Traversing the 4th of July

Before the wreck, sounds did not bother me. Bright lights did not bother me. Not much of anything like that did…..

However, that all changed after the wreck thanks to a Brain Injury. That invisible injury altered so much of my life and how I perceived life. It still does.

I still find myself procrastinating doing things that have those loud sounds and bright or flashing lights attached to it. Often times I either avoid those activities altogether or power through knowing full well the cost it will take on my body afterwards….yet willing to pay the cost for the experience.

This is the first year since the wreck (5 total years now) I was able to actually look at and hear fireworks without my heart racing a thousand miles an hour with each boom, without having panic hang with me all night, without feeling like I was having a heart attack with each pop, and without wanting to puke from the brightness.

I had a slight body jolt with a few of them….but nothing like before. I slept HARD afterwards and a bit drained today…yet holding steady.

Sudden loud unexpected noises are a good way to light that panic/anger/anxiety button. Knowing the sound is coming makes it more manageable for sure. Being mindful and aware of my body and setting boundaries for myself is becoming more natural as time passes.

Honoring Memorial Day

Thankyouveterans

 

Memorial Day is a federal holiday in the United States Memorial Day is a solemn event, not a happy day or time. It’s a time to reverently consider the idea of sacrifice, to preserve the memories of those who died while serving in the United States Armed Forces, and to give thanks that they did so. 

The holiday is observed on the last Monday of May.  Memorial Day is a  sacred time as we remember our fallen warriors by speaking about them, holding memorial ceremonies, visiting cemeteries, holding family gatherings,  lending a helping hand to our living veterans, and participating in parades honoring those veterans.  It is customary on Memorial Day to fly the flag at half staff until noon, and then raise it to the top of the staff until sunset

Taps, the 24-note bugle call, is played at all military funerals and memorial services. Originally known as Decoration Day, it originated in the years following the Civil War and became an official federal holiday in 1971. .

It is important for Americans to take time to remember the sacrifices that bought their freedom. Here are some ideas on how to celebrate this important American holiday:

  • Send a note of thanks to Veterans you know.
  • Donate to veteran charities or volunteer your time at a Veteran’s home or charity.
  • If you know someone who has lost a loved one in battle, offer to help with a household project or help meet a special need they have.
  • Visit a local cemetery and place flags or flowers on the graves of fallen soldiers.
  • Even if you don’t have any veterans in your family to remember and speak of, you can always learn of the lives of other past service members through memorials and museums.
  • Another way is to incorporate the colors of the flag into your wardrobe, and display a Memorial Day pin. It’s generally considered a poor choice to wear clothing with the American flag printed directly on it; the flag is meant to be flown, not worn; finding clothing that includes the essential colors and patterns is a great way to mark the occasion.
  • Fly the American flag at half-staff until noon.
  • Participate in the National Moment of Remembrance at 3:00 pm. Pause and think upon the meaning of Memorial Day.
  • Send a care package to deployed service members.

Unofficially,  Memorial Day marks the beginning of the summer season.

Reflection of Motherhood

reflectionofmotherhood

Being a mother has been the best job in the world to me.  I always wanted to be a mother…from a very young age.  I felt capable, ready, and committed to being the best mom possible.  I wanted to be, and often was, the supermom, who could seemingly do a little bit of everything at a moment’s notice.  Then the wreck I was in changed all of that forever.  It shook my confidence.  It shook how I existed from one breath to the next; it shook every aspect of my life as a daughter, sister, wife and as a mother.

I have been a mother to foster children, stepchildren and biological children. I have been a mother figure to kids that never even lived with me. I  have been mothering to kids I came into contact with. I am convinced that how we care for, love, and embrace our children is exactly what makes us a mother, no matter how those children came into our lives, or became our own.

After the polytrauma and traumatic brain injury, I was no longer the mother my children knew before that day.  I was different.  I didn’t even know who I was. I was injured, I was in pain and I was unavailable emotionally, mentally, and physically.  I have heard stories about things I don’t remember – things I have allegedly said or done, most humorous, some horrible and embarrassing.  I apparently was a horrible person sometimes, especially in the first year after the wreck.  This was just bad mojo – cognitive changes, personality changes, and enormous pain from all my injuries.  I was often in so much pain I couldn’t function at all.  I was useless to everyone around me.  I definitely couldn’t make effective and meaningful decisions.   I couldn’t remember one day to the next or who had visited me, or what was said by whom.  I couldn’t muster taking care of anyone else, let alone myself.

My outlook on everything, while hopeful, was also littered with confusion and a myriad of emotions I didn’t seem to be able to control.   I noticed my mood was worse as the pain increased and for a long time just breathing or moving caused me pain.  I slept A LOT.  I couldn’t even force myself to stay awake.  I wasn’t the mother I had always been.  I was the mother fighting for life and fighting to come back to my family.  I was a mother still inside, still to my children, still to the world who knew me as their mother.  Yet I wasn’t at the same time.

My own mother took care of me.  She bathed me, clothed me, fed me.  My mother was there for my first steps as an infant and again as an adult as I learned to walk all over again.  My mother was my caregiver.  She didn’t have time to grieve.  She became the needed mother role for my children.  My husband and my mom were my pillars of care and support.  I was fortunate to have such amazing support.  Not everyone has a supportive system like that.  Some days my mom was more of a mother to her grandchildren for a period of time than I was….than I was capable of being.  I don’t like to dwell on that.  I don’t like that this was her reality – however I am enormously grateful.

I realize that being a mother is an enormously different experience for every woman who ventures down that path, and the experience is different with each of our children as well.  I am acutely aware of this.  Not every woman wants or enjoys being a mother.  Some mothers are not mothering at all.  Some women abuse or neglect their children.  Some women wish they never had children. Some are the opposite however and actively involved, readily available, completely vested, and doting.

My job as a mother is constant.  Being a mother is a full time endeavor and is totally consuming, no matter how old your children are, or how many you have.  No matter how old, how broken, or how healed you are as that mother.  A mother sometimes  worries for her children.  A good mother desires to see her children succeed.  It is frustrating and depressing when you go from full time, full speed ahead in parenting and life to an abrupt halt due to an injury that doesn’t even allow you to participate part time…if at all on some days.

Learning to embrace the new normal after catastrophic injuries is no easy feat.  Most days it seemed impossible and almost always overwhelming.  You would be amazed at how much the love of being a mother motivated me to give my best effort each day.  Some days, literally the only reason I found myself able to face the day was because I knew my children needed me, were counting on me, and were hoping for my recovery.  So in that regard, the kids helped save my life.  They helped me stay motivated just by existing.

Some days are challenging still, though much better than in those first few years.  Did you know that any women who are mothers take on additional caregiving for loved ones with disabilities or long-term care needs, beyond the work that we normally do to raise children or to fight through their own rehabilitation?  This became the case for me when my mom developed encephalopathy and a resulting ABI (an acquired brain injury) secondary to being diagnosed with Anca Vasculitis. I then also absorbed some of the role as her caregiver.  Signing documents in the hospital for procedures and care she needed when she was unable to do so for herself.  I took on the role of caregiver and I wasn’t even ready to be back in my full role as a mother to my own children.  That was a series of difficult transitions……for all of us. Yet we persevered.  Survival was inevitable.

Did you know that the CDC reports that the average life expectancy for women is 81? Living to the age of 81 is nearly four years more than that of men. In fact, many women outlive their husbands. Some even outlive their retirement. Even those on disability. Older, single women face significant challenges in managing their own long-term care needs as well.  If you add the extra job of being a mother to all that mix – you learn a lot very fast and you shoulder a LOT of responsibilities.

To be the best mom possible, I realized it was imperative for me to not just let go and let God;  but to let go and let others.  Let others help me, let others give rides to my kids, help my kids, help my family.  Let my husband take on those responsibilities I had as a mom, that I sometimes didn’t have the energy to be present for.

I realized that being a supermom didn’t mean I had to do it all.  Being a supermom meant I just had to be here to the best of my ability, to love my kids to the utmost, to voice my tolerances and intolerances in a different way.  Being a supermom meant giving myself the freedom to recover at my own pace, and forgiving myself for not being who I used to be.  Being a supermom meant being the best me I could be in each moment.

I still love being a mom.  I still love hearing the laughter of my children.  I love watching them sleep, hearing them play, and watching them grow.  I still value being involved, present, all while being respectful of my limitations.

I am still a supermom.  I just do it differently. Do you know a mom who is recovering from an injury….who is a caregiver….who is employed…..who is unemployed….who is on disability…..has her own children….or is a mother figure to the children of others….offer to help her out.  Can you think of that mom out there who is struggling to do her best? ….Offer to shoulder some of her responsibilities.  Appreciate her.  Celebrate her as an invaluable contribution to the family as a whole.   After all, that is what she is – invaluable.

Is that mother you?  Ask for help.  Love yourself.  Forgive yourself for not doing or being all that you envision all at once, or still. Get involved in a support group, counseling, whatever it takes to help you face each new day and each new moment.  You are after all….if you love being a mom….if you are go getter, a survivor, a brave face in a sea of thousands.  If you are a mother giving her best effort….even if you aren’t able to do everything….you are still a super mom.

Happy Mother’s Day

~Caren Robinson – May 2019

 

Below are some articles and links I thought would be helpful to all those who have mothers, are mothers, are children of a mother with special needs, or are caregivers for mothers…..

Parenting After Brain Injury – A Guide

https://www.headway.org.uk/media/3998/parenting-after-brain-injury-e-booklet.pdf

How Motherhood Makes You Smarter

https://www.smithsonianmag.com/innovation/how-motherhood-makes-you-smarter-55995649/

The effect of parental traumatic brain injury on parenting and child behavior.

https://www.ncbi.nlm.nih.gov/pubmed/9885318

 

When Parents Have Brain Injuries: Helping Children Cope

http://www.muhcpatienteducation.ca/DATA/GUIDE/532_en~v~when-parents-have-head-injuries-helping-children-cope.pdf

 

Adult functioning of mothers with traumatic brain injury at high risk of child abuse: a pilot study.

https://www.ncbi.nlm.nih.gov/pubmed/24401827

Children with Traumatic Brain Injury: Associations Between Parenting and Social Adjustment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4695398/

Children of a parent with brain injury

https://www.braininjury-explanation.com/life-with-brain-injury/consequences-for-the-family/children-of-a-parent-with-brain-injury

Finding My Mom Again After Her Brain Injury

https://www.scarymommy.com/finding-my-mom-again-after-brain-injury/

 

TBI Ten Years Later: A Mother’s Story Continues

https://www.brainline.org/story/tbi-ten-years-later-mothers-story-continues

This Mother’s Day, know the symptoms of concussion

http://theconversation.com/this-mothers-day-know-the-symptoms-of-concussion-96101

 

How Treating People With Brain Injuries Helped Me Forgive My Mother

https://narratively.com/how-treating-people-with-brain-injuries-helped-me-forgive-my-mother/

Bringing Awareness

Check out @PUpieces’s Tweet: https://twitter.com/PUpieces/status/1106199497414184961?s=09

My story published in “Picking Up The Pieces” Publication. Thankful for opportunity to spread awareness during Brain Injury Awareness Month.

https://pickinguppieces.net/second-chance-on-life/

Improve Awareness and Understanding of Brain Injury

Brain Injury Facts and Statistics – Awareness

New Story Posted

laternever

Angie and Jesse were a couple with 3 children. Then the unthinkable happened….

In honor of Brain Injury Awareness Month. Check out the story of young love and how it changes in an instant.

https://hopetbi.com/your-stories/the-dearly-departed/jesse-buchanan-dearly-departed/

#ChangeYourMind #BrainInjuryAwarenessMonth  #hope_tbi

 

 

10 Great Ideas for your Brain Injured Valentine

Valentine’s Day has become very commercialized over the years.  There seems to be a lot of social pressure to purchase things for those that you love.  Pressure to “go out and do something together”.  Pressure to “prove” your love with the largest gift, card, or elaborate reservation.  Sometime’s though, for some folks, Valentine’s day is just another day, not different from any other.

However, if you are one of the folks who celebrates this day; one of the ones who gets all twitterpated when you think of what you can do for that special someone or group then this is an exciting day for you. There are things you can do though, to do something special without all the “fuss”. Your brain injury survivor you may or may not be interested in the social congestion and crowds that can fill the stores, restaurants, and traffic.  This holiday can also bring a sense of loneliness, isolation, depression, and melancholy for those who are unable to participate the way they would like to, or with who they would like to.  So sometimes just remembering someone can lift their spirits.

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Valentine’s Day can be a magical time for couples who do celebrate this day, or even those we care deeply about – even those who we are not in a romantic relationship with.  This day has become a day that we are reminded to celebrate love, passion, and belonging.

Valentine’s Day is the perfect opportunity for you to take the time to show that brain survivor person you know some affection, friendliness, and that you care for and value who they are as a person…..even if they are now a different person than they used to be.

If you are a solo flyer and have noone to celebrate, consider celebrating yourself and loving yourself for all that you are, all that you have been, and all that you are becoming.  Self care is just as important, if not moreso than the care we give someone else.

