5 Important Brain Injury Recovery Steps

Brain Injury Recovery Steps

Although the vast majority of people recover after a concussion (guess what? a concussion IS a brain injury)…….how quickly they improve, rehabilitate, and return to their daily activities depends on many factors. These factors include how severe their concussion was, their age, how healthy they were before the concussion, how they take care of themselves after the injury, and the resources provided to them regarding their aftercare/recovery process (this means being provided with proper directions, follow up, and educational information by good providers who know what they are doing).

Okay, we say “good providers”. I do want to say that brain science is changing and evolving on a daily basis. It may not be possible for your provider to know all the latest and greatest developments regarding brain injury recovery, so don’t be too hard on them. It is also difficult for the rehabilitation team of providers to know exactly how long a recovery will take, especially at the beginning. This is why it is called “practicing medicine” – not everything is certain or known. The more you know, the more you realize that once you’ve seen one brain injury you’ve seen one brain injury. This means that all brain injuries, and healing abilities from those brain injuries are different (even if they share similar symptomology). A “good provider” would be someone who advocates for their patient, or defers their patient to a provider with specialized training, or who acts as an active listener and guide through the recovery process (even if that means being willing to learn about new scientific breakthroughs and keeping up on their skills, and knowledge base around what they are treating you for). Is that clear as mud? LOL

Do not compare your concussion (brain injury) symptoms and recovery to that of someone else or even to any previous concussions you may have sustained. Each persons injury is different, and the symptoms of each brain injury(even when happening to the same person) may be different and require a different rehabilitation time as well.

It has been established time and time again that recovery is usually fastest in the early weeks and months after brain injury. In the first few weeks after a brain injury, swelling, bleeding or changes in brain chemistry and physiological aspects of the brain are often affected, and affect the function of healthy brain tissue. The fastest improvement usually happens in about the first six months after injury. During this time, the injured person will likely show a vast array of improvement and may even seem steadily be getting better. The person continues to improve between six months and two years after injury, but this varies greatly for different people and may not happen as fast as the first six months. It is important to note though that while improvements slow down substantially after two years….additional healing and progress may still occur many years after injury. Also the opposite is true as well. A person who appears to be recovered or rehabilitated may not experience affects or manifestation of their injury until years later.

There are some poignant things to keep in mind regarding recovery from a brain injury.

  • If you suffered from anxiety or depression before your head injury, it may make it harder to adjust to the symptoms of a concussion (brain injury)
  • If you already had a medical condition at the time of your concussion (such as chronic headaches or chronic pain), it may take longer for you to recover
  • Receiving another concussion before the brain has healed can result in brain swelling, exacerbated symptoms, permanent brain damage, coma, or death – especially in our youth. You should therefore avoid activities that could cause you to jolt, bump, hurt, or cause a blow to be made to your head.
  • If you are a woman (female) it may take you longer to recover and you may have more severe symptoms that your male counterparts.
  • Numerous Concussions (brain injuries) over time may cause you to have ongoing serious long-term problems, including chronic memory challenges, difficulty with concentration, persistent headaches, and occasionally, diminished fine motor/physical skills (such as keeping the ability to stay balanced or walk in a straight line).

After reading all this, the question presents itself as,

“Great! Then what things CAN I do to improve my rehabilitation process?”

After all, that’s why you are here to see what that burning question will reveal, right?!?!

Neuro Optometry
  • 1. Vision Testing –
    • I don’t mean like your typical eye doctor or optometrist/ophthalmologist that you would see to get your vision tested for glasses. or your glasses prescription adjusted. They don’t have the specialized training for the help you may need. I am talking about seeing a Neuro-Ophthalmologist/Optometrist (yes there is a difference). A Neuro Optometrist is trained to diagnose and treat neurological conditions that negatively impact the visual system. A Neuro-Ophthalmologist is a medical doctor that specializes in the diagnosis and treatment/rehabilitation of neurological conditions adversely affecting the visual system and specializes in neurology AND ophthalmology.
    • They specialize in visual problems that relate to the nervous system (brain injury, stroke, Parkinson’s disease, multiple sclerosis, and diabetic neuropathy). They help patients rehabilitate their vision with specific visual exercises/eye-training exercises that rewire the brain (neuroplasticity). These exercises can be done in the office during a scheduled appointment or at home with the aim being to reduce symptoms and promote visual recovery. These exercises are designed to improve balance, gait, visual information processing, cognitive skills, visual memory, motor skills, double vision, tracking/scanning problems, inability to focus, loss of central vison, strabismus (eye turning), convergence insufficiency, visual field loss, issues with depth perception, etc.
    • They may also, for some patients, prescribe specific optical lenses called prisms (prism glasses)
    • The treatment from this may last weeks, months, and for some patients – years.
    • See additional information about VISION THERAPY.
Auditory Testing
  • 2. Auditory Testing (hearing tests) –
    • Hearing issues are often overlooked in polytrauma patients because of other visible life threatening injuries that often take medical precedence/priority. However, hearing loss may mask or confuse getting a correct diagnosis for other injuries. Some patients have been diagnosed as being unresponsive or uncooperative when it was their hearing that was affected. Issues with the ear can result in problems related to balance, hearing loss, dizziness, vertigo ( the most common vertigo being benign paroxysmal positional vertigo), tinnitus (ringing in the ear), chronic nausea, and headaches. While some of these changes are reversible, others are not. This is the importance of getting auditory testing completed as soon as possible after a head injury.
    • Dizziness is believed to occur in 40-60% of people with traumatic brain injuries. The ear is also the organ that is the most susceptible to blast exposures. The extent of ear damage from a blast depends on a multitude of factors (size of blast, environment, distance from blast, orientation of ear canal to the blast, open or closed area during blast). The most common injury from a blast is a ruptured eardrum (tympanic membrane). There are also cases of traumatically induced Meniere’s Disease.
    • Hearing loss as a result of brain injury causes damage to the inner ear or because there is damage to the brain that produces sound. Auditory problems could be mistake for signs of cognitive deficits attributed directly to a brain injury. Hearing loss also exacerbate the social, emotional, and cognitive affects of the brain injury. It is possible to have cognitive affects related to brain injury AND loss of hearing at the same time.
    • Auditory symptoms may include difficulty understanding speech, especially when there is background noise; difficulty locating sounds (knowing where the sounds are coming from); hyperacusis (extreme sensitivity to sounds); tinnitus (ringing in the ears with no external source of the sound); conductive or sensorineural hearing loss ( damage either to the tiny hair cells in your inner ear – known as stereocilia, or to the nerve pathways that lead from your inner ear to the brain); distorted hearing, etc.
  • 3. Speech Therapy –
    • Brain injuries can cause speech, language, thinking, and swallowing problems. Speech therapists treat all these conditions
    • Types of issues treated are dysarthria (when the muscles you use for speech are weak or you have difficulty controlling them causing slurred or slowed speech that can be difficult to understand), aphasia (impairment of language, affecting the production or comprehension of speech and the ability to read or write), improving cognitive communication skills, and improving memory
    • Goals in treatment by a Speech Language Pathologist (SLP)/speech therapist is to help the person speak more clearly; express thoughts more effectively; improve problem-solving, planning, and organization skills; improve speech to make it clearer; reading comprehension skills; improvement of memory using various tools (calendars, notebooks, to-do lists, post-it notes, planner, white boards, etc); learn ways to swallow safely; work on social skills through reading and social cues, etc.
  • 4. SPECT CT –
    • CT and MRI scans provide detailed information on the anatomical structure of the brain. Brain SPECT imaging reveals the function of the brain by measuring blood flow. 
    • Functional brain imaging is not considered a stand-alone diagnostic tool.   While there are varying levels of acceptance among the neurological and psychiatric conditions, the science and technology have been research for decades and there are hundreds of published research studies utilizing SPECT for the evaluation of the various conditions.
    • See our article – SPECT CT
  • 5. Rest
    • Rest and proper sleep is very important after a concussion because it helps the brain to heal. Ignoring their symptoms and trying to “tough it out” often makes symptoms worse.  Physical and cognitive rest is often recommended, however this varies greatly depending on the health of the brain prior to the injury, as well as the force sustained.
    • These activities, patients are advised by healthcare providers to rest from after a brain injury include: reading, using a computer, watching television, playing video games, or working on school assignments. For many people, physical and mental rest until symptoms subside is the only treatment needed for a concussion or other head injury.
    •  During the first 24 hours, the brain needs as much rest as possible, including minimizing mental, and physical stimulation.
    • After 24 hours, if the injured is symptom-free, the injured person may begin the “relative rest” progressive protocol. Relative rest refers to avoiding any mental or physical activity that provokes the concussion-related symptom (for example if they participate in a physical activity and it increases symptoms, then stop that particular activity)
    • Each day a person can add more mental and physical exertion, as long as their activities don’t provoke any concussion symptoms. It is advised to avoid any strenuous exercise for a week or so. If you want to keep exercising, try to keep it light. If you’re a runner, for example, try walking. It’s also best to avoid any heavy lifting for a week. Moderate activity over the long term helps reduce effects of depression, feelings of isolation,
    • Regardless of the severity of your concussion (brain injury), you should be symptom-free before returning to normal activity, and your condition should be carefully monitored by your doctors.

