Day #15 off iv Infusion

Definitely feel more light-headed today. More of a sense of being on the cusp of hitting the 'wall' that throws me with my head to the floor. This is when I need blood in my head, and when I can feel that there is not enough blood flow to keep me standing up. 

Yesterday, I saw my former and current mentor, Dr. Rashad. As we ate tacos and burritos, we all laughed at who could eat the spiciest and hottest peppers. I remember back during Anesthesiology Residency, when Dr. Rashad would look for the hottest peppers to eat. I was amazed, encouraged, and enlightened to see him. God has truly blessed my soul by allowing this doctor into my life at this time. He was such a big help to me in residency. He believed in me, and in my intellectual capabilities. He was nice to me, relieving my OR case so I could do my preops for the next day. Like my father, he taught me to give. I am so glad to be a part of his life, and also to be a part of his girlfriend's life.

Today is Tuesday. Finally got a pair of broken glasses fixed, and saw my PCP. Take a little blood here, give a little shot there. I stumble out in exhaustion, walking slowly upstairs to my bed. Each step accentuates the quadraceps muscles, and I lift heavy leg after heavy leg up the stairs. 

I can go to sleep now. My prayers of thanksgiving have reached the Lord's ears, and God already has my whole day planned out. Nothing will happen today, that will be a surprise to God. I accept His world that is now adapted for me. IV bag or not, hum, drum, drip, drop. 

There is nothing to listen to, because there is no CADD pump connected to me. I am still in shock when someone sees me and notices that I am not connected to an iv bag! I am still in shock when I can stand up from a chair, reach back, and NOT have to pull out the bag, the iv tubing, and the CADD pump out to make sure it does not BANG! onto the floor.

No more pump. No more iv tubing. The PICC line is in my left arm, and the tip lies in my right superior vena cava. When they pull it out, there are bound to be some thrombi (clots). If a big one floated up to my heart, it would then leave the pulmonary arteries and travel to the capillary: alveoli exchange of the lung. There must be some chance that a clot could then get stuck in my lungs, collapsing the distal lung ahead of the clot. But no, God did not put me through all of this to have a simple ICU complication end my life. Somehow, I think that God will let me die peacefully.

Day # 13 Off iv Infusion

Yesterday, Saturday, flew by and all I remember is that my right shoulder was in so much pain that I felt like crying, throwing up, and fainting, all at the same time. My Caregiver made certain that I got all my medications, all my meals, and that I actually had a spa of a feeling, which is a simple bath.

Once a person is disabled and requires assistance with the Activities of Daily Living such as assistance getting into a car (transfer assistance), the whole household will permanently change. One step at the front door is converted to a ramp; this is repeated at the back door, too. Handle bars at every step in the house, sharp corners all rounded. We can talk about that later.

Today is Sunday. I woke up at 11:00 am, feeling wave upon wave of ... grogginess...upon me. Perhaps I was just too tired. Perhaps all the prayers put me into a coma of sorts. The kind of coma that God causes, as He created Eve from Adam's rib. I felt as if I was receiving anesthesia gases, and each time I awoke during the day, different kinds of consciousnesses were upon me such that I felt that I was waking up by accident, or only for a fleeting moment. But no, this calm, warm, toasty bed and the sheets and lavendar-scented room. They beckoned me back to sleep in less than one inhalation/exhalation cycle.

8:36 pm and I feel that I can sleep another 12 hours. Praise God for chemists and pharmaceutical advancements that are there to alleviate the sufferings and the pains that the human body may undergo. Traditional medical pain pills have been a key trigger that have helped my shoulder pain. As is commonly done, I would take my pain pills first and then better tolerate my physical therapy.

When I suffer, I think of all the suffering that God allowed His child, His Son, to undergo. I do not understand why there always had to be an option of suffering. I used to spend nights wondering how God could contain Himself, knowing at all times every rape, every murder, every battering, every suffering of a child's empty stomach. I'm so glad that God is God, and that I'm not God. Or you :), for that matter. Why did the Old Testament God require slayings of animals as blood offerings to Him? Is someone really allowed to suffer for someone else? If that is so, I dedicate my sufferings to Christ's sufferings. One would think that God would be surprised, that I would want to do this. Much as we were first surprised to know that God allowed Christ to suffer for us. Why should you or I dedicate sufferings to God, or to Christ, or to our Mother Mary, for that matter? It seems magical, but apparently God allows sufferings to be dedicated.

Today, I felt dysautonomia taking me over. I just walked bent forward, to keep my head lower to the ground. More blood to the brain. Then I won't faint, or have syncope. I felt so weak that I had to sleep. Fatigue, severe fatigue as if my body was too heavy to move. I slept through my medication regimen, my meals, and my senses. 

I can not type any more. Yes, even the extensors on my fingers and forearm are sore, and I could use an ice pack on my shoulder. Off to pray for my children.

