New Page Created –

Hello my fellow HOPEsters. I am so very excited to introduce and offer some additional and new opportunities and resources to bring awareness about brain injury and polytrauma to our followers, supporters, advocates, and new HOPEsters on a global level

Can you believe we have been around for 8 years now?

While we will continue to offer all of you many free resources here at HOPE TBI, including relatable content through an active Blog, numerous resources, our tireless research on various topics, an evolving informational podcast, networking opportunities, and help in creating and e-publishing your stories – we are now also offering some other additional options as well.

We have partnered with Vital Ability, LLC to bring you even more options here at HOPE TBI.

(*** DRUM ROLL PLEASE ***)

We are now able to offer informational workshops tailored for your organization, group, class or event.

We also are now able to offer supportive services at an elevated level through our new medical advocacy consultant services with monthly memberships. at a considerable and affordable option for those interested in a bit more than what we offer for free.

Check out our paid services page under the “About Our Site” tab at the top of the page on the left (first tab on the menu list if looking at this from your mobile).

Let us know what you think check out the page and let’s see those messages start flying. Help me welcome Vital Ability, LLC as a partner.

Paid Service Options

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: 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.

Progress In Canada Halted

Hello to our neighbors in Canada!!!

Phonomenal and groundbreaking news that had been spreading like wildfire there since May 2021 and then again in November 2021 – only to be met by disappointment and seemingly caught up in global financial politics and escaping what the focus should be: benefit of rehabilitation for the patients.

In a major development for brain injury survivors across Canada, the Canadian Association of Nuclear Medicine (CANM) adopted, ratified and endorsed Guidelines for Brain Perfusion Single Photon Emission Computed Tomography (SPECT).

Essentially, what this means is that the SPECT scan is now medically recognized for the diagnosis and prognosis of traumatic brain injury (TBI). The SPECT test shows in much clearer detail the presence and extent of the brain injury (especially mild TBI), something that MRIs and CT scans cannot.  See this article

Then the Ontario Superior Court of Justice released an important decision in Meade v. Hussein, 2021 ONSC 7850 regarding the use of single-photon emission computed tomography scans (“SPECT scans”). Justice Bale found that SPECT scans failed to meet the reliability foundation test for novel scientific evidence. See this article

This is of global interest and has the potential of benefiting millions of people affected with brain injury. It was noted that the the Canadian Association of Nuclear Medicine (CANM) unanimously adopted new procedure guidelines for brain single photon emission computed tomography (SPECT) imaging for psychiatry and neurology. The prestigious scientific body endorsed brain SPECT imaging for the assessment of many common issues affecting tens of millions of people. See this article

This is surely going to be a very hot topic where the medical community is finally catching up with technology and years of research. Sure to be on the forefront and not going away any time soon is the focus of getting our laws to also catch up with medical and technological discoveries.

This would also involve getting the Insurance industries on board to provide coverage for this diagnostic necessity and to provide better rehabilitative care to our survivors of brain injury and those suffering with mental illness.

See this article

See this article

Already we are seeing bucks in the system to discount and argue against science ( an ongoing and disturbing trend). See this article

Keep up with the developments with these organizations:

The Brain Association of America

Brain Injury Canada

Brain Injury Conference Canada

Ontario Brain Injury Association

Brain Injury Association United Kingdom

https://www.headway.org.uk/

I can speak from personal experience about my SPECT experience. It was a game changer for me. It validated all of my symptoms. It helped me not feel crazy, but allowed me to know just what to focus on as part of my rehabilitation process.

Having “proof” for something you know is true, because you are living it, is an overwhelming relief and was a hugely emotional process for sure. I was determined to get answers, one way or the other. This process helped me to be able to then focus on what I needed to improve and work on, to let the healing commence, and be able to move on to acceptance in the grief and transformation process of re-inventing myself. The results of the SPECT allowed me to be able to talk about my injuries in a more educated and informed manner.

I honestly wish I had been able to access the services from day 1 of my injuries. It would no doubt improved and perhaps even shortened the rehabilitation process. I am a staunch supporter of the SPECT scan and am hoping that there are ongoing landmark and groundbreaking determinations that benefit the quality of life of all patients.

See our Page about SPECT

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Blog and Updates

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Brain Injury Radio – August Episode

Come and listen this coming Wednesday 8/10/2022 at 10pm EST as Kim and Co-Host Caren, will be discussing Navigating Mental Health after a Brain Injury, and reframing our thought patterns.

Can a brain injury lead to mental health conditions? How can we help ourselves self-regulate?