“NEVER GIVE UP ON A HEAD INJURED PATIENT. – Recovery Occurs for the rest of a person’s life. Give people the type of treatment that they deserve. ~David Hovda, PhD

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Year of the SEVEN

Today is my RE-BIRTHDAY.  I am 7. 

That is seven years since the accident that rocked my world and changed everything forever.  Seven years since becoming the walking dead to the actually breathing and eventually living.

There is no culture in the history of the world and no religion where the number seven is not a powerful and positive number. 

The number seven is a number that represents and symbolize introspection, inner wisdom, truth, and the origination of life. It is said to represent security, safety, rest, and is considered lucky throughout our history and through many civilizations.

Seven is known as the number of total completeness and perfection – most often related to a spiritual direction, though the physical part cannot be ignored or discounted either. It derives much of its meaning from being tied directly to God creating the world, where the world was created in six days and God rested on the seventh day – creating the foundation of the seven-day-week we use to this day (for those that believe in that line of thought). The number seven is also featured in the Book of Revelation (seven churches, seven angels, seven seals, seven trumpets, and seven stars). The Koran speaks of seven heavens and Muslim pilgrims walk around the Kaaba in Mecca (Islam’s most sacred site) seven times. In Hinduism there are seven higher worlds and seven underworlds, and in Buddhism the newborn Buddha rises and takes seven steps.  There are also the 7 deadly sins (pride, greed, lust, gluttony, envy, anger, sloth) and the 7 virtues of the spirit (chastity, temperance, charity, diligence, patience, kindness, humility OR also known as faith, hope, charity, fortitude, prudence, temperance)

Most of us have even heard about the seven wonders of the world, so seven is special to the global community as well.  In fact, regarding every day life, studies have shown that most people can retain roughly seven items of information in their short term memory ( a real challenge with a brain injury let me tell ya). That is why phone numbers in the U.S. and many other countries tend to have seven digits (not counting the area code part of the number).

In fact, even when focusing on healthy sleep hygiene, it is recommended to get seven hours of sleep (less than five or more than nine and your risk for heart attack, stroke, angina, and a host of other non-restful issues increases).

Over the last seven years I have really learned to see obstacles and limitations as opportunities and a reason to really lean on HOPE and embrace faith and allow myself to BE hopeful.  To give permission to myself to accept a new type of paced existence.  But what does that REALLY MEAN…to have HOPE?

This does not mean that I was positive all the time. I can tell you that! Oh no, far from it.  See, HOPE does not necessarily equal optimism or positivity. Sure optimists are often more positive than those that are caught up in dark moments/thoughts, or with overwhelming feelings of defeat and depression when faced with a “new normal” where they literally have to learn everything again.  However, even the most pessimistic/negative person can have HOPE for things to be different or improve.  I can personally attest to the facts that there have been many dark moments/thoughts over the last seven years.  Yet being able to hang onto HOPE, hang onto the belief that I was here for a specific reason (even though I didn’t know what that was) and then making the effort to LIVE and embrace my life in every form it came to me in became my focus and continues to unfold as my reality.

This day is spiritually significant to me.  It is physically significant to me. This day is emotionally significant to me and I am pleased to be able to take another breath….to reach another goal……to live a new dream and embrace new aspirations and possibilities.  I am pleased to be guided by Faith, HOPE, and LOVE.  I am pleased to be able to FEEL pain, FEEL elation, FEEL defeat, FEEL supported, FEEL misunderstood, FEEL heard, FEEL sadness, FEEL happiness, FEEL lost at times, and FEEL accomplished.

I am grateful to be allowed to have an avenue to share my journey with all of you and HOPE I can offer some measure of HOPE for someone who may end up reading this today. 

So happy RE-BIRTHDAY to me.  This is the YEAR OF THE SEVEN.  The year I loudly embrace that special introspection, inner wisdom brought forth, speak my truth, and continue the celebration of life.  I accept what seven has to offer: security, safety, rest, and while pacing myself, cherishing how lucky I am to continue to rewrite my own history.  I open my arms to the Universe and to my experiences and hold hands with HOPE, while  living in the moment and looking forward to the future, while building on that visualization.

Grateful for another blessing and another opportunity to draw in breath one more time.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

9 Essential Resources for Migrant Workers Affected by COVID-19

Image via Pixabay

9 Essential Resources for Migrant Workers Affected by COVID-19

At Hope TBI, our mission is to offer guidance and support to those affected by traumas of any kind. This includes physical, mental, and emotional traumas sustained before, during, or after your migration to the United States — or as a result of the novel coronavirus pandemic. As such, the nine links below will connect you with the different resources that may be available to you amid COVID-19 — especially if you’re facing deportation, struggling to find work, looking for medical testing, or need help putting food on the table.

Medical, Unemployment Insurance, and Employment Resources

These three resources will help you to understand your rights as a migrant worker during COVID-19 — and find new work opportunities if you’ve lost your job.

Financial Assistance

During the coronavirus crisis, migrant and undocumented workers can benefit from the following financial assistance programs.

  • Explore the different immigrant response funds that may be available to you and your family during the pandemic.
  • Contact your state’s Social Services Agency to check your eligibility for food, cash, or child care assistance.
  • Locate a food bank near you if you’re struggling to put food on the table due to job loss or any other reason.

Legal Resources

Whether you’re facing deportation or need one or more legal documents translated into your native language, these three resources can help.

  • Visit Informed Immigrant to find a complete list of regional and national resources for immigrants during the coronavirus crisis. You’ll find resources on financial assistance, mental health, healthcare, education, housing, and more.
  • Look for top freelancers to help with everything from translating and understanding legal documents to handling the legalities of deportation proceedings.
  • Facing deportation but can’t afford to hire a lawyer? Look for free or low-cost legal assistance.

The coronavirus pandemic has been devastating for the U.S. economy, and billions of lives have been disrupted in one way or another. With the nine resources above, hopefully you’ll have all the information you need to find new work opportunities, get tested for COVID-19, obtain legal counsel, and make ends meet during this unprecedented time.

Submitted By:

Diane Harrison

Healthpsa.info

diane@healthpsa.info

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Thank you for visiting us! We look forward to hearing from you.

Call To Action for HOPE TBI

Thank you for visiting the HOPE TBI Website.

If you have found value in this Site, in any of the content, any of the stories you have read, learned any information that you didn’t know before, felt validated, felt hopeful, appreciated the vast resources provided, can relate to anything you have read, or listened to in these pages, then this is a Call of Action for you.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

REVIEWS and TESTIMONIALS

Vital Ability, LLC

This is a long time coming. I have finished my educational training as a Certified Holistic Life, Career and Executive Coach. I am specializing in Transitional Life Coaching, Brain Injury Recovery Life Coaching, and Disability Life Coaching.

I work with a diverse array of clientele from the general public – including medical patients, caregivers, providers, soldiers/veterans, business owners, executives, public officials, professionals, entrepreneurs, LGBTQ, parents, older Teenagers, and others from around the world through virtual connections.