Some economical ideas that won’t break the bank and add a personal touch to the day are as follows:

  1. Write a note or “Valentine” with all the accomplishments, positive statements, love you feel, emotions that are positive, and progress your survivor has experienced in the last year.  Deliver to them and consider reading it to them out loud if they have trouble with reading or comprehending written words.  Otherwise, you can present it in any form you choose.  Be careful not to use perfumes or scents on your letter if your survivor is sensitive to these.
  2. Create a picture collage for your “Valentine” as a slideshow, powerpoint, or other program that they can open a file on and play, or that you have burned to a disc.
  3. Create a Coupon book using construction paper, stickers, scrapbook materials, etc.  Spare no creativity here.  This is only limited by your imagination.  Maybe some coupons could be “help make a meal”, “drive you to an appointment”, “write a letter to a provider for you”,  “help you for a couple of hours with household chores”, “watch the kids overnight so you can get uninterupted rest”……you get the idea… Use gel pens, markers, crayons, or other art supplies to jazz it up a bit.
  4. Make a positive quote booklet.  Type or write up motivational quotes and put them in a binder or booklet form and present to your “Valentine” to give them something to refer to whenever they need a pick-me-up.
  5. Provide a delicious treat.  Whether store bought, or homemade, sometimes the personal touch of a box of chocolate, candy hearts with little messages on them, a home cooked meal they didn’t have to make, a plate of warm cookies, or something along those lines can be very special and send a loud message that you care about the little things –  especially if you have considered their dietary restrictions or food allergies (if they have any).
  6. Make a “treasure box of love” – you can include coloring books, crayons, word search, brain activity card games, board games, fidget spinners, sensory objects, puzzles, or things that you know they are personally interested in.  You don’t have to go crazy here.  This can be one thing or a lot of things.  The thought is what counts the most on this one.
  7. Set aside personal time for just you and your partner.  This can be 5 minutes, 30 minutes or an hour.  Whatever their tolerance is for this.  Hold hands, snuggle, or just sharing space together without outside interference can be a welcome experience.
  8. Create an Aromatherapy collection for your survivor if various aromas are a positive experience for them.  This can include incense, candles, tinctures, essential oils, melting wax and warmer, etc.
  9. Run a bath with bubbles, essential oils, or other things your “Valentine” may want to soak in.  Help them into the bath, help wash their back, or perhaps play them some soft music while they relax.
  10. Write a poem or a song for your “Valentine”.  Sing to them or make them a video where you are signing, reading them a poem, or speech with them in mind.

Valentine’s Day is rich with historical developments over the years.  There is really no wrong way to celebrate it.  It’s also okay if you don’t celebrate it.  However, for those that do – make it fun, make it safe, and think outside the box when working to do something special for your brain injured “Valentine”.

ValentinesDay

Web Site Updates

Happy 2019.

You may notice some changes happening to our Website.  We are pleased to announce new pages coming to fruition and current pages receiving updates.  So even if you have read a page before, check back for continual updates every once in a while.  Also, you can check the Blog for announcements of updates as well.

Our current page updates for 2019 thus far,  include:

SOCIAL OUTREACH

HOW YOU CAN HELP

FREQUENTLY ASKED QUESTIONS

ABOUT ME AFTER THE WRECK

TBI DIAGNOSTICS

SUPPORT GROUPS, SITES, and BOOKS

HOPE TBI AWARENESS

We welcome information, articles, stories, and topic ideas for our website.  We also welcome guest authors for a Blog post as well.

You can reach us at our CONTACT PAGE for more information. Please also let us know of any broken links you may come across.  All work on this website and blog is done as a gift of love and is provided free of charge to the public domain.

Website+Update+02

The Elephant In The Room

Elephant In The Room:

~ An English-language metaphorical idiom for an obvious problem. difficult situation/decision, or risk no one wants to discuss, or a condition no one wants to challenge.  An unpleasant experience. question, problem, solution, or controversial issue which is obvious to everyone who knows about the issue, but which is deliberately ignored because to do otherwise would cause great embarrassment, sadness, arguments, or is simply taboo. ~

orangeelephant

What is YOUR “elephant in the room”?   

Is it an invisible injury or illness? Have you been diagnosed with a Traumatic Brain Injury?

Is it a Polytrauma you are recovering from?

Is it chronic pain?

Is it Survivor guilt?

Is it lack of sexual libido or change in your sexuality since your injury/illness?

Is it your inability to describe to others what you are going through or have gone through?

Is it the coping skills that you must use and choose to tell noone about?

Is it your bravery, your sheepishness, your courage, your fears?

Is it pride in how much you have acccomplished?  How far you have come?

Is it depression, anxiety, or disappointment in your lack of progress?

Is it lack of confidence?  Is it overthinking and overconfidence?

Is it your inability to return to the same type of work you used to do?

Is it your desire to return to work, yet unsure of what that picture looks like for you?

Is it caregiver burnout?

Is it provider fatigue?

Is it a source of deep grief, sense of loss, or mourning?

Is it something that you have put in your past and no longer wish to speak about? 

Is it something you want to speak about, yet others are ready to move on and not speak about it?

Talking about the things that are bothering you can help clarify them and put them in perspective. In never addressing the “elephant in the room” a general uneasiness, sense of frustration, stagnation, loneliness, and untrustworthy environment can breed a life of havoc and confusion. Break your silence and be blunt in a productive manner.  Perhaps even seeking out a therapist to assist you with working through some of the adjustments would be advantageous for you.

Avoiding an issue causes more harm than good….always. When discussing an issue, it is imperative to remain as calm as possible.  Using anger or yelling to communicate can absolutely make things less constructive – especially if you are having trouble finding the words to say and the best way to deliver them.  Being objective can be super tough.  However, it can be helpful if you make a list of facts.  Now, when I say facts.  I am not speaking about how you feel, how you think, or what your assumptions are.  I am talking about facts that you can prove with empirical evidence, historical evidence, and a paper trail.

elephantagitationKeep in mind when talking about that “elephant in the room” that sometimes the very people who need to hear the topic being talked about are the least receptive to hearing it.  That often means that person might even be you.  Being receptive to talk is important. It is equally as important to actively listen. Support from others that share the same or differing opinions about the issues you wish to speak about will make it not about you, but about the issue and how much it impacts others who have gone through the same thing, or are currently experiencing the same challenges.  Support groups (even if they are online) can be an amazing source of support, ideas, and encouragement.

A resolution or plan is something that is accomplished over time. Open communication without apathy,  fear, or hopelessness is an integral part of finding what works best for you. Keep an open mind and be willing to have multiple conversations about that “elephant in the room”.

Taking that challenge which is deliberately ignored and opening up a dialogue about it, changing whatever it is that is holding you back from being your best self.  This is how to make progress, step outside your comfort zones, and switch an unspoken taboo topic into a healing process.

purple elephant

New Year Message To You

2019 Image

 

Those recovering from injuries or trauma are often mired by numerous appointments, sorting through providers who may or may not know how to deal with their injuries, symptoms, or chronic pain.

Those recovering, while blessed to have survived are also overwhelmed with new “normals”, new limitations, new or ongoing financial devastation since their injuries, and also new opportunities for growth. Those recovering have lost friends, colleagues, and family members who couldn’t “handle it”, “understand”, or who simply just kept moving on with their lives while the one recovering was caught in a time warp of change and foreign experiences.

You have been through a lot this year and I hope it ends with a smile on your face. I hope that happiness is able to fill your heart and life more often in the coming year. Love and time is a great healer. I encourage you to be gentle and kind to yourself and those who strive to help you out, no matter how small the acts of kindness you receive are.

Slow down a bit and work on not overthinking. Find time to rest your body and your mind. Healing comes with rest and time. Healing also comes from pushing forward and keeping the body and mind moving. The key is learning to set personal limits, boundaries, and pacing yourself.

Set a goal. It doesn’t matter if it is a small goal or a larger more challenging goal. Take small steps towards your goal. Each step is one step closer to achieving the end result, whatever that may be for you. Share yourself with others. 
Never give up HOPE and belief in the greater good. Allow yourself to see the light despite all of the darkness.

Someone, somewhere, is sitting in the shade today because someone planted a tree. Pay it forward by planting one small kindness at a time, and help cast the shadow of your fears and limitations behind you.

I wish you enough. Enough love. Enough pain relief. Enough progress. Enough happiness. Enough joy. Enough progress. Enough life. Enough of all that you need in the New Year.

Happy New Year!!!

Amazing-Happy-New-Year-Image

Patient Spotlight – The Scapula Institute

scapulaanatomy
What a normal scapula should look like when not fractured or damaged.

So I have been very fortunate to have survived many rare injuries from the wreck. My journey continues with a new life plan and growing gratitude.
 
I am also fortunate to have my patient story spotlight featured in the 2nd Volume of “The Scapula Institute’s Newsletter”

fractured scapula
Scapula before plated – dark areas in center of scapula are broken and or missing bone

 
Take a moment to read and share this with as many people as you can. The more we can bring awareness to Polytrauma and the amazing medical breakthrough outreach that the Scapula Institute does, the more lives can be impacted and saved.
 
Many thanks to Dr. Peter Cole and his trauma team for all of their efforts on the behalf of bettering the world one patient at a time.
 
 

platingribandscapulajune2016
View from Back – Right Side Plated

rearviewplatingjune2016
After Reconstructive Surgery of Ribs and Scapula

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Beautifully Broken

Sometimes feeling broken goes beyond the obvious physical fractures sustained by a physical injury.

Sometimes the scars that are left behind are not even visible to the eyes. Jagged streaks of struggle with each swell of effort and perseverance.

The only way to effectively deal with your past, your limitations, and experiences is to make a future out of it.

No matter if your scars are visible or invisible – have no shame – you are beautifully broken and worthy of healing and love.

Listen: https://t.co/0rFM3S3oSf

#hope_tbi #beautifullybroken

My Spouse As My Caregiver – Web Page Release

The spouse is often forgotten.  Their role as caregiver is not fully appreciated by those not experiencing it. It is easy for folks outside of the experience to forget Rick in all this too as he is healing along with me – he is BRAVE and the most amazing husband and father in the world.

Let’s give a shout out to our Caregivers, the warriors and the silent walking wounded.

Check it out on our newly added Web Page:

My Spouse As My Caregiver

Titanium Rib Plating Shortens Recovery

This is the same type of rip plating I had done when I had flail chest. It was a lifesaver for me.
 
Read more about my rib plating here Flail Chest and Rib Plating

A Heap of Sleep After Trauma

For the first several months after my TBI you couldn’t have paid me to stay awake.  I was always sleeping – in between bouts of pain of course.  However, I just could not seem to stay awake.  I would think to myself, “Stay awake Caren”.  Just couldn’t manage to do it, no matter how hard I tried.

2014hospitalI didn’t care where I was either.  Sitting in the wheelchair, at a doctor appointment, during therapy, on the toilet, in the shower, trying to read, while eating, while drinking, while talking, typing on my computer, home or away I was constantly falling asleep.

Not only was I sleeping 12 hours or more a day I was also 2014NeuroRehabembarking on several “mini naps”.  I attended 3 sleep studies in the first 18 months after the wreck.  I eventually was diagnosed with Hypersomnia vs Narcolepsy.  There was no history of Narcolepsy in my family or with me.   Finally it was determined that this Hypersomnia was a result of my TBI.  This was a fatigue so intense that simply waking up and having help getting dressed was enough activity to illicit another “nap”.

I would also sleep HARD.  This often scared my family. By that, I mean that my family would try to wake me up for medication times, or for meals, or appointments.  Sometimes they would call my name repeatedly, shake me, run a thumb up the bottom of my bare foot. Anything to get a response and I would soundly sleep through it all. Apparently, to hear them tell it.  I slept like I was dead, not even a flinch.  I lost the ability to hear alarms or get woken by one in the first 4 years. Once awake it would take a long time to get my head together, realize where I was, that I was okay, and what was going on in the moment. For the first couple of years I lost my ability to dream….or at least remember them.  This was odd as I used to dream in living color before the wreck and remember ALL my dreams.

Medical appointments were agony.  I was fatigued BEFORE I got there and getting out of the house took over an hour…on a good day.  The level of fatigue felt AFTER the appointments was like a heavy weighted straw sucking the life out of me.  I needed to sleep NOW or I knew I got grumpy fast.  Often times followed by a wall of tears.

October2014

 Keep in mind I still had numerous fractures as well for the first two years that went unhealed, so I was also in pain ALL THE TIME.  I was not a happy camper.  Trying to be positive took a lionshare of my energy as well. Add on to this multiple surgeries and recovery time just from that, and the clock on my recovery started all over again after each surgery.

Sometimes I would be talking to someone and it was daylight outside, I was propped up in my hospital bed at home and suddenly I would wake up, and it was dark outside.  I was unaware I had even fallen asleep in the middle of a conversation and been asleep for hours. I would often feel confused, guilty for sleeping so much, and still exhausted.

From home I tried to keep up with emails, phone calls, communications with the schools, etc like I did before the wreck.  Um, yeah…I failed miserably at these attempts.  I would forget what I was doing, who I was talking to, what I was typing and it was a mess.  I am amazed that most of all those same people still talk to me.  I was so flighty.

Every emotional upheaval caused fatigue.  I can tell you that there were a LOT of emotional experiences I was constantly wading through.  I noticed I couldn’t read a book!  This was upsetting as I used to be an AVID READER.  I couldn’t do word searches.  I kept trying, however it would make me puke.  I could read information on the computer in small doses, often falling asleep while on it.  I was in a world I did not recognize.  Even the lights on the ceiling in the store or at the hospital made me feel fatigued.  My eyes burned from the lights. Even at home the lights bothered me.  I spent a lot of time with a neck pillow covering my eyes or my head covered or buried in a blanket in a low lit room. 2014home If the room was dark…even better.  I couldn’t even listen to the TV in the first few months.  It took almost a full year before I could watch a one hour television show without feeling overwhelmed.  I remember there was just to much movement on the shows.  There was too much to look at and it made me nauseous.  So the family spent many a movie night with me sequestered to my hospital bed drinking up the dark quiet and solitude.  I was also dealing with horrendous headaches, dizziness, and room spinning feeling.  On top of that the room would slant by the end of the day.  I always felt like everything was “crooked”.

