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Thursday, December 25, 2008
  Falling 12/25/08
Some weeks ago I fell twice in one week.
My feet went out from under me one Saturday afternoon while walking and I fell flat on my back.
That was painful.

That Tuesday evening I took a hot shower in hopes of relieving the soreness in my back from falling a few days before.
I started feeling a bit odd and I noticed my field of vision getting spotty.
I managed to turn off the shower water and got out of the tub using the safety bar.
I went to grab the towel from the towel rack and at that point passed out.
When I came to, my elbow was shielding my head from the floor; I was on my right side; and my arms and legs-- particularly the left leg-- were shaking.

I managed to drag myself to the toilet bowl where I sat until I was able to walk.
Mate was in bed and had missed the whole thing.
We do keep a phone immediately outside the bathroom door for emergency purposes but all I could think about was the bright lights in the emergency room and not wanting to subject myself to all of that. So I didn't go.

The next day I was informed by the primary care doc that I have shower syncope. Basically that means I can faint in or around hot showers. Whatever.

A couple weeks later and I am still sore and having some rather painful right-sided back spasms. As long as I don't get up, shift positions, shit, or breathe I am okay. Back to the primary care doc's. I am starting physical therapy next week.

Meanwhile I have my tens unit running during awake hours. That helps the misery somewhat.

sapphoq healing t.b.i.

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Monday, July 07, 2008
  Kristen Furseth-Mullaney's triumph
http://www.freep.com/apps/pbcs.dll/article?AID=/20080706/SPORTS17/807060590/1065

A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.

sapphoq healing t.b.i.

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Wednesday, May 28, 2008
  Stuff that annoys me, stuff I am happy about
A list in no particular order inspired by a blogger who wrote a list of how to annoy an aspie. Unfortunately, I can't find the link to that particular post at the moment. When/if I do, I will add it.

If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.

If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.

So here goes:

1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.

2. Repetitive forms.

3. Too loud, too bright, too scratchy.

4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.

5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.

6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.

7. Medical doctors who do not listen.

8. Expressive aphasia sucks.

9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.

10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]

11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.

12. Being talked down to by professional "helpers" who don't help.

13. Dealing with the mail order pharmacy.

14. Fatigue.

15. A body that does not bend due to neurology.

16. Inadequate pain management.

17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.

18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.

19. Perception problems and visual disturbances getting in the way of a variety of activities.

20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.

21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.

22. Unclear directions.

23. Not enough help to do the things that I can no longer do.

24. A-motivational syndrome-- mine.

25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.

***

Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.

sapphoq healing t.b.i.

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Wednesday, December 26, 2007
  Brain Injuries and P.T.S.D. 12/25/07
Several articles have cropped up declaring that brain injuries "cure" Post Traumatic Stress Disorder. In reading through them, I found that what they meant to say is that brain injuries demonstrated in either of two specific areas of the brains of research subjects lessen the incidence of P.T.S.D. The two areas are the amygdala and the vmPFC or the ventromedial prefrontal cortex. The research results reported are actually fairly impressive. Folks with insults to the amygdala had zero incidence of P.T.S.D. And only 18% of folks with insults to the vmPFC developed P.T.S.D.

No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.

Nothing reported over on Medscape yet so it is too early for me to get excited.

sapphoq healing t.b.i.


http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html


http://www.sciencedaily.com/releases/2007/12/071224124639.htm

http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms

http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience

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Friday, June 29, 2007
  Letters to My Self *suicide, trigger*

Dear Heartlove,


Forgive me, if you will, my familiarity. I have known you for your whole life, although--like one in the deepest of comas-- you have consistently failed to recognize me. I am skin of your skin, blood of your blood, your breath, your everything. And you are mine.

You say you are endeavoring to fit your life together like a puzzle. Yet the puzzle has no pieces and nothing can be glued together. Stop that.

Here is something for you that you can do. Throw out those old puzzle boxes. Your life is an intricate weaving together of diverse elements into patterns. Patterns that defy the status quo. You are you.