 My training incorporates holistic coaching techniques, traditional coaching methods, Brain Based coaching, Ontological coaching, Emotional Intelligence (EQ) coaching, Neuro Linguistic Programming (NLP) coaching, and Positive Psychology coaching.

Also, I am pleased to offer Medical Advocacy Consultant services to those looking to have a bit more support on their rehabilitative journey. Please see the website to get more information on these different services.

www.vitalability.com

Learn more about Vital Ability in this Interview:

Vital Ability, LLC Interview

Please feel free to share this page with anyone you think would be interested. Thanks for supporting me.

I wish you are peace, health, and happiness. Let me know what you think and don’t hesitate to reach out. You are not alone. You are a miracle!!!

~Caren Robinson~

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

We Support Black Lives Matter

Some of our readers may think to themselves why is all this focus being put on Black lives…don’t all lives matter?

Saying Black Lives Matter does not mean other lives don’t matter. Not at all.  In fact, saying All Lives Matter (though coming from a good place for most who embrace that term) misses the crux of the Black Lives Matter movement.  Saying “All Lives Matter” pulls the attention away from Black Lives, who are the ones that are and have been heavily discriminated against for generations.

Black Lives Matter is a rallying slogan/anthem that speakes out about police brutality and systemic racism.  It calls for a shift in statistics where Black people are twice – three times more likely to be killed by a police officer while unarmed, compared to a white individual. As a nation we need to pay attention to all of our races and cultures equally and stop acting like Black Lives are devalued in some way.  Saying “All Lives Matter” diminishes and dsicounts the focus on the violence and discrimination Black individuals face every day. Black Americans are disproportionately impacted by not only police violence, but systemic racism.  By saying Black Lives Matter, we are saying that Black Lives Matter as much as White Lives.

We support racial justice and we support equality.

Examples below of the difference between saying Black Lives Matter vs saying All Lives Matter:

If you see someone’s house on fire getting destroyed, you don’t stand there and yell at the fire department to put water on your house that’s not burning because you have a house too. No, you focus on the emergency in front of you at that moment and give everything you got to save that house and protect the people in that house that is burning.

Giving attention to the burning house is not saying your house doesn’t matter. It’s not saying your life or all the other houses and lives in the neighborhood don’t matter. It’s saying we need to focus on what is burning right now and not ignore this fire because their lives matter too.

~compiled based on a comic strip by Kris Straub

If you see a person on the ground who fell and cut their knees open and they are bleeding profusely and people are trying to help put pressure on the wound to stop the bleeding until help comes….

You don’t stand there and yell at them saying “Hey I have knees too, in fact I have two of them – what about my help…what about my knees?”

No….you focus on the person that’s bleeding and needs that lifesaving help in that moment. You triage and prioritize.

That doesn’t mean that if you may injure your knees in the future or have injured your knees in the past that your knees don’t matter. What it means is that the knees that are bleeding now need the most immediate attention because those bleeding knees matter too – and are more emergent to take care of now in this moment….not just yours.

~Caren Robinson

 

Black Lives Matter!

THE_BLACK_LIVES_MATTER_MOVEMENT

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Thank you for visiting us! We look forward to hearing from you.

Down The Rabbit Hole during COVID-19

Brain Injury Radio Show

Kim and Caren discussed, reaching out and staying connected during this difficult time in our history. We discussed tips and ways to stay connected.

We took callers .. Interested in hearing how our listeners are coping with the “New World” and their thoughts, fears, feelings.

This show is a gathering place for anyone seeking recovery from the challenges of life on life’s terms. We discuss useful tools that have helped us lighten the load, of our journey through recovery. This is a “we” recovery program, because it is in the “we,” that we find the new “me.”

We focus on the four A’s of Recovery: Awareness, Acceptance, Action and Adaptation. This is a place for survivor’s striving to become thrivers, which takes a large dose of Warrior!

Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond found at inaflash.org & “Like” at facebook.com/inaflash.org   Co-Host is Caren Robinson found at: hopetbi.com

LISTEN TO SHOW HERE

 

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Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Be 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 Brian 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 HOPE'ster!

(right click on picture to save to your device or share link in above web browser)

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Three Years Today – Rebirthday Anniversary

happy-3rd-anniversaryI have been thinking about what to write today, January 4, 2017 for about a month now.  Here I sit trying to think of how to form the words that swim in my mind and express them in a way that makes sense to anyone else but me.

Today marks an important landmark.  A valuable piece of history worth honoring.  Today marks the 3rd year Re-Birthday Anniversary for Austin (my son) and I since the wreck where I became a survivor of a Polytrauma and TBI and my son seemed to have escaped physically unscathed by traumatized still the same.  We continue our journey still today. We both have come so far in 3 years.  I myself have met many goals, yet miles to go before I sleep….soundly that is *smiles*.

It has been an extraordinarily long journey through this whole recovery process….and still is. I needed an outlet. I needed to learn, to teach others what I had learned the hard way so they didn’t have to work so hard, to understand myself, to hopefully allows me to heal.

This page at posthope is strictly my medical story as it has unfolded and continues to unfold.  It is fantastic and I need to make an effort to get here more often.  I went through a round of blah there for a while.

I know though that I love helping people, I am just not able to do it in the way that I used to. I started a personal blog, which was so disjointed I couldn’t find anything when I wanted to, so with the help of my tech savvy husband he taught me how to use a very user friendly program where we changed the blog to a website so it was more organized.  This was very helpful and allowed me to find things easier.  The website is a work in progress that allows me to heal and help others.  I want to help other survivors cope, or caregivers/healthcare providers maybe try to understand what it has been like for our family so they do not feel so alone, or so they can develop different ways of doing things, of helping, of surviving.

HOPE was a word my mom hung up for me when I was in the hospital shortly after the wreck. I found myself so focused on that word that sometimes, all I could do was stare at it to get me through the day. I am unaware of the time frame that was wrapped around this. However, my memory makes it feel like it was a long time.

As time progressed it became the word I would include in my meditations, my prayers, and my self-talk to keep moving forward and never give up. To me HOPE became a symbol and acronym for “Hold On – Pain Ends”. The pain never seemed to end though and so this seemed completely unrealistic to me and not something I could honestly uphold. I struggled to think of something that would help me remember to never give up HOPE.

I also wanted to have HOPE represent my experience with all the medical providers, insurance processes, and developments and knowledge we had either been blessed or seemingly cursed with. I wanted to represent my journey as an ongoing recovery process, as that is exactly what it is. Days led to weeks, weeks to months and soon it came to me one day as I was in enormous pain that some of these providers were actually trying to help me gain my independence back and I was fighting full force to gain back what I felt I had lost. I needed so badly to excel…to move forward and move on with my life.

So was created ” HOPE TBI”

Help One Person Excel – To Be Independent

Hence this site was innocently started, and continues to evolve as I continue to as well.  I also now share other people’s stories as well as it is very healing to have a voice in some form and not feel so alone in a situation where you are surely to lose life as you once knew it….lose family….lose friends….as you adjust to your “new Normal”.  The folks that do decide to stick around…they feel alone too.  Their commitment to you causes their supports to move on with life while they remain with you PERPETUALLY FROZEN (look for this as a new post title soon).

This existence is not for the faint of heart.  It is not for the weak.  It is not easy.  I feel gratitude though for my life.  Grief and gratitude are constant bedfellows that have learned to coincide with each other.

Today I am reminded to reflect on not only all that was, but all that is, and HOPE for all that will be.  January 4, 2014 I was born again.  No, not in a religious sense.  However, I continue to experience a metamorphosis of epic proportions.  I continue to strive to embrace my “new normals” and function to the highest levels possible.  Thank you to all who have stood by me, believed in me and advocated for me.  Thank you for those who cared for myself, for my son, for the other driver (Greta) and made waking up each day seem possible.

My medical story

happy-rebirth-day

The Whirlwind of Change then add Anxiety

​The complexity of Change and how it affects my new normal.  I was inspired to write about this for several reasons. I may totally suck at expressing what is in my head here on paper or this screen, but here goes….

