself" Ricky Nelson

The single Mom in me, the disabled Mom in me, and to the physician in me. I'm going to start taking better care of myself. At the suggestion of the manager/owner of a local store, I started taking some homeopathic mushrooms to boost my natural killer (NK) cell activity by up to 300%, consolidated calcium with Vitamin D and magnesium (I'm constantly hypomagnesemic), something for imbalance in my system, a natural product for constipation. My new motto, since the Chicago trip, is "Simplify life and maximize health". Really, I just don't want to have a PICC line infection every 3 months. I'll run out of veins.

Oh, boy. Important things to catch up on: bout of cystitis (bladder infection) a month or so ago where I was peeing not only in my pants (hello 80 year old group ;-) ) , but more. I was passing blood and blood clots through my urine (how do you spell P-A-I-N) so much that I have another story for you.

4 weeks ago, my caregiver dropped off a sample of urine at my primary care physician (PCP) that looked cloudy. They do the dipstick test, checking for blood, white blood cells that fight infection, nitrite that the bacteria produce. Needless to say, it was positive, otherwise I would not have sent it in. (I had all the symptoms of a urinary tract infection (UTI: frequent peeing, pain during peeing, feeling like you need to pee after you just did it. In my book, antibiotics and pyridium anesthetic for the urinary tract, go together. So if your doctor tells you that you have a UTI, make sure and ask if you could also have pyridium for the pain. By the time I got to the doctors' office, we had a second sample that looked like pure blood. The nurses were questioning whether I was on my period, it looked so bloody. Since I feel I have a history of not being 'believed', it's a sensitive point for me. I turned to any one who questioned me about the origin of the blood, and I said, "I know the difference between my orifices. The bloody sample came from my urethra, not my v.......a." I love my PCP's office. They call me if I haven't been in for a week, and I call them to say, "Hi" whenever we're not in a crisis together. But I can't help it. Boh. I'll be glad when everyone believes me the first time. It's so cute to see the different things that need to be talked about. The Origin of the Pee. On to other things, quickly.

3 weeks ago, I was admitted to a well known heart institute. My presenting symptoms were altered mental status (AMS) and increased nausea/vomiting. Harbingers of more badness to come, with my peripherally-inserted central catheter (PICC) line about to become royally infected. I never wait until I'm fully septic (bacteria in the blood), otherwise I'd be half-dead in someone else's Intensive Care Unit (ICU).(I used to help run 3 types of ICUs: surgery/trauma, cardiothoracic, and neurosurgical. I am not searching for repeated visits to the hospital, especially the ICU. :-). I know my body and its presenting symptoms. For example, my lungs never wheeze when I get asthma attacks.

2 weeks ago, I was discharged from the hospital after a 6 day stay. I was sent home on intravenous (iv) antibiotics after the 'Grandfathers' of Cardiology and Vascular Surgery waited for the antibiotics to start killing the bacteria. I was sent home on 14 days of iv daptomycin (I get 'red man's syndrome' as each drop of vancomycin goes in, so the precious Infectious Disease doctor removed my need to have a red face, low blood pressure, the feeling as if large ants were crawling on my head, and a need for premedication that makes one drowsy.

1 week ago, we ventured out as a family and went on a plane to Chicago, where we used to go every year before our car accident. (The car occupants were me, my daughter, and our puppy whom we still have). We were there for six days. I awakened.

I'll let you know about Chicago tomorrow. Today's Labor Day anyhoo. Happy to catch up with you and I hope you're enjoying your Holiday vacation. Either by playing or working (which some people have to do to make money). Keep your head up to the Heavens.

Yours in Christ,

Dr. Margaret

2008-08-08T20:26:00.000-07:00

Ran away from home at 16 years of age and moved in with my then boyfriend. Went to school and got my Cosmetology License so I would never have to work for minimum wage again. When I was 19, I had a baby and took off work/school for 10 beautiful months. Received my Real Estate license, and caravaned around Ridgenorth, looking at all the beautiful indoor decor. Went back to college and after 5 years, I was Pre-Med and graduated Cum Laude with a Bachelor's in Arts in Biology from California State University, Northridge. I won 1 of 3 Outstanding Student Awards, amongst other memorable events. Thank you, Skottie, for talking me into being Pre-Med. I'll tell you about that story tomorrow.