I remember some frequent moments I would stare at words unable to read them. I have always loved words, their definitions, and studying language.  My favorite board game USED TO BE Scrabble.  I even won spelling bees when in school.  So for me not to have a grasp of language and words has been the biggest loss for me.  It would take me a while to figure out what the words were, what they meant.  It helped to have my family read things to me, especially medical releases – where there were LOTS of words. I would hold a pen and not remember how to write.  In fact, where I ALWAYS used to write in cursive before the wreck, I now had hen scratch printing.  To this day I still print now.  It’s bizarre.  I will say it has improved quite a bit in the last 4.5 years though.  I had trouble getting the words in my mind out of my mouth, while at the same time trouble finding the right word to describe what I was talking about.  I did a LOT of substituting words that meant other things.  I still do that, yet not nearly as much.

I have always been a perfectionist my whole life.  I would say that this intensified after the wreck, and yet I was too fatigued to follow through on anything.  This was continually frustrating. I was upset about forgetting so much. I would forget what I was saying right in the middle of saying it.  I couldn’t track my thoughts and I kept making mistakes.  I was introduced to writing everything down in a notebook from a speech therapist in NeuroRehab.  This was and has been a lifesaver to me.  The only issue thought that still kind of plays into a challenge is I forget I wrote something down.  This is often comical now to me, though I did not used to handle it lightly at all.  Sometimes still, I will go back and read what I wrote just to refresh my memory on things.  I have gotten better about using the notebooks less and less.  However, anytime I try to go without them completely it is generally self-sabatoging.

After a while I suddenly developed insomnia.  What the heck.  I was either a hypersomniac and sleeping all the time or not sleeping for a day or two because my mind would not rest.  I would lay there with my eyes closed and nothing…that was more towards the second year though.  Around this time I also started transitioning from the hospital bed back to the regular bed with my husband a little at a time.  That was a pretty special piece in the recovery process for us both.

Trying to push through the ongoing fatigue, feeling of being drained, or having an anxiety flare would cause a certain guaranteed meltdown if I pushed myself to try and overcome those moments.  Sometimes of epic proportions. I have gotten better about managing this though. tiredbirdI have learned that when my brain and my body is done, they are done NOW and I need to respect that. I have to plan way in advance and conserve energy, days in advance of an event, trip, or day of appointments.  When it is a busy week, I spend a lot of days playing catch up on my energy.  This often involves a lot of sleeping still, often coupled by crazy random muscle spasms.

My sleep has improved though in the last 5 years.  I still have bouts of insomnia, but not nearly as much.  My sleep has actually mostly normalized. I get an average of 3 -10 hours, with the most common being around 6 hours. Still naps here and there, though not sleeping 20 hours a day anymore.

I actually attribute a lot of that to having gotten prism glasses, vision therapy, and just a lot of time for my brain and body to heal up some and reroute itself.  I have done a lot of brain games, a lot of research, and acquired care that has helped me get to the level I am at today;  helps me continue to manage my pain most of the time, and I am now able to spend some bursts of quality time on some of the things that add value to my life.

I haven’t been able to combat the fatigue yet.  However, I have learned quite a few coping mechanisms that help me be more active and involved in most of the things in my life now.  I have a lot of strategies in place that I utilize every day.  Some exciting developments as well.  This past Summer and early Fall, I started being able to hear some of my alarms again.  I cannot tell you how excited this made me.  I don’t always hear them still, especially if I am super duper exhausted and pushed myself too far.  However, I will take sometimes over not at all.

I have learned more and more as each day passes that time is a completely different animal than energy. Why is it that I don’t seem to be able to accomplish anything like I used to in a day, even though I have all this time given to me?  What I did not have, and still struggle with, is having energy, especially energy related to my cognitive base.  So you can have all the time in the world,  if you have no energy to go with it…not much is getting done.

improvement

So I pace myself, plan, plan, plan and gently glide outside of my comfort zones to live up to my desire to help others in the best ways that I can, for as long as I can in a single day.

Then, after all is said and done, I haul myself up to my bedroom, collapse into a well deserved exhausted heap…..and sleep.

 

mentallyexhausted

 

The Mom Factor

I had a memory come to me of a provider asking me if I felt I could handle my children at home. If I felt capable of going home with a house full of children with all the needs that they had. If I felt ready to go home?

This was at some point after the wreck.  I don’t have any concept of the timing of this question.  I also don’t have any concept of who the provider was that asked it. With the memory of those questions though, came the memory of my feeling about the questions.  My instant thought was “Hell no I wasn’t capable, couldn’t they see me?”….my emotion was FEAR and PANIC.  The actual words that came out of my mouth I don’t recall. At the time we had 6 kids in our house and I couldn’t wrap my mind around how I was going to be a mom to any of them anymore.  I had no concept that it was actually 5 kids at home because one of them had left for college the week after the wreck.  It saddens me that I don’t remember any of this.

I do know that those two questions made me afraid that if they knew how messed up I felt in my head, or how much I was disabled, that my children would be taken away from me and I would be deemed as unfit.  I could not fully understand what was going on with me or what had happened to me. I couldn’t think how the kids were being taken care of while I laid there fighting for my life. I was afraid I was going to die and no one was telling me that.  I wasn’t ready to die yet.  I felt death pulling me into that dark abyss though, and to be transparent, often I was very tempted to allow the warm embrace of death to consume me if it meant I could shed that pain that rippled through me with every movement and breath.  Yet the thought of my children, my husband, my mom….they kept me here.  They kept me fighting for life. Despite the pain.  Despite me being consciously unaware of their existence.

I could feel my broken body and I could not do even simple tasks without pain.

Hell, I couldn’t even stay awake long enough to string one thought to another.  I couldn’t  take a simple breath without pain. I could not rationalize that I had a husband who could take care of the kids, or how much time had passed of this already being done for several weeks at that point, which would extend into 3 months.  I couldn’t rationalize that at the time, I had relatives that could help out (or that the burden of my care would change these dynamics as well). I couldn’t rationalize that I wasn’t well enough or even ready to be sent home yet, or what being sent home would have looked like to me or my family. I couldn’t organize my thoughts, my notes, my emotions.  All I knew was that I was seriously screwed up.  The wall of pain that coursed through my body was beyond unbearable.  My husband said that the hospital spoke to him about putting me into a drug induced coma so I wasn’t suffering the pain they were unable to manage for me.  My husband said he talked to me and I did not want that.  He honored that.  His fear was also that I would not wake back up if they did that.  He at least could hear me talk.  Even though I have no memories of those conversations or that I was alive at all.  I do remember the fear of not being able to walk, sit up, or do things for myself. We didn’t know at the time that I wasn’t really lucid anyway.  Brain Injury will do that.  Trauma will do that.  Polytrauma will do that. I don’t know what the best decision would have been.  I am still alive now, so there is really no way to know.

I knew I wasn’t thinking correctly. Something was off.  I felt like I was in a haze.  I felt like I was in a mental vortex and at times felt I had to pretend to be okay or better than I actually was, just so I didn’t lose the kids.  pan memoryI wish someone would have told me that they were asking me those questions to see what help I needed at home; to see what in home services needed to be provided; to decide if I should have been kept longer in the hospital or not.  I wish someone would have told me that I was not in danger of losing my children to child protective services just because I could not presently care for myself or them.  This would have alleved that fear. I wish someone would have told me that the kids are safe with my husband and had been for several weeks now.  Maybe they didn’t tell me because it was obvious to them.  I on the other hand, couldn’t figure it out. Every waking moment was a confused and painful state of existence.

While I was laying there, I didn’t know how to answer those questions they asked.  I was seemingly focused on my healing where I was at.  Then again, maybe they did inform me of all those things, and I just don’t remember.

My thoughts were, how could I take care of my children when I couldn’t even care for myself at that time?  How could I function when in so much pain, that even breathing was painful?  How could I feed them, take them to school, how could I even tolerate their company when all I wanted was silence and darkness all around me.  The lights pierced my eyes like nails being driven into my flesh.  The noise around me was amplified as if every small sound was being put through a large speaker.

The sound of shoes walking in the hall was enough to make me vomit….literally. How could I be a mom when I couldn’t even wipe of clean myself?  How could I say I didn’t want to go home? How could I say I didn’t want to be a burden?  How could I say that I was afraid I was going to die if I was left in that hospital for another day?

Traumatic+pain+vs+medical+pain

How could I say that I was afraid if I went home then I would be going home to die?  How could I answer anything logically when logic ceased to exist?

The inner drive to live, to exist, to be more than what I was in that moment I believe is what kept me here.  The support and love of my family being with me each day and calling me back to reality kept me here.  I believe, that even though I did not build memories to remember their presence, having their presence kept me grounded to life.  This helped me fight through the pain, hold on to possibilities.  Their determination for me and upheaval in their lives allowed me to eventually heal and begin to flourish in mine.

Those questions flooding my memory…..they were unfair to me.   I was not in a mental or physical state to answer them authentically.  I had no ability to be rational or process thoughts in the way that was necessary.  How was my husband not given those questions?  How could I make such an impactful decision being as broken as I was?

I don’t recall if I ever talked about this with anyone. However, throughout various parts of my recovery, I fought against the part of my thoughts that just wanted the pain to end, the medical appointments to end, the therapies to end, the ultra slow progress to just stop and the thoughts that seduced me to see death as a much more favorable option, by any means necessary. shadowofselfAt my core, I had always been against suicide. My FAITH would not allow me to cross that line.  Though I did tiptoe on that line for quite some time.  I did not want to go that route, even though I entertained different ways I could die that would hurt my family the least.  None of them seemed possible. What if I wasn’t successful?  What if I messed it up?  What if they thought I didn’t want them or love them?  What did I do to deserve this?  What did they do to deserve this? What if they don’t love me any more now that I am all broken?  What if I live and I am always broken?  What is the point in fighting?  What is the point in enduring?  How much am I really supposed to take after all?  Will I ever walk again?  If I don’t what will that mean to me? If I do, what will that mean to me?  Where can I run when I can’t even sit up by myself?  The thoughts were torturous.

What do you answer about being able to go home and if you are capable of taking care of your children when you are going through all that in your body and in your head?  Then add on top of it, the inability to get the words from my head to match what came out of my mouth or onto paper.  I used to be so good at this….*looking at my hands* …what’s wrong with me?  Why does my body continue to betray me?

embrace

In the end though, here we are nearly 5 years later after the wreck.  I pushed through all that.  I gave up focusing on those dark thoughts (though they still knock at times) and forced myself to focus on surviving, enduring, living.  I focused on the positive mantras taped to my hospital walls by my family.  I focused on the word that was hanging in my direct line of sight each time I opened my eyes – placed there by my mom….. HOPE. My main focus, drive, and reason for moving forward.  I embraced and embodied it and never gave up.

The reality is that I am still adjusting to my new normals. I am still getting used to being an active mom again.  All the responsibilities, the time, the effort, the deep sorrows, the sweet joyful highs of being a mom they either speed or slow a person’s recovery.  They are a continual work in progress.  Sometimes though, time seems to stop when I have a pain flare or just cannot get my mind to work like I want it to, when I want it to. I am then reminded that I can never go back to who I was before the wreck.

She doesn’t exist anymore.  She died at the scene of that wreck. However, the woman that lived and got to be a mom still….she is filled with HOPE, gratitude, and sees the possibility and a reason to thrive in each step, hug, kiss, and smile of her children.

So those questions.  Can I handle my children at home?

Some days still it’s  a resounding yes and some days it’s a deafening no.  As time passes the yes days become stronger than the no days.  However, even the no days are quietly whispered yes days…..as being a mom is the greatest thing in the world….broken or not.  Sometimes, in those first few years after the wreck, being a mom and knowing they needed me to show them how to overcome, how to never give up, how to struggle and survive….this is what drove me to make my appointments, therapies, and helped me out of bed, out of my room, and out of the house.  If I were being introspective, it drives me still.  I want them to be survivors, not victims of circumstances.  I want them to find their strength in my example.  I want them to thrive.

Was I ready to go home?  Absolutely not.  That was an unfair question to me from the start.  I was not even with it enough to consent to anything.  Let alone my release. That was a decision that should have been made by my medical condition at the time, which I was unable to conceptualize, understand, rationalize, or make any conscientious or informed decision about. I was sent home too early.  This was an enormous burden to my family that created a domino affect of challenges that we still feel the affects of to this day…..especially financially.

However, I am grateful to have had the opportunity to heal in a familiar environment.  This part I believe was an important transitional piece to my recovery.  I still have quite a few things I struggle with cognitively, orthopedically, and other areas.

The kids are forgiving and mostly tolerant.   They are grateful I am here.  They are adjusting as well, though not without bumps in the road,  to my new normal which in essence have become their new normal too.   When it comes down to it, that inherent need to carry life, to give life, to impact a growing thriving family is still part of my reality….despite the traumas.  Every day I am thankful that when we factor in everything that has happened and how things have unfolded, changed, or are different….I sill have the contribution of the Mom Factor that impacts me the most.

Suicide Awareness Week and Month

September is suicide prevention awareness month.

Monday, September 10, 2018 is suicide prevention awareness day.

September 9th-15th, 2018 is suicide prevention awareness week.

If someone talks to you about suicide or harming themselves or if they open up to you about how they feel, listen. Listening to and acknowledging someone can save a life.

Let’s work towards ending the stigma of mental health and suicide. Instead if saying someoneone committed suicide say they died of suicide or they died of depression.

People commit crimes, suicide isnt a crime, it’s the last symptom of depression.

Never Say These To A Caregiver

How to Survive as a Primary Caregiver Word Cloud Concept Text Background

Cindy Laverty, caregiver coach, radio talk show host, and author of, “Caregiving: Eldercare Made Clear and Simple,” offers examples of phrases that can leave caregivers thinking, “Did she really just say that?”

