Links to stories on TBI and vets

Many consequences seen with traumatic brain injury
Reuters India, India – 45 minutes ago
WASHINGTON (Reuters) – Traumatic brain injury may lead to an increased risk of developing symptoms like those of Alzheimer’s disease, Parkinson’s disease

Battlefield brain injuries bring long-term problems: US report
CBC.ca, Canada – 2 hours ago
Military personnel who suffered traumatic brain injuries from explosions on the battlefields of Iraq and Afghanistan are at risk for long-term conditions

Traumatic Brain Injuries Linked to Long-Term Health Issues for
Washington Post, United States – 3 hours ago
By Amanda Gardner THURSDAY, Dec. 4 (HealthDay News) — A new report provides evidence linking traumatic brain injury sustained by troops in combat in Iraq

Combat Head Injuries Tied to Depression, Dementia (Update1)
Bloomberg – 3 hours ago
By Alex Nussbaum Dec. 4 (Bloomberg) — US soldiers who suffer battlefield head injuries face higher risks of depression, dementia and stress disorders,

Brain-injured troops face unclear long-term risks
The Associated Press – 3 hours ago
WASHINGTON (AP) — Many of the thousands of troops who suffered traumatic brain injuries in Iraq and Afghanistan are at risk of long-term health problems

Panel Urges More Screening of Brain Injury in Troops
New York Times, United States – 6 hours ago
By BENEDICT CAREY A long-awaited government report is calling on the military to test all its new recruits for cognitive skills and then do large-scale

Troops with brain injuries face long-term health risks
San Diego Union Tribune, CA – 6 hours ago
By Rick Rogers The good news is that US troops are surviving battlefield blasts and returning home in unprecedented numbers. The bad news is that thousands

Long-term consequences from brain injury
WFIE-TV, IN – 1 hour ago
(NBC) – Soldiers who survive an explosion may still have battles to fight later in life, according to a new report from the Institute of Medicine.

Report: Mild TBI linked to multiple ailments
ArmyTimes.com, VA – 3 hours ago
By Kelly Kennedy – Staff writer A review of about 2000 studies reveals that service members with mild traumatic brain injuries — or concussions — are more

Brain-injured troops face unclear long-term risks
KSWT-TV, AZ – 5 hours ago
AP – December 4, 2008 12:14 PM ET WASHINGTON (AP) – A report headed up by a University of California, San Francisco doctor says many of the troops who

IOM Cites Poor Preparedness for Brain Injuries of Iraq and
MedPage Today, NJ – 6 hours ago
By John Gever, Senior Editor, MedPage Today WASHINGTON, Dec. 4 — The dramatic increase in brain injuries suffered by soldiers in Iraq and Afghanistan,

NHCNE leads ground breaking cooperative conference on
The Dolphin, CT – 14 hours ago
NEWPORT, RI – Civilian and military medical care givers from New England gathered for a first of its kind, cooperation conference addressing Psychological

Troops suffering brain injury face myriad possible health problems
The Canadian Press – 6 hours ago
Traumatic brain injuries have become the signature wound of the wars in Afghanistan and Iraq and troops who sustain them face a daunting array of potential

Report sees long-term problems for troops who suffer traumatic
Los Angeles Times, CA – 6 hours ago
Even mild brain injuries appear to be associated with problems such as seizures, aggression and dementia reminiscent of Alzheimer’s disease, according to

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Traumatic Brain Injuries Linked to Long-Term Health Issues for Iraq Vets

Good news on the tbi news front – the Washington Post is running news of a new report on soldiers with tbi.

The 400-page printed report is forthcoming and will cost about $70 to purchase. You can read the full report online for free (tho’ you have to page through, one page at a time) at: http://www.nap.edu/catalog.php?record_id=12436#toc

While I am really, really happy that national attention is being drawn to this, what worries me is the thought that many tbi surviving vets may get dropped by the wayside and/or be underserved, because people keep repeating that old mantra about “every brain injury is different” and use that as an excuse not to fully engage in helping these wounded warriors heal.

It’s true — every brain is different, and hence every brain injury is different. But that can all too easily stop folks (especially bureaucratically bound professionals) from drawing conclusions and taking steps and reaching out to suggest new solutions to problems we tbi survivors face… just because (they insist) we’re all apparently so different from each other.

