title>*sapphoq healing tbi
*sapphoq healing tbi

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Monday, December 28, 2009
  Absence and Sorrow

I've been somewhat absent from my blogs (and from as much of life as I can cancel) for several reasons. My dad has dementia and that has involved my own grief as well as his acute sense that his "mind is failing." Dad who is still driving a car (no thanks to the State of New Jersey for giving him back his license even after I informed them of his deteriorating condition) has been up to see us several times over the past few months.

Additionally the iron-deficient anemia (which I thought I had only had since August but the blood doc tells me I've had for three years) remained unmedicated for a month thanks to the shenanigans of the mail-order pharmacy in cahoots with my medical insurance plan. I could not tolerate over the counter iron. The medical insurance plan required a pre-authorization for the iron script. The mail-order company sent me back the script 28 days after they had received it. Insurance company refused to pay. Pre-auth was turned down I guess but I had not been informed directly by the insurance company. Price of prescription that was turned down: 39.99 for a thirty day supply. I need the iron pills and specifically I need the prescription iron due to things like a severe hiatal hernia and an irritated colon. So I shelled out the two twenties and practiced being glad that I had the money.

Meanwhile though, I suffered through several months of extreme heat sickness and tiredness. The t.b.i. gave me cognitive fatigue and some physical fatigue as well. The C-PAP machine stopped the feeling that I was sleep-walking through life, even though t.b.i. fatigue remains. The anemia finished me off for awhile. I am actually looking forward to visiting the gut doc in January. I feel so un-well that I am looking forward to the kind of testing that comes with visiting the gut doc.

Sometimes I think medical insurance companies run the numbers like a bettor would run the horse races. As long as the horse is winning (doesn't access the medical insurance benefits much) everything is gravy. When the horse begins stumbling a bit (needs medical attention for chronic conditions) the bettor begins to doubt his choices. When the stumbling horse falls down deal-- there is no longer any problem. Business is business. I understand that. But I also understand that human beings are not race horses and that somehow our lives should matter. My insurance company insisting that I should be able to tolerate taking over-the-counter iron for an anemia which I've had for three years flies in the face of a certain reality. So the company gets to save on my iron medicine by refusing to pay for it. A certain amount of denial on their part saves them money. But that same denial forces me, an adult on disability through no fault of my own, to spend extra money on a medical necessity. Thanks pal.

There is some inherent wrongness with insisting that a patient be able to take iron over the counter in spite of conditions that are counter-indicative to that. There is some inherent wrongness with the A.A.R.P. lobbying against any state motor vehicle agency requiring adults of a certain age to submit to driving retesting. And along with that consequently, many insurance companies failing to pay for driver evaluations conducted by a professional upon order of a physician. My dad's insurance-- a combination of Medicare and A.A.R.P. supplemental Medicare-- naturally refused to pay a dime toward his eval (one that he utterly failed I will add). That bill amounted to around 400 bucks.

So to say that I am a bit testy, irritable, and sluggish is accurate but doesn't really cover the whole truth. I've had all I can do to continue to be a participant in life rather than an observer on the sidelines. I am filled with grief. Dad knows he has dementia and he is aware that his brain is on strike. He continues to steadfastly refuse medications for all of his medical conditions as well as the brain scans that would make a definitive diagnosis possible. We do not even have a name for the monster that is beating on his brain. I love my dad and when he dies, I will miss him for the rest of my life. I hope he dies in his sleep peacefully before the real misery sets in. I feel like there should be more or better things to hope for but I haven't found those things yet.


sapphoq healing t.b.i.

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Monday, September 14, 2009
  Growing Back
shout outs to Dr. Holub, Peter Kahrman and his Life Growth workshops, and Vitolo Rossini

Once again, last night I found myself explaining in layperson's term basic brain factoids to a friend. She proposed the tired misinformation that "the wires of the brain grow back-- and better than ever." I explained that if there is axon shearing, the axons cannot regenerate. When the axons are not sheared, the dendrites can re-connect but there are some difficulties inherent in the process.

Using my arms to represent the axons and fingers to represent the dendrites, I demonstrated that some of the 'wires' reconnect correctly, some reconnect in the wrong places, and a few grow back but do not reconnect at all. I told her about cognitive slowing-- traveling along dirt roads rather than on the expressways. I also told her that when dendrites do not reconnect, there is the resultant central nervous system tremor (something which I myself do have). Thus, one of the side effects of healing is the presence and worsening of a symptom (the tremor) which some of us did not have before. "Well, I'm optimistic," the friend said. "I'm hopeful."