11 Things to not say:

1. “Why are you having such a hard time being a caregiver?” Usually voiced by someone who has never been a caregiver for a loved one, this question can be very difficult for a caregiver to hear. As Laverty points out, it effectively takes their role of providing care for a loved one, and diminishes it.

2. “Gosh…we haven’t seen you in such a long time. Why don’t you get out more?” Though it probably comes from a place of love, Laverty points out that this can be an unproductive way to express concern for a friend or family member who is a caregiver. “The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it,” she says.

3. “You look really tired. Are you making sure to take care of yourself?”Caregivers generally have a good reason for looking tired and haggard—because they are. “The biggest issue for caregivers is that they tend to sacrifice personal care—it’s the first thing that goes,” Laverty says. Caregivers look tired because they are not getting enough sleep, they spend their nights worrying and making sure their loved one doesn’t wander. But, that doesn’t mean that they appreciate having that fact pointed out to them.

4. “Caregiving seems like a burden. You shouldn’t have to sacrifice your life for your mother’s.” Caregiving is hard. That’s why so many people, both caregivers and non-caregivers alike, refer to it as a ‘burden.’ But, according to Laverty, when a friend or family member likens caregiving to a burden, what they’re really telling the caregiver is that they aren’t handling the situation properly and that this isn’t what they should be doing with their life. “Caregivers get into their role because they started out as loving, caring people trying to do the right thing,” she says.

5. “You need to get a ‘real’ life.” As the old saying goes, ‘you’re preaching to the choir.’ “Every caregiver understands that they need to get a life, have a plan, start making time for themselves,” Laverty says. But, telling a caregiver to ‘get a life’ is like telling them that what they’re doing now (caring for a loved one) doesn’t matter.

6. “Why don’t you just put you mother in a nursing home? It would be better for everyone.” Laverty says that comments like this can make a caregiver feel like they’re not doing a good job taking care of their loved one. The reality is, a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they’re offering good advice, when they might really just (unintentionally) be making a caregiver feel guilty.

7. “Why do you visit your dad so much? He doesn’t even know you.” If a caregiver is taking care of someone who has Alzheimer’s or another form of dementia (or brain injury) and they live in a nursing home, people may ask why they bother to visit someone who doesn’t even remember who they are. “People need human contact and love, or they will just shrivel up and die,” Laverty says, “Caregivers shouldn’t feel stupid for going to visit someone who doesn’t recognize them outwardly. As long as they know who their loved one is, that’s all that should matter.”

8. “Don’t feel guilty about…” When you’re a caregiver, “guilt just comes with the territory,” according to Laverty. Caregivers want to fix everything, to solve every problem, to ease every hurt, when the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.

9. “Let’s not talk about that. Let’s talk about something happy and fun.” When it comes to your average small talk scenario, caregivers generally don’t have a lot of “fun” things to contribute. Laverty says that people need to understand that people taking care of an elderly loved one need to talk about what’s going on. Friends and family members of caregivers should take the time to listen to what a caregiver has to say, no matter how ‘unpleasant,’ or ‘unhappy’ it is.

10. “You must be so relieved that it’s over.” When their loved one dies a caregiver is likely to be facing a bunch of mixed up emotions. Relief may be one of those feelings, but Laverty feels that it’s probably not productive to point this out to a person who has just lost a parent, spouse, or sibling. “If you diminish the event, you diminish the life and effort of the caregiver,” she says.

11. “When are you going to get over it (a death) and move on?” Grief is an individual process. For some people, processing the death of a loved one will take some time. This is particularly true of caregivers, who’ve poured a significant amount of time and energy into taking care of the person who has just passed.

Journey Into the Dark Side

I have been reflecting.  Reviewing old notes, writings, posts from the first 3 years after the wreck.  This was the epicenter of the hardest of my recovery.  Also the hardest was not feeling listened to by certain providers, especially during that first year; these providers who dismissed my pain, and who I was supposed to be trusting with my care.

I have decided to share some of those thoughts here….in my Blog.  This one was from 2014 just after the first of several surgeries to come:

The Journey Into the Dark Side

I remember.   I remember going to Spectrum Health Butterworth for surgery. I remember the surgeon calling me the night before after weeks of trying to get a hold of him to quash my fears and answer the questions, which to him were probably nonsense….but to me – were the words that drove my every waking breath and desire to understand what I was about to endure.

I needed his reassurance.  His candidness.  His time. His empathy.  His patience and his understanding.  I needed his apology, which I doubt I will ever hear. I remember feeling frustrated and angry that he told me to call any time with questions and then never responded to those questions, leaving me hanging perilously from day to day as if I were waiting for my death sentence.

Each moment, perhaps my last with each click of the clock which hung on the wall and taunted me so consistently with each passing hour, day, and night.  To him he was probably busy, and thought I should just TRUST him because he was one of the best if not the best surgeon in his specialty/field…..but how could I trust when that trust had been shattered like the pieces that lay inside my body still broken, painful, and damaged?

That trust was broken by him when he didn’t believe me and my complaints of pain, and yet I craved his answers and solace to help me get through the coming days and weeks before that daunting day when I would go beneath his knife.  I craved his humanity and his ownership for his role in my current state.  Yet that never came.

I felt trapped.  I knew I needed the procedure….this surgery.  How could I trust once the betrayal had been sown?  How could I believe that this was the right thing to do by this same man who cast me aside like a scrap piece of paper not worthy of his time until I got beneath the glaring lights of the cold and clinical Operating Room…..where I saw him momentarily.

How could I in the face of adversity and enormously high risk of dying on the operating table….TRUST?

I took a break, several in fact, and pretended like everything was okay, for my family’s sake.  I don’t know how I made it through other than by faith, the driving and enormous desire for relief of the growing pain in my right side (where the ribs never healed) that never went away; and the increased loss of strength and use in my right arm (most likely from forcing myself through therapy for 12 weeks and putting forth my BEST EFFORT with tears flowing like endless waterfalls as I forced myself to continue each exercise…..not knowing that my shoulder/scapula was still fractured and had not healed at all either as well).

How could I push aside the rage and anger that made several professionals miss such an important detail that I was very vocal about?  How could I give in to the experience when I had so much left to say, learn, live, and experience?

I just kept breathing…..deeply, slowly, studying each item, each line in the ceiling as I was wheeled along in the stretcher.  I focused on the names of those pushing me, and their conversations and attempts to bring calm to me.  I embraced each quirk on the face of my husband, mother, and Medical Case Manager as this may be the last things I see.  I was acutely aware of every single detail and overwhelmed by the voices, noises, and conversations around me.  The lights were bright, my headache grew, and I had to take myself to another place while still being exactly where I was.  I know that sounds silly but I have no other way to explain it..

This fileting of my body with a magnificent dance of his scalpel tools and his skillful artistry beneath the clinical shroud of the operating room;  a handful of specially trained staff who would bring me to the other side of waking up once more…..or so I secretly begged for  – and perhaps begged for aloud as well.

I remember putting on my bravest face and not knowing if this was the day that I kissed my children goodbye for the last time before I saw them walk out the door to go to school;  not knowing if this was the last time that I would see my mother’s face, feel my husband’s touch, and I was so afraid.  I wasn’t afraid to die.  I just wasn’t ready.  I thought on this intensely.  Should I have written good bye letters the night before.  I had decided not to because to me that was the same as giving up.  How do I find the words to say the things that I feel? HowI do I make the words in my head come out on paper in the way I wanted them to and to have enough of an impact to make everything up to that point feel “worth it” when since the wreck I struggle just to get my words to get from my head out my mouth in the way I desire.

How do I trust God and the Universe and all my spiritual beliefs and experiences?  How do I know at this point that God is even real any more?  Then I had to remind myself of all the miracles surrounding the wreck and force myself to believe that miracles would happen that day.

As it so happened…..the 3.5 hour surgery we were told it would take turned into about 8 including the 2 hours in recovery, per my husband and mom.  The stakes were high.  The man I decided at the last minute to trust with my life in its entirety took me on a journey and he and his team brought me out the other side.

This was my first post surgical feeling of gratefulness!!! When my eyes opened and I noticed people rushing around me in recovery, and seeing my O2 sats in the 80’s but just feeling such calm, feeling peaceful, acutely becoming aware again, and just blinking ever so slowly…….grateful in that very moment.  Grateful that I had been allowed to once again survive that Journey…..

The Journey into the Dark Side.

~ Caren, 2014

carenpostsurgery

Brain Injury Poem

Brain Injury Poem 2: Don’t Take Away My Hope

Things may be bad sometimes and to some may seem hopeless, please just let me accept my life in reality and love my life anyway.
But I am pleading with you not to steal what keeps me going…Hope.

There are those times that I am quite aware of how bad things are,
those temporary moments when I can not see through my streaming tears.
But I am begging you to let me hold on to what I know I need…Hope.

Please do not ever say you could not stand to live the life that I have,
you could not possibly know unless my life were the life you were living.
I am asking you to let me have what I need most for the moment…Hope.

Do not make false promises or paint false dreams, let me have my own dreams.
Please do not as a professional, ever say there are no more answers or help.
I am pleading with you to allow me the life luxury I need most…Hope.

Always there are more answers, it may be just you without those answers.
When you say discouraging things,it makes it hard to hold on to my hope.
I am telling you that all patients need that one joint component…Hope.

If you have not walked in someone else’s shoes, do not be too quick to judge.
All of us at times face adversity, just some have to live with it all of the time.
We are somehow able to find strength and endurance through our…Hope.

No matter how grave the situation or how serious the medical problem,
remember that miracles and things not quite understood by man do happen.
Do not ever be so cruel and heartless as to take away someone’s…Hope.

Do not ever say we will amount to nothing or get no where in this life.
As long as we are alive, we can share with someone else what we have.
In giving to others the survival tips we have learned we give…Hope.

by: Debbie Wilson, 7-24-96

– See more at: http://tbilaw.com/brain-injury-poems.html#sthash.ZtsM34Hb.dpuf

Silent Epidemic: Domestic Violence

When we hear traumatic brain injury, we often think of a trauma from say….a vehicle accident, or sports, or falls.

It’s time to continue bringing awareness to this silent epidemic…Domestic Violence.

*Polytrauma and Traumatic Brain Injuries are common with Domestic Violence

* Women experience about 4.8 million intimate partner-related physical assaults and rapes every year.

*Less than 20 percent of battered women sought medical treatment following an injury. A significant number of crimes are never even reported for reasons that include the victim’s feeling that nothing can/will be done and the personal nature of the incident.

*The cost of experiencing Domestic Violence includes medical care, mental health services, and lost productivity

*Domestic Violence affecting LGBT individuals continues to be grossly underreported; it is as much as a problem within LGBT communities as it is among heterosexual ones.

Domestic violence, also known as intimate partner violence, is a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner. Domestic violence can be physical, sexual, emotional, economic, or psychological actions or threats of actions that influence another person[1]

Research on abused women shows that between 40 to 92 percent of victims of domestic violence suffer physical injuries to the head; nearly half of these women report that they have experienced strangulation, according to research published in October 2017 in the Journal of Women’s Health.

DID YOU KNOW?

More than 40 per cent of victims of domestic violence are male.

40% of those reporting serious assaults by current or former partners in the past year were men, and most of their attackers were women.

80 per cent increase in reports from male victims between 2012 and 2016.

Women are as likely as men to be agressors.

Men also make up about 30% of intimate homicide victims, not counting confirmed cases of female self-defense.

Female-on-male violence is often assumed to be harmless, given sex differences in size and strength. Yet women may use weapons — including knives, glass, boiling water and various household objects — while men may be held back from defending themselves by cultural taboos against harming woman

Domestic violence against men can take many forms, including emotional, sexual and physical abuse and threats of abuse. It can happen in heterosexual or same-sex relationships.

Abusive relationships always involve an imbalance of power and control. An abuser uses intimidating, hurtful words and behaviors to control his or her partner.

Men who find themselves as victims of domestic violence are often viewed by and made to feel emasculated and weak. We are told to fight back and ridiculed for “accepting” or “allowing” the abuse. Many people don’t know how to approach the conversation for fear of adding insult to literal injury, or because they simply don’t believe a man can be a victim of domestic violence.

Men are expected to be violent and in control, particularly in control of women, while supressing their emotions and sucking it up whenever life doesn’t go their way. When a man steps outside of this box, he is often ridiculed as weak or as not being a “real” man.
This toxic view of masculinity often leads men to become perpetrators of domestic violence, but when they’re victims, it can prevent them from coming forward. The stigma, and the fear of not being believed, can be so strong that men simply don’t report the abuse.

Abused men have faced widespread biases from police, judges and social workers. Equality should include recognizing women’s potential for abusive behavior.

Claims on both sides should be fairly investigated — without political bias, sexist bias, or cultural bias.

