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. ūüėä

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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New Year…New Hope?

It’s now 2015. The New Year is supposed to be a time of new goals, renewed hope, and new beginnings. Honestly, I feel more stuck and see little chance of my situation changing.

There is much in my life that I have no control over. Other people have the power to make decisions about my life. My seizures are uncontrolled still. There are times I just want to give up.

There are a few pinpoints of hope for this year.
Riley completes his Service Dog training at the end of next month. Even in training, he helps make things easier.

My seizure medication decreases the seizures. Every time the dosage is raised, I have fewer seizures. I still am at the lower end of therapeutic; there is room to increase the dose a few more times.

The neurologist is referring me for another round of neuropsychology testing. There is some concern that the uncontrolled seizures may have damaged my brain. I’m having more trouble with spoken language. It may just be stress and fatigue. I’m also being referred to an epileptologist. The hope is my seizures will be controlled by the time the visit is authorized and the appointment made. Honestly, I am sick and tired of tests and rehab. Tested Enough Already!

My goals for the year focuses on what I can do:
1. Run 16 miles at one time. I haven’t been able to put in serious distance since the injury. Sixteen is a challenging, but likely possible, distance.
2. Find a way to manage the anxiety and depression that seems to be dogging me.
3. Run 800 miles this year.
4. Write more
5. Take action where I can and let go of what I can’t change.

I hope 2015 is a good year.

Happy New Year!

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Surviving the Holidays

This time of year is filled with activities: parties, shopping, wrapping presents, for some- church happenings. Schedules change and chaos rolls in as the Big Day comes closer.

For someone with a TBI, the holidays are difficult. The changes in routine and commotion around the holiday challenges their coping skills. I find Christmas exhausting and stressful.

There are some things those with TBI can do to help themselves.
1. Take down time when you need it. Sometimes, getting away from the situation helps.
2. Monitor your alcohol intake. Alcohol often makes TBI symptoms more difficult to mange.
3. Keep your schedule. I fine having a routine helps me to remember things and provides a comfortable framework.
4. Be willing to excuse yourself from a party, meal, or gathering if it’s too much.
5. Try to complete tasks in smaller steps and early. Shop and wrap presents early. I take several days to complete the wrapping of presents.
6. Say “no” when necessary. On Thanksgiving this year, I made the mistake of not saying no to a task that was too much for me to handle. My parents came down to visit. They brought a side dish and a pre-cooked turkey. However, I still needed to prepare several aides myself. Everything went fine when I could do one task at a time. When I had to monitor everything in the oven and on the stove, I lost it. Fortunately, my Mom stepped in and took over. I still had a migraine that lasted two days. I needed to say no.

Caretakers and friends can help.
1. Understand TBI.
2. Be patient with us. We are trying.
3. Notice when we are getting overwhelmed. Ask if we need a break. Sometimes, we need prompted and encouraged to take the break we desperately need. Many of us are trying to be who we were before our injury.
4. Offer help in a respectful way. Mom asked what I needed and when I couldn’t answer her clearly, she gave me direct tasks while she took over monitoring the oven and stove.
5. Be flexible.
6. Help find alternative celebrations. After Thanksgiving, my parents suggested we eat out both Christmas Eve and Christmas Day. This took all pressure off me to try to figure out special meals.

TBI brings changes. However, the holidays don’t need to be stressful. They may be different. Some of the traditions may need adapted.

Happy Holidays! Be well!

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Bobby and Kaliyah “helping” me unpack a package.

Thoughts

I haven’t posted for a while. It’s been a hard time. I try to keep the blog a positive place, where people can come for hope, even as it chronicles some of the hardest part of my life. I suppose to provide an honest picture of my experience with brain injury, the hard parts should also be addressed.