My father prayed for us, his children. Each of us could have ended up with a bullet in our heads, just like my best friend. I believe that God holds in great regard, the relationship between a mother and a daughter. I am so happy to have spent such a day today, with my son in good regards, my daughter in my presence, and my husband close at bay. Peaceful, calm, relaxing and natural.

Goodnight and May God Bless and Keep You at His side.

 

DAY #11 with no gtt

Busy with doctor visits, telling friends and neighbors, pastors and the public has been draining this week. Fortunately, my .. I like to call him my neuropsychiatrist because he help me with my head so much, Dr. Dashing. Busy drinking water and juice and water and water, to simulate being on the iv.

Realizing more and more each day, how I am still in shock about my miraculous recovery. People tell me I have an aura and I feel as if the Glory of God is radiating from inside my heart to the periphery around my body. Each day, God shows Himself in our lives. "Coincidence" occasions line up daily, as if God has taken a huge turn and my relationship with Him is irreversible and gaining strength. 

A couple days ago, we had an incident wherein Mother called in right when my child was screaming in pain. Here I'm trying to reassure the screaming child, Mother is screaming on speaker-phone so that the granddaughter overhears Grandma yelling at us. My Personal Assistant(a) and I are laughing so hard as we watch the glow on our child's face. She is glowing because she hears Grandma screaming to me and the Assistant, with great passion for the child and great impatience with us. She sees that Grandma is 'on her side' and a sparkle comes to her eyes. A sparkle of a firework sinks in: someone cares about me so much that she will yell and fight for the child How wonderful it makes my child feel, and how much of a boost of ego she will have just knowing that someone cared enough to advocate for a helpless child.

I have redefined what it is to have a traumatic brain injury (TBI), because I know the neuroanatomy and the neurophysiology of TBI. Because previously, my brain was so high-functioning, now I know how to describe how 'differently' if thinks now. After the accident. After learning how to start talking about a subject, 'derail' for a moment, and then getting back on track. I feel as if I do this much more often than usual. Perhaps the better I get, the more sensory input my body feels.

I am still in shock. I'm still on 23 or so medicines/day, remain orthostatic and lightheaded when I stand up. My PICC line is still in, but is getting itchy at the insertion site to the skin surface.

Off to try to sleep. Soilent Green. Alternative School, running away from home. I feel as if I just woke up from a coma, and am realizing who I am. Perhaps this happens to everyone who has undergone a head injury. My worst day was when I was sitting around a table of brain-injured people at a group meeting, and I was sitting in one of the chairs around the table. I was one of them. I'm supposed to be the one standing up, teaching this class. Sadder still, I actually learned some guidelines that have helped in practical life. I could not believe that I was now one of them and the enormity of it all was not fair. Someone should have provided counsel to me beforehand, explaining to me what the group meeting was about and how I would feel.

PTSD? Yes. Overwhelmed, in disbelief, and shaking my head side to side in disbelief. I knew that I was really, really, smart, especially after completing my USC, Stanford, and University of Pennsylvania stints in time. It was the most sorry that I have ever felt for myself, this realization and epiphany that I was now status post brain injury. Good thing I started out really, really smart. I believe the neuroplasticity of the brain will recement a new line of communication, neuron by neuron. 

God is so good. Last night, we asked a store to remain opened for us a little after closing, and the man awaited our arrival. In short, he grew up in a family of Pastors, and this store owner grabbed my hand over the counter, and started praying and crying at the same time. Praise to the Lord, as God was able to send out the message that I am a miracle. I fall to the floor in great thanks and humbleness as to why God chose this Path for my life. It is as He chooses this Path, the most blessed adventure in retrospect. My Path is still being formed, as is yours. I just started with a statue of the crucification of Jesus in second grade, dedicated my life to God, had my father praying over his children daily, and lastly, I give my sufferings to God, as a token for the pain that Our Saviour underwent for me and for you. It is truly an awesome thing.

Off to sleep. Have to check the medical stability of a relative, speak to another person's doctor, and get a feel for whether or not this relative will die soon, or not. My Blessed Aunt, whom I used to wish was my mother.

Highest Personal Regards.

Day #6 Off a Continuous Infusion

We went to church today, several days after our pastor at First Baptist had interviewed me regarding my overwhelming recovery. After listening to a string of regularly-scheduled items such as daycare, a book written by a survivor, and other odds and ends, the human being in me was miffed. Miffed because I had been selected to be one of God's miracles and a great balloon of Praise, Glory, and Witnessing was subdued and internalized in my soul. I wanted to sing God's praises and tell my story to the church, because I was overflowing with the magnitude of God's grace. 

I was wearing a poncho with tassles, and I asked the Pastor to pretend that he was my iv and iv bag/pump. Quickly, I ran carefully up and down the aisles. I praised God as I  had my freedom from the iv now! Freedom! I can run to the left! I can run to the right! I can suddenly stop! I can turn around and go in another direction any time  I want, and I don't have to keep track of my direction, my iv tubing, or my iv bag. No more batteries that run out and stop my iv pump. No more bags of iv fluid to keep blood going to my brain. Thanks to God, and thanks to Dr. Verapamil, my neurologist of my cardiologist's selection. For about 2 weeks, I feel much better!