Domestic violence service providers. Screen everyone who seeks DV services for TBI. A brief screening tool that was designed to be used by professionals who are not TBI experts is the HELPS.2
HELPS is an acronym for the most important questions to ask:
H = Were you hit in the head?
E = Did you seek emergency room treatment?
L = Did you lose consciousness? (Not everyone who suffers a TBI loses consciousness.)
P = Are you having problems with concentration and memory?
S = Did you experience sickness or other physical problems following the injury?
If you suspect a victim has a brain injury, or she answers “yes” to any of these questions, help her get an evaluation by a medical or neuropsychological professional – especially if she has suffered repeated brain injuries, which may decrease her ability to recover and increase her/his risk of death.

https://www.biav.net/traumatic-brain-injury-domestic-violence/

http://www.opdv.ny.gov/professionals/tbi/dvandtbi_infoguide.html

Printable version of Traumatic Brain Injury and Domestic Violence Quick Guide

Click to access Domestic-Violence-Fact-Sheet-lb.pdf

https://ncadv.org/statistics

https://now.org/resource/violence-against-women-in-the-united-states-statistic

https://www.everydayhealth.com/neurology/shining-light-on-traumatic-brain-injury-domestic-violence/

https://www.npr.org/sections/health-shots/2018/05/30/613779769/domestic-violence-s-untold-damage-concussion-and-brain-injury

https://www.helpguide.org/articles/abuse/help-for-men-who-are-being-abused.htm

https://melmagazine.com/what-domestic-violence-against-men-looks-like-74ce9500ab8d

https://www.independent.co.uk/voices/domestic-violence-male-victims-shelters-government-funding-stigma-a7626741.html

https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/domestic-violence-against-men/art-20045149

http://www.latimes.com/opinion/op-ed/la-oe-young-sorenson-male-domestic-abuse-20180222-story.html

https://pro.psychcentral.com/exhausted-woman/2018/01/males-can-be-the-victims-of-domestic-violence-too/

Newer Brain Imaging Technology

Medical imaging is an important part of assessing the severity of head injuries, but a new device could help medical providers in emergency situations detect structural damage to the brain even before you reach a CT scanner.
The FDA approved BrainScope’s Ahead 100, in 2014, a device that patients wear on their heads – like a hat – that can produce an electroencephalogram of the brain’s structure.
May 18, 2015 BrainScope Company,
Inc. announced that the United States Food and Drug Administration (FDA) has cleared the company’s “Ahead 200” device. Using commercial smartphone hardware that leverages Google’s Android operating system, the Ahead 200 records and analyzes a patient’s electroencephalograph (EEG) using a custom sensor attached to the handheld to provide an interpretation of the structural condition of the patient’s brain after head injury.
It is indicated for use as an adjunct to standard clinical practice to aid in the evaluation of patients who are being considered for a head Computerized Tomography (CT) scan, but should not be used as a substitute for a CT scan. It is to be used on patients who sustained a closed head injury within 24 hours, clinically present as a mild traumatic brain injury (TBI), and are between the ages of 18-80 years.
In September 2016 Brainscope announced clearance by FDA for its latest device, the Ahead 300. This the first of the company’s products that will actually be distributed commercially and it was touted as their most advanced version. It utilizes disposable electrodes and a connected smartphone to process the information. It relies on the firm’s proprietary algorithms and machine learning to spot certain patterns and correlations within the recorded brainwaves.
http://brainscope.com/
(compiled from various sources)

Biomarkers – Blood Work for TBI

biomarkers-can-reveal-tramautic-brain-injury-293810

Scientists are looking to biomarkers, or biological indicators, in the blood to help them differentiate between brain injuries of different severities. For example, there may be an increase of a specific biomarker in the blood of a patient with a severe injury that wouldn’t be present in a patient with a mild injury. When doctors are better able to determine the severity of an injury, they can make sure patients get the right care at the right time, and that could make a big improvement in their prognoses.

Some of the biomarkers used are the following:

•Known as Banyan BTI (Brain Trauma Indicator), the new test measures levels of two protein biomarkers — ubiquitin carboxy-terminal hydrolase-L1 and glial fibrillary acidic protein — that are released from the brain into blood within 12 hours of head injury.

The Brain Trauma Indicator blood test the levels of two proteins, UCH-L1 and GFAP. Upon brain injury, these proteins are released from the brain into the blood. If found at elevated levels, brain damage, with intracranial lesions, normally otherwise only visible on a CT scan, is suggested. Levels of these blood proteins after mTBI can help predict which patients may have intracranial lesions visible by CT scan and which won’t.

To give approval, FDA used data from a clinical study of 1,947 individual blood samples from adults with suspected TBI and compared blood test results with CT scan results. How did the blood test perform? It was able to predict the presence of intracranial lesions on a CT scan 97.5 percent of the time and those who did not have intracranial lesions on a CT scan 99.6 percent of the time.

•Levels of one protein, called brain-derived neurotrophic factor (BDNF), taken within 24 hours of someone’s head injury, could predict the severity of a TBI and how a patient would fare, they found.

While healthy people averaged 60 nanograms per milliliter of BDNF in their bloodstreams, patients with brain injuries had less than one-third of that amount, averaging less than 20 nanograms per milliliter, and those with the most severe TBIs had even lower levels, around 4 nanograms per milliliter. Moreover, patients with high levels of BDNF had mostly recovered from their injuries six months later. But in patients with the lowest levels of BDNF, symptoms still lingered at follow-up. The results suggest that a test for BDNF levels, administered in the emergency room, could help stratify patients.

•Tau protein (MAPT) possible biomarker for traumatic brain injury . The formation and accumulation of misfolded protein aggregates composed of amyloid-beta (Aβ) and tau. APT is a neuronal protein that plays an important role in axonal stabilization, neuronal development, and neuronal polarity. MAPT release into the CSF and blood has been interpreted as indicative of axonal injury.

It is believed that this biomarker may prove helpful in identifying high-risk patients with mTBI. However, additional studies are needed to establish the diagnostic value of serum tau in detecting traumatic brain injury in patients with mTBI.

(all information compiled from various sources)

Your Life Is the Miracle

I am grateful for so much.  The opportunities that life continues to give us to be together and grow as a family and as individuals.Miracleyouare

The last four years since the wreck have been crazy, intense, horrible, disappointing, amazing and life changing. We have had high highs and low lows.  There were times we didn’t know how we would make it to the next day, next week, or next month.

What we miss seeing at times is that we are all just passing time and occupy our chairs very briefly. We never know when that time will be altered. The time I have been given with my family is a gift.  We can let our experiences make us bitter or better.  We can be caught up in the darkness of our experiences or be guided by the light of strength, perseverance, and embrace the little miracles of the recovery process.

Some say we have had more than our share of loss. I see God’s light in my family every day. I may not understand the loss, pain, triumphs, and blessings – however I trust in the plan that is laid out for us and endeavor to accomplish as much as I can to live up to the gift I have been given by the miracle and grace of having survived so much.

lifemiracle

NEW STORIES – Matters of the Heart

share

I am a Survivor trying to bring inspiration and awareness about Polytrauma and TBI to others.

33 Months ago, our Website Page for YOUR STORIES went LIVE.  Since then, we have met some amazing folks and had the opportunity to share their stories, experiences, and soulful expressions with all of you out there.

If you have not submitted your own story.  You can do that by starting HERE.

Survivors, Caregivers, Providers; Parents, family, or friends – share your story to be published on this site today.  We are glad to help you in any way we are capable.

We have recently finished Stories for various folks that we would like to share with you.  Take a look, read some, leave a comment at the bottom of their story if you choose, and pass the link on.

Let’s bring Global Awareness to Polytrauma and TBI
NEW SUBMISSIONS:        Murray Dunlap – Survivor
                                             Bobby Porter – Caregiver
                                        Jason Stockman – Survivor
                                             Tiffany McCullock – Survivor

Be A HOPEster!

WHAT IS A HOPEster?

A HOPEster is anyone who is interested in helping one person succeed to be independent – even if the person they are currently helping is themselves (specifically related to Polytrauma and Traumatic Brain Injury – though can apply to anything other than these two things as well).

A HOPEster is someone willing to share information, offer support (whether that be emotional, mental, physical, or just by sharing awareness information), and encourages advocacy (self-advocacy, medical advocacy, advocacy awareness).

A HOPEster is someone that thinks outside the box, is passionate, idealistic, and believes in the inherent goodness of others and our collective responsibility to each other as human beings.proud-to-be-a-hopester

https://hopetbi.com/awareness-matters/hope-tbi-awareness/

Story Submission Page – UPDATED

Check out our updated Story Submission Page.

Now with Caregiver and Survivor Writing Prompts

You do not have to be a writer to tell your story. Just willing to share it with someone.

https://hopetbi.com/your-stories/story-submission-guide/

Caregiver Story Prompt

Hello there. Thank you for your interest and considering our site www.hopetbi.com to share your story. I would be honored to tell your story as you wish to share it. We are glad to correct spelling so don’t worry about that.

I want you to be able to tell your story your way. Some things to include in your story that people often have questions about, are listed in the questions below….

Please feel free to add more than the questions listed. This is just a helpful starting point for a Caregiver story:

  1. What happened to cause you to become a Caregiver for Polytrauma or TBI?

  2. What injuries did they sustain?

  3. When did this occur (Date or Season and Year, or)

  4. How old were you when you became a Caregiver?

  5. How old is the person who acquired the TBI or Trauma? How many concussions or TBI’s have they had? How old are they now?

  6. How Long was their recovery? If still recovering what are you involved in helping them with, regarding care?

  7. Can you identify what your biggest struggles are or have been over the weeks/months/years as a Caregiver?

  8. What things do you do for self-care (to cope, take breaks, stay refreshed)?

  9. Were you financially prepared to take on being a Caregiver?

  10. Did you have any special training for the injuries of the person you are/were a Caregiver for?

  11. How has being a Caregiver affected your physical and mental health?

  12. Have you had the social support and resources you needed to provide the care needed?

  13. How has being a Caregiver impacted your relationship with that person since their injuries?

  14. Where do you go to connect to other Caregivers like yourself?

  15. What are some of your hope and fears regarding this whole journey as a Caregiver?

  16. Where do you live now (State, Country)?

  17. What do you want other people to know about your experiences?

  18. Why did you choose to tell your story?

  19. What name do you want represented online (first and last please)

  20. Do you have any pictures you want to submit of the before, during, or after? (accident, hospital stay, incident, etc?)

Ways to submit your story:

  • Writing it and submitting a saved PDF version of your story,
  • Emailing your story to hopetbi4ever@gmail.com.
  • Videotaping yourself telling your story and then we can type it up; or submitting a voice recording telling your story; and please consider submitting pictures to validate your story and make it more personal to others

Who can submit a story? Survivor, Healthcare Provider, Caregiver, Family relative, friend, etc.

Can a story be submitted for someone who has died? Yes, if their story involved sustaining a Traumatic Brain Injury or bodily trauma, and their death was a result of bodily trauma and or Traumatic Brain Injury/Acquired Brain Injury. Please message if you have any questions. You can be the voice of their story if you knew them personally.

Also for you to know…I am not representing any business and there is no compensation for sharing your story. I am a Survivor and saw a need I wanted to help with as much as possible. We post stories on our site to give people a voice to tell their story and a place where others can read it.

E-publish simply means (for our purposes) to post on our site.

SPECT CT – Diagnosing and Treatment of TBI

As Science evolves, so should the diagnosis and treatment of Traumatic Brain Injuries.

brainimagecolor

Check out our newly added Web Page:    SPECT CT

 

This is an important second test in settings where CT or MRI are negative after a closed head injury with post-injury neurological or psychiatric symptoms.

Medical Cornucopia

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So something amazing happened during the last four years, in my recovery process, and through countless hours of rehabilitation.  I discovered that with all my new normals, some things remain the same, some things about me are vastly different, and some things have become hugely magnified or what was once dormant is now renewed in a different way.  What I am referencing in this particular post is my absolute love and passionate interest in medicine, science, and all that entails.

I find I am at peace the most when learning new material in these topics.  This has been my “go to” coping mechanism since I was like 5 years old.  Medicine has always been my first love.  I have gone away from it, come back to it, gone away from it again.  Then when I was wondering just what I should be doing with my life and evaluating whether to have more children, where to take my career, enjoying my job

Some people cope and find their center of “grounding” by running, drinking alcohol, exercising, listening to music, playing video games, communing with nature, watching TV/movies, smoking, having sex, going to church, participating in artistic expression, etc.  Me?  I find that Medicine, specifically investigative Medicine or investigating medical issues is one of the things that brings me a sense or peace, a sense of purpose, a sense of clarity, a calm.

That being said, in this upside down world of taking back my life from this trauma and all the subsequent experiences since the wreck I was involved in….I find that researching my injuries, how to better my life, how to prove the science behind all the subjective, objective, developmental, and evolving facets of my recovery is how I cope.  It has served me well and helped me find the best care, catch the mistakes made by providers, celebrate the things done correctly by providers, find the best providers, realize that even amongst specialists, even the basics can be missed; it has validated many things for me. It continues to enlighten me about the realities of living a new life, and how best to go about it.

Proper diagnosis, proper treatment, and proper documentation cannot be ignored as being imperative and important when somebody endures any medical event or has persistent symptomology. Science is changing and evolving every day.  How small, tunnel visioned,  limited, and narrow minded we would be as patients, as providers, as attorneys, as caregivers, as case managers, as advocates to ignore the advances  in Medicine (both traditional and alternative) and not allow ourselves the freedom to continue to learn, to do no harm, to keep up with current trends, and to evolve into something greater, broader, and grow beyond our proverbial box of comfort?

This website is a part of my legacy.  My venture into baring myself openly to all of you who come across this page, who see these words, who read about these struggles, these triumphs. My attempt to help you find resources easier, should you need them.  At the very least, maybe understand how multi-faceted and life changing a Polytrauma and/or Traumatic Brain Injury can be.

That being said, if you come across a new article, a new treatment, a new study, a new idea, a new topic you want to see in these pages,  a revolutionary sytematic way of addressing recovery and rehabilitation, I would be honored to hear from you and thankful for you sharing what you have found……. with me.

If you have gotten this far down in this post….thanks for sticking it out and reading it.  Please share with others.  Feel free to leave comments below.  I actually read them!

Never give up HOPE!

