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.