Just finished throwing up. First saliva, then acidic contents that were yellow. Green would be a color resembling or being actual bile. But no bile, thank God. My throat is still sore as I write this, but . . . This could be the last entry of my life. It could be the last time you read anything. This is true 100% of the time for 100% of every being on Earth to instantly die. Swine flu, fires all about, earthquakes and the shutterings of the Earth abound. 

I am so sad to be missing an appointment with my psychiatrist. I think lots of people see psychiatrists but, as is the patient's right, they keep this information private. To everyone. Here, I could die with each second I am not drinking water. I live in this different, World it seems. One that is faithful in God, trusting in the road ahead (ok, not all the way 'trusting'), and having God show me His presence in my life. As He can do for you. The secret I learned just before my PICC line was pulled? Someone mentioned it to me yesterday, as she stopped to greet me. Once I reached the place where I dedicated all of my sufferings to the drop of the bucket that Christ suffered for me. Pain? OK. I give it to God, for the sufferings of His Son. Those sufferings pale in contrast to what Christ suffered for us. But I believe that for God, He accepts these sufferings as sacrifices for our sins, perhaps. Or perhaps we finally hit the point in our lives that we accept what we have, we accept the way that the world is, and we are puppets for God. Sometimes, I fast to feel closer to God. Jesus fasted, but I do not hear that fasting is spoken at the pulpit much.  Which churches still do this? The Blessed-by-God Jewish peoples are still blessed by God and include fasting, as do some Muslim religions. What about Christianity? 

=[]\    This is just to show you how a brain-injured person thinks. The order of things, the order of thoughts. Thoughts are categorized, and subthoughts are kept in waiting while the main subject is being told. I know that I am not telling the medical community, nor the general public, anything new. This has already been described by pioneers of great repute. However, I am a doctor and a writer.

And a patient and a physical body with anatomical and physiological disorders that are unusual, rare, and all in the same person. Dysautonomia, traumatic brain injury, Mal de Debarquement Syndrome, neurogenic bladder, status post (s/p) vertebral artery dissection with aneurysm, etc etc. I don't know....24 pills/day? My fingers shake and my left hand has its own tremor. 

I derailed again. Got off subject and now I can not recall what my next thought was going to be about. I know that I had a thought at the back of my head, sitting there ready for me. I think that the problem is that I can not even skim the surface of the area, whereas before, things were different. Before, I could 'hold' a key word like 'box' and keep another word like 'car' in my memory. Now, I am constantly asking my caregivers about my own words, my own conversations. "What did I just say?" "What were we talking about?" Everyone does this sometimes, right? What if you were walking down a hallway and you forgot where you were going? Does that ever happen to you? What if your day was constantly filled with forgetfulness? Like the nutty professor?  Forget who you are calling as the phone rings; forget why you are walking down this hallway; forget where you are going. Constantly. Your caregivers can steal food, toilet paper, paper towels, whole new containers of beef or chicken. Now a pair of my jeans is missing. There is always Something Missing in this house. Do not put anything down, because there is a thief amongst us. Keep your purse locked in your car. In some lives, people have to live this way. 

If these people can do this to me because I'm an invalid today and just finished throwing up, how much more can they do to an Elderly person in a nursing home? Stealing, hitting, neglecting, starving, leaving in briefs with stool for hour upon hour...I hate it. The souls of these Elderly, these people who are precious as a child. Their souls cry out to me. They are right down the street and a few turns away. It is like a haunted house, constantly nagging at me. Hence my passion for stopping Elder Abuse. Do you realize that if you are lucky, you will become very old and very hard to take care of? Who is going to take care of you? If you have the means, I have seen (but I'm not telling you what to do) that long-term care insurance is a necessary part of every financial portfolio. We have to plan to deteriorate, plan to die. Decide who we want to be with, and what is important to us. Life. Human life.