Wednesday Radio Show – 10pm EST

CHECK OUT OUR OTHER SHOWS:

Radio Shows with Caren Robinson and Kim Justus

Caren Robinson – Survivor

Check out the Orginal HOPEster. The Survival Story of our HOPE TBI founder.

It’s been a while since I have shared my story and I wanted to share it with those of you who may not know it. Thank you for being here as part of my ongoing recovery. I just wonder if we just continue in our process for the duration of our entire lives.

Isn’t the brain and the body magnificent?

“My name is Caren Robinson. I have always been a busy gal. Adrenaline junkie to some regards. Loved riding motorcycles, roller coasters, diving off bridges to go swimming, and also anything to do with The Arts really. I have always had a job since I was … Continue reading HERE….”

My Story page has gotten a wee bit of a face lift, and a few more clarification and more information added. Funny how as time passes, things are easier to talk about. At least some things.

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:

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.

Newest HOPEster – Cathy Law McLaren – Survivor

Help us welcome our newest HOPEster. Cathy is from Everett, Washington.

“I got in a very bad car accident on August 8, 1976 when I was 14 and preparing to go to high school. I was born in the 60’s (1962 to be exact). That was a time when not a lot was known about the after affects of sustaining a severe head injury……..”

“…..If I could share any one message with all of you out there in the world, it would be to not give up. It’s never too late to get help, and keep fighting to get where you want to be in life, even if you have to do it a little bit differently than others.”

You can read her story here: https://hopetbi.com/cathy-law-mclaren-survivor/

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:

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.

Key Tips For Hiring Differently-Abled Employees

Differently Abled Workers

One of the biggest challenges is finding new hires who have disabilities. It’s difficult because they might not have the opportunity to work in a job where their disability is accommodated. For example, someone with hearing difficulties might be limited to jobs that can easily be vocalized.

If you want to attract differently-abled employees, you’ll need to put structures in place to accommodate those disabilities. In this guide, HOPE TBI shares some key tips for making your workplace more inviting to more diverse people.

Ideas to Attract Differently-Abled Applicants

SHRM suggests creating a more inclusive culture, making sure your website can work with assistive devices, offering career planning opportunities, and more. Reasonable accommodations are also important for different types of disabilities, such as allowing for part-time work, providing accessible transportation options, or any other type of accommodation that would help support your differently-abled employees.

Incentives for Differently-Abled New Hires

You should also think about what incentives you can provide for people with disabilities. For example, what if you offer an internship program for people with disabilities and then hire them once they graduate from the program?

It’s a win-win situation because you are able to reach out to this target audience and offer them the opportunity for advancement while providing valuable experience and skills training at the same time. Offering career planning opportunities can also help attract differently-abled new hires. It’s important that they have opportunities to think about their long-term plans in order to feel confident and empowered in any role they pursue.

Revamp Your Recruitment Process

When it comes to recruitment, make sure you’re including all different methods of sourcing and hiring. Keep in mind that people with disabilities are a viable pool of talent to consider when you’re looking for new hires.

For instance, IMPACT notes that you can make your website more accessible to those who need different types of assistive devices by making sure everything is in plain English and using contrast colors for text. You can also offer opportunities at your company for internships or mentorships for those with disabilities.

Finally, think about how your process may be excluding this group from applying. Maybe you don’t have an option on the application form for people who have certain types of disabilities? In order to find out where this might be happening, provide contact information on the application form so that people can ask questions.

Create a Budget for Reasonable Accommodations

If you’re interested in being an employer of differently-abled individuals, budget for reasonable accommodations in the workplace. This includes office supplies and furniture that can be maneuvered to suit those who have physical disabilities. For example, consider providing a desk chair with wheels so that an employee who uses a wheelchair can roll from place to place instead of having to walk around the entire office.

Other accommodations may include louder alarms or bigger signs because some people with hearing impairments or dyslexia may not hear or read things correctly. Budgeting for these adjustments will help you attract more diverse talent to your company.

In addition, a critical housekeeping step is to establish yourself with the state to make sure you are compliant with tax laws. This is also essential in your EIN application, which is necessary for the IRS to use in payroll taxes and if you offer retirement plans.

Finding Differently-Abled Applicants

Michigan has several programs designed to provide disabled population services, as well as other related services. This is a good place to start if you want to connect with differently-abled people who are looking for employment.

HOPE TBI helps take the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.) and various treatment options available. Connect with us today to find out more! hopetbi4ever@gmail.com

 GUEST BLOGGER: Diane Harrison of HealthPSA.info

Image via Pexels

Keep HOPE TBI Services FREE

SEEKING SPONSORS and DONORS

Hello Fellow HOPEsters!!!