From the article at the Washington Post:

“The real bottom line significant finding is that there’s not a good human literature on the kinds of neurotrauma seen in Iraq and Afghanistan caused by blasts,” said Dr. George W. Rutherford, vice chair of the department of epidemiology and biostatistics at the University of California, San Francisco, School of Medicine. “The human literature is really about people who’ve had [brain injury] from car crashes or falling down stairs and, in the military, from shrapnel or gunshots. We’re all worried that blast neurotrauma hasn’t really made it into the human literature.”

This makes it difficult, if not impossible, to anticipate and hopefully mitigate the long-term consequences of such injuries, added Rutherford, who chaired the committee that wrote the report.

So, does this mean… because there’s not blast-related neurotrauma literature in abundance, there should be a bottleneck on looking for solutions and treatments and preventions for military personnel?

Because our Iraq/Afghanistan vets’ injuries are from a different source (and presumedly more severe or at least more severely unique) than your “standard issue” assaults, abuse, car crashes, falling down stairs, shrapnel, or gunshots, does this disqualify them from the benefits of the experiences of countless individuals who have experienced and survived tbi — albeit in a different form and from a different source?

Because there isn’t “good human literature” that’s germane to neuroblast specialization, must that prevent us from doing what we can to help these folks?

It’s a chilling thought, that people who are already disadvantaged by an injury that other people cannot see (and which may be in fact hidden from them because of cognitive issues), may continue to be under-served, because they are not your “run-of-the-mill” tbi survivors.

While blast trauma (and the ability to survive blasts) is a relatively recent phenomenon, in relation to the thousands of years people have gone to war, gotten hit on the head, fallen, been smashed and bashed around, and generally sustained brain traumas, the fact remains that head trauma and brain injury are NOT new to the overall human experience. Where human literature is missing, we DO have human experience. After all, the human race is still here.

Surely, there MUST be a way to employ what we DO know about tbi, surviving it, and recovering from it, to assist the folks who are coming back from one war, only to enter another, once they are back home and trying to find their feet again.

How I deal with the source(s) of my temper issues

Over Thanksgiving, I was telling someone for the first time about my mTBIs, and they asked how I figured out it was a neurological thing, and not just me having a bad day.

I rattled off “cognitive problems” and “memory issues” and “tinnitus” and “constant headaches” as examples. One of the folks who was traveling with me, who has known me for nearly 20 years said, once and for all, “Rage — it was the rage.”

I was abashed to admit it then, and I still am, but it’s true. The sudden violent rages – the yelling, smashing things, going off on people, becoming infuriated over very minor things, rolling along at a full boil, completely unable to stop my downward plunge into the blackest and most aggressive of moods… It’s always been rough for everyone — myself and everyone around me — to weather my tirades. But dealing with the aftermath — mending the broken ties, or having to say goodbye to people I hurt beyond repair, or having to look people in the face after I’d roasted them over the blazing fire of my temper — the aftermath has been at times even harder and more trying to deal with, than the events, themselves.

I can identify a number of sources of my temper flares:

  1. Fatigue – not getting enough sleep makes me think slower, and when I’m not processing quickly enough, my frustration level goes up, while my ability to monitor and manage myself goes down.
  2. Not eating properly – being hungry makes me mad quicker, and eating junk food stresses my body and makes me even more volatile than usual.
  3. Being/feeling alone – I feel assailed and overwhelmed and put-upon, when I’m alone (either for real, or perceived)… I often feel like I can’t keep up, and I’m going to pay for it.
  4. Not preparing adequately for stresses that I know are coming down the pike – not only does this open me up to the increased stress of the unfamiliar, but I also tend to beat myself up for not being better prepared, which just throws gas on the fire of my temper.
  5. Self-recrimination/blame – being hard on myself makes me even more aggressive and short-tempered with others, while cutting myself some slack eases my attitude towards others.

Ironically (or perhaps not), what is best for others, is when I take care of myself. When I’m in a good place and I’m happy with who I am and my place in the world, I tend to go easy on others, have patience, do well. But when I’m hard on myself, everyone around me pays – big time.

