Life with TBI : Lost and Confused

In the days Before Injury (BI), my life was different.  I completed a Masters in Social Work and and a full time career.  I served both active duty and reserve in the military.  I was medically retired after 17 years because of the injury.  I organized complicated trainings and retreats.  I ran marathons.  I traveled alone and in groups.  I was part of the Criticsl Incident Response Team to the 2009 shootings at Ft. Hood.  In short, I managed stress, frustration, and change well.  

This is life after injury.  It is a direct quote from my Face Book status.  

“I am totally losing it. 

This is brain injury:

I had to go to my neurologist today in Kennewick.  Normally, a friend drives me to and from.  Today, she could get me to the appointment but not back.  She had another requirement she needed to attend.

So, I’m alone in Kennewick, waiting for the Grapeline shuttle to get me home. I don’t know kennewick.  I had looked up the bus routes to get me to the transit center to get the shuttle.  It’s one transfer.. But it gets me there 5 minutes before the bus and I have to figure out the right transfer at the first transfer point.  And deal with all the sensory stimulation.  I opted to call a cab for a pick up.  I could barely manage to communicate when I needed the ride, where Imwas, and where I was going.  The dispatcher had to tale me through it, several times. I promptly forgot what time the cab is picking me up and had to call her again.

It’s lunch time.  My friend suggested a Mexican place.  I went in… A few people.  But no sign telling me if I had to sit, wait to be seated, or order at the front.  I got so anxious, I left and went to a small bagel place down the street.  It’s quiet.  And the counter person is really nice.

I’ve taken lorazepam because I’m coming totally unhooked. 

Tell you what, if I didn’t have Riley, I’d be curled in the fetal position in an ER telling them I can’t get home.  Probably get a psych eval.  

And I still have to tolerate the hour shuttle ride home and still get to where it leaves.  

I function much better in familiar settings or with someone else.  Typical of some forms of brain damage.

There’s no one here and I’m scared out of my wits.”

The cab got me to the Grape Line and I made it home safely.  But, I just can’t function outside of routine and familiarity.  This should not have been hard.



 

Employment and TBI

I’ve been away from work for a month due to some medical issues resulting from the brain injury.

Last week, I had to turn in a letter from my doctor that I couldn’t work.

The HR “specialist” took the opportunity to chew my ass.  Short version: she asked in the past for notes from my doctor.  To anyone in mental health or healthcare, “notes” means charting.  I sent in several months worth of medical charting, not realizing she had no right to actual charts.  She never corrected that misunderstanding and continued to ask for notes.  She never explained exactly what a “note” needed to contain.  She never put anything in writing. the letters from my doctor early on just put down hours I could work, not specific duties.  She never told me that wasn’t sufficient, just kept asking for “notes.”  

So, part of the lecture was that I didn’t have Traumatic Brain Injury, I “just” had a “concussion.”  She demonstrated her ignorance.  The ICD9, the manual medical professionals use to code diagnoses, doesn’t have a code for TBI, just concussion.  And post concussive syndrome.  So, by ICD 9, I could have been in a coma for two weeks and still have “only” a “concussion.”

Part of why I’m off work is the doctors recently diagnosed a seizure disorder.  I had at least two full seizures right after my injury, when my brain was swelling. (Short story: two ERs missed the brain injury severity.  One sent me home with unequal pupils because my MRI and CT scans were ” clear.”  What the actual f*^%” was that?!). So, according to this “specialist” in HR, my seizures aren’t connected to the “concussion” because people can just have seizures for no reason.   I have complex partial and absence seizures.  They’re easy to miss.  I didn’t realize I was having absence until a friend pointed out what was happening.  The complex partials leave me exhausted and confused.  I have trouble putting words together.  I put it down to overstimulation and exhaustion.  

The HR person decided that she would  not provide OWCP with the written request for pay.  Ironically, now she has “notes” from my doctor excusing me from work.  But, not the ” acceptable” diagnosis because my seizures aren’t related to the brain injury.

Fortunately, family is now involved directly with OWCP to help try to resolve this.  All I really need is my neurologist to write something that connects my seizures to the brain injury.  Not that the HR person told me this. 

I have service connected disability pay right now.  Between that and savings, financially I should be ok for a while.  

This is a rant.  I won’t even get into the crap my new supervisor was pulling. 

Sadly, I used to love working there.  It was my dream job, turned nightmare.  The only good thing now is working with other veterans. 

I always struggled since the injury.  It was exhausting and I often cried, got migraines.  And was always exhausted.  The only reason I succeeded  in very limited work my old supervisor had me doing, was duty was so light and she buffered me from the stress.

I am pursuing medical retirement.  I really can’t do the job.

The Importance of Rescue

The Importance of Rescue

My name is Bobby. Just over three years ago I got hurt and dumped in a field. Mommy told me that my leg was broken in two places and my shoulder dislocated. I don’t remember how I got hurt. I was in pain and scared until someone took me to Ferret Haven. (Spokane, WA) Paula Woodland​ is the rescue mom and runs all of it with volunteers.

I was taken to a ferret doctor who operated and fixed my leg and shoulder. I wasn’t very good at holding still so the pins moved. I had to get another surgery!

A nice lady, Susan, took me in her home and took care of me until I healed. I think she’s called a “foster mom.” I wasn’t there long but she was so nice and I still love her.