Not sure if you are a HOPEster? Check out our definition here: https://hopetbi.com/2018/07/16/be-a-hopester-2/

Did you learn something, read anything that inspired you or impacted you on the HOPE TBI site at https://hopetbi.com/ ?

HOPE TBI brings awareness, educates about self-advocacy, and helps take some of the struggle out of finding resources and information when someone is faced with a trauma from a polytrauma or brain injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc.), and treatment options available.

Do you support bringing awareness to the topics written about and want to see more content? Check out our Blog at https://hopetbi.com/blog-and-updates/

Keep HOPE TBI active, growing and it services FREE.

You can support general operations, outreach, and awareness efforts of HOPE TBI by being a donor or sponsor at https://hopetbi.com/donations/.

(all yearly donators of $500 or more have the option to have their name, “in memory of” name, or business name/logo listed on our “Sponsors” page for one year after donation made)

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: 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.

Having Faith

FAITH is stepping on the “seeming void” and finding the rock beneath.  

                                                                         With FAITH comes HOPE. 

Where there is HOPE there is FAITH

                                                         Where there is FAITH 

MIRACLES happen.

I can say with pure conviction that I would not have survived all that I have this far into my life without a strong connection to my Faith and my deep Spiritual Connection. I can say that throughout this recovery process, there are times when it feels that all I have that is consistent is my Spiritual self and my every present, life clinging grasp onto HOPE.

I am not without humility when it comes to the fragility of life in general.  I am truly in awe of the miraculous events, too numerous to be coincidental, involving the wreck I was in and all of the circumstances in my life since.  There were angel wings wrapped around my son that day.  It is the only explanation for his survival….the only explanation for my survival.  My continued courage to overcome seemingly insurmountable difficulties, medical and otherwise have only been conceivable due to my connection to God and the abiding Faith that I embrace.  This propels me and gives me strength to never give up HOPE.

“Can’t” is not in my vocabulary as a general rule.  I have never been that type of person to accept “can’t” as an acceptable answer.  I feel this limits the education and growth of ourselves as individuals, professionals, spouses, family, parents, and friends. If at all possible, rid this word from your life. Instead replace it with “can attempt” “can make effort to” “can do it” “can accomplish” “can change my thinking about” and any other word or phrase that includes your ability to put forth the effort in living the opposite of “can’t”.

One of my favorite verses is Phillipians 4:13  “I can do all things through Christ which strengthens me”.  This has fueled me for years.

I lived through this wreck for a reason.  I was meant to survive.  There is a plan, a special plan for my life.  My life matters. I truly believe this. I am not here to merely exist without offering some meaningful contribution to my family and the world.  I have been led to serve others my whole life.  I have enjoyed this life of service immensely.  I am grateful for the blessing that I have been given to continue my life’s journey. Sometimes, I am not sure why I was CHOSEN to live, while others with far less injuries have died – but I will not waste this time.  It is precious, and every moment counts! 

My dad used to say that many are “LED” but few are “CHOSEN”.  I never understood that very much as a child, however, I feel I am getting a better grasp on this as an adult – especially as one who continues to survive from a Catastrophic and Life changing event (but then aren’t all life events life changing?)

I find myself led to continue to write about, speak about, and educate about my Trauma, my Survival, my Rehabilitation, and Self-Advocacy –  so that others may perhaps find something useful from my experiences and I have a written expression of healing. I am enormously grateful to my mother for starting a blog for me in the beginning, and for being a testament for my life.  The timeline of events that she has written about has been very helpful to me as well and helped me fill in a lot of blanks for things I just do not remember.  I love seeing her posts and hearing her words like a warm blanket of protection.  How she knows how to say just the right things still amazes me.  I hope, in the end, that my kids love me as much as I love her; as much as she has helped me to continue to love myself.  She is amazing. 

I am blessed with a selfless and loving husband as well.  He has sacrificed much for me.  He makes me feel beautiful and shines light in my life, even in the darkest of nights. Not only did God Choose me, but so did he.  My love for him is unyielding and he is simply the best man I have ever known in my entire life (before and now). He is beyond amazing and I am truly fortunate to know such love.

My HOPE is that I continue to evolve professionally and personally. My HOPE is to continue to be led to the proper medical care,  and interventions to help me further my life as a functional, active, evolving, spiritual and passionate human being. My HOPE is that my family is continually blessed with support and strength to endeavor this journey with me.  It has not been easy on them either.