So, I:

  1. Make a point of getting enough sleep. Sometimes I work from home, so I can nap mid-day.
  2. Plan my meals and eat well-rounded meals and avoid junk food like the plague it is. I also stay away from sugar, which whacks me out.
  3. Reach out for help, either by contacting a friend/relative, or going online and either researching or participating in forums to help others and get help.
  4. Plan my days and weeks and months ahead of time. I can’t tell the future, but I do know that if I’ve got a lot of appointments in one week, I’m likely to be more tired along the way, so I try to schedule in some down-time. If I’m traveling or visiting family, I try to prepare myself mentally and emotionally for the trips. And if I have a busy week coming up, I try to “choreograph” my time as best I can, so I can dance my way through, instead of bumbling about, bumping into everything that gets in my way.
  5. Go easy on myself, make lists of things I do right, make lists of things I’m grateful for, remember how far I’ve come and how much I’ve accomplished in my life. Even if some of the things don’t seem like big deals to others, they may be to me, so I try to claim every small victory I can.

TBI and temper often go hand-in-hand, but if I know my stressors and I am aware of how my life is shaping up, I can often head off problems at the pass.

Most of all, I try to keep an open heart and a clear head and seek to help others whenever I can. Seeing that others have troubles, too, and seeing that I can help them, not only makes me feel grateful for all I have and makes me grateful for what I can do, but it also gets me out of my head… which can be a very dangerous place to be trapped.

Traumatic Brain Injury Clinic at Elmendorf AFB gives hope to wounded troops

Air Force Live has info on the new TBI clinic at Elmendorf. Check it out!

From the post:

TBI has become one of the most common injuries suffered by our troops during the Global War on Terrorism, with estimates at around 320,000 men and women returning from deployment with some form of TBI.

The patients I see commonly experience headaches, dizziness, cognitive decline, irritability and mood swings, difficulty with concentration, and other symptoms. These are often intertwined with symptoms of post-traumatic stress disorder, which further complicates the picture.

Fortunately, most patients make a full recovery within 3-to-6 months of the injury. I have seen some patients take up to a year to recover, with approximately 15% never fully returning to their pre-injury baseline. The good news is that even in the most severe cases some degree of recovery almost always occurs.

It’s great to see more attention being drawn to this issue, and it’s great to see our armed services starting to rally around this important cause.

EEGs show brain differences between poor and rich kids

News from UC Berkeley highlights recent research that seems pretty important to me…

University of California, Berkeley, researchers have shown for the first time that the brains of low-income children function differently from the brains of high-income kids.

In a study recently accepted for publication by the Journal of Cognitive Neuroscience, scientists at UC Berkeley’s Helen Wills Neuroscience Institute and the School of Public Health report that normal 9- and 10-year-olds differing only in socioeconomic status have detectable differences in the response of their prefrontal cortex, the part of the brain that is critical for problem solving and creativity.

You can read the entire article here.

Personally, I’m not sure why this is so surprising to people. We’ve known for years that trauma causes changes to the brain — both chemically and cognitively and physically. And poverty contributes to trauma. Of course, there may be a chicken-or-the-egg connection — which comes first, the poverty or the impaired brain function? — but at least someone is getting tangible measurements about the interplay between socioeconomic status and cognitive functioning.

This puts a new spin on haves and have-nots.

My answer to (almost) everything: Just Keep Going!

Okay, so I had a good session with my therapist, earlier today, and I did get to recount my long weekend in a way that sounded cogent to me. And I got to tell about how I have patched up a somewhat rocky relationship from many years of fits and starts and faux pas moments. I was actually able to carry on a conversation with someone who used to be really central to my life, but who had drifted away from me, over the course of the years, when I was being injured and not dealing with my symptoms at all.

But on Friday night, I was able to call this person and have an hour-long conversation about what my life has been like for the last two decades. And by the time we were done talking, this person was not trying to get off the phone and run like hell from me, the way they had in the past. I actually heard them saying, “It’s too bad you don’t have time to get together and have coffee tomorrow.”

Wonders really do never cease.