I use my cane so as to prevent falling or imbalance. When I stand up to move to another seat, I subconsciously feel for my iv bag and tubing, since I am in the habit of treating these things as if my life depended on it. My hand goes backwards behind me to feel for the tubing, and I remind myself that God has bestowed a miracle upon me.

How does it feel to be a miracle? It feels the same as having faith and confidence in God, as if He is in control of my life. He knew this would happen. He knew it long ago, and He saved it up for a surprise for me. And to be a Testimony and a Witness to God's promises. Having been 'raised' Catholic and then 'reborn under baptism', I always had faith in God. He has worked some incredible stories, wonderful additions, and inspires hope. Now, I could serve as a testimony, and I feel like I am now 'a grown up Christian' as I lean on God from day to day.

Lunch with mother turned into a fantastic lunch with my caregiver, and with Renee's other daughter, Rita. We ate golden rice and peas with dill, as well as turkey patties. To the right was the Griffith Park Observatory, and to my left was downtown Los Angeles. Views out of every room, memories of past times, and sorjourn love. Broken, fractured arm and boy. Do you ever find out who your friends really are.

Message for today? Bring God into your life every day. Thank Him for all you do have in the shelter of your home with a wireless server , especially if you can. Live each and every day for His Will, not yours. Expect changes to happen, because He knows what you need since the day you were born. Life is what happens while you are seeking to plan your life.

Ask for Open Doors to open at the right time, and for Doors that are supposed to be Closed by God, to be closed at the right time. Thank you for blessing us as we Praise Your Name and your righteousness, even if (and especially with) the sky is falling down upon us. You still hold us in Your hands. Thanks be to God.

Day #5 Off a Continuous Infusion

This morning started with a jolt. I was under a 10:00 a.m. deadline to have my child and her sweet sleepover friend ready to leave the house then. What did I do first? Got these little critters up and awake by promising they would be served fresh Mickey Mouse pancakes hot off the griddle. Placing blueberries in the batter, my daughter looked at me with a face that said, "Yuck."

No sooner did they leave, when the dog escaped from the front yard and started following a horse trail. Innocently, my caregiver and I started walking along to get her. She thought we were in a fun game of 'chase' the dog. No, we just wanted to leash her up and take her home. We were bitterly awakened when the trail led us past several dogs that looked cuddly and innocent. Oh no. When they started barking, huge teeth glared at us as if the dogs had not eaten in a week. We got out of there as fast as we could, but I can only go so fast. Thanks to God, we made it home in one piece and by then, I was so exhausted and thirsty that I thought of drinking an ice cold beer. My heart was beating so fast that I could feel it in my chest.

Later, my right shoulder received excellent stretching, and my soul received much cheerleading as my caregiver Patsy patiently went through my physical therapy routine. Despite the pain mediation I swallowed an hour before stretching the shoulder, I was in great pain as we tried to get my arm to lay flat on the bed. For half and hour, we pulled and stretched until I just couldn't take the pain any more. For those of you that know me well, you know it must have been excrutiating  pain that I endured. Otherwise I would not complain. I mean: it really hurt.

But pain is gain, no? Yes, especially in this postoperative situation that requires pain to gain range of motion to the shoulder. My physical therapist was so encouraging and serious about my completing the therapy, to loosen the back quadrant of  the shoulder capsule. Without fixing this problem, it is possible that I would never be able to do the crawl stroke again, avid swimmer that I have always been.

I didn't go through this risky shoulder to have an incomplete healing. I have, and I will continue to seek the help of my physical therapist(PT). I thought I could do a lot of this therapy on my own, but I was naive. The therapist has to try to get me out of this situation that I got myself into. Of course, I went to PT much later than I should have, considering the surgery was on January 7 and now it is nearing the end of March. But these things happen, so we pick ourselves up and dust ourselves off, jumping into PT late. I am so thankful for the therapist's patience with me. The worst thing I remember, the thing that threw me down to my knees to ask for God's mercy, was: the pain.

I took my nighttime pills and sat to make a journal entry. To the right, our daughter snores in her little mixed up head full of grown-up problems, like, "When am I going to die?" Downstairs, my husband watches the History Channel and I am happy to make a journal entry before I pass out from fatigue. 5 more pills to swallow, so off I go to complete this task. Goodnight.

A special note to Dr. Shadrad, who sent me a couple emails that I can not open. If I try to open my mailbox, the next thing I am told is that I can no read any of my emails. Perhaps I could trash alot of old email, but I can't even get into the mailbox to remove old emails. Geesh. A day wihout email, another day, and yet more...I will figure it out and solve it.

Day #5 off the iv infusion? I'm orthostatic upon standing, to a heart rate that exceeded 90 bpm. Too fast. I need to drink more water, and I plan on going to church to give thanks to God. I am realizing that i must be fully retrained to live in this body without banging it up (bruise checks).