It is not all inclusive of every situation in my life, how I see people outside of me in general, how I exist inside myself, or how I handle stress overall in every situation….but it comes pretty darn close to kind of manifesting a picture of an inner struggle that is life as I know it now and my desire to overcome, understand myself, and help others who might experience this after trauma not feel so alone.

I don’t handle “change” as gracefully as I used to.    Change in general I have gotten pretty okay with, as a genral rule, if done in advance with plenty of warning or notice (unless it is something time sensitive and important then it is instant anxiety).  However I have come to notice that the little stuff…stuff that probably shouldnt even bother me, or wouldnt have before the wreck…does now.  Though that can be inconsistent too.

I know…I am consistently inconsistent.  Imagine how horrible this inconsistency is for the person going through it who now thrives better with lists, strategies, consistency….or order.

Sometimes last minute changes leave me feeling just gloomy, depressed, and sad. Sad is not my normal emotion with this. Mostly  it is being irritated …okay…highly irritable….when things change.  Following through the plan has become very important to my daily feeling of a successful day.  

I feel I cannot leave the house and feel calm  without my to do list (this can be mental or written…though more often it is written).  This list will be in a specific order too.  If things are done out of order, I get irritated or frustrated and the chance I forget something increases.   

Small things/changes that should truly be insignificant in the day that involves me personally, just are not that small to me…they can be monstrously huge in my perception at that time…in that instant.

I cannot explain the sheer anxiety that those little changes cause me now.  I used to not mind them so much before the wreck…I would definitely adjust quicker or maybe I just wasn’t aware of them at all…things that just cause hiccoughs throughout a normal day (whether they are small or large). Things that wouldnt slow me down…but now can seemingly paralyze me.

 Now though…it is so important to stick to the plan.  

If I analyze something afterwards…sometimes I realize it shouldn’t bother me  or that I am being ridiculous..or how I should have handled it differently….yet I plan my day based on lists and when those lists change it messes up my day….it throws me off course. 

I get that morose feeling when I forget things….it is usually appointments I forget and conversations…important things I am sure I will remember…it is humiliating.  I make lots of lists.  It kills the mood if I forget them. I am still working on adjusting to that part.

I have come to somewhat have a sense of humor about all this (this depends on what kind of brain day I am having for sure).  Some days are better than others. 

I recently had someone express it sounded like OCD or impulsivity. 

I guess I never recognized it as an OCD thing or being impulsive.  I have never had OCD in my life or been diagnosed with that ….maybe it is OCD or not OCD at all.  I just know it is inconvenient.

Sometimes if I get all worked up about something (positive or negative), get prepared for it, have all my notes ready, have all the pieces in place and it gets cancelled, or I am late and it gets cancelled, or it ran over and I am late to othet things….that is a real problem for me.  

If I am depending on a certain schedule that day and then realize too late that I have looked at the wrong day on the calendar….I sink into embarrassment and self-defeat and dark places inside myself. This can also manifest itself as a sheer and utter sadness, or complete internal rage.  I cannot tell you the times I have missed an appointment because I forgot about it (even if I looked at the planner 2-3 hours before that), or the opposite… shown up to an appointment early, proud of myself, to be told I dont have one that day. I have gotten better about checking my planner and my phone to compare dates and times, before arguing with the receptionist.  Dealing with the feelings after are another story.  Those emotions can very from feeling relief (if I was running late anyway and now get a second chance) to feeling confused and crazy ( if I am really quite sure about the day, the facts, and was feeling confident).

My husband will often accuse me of micromanaging his driving and trying to control his driving and what we do with the day.  I assure him that is not it at all or what is going through my head.  It is not about HIM. It is about ME.  For example, there is a certain way I go to specific places.  If he goes a different way it throws me off and then I get anxiety about being late.  (I DESPISE  being late to anything), or I feel a twinge of irritability that I have to silently or not so silently quell. Also if I gasp or make any sounds at all he is like…”knock it off I’m a good driver Caren when have I ever been in an accident?”  I tell him I am and was a good driver too yet accidents still happen.  I tell him if something is scary to me. I tell him if something is freaking me out….when things seem enhanced around me and magnified…sometimes just taking an exit ramp can feel like we are tipping over on our side and the wheels have left the ground and enormous fear overwhelms me and I have a deathgrip on whatever I can hold onto and beg him to slow down (even though the wheels dont leave the ground).  Even if I look at the speedometer and can “see” we are going an appropriate speed….it feels so different.  He doesnt understand that about me now and it has created opportunities for even the kids to get in on comments to mom about whatever is going on or join in on making jokes about it.  Other days he can take the same exit faster and it doesnt bother me a bit.

I go one of two ways with anxiety.  It is also depending on what kind of a “brain” moment I am in.  What I call  “enhanced” or “tunnel vision” with my anxiety.  Enhanced means that suddenly colors are brighter, lights are brighter, sounds are louder, I notice every movement around us, its intensity in minute ways. This can last moments to all day.  Tunnel vision is like when a car is sliding towards me and all I can see is that car and all the peripheral stuff disappears until the car stops sliding.  The sliding (whether it is continued or stopped), even if a slight shift in the lane or a flat out across the intersection slide by that car appears greater and larger….it triggers these deep emotions that are just automatic and overwhelming, and often debilitating emotionally, mentally, and sometimes physically. (That is when I feel overstimulated or burst into tears, and it’s time to go home NOW, or an unavoidable nap ensues, .or a meltdown…depending on how intense the situation is).

I then get annoyed or irritable  because I am genuinely upset or scared in that moment in the vehicle.  I literally feel like something horrific is about to happen or has happened. He tries to joke with me to make me laugh…I have learned to try to go along with that….but sometimes I just start crying instead and not even mean to…then I am mad at myself. It’s not his fault I feel this way. So being mad at him in those moments is not helpful.  So I am always analyzing my feelings, my reactions, my words.  Sometimes not until after the fact….which can cause some tense moments.

 Another example is I am getting ready to leave the house.  I have to do things in a certain way now.  Okay I think Bag, notebook, pen, planner, phone, charger, wallet, cane, and keys.  Sometimes keys comes first but that is the order .  Now if one of the kids, or my husband, or anyone, or a phone call interupt that mental walkthrough of the list, and I don’t start the list over…. then I ALWAYS forget something and if its the planner or the phone I am really screwed and it ruins everything about the day if I end up out there without them.  I really depend on all those things.  Even if I dont use them all on my outing just KNOWING they are with me and functional matters. 
  

Change sometimes comes with complex anxiety.  Sometimes it does not.  Little things can appear like big things and big things either matter or they don’t. Functioning despite all those nuances is the key.  Sometimes finding the right key to all those “locks” is the challenge.  I cannot explain it beyond that.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Michigan NO FAULT – Personal Injury Protection

michigan-no-fault-lawADVOCACY:

I feel it is imperative that I voice my strong and unequivocal support for the NO FAULT system and voice that I speak about this system from personal experience….not just opinion from a desk somewhere trying to increase our financial “bottom line” (like insurance companies want to do) without knowing or understanding the ripple affect of taking this much needed program away or altering it for the patients whose lives literally depend on this system being in place.

No Medical Limits For Life (no Financial Caps on  reasonable and necessary Care for injuries related to wreck):

I just want to say that here we are almost 3 years later and we are still discovering injuries acquired from the wreck.  These would not have been found and treated if it were not for the current No Fault System and my disabilities would have been much more extensive.

I never would have been able to get out of the wheelchair, or have the majority of the use back in my right arm without the lifesaving reconstructive surgeries in MN by Dr. Peter Cole. I wouldn’t have gotten the life saving Rib Surgery here locally by an Orthopedic Surgeon to plate ribs 5,6,7,8,9,and 10.  I wouldn’t have had access to all the Specialists I have see or been referred to.

