Wednesday, May 18, 2009

Too tired to mention much. My faith in humanity was restored once again today. The 'movement' has begun. Please pray with me and help me to gain physical strength. My head hurts like a pin is stuck in it. My retroorbital area (i.e., behind the eyes) bounded and bounded until I thought I was going to scream. Then there was  not enough blood going to my brain, and I had an increase in the severity of my 'head rush'. It required that I leaned over with my head to my knees, in order to get blood to my brain. Nausea quickly ensued, and I could not brush my teeth. Gag reflex increased,  so that suddenly my stomach would wretch and wretch whilst spasms of gut pain ensued. 

I sang, "Holy, Holy, Holy" as loud as I could, and I vowed once again, not to let my disease take over my life. I sat in silence. Listening for God's  voice. He confirmed His presence in our lives again today, and we are growing stronger in the Faith that God is in Charge.

My big epiphany: 1. Praise the Lord through all of your troubles, and take control of your body and mind. Give everything to God. 2. Dedicate your suffering unto Christ our Lord, who suffered for us all, and who we can only touch a smidge of suffering together with Him.

Once I offered my sufferings to the Sufferings of Christ, and Praised God in this light, my Faith burst like a flower seed. Whatever else, I learned the last two major steps to adversity and overcoming: dedication of my sufferings, and Highest Personal Praises to God.

Sunday, May 23, 2009

Today is a day to remember. 

I woke up late, then sat at our Master bedroom leaded glass window seat. The birds were singing, the air flowed through the windows and it was pleasant to feel a whisp of wind without having to actually be outside. My sun poisoning from the previous days was still wiping me out a little, and my chest rash became larger and then smaller. But all of that does not matter. I made it out to the local State Park and walked a little. The special part of it is that I walked with the little one and her first grade class. I went on my first Field Trip, thanks be to the Lord Jesus Christ. It was so worth it, to see the gleaming eyes of my daughter and have a few of her friends look at me gracefully. Like they were happy to see me. Especially off of my PICC line. I still drink liter after liter of non-free water, as if the iv was still in and my body depends on the hypervolemia to perfuse my head and allow my pituitary gland to be allowed blood and oxygen.

This morning, I blasted, "Holy, Holy, Holy" and "How Great Thou Art" out the Master windows. I lifted my eyes and my hands to the Lord, in pure praise of being alive and serving Him yet another day. What an honor, to live another day. To try to tell you quickly (in case there is no tomorrow) and concisely how the Glory of God has filled my soul.

I so do want to give back to you. Something that may help someone else another day. Here, I will describe the basilar-type migraine they have given me as a diagnosis. First, the retroorbital area (behind the eye) feels sharp twangs of pain. Hyperacousis worsens, leaving me paralyzed for a few seconds before I can comprehend what is going on next. Pounding in my right temple, along the termporal artery....if I lay my fingers gently on my skin, I can palpate every cm of artery and each bounding echo as my heart beats. If I can just relax my facial and neck muscles. If I can just sit up without getting a massive headrush. If I can just stand up and walk away from my chair. Instead, I bend over to keep blood to my head. It looks like I could touch my toes at the same time.

But how Great God is. In everything, I give him Praise. I am covered by the blood of Jesus and pour his blood of protection over my body. Like water out of a bucket. This morning, during my praise time, I had tears streaming down my eyes for the lives of my children. For my wonderful husband. For Sofia, the Nanny-turned Home Manager who is the second mother of my girl. For my wonderful son, whose pain I give up daily as an offering to God, and the hopes that he lives out some of his dreams.

I have to close my eyes to type. The eyeballs are simply getting too dry, and I do not want to dry out my eyeballs. So I close my etes and type at a snail's pace. I could not leave this day without telling you that again, I gave myself up to God as His Vessel, His Servant, His Follower and His Believer. I dedicated my sufferings to Jesus, our Lord. 