I realize I will never be the same Caren I was before the wreck.  That much is abundantly clear. The “new normal” I embrace I am still getting to know…….even years later. From being bent and literally broken, to a process of healing that incorporated plates, screws, nails, modern day technology and a sheer will to survive. I have been able to find value in the life I have been gifted to live. I am not perfect, I am far from it. There are struggles that still challenge the fabric of my existence. There are challenges and fears I still face. Sometimes, on a daily basis. However, I am grateful for the opportunity to face them and continue becoming the best version of myself possible.

We are allowed to be a masterpiece and a work in progress. I am a work in progress, my life is my masterpiece, and I am not giving up on ME.  Your life, your story, your experience, your sheer grit to survive is your masterpiece. I see you. You are not invisible. Don’t give up on you.

If you are reading this, thank you for being here at this moment.  Please don’t give up on me either.  With your help, your ongoing support, your presence, your intercession, your skills, your energy – real or virtual, all things are possible.

Have FAITH.  Never give up HOPE.

                            With FAITH comes HOPE

Where there is HOPE there is FAITH

Where there is FAITH.  MIRACLES happen.

I AM LIVING PROOF OF THAT!!!

Grief and Renewal

Brain Injury Radio Show – Listen to our April 2022 Episode – HERE

Easter actually began as a pagan festival celebrating spring in the Northern Hemispherelong before the advent of Christianity. “Since pre-historic times, people have celebrated the equinoxes and the solstices as sacred times,”   Later, Easter became recognized as the highest celebration of Christianity. Because the resurrection establishes the belief in life after death. Happy Easter if that’s youHowever you believe, spring signals a time of renewal, when new life and color emerges.

Add the Virus and other news hot topics the past few years, and there has been ample opportunity for us to have reason to grieve. With more isolation, lock downs, fear mongering .. Grief over real losses of all kinds, has perhaps been even harder to bear. Grief is stressful enough, but add everything else mentioned, and no one has been immune to grief. We must take time to grieve, or we would never fully appreciate gratitude.

Tonight we discuss grief and renewal for brain injury survivors. We’ve felt the sorrow, now how do we refresh and move forward?

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 good bit of Warrior!

Hosted by Kim Justus, author of In a Flash: Miracles Here and Beyond and Hootie’s Hollow and the Magic Tree found at inaflash.org and Amazon & “Like” me at facebook.com/inaflash.org too! For More on Caren’s great Blogs and Resources see: hopetbi.com

Other Radio Shows with Caren Robinson and Kim Justus

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:

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.

Newest HOPEster Ramona – Caregiver

This is where it all began. The HOPE TBI Blog and the HOPE TBI Website.

It all began with my mom starting a blog and fundraiser on my behalf, years ago. My mom has been one of the many valuable supports in my life, through everything. She never gave up on me; for that I am grateful.

I asked her to collaborate with me to do a story page to honor her and the process she put so much effort into on my behalf. This is that story.

(Click on Name to access story page)

Ramona Andrews – Caregiver

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

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.

Brain Injury – A Disease Process

This is an excerpt from the Paper written by renowned Neurologist “Masel”:

“……The purpose of this paper is to encourage the classification of a TBI not as an event, not as the
final outcome, but rather as the beginning of a disease process. The paper presents the scientific
data supporting the fact that neither an acute TBI nor a chronic TBI is a static process—that a
TBI impacts multiple organ systems, is disease causative and disease accelerative, and as such,
should be paid for and managed on a par with other diseases.
Despite the fact that patients with a TBI who survive the acute event do not die of their brain
injury per se, a TBI is a disease…….”

Masel, B. Conceptualizing Brain Injury as a Chronic Disease. Vienna, VA: Brain Injury Association of America, 2009.

REPORT in PDF Format: http://www.lexisnexis.com/documents/pdf/20090513025855_large.pdf

WEBINAR: http://www.braintrauma.org/february-2011-webinar/

Is Brain Injury a Chronic Disease? (Commentary Regarding The Brain Injury of America’s “Conceptualizing Brain Injury as a Chronic Disease”)             http://www.braininjurynetwork.org/thesurvivorsviewpoint/achronicdisease.html

Brain Injury Radio Show with Dr. Brent Masel.

Quantum Leap: Dr. Brent Masel on Transitional Learning after TBI

Golden Girls Explain Golden Opportunities

This is a post I wrote just as I was really learning to claim my role as an advocate for myself. It was a turning point for me, in truly learning to trust my body and not necessarily what I was told about my body. It was when I decided to trust MYSELF, and to speak up when I felt or knew something was wrong.

This experience with this nightmare provider was someone I should have been able to trust. It turns out he took advantage of that trust. This experience brought me to a painful realization that not all doctors respect the “do no harm” oath.