So I go back and know and live through what I went through as I went through it. Because, as a patient, I went through years of animosity with the insurance companies, and with the medical profession. I'm not the only one. Doctors decide to retire early from practicing medicine, especially the elder doctors. They have seen the 'old' days and can compare them to now. It's just not like 'the old days' now, where physicians gain job satisfaction because of grateful patients. Doctors used to play golf, no? Does your doctor play golf twice a week? Or is he/she tied to a desk with 197 emails and 12 piles of papers on the desk? Don't you think it would be better if the doctors were happy to be doctors? That you could talk to them, and they will believe you. That they will try to find out what is wrong with you. And if he/she doesn't know your problem, your diagnosis, can he/she ask for help? No doctor knows everything, but there are plenty of doctors that know a little bit about everything. Up to a point. Then a doctor will eventually consider her/himself uneducated in the specialty that you might need to be evaluated by. It feels like I had to exhaust myself by planning to exhaust the resources and capabilities of one physician. Don't know what is wrong? Send me to the right Specialty, if needed. A cardiologist, or a neurologist, or an oncologist.

The way things are now. So different, so much less satisfying to physicians who are in it for the life. The art and the science of medicine. The joy of taking someone in ear pain, and later, her relief as the cochroach was out of her right ear. What if I did the wrong thing and not only was the Emergency Room patient pregnant, but... but what if it was a pregnant bug in her ear? If I broke the bug as I was pulling it out, I did not want to unload a bag of cochroach newborns into her ear canal. The ear canal is close to the brain, and common sense tells me that it would be a yucky thing to let that happen. 

So I devised a plan. First, we filled her ear canal with oil. This is both to suffocate the bug, scare it into backing out the ear canal, and to keep the bug intact. Without breaking it. Oil in. Fail. Bug only wiggles more. So I take a pair of tweezer-like forceps and hold my breath. I've never even heard of this happening to someone, but here I was with the pregnant patient, the bug, and the oil. I did not think it would  be a good idea to keep this game of cat and mouse for much time. So, ever so gently and precisely, I was able to hold my breath while pulling out a wiggling bug with long legs. To me, the legs seemed bony and helpless. And did I forget to say that it was a  very h u m on g o u s l y gross task for me. But I am a professional. I will not let you see my face change, and my lips will not twitch because I know that God is with me. He guides me and leads me, even to the point of leading my surgical hands to grab the bug in just the right position. You might have been fine with it, but boy did I hate and love my job at that moment in time. 

When I thought my care was bad, I believed in myself. I was too young to die. I have a little daughter smoochy woochy. I hated the idea that I would die on one of my hositalizations. I fought for myself by speaking up and by continuing the search for my Path to recovery. There is nothing like a true diagnosis, a true therapy, a true 'fix' or cure. On the other hand, it is not outlandish to consider that some doctors may spend more time on the computer or filling out paperwork, than they did with the patient. Is the tail wagging the dog? Hello America and beyond. You only have once to die. Why not Personal custom requirements by even one patient may disrupt the management and stability of the entire office. So much patient entitlement when 

Yesterday, I saw two doctors that have known me since the car accident. I incidentally passed the Dr. Frankensteen. Dr. Frankensteen brought up so much astonishment in me at first, that I was simply whole-bound stunned. Jaw drop to the ground. No, keep a straight face while the acid in my stomach turned. He was close enough to touch me, or I could have...reached out to touch him. He walked until he was out of sight and then my atonishment turned to rage. This was the man who seemingly gave up one me and he actually wanted me to be discharged from the hospital inpatient status and then be admitted to a nursing home. A psychiatrist is a good person to talk to about these things. A good psychiatrist, I believe, helps one solve ones problems. I'm lucky I have more than a good psychiatrist. God blessed me with him.

I'm too tired. This is taking too long. I'm going to make a phone call and then go to sleep. I need a three hour nap.

I sign in today in grateful thanks to God that my PICC line is still out. A neighborhood prayer group apparently started praying for me some time ago. Now I of course have the compulsion to show them God's Ways, so that they can see that it is true. Before, I was sick. Now I am well. Not well enough to do certain things, but at this point, it does not matter. All that matters is your family and your beloved generations of Elderly who have toiled to make me what I am.

Maybe I did not like things growing up, but I feel like the great lion who just got the little splinter out of hiim. I can not remember any of the entries I have made before now, and I never go back and read them again. I have no idea what I have said before today, and my mind processes this information differently than it used to. Before the car accident.

