Health Care Improvement: What You Can Do for Yoursel

Friday night, 11:00 pm and a car just pulled up outside the front walkway. We have a snoring husband, yes we do...and a beautiful person between us, who was made. I heard the news that two families were struck when YT murderers captured, killed, raped two girls from two separate families. I listen to the gentle whispers of the little person, as I hear one car door slam shut. Ah yes. Footsteps. I see outside and follow the pace of the klickity heels as I realize it is my sister. The dog, at least one of the dogs, feels it necessary to bark at her as if she was a burglar, but then....it is good to have her here. And her family is quite close to ours.

Tomorrow she runs a nonprofit organization's activities, donning clothes for a cold California night out on the grass on a high school field. And 100 groups will be there to compete against one another. The first thought that comes in to my head is that we need her to become part of the nonprofit organization...and we can help more people with dysautonomia.

We have someone moving from New Jersey, and a couple moving from Oregon...taking a plane and saying goodbye to the old life that God so generously gave. Boarding a plane to a destination of which these people have placed themselves in their own mission. And in the mission God has started for people with dysautonomia.

We need prayer...churches...prayer groups....companies...groups...individual people. We need them to care about what we have, and allow much more room for early diagnosis. Does any one seriously think that ... oh, I just want to be passing out and fainting oh, let's say about three times a day? And oh, I'm otherwise young and vibrant, but I can not climb a flight of stairs? The prayer needs to go as this: Father, please open the doors that need to be opened, and close the doors that need to be closed for this effort. Bring us together in love and miracles, stability and nesting, instead of strife and wrestling to stay alive one more day. And oh, can you find me a place across the street from an ER? This way, I wouldn't have to drive too far if I felt like passing out, and...oh, this is good: there is nothing else I've ever dreamed of, rather than living across the street from an ER!

This is real life here. It is real life for a mini-exodus to Dr. Cannom's Office in Los Angeles, in HOPE and with HOPE that someone in this world knows what is going on and is available to help.

I went to a Tilt Table Test (TTT) with someone recently, and it was a pleasure to be there. Nice, new hospital and smiling employees showing us their pearl-white teeth, we were allowed to go visit her in the recovery room right away, as she just passed the TTT. Provided simple, human comfort and a sense of comradery, that she is not alone and that others know what she is going through.

I started writing another book. As I choke on my nutrition supplement once again, I can't help but wonder how much 'pocketed' food there is in my upper airway. Sometimes I cough chunks of oatmeal after eating oatmeal. Ewe. I know. But I can not help the truth.

Two things I would like to leave you with tonight:

1. To all females: consider taking a tall male with you to the doctor's office every time you go. In my opinion, you will get better medical treatment because it is still a 'boy's club'.

2. Hand the doctor a type-written list of medications, doses, frequency, diagnosis, doctor who prescribed it and his/her contact information.

In my opinion, you will raise the standard of medical care that you otherwise would have received. You wonder how health care is changing in our country? And what you can do about it? In my opinion, you need to be a professional patient. Come in with your medication sheet and your Procedure list (e.g., shoulder surgery, etc.) and 'Lo and Behold!' this patient even came in with copies of their radiology studies (e.g., MRI, CT scan) on a stick! Now, this is a patient that knows what the doctor needs to put together the whole picture. No bits and pieces missing. No wasted hours/day writing down prescription drugs and dosages on the medical record again. This could have and should have been double-checked before you left home. If you show up with current, organized, 'doctor-language' information, those in the health care jobs will be scratching their heads as you whisk out of the door. Now you can guess, can't you, that that person will have streamlined his/her care? This allows focus on matters that need discussion, matters that may have taken two more doctor visits to figure out, and wala! you have provided all the necessary information that the doctor needs to determine your diagnosis and then your treatment plan.

Anything that 'spoon=feeds' the doctor, that does not waste health care time and energy, will improve your care....as with having your medication list ready, your insurance cards, your Procedure List, your list of other doctors...I put copies of samples of each of these handouts for you to give to your doctor....they are all in my book, No More Tears: A Physician-Turned Patient Inspires Recovery.

Thank you God, for working in my life. Protect my family. Help the nations. Guard over our Troops and thank you for the food on our plates.

Postop Day # 18 S/P C45 and C56 Anterior Fusion

Maybe it was C56 and C67...I am still recuperating and it one day at a time, and now one breath at a time that brings be into situation after situation. All in all, each one is a success unto itself.

Our nine-year Wedding Anniversary was 2 days ago, on April 8. 2001. What a fine day to remember, a day when it is 'all about the bride'. Hidden and secret family scandals occur, both prior and afterward. We danced and celebrated at a time when 'we' were a 'we'. Everything in the family seemed fine, and it seemed that nothing was terribly strange or out of order. New babies. New friendships, old friendships coming from all the places in the world: USA, Canada, Mexico, Puerto Rico, Chile, and such a whirlwind of time. A whirlwind of people. A whirlwind of romance and beauty and the future and a long life together...on that day, I was the Bride. Mike was the Groom. It was our time. We had it.

And then life happened. People at my place of employment made the mistake of trying to get me to change to practice less than 'the best' medicine at the Veteran's Administration in Karsin, CA. What should I do? What would you have done? I followed my God and my ethical conscience, and I tried. I did the best I could. Until it took such a toll on my life that it was causing me to implode. Two choices, right? Fight or Flight. I can run away from it all, or I can stay and fight. I know that I have always been a fighter, but one has to recognize that there are different rules to different fights. And that people lie. And that getting a group of people to tell the truth, to change from doing bad practices and to instead put the dignity of the patient first (foreign concept to some).