In fact, if left unchecked, those who don’t value that oath, can cause a great deal of additional irreparable harm to their patients, can absolutely cause medical PTSD, and change the course of a patients care for the worse. I share this again as it should not be forgotten.

Find your voice and speak up for yourself. You are worth it

(previously posted elsewhere in 2014, yet worth reposting)

The Golden Girls

Golden Girls Explain Golden Opportunities

TBI is an invisible disease….so is PTSD….and so are things that are obvious injuries if NOT actually checked…..if the doctors actually LISTENED to their patients and did the tests and procedures they were supposed to  from the beginning rather than making judgements without following through – or without actually consulting the patient about their decisions.

This is essentially what happened to me too. I was in a vehicle accident with polytrauma and Traumatic Brain Injury and several fractures. Then I keep complaining all through therapy that my pain was worse and I was losing strength on my right side. I was released to attend PT OT and ST without restrictions that during and after therapy….I spoke of my pain and limitations often. Not the referring Orthopedic Dr. nor the Rehab Dr. ever did a CT Scan to follow up on my pain or x-rays of all the previous fractures. In fact, the Rehab Dr. said it was probably all anxiety related and I needed to put in “more effort”…He even held my arm up and dropped. I couldn’t hold it up on my own. He thought I should try harder – what he didn’t accept is that I was giving it all that I could. It just wouldn’t work….and now I know why. As it turns out for the last 9 months I finally get that CT scan and it shows that my ribs 2-11 are still fractured and displaced with NO HEALING…and that shattered and fractured scapula on the R side?….YEP….no healing either. I am now scheduled for surgery Oct. 8th to plate and put screws on each rib and reconstruct my scapula/body and plate and screw those as well…..obviously THEY weren’t putting in enough “effort”…. if they only listened to me. Feels good to be validated and know that I can actually trust my own judgement about my body though…my PCP on the other hand has been great so far….I have a medical case manager too who has been advocating for me as well….I can say that they only added to the anxiety I was already having about the wreck in general….those other doctors, that is.

This is a great episode from the Golden Girls show about Invisible Illnesses where she confronts the Dr. who didn’t listen to her…..this is just AMAZING!!!

I only wish I could do this with my Nightmare Doctor….

Compilation of all the doctors Dorothy went to and the process she went through to get answers:

Confrontation by Dorothy to Dr. Budd

Both Empowering and worth watching!!!

Eight Is Enough

Some of you may remember this show back in the late 70’s, early 80’s.  For those old enough to remember..this was about the Bradford family, which consisted of 8 very independent children and the trials and tribulations of growing up, facing important decisions, and other tough topics of that time.  They had a father, Tom, who to me seemed quite oblivious to a lot of common sense solutions, yet when it counted, came through as a great source of love and support for his family.

There were a lot of movies, TV shows, and other depictions of families that carried us through relatable, humorous, and sometimes downright serious content and the process of life transitions, which we would stay glued to the TV or Big Screen to see just how things turned out, see justice done, capture a glimmer of hope, or just escape to be entertained for a wee bit.

In those moments, of living vicariously through our favorite character’s lives – we shaped our view of not only ourselves, but the world around us.  We shaped our views on advocacy, education, societal roles, relationships, our sexuality, and they challenged us to think outside of ourselves just a bit….especially if they included controversial content – personal writing ahead of its time really.  When a character would be removed from a show, killed off, or somehow taken in a different direction – it sometimes affected us deeply – especially if we watched them grow up or felt we were growing up with that character as well. Relatable, right?  It sometimes felt like we were losing a friend or loved one of our own – even though, by all accounts, this was completely unrealistic.  How could we go on?  Yet we did.  One day moved into the next, a new show, new series, new movie emerged and suddenly the previous experiences though remembered, became a distant memory, now replaced by better writing, CGI, better special affects, powerful acting, and tapping into those topics that often remained previously untouched. 

Some of us also no longer had time for that level of commitment to a “character” because we were building our own “character” through our lives, our own careers, our own families.  Striving to make sense of all the changes, the challenges, the amazing tribulations, the absolute exhaustion that being a responsible adult brings.  How could we go on?  Yet we did.

We all have experienced trauma in some sort.  Some from their first breath out of the womb, some their entire childhood, some their entire life in one form or another; some – a one and done situation which impacted the entire fabric of their lives despite all the good that exists around that one trauma.  Some of us persevere, some don’t.  There are so many factors that influence all of those changes and the way we evolve through them….or don’t. I am not even going to begin to attempt to list them all here.  Yep, there are that many.  We wake, we wonder – How could we go on?  Yet we did, and we do.