You are not your labels, problems, disabilities. You are you and only you. There is no path for you to be on. You are a trailblazer who has been growing new legs. Get up now and walk on those legs, receiving the strength that is yours and yours alone. Then go out and share that strength. Only in the interconnection of all life will you ever find happiness.

Love Always,
All That Is





Dear "All That Is,"

What kind of stupid-ass name is that? I don't much like you. You and your talk about interconnections and weavings and patterns.

I have suicidal thoughts. They are my Plan B. Plan B is persistent and seductive in her constant whisperings. Plan B says,

"You won't find any jobs. Look, see there are no state jobs waiting for you in the wings. You are
scheduled to language away trying to catch up to the grindstone. There is poverty and degradation .
I'm a secret Plan B. You mustn't tell. Anyone."

You try living with Plan B, always there in the background with her twirly sheer skirts and flirty ways. It's not easy to be me and I may die. Still, it is a lot better than being you. You pompous assinine zipperhead. And by the way, I am no one's "heartlove."

In Total Apathy,
spike




Dear Heartlove,

"I always have options. I just don't always know what they are." Didn't you used to say that?

Love,
All That Is




Dear Pompous One,

Bugger off.

spike




Dear Plan B,

You are not a real Plan B. I name you Imposter. You are a collection of lies and old tapes. I repudiate you.

I may not know where I am going. I do know that I will make it through this.

You can bugger off too, along with that "All There Is" Pompous Asshole.

Basta,
spike

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Monday, June 25, 2007
  Excuses, excuses, excuses
Anthony O'Toole told the court that an old head injury [not several pints of alcohol] caused him to have seizure activity which necessitated the calling of an ambulance and himself being intubated in order to maintain airflow. The stupid judge bought that story. The cop who arrested him for public intoxication apparently knew better.

To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.

Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.


Here's the link.

sapphoq healing tbi

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Thursday, May 17, 2007
  INSTITUTIONALIZATION VS. REHABILITATION 5/17/07

In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.

Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].

To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.

In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.


sapphoq healing t.b.i.

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Thursday, February 15, 2007
  VISION RESTORATIVE THERAPY 2/15/07
http://www.medscape.com/viewarticle/552149

Over at the International Stroke Conference most assuredly held in some warmer clime than this one, Dr. Jose Romano presenting his findings. Using specific patterns of light, patients who had narrowed vision fields-- from traumatic brain injury or from stroke-- were found to have increased field of vision after completing a course of treatment with V.R.T. (Vision Restorative Therapy). The device has been F.D.A.-approved. Medicare reimbursement for treatment with V.R.T. is being sought.

Due to my own experiences with Vision Therapy and the use of a specific colored light, I am cheering loudly!

sapphoq healing t.b.i. and a.b.i.

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Monday, February 05, 2007
  MACULAR DEGENRATION MEDICATION AND RISK OF STROKE IN OLDER PATIENTS 2/5/07
http://www.medscape.com/viewarticle/551479

A medication called Lucentis (ranibizumab) has been tentatively linked to an increased risk of stroke in older patients in an ongoing study designed to test its' safety. Lucentis is prescribed for patients who have the wet form (neovascular) of Age-related Macular Degeneration (A.M.D.). The pharmaceutical company Genentech sent a warning letter to physicians on approximately January 23rd.

In the study, patients who got the recommended dose of ranibizumab were at increased risk for stroke over patients who got a lower dose. Patients who have a history of stroke were also at increased risk for having a second stroke. There was no increase in stroke-related deaths.

Age-Related Macular Degeneration is a disease of the retina. It is the leading cause of vision loss in the elderly. It is progressive. It comes in two forms-- dry, and wet. The dry form can shift over into the wet form which is thought to be the more troublesome of the two. Although a thorough eye examinations including dilation is not prioritized by adults aged 50 and over, there are advances in treatment for A.M.D. and hopefully at least one of them will not care the increased risk for stroke.


sapphoq healing t.b.i. and a.b.i.

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healing tbi from a pagan perspective

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

"I am what I am and what I am needs no excuses." -La Cage aux Folles.

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