It seems that my newfound understanding of my limitations has actually allowed me to fix what was wrong with key elements of this connection I had with this person. Over the years, not knowing how prone I was to just go on and on and on, I would ramble and let myself get all tangled up in nonsensical chatter… or I would send letters that ranged and roamed and didn’t really have a point. Or I would send emails that were not only rambling, but also got a little too intimate at times — a little too close — to the point where (when I took a long, hard look at myself) I sounded more like a stalker, than an old friend.

I was actually creeping myself out there, for a while.

But then they got back in touch — I guess out of curiosity, just to see how crazy I was, this time. But this time, I wasn’t crazy. I had the awareness of being brain-injured… brain-damaged… and I was aware of the fact that I could very easily veer off course and become that old me that was so annoying and trying and alienating and freaky. I was conscious of how I talked, how I interacted, I kept the conversation on the phone going, I didn’t rush things, and I was able to stop and catch my breath and listen for clues about what the other person was talking about.

I actually did really well.

And the conversation we had was interesting and interactive. I was able to edit myself and keep myself on-topic. That’s something totally new.

Which goes to show that if I’m aware of my limitations and I develop coping strategies to deal with them, then I can be even more functional in my daily life, than if I pretend there’s nothing wrong — like I did for years. (Well, I can’t say I was necessarily pretending — I just didn’t have the awareness that I have now.)

So, if nothing else, this Thanksgiving gave me one more thing to be grateful for — the return of an old friend and a connection I have always valued.

Considering how few real friends I really have, that is priceless.

So, the next time I decide I’m going to give up… I’ll have to remind myself — Don’t. No matter how bad things may feel, no matter how bad my pain may be, no matter how confused and confounded I may seem at times, I still have my little victories, and as long as I don’t quit, don’t give up, don’t hang up the gloves and keep on fighting, I still have a chance at winning.

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.

New tbi screening tool

If you’re anything like me, you have some difficulties communicating with doctors (tho’ I’m sure a TBI isn’t required for that! 😉 and the consequences of not being able to communicate may be substantial. As in, misdiagnosis that can lead to years of pain and anxiety (been there!)… dismissal of issues that cause you serious issues, because you can’t convey your experience to the doc (been there too!)… and potentially either a long wait for the right kind of help, or no help at all — which means not waiting around for the doctor to figure things out well enough to be able to help.

I’m always on the look-out for tools that can help me communicate with the world around me, in particular, doctors and other professional caregivers or healthcare providers can understand.  I’m always looking for better ways to put my situation in words that they can relate to.

Now, it appears there’s a new tool — from an official agency — that may be of use to people like me/us.

Over at http://brain-injury.legalview.com/blog, you can download the HELPS Brain Injury Screening Tool from the Pennsylvania Department of Health

It is a fairly brief screening tool that asks the following questions:

H – Have you ever Hit your Head or been Hit on the Head?
E – Were you ever seen in the Emergency room, hospital, or by a doctor because of an injury to your head?
L – Did you ever Lose consciousness or experience a period of being dazed and confused because of an injury to your head?
P – Do you experience any of these Problems in your daily life since you hit your head?
S – Any significant Sicknesses (that pre-dated your complaints)

While I don’t answer YES to each question — I never went to the Emergency room or was seen by a doctor (at the time of injury) — I answer enough of a YES to the majority, to get onto someone’s radar — which is what has happened with me… thank heavens!

I can’t believe it’s back… Pain redux

I must be really stressed, these days, because lately I’ve been having an incredible amount of pain all over my body.  I think I may have overdone it, driving so much over Thanksgiving — sitting behind the wheel of my late-model Plymouth minivan has a way of doing a job on me… my hips, my knees, my back, my shoulders… But then, I’ve been having intermittent and increasing pain issues over the past few weeks. This last spate is just an unexpectedly intensified version of what has been happening for quite some time.

I’ve had various pain issues for as long as I can remember, with some dramatic spikes in the discomfort over the years, so it’s not something new for me. But this pain is different from the tactile defensiveness I had when I was a kid. It’s in my tendons and in my joints with a vengeance, and it’s really disconcerting to me, because I have not been expecting it. These days the pain is spiking at a level that I haven’t been at in a number of years. What a bummer! And here I had thought that I was getting to a pain-free state. I really did.