In this moment, as I reflect on my life on this 8 year Anniversary of the wreck that changed my life forever, in every aspect…..I am struck with examining all the characters in my life, my influences, my beliefs, my moral compass, and I think of all that I have survived and continue to endure.

I think of the effort required to overcome unimaginable pain, hopelessness, limitations, a stripping of life, dreams, and independence since that fateful day.  There were a multitude of moments where I would cry, rage, and scream…perhaps even laugh hysterically at the irony of things being the opposite of what I envisioned for my life at that time and since.  The stages of grief became my daily association with that one question that no matter how I progressed or what kind of HOPE I held….still loomed waiting for answer.  How could I go on?  Yet I am, and I do.

During this process of trauma, re-inventing myself, effort, and personal growth – I have learned some very hard, valuable lessons.  Some I am truly grateful for…others, not so much.

I have had my rose colored glasses ripped from my face, stomped on, crushed into the ground, and damn near destroyed from an repairable possibility.  However, once you see things from the way they actually are vs how you think they are….well….now that has a life altering affect of its own.  Which way you allow it to take you depends a lot on your own mental fortitude and ability to CHOOSE to go on, CHOOSE to survive, CHOOSE to be the best version of yourself in this very moment.  It depends a lot on whether you CHOOSE to accept and embrace the smallest victories, the smallest growth, the smallest blessings.  How do we go on?  We CHOOSE to.

I still enjoy watching a bit of TV and a movie here and there.  It is interesting to see how the writing in the shows nowadays differs a lot from my younger self’s experiences with the progression of each character. I find myself, with the assistance of technology, social media communities, and access to a plethora of information readily available at my fingertips…..that my possibilities for research, growth, healing, advocacy, and a life drenched with an unpredictable next step – have been forming that picture on life’s big screen in answer to the beckoning call of each Anniversary that reminds me that I am still here….thriving….without even knowing I could sustain as long in this form…as I have. 

I am struck with reflecting on this being the 8th year since the wreck.  The 8th year since I fought for each breath and each step and each ability.  The 8th year of creating a living visual answer of….despite starting over and over and over –  “How do we go on?” 

I am left with this.  Eight is Enough.  Enough time to decide to live; Enough time to choose HOPE permanently; Enough time to continue to vibrantly live a life of gratefulness, appreciation, and acceptance of what is, and what isn’t; Enough time to speak my truth, sound my voice, and share my words without feeling self-conscious about what others think about my experiences, or me as a whole person.  Enough time to decide to not just plan, envision something someday, not just try….but do.

Eight is Enough.  Enough time to finally be able to say out loud….”I am disabled, but I am more than my disabilities.  I am doing, and will continue to, do the best I can every day…and THAT….is enough!

Our 2 Newest HOPEsters – Debbie and Kris

#MoreThanMyBrainInjury

We want to introduce a Survivor story and a Caregiver story.  The battle for survival and quality of life continues with these two powerful stories.  

 

Debbie Webb – “The year was 1990, I was practicing barrel racing and the horse I was riding slipped onto her side.  Upon impact with the ground, I was immediately unconscious.”  Check out her story here: 

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Kris Ruckle-Mahon – “My role went from being a parent to a caregiver on April 11, 2007, something I was not financially prepared for. I was fortunate though, to have a great work and family support system to help us through it.”  Check out her story here:

readmorearrow

New Page Added – Clinical Neuroendocrinologists

Hello HOPEsters. We are thrilled to be able to share with you a list we have tirelessly compiled of “clinically practicing” Neuroendocrinologists who provide direct patient care.

This is not an all inclusive list and does not include Neuroendocrinologists that are  “researchers or lecturers” only.

Let us know of any others that are not on the list and we would be glad to add them.

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Also check out our Neuroendocrinology page as well, if you haven’t already done so.

HOPE TBI – PODCAST

New Episode Every Sunday

This past Sunday we had 2 new Podcasts drop from our Blog post about Sex and Disability

The first Podcast is part one of a 2 part series – Sex and Disability

The second Podcast is part 2 of a 2 part series – Sex and Disability: Sex and Brain Injury After Trauma

Introducing HOPE TBI Podcast

We are thrilled to announce another way of bringing support to you, and awareness to brain injury and polytrauma. We are pleased to introduce you to our Podcasts.

If you couldn’t get enough of the HOPE TBI website, Blog, or Support Groups… you are going to love listening to our Podcasts.

If you are someone that has difficulty reading, or is on the go and no time to peruse web pages, you are going to love the convenience of listening to our Podcasts.

If you are new to HOPE TBI, then welcome. We have a lot of support to offer you through our many FREE services.