I wouldn’t have received the extensive and ongoing Physical Therapy, Occupational Therapy, Speech Therapy and Counseling needed to help me Rehabilitate.progress

I would not have been given the majority of the radiology (Xrays, CT Scan, MRI’s, etc), EMG’s, EEG, and other testing; the Dental Repairs, the Vision Therapy, the Audiology Testing and Follow-Up Care, Case Management, etc.

I would not have been given Recreational Therapy and Vocational Therapy to help me return to some form of a quality of life.

Household Services (Replacement Services) and Attendant Care:

Without these things in place I would not have been able to come home to a hospital bed to be near my children and my family after NeuroRehab.  I was able to be cared for in my home where there was less chance for infection, higher rate of healing ability in a real world environment, by my family or caregiver of my choice.  I was more and more appreciative as time went on and it allowed me to be near my husband and my children and them near me.  A cap on Attendant Care would be Catastrophic for any Survivor.  There were some weeks that I needed 24 hour care 7 days a week.  Other weeks 16 hours of care then 14 then 10 then 6 then 4 hours per day seven days per week.  This continually varied based on what was going on with me.  I often used several hours a day 7 days per week after each major surgery.

Without this system in place.  I know for a fact, without a doubt, I would be dead 2.5 years ago now due to the Polytruma I sustained which included multiple orthopedic injuries and multi-system involvement.

There are a lot of  things that have been resolved.  There are some injuries I will have for life (like my back injuries, hardware in my body that may need replaced later in life, and various other injuries being cared for, etc.  I wake up every day….grateful for my life.  Grateful for the NO FAULT system here in Michigan.

I am the poster child of sorts about how the success of the NO FAULT system can work when given the care needed.  I will also add that if the insurance company did not fight this benefit so much, it would have cost less over time as I would have received recommended treatments in a more timely manner and not have had to suffer the debilitating chronic pain of unhealed fractures, nerve damage due to delayed treatment,  and exacerbation of other disabilities for the duration of time that I did.

I will also say that there needs to be an educational process in place for families and patients from the beginning on what is available and how to fill out paperwork properly etc.  This would eliminate a lot of challenges that present themselves by learning things the hard way.

I can say that I didn’t even know what NO FAULT insurance was until falling victim to this catastrophy and needing what NO FAULT provides to either live or die.

So What is Auto NO FAULT?  There are several states that have it….Michigan is the most comprehensive.

A Michigan no-fault policy provides unlimited medical  and rehabilitation benefits. It provides wage loss benefits for up to three years, and $20 per day for replacement services if you are injured in an auto accident, regardless of fault. In exchange for these benefits, Michigan motorists gave up the right to sue in auto accidents except when someone is killed
or very seriously injured. Because of this, disputes over who was at-fault in an accident will not hold up payment of medical bills. Michigan is unique in that damage to vehicles also falls under the no-fault system. This, too, saves time and money in claims payment. Michigan drivers must buy collision and/or comprehensive insurance to cover damage to
their own car.

The Michigan Catastrophic Claim Association (MCCA) was established in 1978. The MCCA
pays for claims paid by an insurer that exceed a certain amount. All insurers that sell auto insurance in Michigan must pay the MCCA an annual fee for each vehicle insured. That fee is known as the MCCA assessment, and is passed on in whole or in part to the policyholders.

The Basic No-Fault Policy Has Three Parts:

Personal Injury Protection (PIP) -If you are hurt in an auto accident, this part of your no-fault policy will pay all of your medical costs. It will also pay up to 85% of the income
you would have earned if you had not been hurt, for up to three years.

Property Protection (PPI) No-fault will pay up to $1 million for damage your car does in Michigan to other people’s property, such as buildings and fences. It will also pay for damage your car does to another person’s properly parked vehicle. It does not pay for any other damage to cars.

Residual Bodily Injury and Property Damage Liability Insurance (BI/PD)

What is an Assigned Claim?

The State of Michigan established the Michigan Assigned Claims program in 1973 to provide assistance to people injured in an accident involving a motor vehicle, when there is no automobile insurance available.

The Secretary of State managed the Assigned Claims program until December 17, 2012, when it transitioned to the Michigan Automobile Insurance Placement Facility.

The state of Michigan provides a safety net of insurance coverage for no-fault (PIP) benefits in situations where a person is involved in a car accident, but there is no insurance company available to provide no-fault benefits.

The name of the safety net is an organization called the Michigan Automobile Insurance Placement Facility (MAIPF), formerly known as the Michigan Assigned Claims Facility. The Michigan Automobile Insurance Placement Facility (MAIPF) is considered the insurance company of last resort.

The Michigan Automobile Insurance Placement Facility (MAIPF) administers the Michigan Assigned Claims Plan, which sets out the procedures for ensuring that Michigan No Fault benefits are provided to uninsured auto accident victims.

The Michigan Automobile Insurance Placement Facility (MAIPF) does not apply to a person driving an uninsured car that is owned. However, if an individual who doesn’t have auto no-fault insurance is injured in a car accident in a non-owned vehicle, and if there is no other insurance company of higher priority, then the Michigan Automobile Insurance Placement Facility (MAIPF) would provide payment of benefits.michigan-no-fault-law

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

My Life – The Ultimate Cul De Sac

9b9089ac-5a2c-4bf5-a5c2-3ac1c36b89eaMy life has been enormously eventful since my last post.  There is a lot to catch you all up on.  Many days have passed.  I sat here staring at this screen trying to decide what to write, how to tell what I was going through, what I was feeling, thinking, experiencing.  The words just weren’t there.  It felt redundant and repetitive.

I thought…really Caren, who really reads this anyways?  What is the purpose of writing and posting, and keeping this going.   It is something I pondered for a long time.  I mean here I am back from the brink of death, more than once even and what can I offer my family, my friends, those who follow these posts, those who may come here to see how things are going?  I can pretend to be positive and progressive and optimistic…but the reality is – I have been depressed. Feeling overwhelmed.  Grateful, yet in many ways disappointed.  Yet, in other ways completely neutral perhaps even apathetic.

What was this numb feeling?  This path that took me down a side road with various cul de sacs that made me feel like I was disappearing within myself.  The reality that with improvements and increased abilities which are uplifting and exciting….there also comes the awareness that once I feel I get to the end of one dead end road I am forced to turn around and head back out to the main road of my life and face the realities of my limitations and seeming roadblocks that prevent me from moving on.

This.  This here is where I find myself drawn back to. Writing, sharing, purging. Giving what I have learned to the Universe beyond me.  Hoping I make a difference in some small way.

Each day is a reflection of improvement and as I look in the rearview mirror of my body, I see the rubble.  I feel the dings and dents it has left on me. I have been rebuilt in a lot of ways.  Though I have a few misses here and there and everywhere – I am also looking at the road ahead and where it can take me.  I try to avoid those emotional cul de sacs that pull me off of my path in various ways.

So here I am.  Facing the inevitable.  Facing my own mortality with each spasm, bump and grind.  Facing the future with uncertainty and grateful….ultimately….that I am here to continue this journey.

This is my life.  My new normals.  Yet at which point do they stop being “new normals” and just are who I have been becoming the last nearly 3 years.  This is my life. My life is not based on imaginary twists and turns.  My life is based on a True Story.  My life…the ultimate Cul De Sac.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Site Owner – Caren Robinson

Hello there. I am a polytrauma and TBI survivor. I acquired mine from a wreck (head on collision) where my seatbelt failed and I was ejected (see Frequently Asked Questions page for more details).

I for a long time, felt it wasn’t important to “show” a picture of who I was.  I have gotten lots of requests for this though. I realize people want to see a “real” person. I wanted and still want… the site to be something that could be relatable regardless of what a person looks like….because after all…TBI is often invisible. So are most bodily trauma’s once the bones heal. Yet this is NOT the end of the healing process.

 This website is a growing passion for me with the more I advocate for myself, learn about myself, and learn about others experiences. This website is an outlet for my continued healing, rehabilitation processes, and a way to share what I have learned with others.  Helping One Person Excel I truly believe…begins with who I see in the mirror each day – Me.

To Be Independent is always the goal….yet that comes with a lot of dimensions and levels of intricate obstacles.  I hope that you find something in the pages of this site that help you, or someone you know.

