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. 

June 26, 2009 Saturday in the Park

...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.

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

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.