The phone rings. I have a shoe emergency that truly is a real catastrophe. Poor lady can not walk after her surgery, and her favorite and only slippers are at a house nearby. Lulu is bringing me a donut for breakfast so we can meet Dr. Dashing for book editing today. I have to take my pills. No, I have to wait until I eat before I take the pills. So now, I call the neighbor and friend, pick up shoes, take them to lady, jet down to book editing, squeeze lunch in there, then head back home to help the guinea pig with her homework. Term of endearment; inside joke.

I feel like throwing up. When I sit, my blood leaves my head. I can feel it draining down my face, as if it were a warm bottle of wine dripping downwards. If I just lay down flat, everything is fine. It's just that little balance thing, when I get up. Balance. Think of what you life would be like without it. I stand up and automatically bend down at the hips a bit. Like the little old men and little old women. I just do it to get blood to my head. If I stand up, I am like a wine cork that has no wine touching this cork, because all y blood goes down to my legs. If I walk around in this bent-over shape, some blood goes to my head. If I stand up, I may faint because of the 'dry cork' phenomenon. It is as iif my venous alpha one receptors cannot work. My veins all pop out and there is no natural 'squeeze' that is supposed to occur, so that blood will still go to my head. I wear the same stockings as paraplegics. they are so tight that we struggle to put them on. But once on, they squeeze the blood up my legs. This way, the blood is redistributed upward. Toward my abdomen and ultimately, my brain. It must be my midbrain, the pons. All it takes is one capillary, with a line of red blood cells carrying both oxygen and hemoglobin. One capillary is all I need. Without it, I am on my back.

I wake up and it is my best time. I could blow-dry my daughter's hair and go iin the car to take her to school. I sat in the disabled parking spot and met Glow. She just glows. I am going to go to their prayer meeting this Friday, after school pick-up. Now, I take my medicines without throwing up. Goodbye for now. God is good. All that I'll ever be, I offer now to Thee.

Sunday April 25, 2009

Our book is almost done, letters of attestation pending. I did it. It feels like I climbed a large mountain and I'm standing at the top, all bent over and breathless, hands on my knees. Tachypneic (short of breath), breathless, and scared about how long I should be up here, and when I should start going back down to the lower resting area down below. But no. I have to stay here, because I made it this far. I have to revel in the taste of bodily success, take that pushy mind that I can now lay to rest. Sit and bask in the newness of my condition, using great caution at every turn in the road ahead.

My PICC line has been out for about 10 days, and I have been off the continuous infusion of sugar and salt water for about 40 days, I think. I'm too tired to write it down to maintain track of the days. All I know is that it is another day that the Lord has made, and I will be glad and rejoice in it.

I tried on clothes for traveling to Phoenix, AZ. I hope to meet with my cousin's family, attend parts of an anesthesiology pain medicine meeting, where my husband will be finishing his last stent as President of a national organization. I will see some people that I have not seen in years, and I will see people who I have seen before at these meetings. It will be a reunion of sorts, and I will revel in whatever I can do. I can sit for the car drive, but my neurogenic bladder has an 'all' or 'nothing' phenomenon, and I don't want to be caught losing it 'all'. So I will do what hundreds and thousands of 80 year olds do, and I will wear briefs in the car. Embarrassingly, I have had urine drip from my bladder while in an elevator, while in a plane, and in the car. Full bladder loss of control. Egads.

That is the thought for the day. I'm happy to be lying in bed making sure I do not get too tired. Yesterday, I slept through most of the day, because I had a migraine headache and my head felt like it was size of a huge balloon. Off to nap, I just have no more energy for today.

About 6 days off PICC

It is like being human again, not having to confront dead batteries that stop the CADD pump from pouring sugar water into my heart area. Make sure the refrigerator is stocked with supplies. Blood clot? Activase to fix. Catheter pulled out accidentally. Catheter stuck on a chair, pulling me back like the boing of backfire. Stand up and find my bag and my tubing. Not there? Check the other side....but I turn around now, and there is n o   b   a   g  . It is only an empty spot behind me know, and I inwardly smile at being able to live without being tied to an iv.

I see struggles, strangulations, gossip, and ill-feelings that were directed toward me, and there are a handful of people who would probably like to have heard that I died from the car accident years ago. Seriously. I can not help what I think about, but I can write down my thoughts.