Bitterness, resentment, horror upon horror until even a murder occurred. But I fought. And I had a couple of lawyers that moved through forests and rivers to fight in my stead. Like having big brothers to stick up for you, to ask the questions that need to be asked. Another lifetime itself.

My children becoming objects of my passion for life...my husband and family together defining the 'real' me. The Martha Stewart that was always in me...it came out full bloom until BAM! Car accident, traumatic brain injury, vertebral artery dissection and aneurysm. Then PICC lines getting infected time after time. Time after time. 28 ambulance visits, just as many hospitalizations and WHAT? It just can not be true. It is a mistake of some kind.

I'm actually sitting at a large conference room table. Not an Ethics Committee meeting or a Student Health Advisory Committee meeting. A brain injury meeting, and my peers are sitting around me with halos, hard collars, wheelchairs, and straws. In my usual world, I was the one standing and giving instruction, giving teaching aid, giving lectures. But there was a lady there, one that was doing just fine ~ I know I could do her job. She was the one that was telling me and all those around me, how to keep lists so we don't forget our medications at home. Huh? Wha...t?

Now I am sitting here today, a shadow and a reflection of those who helped shape my life. And sitting here thanks to God. Putting thought to mind, from mind to fingers, from fingers to typewriter. Together, these random strings of letters become words that become real to you now. As you read I am tantalized at what you will hear. What you will interpret. What you will mistinterpret. What I will say wrong, or less delicately than one likes to speak or think.

But I've seen too much. I've held too many dying hands. I've stayed up with too many people who were dying, alone and slowly in their beds. And I can go on with my life, knowing that I did the best I could. What price have I paid? Lost friends and family, kept those that lasted the years and were based on love, loyalty, and actually knowing a person. Knowing that you can speak with confidence if some one relays some juicy gossip; instead, you dispel the story with your own eyes and your own ears. It is the truth of who you are that everyone sees each day. Go home and kick off your shoes. Again, show us what you are really like, as if your life was on display for God to see.

Perhaps earth is, as TJae said it, a 'testing ground' for all humans. From our lives here and how we live them, it is then determined where you will spend Eternity. I've never heard a sermon on a subject of Testing Ground...but isn't that what it really is? How we act to the homeless man begging for a drink of water; whether the sick and disabled come to your fancy parties...how you treat the person who empties your trash can and cleans your toilets...perhaps it is that this is the 'testing ground', and every day is a 'test'. Maybe I should study more.

In surviving medical school and training as a single parent with no child support, after surviving a car accident which left many doctors scratching their heads in wonder; after surgery to my rotator cuff and now surgery to my cervical spine. I can not hide the slit in my throat where the surgeon went in. Now I am wearing a tattoo of sorts, plastered on my throat. To show people that I am one tough cookie. To be a witness to the Lord. To succeed in all that I do, all that I ask of my God. I thank God for yesterday and as I choked on a piece of rice soup while talking on the phone (won't have that combination any more)..I was choking. Upper airway. Iatrogenic. Self-induced because the bite that I took was too big.

I have to remember that I can not swallow as in previous times. The food can not be chuncky; it must be blended and moist. With each swallow, a trickle goes down the trachea, probably following straight down into my lung's right lower lobe. How much time should we give before taking a chest x-ray? One day at a time.

That's all we can do. Pray for those who are sick. Help those who are in dire need.

God, break me and blend me into your person, the person you want me to be. For to live, it is to live for you. Without you, there is nothing else. With you, mountains can be moved and things can change. It is this deep hope, this buried belief, this rock of salvation that provides my hope. God, please make sure my words do not fall on deaf ears. For I know that even deaf ears can hear.

I won't be talking on the phone and eating any more, folks. Whew. Learned that lesson and I only need to learn that lesson one time. I thank God for Martha and her team of doctors who kept checking on me, to make sure I was okay. Now I may sleep, knowing that tomorrow will be another day and that God is with us in all things. Hoping that if your eyes are able to reach these words, that God blesses you with insight and 'fight'. If earth is Testing Ground, bring it on. I can show you just how deep my head is buried in the loving arms of Jesus. There's room for you, too. Come, sit with us.

Thursday, April 8, 2010 9th year Anniversary

Wow. I'm going to start writing a book, but I'll do a shortened score here before moving onto new ground.

So Dr. R died......a soul and a heart of a man. He was the second smartest guy I ever knew...first was Dad; then Dr R.,; then my Cardiologist, Neurologist, and my Neurosurgeon.Then my husband :-). X-ray findings of MRi of the neck: guy was surprised I could do as much as I did. I had taken a nap before their arrival. I wondered if I would ever be happy again. SLAP! Gave myself a mental slap and was my repetitions, my thoroughness, that made things happy.

Little one is a crazy and smart-spoken little tennis ball of life. She remembered to breathe....using her leg muscles to hoist self up......to POOF! fix the situation with her powers of magic. I'm going to bed but Micheal, did Carlos play very well? He was always such a cool travler..thank God I have people that walk up to me and ask if I need anything...but the other side of the doin is the 'safe' side and if nothing came out, ok. then it's CooCooPuffs or pancakes for dinner.]]

I have no strenth to talk on the phone very well. But I will tell you that I accidntally gave one of the puppies her name on a pin.Now it is lost, so what is her name?""Another wicked witch theif took my sewing scissors and got ho t glu eon the..and washed my car......'no wonder' we work so hard.

Am sure this is full of salmon salt flavoring and their refusal to let us drink water! Talk about medical school LOL and will let me see it together. Time for sleepers for the night. if I wake up, i have difficjlt color toprovide myself...so I'll try to findit before going to bed. God Bless You and Good Night.