So I Keep Dreaming

..and I just got off the phone with the police. Stolen personal property from home again, sad to say. Ah. Well. On to better subjects.

Now Grandma knows how much more I need her, and I hope she moves in with us. I just dream of having a wonderful home and family...of creating memories for the keeping.

I'm stuck in bed and can not get those cinnamon rolls in to the oven in the mornings....my dream is that we could have some one here who really loves us & it's a little bit of a bummer to think that people who work for you would think of taking the last penny out of your car.

So here I am, melancholy. Still believing in people, still hoping for another miracle, still watching mankind around me to see the things that are worth fighting for. I guess I am very competitive because of survival....and now I'm understanding survival much more. And understanding people much more. And doing what we all should do: appreciating family and hoping for good health always.

I'll let you know when Grandma is here. I miss her.

thanks for reading thanks for caring thanks for sharing thanks for just being yourself.

Grandma is Here

May 25, 2010

So with Grandma Theo here, I tried to fix up the house a little. Concentrated on her room, placing a big bed in there and a comfortor set that makes you want to crawl into bed and stay there with a fireplace, chocolate milk, and chocolate chip cookies on a cold, rainy day. It has been gloomy and sprinkley here for the last week, on and off. Every time I see the clouds, I think, "1. Yeah! I can go outside and not get sun poisoning!; and then 2. Yeah! the roses and the garden love the sprinkles, especially when it is in the form of a mist that one is walking through.

Grandma has been wonderful in her company, in her style, and in her presentations. She has presented us with my husband's favorite meal when he was a boy. Oh and now today is Irish day, so we're having cabbage and that marinaded corned beef. I can hear it and smell it and guess what?

I can eat it. Yesterday, I decided to be bold and see whether or not I could swallow one of my daily pills. Amen and Amen! I did it! Unless you have been in the situation, you have no idea what it is like to not eat. And after cervical spinal surgery, I was unable to swallow my pills for almost exactyly 2 months. There is nothing more bitter, more yucky and more simply nauseating than awakening to have to eat crushed pills. It was a new 'low' in my life, an unexpected one. Just when I thought all was getting better....wham!

The slit on my throat tells tales of bar room fights, however I joke and say, "you should have seen the other guy." My throat was a hideous slab of raw meat, it seemed, for weeks after the surgery of C56 and C67.

And then I went to kill a mosquito. This thing was HUGE, and it scared the living daylights out of me. It was instinct, jurisprudence, and the magazing in my right hand. In slow motion, I set out to throw a good punch. I lifted my right arm, made that extra !Umph! bend posteriorly, for greater speed (F = M x A) and acceleration in my wild attempt to get a bug out of the house. I was still in 'panic' mode when, as my arm thrust that last burst of speed, my right foot silently but ever so completely...it fell out from under me.

I was in mid-air, with nothing to hang on to, nothing to crasp at, nothing to reach out for, no hope in sight. And I was falling onto hard wood, no carpet. This I knew. As my body was pivoted in the air, it seemed as if an external force swayed my pivot towards the left, and it kept me spinning ever so slowly as I started to descend to gravity's eventual plight.

I fell.

Smack. I didn't want to land on the tailbone, as I did not want to fracture it. So my body leaned forward, providing the impact site just at my lower back. From there, the Forces still had me falling backwards, and in 2 seconds, a sequence of events happened that saved me from injury. From the impact onto my lower back, I put both hands out, trying to protect my head and neck. Elbows hit, hands hit, back of the head hit. Thank God, that last one was ever so slowly and ever so medium-hard that it was not a huge crash or bang.

I look back now, as Grandma was cooking in the kitchen. She wears hearing aids and says she has bad ears, but they really are not that bad at all. She heard me fall from the next room, and she could not see me. So she ran in, then my husband ran in,...the rest is unimportant other than I was okay. Sore neck. Sore lower back. Bruises here and there.

I could have broken a hip. I could have hyperextended my wrists, or broken an arm. Could have fractured my pelvis or femur, could have sprained an ankle.