Recently, my life is on a treadmill. Work is a difficult place. I can only do a limited amount of my job. Complicated issues or processes are not possible for me to follow. For example, last time I attempted to assist with an admission and transfer of a patient seeking detoxification, I couldn’t keep track of all the steps, even with a check list. It required moving between tasks rapidly and keeping track of more than one thing. I had a complete emotional breakdown. If I stay in my narrow lane, I function fairly well, with memory aids and other tools. I’m exhausted constantly. And incredibly frustrated. I decided to retire. The system is messed up. When I submit the paperwork to retire, I immediately have to stop work- no pay or benefits. It takes up to 9 months to a year for Office Personnel Management to make a decision, including denial of application, meaning an appeal. I’m not independently wealthy. No retirement here. I’m not really doing my job, neither my employer nor I are benefitting, but I can’t retire. I’m stuck. Can’t move forward in any direction. The only possible solution is if OWCP (federal workers compensation) agrees that I can’t work in this capacity, or in any other position at the VA. Then, they can put me out on disability until the retirement comes in. Only, no one seems to know how to start that process. I probably have to wait until OWCP makes the move.

I’m so depressed and frustrated. I suppose if my employer is happy with me doing less than 15% of my job, I still get paid, who cares if I’m really contributing much? It’s probably stupid that I want to actually contribute.
The system needs changed.

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Along the Road

A few posts¬†ago, I mentioned a spiritual experience I had during the accident that caused my TBI. ¬†It’s the only thing about the accident that I remember clearly. ¬†I recently struggled with one vital,part of the lesson: no matter what happens, I’ll be ok.

Recently, I am extremely anxious about my employment. ¬†My injury was on the job. ¬†After struggling for three and a half years, I don’t see enough improvement to let me return to full time work. ¬†I struggle to finish a short work day. ¬†I also can’t perform key aspects of the position. ¬†I made the decision that it is best for me to medically retire.

Thus enters the chaos. ¬†If I put in my retirement package, I immediately have to stop working. ¬†My Worker’ Comp stops as well as all my pay and benefits. ¬†Sounds good, right? ¬†Well, it take up to 9 months for the retirement to process through federal Office of Personnel Management (OPM). ¬†There’s no way I can retire financially without ending up declaring bankruptcy, losing the house and most of my possessions. ¬†The worst part is I most likely won’t be able to keep Brigid, Bobby, and Kaliyah. ¬†Those critters bring so much laughter and love ¬†into my life. ¬†It is impossible to watch ferrets play without smiling. ¬†Brigid continues her role as service cat, waking me from nightmares and purring me back to sleep and snuggling with me when I have a migraine until I can sleep.

I have an appointment for a second medical opinion by a neurologist of OWCP’s choosing on December 11th. ¬†This could end in three ways: 1. Return to work full time, no more benefits; 2. Stop work order pending retirement; or 3. Continue on as is. ¬†I doubt they can kick me off benefits since my seizure disorder was recently diagnosed and is not even close to be controlled. ¬†I’m hoping for option 2; send me home to wait for OPM to act on retirement. ¬†This will continue my pay and benefits. However, it is their doctor. ¬†They pay him. ¬†I have a hard time believing it will be a neutral exam.

TBI gifted me in ways I haven’t mentioned before. ¬†I now have anxiety, almost all the time I am away from my house. ¬†I function decently in familiar places and following a routine. ¬†I don’t go anywhere I don’t know without a friend. ¬†The anxiety at work is unhinged. ¬†I feel physically ill entering the building and have to really focus not to emotionally melt down. ¬†Another problem can actually be amusing, if not annoying, in some situations. ¬†My life has a soundtrack playing in my head quite often. ¬†I’m sure people are familiar with “ear worms.” ¬†Everyone gets a song “stuck in their head” at
some point. For me, it is daily and fairly constant. Last week, I was treated by having the theme song to “Adam 12″ playing in my head constantly. Sometimes, I can change the channel and replace one song with another. Sadly, getting my mind stuck in a rut also applies to other situations. I get an idea in my head and I obsess over it. Right now, it’s the situation around my retirement.

So, here I am, awake at 0215 trying to stop worrying.

No matter what happens, I’ll be ok?

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