If you’d like to share your story, or offer a guest blogging post …that would be amazing. Your story matters. Are you a Survivor, Caregiver,  Family Member, Healthcare Provider, Friend, Employer, Co-worker?  Whether the person is living or deceased…their story still matters.

Feel free to ask me questions in comments below or in email at hopetbi4ever@gmail.com I will answer as honestly and as directly as possible.

Dusty Roads

What is a typical day? I used to be able to tell you this until January 4, 2014. That is when everything that became typical about my life, my health, my existence, became consistently ATYPICAL.confusion

I feel like a Turtle walking around in a hollowed out shell moving slowly and hoping I can make it far enough and long enough to get to where it is I am heading. Where is it I am heading? That is a great question. I often forget the answer as I am heading in so many directions at once on so many different levels….even if I am sitting perfectly still and quiet.

HOPE can only get you so far. I try to hold myself back from the dark abyss of resentment and emotion that try to pull me over that cliff of depression that reminds me of all my limitations, injuries, pain, and I feel robbed. I am robbed not only of my function, endurance, memories, peace, and joy. I feel robbed of opportunities, freedoms, laughter, and just simple existence.

I guess all my new normals that are no longer really new….yet new enough to feel like fresh wounds with salt dripped into them on a daily basis are who I am now.questions

I wake up sometimes more tired than when I went to bed. Sometimes I wake up ready to conquer the world only to be exhausted by the time I muster enough energy to actually get dressed or to take a shower. Then other days I am blessed with a full day of accomplishment. I actually get out of the house and make my way through the world ignoring all the struggles that seek to slow me down (pain, confusion, forgetfulness, dashed joy, excitement, fatigue, bathroom breaks, sadness, and the seeming lack of motivation for life all at the same time).

What is a typical day? The only typical day is that I know I will face…..is a mountain of uncertainty. Will I have an accident? Will I forget something important? Will I be late? Will I remember to use my words and respond instead of just reacting emotionally? Will I get everything done I have put on the list? Where is the list? Did I make a list? Where is my planner? Where is my phone? Where is my charger? Where are my shoes? okay let’s go….oh crap, I forgot to put on pants. Okay pants on now…wait where did I put my bag. Do I have my planner, my phone, a pen? My charger….wait…gotta pee…okay flush toilet wash hands phone rings get planner talk on phone …kids talking “mom mom mom” wave them away finish on phone….head spinning I have everything right? Feeling irritable already. Oh no I read the time wrong now I am super late. I totally need help here feel like I am drowning. Feeling flooded and overwhelmed or not just yet but feel it coming on. Try to avoid it. Deep breathing, Relax. Husband asks if he can help or he doesnt ….kids a distraction or they aren’t. Okay let’s go…wait I need to have water with me. Man am I thirsty. I have to remember to take my meds. Okay do I need meds now? What is my pain level? Lets skip pain meds I can do it. Oh my gosh what was I thinking? I have to be somewhere but I can’t put my finger on it. What was I doing? Where am I going…I don’t remember. I look at the white dry erase board what is today? I cannot remember what day it is. Look at phone. OH okay…I have it now. Oh no I got my days wrong I don’t have appointment today….wait yes I do I looked at the wrong day. Okay lets go. What am I forgetting? It feels like I am forgetting something. Where’s my list of questions for the provider? Where is my List I know I had a list….oh that’s right I forgot to do the list because I fell asleep. Okay out the door, let’s go. Get in van, let’s go…. pat pockets for phone; crap – muscle spasm; damn this headache, I will be fine. I feel like vomiting. I am a passenger n vehicle and moving now….crap I left my bag at home with my planner. Panic what do I do? Focus, look at phone distract yourself. overwhelmedYou are safe. It’s okay. No planner can’t go back or will be late. Have to have planner MUST have planner. Panic ensues or it doesn’t. Go get planner or skip it if running behind which is often even if ready to go early. Leave without planner day ruined. If leave without phone feel lost and alone day ruined. I have alarm reminders and email and ways to communicate with people if I need help with something. In vehicle “no don’t hit us” *car swerves in our lane or slams on their brakes or gets too close to us”. Oh my gosh I cannot wait to get home. Okay I can do this. Quit wimping out Caren push push push. You can do it. Not so bad right….oh crap another muscle spasm. I am really hurting today or not really hurting as much. I am happy but so worn out and I haven’t even done anything yet; or I feel great and then someone zooms in front of us or we see someone almost wreck or act crazy…instant fear and nap time to escape brain shuts down I am done. NO! I have too much to do. NO sleeping. I am sorry I didn’t mean to fall asleep. Are we there yet? Thank God I did it. I knew I could do it. Why can’t I get anything right? I hate forgetting so much. Slow down. I want to go home. I feel like crying every little sound is annoying. Talking is annoying, the wind when the windows are down is annoying. Man my back hurts, my neck is killing me. Wow my shoulder feels better since surgery now…I love those people. I think I am going to cry I am so happy my shoulder is getting better. Oh my gosh how will I get through this day. I am already running low on energy. Wait…where’s the bathroom. I have to go RIGHT NOW….great a piddle I hope noone can tell. Did I bring extra underwear? Oh yes I did…. get relief or no I didn’t shame lingers. Good morning world I love you or I can’t stand any of you at this moment and I don’t know why. Shhhhhhh not so loud the lights hurt my eyes. I am okay. What? You want me to answer what question? Yes I am okay. Why are you staring. I don’t care if you stare I am proud to be alive or man I can’t get away from the pain to I just can’t stay awake I am sorry I AM DONE…my brain is done. Can we go home now? Think Think Think what was I doing? Oh That’s right, smile act normal. Stay quiet or not so much. Wash rinse repeat every day.

Some days are a blessing. Calm quiet, no appointments, no need to think, no need to go anywhere or do anything. Time to sleep to recover from the days I was just existing.

damagedSo I focus as much as I can on researching myself learning about how to get my quality of life back leaving no stone unturned. Yet some days defeat wins a round and I cannot even get out of bed to get dressed. Sometimes I am hurting so bad the tears flow and I cannot stop them hard as I might.

I feel defensive like I have to try and explain why I am late, moving slowly, hurting, forgetful, struggling in some parts of my day and not others, yet there is nothing to defend. I feel like I have to explain everything as I go to educate others when they just don’t understand. That is not my job. What is a short answer? I don’t even know really anymore. So I just say it’s a good day to be alive.

I detest being late. I detest even more forgetting things. Important things. Conversations, appointments, easy things, important things. Why can I remember some things and not others. Why are there so many gaps. It is what it is I keep telling myself. Apply your strategies Caren. I can be vicious with my words and equally as generous. I can be brave and fierce and face the pain or I can crumble like a wadded up piece of paper. The only thing that is consistent is my inconsistencies.

No, it’s not fair, it’s not productive, it’s not ideal. It’s not easy. Yet it is an opportunity to appreciate life in a different way and I am constantly caught between never giving up hope and just not giving a crap anymore. Sometimes the fight to recovery is just so painful and long and lonely and utterly draining. Sometimes you just feel like damaged goods overwhelmed by trying to not forget all the things that are important to make it through each day. Sometimes each moment. Then it passes and all is well with the world again…for just a little while.  I talk yet noone hears me.  I listen but their mouth moves and I don’t hear their words.  Never the same.  Nothing can explain it.  A different language or no talking at all.

The journey on these dusty roads are not without exhaustive effort. Hard as you try to keep lostfrom getting dirty you are bound to have accidents, forget important things and be late to things. If there is one lesson to be learned in all of this – it is to face your fears and do not let them eat you alive. Forgive yourself for forgetting and remember that you know you better than anyone else. Sometimes invisible effort. Sometimes invisible limitations. Sometimes invisible pain is more painful than the fractures that resist healing and like those fractures need added support. My goal is to pave those dusty roads with healthy recovery and continue to use tools to survive with. I am not stupid by far, just different than what I once was. So I will mosey on along like the turtle….. slow…. to control the pain and thrashing muscle groups. Slow so I respond and not react. Slow so I can gather my thoughts. Slow so I can hold on to what I need and release what is not effective. Slow and steady wins the race. Isn’t that the ending?