Please remember to leave a Testimonial to give us feedback. Do you like what you hear? Are you getting value from the content? What impact has HOPE TBI made in your life. We want to know.

Listen Here: HOPE TBI – PODCASTS

Our Podcast is available on Anchor by Spotify, Spotify, Breaker, Google Podcasts, Pocket Casts, and Radio Public

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.

That Mother

I just want to say to all you Mothers’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure…..

I see you.

I see your love, your sacrifice, your devotion, your fierce advocacy, your struggle, your effort, your laughter, your tears, your disappointment, your celebrations, your resentment, your anger, your amazement, your exhaustion, your selflessness, and your commitment.


I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….

I hear you.

I hear your cheers, your jeers, your concerns, your focused topics, your questions, your accolades, your encouragements, your motivational speeches, your yelling, your frustration, your grief, your joy, your coaching, your mediation, your compassion, and your ongoing effort at communication.


I just want to say to all you Mother’s, Step-mothers, Foster Mom’s, and Guardians fulfilling a role as a “mother” figure….

Just Be You.

Be the best version of yourself each day, be that disheveled mess, be that organized detailed version of yourself, be true to your values, be that parent that can admit their mistakes, be that parent that lives by example, be a stay at home parent, be a working parent, be a disabled parent, be a retired parent, be scattered, be focused, be hard to understand, be easy to get along with, be the parent that lacks humor, or be the parent that can make your child laugh. Just be YOU.


You are who your child(ren) will remember long after they have grown and you are their influencers for good or evil, love or hate, bravery or fear, joy or sadness, loved or abandoned, condemned or celebrated. You are the beginning of their imprint on the world.


Thank you for being just who you are and adding to the fabric of our world with your ability to be THAT MOTHER.


Happy Mother’s Day!


~Written by Caren Robinson 2021

HOPEster Movement

Join the HOPEster Movement!

Are you passionate, idealistic, and believe in the inherent goodness of others and our collective responsibility to each other as human beings?

Then you are a HOPE’ster!

https://www.facebook.com/groups/hopester/

#HOPEster #hope_tbi #ImaHOPEster

Brain Injury Awareness Month

Brain Injury Awareness Month
Join the  #MoreThanMyBrainInjury 
Campaign this March

The Brain Injury Association of America (BIAA) leads the nation in observing Brain Injury Awareness Month by conducting an awareness campaign in March each year.

The Brain Injury Association of America (BIAA) theme for the 2021 to 2023 campaign is More Than My Brain Injury.

About Brain Injury

#hope_tbi

5 Important Brain Injury Recovery Steps

HOPE TBI Podcast
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:

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.

Transition Ability

Let’s start your journey. Contact me for a FREE 30 Minute Life Coaching Consultation.

Sometimes its the journey that teaches you a lot about your destination ~Drake

If you can’t fly, then run; If you can’t run, then walk; If you can’t walk, then crawl; but by all means, keep moving.
~ Martin Luther King Jr.

#vitalabilityllc #transitions #ability #hope_tbi #lifecoach #trauma #braininjury #survivor

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:

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

Hello HOPEster’s,

I wanted to reach out and share our latest and greatest page with all of you.  It is our Reviews and Testimonials page.

If you are seeing this message in your email you have subscribed to our email notification list.  That means you care enough about our content to want to be notified when we post something new.

If you are coming on this Blog post by scanning our Site, please take time to also leave your review and feedback after exploring a bit.

We would be thrilled and grateful if you would take a few moments to type up a review or feedback about our website and submit it in the comment section of our new page.

You can reach our page here:

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

.

reviewstestimonials

No Glove No Love – Safe Sex After Brain Injury

sexbrain

Sex and Disability

Sexuality is one of the most complex aspects of life but, the sexual lives of people with disabilities have been disregarded and stigmatized. As a result, sexuality as a form of pleasure and an expression of love is not taken into account or even recognized for individuals with disabilities.

Sexual expression is influenced by cognitive and emotional processes and is dependent on functioning anatomical and physiological systems, in other words, our brains control our sexual organs and responses.

Before resuming sex with a partner, boyfriend, girlfriend or spouse, talk about it with your doctor or therapist and be guided by their advice.  Make sure you are clear and talk with your mate about your expectations, fears and feelings, including consent. Communication is key! Remember to not put too much pressure on yourself, focus on pleasure and not technique. You may need to change your same old lovemaking style and experiment with other sexual activities which can include

  • oral sex and mutual masturbation
  • utilization of sexual aids/toys/furniture
  • to increase intimacy, concentrate on boosting the romance in your relationship by offering lots of affection, complementing and saying nice things to each other and celebrating big and small occasions.