So tonite I am thankful for my husband, and I do need my own recipe for life. Here's to a day of rest. A day of rest and not overdoing things. I'm going to have to learn from each day. Oh. And I must have been tired and/or had too much activity for the day...I will take it easier tomorrow and God will direct m to the right Path in my life. For now, I need more sleep.

Day #4 Off a Continuous Infusion

Well, I thought that today would be an interesting day. I asked the Lord to give me a day that would be like the days that I have left to live before me. So, these are the things I learned today:

1. I sought physical therapy for my shoulder, now week 15 out of rotator cuff arthroscopy (threw that football with my Dad perhaps a wee bit too much, growing up). My shoulder is not completely 'Frozen', but I am behind in the process of recuperation to gain full function of my shoulder, with time. And pain. I was stretched and pulled and tried pulling a pulley while bearing the utmost amount of pain that I possibly could. Never in my life have I 'walked in' to a rehabilitation program and a postoperative recovery as bitter as this one has been. But I knew what I was getting into. 

2. I need to exercise my shoulder every day, purposefully pulling my shoulder adhesions apart from the shoulder capsule. I get to decide when my exercises will be done, so that I can prepare myself for self-torture. I went through this surgery so that my arm would be better, not worse. One day, my favorite dream is to jump in the swimming pool. No iv, no battery, no pump.

3. It is imperative that I constantly drink water, as I wake up completely parched in the morning. Perhaps I have to keep drinking water all day long, as if my continuous infusion by iv was still 'going'.

4. I'll probably have to take a nap for the rest of my life, because in the afternoon, I hit a 'wall' and I have to go down for the count. I need to wake up on my own time, and not be interrupted. If someone or something wakes me up, I am groggy and listless for the rest of the day.

5. I can not do more than my body tells me to do.

6. Most of all, I give thanks to God for this miracle he has given me. I do not have to turn around every time I move and carry a ball and chain (i.e., my iv bag and my iv tubing). God will use this miracle for His glory, and as a witness to His power in my life. You, too can have God's power in your life.

Gotta go. Going downstairs to my husband so I can appear to be just like any other wife...mobile, thinking, and happy to see him. Except that now, everything is different. I can walk. 

I am Off the IV Bag, Day #3

This morning, I forced myself to get out of bed and make French Toast for breakfast. I took the magical Rx that my neurologist put me on since my last hospitalization, the Rx that I believe now courses through my bloodstream and supplies ample blood to my brain. This cerebral blood flow is what I have been missing. It is improved so that clinically, I still have no symptoms of nausea or vomiting, and no need to take ondansetron, the iv antiemetic that used to keep my head and my intestines from wretching.

On my first shift of caregivers, Annie May was my caregiver today, and made my day splendid. She picked out pink clothes for me to wear (oops, that was yesterday). Correction. I stayed in my blue and white striped pajamas today, because I was weary. Too weary to make it in for a doctor appointment with Dr. Amor, whom my caregivers and I adore. Now I remember that I called to tell the office I was too tired to come in for a morning appointment, and Miss Sherylm me promise to call her later in the day, to ensure I was not feeling worse. What did I do? I slept. 

I slept like I was sedated and in a coma, with nothingness surrounding my very being. As if a zombie, I puttered around my room and tried to make a dent in my pile of mail that was slowly mounting. When I woke up to our daughter's voice, I sought for love and affection from her. I am convinced that I will be able to do more and more physical things for her, and with her. 

My caregiver Miss Noel, had taken charge while I was asleep. Dinner, ideas, appointments. There is plenty that we able to do together, and I will miss her until her next shift. Miss Noel has a way of laughing with me, and together we can feel our hearts being melted together once again. She is my personal assistant and we have the same character and discipline rules that can be easily enforced. 

I made it downstairs for dinner, since I had been in bed, asleep and resting. Suddenly, the end of the day is over and I have to take my nighttime medications, as well as ensure that we have a Mother-daughter dinner before us. Now I must sleep. My eyelids are closing and I must sleep.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                 

I Am Off the IV Bag, Day #2

Yesterday morning, I woke up to CADD pump pumping away. As usual, pump by pump, hum drum by drip drop. Except that the fluid was dripping on my left shoulder, and it was cold and wet. I knew it was not blood, because it was not warm.

Slowly, it dawned on me that my iv was disconnected from my PICC line, and this had mistakenly occurred sometime overnight. I woke up as if I went from 0 to 100 mph.  It finally hit me. I was not connected to my iv bag, and had not been receiving iv fluid for much of the night. In my groggy stupor, I tried to punch the iv back into the pump. Seconds later, my medical knowledge and training naturally intervened. I knew the iv tubing was contaminated, and that it therefore was no longer deemed a sterile line. I threw the end of the tubing into the trash can, letting the pump drip and drip, drop by drop. I fell back to sleep.