Ferrer Haven helps many ferrets.  Some of us are hurt or sick. Some were left because their humans didn’t understand what a ferret needs, or they had a baby, or moved. There are a lot more reasons. If we’re lucky, we go to a rescue that helps us find homes or takes care of us until we go to Rainbow Bridge.

I’m one of the lucky ones.  I went to a new home soon after I healed from surgery. I get to play and have a cat-friend (Brigid) and Kaliyah. I really like Kaliyah. She’s a ferret like me. She can be bossy sometimes but mostly we play and cuddle together.  My mommy takes great care of us.

If you want to adopt a ferret, read up about us: what we need, common health problems, expenses and other stuff. Find a good ferret doctor. We’re different from cats and dogs and need an animal doctor that knows about us.  Did you know: we’re obligate carnivores and live 6-10 years.  We need to play out of the cage 2-3 hours a day.

There are many ferrets in rescues throughout the United States and Canada.  We are good ferrets needing a home.  Of you adopt from a rescue, you give someone a second chance at a forever home. The rescue volunteers can help match you to a ferret buddy and answer questions.  Rescues always need volunteers.  If you volunteer, you can learn about ferrets before you bring someone home. And you help many other ferrets!

Bobby Recovering from Surgery

Bobby Recovering from Surgery

Bobby at his New Home

Bobby at his New Home

The American Ferret Association website (http://ferret.org)  is a good place to start learning about ferrets.  There’s also a list of ferret rescues.  The FaceBook groups Dookerz Ferret Rehoming and Ferrets Dooking is the USA helps connect ferrets in need of homes with a forever home.

This is me.. When I was hurt. And in my home now.

(My mommy helped me write this)

Post Traumatic Stress Disorder

Today’s post departs from the world of brain injury to address an important issue in the lives of Veterans, military, and civilian populations. Post Traumatic Stress Disorder is an anxiety disorder that changes how someone’s body and mind respond to stress. Usually after a stressful event, the hormones released during traumatic events return to normal levels. The body recovers, and the individual assimilates the event effectively. In PTSD, the stress hormones do not return to normal. The individual does not process and assimilate the event effectively. The event changes how people view the world and themselves. Examples of experiences that can lead to PTSD include: accidents, natural disasters, war, assaults, terrorist actions.

There is no known reason why some people develop PTSD and others do not. There are some theories, such a genetic predisposition, exposure to past trauma, depression, and the immediate support system after the event. Individuals with a strong, accepting support system tend to have a lower incidence of PTSD. It is not a sign of weakness. People of all backgrounds, ages, and all genders can develop PTSD. (reference)

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Today is Not the Day

Several years ago, I was happily training for marathons and had the goal of an Ultra. I took for granted the health that allowed me to run. I took for granted running. Sometimes, I even whined about my long 18-20 mile training runs. The brain injury showed me never to take your (or family’s) health and life for granted. I have several issues stemming from the injury. It all changed in a second.

I returned to running nine months after the injury. This process has been a combination of frustrating, depressing, and absolutely exhilarating. I can run! It was fun seeing steady improvement over time from my first wog/ slogs after the injury to now. After the injury, I ran a familiar and favorite route. Over many months, I took 9 minutes off my time on the 5.3 mile route. I decided to reset my PR clock to BI and AI (Before Injury and After Injury). Mostly, I now run for the joy of running.

I fought hard to run again. I could not see myself giving up the joy of the road totally- even if it does suck sometimes. One of my clearest memories of early grade school was in first grade. I pestered the playground teacher to “count while I run to that fence and back.” Probably drove them nuts after a while. That was the start of the Idiocy. 😊

I run now because I love it still. It is a reminder and physical demonstration of how hard I fought to heal and how far I have come. I may never run a marathon again but I am on the roads. There is a shirt that says, “There will come a day where I can no longer run. Today is not that day.”

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“Mild” TBI: a Misnomer

Currently, brain injury is categorized in three different levels: mild, moderate, and severe. The level is generally decided by loss consciousness and your score on the Glasgow Comma Scale.

The problem lies in nomenclature. While it is convenient for medical personnel to place brain injury patients in categories, it is not in the best interest of the patient. The categories are supposed to be a guide in identifying what kinds on interventions and needed and the likelihood of complete recovery. Although most people with a mild TBI recover fully, there is a fair percentage of patients who have ongoing symptoms that negatively impact their lives.

I was on the edge of “mild” TBI and moderate. My loss consciousness was unknown by the ED. I was discharged from the ED with orders to follow up with my physician in a few days. My coworker who picked me up noticed a significant cognition change. He put it down to shock. I spent 48 hours unable to sleep (change in consciousness). I had two seizures that resulted in my urinating on myself and biting my tongue. I didn’t understand those were seizures until later. I thought I just didn’t wake up to go to the bathroom. I didn’t mention it to my doctor. My cognition was significantly altered and I was making decisions that were not the best. At one point, my pupils were unequal. Due to the initial mildTBI diagnosis, time was lost in staring therapies that may have prevented later problems.

My diagnosis was upgraded by the neurologist from “mild” to “moderate” later and I was identified as having post concussion syndrome.

Literature shows that a fair percentage of mildTBI patients so have ongoing difficulties. Often, they struggle to understand why they have changed and to communicate clearly with doctors. Frequently, the don’t receive needed therapies at all or much later in the process.

A brain injury is a brain injury. You either have one or you don’t. “MildTBI” is like saying a woman is “mildly pregnant.”

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