This most recent “spate” started some weeks ago, but I didn’t pay much attention to it, because it wasn’t getting in the way. Plus (so I thought) I had other things to think about, than the chronic pain that’s been dogging me ever since that car accident in 1988 (when I was hit from the side by a speeding sedan) that not only scrambled my brain and made it impossible to understand what people were saying to me, but also threw me for such an emotional and behavioral loop that I quit working and started drinking heavily all day, and I almost irreparably screwed up my life — were it not for the presence of people around me who cared about me and were willing to take all my b.s. with a grain of salt…. and hope for better times.

But nowadays, this body-wide pain is “digging in” and making itself really noticeable. I try to get my mind off it, I try to think about all the stuff I have to do each day, I try to relax and “breathe into it,” but it’s starting to make me crazy… showing up in the background of my life, interrupting my thought processes, encroaching on my peace of mind, and reminding me of days gone by when there was no escaping this generalized, terribly non-specific pain that seemed like it would never go away. I become so nauseous, when I think about this being here and never giving me a break. I have gone through months and months and years of persistent pain that showed no signs of abating, and when I think back about it, and I remember what it’s like to be there, I start to feel really ill.

Which makes me feel like a wuss. Because I have dealt with this before, and I’m determined to do it again. But with some kinds of pain, it literally feels like it’s never, ever going to end. It messes with your mind. It screws up your brain. Even more than it already is. Add chronic, debilitating pain to a mild traumatic brain injury, mix liberally and spread it out over weeks and months and years, and you’ve got a potent cocktail for being driven to the brink of sanity.

Back in 1988, before I could put two and two together and had the information that tbi — especially car accident head injuries, or whiplash — can cause an onset of pain and aches, I went to all sorts of specialists to determine the nature of my condition. They came up with nothing other than that it might be an autoimmune condition like arthritis, and I needed to just go on meds, reduce my stress, get plenty of rest, and stay out of the sun, in order to get better. I think I completely forgot to tell them about my car accident. I didn’t think it had anything to do with anything, and I can’t recall them ever asking me about it.

I did all the stuff they told me to do to address my pain — AND I spent a lot of time (and money) going to specialists who could tell me not one substantive thing about what I was going through and what I could do about it. 20 years ago, I spent my holiday savings (that was supposed to go to presents) on an expert located half a day’s drive from my home. I took a day off work, corralled a friend to drive me down, and I spent a very unfulfilling day with a gentleman who had a bunch of gizmos and a rich pedigree of education and experience, but who could still do precious little for me. He couldn’t even confirm or deny what was going on with me. I can’t speak for the others in the very long waiting line of decrepit and suffering folks… I hope he could at least help some of them. Or just one. Anything.

He didn’t do much for me, other than to tell me that he couldn’t tell me anything definitive about my condition.

So much for my holiday presents fund. So much for my day out of work. So much for the next three years of my life, which I spent chasing — in vain — a plausible solution for my condition.

I eventually just quit going to specialists, because they would tell me, “Well, we took a lot of blood from you, but we still can’t tell you anything specific about your situation. But here are some drugs to help cut the pain a little bit.”

When those drugs won’t work, they’d give me something else.

When those would work sorta-kinda, but they would tear up my stomach, the docs would give me something to cut the pain.

“What will this do to my stomach? Will it protect it?” I asked.

“No,” they told me, “but you won’t be in so much discomfort.”

“So, let me get this straight… I’m taking meds that are going to eventually eat a hole in my stomach, but this other pill will keep me from feeling it… and eventually I might have a hole in my stomach, but never even feel it?”

“Something like that,” they told me.

After talking with some trusted confidantes and thinking long and hard about how little good these advanced meds had done me — some of the side effects were things like malaise and short-term memory loss and disorientation… at a time when I was doing contract work in a number of different locations and could not afford to forget where I was(!) — I decided to discontinue my medication regimen. I resisted being “non-compliant” with all my might, but I was left with no choice, ultimately. I wasn’t getting better, I was feeling worse. It was impacting my quality of life in pretty scary ways. And I just didn’t have the money to cover all the testing that was required every month, since I was unable to work full-time in a job that gave me health insurance, due to my pain issues.