It was when I later woke up, about 30 minutes later, that I shot into high gear. My mind was both fascinated and intellectually dissecting what I should do next. All I could think of was, "This line is my life. This line has been my life, has saved my life for over two years. This is my line, the one we keep sterile, the one that has been infected ?6 or 7 times. The last one the PICC line nurse told me that I would ever be able to place in my left arm, as there was a large stricture in the vessel that required fluoroscopy to 'pop' the line into place. 

Yes, the last PICC line change was too hard to place at my bedside. Since the line kept going up into my frontal veins in my head (ouchy, yucky feeling, to feel a stick inside your brain), therefore they took me down the hallway from the hospital room and downstairs by elevator, all to make it urgently to the Radiology OR Suite. Let me be perfectly clear about this. My 'sterile' field travelled with my body, and I stared at the automatic fire sprinklers and took note of mild cracks and imperfections in the ceiling as I was whisked away for a procedure I never thought I would undergo: fluoroscopic placement of a PICC line.

As I lay in bed, I reflected on my pump and iv bag situation. Of course. For right now, the iv is not connected to me, so obviously I have to increase my po (per os, or by mouth) fluid intake to make up for the loss of central fluid going through my heart catheter. My mouth was dry and gummy, and yes, I could not wait to get my hands on something to drink. I reached out and grabbed my carbonated water, balancing just enough to prevent me from falling out of bed. I already had enough issues going on, and falling out of bed was not going to be one of them. I was obsessed with my PICC line and preventing contamination. Somehow, I made it to my pharmacy cabinet and pulled out two 4 X 4 gauze dressings and a piece of paper tape. I wrapped my PICC line double lumen ends together in this sterile gauze, all with one hand. I fell back to sleep.

Just like clockwork, Angelina arrived in time to help me figure things out. We did orthostatic blood pressures (positive by systolic mmHg and by tachycardia, increased heart rate) and decided to take the day 'easy'.

But then I remembered that I was invited to a Garden Party, as it dawned on me that my quality of life could possibly be improved permanently, and this was my miracle. My lovely and protective husband let me go visit, laugh, and play table tennis with a dear old friend. It was his daughter's Birthday, St. Patrick's Day, and my No Bag day! I almost fell a couple of times, and I still used my cane for walking. Every step was extremely deliberate, as if I was walking on water. Common sense said to keep using the cane, as my imbalance could lead to a fall.

But did I ever have a fun time...a festive family time of peaceful laughter. A place where I knew that I could be myself. Me. Watching my child playing with older children, both of whom knew us throughout the years. Watching the interactions between my mother and the others around her. Bleak deference to the elderly people in the house, who deserved to be waited upon as if they would not be with us tomorrow. I shall never forget this day, for God set things in motion so that nobody could deny the coincidental happenings of my PICC line.

Recently discharged from my favorite hospital, Good Samaritan Hospital, I had been slowly going 'down' on my PICC line rate. There was a time that I was on 100 ml/hr. On arrival to the hospital, I was at 55 ml/hr. Once home, I had weaned myself to 27.8 ml/hr, a simple TKO (to keep open) minimal rate that would keep fluid going, but not clot the iv line in my chest. I had been keeping in touch with my cardiologist team daily, and they knew that I felt okay so far. 

Sure, I couldn't jump in a pool, go for a 3 mile run, or ride my mountain bike from Los Feliz Boulevard at Hillhurst Street, and go for a grueling mountain bike ride. The ride included an incredibly physical effort to get to the top, which displayed the Griffith Park Observatory. I could not swim laps because the PICC line itself was still going from my left arm to my right great vessel leading into my heart.

I made up my mind to go to this party, feeling that I desperately wanted to get out of my house for a social event of past-life friends. Confirming it with my husband, off we went to the other side of town. We stopped along the way at the Glendale Galleria and, for the first time in 2 years, we took my daughter shopping for clothes. 

Since I had been ill and had collected 3 years worth of clothing attire when my daughter was 2, this was a memorable event. Besides, her pants were above her ankles, as she had an unexpected growth spurt. Later, my daughter would tell her Nanny how much fun she had shopping for clothes with 'Mommy'. I had no idea that this would be an impressional 'event' for her, too. And now I didn't have to argue about what she was wearing to school (my ulterior motive), since these were Mother-Daughter articles of clothing that suited her taste, too.

This little one had been ripped away and ripped away from her mother, hospitalization after hospitalization, PICC line nurse after PICC line nurse in the Master Bedroom, changing my iv dressing once a week. "Are you going to die, Mommy?" echoed in my ears repetitively, as well as, "Am I going to see you after school?" The little one came home to an empty house for the last 25 hospitalizations in the last 3 years.  I scooped her up and smushed kisses over her angelic face. "Mommy is better. Let's go shopping and then, we're going to a party!" WOW. I never said anything like that for as long as our daughter could remember.