Just the lower back and neck pain persists. I should shut up about it, as it is nothing compared to what it could have been.

When we wake up in the morning, we just have to be thankful for each day, each morning. I hear the birds and the wind chimes, and I see the faces of those most dear to me. I long for my mother Renee and am glad to have these women in my life.

Just another day, just one slip. All is well. And I can eat. And swallow pills. Life is good. I am grateful to God for hearing my prayers, I am grateful to my angel for protecting me, and I am thankful I can make one more entry in this journal. I hope you open your eyes in the morning and are able to thank God for one more day, one more privilege and opportunity to see God.

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.

Funeral Day with Grandma

March 18. 2010

Woke up this morning and aim to take a nap briefly. Ewe. Got my first 'weird' mail today, and someone at the 'prayer meeting' part of the funeral actually was, it seemed to me, speaking the politics of Israel and the Palestinians... it was a cultural clash of deadly reality as some one screamed that we .."need to keep the hate in our hearts.." I'm still in shock. Do I live such a sheltered life? It seemed that I had stepped in to another realm, another country, another culture...but this one seemed to reinforce 'hate' as being of historical value. Whoa.

The deceased's name was not mentioned once that I could hear, and I just could not take it any more. My soul wanted to scream, "..but she accepted Christ, and she is in Heaven...". I paid my respects now, when she is dead. And I also, and more importantly, I would say, is that I did this: I paid my respects to her while she was alive.

Over the span of about 20 years, we ate many Thanksgiving dinners together, and visited for Christmas. The lovely spouse was always attending to this or that...clearly they were both in love. I am so glad we did what we did for this person during life. After death, it is too late. Yes. That is true. And I expect that another level of ugliness will surface with the will, the inheritances, the estate...the person's legacy, other than what is most important: the love and caring one shows to another.

Going to surgery in 3 days...the countdown has begun. That weird message? GoPetition.com for increased awareness of dysautonomia...signature #1581 is inappropriate. It is the first such note, and an investigation has begun.

If you do not have anything nice to say, please don't say anything at all. Our Petition is the real thing. To my audience, I apologize that this was written.

Please help us increase awareness for dysautonomia. Please see how many signatures you can get, so that I know how it is growing as I awaken from surgery, and take each day of recovery to its best place. The Team appreciates all.

We pray that this person becomes repentant and focusing on God. I never want any of us to stray...to stray away from that which is beholden to us. We are a Team, and if one of us falls, we leave no one behind. Perhaps someone can find a way to minister to this soul; for that too, we pray dear Lord. Amen.

Highest Regards,

Dr. Margaret

7 Days Before Surgery

March 12, 2010 I think....but I know it is Sunday.

Little one with fever, now Mom with sore throat.

Wake up and check on little one all night, keep fever down.

I'm so tired I can't type any longer, for fear that I will not make sense. Just need to catch up on sleep.

God is blessing this household with different 'Circles' that seem to be coming to a final close. It is conspicuous, as well as the following: every time we go somewhere, there is no line and we are the first to be served. Then WaLa! once our transaction is complete, we turn around. And stare at the ground. Because there are so many people waiting in line behind us, that we arrived at 'just the right time'. I don't know...

Did we arrive at the right time,

or

Was the time already laid out before us, with God knowing we would take this as a sign of great comfort...great comfort that we are a Team...and just like the Marines, just as we are sisters and brothers on this Earth (and in God's holy name)...one person can not be left alone. If one person on this Team has a problem, the rest of the people on this Team jump in. Just like when I was in medical school. No one is left behind.

I left Oral Robert's University School of Medicine abruptly, with only my 3-cyliner Chevy Sprint, an envelope with a Dean's Cover Letter of Reccomendation. And a gold seal, to ensure it was not opened. It was an ornate gold seal, astonishing in its presence. As if it was a letter from the Phantom of the Opera, or some General in the military. But I knew that God was behind it, as I first called UCLA and then USC to tell them what I just did: left my apartment full of furniture and drove back to Los Angeles so I could have family support. I left medical school with this piece of paper in my hand.....and was trusting that God would take care of me, no matter what the circumstances.