 

Legal Monstrosity

claims

Hello Folks. I’m back on my blog. YAY!!! While I visit often, I have lots to share with you all, and have much medical information, numerous discoveries, and lots of additions to add to this site over the next several weeks. Now however, I am in a position to express my own personal views candidly and without fear of reprisal about something I have been wanting to for quite some time.

It has been a while since I have posted in my blog here. I wanted to explain that in addition to focusing on my rehabilitation goals, I was also embroiled in a fight for my life with the insurance company representing me in my Michigan NO FAULT claim.

fighting

I had sued them for numerous items of service they were not paying on time/stopped paying under the laws that are supposed to, in theory, mandate and compel them to act in a judicious and timely fashion by the letter of those laws.

I, like so many other NO FAULT recipients, suffered additional and repeated traumas at the hands and manipulation of the Insurance Company(ies) that are supposed to be handling the various aspects of our NO FAULT claims. Instead, bills that they are supposed to pay in full, within 30 days of the bill being submitted to them (according to law); attendant care established through a prescription of a licensed physician ( for home health care, nursing care etc) provided by an agency or family member; medical mileage/travel supposed to be reimbursed after it has been incurred; replacement services (household services), wage loss, and other benefits afforded by Michigan law – they ignore &/or pay at their whim…not based on the actual laws. These laws are great on paper, for the constituents, yet there is no accountability for the Insurance companies to be mandated to actually follow the law on paper.

Did you know that the law States that the insurance companies can be charged “Interest” on any bill that is not paid within the 30 day time frame that it is submitted to the insurance company.

Again, this sounds good on paper, right? WRONG! Apparently the manipulation of that law is wholly accepted throughout the whole NO FAULT process as there are currently not any laws in place detailing when or how those interest payments must be paid AND making them non-negotiable items, or compelling them to actually be something the insurance company(ies) wish to avoid, because they would be required to pay that interest. It does not eliminate them from being negotiated away. They can only be charged this “interest” if you acquire an attorney, sue them, AND actually go through a trial where they can still negotiate out of that responsibility. The majority of cases go through a settlement procedure (like mine) and apparently that eliminates all possibility of them every having to pay interest on anything, that by law, they owe the interest on. This abhorrent process is just one of the many things that needs to be reformed in our NO FAULT system. Bottom line….if you don’t pay your bills within 30 days of receipt of that bill, you WILL incur interest for each day that is delayed. That interest should NOT be allowed to be negotiated away in Settlements, Trials, or other modalities regarding the NO FAULT process. This is a willful and purposeful choice they make, knowing there are no consequences. Holding them accountable, will, in theory, allow the NO FAULT system to do what it is supposed to do, take the burden off the individual who was actually in the wreck, so they can focus on their recovery. This would also take the burden off of the Courts being tied up in months or years of the back and forth legal ping pong that these Insurance Companies can afford to play. Reform should be attempting to compel the Insurance Company(ies) to do their jobs …..with our money.

The NO FAULT system through and through is a progressive, positive and integral part of our infrastructure in this State, absolutely worth saving and investing time and money in. It is a system to be envied by all other States and a model worth replicating. However, it is a system that needs transparency across the board, and accountability across the board as well though. After all, fraud and spuriousness is often propagated by the Insurance Company and their agent(s) themselves.

NO FAULT does require reform and clearer lines of accountability for all involved, but specifically the Insurance Providers themselves (obviously I feel this cannot be expressed enough). The very leviathan presence of these companies who with impudent disregard for the Courts, Judges, constituents, and laws voted on and enacted by the constituents (voting citizens) – often find themselves escaping their financial responsibilities, shirking the due diligence required of them, and using subterfuge and prevarication, knowing there is nothing to hold them accountable. Nothing at all. In my opinion, this is the grossest form of medical negligence, injustice, and sheer despicability.

That all being said, I have come to the end of this particular chapter of this grueling process through a Settlement process that was to say the least….less than desirable. Since physicianthe wreck I have literally fought for each breath, each step, each grip, each movement, each thought; each valuable, talented, progressive, and proficient providers; each benefit afforded to me by law, each opportunity to improve and have a decent quality of life. While not easy, while not always positive…absolutely necessary to survive.

I have endured countless days, weeks, months…and now years of acute/chronic pain, loss of body integrity, loss of social confidence, ongoing medical crises, and a complete change in my life, the way I live and relate to others and even relate to myself.

I have been made aware, through my personal experiences, of the dark side of the medical establishment that includes some incompetent white_coat_man_small_compressed_400x4008763830801952850647.jpgcolluding providers “in white coats and black hats (figuratively speaking)”, inaccurate medical documentation, missed/delayed labs, missed/delayed surgeries, missed injuries, delayed treatment,missed radiology exams, and the desperately fallible humanness of those we should be able to trust implicitly with our lives.

Despite all of this though….I have learned to advocate for myself on a different level. I have learned I AM a voice for those who are not able to be one for themselves. I have learned that we as a medical society are only just starting to learn about the miraculous processes that make us who we are.

I have learned who my true friends are or aren’t. I have learned that there is always a reason to HOPE and to never give up. I have learned that FAITH and LOVE really does prevail over darkness and injustice.

I have learned that every bit of essence that this blessing of a life has given me by the miraculous opportunity I have been given to survive is something to be protected and coveted. I have learned that sometimes being an honest, honorable, and sincere individual is sometimes just not enough. I have learned that discrimination comes in forms we don’t even talk about as a society. I have learned that I can endure more pain than I would have ever thought possible. I have learned that my life matters and I can find value in the person I am now. I am still learning how I can make a difference in this world and be a catalyst for positive changes and not compromise the core of who I am.

Finding the path to recovery is not just a journey….it is a pilgrimage. I will survive, despite continually traversing all of this Legal Monstrosity.

Your Life Matters

Believe your body. Trust your body. If something feels “off” then check it out. Be bold. Be brave. Keep striving to find answers to help you live YOUR best life.

Forget the naysayers, those who do not support your personal growth, and those who seek to bring you down.

You do not need to live the life others think you should be living; not the life others want you to live; not the life that cannot be reclaimed in the way you lived it before; not that familiar life from the past that you grieve being lost

This is YOUR life….your NEW NORMAL. Own it. Embrace it. Learn from it. Thrive in it!!!

Lone Wolf Journey

Your destiny is in your hands. Stay strong. Keep going. Never give up. Be bold. Be different!

#hope_tbi #survivorjourney
#polytrauma

https://t.co/ipfOlhbvUY

May the 4th Be With You

I spent the whole week anticipating when January 4, 2018 would arrive.

I was awake past midnight drinking in the fact it was finally here. I eventually went to bed confident I would wake up again in a few hours. I did wonder if I would feel differently.

It has been 4 years since the wreck happened as of Thursday January 4th, 2018. It has been hard to separate my life from that one catastrophic event and the events that took place around that time. It’s like my body’s cells hold the memories my mind cannot seem to bring to fruition in their entirety….even now.

All day my body ached, spasmed, and refused to cooperate with me. All day, with each deep breath and slow measured movement I was reminded that even though it was four years ago and a different time entirely – the pain goes on.

All day with each deep breath I was grateful. To be able just to breathe and be aware of what was around me seems like such a precious gift. To be able to hear the kids waking me up and to hug them and touch their beautiful faces was such a simple pleasure I lost for a while back then. To walk (albeit slow, painfully, and guarded) around and touch a door, a counter, the wall, a picture, and descend the 13 stairs that always feel like an accomplishment to tackle…going up or down – was a gift I remain grateful for still.

I have a life. No, it’s not my old life. It’s not a life without daily physical pain. It’s not a life without struggles on many unseen levels. Hell, it’s not even the life I wanted, dreamed of, or imagined for myself at this age. It is starkly different. However, it is still valuable. In many ways, even with all the seeming uncertainty my life still matters and I love my life even more.

The value of having love from a person who truly believes you and believes IN YOU cannot be overstated. That love pulled me through dark pain, dark thoughts, and from the other side where HOPE dies, Faith falters, and the darkness of depression laps up the drips of ongoing pain and overwhelming fatigue. Love, patience, acceptance, tolerance, validation, and empathy. I am blessed with these every day from my husband, my mom, my kids, my brother, and most of my providers.

I am stuck. Stuck between true determination, progress, and fortitude and a stagnant knowing acceptance of this pain going on for eternity. Stuck from moving forward as each step forward drags me backwards towards the abyss a little more each time. Stuck being a hypocrite of sorts because I work to find value in the pain and limitations of these disabilities. Even though I find myself begging for relief from my Creator as some days it is too much to bear. Stuck with wanting to work and bring awareness to Polytrauma and Traumatic Brain Injury ….all while having the consistent lack of cooperation from my body, mind, and utter lack of motivation.

I feel relieved for meeting people, groups, and providers who truly value life as I now know it and help me stay on track.

I feel like I should be saying something wise, positive, and upifting today to all of you reading this. Yet I have nothing else but that which I already continue to give. My transparent self.

So much swimming in my head today. So much healing validation. So much continued angst and so much continued life force to pay forward.

Let us remember the 4th Anniversary of my survival, my youngest son’s survival (and that of Greta the other driver). Let us remember that this was the day Caren died four years ago and was brought back; to show that HOPE lives and all things are possible as long as we dont get tunnel vision. With a little Faith and a whole lot of self-determination I embrace the desire to SURVIVE!!!

To all you other warriors out there standing up to your own dark sides and embracing the changes that continue to engulf you…or to those who are helping them face their daily battles….thank you. May you know peace, may you know relief, may my strength be the light saber that helps you find your own independent path as well.

At the end of the day, do your best. Make every effort count and never ever give up HOPE. May the 4th be with you!!!

Thanks For Following HOPE TBI

I just wanted to thank those of you who have signed up on our email notification list here on our website http://www.hopetbi.com

I also want to thank you if you “liked” our page on Facebook and follow the Blog posts. It means a lot to me and hopefully what I write is helpful to you or someone you know in some small way.  If you haven’t liked our page on Facebook yet….now’s your chance.

HOPE TBI – FACEBOOK (FB) (online support and information Group)

HOPE TBI Co-Op and Exchange (donate items needed to others, acquire needed items  – no selling or vendors allowed here)

HOPE TBI – Facebook Page (we have a Facebook page; this is separate from the Support Group.  Remember to “LIKE” us on Facebook)

Follow us on Twitter: HOPE TBI (@hope_tbi)

Contact us:         hopetbi4ever@gmail.com

Remember to leave comments after you read an article, whether positive or negative. Your opinions are valuable and I welcome the feedback.

Help me bring awareness to Polytrauma and Traumatic Brain Injury….SHARE SHARE SHARE 😊

Love you guys muchly.  Never give up HOPE!!!

Hurtin’ for Certain

pain

 

Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions.   Examples are the following:

  • Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day.  On my worst days this creates a lot of fear and anxiety]

  • Heightened physiological arousal, such as tension, nervousness, irritability, startling easily, poor concentration, or poor sleep

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

  • Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful.  Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken.  Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas.  At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold.  What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now.  That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now.  I accept it as my new normal.  My new cloak of pain I have become accustomed to.  Chronic pain that some days holds me hostage from accomplishing what I desire.  That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body.  A polytrauma screws all that intuitiveness up.  Some days it’s hard to know what is up or down or sideways with where that chronic pain is located.  Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own.  My back aches, my feet intermittently get pins and needles.  My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day.  My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again.  My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun.  My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times.  Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this.  Of course, the trade-off  to taking on more responsibility is being more irritable, hurting more,  having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

joint pain

I am a whining mess as I type this as I so get tired of hurting and aching.  Here is the irony though.  I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well.  Any new flares that are not the new normal are seriously emotionally and physically exacerbating.  It’s like “seriously how much must I take”.  So the trauma continues and I remain….Hurtin’ for certain.

Emotional Lability – Web Page Update

Check out our latest Website Page – updated with additional relevant information.
You can find this under the “Rehabilitation Journey” Tab.  Then click the dropdown for “Emotional Lability”.
or go directly to page here:  Pseudobulbar Affect – Emotional Lability
Please consider leaving a comment under the article on our web page after you have read it.  We like to hear your feedback about what we are posting.  Thanks.

7 Mysteries of Polytrauma Exposed

 

mysteriesbrain

  1. Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space.  Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.anxiety

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances.  I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment.  There is a lot of planning that goes into getting out and about.  There are things to consider that I took for granted before the Polytrauma.  Checklists are my friend.  If I deviate from this process we have established, things do not go well at all.

Some days I do better than others.  I find I am able to be out longer and more often than even a year ago.  However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible.  Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards.  A one day trip could take several days to recover from.   A day of appointments could take a week to level out from again.  If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement.  Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

  1. Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general.  I wanted desperately for things at home to be normal.  Since the polytrauma I would feel emotionally and mentally….well…..flooded.  Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away.  In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me.  It is like there are too many sounds to sort out or too many thoughts to try and think at once.  I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out.  So we came to an agreement that if I said “Brain Time”  all things ceased no matter where we were.

Reset-ButtonIn the beginning  I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head.  No interruptions, no calls,  no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days.  I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still.  I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process.  I am learning to pace myself still and manage this more effectively.  This does not make for a great social life though, I will say that.