I used to think I had a dark cloud above me, like adversity and immoral activities followed me wherever I went. As if I was constantly being tested, constantly failing, and constantly asking for forgiveness. But now I know that God is using me to give hope to others. People with arthritis, with hypertension, cholesterol or a cancer such as breast or prostate. Girls that get pregnant and decide not to abort the baby. Adoption and love for little children who can be a blessing from God. 

First I was left to be Mother to my siblings. While still in my early teens, I made 35 sandwiches a weekend so that everyone would have a lunch sandwich ready to eat when it thawed out at school. When I was 16, stupidly I ran away virtually every weekend. Got married at 18, had a baby by 19, and tried to be pre-med in college. Tried to cry through my tears, tired so that I would go to the library to study and instead, I slept there. Had a miscarriage wherein I lost a lot of blood and my ex-husband had disavowed to care for or support the baby, anyway. Divorced in medical school, devastated and lost after being abandoned in medical school, assaulted by a patient in Internship, and just did the best that I could. Good thing that my Dad taught me how to see the roses. And many thanks to the people who helped me along the way. You know who you are. 

Very very much fatigue over the last few days. Did I do too much? Did I do too little? God is in charge of my life and with the Holy Spirit as my guide, I have recovered from a cluster of rare syndromes such that I am no longer bed  bound and on an iv 24/7. We do orthostatics now, to tabulate the autonomic nervous system and whether there has been any neuroplasticity. I still feel extreme thirst and dry mouth, and am deciding on balancing efforts for one good: to figure out my fluid retention/production balance is daily. I think that is all this boils down to. Keep drinking X amount of fluid; urinate XXX amount of urine, and I'm up all night drinking the rest of the water. Now is time to sleep. May God bless you and lead you to do something with us. Tomorrow, I will tell you more. Goodnight.

Gotta sleep. Praise to the Lord, the Almighty, the King of Creation.

April 6, 2009 Day Off the PICC Line

Monday, April 6, 2009

Today is the happiest day in my life, after my child births and wedding day. My left peripherally-inserted central catheter (PICC) line was pulled out by two nurses less than an hour ago.  I am in the biggest shock of my life. 

I can move my left arm and there is no pinching on my skin, no puckering of the Tagaderm, and a simple gauze dressing over a hole in my arm. I can sit up without pulling a pump and iv tubing from behind me.....I can put on a shirt without figuring out which way the iv bag and tubing are pointing. I can move to the right and to the left and not worry about whether or not my iv line is going to get stuck on the doorknob and make me fall flat on my face.

I can move! I am free! All the work, the upkeep, and the panic levels are now decreased significantly. I can live a normal life without an iv, even though I still suffer from orthostatic hypotension and the dysautonomia. And a list of other complaints that are now in the back of my mind. I can move...and I don't have to worry about PICC line infections, accidental PICC line removal, and....I can move. 

My biceps and my calves feel like sponges, so my heart must need some conditioning. I have to figure out the things that are going to hurt me, the close calls to stay away from, and how to plug through life in a wholly new manner. I tell myself to forget about all of that for now, and revel in being free! Moving my arms up and down without feeling a twang of iv pulling my arm back. Everyone says I am a medical miracle. I am humbled and grateful, especially for all your prayers. If it had not been for all the prayers that were said on my behalf, I am certain that I would not have been touched by the feathery touch of a healing angel. 

I want to plant new plants, but I get short of breath from performing even the smallest tasks. I break out into sweats that are independent of my estrogen/progesterone levels, and I keep drinking mineral water. The iv, the bag of D5NS, the CADD pump, the batteries, and keeping one cold bag out for thawing before it enters my heart area directly. All of these are no more. I am so blessed by God to receive this miracle at this time. Perhaps God is leaving me with unfinished work, for giving my Testimony, and for blessing the name of Jesus. God Bless You while I sleep. I am sure that when I wake up, I will not remember that I am in a hospital bed. It will take a couple minutes of realization, then my place of residence and my absent PICC line will suddenly strike the memories in my brain. I will be in a confused daze of realizations, and I give God all the glory.