This morning, I called my lovely mother-in-law, and my closest friends and family. I let them know I was still okay-ish but I had to take it really easy. I got short of breathe easily, and I still, even today, had to drink 4 bottles of various kinds of water.

Where will my life go now? I was up last night until 12:30 am, and had been up and down overnight for several years. Today I took a 3 hour nap, and I wake up rejuvenated. My hands lift up to the sky in gratitude to God, and I let Him lead my way.

I had another 'Awakening', like the one I got after going to Chicago. I do not know why God picked me to go through crazy times all my life while I juggled medical training that became part of my being. What does my being a medical doctor have to do with all of this? I have learned that my brain is my protection and my integrator of knowledge, based on experience with other patients, especially those at LAC-USC Medical Center. Unusual presentations, rare disorders, and keeping educated with current medical knowledge. I feel like I am still learning, still discovering, still polishing my expertise in TBI, dysautonomia, vertebral artery dissection with aneurysm, s/p diabetes insipidus, and now with a new diagnosis of Basilar-type migraine which has been my most recent savior of my life. 

God is taking care of me and how did He show Himself to me, as The One who makes all things possible? Perhaps I just 'happened' to be weaning myself down on the PICC line iv rate, and my doctor agreed and was informed. Perhaps I just 'happened' to be on such a slow infusion that one could logically say, "Why don't you pull out the remaining PICC line?" The one that starts under my arm skin and ends up near my heart. The PICC line is doing virtually nothing perhaps, and is at risk of infection and death while it is in, especially if no iv fluid is going through it. 

So today, I brace myself for another bout of fighting to live. The PICC line either needs to be reconnected to an iv and I need it virtually for life, and/or we can think about pulling it out.

I never thought I would see a day without being attached to my ball and chain, the iv bag and the iv tubing, respectively. But you mark my words. If I have to be the first person to practically recover from the dysautonomia, you will hear my story in time. My story is your story. The only thing that differs between you and I is that the injury and the cure may be completely unrelated. This is reasonable, since all my syndromes are rare.

But you have your diagnoses, your injuries, your illnesses, and your way of dealing with your problems, just as I do. Except perhaps this: my medical school friends and I prayed with our patients and included Christ as the Great Physician.

Is it a miracle? Can I really live off and without a PICC line? We were running out of veins, anyway, and received no 'recipe' for living longer by poking in the PICC lines in a certain order that saves the best veins for last. Out of veins? Out of life.

That is what I thought before. It is how I felt and what I saw. All the answers pointed downward, as if I was on a spiral with no place to step off of it. So, I jumped. I jumped into 'fighting' mode to fight to live. I jumped into 'trusting' mode so that my life, my plans, my inclinations, and my actions were all to glorify God.

Talking to strangers on the elevator, especially the ones in a wheelchair. I was in a wheelchair, too. Perhaps if I was lucky, I could live for a couple years on the PICC line. One hospitalization, the Holy Spirit told me to 'Sit up, Stand up, and then Walk'. Who am I to argue with God? No one. God had greater faith in me than I did in myself, and He knew that someday, I would be off of the PICC line. 

He lets me know that He is in my life. It is actually quite funny, as I have found God's sense of humor. Just ask Him to show you signs, and you, too, will be given signs to encourage you in your Faith in Healing. Every day, there are medical miracles that are published. Why can't you and I be medical miracles, too, instead of accepting what the medical school books teach doctors? My body and my presentation to the doctor's office are usually unusual. A touch of my own forgetfulness, my own Altered Mental Status, and my vomiting patterns may be a harbinger of an upcoming PICC line infection, or some other new diagnosis.

Go on. Lay it on me. I submit my sufferings to Christ, as He suffered for us on the Cross. In the face of impending doom, I sing, "Holy, Holy, Holy" out of our bedroom window, and the birds, squirrels, and bunnies make their way into our front yard. The yellow and orange hummingbirds outside my window no longer fear from my presence. Perhaps they all just think that I am another animal that sings like a bird. Perhaps in perplexion, they navigate their way into my garden. God's way. God's way of giving me a gift that no one can purchase: my own forest of animals, like Snow White in a cottage with a pie in the oven. My own family for whom I have great love and mostly these days, the breatholding sound of our daughter singing acapelo to The Phantom of the Opera. 

Today, I went to a doctor appointment, Costco shopping, bouquet-making, and finally, a nap of unpreturbed stillness. Some may call it a semi-coma state, as my brain is firing away while I sleep. I can feel that my brain needs this nap time to regroup, and I praise God as I mentally visualize single-file red blood cells making their route single-file, to the tiniest, insyest, binsyest capillaries that perfuse my brain. When I reach this point, I am down for the count. I praise Jesus the Physician and Healer to work in my body as I sleep, to allow neuroplasticity and rerouting of the vital signs so that I can walk like every one else: without being on a battery. If I feel like fainting, I put my back on the wall and slide down to the ground in utter limpness. After my nap, it is as if another new day has begun and I can once again rejoice in the Lord, singing, "Holy, Holy, Holy".