Damaged goods? I say yes. Destroyed? I say no. Fight or flight? Let’s get those wings!

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Thank you for visiting the HOPE TBI Website.

Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

https://hopetbi.com/reviews-and-testimonials/

Your input is important to the development and growth of this website, and we like to know what is going on out there in your thoughts.

Thank you for visiting us! We look forward to hearing from you.

Pomp and Circumstance

Well.  Good morning.  Here I am the day after the 4th of July -Independence Day.  This day holds special meaning for me every year because what it represents. 

In the United States, this date commemorates the adoption of the Declararion of Independence on July 4, 1776 by the Continental Congress making a declaration that the 13 colonies regarded themselves as a new nation, and no longer part of the British empire. They declared themselves as The United States of America.

I have always associated this time of celebration as a time to remember all that was accomplished during that era.  I also associate this time with fireworks, freedom, grilled food, potato salad, red white and blue clothing or apparel, picnics, and giving focused homage to our flag.

 Well, each year since the wreck has been a bit different for me around this holiday. 

In Jul 2014 I was at home in a hospital bed after 3 months in the hospital….so…6 months post wreck and all I really remember from that time is lots of sleeping, lots of pain, and the last time we were together as a whole family with almost all the kids….and did I mention LOTS of pain and not being able to breathe well. It was a rough time.  Just the sound of fireworks scared me.  Suddenly my beloved holiday was somehow tarnished and I had been forced beyond my control in losing my Independence.

July 2015 I forced myself to go see fireworks with the family…mostly for the kids’ sake.  This ultimately was great for the kids, but I paid dearly for it with my health.  I did not react well internally with ALL the people….it was too crowded, it was too noisy, and the loud exploding booms which I had for my whole life associated with happiness….now frightened me at a core level.  I was hurting, it was hard to “look up” and I literally was biding my time in anticipation of getting back home where it was quiet (at least in my room) and safe.

July 2016.  I have learned my limits and am learning that even some of our family traditions have changed in some ways as part of our family’s new normals as well.  This year…I decided to stay home.  Away from the crowds, the noise,  just everything.  I don’t regret it and was glad to hear about the crowd craziness I missed.  Next year..  I can try again.

Anywayyyyyyy…

I survived 3 pretty intense orthopedic reconstructive surgeries in the last 6 months.  I feel like I have been given a very special gift….Independence.  So my rehabilitation journey continues and I am learning to say no thanks on behalf of me…
So for all of you out there struggling to get through each day….for all your mini accomplishments and for each breath you are able to take…..take care of your health…even if it means breaking traditions or doing them differently. You are a new nation with your new normals….

Happy Independence Day!!!

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Cinco De Mayo 2016 : Caren Robinson

Cinco De Mayo (May 5th) is the date that is observed to commemorate the Mexican Army’s unlikely victory over French forces at the Battle of Puebla on May 5, 1862.

Much like Cinco De Mayo….my recovery and rehabilitation processes have had numerous UNLIKELY VICTORIES!

So it is ironic, and while tragic – also beautiful that my proposed final surgery on my shoulder/scapula/Acromion process was on May 5, 2016. This was the surgery that would also give me MY independence…..from an orthopedic (arm/shoulder) perspective anyway.

Now…to just wait until my follow-up appointment on June 1st to clear me for the Physical Therapy Regimen (exciting stuff).

I continue to be in awe of Regions Hospital and Health Partners system of patient focused care there in St. Paul, Minnesota. Perhaps because my providers there have been so instrumental in being so responsive and progressive in numerous aspects of my care, and continue to be.

On May 5th I underwent the final surgery on my shoulder (hopefully forever) to plate my Acromion Fracture which had gapped and was not healing. This was an unprecedented surgery for my orthopedic surgeon who has a niche in that field specializing in scapula injuries. He stated that the type of plating and procedure during this surgery for the Acromion Reconstruction nonunion fracture he had not done before, and that this repair was in the top 1-2% of complexities despite having an International referral practice for such injuries.

So I want to take the time to thank the folks involved in my care and surgery while in MN this time around. I tried to take diligent notes. If I missed someone, it was not intentional and I appreciate you just as much.

It all begins with how you are welcomed. When you walk into Regions there is ALWAYS someone there to welcome you and ask if they can help. It makes you feel like they are actually glad you are there…..it’s a great feeling when you are full of anxiety about your visit. It kind of preps you to just go with the flow…so to speak.

To Lonnie and her coworker (nurse that brought me back to preop from waiting room); Aneshtesiologist Dr. Mike Scmid and his nurse Anesthetist Marlene; Pre-op nurses Beckie, and Jackie…..and let’s not forget Lynette F who FINALLY got the IV started successfully; Amelia (who cleaned the surgery site); the Orthopedic Fellow (or Nurse don’t remember) Kyle you guys are all amazing and helped me relax before taking that final plunge to the Operating Room.

To my Trauma team in the Operating Room, including Dr. Peter Cole, THANK YOU for making me better and keeping me alive. I know I am a difficult and complex case. You never gave up on me or dismissed me, or made me feel embarrassed about anything. You are amazing and that is not even a strong enough word to describe your abilities and how much I am truly appreciative.

On the floor the first Nurse I had was named Mike. He had dark beautiful hair and a gentle spirit. He was very attentive along with his PCA Sandra “Sandy” and Bretta the respiratory therapist. I also want to thank Aron for my first meal after surviving surgery. You are a gem. I want to thank Annie for the Aromatherapy and appreciate her professionalism when I did not want her as my nurse due to my January experience with her. I didn’t immediately remember her name…but did her face and voice. Upon reviewing my notes I realized why she was familiar. I want to thank the Charge Nurse of the floor who was a patient listener and got me another Nurse who was awesome to deal with; I want to thank Katie from the lab; and Chian from transport (super nice person who has a relatively thankless job); I also want to thank Amanda, Tim, and Chris from Xray; Dr. Spilseth the Intern who checked in on me in my room; Thank you to Rachel my nurse and her PCA Uniqua; Jennifer from admitting who had the questions about insurance; Kjirsten the Social worker; Brent and Vic from OT and Meghan and Jenny from PT; a thank you to Kidist as well.

I had many wonderful nurses. The list of names was hard to keep track of….I do want to also thank Diana as well along with her PCA Logann (who ran ice packs for me and I am sure was tired of coming in my room); Logann, Dianna, and Patty who replaced Dianna on her shift. I appreciated the rounding from Dr. Hole. I also want to thank Leah and her nurse trainee Sarah and Logann again (yep got me again !); Scott from RT – thank you for checking on my pulse ox and CPAP; Tim and Jessica who did my CT Scan, and Aric from transport…vroom vroom; thank you to my Nurses Netti who took my vitals and said my nurse and pca (Shelly and Lisa) left (without giving a bedside report); thank you to Ketih and Karen; Lynn Charge Nurse and Night Charge Nurse Melissa;

Thank you also to Shelly my nurse and Lisa her PCA (who kept getting Shelly and later Shelly would say that Lisa never got her once and was apologetic) who were late getting me my post op pain meds by over an hour and taught me how much resilience I really have in this tired body.

Thank you to my nurse Melissa and PCA Jonase (spelling might be wrong on this one)…Thank you to Mai, Kaitlyn Schoeck 2nd year Resident and Jocelyn who worked tirelessly to get together all my take home paperwork; Thank you to Marcus Mittelsteadt 2nd year Resident, and the unforgettable Germaine from transport (what a selfless and patient soul) to medical records, and then to the Hotel Bus waiting for us upon departure from Regions after all was said and done.

A special thank you also to Tina Most and the CARE Team as well. 

Dr. Cole, thank you for visiting me in my hospital room on Mother’s Day (and a Sunday no less and your weekend off).  It meant more than you know.  You sat down and explained everything.  You rock!  You are an Orthopedic Genius.  Blessings Abound for you and yours I am sure.

Source: Cinco De Mayo 2016 : Caren Robinson

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Encouragement

Never Be Ashamed of A Scar.