   

Day #17 off iv Infusion

I think my dysautonomia is 'coming out' as each day passes. It has resurfaced. When I stand up, my heart rate goes to 100 beats per minute, and I feel chest palpitations, light-headedness, and fatigue. This is perhaps the most fatigue that I have felt in years. Just t-i-r-e-d...and sleepy, and a little voice speaks inside my head. "You're getting sick again", or "You have to sit down". I do not believe that there are voices coming out of my teeth, nor am I having visions or hallucinations.

I have to listen to my body, otherwise it will become weak and frail. Having been bed-ridden for ?3 years, my body will bring me down to the ground one way or another. So far, no fainting for me. Although I've been close and seen the world spin around me. If I just squat (reminds me of 'blue baby syndrome' or Tetrology of Fallot), increased cerebral perfusion is 'felt' by me.

What does it feel like to be on the verge of passing out with changes in my body's position? Like I'd better know what is going on with my body, and that it gives me pre-warnings, warnings, and then warnings that I listen to. "Sit down" I say to myself. Buying planting flowers from my favorite nursery has given me incentive to garden again. 

Alas, my brain is ahead of my body and my body is severely limited. I am constantly "on guard" for a feeling of blood draining out of my face. People say my face is the door to my body. As my eyes get black underneath, invariably I am so, so, so tired and apparently my face looks pale, with blackness under my eyes and a desperate need to sit down or lay down now. Before I find myself with scintillating scotomata as I pick my head up off the floor. We do not like this feeling, and we do our best to avoid it entirely. 

It is kind of eerie that if I feel fine, my face turns pink. It's just like being see-through or having a constant thermometer on my forehead. You know how I feel by the pallor of my face.

Since I take a nap every day, and have done so my doctors started asking me questions today. Some of my doctors think it is a good idea to perhaps 'wake me up' with a pill in the afternoon. Cardiac side effects are similar to drinking too much caffeine, and it really bothers me to go on another pill. What should I do? The proper thing to do is to listen to my cardiologist, since he has been a literal life-saver for me. I'll see him in a handful of days. I am hoping that he will decide that my PICC line can come out. I have to wait until Monday, so that my cardiologist's opinion will determine my outcome. He knows that I am a fighter, so perhaps God will bestow another blessing and allow my condition to accelerate its repair.

My son is more like my son now, when it seems ironic to all of a sudden miss being with him. I look at his sister every day, and I remember being so broke in medical school that I drove an ice cream truck, and I cleaned toilets for a law office. We have been through our own special struggles and our own unique pains, and I am grateful that he has a good, good heart.

Go out and dance, if you can. Travel. Run with the smell of the morning's fresh dew on the grass. If you are healthy, use your body. Think of me and how I can not stay out of bed for one whole regular day of my life. My energy is sapped, and now I will sleep what seems to be an unending void of sleeplessness.

I thank the Lord for all His goodness. If this is the best physical condition I can attain, then I will be happy for small trips, for remembering my music of the 70's, and I will even get my beauty rest daily. I can live like this, if this is the 'best' that the doctors can do. I am so grateful to be alive, to have lived on the pump and iv catheter for years. And, hopefully, to get this PICC line taken out of my arm and my chest. First thing I'm going to do? Jump in our pool, and start using the lap lane we created for the pool.

BTW, my sun poisoning condition is much better. My lips and surrounding skin folds are no longer turning tingly and red, peeling after two days. My lips feel like normal, except when I get thirsty and my mouth is dry. Glory to God in the highest, who has bestowed a medical miracle upon me, and who has allowed my children to get to know me. 

I wish you all of God's speed in turning to Him for a relationship of love and acceptance. Do I care what any of you think about how my writing is? I am too old for that, and too wise besides. My role is to have fun telling you about our daily lives here, so you can appreciate your ability to drive, to take the bus, or to go for a walk. Of course I miss walks in the mountains, silly. Anybody would. But I take that energy, close my eyes, and play it safe. I would not want to be guilty of sitting in the garage with mound after mounds of popcorn on my shirt. I need to give people help, and if I am boxed in a corner, I will strive for one thing: survival.

Highest Personal Regards,

Margaret A. Ferrante, M.D.

Board Certified Anesthesiology

Board Certified, Subspecialty Critical Care

Board Certified, Forensic Medicine

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.