Ironically, I met someone at that time who was suffering from fibromyalgia — a condition which involves a whole raft of really difficult and distressing discomforts. This person had to sell all their furniture (since they couldn’t sit/lie on it and they needed the money) and go on partial disability. I knew I was in a lot of pain, but their condition was utterly crippling. That great degree they’d earned from a great university… the good job and the cool apartment they had… their whole shootin’ match was in the process of disintegration because of their “fibro” issues.

I did learn a lot about chronic pain, in the relatively short period I knew this person. And I learned — perhaps most importantly — that no matter how bad I may feel like I have it, there is most definitely someone out there who has it a whole lot worse than me… who I may be able to help in some small way.. and who I can probably learn from and gain some knowledge from. I learned alot about chronic pain, at that time. Even if my condition was far less disruptive than theirs, what I learned about stretching and rest and nutrition, was priceless. And I believe it really helped me, when I incorporated it into my life (I quit smoking, started eating right, made a priority of getting ample rest, and I changed shoes, so I’d have better support and less impact when I walked). Even if they were still in terrible pain – and eventually moved across the country in search of a health solution — which they found in Chinese medicine — I was able to adapt my life in ways that eased my pain considerably.

Here I thought I was in the clear… I have been relatively pain-free for over 10 years now, with intermittent flare-ups that come along when I haven’t rested properly, or my eating habits SUCK (not often, but it does happen, now and then). I don’t do much dancing, as my knees can’t take it. And I do sometimes feel it in my elbows and back and hips. But I count myself fortunate, that I haven’t been wracked with agony the way I was from 1988-1992.

Until recently.

Now, I have that sick, sinking feeling that comes from the pain that radiates out from seemingly every nerve in my complaining body, wearing me down, tiring me out… I try not to pay much attention to it. I try not to think about it. Some days I can even forget that it’s there (till I move, of course). But then it rears its ugly head, and I’m back “in the hole” again. Sheesh!

Currently, the pain varies, from day to day. A lot of it is across my lower back, around where the tops of my pelvic bones can be felt. My hips and glutes are tender, too — tho’ moreso when I make contact with something around me. My thighs feel like they have hot knots of burning rope tied tightly around them, and my shoulders and elbows are taking turns giving me twinges and pangs.

My neck is a mass of knotted muscles that complain bitterly when I stretch them. My fingers are stiff and tight — they ache when I flex them, and they complain when I extend them.

My skin feels like it’s being peeled back from my bones, and my clothing is hurting me terribly. The feel of fabric on my wrists makes me crazy — it feels like someone is wrapping a rusty choke chain tightly around my wrists… and twisting. Hard. I normally push/roll my sleeves up to my elbows, because this sensitivity is nothing new. I’ve had it since I was a kid — along with pain on the tops of my thighs and behind my knees. But these days, the pressure of the fabric on my elbows is really bothering me, so I have to put up with the chafing of the fabric on my wrists.

I’m sure this isn’t sounding really great to you, right now, but I have to tell you what it’s like, so I can report back about what I’m doing — so you can see how well I am able to bounce back.  It’s all about the bounce, baby!

Here’s what I’m planning to do:

Try Arnica — a homeopathic remedy that’s recommended in some places for muscle aches. I’ve used it topically for bruises and achey muscles, and I picked up some little pills to take. I’m to dissove 4 pills under my tongue, 4 times a day.

Take hot showers — this always helps me. I’m bringing a towel to work, because they have showers here, and I may need to warm up.

Get plenty of sleep — don’t rush out of the house, first thing in the morning, but do some work at home. Make sure I have plenty of time to sleep.

Cut out the caffeine — Ouch! But what choice do I have at this point? I need to cut back, anyway — the 3-5 cups I’ve been drinking each day over the past week may have something to do with my pain and my difficulty sleeping.

Pray — to whomever is listening… they got my butt out of some serious trouble in the past, so I’m pretty sure someone out there is listening. Even if they aren’t, I’ll feel better.

I suspect that this pain stuff is leftover stress from the long Thanksgiving holiday I was just on. That’s what I’m hoping, anyway. With any luck, good rest and reducing stress will help me get back to some semblance of okay-ness.

Back from the holidays, back to work

Of course, the holidays are really just beginning, but the holiday travel piece is over.