  1. Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere.  I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival.  When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable.  No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward.  The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

redTwo and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken.  I was horrified to find myself LOST after taking my kids to school.  In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before.  I used a GPS because it was like I had never been there before.  Now THAT made me feel coo-koo….I didn’t understand.  Then I got lost heading home.  I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed.  GPS became an absolute crutch.  As time has gone on, I have gotten better about figuring out my routes.  Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST.  I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS).  Most times he would answer the phone, sometimes  he didn’t hear it and I would be out there in a full blown panic.  I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me.  I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it.  I do not remember how I made it home in those elevated panic times.  What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room.  It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at.  If I forget I just turn on the GPS.  We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way).  So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma.  Oddly enough sometimes I get lost in my own neighborhood or kids’ schools.  If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

  1. Peat and Repeat Languaging – the way I communicated became annoying and complicated.  I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible.  When people would talk to me I had to have them look at me to hear them.  I found myself reading lips to understand what I was hearing, or thought I was hearing. Speech Bubble Indicates Speak Dialogue And Speaking If they turned their backs to me I would ask them to turn around and repeat what they said.  Some folks are super accommodating, some act put out by this.  Often times folks think you aren’t interested in listening or you do not care about what they said.  It wasn’t that, I just couldn’t process what they were saying.  Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes.  Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words.  This was maddening.   Oh!  if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey,  not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance.  I am a lot better about being vocal about it though with who I am speaking to now.  Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

  1. Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since.  I love words, their meanings, and expressing myself in a creative fashion.  I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed.  I couldn’t remember how to spell basic words.  I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch.  I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”.  I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

  1. Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together.  I could always tell when I was hungry, when I was full, and when I was snacky.

 

bonAfter the polytrauma I seemed to lose the ability to feel hunger or fullness.  For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general.  No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before.  My sense of taste and smell had changed.  Some of the things I enjoyed before now repulsed me.  Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation.  In fact, if I wasn’t brought my meals in those early months and sometimes  still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though.   More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before.  My family and I equally find this as quite bizarre.

  1. What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE.  More specifically FREEZING MY TUCHUS OFF!!!  I was always cold.  I couldn’t get warm, not even in the Summer months.  People would be sweating and I would be freezing and covered up with  my electric blanket and shaking from being so cold.  I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

jamaprintI have come to realize that my thyroid-pituitary-hypothalmus axis was way off.  My hormones were all over the place and apparently I rattled that temperature control  center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature.  At least now I can feel warmth eventually and not be as  cold.  Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down.  More often than not though, I still get cold.  Brrrrr’kin is what the kids call it.

So what temperature is it anyway?  I am probably not the most reliable person to                ask.  You might want to check outside…..then let me know.

 

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning.  If you are experiencing these things, you are not alone.  What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

 

 

Michigan No-Fault Insurance – Is It Worth the Fight?

The answer to that questions is quite simple for me.  it is a resounding and emphatic YES!!!

I am so eternally grateful for the No-Fault system. I sustained a Polytrauma which included multiple orthopedic fractures (5 in my spine alone, ribs, wrist, pelvis, scapula/shoulder, soft tissue injuries, nerve damage, and a traumatic brain injury).

Thanks to Auto No Fault I was able to have the necessary MULTIPLE xrays, CT Scans and lifesaving surgeries to help me survive. I had to go out of State to save the use of my arm due to a shattered scapula as we have no Trauma surgeons in Michigan who were trained to do that repair. Michigan No Fault made it possible for me not to lose all of the function in my right arm. My whole scapula and shoulder had to be rebuilt.

Medicaid and Medicare would NOT have covered this. We would have been stuck in months of pre-authorizations and appeals and I would have died.

I would have left behind my husband (who is also my provider so I could remain at home and not in a nursing home) 6 children, a mother, a brother, a
nephew, and other family. I would have lost the ability to advocate for others and to function at the level I currently function at.

My story would have ended tragically. My story, while yes, tragic and traumatic continues to be HOPEFUL due to Michigan Auto No Fault.

I WILL need surgeries in the future. It isnt IF….its WHEN. Auto No Fault provides me with the medical security to still be here for my children, and hopefully some day….their children.

Please, I implore all voting members to vote

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

You are literally investing in Michigan’s future and survival by voting to save lives and protect the communities you are pledged and voted in by your constituents to serve.

What do you want your legacy to be as a politician, as a fellow human being leaving their mark on this world???

Someone who saved lives and cuts costs by holding insurance companies accountable, or someone who sentenced thousands of men, women, and children to death and financial ruin?

You can be the implement of positive change. You can be a hero. You can be a HOPE’ster.

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

Thank you.

https://hopetbi.com/2017/05/29/be-a-hopester/

 

UPDATE: 11/2/2017

HB 5013 did not have enough votes to pass. This is great news for the whole State, but especially for the recipients of No-Fault benefits.

The Latest and Greatest

Check out our Updated “How You Can Help” page.

https://hopetbi.com/about-our-site/how-you-can-help/

Sound of Silence

Much like the Simon and Garfunkel song…well, back to that in a minute.

Image result for sound of silence lyrics

So I have always been proud of my muti-tasking abilities throughout my life.  Being able to focus in many directions at once and deal with any level of noise without issues.  In fact, when I was much younger I used to go dancing and I loved bopping away and really enjoyed the techno beat of the music.  I used to be in marching band years ago, Jazz Band, Choir, Show Choir (kinda like Glee for those who have never heard of it) and let me tell you….you just get used to moving, spinning, dancing, and lots of noise.  I have always been a lover of music in almost all forms and preferred to listen to music almost all the time.

I loved going to football games, Image result for marching band competitionsporting events, and Pep Rally’s are an amazing memory.  As I grew into an older adult some of my music interests changed, yet I still held on to that love of music (which my parents would have probably argued on some days was noise to them).  When I worked in Emergency Medicine, I love the sound of the sirens, the pager going off, the squelch on the CB or radios, the multiple directions and decisions that had to be made to save a life.  I knew by their sounds whether it was “go time” or not.

When I met my husband I loved that he played the guitar.  My dad used to play all the time and we were a musical family growing up and I was quite ecstatic that I didn’t lose that with marriage.  When I became a mother I loved the sounds of my children.  All their sounds. From that first cry, to their first words, to their first debate/argument (yes – abhorred and loved at the same time too).  I was pretty good about being able to sort and filter out what I wanted to hear and didn’t want to hear merely by choosing…then remembering to finish what it was I was working on (which seemed to be everything all at once).  I could talk to more than one kid at a time, answer the phone, stir the dinner I was cooking, with music playing in the background….though admittedly it was often more than one type of music from more than one kid at a time as they listened to their “stuff”.  I loved my jobs.  I loved working and the business of it all and the multiple directions needed.  I was always felt I flourished in tight deadline and crisis situations in the workplace.  A lot of times, admittedly – in my younger years, my colleagues found me to be a little “too happy and cheerful”.  I heard that a lot.  What can I say……I really loved doing whatever it was I was doing at that time.

Studio28

There was also nothing more spectacular than going to a movie theater with the whole family and listening to the loud blaring beginning of that giant picture on the screen with each thunderous sound from one scene to another.  Now that is relaxing!

That is…..until the wreck.

I came out of that wreck different in a lot of ways I still continue to discover.   Some things about my personality became enhanced, some disappeared altogether, some new things cropped up that I have been unable to explain.  Some things about my tolerance, patience, general mood, ability to withstand hearing things in the same way and do things in the same way changed dramatically.  The way I thought about things, processed things, felt things, literally EVERYTHING became like I was experiencing them for the first time……or even worse, not at all. I do not dance anymore.  I do not multi-task like I used to, and I do not hear like I used to.noise

I honestly could not stand noise in any form for a while.  Literally, nothing.  Just the sound of the nurse’s feet walking in the room and the scuffing of their shoes was overwhelming.  The door opening and closing, the beeping and whirring sound of the blood pressure cuff, the constant talking in the hallway, the toilet flushing, people always asking me questions I couldn’t understand or I would answer quickly in the hopes they would soon just be quiet.  My memories of the hospital are in and out.  I remember voices and feelings more than I remember faces, names, or the day to day stuff that went on.  I remember pain.  Lots of pain.  I was dizzy, head a constant headache, and nope….no music thank you.  I also noticed I had a problem with how horribly bright it was everywhere.  When they would turn down the lights it was delicious and relieving.  Even the red lights from the monitor would hurt my eyes.  Those little night lights built into the wall at hospitals….nope, not my friend.

Then I went home.  Things were so different.  The house looked different as we pulled in the driveway.  The sound of the van door shutting, the leaves blowing, the clunk of the wheelchair, the shushing of the adults to the kids as I made my way inside.  The days that followed brought lots of appointments and a constant assault on my head, my eyes,  and my ears.  On top of it all I could “hear” the crunching of my shattered scapula moving with each therapeutic effort.  I could hear a high pitch tone that never seemed to go away for the longest time.  It almost sounded like a dog whistle or a fine squealing.  It was awful.  I noticed that while I had this going on, it sounded kind of muffled at the same time and it became difficult for me to focus on words, sounds, and more than one noise, or more than one person talking at a time was enough to send me into tears.

As time passed I noticed it helped if I read readinglipspeople’s lips to understand what they were saying.  Sometimes still I will see lips moving, know they are talking, yet understand NOTHING. I have learned to ask for repetition a lot.  Sometimes I just act like I know what they said….nod….and smile.  I learned little tricks, like wearing earplugs, sunglasses, carrying a blanket to cover my head with, lots of those types of things to cocoon myself from the auditory assaults of whatever environment I was in. Continue reading

Polytrauma – The Ripple Effect

rippledefinition

There is a chain of events that happens with an auto accident that involves serious injuries, polytrauma, or death.  rippleA ripple effect that swirls and snatches and seeks to destroy not just the patient, but the family, the spouse, and friendships of that patient as well.

First, there is the initial accident.  This not only causes the injuries, but causes a multitude of mental stressors as well.  Fear, anger, shock, disbelief, numbness, sadness, enormous helplessness and grief.  If the person survives there are things that help relieve those stressors – such as gratefulness, happiness, apprehension, confusion, hope, and for some, a distinct solidification of their spiritual base.

The stressor for the patient is that the accident itself has happened to begin with; thus causing a multitude of injuries that may affect more than one aspect of their life. They may have memory and cognitive issues in addition to orthopedic injuries.  They may have behavior changes and appear to be a different person than they were before the auto accident.

The person may or may not have support and help from a trusted circle of family or friends as they fight to survive, exist, and recuperate. After a while though, often times, friends disappear.  Sometimes, the burden is too big to understand or absorb for family as well. A catastrophic injury absolutely shows you the genuineness of the people around you. Life continues to move on without you and you become acutely aware of this.  The relatives, coworkers, friends who were supportive at first…eventually go about their lives and forget that you are there….still struggling.  The patient is left circling in the same spot, sometimes for months at a time.

Every stressful event that happens AFTER the accident compounds and slows the recovery process and adds to the mental and emotional stressors in the patient and their relationships with others.  PTSDAny delayed treatments, or misdiagnoses, or haggling over care of the patient (whether by the family or the patient themselves) causes additional added stressors, which impacts the ability to heal in a timely fashion.

Something not often talked about or studied is the real impact that Polytrauma and Traumatic Brain Injury has on the spouse or children of the patient.  There are changes that happen in those relationships.  The household dynamics may change significantly leaving the family feeling disorganized and broken.

Children may feel insecure, may blame themselves, feel helpless and hopeless about their parent’s recovery or their parent’s relationship.  They may act out in ways they did not used to.  They may regress in their development, they may become isolated or clingy. They may try to act in a parental role with siblings themselves.

Child trauma

They may find ways to cope that are not healthy.  Some kids are able to adjust to the changes going on with their parents with lots of support, education, explanation, and patience. Some are not able to adjust.  Sometimes the injured parent is too different for them to understand. Sometimes witnessing the changes in their parent is too painful.  Sometimes a spouse or child can incur secondary trauma/PTSD as their loved one recovers.

The dynamics in a marriage are also hit with one wave after another depending on the level of injuries a patient has and how severe they are.  In a polytrauma or with a traumatic brain injury, often times spouses are forced to take on the previous responsibilities of the patient (household duties, scheduling, transportation, budgeting, cooking, cleaning).  This may overwhelm the spouse if they previously depended on their now injured spouse to handle those responsibilities.  Compassionn FatigueThe financial stress will compound quickly.  The person injured, if a working parent, may be unable to return to work for a period of time…if ever.  This creates a massive financial dynamic shift for the whole family.   If insurance is not available, or does not cover all of the medical bill this can spell financial ruin for a family.  Not many individuals or families are in a financial position to endure a catastrophic injury/event.  This is only compounded when the parent that is left working loses their employment because they are taking too much time off work to care for their spouse/family member.  This can exponentially compound the stressors in the household.

Even the kids can be affected by the financial changes both directly and indirectly.  A family may have to go to food banks, acquire assistance from agencies for bills, food, utilities, transportation, etc.  Some may end up losing their homes and become homeless.  This is a dynamic ripple affect that goes beyond the initial injury at the time of the accident.  This ripple affect can continue for weeks, months, or years.

Brain injury often brings on drastic personality changes, which may include irritability, depression, limited awareness of injury-related changes, and argumentativeness.

never the same

Some spouses may feel like they are married to a stranger.

They become concerned about whether their spouse will ever be the same again.  The reality is, they will not.

 

The working spouse may feel alone in the marriage or like a single parent (if they have kids) due to the inability of the patient to take on the same responsibilities and roles as before.  The non-injured spouse may also lose their marital benefits for an undetermined amount of time.  The loss of a partner that they previously shared comfort, affection, mental support, and did activities with. This can put another layer of strain on the marriage, which is now no longer, a normal marriage.brokenheart

While most people, in an ideal environment without financial devastation and strong support systems in place, progress in their healing over time in a seemingly more timely fashion;  a patient with all these added stressors can actually see a delay or lengthening of their recovery period, an exacerbation of some of their symptoms and the real potential for more permanent disabilities.  Some patients may even develop mental health challenges in relationship to adjusting to their life of “new normals”. Coming to grips (acceptance) of their injuries, limitations, and the domino affect of seeming losses from their injuries, can be crippling and make the patient and their caregiver feel isolated and in a constant “survival mode” state.