I am also hopeful. Yet my hope lays in a different direction. I am enough of a realist to know that my own brain damage (the words "brain injury" is a nicer way to describe these profound life-altering changes in brain functioning) will not revert to its' former state of affairs and be good as new. My hope is to be able to deal with what is in an effective loving manner. Of course I keep exercising my brain daily in order to access as much improvement as I can. Yet I also continue to employ workarounds for those times when my damaged brain clamps down on my ability to function.

When well-meaning people say, "Oh but the brain rewires itself," I feel discounted. That is not their intention perhaps, but that is my first reaction. When people say, "Oh but I have [insert troublesome symptom] too," I feel that my own experience with brain damage is being trivialized. There is something within us all perhaps that wishes to normalize the traumatic. It is not a kindness to paint masterpieces of normalcy with the brush strokes of my pain. Because what happened within my brain and within the brains of all survivors of brain injury, is not within the realms of average mundane existence.

I have a fairly clear picture of where my brain damage is and the resultant challenges based on medical testing. I have the results of my M.R.I. in an oversized brown envelope at home. I also have the results of my neuropsych testing done at a brain and spinal cord injury rehabilitation hospital. The M.R.I. films and the final report written by a neuropsych demonstrate in black and white the stark reality of my brain injury.

People in recovery from drug addiction (including the drug alcohol) often claim that they have brain damage in an off-handed way. Years ago, I too had also made this claim in my own ignorance. Indeed, what triggered last night's conversation was a dear friend joking about not having two brain cells left to rub together. I remember what my early recovery from the bondage of addiction was like. When comparing the state of my being then to the state of my being after my motor vehicle accident, I find a vast difference between my former unfounded claims and my present reality. Personally, I would prefer that people in recovery and others quit trying to join our ranks unless they have films and neuropsych reports to back their claims.

Brain damage is a profound alteration in functioning imposed by structural changes. The next time you run into a former co-worker at the mall who did not return to work after her accident and she tells you she has a brain injury now, please endeavor to cast aside your own denial instead of discounting the results of her professional testing. If a survivor of a traumatic brain injury shares his pain over recurring troublesome symptoms, please do not attempt to join our ranks with your claim that you "have that too." And people in recovery, please stop saying that you have damaged your brain unless you have medical evidence to back up your claims.

For myself, I strive to keep addressing my defensiveness and to provide basic brain education where possible in a caring and respectful way. Some of you may know of my involvement with the virtual world of Second Life (registered copyright of Linden Labs). I have a role model there, a young man who is himself a t.b.i. survivor. Vito also uses opportunities as they come up in his daily encounters to educate the masses. I've seen Vito in action. He has far more patience than I do when he encounters brain myths. Vito does not present as being defensive. Vito listens quietly and chooses his words carefully. His ending to every conversation is a bow and the words, "With respect."


sapphoq healing t.b.i.

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Tuesday, September 30, 2008
  Two Brain-Damaged People
Dad has come to live with us. He has some dementia and some aphasia. So now there are two brain-damaged people in the house-- me, and Dad.

Now I know that the official words for my brain damage is "t.b.i." or "traumatic brain injury." The reality is that traumatic brain injury equals brain damage. My brain damage was acquired after the age of 21 in a motor vehicle accident. It is brain damage nonetheless. One physical therapist from Sunnyview Hospital in Schenectady tried to tell me that "brain damage" sounds like one is "damaged" somehow. Yes, my brain is damaged. Why not just call it what it is?

Dad has some restlessness and is wanting to do housework and fix up the house when he is not sleeping in front of the television set. Last week, we decided to stain/waterproof the back deck. First we had to locate the two buckets of stain and the brushes. That wasn't any problem as my friend Ed had given us those things and they were sitting by the back door. Then we had to wait for a sunny day. That happened.

It was a very sunny day. And hot, considering that we live next door to Alaska. So Dad insisted that we wear long-sleeved shirts. The stain getting on our skin would ?eat it? stain it? At any rate, on went the hot shirts. Then there are the latex gloves-- same reason. We started working out of one bucket but then that went to, "Here's another bucket spike. You use your own."