I will not be traveling over the December holidays… it’s just too much energy, too much exertion, and it completely overwhelms me far past the level that I’m comfortable with.

Once upon a time, it was fine and dandy for me to constantly push the envelope… travel throughout November and December… push myself to do-do-do for the holidays, doing all the shopping, all the driving, all the travel, all the social maneuvering… just putting my head down and soldiering through, regardless of the toll it took on me.

No more. This year, I am seriously taking care of myself. I did my family duty for Thanksgiving, and it really tested me in some scary ways. Ways that I don’t care to repeat in another month or so. I was able to get periodic naps in, and (for the most part) I was able to watch what I was eating and doing and saying and thinking, so that I didn’t get too far out ahead of myself. But the few times where I did lose track of what I was doing, how much I was sleeping, what I was eating… I melted down in some sad and sometimes scary ways.

One of the times, I was visiting an old friend who had company drop in to visit for a little while, and the shift to lots of social interaction really threw me off and triggered a major meltdown after they left. I had anticipated — and desperately needed — a quiet evening with this person, just catching up about what’s been going on in my life for last couple of years, but I was unexpectedly thrust into the midst of a lot of very happy, very gregarious people who had no idea how loud they were, and had no comprehension of what the effect of their noise was on my sleep-deprived head. I held it together for the hour or so they were there — I didn’t feel I had the right to chase them away, and I didn’t want to spoil their fun, just because I was having auditory processing issues. But when they left, I just fell apart — tried to hold it together and have a pleasant conversation, but ended up in tears.

Feeling damaged. Feeling deficient. Feeling unfit to be around people. Because I just couldn’t follow what they were saying, I was so tired, so overwhelmed, so unprepared. I hate it when I get like that — it ruins the simplest of times, the happiest of times, and I have a hell of a time dealing with the fact that I’m affected this way.

Fortunately, this friend of mine has seen a wide range of human behavior in the world, and they’re not easily intimidated — especially by me, who they know better than I know myself, in some ways. They have an uncanny ability to discern who is really inside the person they’re interacting with, and when I broke down in mortifying uncontrollable tears and couldn’t talk for half an hour, they let me be, rubbed my back, brought me a glass of water and a blanket to wrap around me, and just let me be, till I got my bearings and could be human again.

The other time I started to lose it, was when I was behind the wheel of my car, which was not good. It was raining and dark, and I was having a hell of a time seeing my way through the night. On top of it, I made some poor choices about how to avoid the parking-lot traffic on the freeway, and I ended up taking long back roads that didn’t have a whole lot of human presence nearby. A little scary… not terribly frightening, but what might have happened is haunting me a little today.

I was okay company in the car, until near the end of the trip, when my traveling companion started to talk to me, and I started to flip out — yelling and saying unkind things and generally being a really difficult person to deal with. It was a really shitty way to end up what was otherwise a mostly okay Thanksgiving, and I really regret having said the things I did. It’s like these words were coming out of my mouth, and I couldn’t stop them. I think the talking got to me — the auditory processing stuff, again.

Thankfully, as I drove through the night being a total asshole, I was able to dimly perceive that I was in no condition to be indulging the rage that was coming up in me… that I was operating on diminished resources, to begin with, and I needed to just shut the hell up, which I did.

The last half hour of the trip was no friggin’ fun, and my outburst(s) made a taxing time even more troubling. But at least I was able to shut up, eventually. And my traveling companion may yet forgive me for saying what I said before I dropped them at their place.

Just one more thing I need to make amends for. Thankfully — and I mean thankfully!!! — I am NOT traveling any more for the next six months, at least, I will not be dealing with family up close and personal for at least another 6-9 months, and I will have plenty of opportunities to clean up my act with regard to the person I roasted the other night.

Plus, I’ll be getting my neuropsych results back in the next month, so I’ll be able to explain myself better… and take steps to:

A) Fix what can be fixed

B) Compensate for what can’t be turned around

C) Avoid like the plague those things that cannot at all be helped

If nothing else, there’s always tomorrow, always another lesson to learn, always another chance to make good on the promise I have, as well as more chances to make up for the parts of me that are not cooperating the way I and/or others want/need them to behave.

Onward and upward…