The team in place to help the person recover should absolutely include their providers, and include the insurance company handling their claims as well.  Any delays or standoffs regarding reasonable and necessary patient care only seeks to elongate and sabotage the patient’s recovery and future progress.

The ripple affect continues.  The waves of pain also continue, yet the tsunami of numerous medical appointments lessen as time goes on.  The relationships the patient is left with will continue to shape the shores of their life as they now know it.   Some relationships will erode over time, some will get swept away by the current of recurrent trauma’s, some will stand the test of time and hold strong and true.

These moments.  The moments that are not measured by the number of breaths we take, but rather the moments that take our breath away are the ones that leave us grateful for being able to wake up to the ripple of a brand new day.

Fresh bamboo leaves over water

Crisis Text Line

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WebSite Page Update – Scapula Nonunion

Check out our newly updated webpage about scapula fractures and shoulder injuries from trauma.

SHOULDER INJURIES FROM TRAUMA –  SCAPULA NONUNION

Scapula2014Scapula1

Flail Chest and Rib Plating

Check out our latest Web Page addition. “Flail Chest and Rib Plating”

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Vision and Sensory Center

Vision and Sensory Center – Cutting edge of current science and treatment of traumatic brain injuries.

https://www.facebook.com/Vision-and-Sensory-Center-1822007318073764/

Chronic Pain is NO JOKE!

 

Chronic Pain Is No Joke!

So it has been 3 years 5 months and 26 days since the wreck I was in.  I just call this 3.5 years to round up when talking with people now.

So much has changed in that 3.5 years….and continues to.  The time I have spent adjusting to living with that pain will I believe be lifelong.  I have come to believe that pain is a lot like grief, just in a different form.  Like grief, there are various stages (also much like grief).

Grief Stages Denial, Anger, Bargaining, Depression, Acceptance

Denial & Isolation with Chronic Pain

The first reaction to learning about trauma is to deny the reality of the situation. “This isn’t happening to me, this can’t be happening to me.  I don’t have time for this to happen to me,” – though I think I skipped this first stage initially since I was so out of it.  I don’t think I had any ability to conceptualize what I had going on with me…..at least not fully. If I didn’t skip it, I don’t remember experiencing this as a first emotion.

I have always known throughout my life that it is a normal reaction to rationalize overwhelming emotions and to push away dealing with them for most people. This allegedly helps carry us through the first wave of pain or shock. However, when dealing with Chronic Pain that is caused by bodily trauma there is not just one wave or an “initial wave”  – there is simply….just…..PAIN.

The reason I said that pain is a lot like grief because pain comes in all forms. Orthopedic, muscular, nervous system related, brain/mental system related, endocrine systems, digestive system, reproductive system, literally every part of the body is engaged in this trauma when dealing with a Polytrauma and Traumatic Brain Injury.  Each system can be going through it’s own forms of “grief” or “changes” or they can all be happening at once….overwhelmed…..frozen…..stalled….or shutting down in response to the trauma.

Attempting to take all that in and learning that no one around you really truly understands is incredibly isolating.   Being unable to put to words how you are feeling when you have never been put into a place in your own life to need words to describe such a horrific continual experience feels isolating.  I would deny deny deny that this was actually happening – yet the pain made that reality absolutely undeniable.  All I could think of was PAIN….where the hell is all this pain coming from?  There was so much I couldn’t pinpoint a starting place.  It was like someone wrapped me in a warm pain blanket that was turned up to the highest level possible without relenting for months and months (literally)

Anger with Chronic Pain

As the effects of denial and isolation change in their dynamic,  reality and its pain re-emerge stronger than ever. I admit I was not prepared for this emotion which continually hits me in random waves. The anger may be aimed at inanimate objects, our healthcare providers, complete strangers, friends or family. Anger may be directed at the person we perceive that hurt us or even angry at ourselves. Often times feeling guilty accompanies being angry and for some people, this makes them angrier.  Sometimes being angry is a side affect of the trauma….especially if dealing with a head injury and the emotional center of the brain has been damaged.

As anger relates to chronic pain though – at least for me, the anger comes from not being able to do what I used to do.  Anger at having this affect my life, my mobility, my independence in caring for my own body, and change my normalcy to something I no longer recognized.  Anger at literally feeling like a prisoner in my own body and having expectations that are not realistic for the healing required for the injuries themselves, or my ability to deal with the injuries.  Anger about missed injuries, or those that are not healing as planned. Angry at feeling dismissed, not taken seriously by anyone outside of ourselves when I say I am hurting.  Angry about being financially destitute and unable to provide for my family the way I used to. Angry that I am hurting at all.

Some things that come with chronic pain and anger

  • Sudden muscle spasms or pain “flares”
  • Inability to take a deep breath or feel like the room is collapsing/shrinking around you
  • Feeling okay and then a wave of anger appears from nowhere and leaves just as suddenly as it came
  • Low tolerance for things you were able to tolerate before (everything seems exaggerated when angry or hurting and angry)
  • Guilt or shame for angry outbursts (when pain unrelentless or spiking) after you have had time to calm down and think about it
  • Appropriately angry about something but then transferring that anger to someone else about something completely unrelated to what you are really angry about

Bargaining with Chronic Pain

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control. Let’s face it, with a polytrauma where you cannot walk/have difficulty walking, where you have to have someone feed you, dress you, wipe your butt for you, bathe you and leaves you feeling completely helpless – is a complete loss of control in its most humbling form

Admittedly I have always had a leadership/controlling personality.  I enjoy doing a job well and got value from how others viewed my ability to lead, accomplish, and successfully complete something.  I loved my independence and enjoyed working and breaking new ground in almost every aspect of my life.  Now I am trying to reinvent me.

Then BAM – chronic pain comes in and strips down any ability to control…at least completely what’s going on in your own environment – your own body.  This is truly where things spiral a bit…I personally tend to get consumed with dark thoughts and overthinking my care or lack thereof.  I think about how I can negotiate better treatments, better documentation, a better more proactive diagnosis.  It becomes almost obsessive.  I have to admit that there is a fine line between bargaining and advocacy for oneself (which has actually served me well orthopedically). However, along with bargaining comes some pretty repetitive self-talk.  This can be a strength and a weakness in the recovery process.

  • If only they had researched my injuries and found solutions sooner my rehab would have been shorter
  • If only they did the basic tests they would have caught that faster
  •  If only I got a second opinion from another specialist
  • If only I tried to push myself more
  • If only I didn’t push myself so far
  • If and if and if and if…even with God/Universe “God if you help me get through this pain I won’t do this”…..or “I will do this” just to help me deal with this pain that is controlling my life and every breath
  • Getting lost in “what if’s” and “if only’s” consume every decision in this stage.  This can lead you in directions of improved care, or hamper your progress – there is a fine line for sure
  • The desire to have my life return to the way that it used to be, restored to no pain zone, the ability to do more without pain, the desire to cope with the pain
  • The desire to go back and keep wreck from happening altogether

Depression and Chronic Pain

There are many types of depression out there.  There are 2 types of depression when dealing with grief and loss that appear most often though. The first one is a reaction to relating to the loss. Sadness and regret predominate this type of depression. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words.

The second type of depression is subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our old self as we knew it farewell, while dealing with our “new normal” and the chronic pain that we now live with.

With a polytrauma or traumatic brain injury a person is often on a lot of medications to control various injuries or mood disorders.  Some of these medications can actually cause depression. It is hard sometimes to tell where the depression is coming from and requires a thorough awareness of the patient’s medical history.  When dealing with depression in myself I learned my depression was there due to many factors – all secondary to the wreck and the ripple affect of all the injuries.  I got news for ya’ – peeing yourself in public because you aren’t able to get to the bathroom fast enough when that urge hits ya, living with a chronic headache pattern, chronic pain, and short term memory loss can be very depressing in and of themselves – and that’s just the basic stuff.  Now add money problems because you cannot work, being unable to pay bills on time, and all the other normal life stressors which now seem bigger than the pain some days and that depression can drag you down like a cinder block tied on your back while you are in life’s swirling pool.

Seeing your friends lives go on, seeing your family move on while you seem stuck in the same vicious circle – wake up pain, walk – pain,  exercise –  pain, carving your way through the day until you can go to sleep to hopefully escape pain –  (some days that actually works…… over time….until a pain flare)

When depression hits me hard, I notice that grief that holds hands with depression has a bit of a tighter grip. Sometimes this stage feels as though it will last forever and can feel truly overwhelming. I also notice that depression is harder to control when hurting.  So being in chronic pain is often not necessarily related to a mental illness (though can be related to endocrine and hormonal imbalances caused by trauma as well), but rather a response to hurting so much for so long and feeling frustration over adjusting to that “new normal”.  I also have realized that my pain tolerance has changed dramatically over the last 3.5 years.  I can withstand a lot more pain that I used to on some levels – not so much on other levels.  I also notice my depression has changed with that adjustment.

Also, by golly, depression is an appropriate emotion when experiencing great loss. A lot of people….professionals even – act like it is some kind of an unnatural process. That cloud of intense sadness that consumes one’s being when they feel like they are all alone in their experiences and realize that their life will forever be dramatically different is a real sense of loss. I really have to guard myself against that whole feeling of “what’s the point in living”  “why did I survive”  “what am I here to accomplish” and force myself to focus on positive self-talk.

Depression is not a “state to be fixed”, something to “snap out of”. Though I do believe it is important to recognize that our feelings are very real, but do not always tell us the truth about the situation.  Grief is part of the healing process.  Chronic pain is part of my life now.  Some days I manage it better than others – some days….not at all.  If grief is a process of healing, then obviously depression is just another important step on that journey. Allowing myself to experience it (yet not get stuck in it) is also an important part of that process.

Depression is also not consistent and can last a few moments to never ending cycle from day to day.   It’s okay to cry here and there for 5-15 minutes at a time my counselor told me. That is healthy.  It’s a problem though to be really addressed if it consumes your life so much you can do nothing else because of feeling so depressed.  If all I can do is think of the depression and cannot quit crying and am withdrawing so much that I am neglecting myself (eating, hygiene, activity participation), then more professional help may be needed.

Acceptance and Chronic Pain

Not everyone is able to reach this stage.  I still struggle with this stage myself on a daily basis in my rehabilitation process.  My counselor calls my ability to accept the changes to my life, my body, my new normals as a need to have “radical acceptance”.  Let’s face it….something radical has happened to me and therefore requires a radical form of acceptance.

Sometimes seeing beyond our anger or denial makes this more of a difficult process. This phase is marked by being calm. This is not necessarily a period of happiness and it is imperative to distinguish this from the apathy or withdrawal that I spoke about in depression.

So what does it mean anyway to have a radical form of acceptance?

Radical Acceptance to me, means completely and totally accepting something from the depths of my soul and with mind and whole beingness. I have to face the reality that I may never be able to work in the same way that I used to.  I have to accept that I am at my medical best in some things, still improving in others, and that yet others may never improve (or may even get worse). It means accepting I may need to use a cane, go to counseling, change the way I do things.  It means accepting that chronic pain is just a part of my life now and learning to work around it as best I can. It means knowing that my nerve damage may never heal (or it might) and accepting that.  It means to stop fighting reality.

Radical acceptance means that I do not allow myself to feel that rageful anger in my stomach when I am unable to do something I used to be able to do. It means not seething with resentment or bitterness when I see others who have similar injuries doing more than I am capable of with my own body.  Radical acceptance means, learning as much as I can, teaching others to do the same, and moving forward with my life.

Radical acceptance is way easier to talk about and understand than it is to actually put into practice in every moment of every day.  There are a ton of obstacles that come up to challenge accepting where I am at now. I do know that if I stop fighting all of this, eventually I will suffer less.

What Radical Acceptance is not:  It is not giving up.  It is not tolerating being mistreated or accepting a misdiagnosis. It is not stopping the ability to advocate for oneself or others.  It is not just accepting diagnoses as they are without researching the options thoroughly.  It is not giving up on caring about or speaking up for myself or others. It is not about being as silent as a church mouse in a corner with no thoughts and ideas of my own.  It is not about even….. being Radical (which some interpret as crazy, out of control, explosive, or some other such adjective).

Summary:

Coping with a polytrauma, traumatic brain injury, any type of grief, and loss really…. is ultimately a deeply personal and singular experience — nobody can know EXACTLY what you are going through.

There are many stages we all go through in our recovery process.  These stages closely resemble the stages of grief. There is no set time frame assigned to experiencing each stage, or a particular order in which we experience these stages.  Sometimes a person may never get to the Acceptance stage. This is however, the goal for myself.

Acceptance is often misinterpreted by others as the person being “all right” or “okay” with what has happened to them. This is not the case. Some people reach acceptance right away.  Most people though don’t ever feel okay for years, if ever. By achieving a level of “acceptance” a person is choosing to learn to live with their new normal self and move forward with their life.

It is not uncommon to repeat the various stages or be focused on one particular stage. Chronic pain can directly affect the way a person processes these stages as well.

 

(Over recent decades, a reasonable amount of data has been generated which suggests that greater acceptance of chronic pain is associated with fewer pain-related difficulties, such as distress and disability, and better overall quality of life (for reviews, see: McCracken & Vowles, 2014; Scott & McCracken, 2015; Vowles & Thompson, 2011).  http://www.bodyinmind.org/pain-acceptance/

 

About the 5 stages of grief:
In 1969, Elisabeth Kubler-Ross introduced the stages of dying in her book, On Death and Dying.
Before her own death, Elisabeth Kubler-Ross and her co-author, grief expert David Kessler adapted her well-loved stages for grief in their book, On Grief and Grieving.
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