2008-08-07T20:43:00.000-07:00

What am I posting, she asks.

In second grade, one of my first memories was that of the dying Jesus on the Cross. It was a very large statue that displayed much detail. I could see and feel the crown of thorns on the head of Our Lord, and I could feel His Sufferings for me. I accepted Jesus Christ and while my life has fallen short of some successes, He has always been with me to provide comfort.

First of all, I am 48 years old. Raised 6 kids starting at 13 years old. Patting my brother's back meant that I, as the second eldest, grew up caring for people. Babies. Precious little ones. I ran away at 16 years old, because by then I thought I knew everything. I knew how to bake an entire Thanksgiving Dinner, make 35 double-decker lunch sandwiches for 7 kids to eat one sandwich per day, and do laundry for 9 people.

I was an excellent student in high school, when I developed as a person and made many stupid mistakes. Just like all of us. Went to an Alternative School so I could have an ID to show the LAPD. The ID gave me permission, so that I could either go to school, or not go to school. Thankfully, my father was praying for us daily. Our Angels protected us as my best friend got shot in the head and was found dead in the bushes. Everyone in the high school went to her funeral, and I still think of her and all the life that she has subsequently missed.

I graduated high school at 16 years old by taking the California Proficiency Exam, then graduated first Cosmetology and then Real Estate school. Ran away at 16 but my ex-husband made me go back to school, and for this I am still grateful.

I was a battered wife for 9 years, and bore a much-loved son. Once in medical school, my ex-husband left with our child, and there was no "Amber Alert" then. I was blessed and deeply touched, yes even endebted to other Christians who taught me so much about life. They know who they are. Medical School was an enlightening time in many respects, and ever so gradually, I looked forward to seeing a life of some kind ahead of me. There were very close friends who understood me and helped me develop my character. I knew God was with me. I broke medical school in half so I could be nearer my family, to help me raise my son. Left an apartment full of furniture, and the medical school wives so kindly boxed everything up and mailed it to me. Thank you to all the Tulsa, OK groups of people I know. At the time, I could not have been in a better place. Alas, I left and drove back to CA in one day's notice. Once in CA, I tried calling two local medical schools.

One medical school said, "No." We don't have any positions opened for a medical student to transfer. The other medical school Dean said, "You did what? I have to meet you." Thank God, I could continue medical school and obtain my MD. During this time, I met a nurse practitioner while delivering babies, and she counseled me very much. I was a single parent with a young child, and she wanted me to pick a Residency program that would 'give me a good life' ... so God arranged a meeting or two, and I was accepted into a prestigious program, that of Anesthesiology residency..

I was handed ICU after ICU patient as a beginner, and learned from the beginning of my training how to provide anesthesia for the critically ill receiving tracheostomy or other surgical procedures. I became so adept at caring for the critically ill, so eventually, I became very good at it. Touche. God kept His watch over me as Critical Care became my specialty, with both Stanford University Medical School and the University of Pennsylvania ICU experiences that could fill a book alone.

Do not ever think that God has forgotten or forsaken you. He will never leave us, even to the end of the earth. Are you surprised that you got into a car accident today? God knew this car accident would occur when you opened your eyes in the morning. If you have given your life to Christ, and dedicate your efforts unto the Christian faith, you will have all the hope that you need: hope for forgiveness, hope for sufferings, hope for healing and for faith in God to keep your life on track.

Forgetting

2008-07-14T19:55:00.000-07:00

Somehow, I wrote a full essay here, only to have it disappear and become unused. I therefore am writing this in one sitting, and fast. I'm almost too tired to write. It is hard to make my fingers do what my b rain wants them to do, and Iconstantly misspell and do typographical errrors.