Enough for tonight. I should be finishing my first book, so that you can be a part of my life and so that you can learn from the scientific and the spiritual worlds. To me, that iv bag never belonged to me. I would look at it and say, "I do not accept you in my life. You will be gone from my life forever."

Now, I look forward for tomorrow and the blessings that I can be to others. Today, a little old lady was buying groceries, and the Holy Spirit whispered in my ear, "Give her twenty dollars". I immediately obeyed, as I had seen the poor woman had overstocked her shopping cart and had to send back several items, for lack of money.

Her response? She put her hand on her heart, and said, "Who would do something like this?" We pushed away our carts to the Exit while she was still at the cash register and was presumably getting back those items she really needed. I turned back 4 times to smile and warmed my heart each time. With every turn, I could assess that she was still in shock. I raised my hands to the Lord, for telling me that she needed the money. I gave her my last twenty dollar bill and I can not convey to you how fantastically happy I was that moment. It was worth everything I ever did to land myself in that store, at that time, and be a help to her. 

I was reminded once again: we are here on earth for one another. 

 

Tuesday, March 17, 2009: St. Patrick's Day, Tyler's Birthday, No IV day.

I woke up this morning to the faint odor of staleness. In my half-stupor, I began feeling the sheets and pillowcases around me that were tinged with my iv fluid that was supposed to be going into my heart. On closer inspection, the iv tubing had accidentally been pulled off and 30 ml/hr was dripping all over the bed. I used to practice being blind when I was little, so that I would know how to do something in the dark. 

I am drifting off to sleep as I try to stay awake long enough to make my entry. The world does not have enough places of recognizable reward. So I talk to our wonderful Lord Jesus. There were many times that I spent, giving my sufferings over to Christ. 

1. God woke me up with the wetness of life, an astounding sense of humor upheld.

2.God woke me up this morning with a large sense of fateful people just spontaneously and erratically

3. God woke me up this morning with my iv disengaged from my PICC line. Praise to the Lord.

Miracles, Education and Inspiration

March 16, 2009

Today, I contemplate all those who have helped me. To my beloved father who awaits me in Heaven. To my Mother Renee who has always been there for me, and who continues to give me advice. Others who have believed in me: my son, husband, and little daughter. Professionally and personally, my years at Stanford University School of Medicine were by far the best professional years of my life. Here, I loved going to work every day as an anesthesiology doctor in training (residency). I was treated as a person with a brilliant brain (albeit up for question by some), in sharp contrast to over-rigors I suffered at LAC-USC Medical Center. Here, several Attendings believed in me while my peers seemed over concerned with my life.  

As I begin another route, another path to physical wholeness, I must pause and thank Dr. Nabil Rashad, Dr. Thanga, Dr. Steve Haddy, and Dr. Vladimir Zelman. You helped me take my assigned ICU cases into the ORs, making me cemented in caring for the critically ill. Thank you for all the ICU patients I had to take into the ORs...the old lady with a stroke, the young man who is now paraplegic from inflicted gunshot wounds. I had to analyze their iv lines, central lines, arterial lines, and take the patient off the ventilator. I had to squeeze the AmbuBag over and over again after trachestomy after tracheostomy after tracheostomy. Perhaps my peers were trying to make my life difficult; this I felt was true.

 A single parent through medical school, internship, residency, and Critical Care Fellowship, I eagerly sponged up my guts to make it through, one day at a time. Not many people know this of me, but I left a full scholarship spot in medical school, trading it for a better chance for my son to live better. What a compliment it is, to have our children give us new perspectives in life. 

My child was crying every night I was a single parent in medical school. My decision was easy. I wanted it all. A family, a profession, and success in spite of obstacles. Thank you to an elder medical student who took me by the hand, and off we drug ourselves to the Dean of the School of Medicine. She helped me acquire a letter of recommendation and official transcripts of my classes already taken. Sealed, stamped, and ready to carry. I left Oklahoma the next day.

Off from Tulsa, Oklahoma we got into my red 3-cylinder Chevy Sprint, together with a few clothes and many medical school books. I left an entire 2-bedroom apartment full of furniture and all my personal effects: antique photos, canopy bed, towels, everything. Thank you to the unforgettable Medical School wives, who helped box up my apartment up and put things in storage. Thank you to the best buddy truck driver who not only picked up my boxes, but also brought them to me in California. And sent me my first dozen roses, for my graduation from USC Medical School. I had always joked that I received more roses from my patients, than from men. As a single parent, I was too busy putting whatever leftover energy of the day that I had, back into my child. Sure, I failed at many things. Sure, I made mistakes that I am sorry for. And sure, I learned a lot. And helped the sick. I saw the door to Heaven, so this confirms that my past life must be okay with God, that He forgives me for my sins of comission or omission, such that I will be ready to go to Him when my Time is again at hand.

