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