One of my parameters that we watch: how well I can type. I used to type almost as fast as Richard, now the Chief, Department of Anesthesiology, Stanford University Medical Center. And one of the 3 smartest men I have ever met: the two others are Dr. Shadrad and my husband.

Now, I have lost my time to write here in this journal of sorts. I must get sleep so the little one can get up in the morning and attend the Vacation Bible School. I hope she sees many of her friends from last year. There was somebody I knew who hardly got to wake up every School Year unless he had a stomach ache. No one seemed to know what affect a single parents' perceived 'constantly moving' would have in the future. It is a syndrome. It is a serious issue.

I believe that Disablled people, as I do, start having trouble with poor or extremely different types of forgetfulness. If you remind me to write about this topic later, please do so. I may forget. Just refer to "Forgetfulneds" and "What happened on the last day of fourth grade?"

I can see some of you shaking your heads, wringing your hands in discomfort, and denying you are forgetful. Some of you have to be fired first, or lose money and become broke. You gamble it away instead of purchasing presents for your friends or family and taking zero chances that you will lose the money you worked so hard for. You will then come to know it on your own. Other people see it, but you deny it and/or cover it up. Everyone is afraid of being forgetful because of all the negative social connotations. (Remind me to tell you about fourth grade, of what happened to me on the last day of class).

I'm just too tired. Going to watch my favorite "Private Investigator" show. Maybe I'l learn some hints. I am attending a Mediation meeting tomorrow morning. I am the Complaintant and the other side is our local city association member, I think. Please pray that the meeting goes well to our advantage.

If we win (we are representing ourselves), we will have made some big strides for the Disabled population in our city. Talk to you later.

Disblogged, MD

2008-07-14T17:14:00.000-07:00

Welcome back to our "Disblogged" blog pages! Please see the following for more information about what it is like to be different, specifically Disabled. Realize that the person writing this has a traumatic brain injury (TBI) also. No one told me how to prepare for a Disability, nor that I should ever prepare for it. I barely prepared for College...

Some could say that I beat the odds and 'made it to the top' of my field.

My mother is first-generation American, from Mexico; my father is also first-generation, with Spain ancestry. We were raised to speak English. After their divorce, my father was a single parent of 7 kids during the 70's. He must've been more cool than I thought at the time, but my fondest memory of him will always be with me. He would let us eat a double-decker ice cream cone while it was snowing at nighttime in Big Bear. Flake after different flake of snow falling on my head and ice cream. Cool.

I went to the Alternative Schoool at Granada Hills High, and had a special pass saying I could be off campus any time of the day. Even the LAPD recognized this pass.

I got kicked out of Catholic High School, but not before one of my best friends there had been shot in the head and was murdered. She reportedly had been 'thumbing' a ride and got picked up by someone on a motorcycle. Later, I got kicked out because Annajo gave me orange juice to drink, and eventually, she had me drink a fifth of vodka that it was spiked with. By the time we got to school for a 50's party, I was seeing double. Needless to say, I got kicked out of school. But that did not mean that my life would be a failure, nor that I would not learn from it. I did learn that authority meant authority, and that all rules were not meant to be broken.

I was pleased to go the Alternative School, where attending class was elective, and I think I received straight 'A's. Met some of the most memorable people there.

My first job was at McDonald's, when I was 16 years old. One of my best high school friends got shot in the head and I ran away from home every weekend. Finally, at 16, I ran away and married my boyfriend, who was 27. At 18, I got married. By 19 years old, I earned my Cosmetology and Real Estate Licenses. By 1985, I learned phlebotomy (drawing blood from someone's arm) while a freshman at Cal State University, Northridge. (Thanks, Scarlet, for taking me by the hand and having Rich not only add me on to the class, but employ me as a teacher after that.) And I graduated Cum Laud, going immediately to medical school.

I'll tell you about medical school later.