It Simply Means You Were Stronger Than Whatever Tried To Hurt You…..

Time and Time Again

Well.  Do we have a LOT to catch up on.  No I haven’t dropped off the face of the Earth somewhere.  Though some days I do feel quite invisible…but that is another post entirely.  Trying to keep things real and authentic here and in my mind I have written each update a million times and nothing I felt I could say here matched what was in my head.  So tonight, I was just like….well…to heck with it – just be out there with it.

We miraculously by the skin of out teeth made it to MN.  We still have not been properly or fully reimbursed for our January, February, or March trip.  This has been financially debilitating to us, however, that is not what I want this blog to be focused on.

What I do want to keep the focus on – is the progress and new medical developments that I have encountered, am learning about, and am hoping may help one of you out there in some way.  Perhaps someone you even know or have known or will know at some point and time.

So I admittedly have been depressed.  On February 5, 2016 I had a PT appt at home.  I then had a PCP appt after that.  Well, my husband was helping me get dressed, like he has done so many times before.  I laid my arm on his arm so he could help get my shirt on me and we heard the loudest POP or CRACK I have heard from a body part.  It instantly shot pain up the side of my neck and to my ear.  Then strings of pain across my R chest and into my back some.  It was dreadful.  I couldn’t put my arm down and the pain was IMMENSE.  At my PCP’s office she checked me out and reasoned with me that since it “felt” palpably okay that it was most likely recovery pain.  I told her it didn’t feel right.  I had even called MN that same day on the way to her office to leave a message for Dr. Cole (my orthopedic surgeon). It was on a Friday and since we were going to be in MN on that next week my PCP opted not to xray it.

Well we went…and bottom line is that POP was a BONE being FRACTURED…..a horrible sound I might add.  I had apparently fractured my Acromion process (top of my shoulder).  Now based on what Dr. Cole explained this was rare (from what we read with our online research – only like 7%- (of course this is rare I thought). He had an xray and CT done.  I will say that I have come to realize that xrays have not been incredibly diagnostic for me all along. For some they are better and some they aren’t – me well not so much.

So what did that mean.  Well it was aligned for now and I had to do absolutely nothing with it until my next appointment in March to hopefully give it time to heal.  Start the protocol all over as if I had just gotten out of surgery.  I will say the pain was horrible….but different than shattered pain.  I would also say that I am being very well acquainted with a multitude of pain experiences and each have their own level of challenges and differences.  How I moved before the scapula surgery that would give me some relief here and there did NOT work for this fracture.  I was petrified for it to get separated.  If it did get misaligned that would mean potential surgery…This time on the Acromion.  We were super super cautious and eventually the neck pain, chest pain and such receeded back into the center of the top of my shoulder to remind me just how broken it was OUCH.  But hey… progress is progress. Oh and PT and OT got put on hold.  NO Chance of geting that misaligned.

It was a LONNNNNNNNG several weeks.  We saw Dr. Cole again on March 16th and this is where we learned  That gosh darn fracture hadn’t healed yet and was separated a bit…not by much and he debated just going in to get it repaired and plated while I was there, however it did show bone growth, even though still quite painful and limiting.  My head of course was swimming with information and questions that I didin’t seem to be able to get out the way I wanted – so I just listened – not really getting it yet.  He decided to cancel the April appointment and then set an appointment for May 2016 to give the body time to do what it appeared to be doing ever so slowly – trying to heal itself.  That meant however, no weight bearing at all with my right arm though I could begin again with PT conservatively.

So in May we find out whether I stay for a bit to plate this bad boy and fix it for good, or whether nature has taken its time, but actually healed it properly.  That appointment feels like its lightyears away.

There is actually some awesomely good news in all of this though.  There is a LOT less pain in my scapula.  Like it is miraculous how much he helped me with those January surgeries so I have utter faith in this man – even if I do have to have another surgery I know….like truly know he will make it better.

I am still quite limited but that will just take time and lots of therapy to get my strength back up.  We don’t know how much of the nerve damage will remain, continue to affect things, and all that stuff.  Time will tell.  I will say that it just flooded me like

REALLY MORE BROKEN STUFF!!!!  It was a lot to absorb and focus on in a positive way.  After a while, even though I know things were feeling different in some ways and better…..they were worse in other ways and status quo in yet other ways.  Also fighting with Insurance to get basic quality of life and such should not be a constant fight and battle.  This just adds to the stress and I truly believe slows the healing process because now you are always focused on that next ball getting dropped by them….it’s distracting, annoying, and is something that needs reformed for sure. That’s my soapbox on that though.

So here we go.  Working hard to stay afloat.  Not just financially but in the dynamics of our relationships with each other in the house.  The trips are hard on my body and my brain.  I think I am going to end up with the back pain for life.  The headaches are crazy consistently unrelenting and so mch a part of me now that I don’t remember when I last never had one.

I feel so flooded and overwhelmed after I get home fro travelling that  I literally crash out and sleep like I haven’t had sleep in days.  Going each way usually takes me a few days to play catch up with my already seemingly dulled self.  There is so MUCH stimulation that I was never aware that I was aware of before.  Travelling def makes a difference.  I have totally decided that travelling by train is much less intense than by Plane.  Still tons of people and still tons of noise and activity, but we get our own room which helps quite a bit with trying to get a grip…..and it is way more economical.

We keep moving forward….making impossible choices….going with the flow Time and time again. The future uncertain, but glad that I am still here to have a future to be uncertain about…..

So sorry for the delayed update – more posts to come…..just been battling exhaustion, pain, fatigue, and a good dose of BLAH!

Article – Time and Time Again by Caren Robinson

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Please take the time to make a comment, share your thoughts, and tell us what impacted you the most and what brought you here:

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Scalpel At The Cross

This is how amazing my Orthopedic Surgeon from MN and his team’s are. He is the one who jus completed two surgeries on my scapula and reconstructed it with a bone graft.

They truly care about their patients; and I am a growing strong advocate of their work and care as a whole both State Side and Away….

Minnesota technology team helps St. Paul surgeon’s Peru mission

 

This is the charity Dr. Cole and his wife started:

Scalpel-Logo
Scalpel at the Cross

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Thank you for visiting us! We look forward to hearing from you.

Surgery Update 2016

The two surgeries are reconstructive procedures for the nonunion scapula fractures (shattered unhealed scapula I have).  The surgeon has done many of these types of surgeries involving complications of scapular fractures, nonunions, malunions, delayed treatments, etc.

The current proposed plan is a 2 stage surgery. The first will involve cleaning out the nonunion site and obtaining bone and soft tissue cultures to be sent for bacterial analysis. He will then place antibiotic beads and then after 5 days in the hospital he will then do the grafting procedure from the iliac crest (pelvis).  Waiting that duratino insures a steril environment for him to perform the bone grafting procedure and place the foreign body implants.  The second surgery also includes correction of the instability and the malalignment of my shoulder blade. Stainless steel plates and screws will be used in addition to the bone grafting.

The track record for these surgeries is well documented in the literature, of clinical research coming from his practice. He feels the outcome is estimated to be between good and excellent regarding this injury.

Afterwards there will be about 3 months or so of Physical and Occupational Therapy.

I am looking forward to having use back of my right arm with full range of motion. I am looking forward to managing this ongoing debilitating pain and miserable aura.

Godspeed to the hands of the surgeon and his whole team that are making this possible.  Godspeed to my husband who will be by my side throughout this ordeal.  We have to travel out of the State as Michigan – as Michigan State does not have any surgeons who do this specialized procedure.  The kids are already getting anxious and prepared.  Rick and I are stilll trying to wrap up loose ends before we have to go.

Intense stuff, however opportunities full of HOPE.  Help One Person Excel – To Be Independent.

Thank you all for reading this, being a support and following our process.  Please feel free to leave comments below, or share this post on your social media.

Blessings Always.

Caren Robinson – Polytrauma Survivor

TimeOut MN

(Note:  The picture on this post is the actual hospital where I will be having my surgery.  They implement several safety steps during the surgery process – this is very encouraging to me)