I told God that I did not want anything from Him. That I threw myself at His Mercy and continue to live in it. I thought I had already done this when I was Saved. But I find myself dying to myself daily, surrendering myself to the Lord daily.

"In every situation, I Praise God for His love. The spoken words have creative building powers, much as God said, "Let there be light". My strength is in Jesus. My hope is in Jesus. My trust is in Jesus, and I will work to heighten us youngsters on growing up and becoming Elderly. It is a different world when you no longer drive, when you spend most of your gas money on doctor visits, physical therapy, and/or picking up pharmacy prescriptions. Thank you God for another day. Thank you also for tomorrow, that intangible miracle that happens every day.

Wednesday evening, May 11, 2009

I finally fell into a deep sleep this afternoon, thanks to someone else.  Perhaps 4 or 5 issues were before me, and I was not certain as to the solutions to the various problems. It had memories of a previous hospitalization that did bring me rage that I did not know I still had. Rage that this doctor did not believe in me, did not think I was serious about my symptoms. I confronted it, followed the rage to its origin, and was led to let go of the potential and natural self-destruction that could come if I internalized the rage. I was made to see this with great clarity, and it was an epiphany of grand proportions to me. Just gotta let things go. Can't change the world, can't change a mean person. Just pray for those who seemingly oppose you, that is what Jesus Christ taught. When was the last time I prayed for someone that I disliked and/or had no love for? It is a personal question, one to ask yourself and not one for me to tell you my answer.

I usually have more trouble sleeping at night than is usual. Sometimes gets to me, especially if I did not have a good night of sleep and I am trying to take a nap. Taking a nap can then become a problem, and I have found that this un-sleep pattern comes and goes in spurts of three or four days at a time. Too tired to take a nap, too tired to wake up when I am supposed to....although one could say that theoretically I do not need to wake up in the morning to care for our daughter and I could just sleep in every day. There were many days like this before pre-school, days where I was a stay at home mom with no one's schedule to follow but my own. Then came real life, and real life does not care if you are disabled.

There are not enough parking spots, enough short lengths between the car and the arrival zone. I believe that when we visited Orlando in the past, it was noted by me for a special reason. It seemed to be 'disability friendly'. Wheelchairs fit everywhere. Ladies with their baby strollers do, too. Does anyone think about going all around the place and showing establishments how they can improve things for the disabled? There must be a certain amount of disabled who suffer or die from being too far away from everything, with fatigue being the usual measurement. Bedridden is on one end, and you spend very much time there. I thought I would be dealing with these issues in my 70's, not my 40's. 

The pool was warm as a bath, so I walked into it with my pajamas on. We had a PICC line Removal Pool Party, BBQ, and I think I did  4 laps with much effort. When I could feel heart palpitations, my face apparently turned white. My caregiver promptly pulled me out of the water and I willingly followed her advice. My head was not getting enough blood. Blood to the brain is a very good thing.

Off to sleep. Thank the Lord God for another day, another day. May He be praised in all that you do. I went to the same place earlier, at naptime, as I was last night in my dreams. Maybe my dreams will be different, though. I am lucky to be here, to breathe and to sleep without an iv tubing machine and its hum drum, drip, drop every few seconds. I'll take my bottle of water solution (i.e. not free water, or I would have to worry about hyponatremia, low blood sodium) and keep drinking bottle after bottle after bottle after bottle. I can not complain. God is taking me somewhere, but I do not know when. He is taking you somewhere, too, and you have to take notice of what God is doing in your life. Give Him the credit in your praises, and notice that God already is talking to you. It is whether you listen and then act, that God cares about. He desires that you come to know Him as your heavenly Father. One who loves and cares. One who suffers with our sufferings. Let us see what God brings us tomorrow: He is constantly making Himself known to us. Please pray that my re-growth of neurons, or the opening of single capillaries continues such that God continues to lead me to you, to have you listen to me and act on your faith. Goodnight.

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.