Thank you to the nurse midwife that talked me into going into Anesthesiology. God was watching out for me when I was accepted to the only programs I selected: USC Anesthesiology Residency, a transfer to Stanford University School of Medicine for completion of Anesthesiology first, and then acceptance into their prestigious position as one of the Critical Care Fellows. Had I known that Stanford Anesthesiology and Critical Care would be, in reflection, the best professional years of my life, one would think that I would have enjoyed it more, taken more chances, accepted more dances.

But I remembered that my father used to always tell me, "I just LOVE going to work every day! I can't believe that I actually get paid to do what I enjoy! I can't wait to get to work every morning!" Stanford Anesthesiology program, thank you for teaching me innumerable lessons. Believe me, I loved going to work every day, and the Hospital and its ICU were my home shelter of love and acceptance. I was so well trained that any Attending Physician had to go through me or another Critical Care Fellow to admit a patient to the ICU, and my Attending Anesthesiologists would always back me up, even if that really mad Attending decided to raise the bar a little harder and go tell my Attending his/her problem with me. Thank you, Drs. Rosenthal, Pearle, Mihm, and Feeley. To Jocelyn, Maria, and the nurse that got killed on the Life Flight helicopter in bad weather: you all helped me retain my sense of peer friendships and unconditional love. You kept me going on, from day to day.

Almost 3 years after the car accident, my iv PICC line is churning at 29 cc/hr. At the newest hospitalization 2 weeks ago (I think the total is now 25 hospitalizations since the car accident), for 5 days Dr. Cannom was able to save my PICC line as Neurologist Dr Verapamil (not his real name, but I believe the drug gave me back the lacking cerebral perfusion pressure to allow tiny, single-file, red blood cells to carry oxygen and nutrients to the master computer center of the body, the human midbrain) made a new diagnosis: that of Basilar-type migraine. It is only the beginning of this miracle of cerebral perfusion. 

Walk with me and see what I can do. If I can do things, you can also strive to do them. Do not take, "No" for an answer. Make things happen in your own life, as I have. Be the miracle. Feel your body shivering as you get up out of bed and trust in the Lord, knowing that you should have died 5 times in the last 3 years.

Whereas before, I could not get out of bed without taking iv ondansetron, now I can get up slowly and carefully balance on my cane.  I can walk! Whereas before, I would have to wait an hour for the iv ondansetron to take effect, now I can brush my teeth when I first wake up in the morning. From being bedridden to being in a wheelchair, to walking with a cane, the Lord has indeed given me the miracle of a walking life.

I can not end this entry without thanking my husband for sticking with me. The words I have to say to him? They are too personal to list here, and he already knows the joy I have in being a family together. I also thank all of my caregivers for their love and patience with me. Even though food disappears out of the refrigerator, toilet paper is missing in bulks of 10 at a time, and a set-aside-to-do-the-dishes ring disappears. It is hard to find a consciencious, caring, actively working caregiver to feed the sick, change the sheets, and help me walk from place to place. 

I probably have not been the best patient in the world, but understand that I fought for myself whenever I thought it was necessary, and I used every bit of my medical training to keep myself alive. With God's Blessings, I go now to take my usual 3-4 or 5 hour nap of the day. I envision my brain as it heals itself unto this deep sleep.

If God permits, I will awaken to the sound of the birds outside my window seat, and my eyes will open to watch the baby hummingbirds flitter outside the leaded glass window. For now, that is all that I ask. Once I wake up, I will give thanks to God for another morning, for another evening. I give thanks simultaneously as my orbital muscles contract so that my eyelids go from a closed, to an opened status. I will ask Him for my assignment for the day, and I will carry out my day for Him, with Him, and in Our Lord Jesus Christ.

Whatever lies before me now, you will be able to live through with me as I attempt to share my blessings and my Faith in God. As I am now tired, I will start tomorrow to carry you with me as I walk in my shoes of thunder. Never a dull moment. 

You will start out tomorrow by carrying my 5 lb CADD pump for me. I'll tell you the rules of the game in the morning. In the meantime, may I leave you with this parting thought: there are many of you that are not able to keep up with a medical diagnosis, or a special or rare abnormality that the doctors have never seen nor read about, perhaps because it is rare. You can still question the doctor's plan regarding your body, you can make your own deviations with your doctor's consent so that your health care is tailor-made, and you do have some control over your life, your shoes, your clothing, and your money. In the meantime, I'm putting in another bag of iv fluid, and another 9 Volt battery. I will listen to the hum, drum and drip, drop 30 times a minute, as D5NS courses from my left antecubital area into my right superior vena cava. I will listen to it all day and all night, 24/7.

My advice for the day (check with your doctor first): Be the Best Person You Can Be. 

Just one day at a time. Take a long shower. Start afresh and walk through life with me. Say one prayer for me. Say one for someone else you know. Prayer really does work. This is not a cliche. I should have been dead by now. The least you can do is to pray for your children, every day. God will protect them and save them from harm.

God wants to use my life for your inspiration, for your nightly peace, and for your future inspiration.