Eventually, I was Chief of the Department of Anesthesiology in Pennsylvania. I was at a Veteran's Hospital, which is where my love for medicine had begun while I was undergraduate. My Mentor on Life and Medicine was Lois, whose image I desired to emulate: tough on the outside, smart, and caring. Thought I would serve the Veteran's until retirement.

That changed. Then I got in the motor vehicle accident (MVA) and things really changed.

The Disabled do not seem to be noticed. When was the last time you smiled at someone in a wheelchair? I think that human nature and society teach us to find the disfigured and the Disabled as something to be avoided.

It's human nature: you look at me as you see me going in to the same door you are. You are walking fast to get ahead of me, and I am plodding behind you, slowly, and in a walker. One quick glance tells you I am disabled, so you put your eyes down to prevent my eye contact.

Why "Disblogged"?

2008-07-11T20:09:00.000-07:00

The preface "dis" means "not." It can mean "apart from", and implies reversal.

Previously, I was a working anesthesiologist. But I'll talk more later about my multiple Board Certifications, medical school, residency, and Fellowship. And the 100+ hours I worked per week, with weekend after weekend after holiday after holiday being 'on call'. You can watch TV shows if you are interested in the workings of doctors. My story about all that will eventually be told.

In the meantime, let me explain: 1) why I chose "disblogged, MD" as my Blog name, 2) catch you up to date on why, with my many rare disorders, I have not yet died, 3) let you jump into my life today, and 4) see where we are and what we can do.

"Disblogged, MD" is me. A physician who was formerly able, and has been 'dis'abled now for over two years. Eighteen hospitalizations? I lost count. Now 'apart from' mainstream society, with a miraculous chance for physical 'reversal' of symptoms. I want to impart that you can be fine one day and not fine the next day. You may know or care for someone who has a disability. If we go through this together, you (both doctors and the general public) will hopefully learn something new every day, that will be useful to your new life.

The only reason I am alive is because God let me live. I went to Heaven while I was waiting to be seen in the Emergency Room, and I turned back to look at planet Earth. I prayed to live long enough to see my young daughter grow up. So here I am, here for a reasons whose proportions have yet to be determined. You are in this with me.

Today, I saw my wonderful and brilliant Cardiologist. Me and one of my Caregivers, Liz, drove a total of 60 miles for this visit. It was a good visit because I was not laying in the fetal position throwing up into his trash bin. At 48 years old, I feel like I have lots in common with those in the 80 year-old age group. In an out of the hospital, wearing "bladder control" pads for the urinary incontinence, watching things when I laugh too hard. Sharing these experiences with other 80 year olds does not help, but instead gets me into the Bladder Control Club.

Going back just to update you, on April of 2006, I was in a car accident wherein a lady hit me after "blinking" or "sneezing" or something of that sort. There were no brake marks on the road; therefore, the high-impact, torque spinning of my truck caused many injuries. I'm not ready to tell you about them now, honestly. My point to you is this: I had multiple, rare injuries that spanned over months and months of time. I had to learn to be a patient while my brain thinks like a well-trained physician. I had to believe in myself, act as my own advocate, lay my head on my husband's shoulder, and be determined to live for one more birthday. Speaking of which, I called all my doctor's offices on my recent birthday, and thanked each of them for helping keep me alive.

So where are we, and what can we do? As a society, I do not think we revere either children or the elderly as much as we should. I think that's where we are with the Disabled, too. Look at the Disabled Parking spots around you next time you shop. Is there room for you in the Disabled spot? Many times, I am ousted to the yonders and beyond, or my Caregivers tell me to forgo getting my favorite frozen yogurt and we just head back for home.

What can we do? Start off with me and my life at 48. Learn from it, prepare your own life around it, and plan for the future. You will hopefully be 80 years old someday. If, before or after then, you are also Disabled, the world should be more prepared to let you live. To live at your home before requiring a nursing home, to prevent your accidents, and give you the dignity you deserve.

Good night. I have to pee again.