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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.

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.

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

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

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

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

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.