There was lots of staining, doing and redoing. I redid some of Dad's area and he redid some of mine. Two half-gallons were left when we got done. Between us, the stained deck was definitely personalized. There are some drips and dots from my work. And some heavier stained areas from Dad's work. With two brain-damaged people staining a deck, the results will be interesting. A guarantee.

Yesterday, Dad decided that we should put together a clothes rack with vinyl bag hooked onto it for the clothes he has that he no longer wears. This particular clothes rack/vinyl bag thing was manufactured in mainland China. And I swear whoever wrote the instructions hit the "from mandarin to english" button on babelfish. To complicate things further, Dad dumped all of the numbered poles out of their respective bags. The first attempt came out with two longer sides and two shorter sides. There was a break then during which I hoped in futility that Dad would forget about this particular tortorous clothes rack/vinyl bag thing. Didn't happen.

After some "Divorce Court" on teevee, we went back upstairs for a second go 'round. This time we managed to get the vinyl bag installed but then the poles kept pulling out of their holes. And so this clothes rack/vinyl bag thing stands loosely in a corner looking more like a modern art structure than anything remotely functional.

Because of my difficulties with multi-tasking, perhaps I would have had a shot at putting the thing together if left alone in a cave far away from human civilization. No chance of success yesterday. Dad kept up a running commentary as we were working. And between my t.b.i.-related perception problems and Dad's dementia-related perception problems, shoving poles into holes at flush 90 degree angles was not a task destined for fantastic results. Husband said he will "look at it" today.

I think there is something to be said for joining a nudist colony and forgetting about clothes and things like that.

sapphoq healing tbi

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Wednesday, February 14, 2007
  OF ALTARS 2/14/07
My first teacher taught me to use my brain as the ultimate tool.
In fact, I knew nothing of casting circles-- I had learned how to
go on those soul voyages in dreaming, the care and feeding of
gris-gris bags, and rudimentary protection skills using bath salts.
[Conjure bags filled with common kitchen herbs and stones, and
bath salts were the only things she allowed me along with a tarot
deck. Since I didn't know about other tools or altars, I didn't mind].
I had no official altar for many years.

My first physical altar was a piece of wood onto which I had
used magic markers to designate the four directions and had
also inscribed some astrological symbols on.
I had run into a description of how to set up an altar and that was
my result. I kept it in the bathroom and laid it over the sink when
I wanted to use it to light candles or burn incense for specific
things I perceived I needed or wanted.

In this house, I have a circle altar where I do circle work, a moon
altar, an ancestors' altar all in one room which is warded. Also
a mini-shrine to Yemayah in the bathroom. Rocks all over the
house. [I love rocks.] A room of frogs which I also consider
to be sacred space [though not exactly what the authors of
all those books I got had in mind]. And a "witch tree"
with stones around it in the backyard. And gris-gris in my car.

After my car accident and traumatic brain injury, there was very
little I could do. I spent a couple of months sleeping twenty hours
a day. During that time, any spiritual work I did was basic. I found
a fondness for classical music and insisted that the radio station
playing it be left on all night long. I envisioned Kwan-Yin helping
me to heal up when I was laid up. I renewed my acquaintance
with the blessed darkness and shadows. What I didn't know then
was that I was experiencing photophobia from the brain injury
itself. What I did know was that the sunlight outside the window
was too bright.

As my healing progressed, I became gradually able to return to
a bit of circle work while vertical. And now I can once again enjoy
my surroundings. I no longer curse the sunlight daily. [I got prism
lenses/prescription sunglasses]. Today I still retain that sense
of my surroundings being my altar. My brain remains the
only tool I truly need.


sapphoq healing tbi

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Friday, December 22, 2006
  COOL-CAPS ARE COOL 12/22/06
Medical News Today at http://www.medicalnewstoday.com/healthnews.php?newsid=59629
reports that:

"A new cap that cools the heads of babies born with moderate to severe hypoxic-ischemic encephalopathy (HIE) was approved by the Food and Drug Administration (FDA) earlier today."

It is hoped that these caps will prevent brain damage in some of the babies born with hypoxic-ischemic encephalopathy and reduce the death rate associated with this condition. Currently, approximately 20% of HIE babies die and 25% of them are left with permanent disability. Before the approval of cool-caps, there was no treatment option available for this condition.

sapphoq healing tbi and abi

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healing tbi from a pagan perspective

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Name: sapphoq
Location: hiserville, new jersey, United States

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