Living one day, one hour, one moment at a time.

Pure, unadulterated trust in God.

What would you do? How would you feel? Would you reach a place of peace, a place of blind trust, blind faith that stares you in the face? Decision time....this is a fork in the road, I know. What will I do with it?

I can tell you one thing ~ I know that I am not alone and that God will care for me.

This is the kind of confidence that I want you to have.

Well. This Ought to be Fun

March 10, 2010

So with impending surgery, let the plans begin. This is actually the first time that I will be taken to the hospital without going to the ER, without having an ambulance...except for my rotator cuff surgery one year ago. Now is about the time that you learn yet once more (yes, once more) who your friends really are.

Going to the hospital? Family emergeny? Well, I need to go out of town. Well, I have to go for a check-up (that could be done any day). Well, I'm canceling our breakfast plans. Well, call me if you need me. (How empty is that?) Well, let me know if you need anything (well, won't I be injured and recuperating? I don't think I 'll be interested in picking up the phone). Well, you can come over my house and see me before you go in for surgery, (huh?) Then there's the:

I'm leaving my house and locking my door and coming to stay with you and be with you day and night. I want to be up with you the whole first night you come home.....and take care of you. I can do such and such for you, so don't worry about this. I can also do that and that for you, so don't worry about that.

I always wonder who is going to say what. Who are the ones I can rely on..that have a history of helping..and/or who is different now...who has new love for me so that I can expect this time to be different? Who can I count on? Everyone is busy with their houses literally falling down, or busy trying to keep a job they can not afford to lose. But some people know the true meaning of life, and some just don't see that they don't see....and then there's Grandma.

Which will it be? Excuses, false lullabies, truth...and anything can change at any time, because....each day is different, and the days never follow our plans for the day. There is always the unexpected, the pivotal, the emergent....layers upon layers so that in the end....who will be there for me? Who will be left standing amongst all the 'troops'? Only time will tell.

Grandma is moving in. What a sign of comfort, caring, compassion, and an unhesitating willingness, to live for another person that you love.... to accept this responsibility when she already has many of her own responsibilities. She will do everything. She will be kind and loving to our daughter, and her role will be to exhibit the love of God for all to see. She will speak the truth and she will perform her promises as a gift, not a chore.

For this I am grateful. Already, 12 days before the surgery....I have seen people insert themselves in my life, or go on with their regular lives, or close a blind eye to all that abounds.

So, it has begun. Grandma went shopping with us for a new bed for her room, and it was quite a delight to just be out of the house together. Choosing colors, styles, textures, sizes.....as if we were the preverbial cavewomen seeking to "gather" before the storm. We actually ate lunch out of the house, and drove to the other side of town. For me, it was exhausting to even walk around the storeroom, but I sat and observed as my breathe became too puffy. Watching them open and close 6 different beds, contemplate the size with respect to the room, looking and feeling the texture of the different fabrics: leather or suede. Red or tan. Fancy or plain.

I watched this process although they thought I was just resting, and I inserted my two cents worth at every juncture where a question was asked. From afar, I used sign language as either a 'thumbs up' or a 'thumbs down' vote on the question at hand.

We ate, or else we (I) would have shopped until I dropped...food. Sustenance. I could feel the energy going into my bloodstream...perhaps that was the carbohydrate or the glucose. My hands were still shaking as I picked up my last piece of fresh cheese pizza...but I could put my head down and know..just know..that I would start feeling better.

I stumbled in the dark last night and bumped into a stool. My chin skin ripped just a little, and it did not scab or bleed. Wow. The blood thinner I was told to stop? It is already reversing the blood-thinning aspect....so I must not become a blood clot. I have to drink and drink, to keep up the 'low blood volume' that goes along with dysautonomia.

So today I am pleasantly pooped. Making arrangements to have love in the home....goodnight.

Grandma. We