Importance of safe sex

After a TBI, it is just as important for you to protect yourself from unplanned pregnancy and from sexually transmitted disease as it was before your injury. Even if a woman’s period has not returned, she can still get pregnant. Here are some tips to help with birth control and protection from sexually transmitted disease.

  • Do research to help figure out what method of birth control and protection from sexually transmitted disease are best for you.
  • Because of changes in thinking abilities, it may be harder for you to remember to use protection or to remember to take it with you.
    • You can plan ahead by always carrying a condom or other method of protecting yourself and your partner.
    • For women who use birth control pills, or a device that must be replaced, using a calendar or alarm on a smart phone can help you remember to take the pills or change the device.
  • If you are unsure whether your partner has a sexually transmitted disease or has been intimate with others who have such disease, it is safest to use a condom.
  • If you have engaged in any risky sexual behavior, one of the best things you can do for yourself is to get tested for sexually transmitted diseases and get treated if you test positive.

Consent should not be assumed

Each of us is responsible for making sure we have consent in every sexual situation. If you are unsure, it is important to clarify what your partner feels about the sexual situation before initiating or continuing the sexual activity. Consent should not simply be assumed by:

  • Body language, Appearance, or Non-Verbal Communication: One should never assume by the way a person dresses, smiles, looks or acts, that they to have sex with you.
  • Dating relationships or previous sexual activity: Simply because two or more people are dating or have had sex in the past does not mean that they are consenting to have sex with you.
  • Marriage: Even in marriage, a person should not assume they have consent for sexual activity. Marital rape is as serious as any other sexual assault.
  • Previous Activity: Consent to engage in one sexual activity at one time is not consent to engage in a different sexual activity or to engage in the same sexual activity on a later occasion.
  • Silence, Passivity, Lack of Resistance, or immobility: A person’s silence should not be considered consent. A person who does not respond to attempts to engage in sexual activity, even if they do not verbally say no or resist physically, is not clearly agreeing to sexual activity.
  • Incapacitation: Alcohol consumption or use of other drugs can render a person incapable of giving consent. Alcohol is often used as a weapon to target individuals and is used by perpetrators to excuse their own actions.  Additionally, Michigan Criminal Sexual Conduct laws apply to a perpetrator regardless of whether or not they were drinking. It is important to remember that sexual assault is never the survivor’s fault, regardless of whether they may have been intoxicated.

The term “sexual assault” means any unwanted, nonconsensual sexual contact of any kind (including kissing) obtained through the use of force, threat of
force, intimidation, or coercion.

Rape is unwanted, non-consensual sexual contact that includes penetration (i.e. vaginal or anal penetration, oral sex, and genital touching) obtained through the use of force, threat of force, intimidation, or coercion. 18% of all rapes and sexual assaults are reported to be committed by strangers, which means that most of these crimes are committed by someone the victim knows, is close with or related to (according to the 2017 Bureau of Justice’s).

Myths About Disability and Sex

  • Disabled people can’t have sex.
  • Disabled people have to pay for sex.
  • Disabled people aren’t sexy. 
  • Disabled people don’t want or need sex
  • Disabled people only have kinky sex
  • Disabled people can’t have sex
  • Disabled people only have sex with other disabled people
  • Disabled people can’t have kids
  • Disabled people shouldn’t have kids because they can pass on their disability
  • If you have sex with a disabled person you will catch what they’ve got
  • Disabled people are a burden on their partners
  • People living with a disability can’t have “real” sex
  • Disabled people need protection, like kids
  • Disabled people have more important things than sex to worry about
  • Disabled people are brave and courageous to try sex (no, it’s just adapting to a lifestyle)
  • All persons in wheelchairs are chronically ill, frail, or sickly

Facts About Disability and Sex

  • People with disabilities can be sexual and enjoy sex
  • Some people who use a wheelchair can still feel “down there”
  • Sex is not just all about each others “privates”, it’s about intimacy as well
  • Mobility aids can be a fun addition
  • People with a physical disability don’t just “lie there”
  • Disabled people can have sex and enjoy it
  • Disabled people sometimes choose to pay for sex like people who aren’t disabled
  • Disabled people are sexy
  • Disabled people can have sexual desires/needs
  • Disabled people can have kids and build families of their own
  • People with disabilities can identify as LGBTQ too
  • All people need to learn about and understand sex
Also check out our web page called Sex After Brain Injury and Trauma

disabilityandsex

Happy New Year HOPE’sters

Here’s hoping all our fellow HOPE’sters had a Merry Christmas and Happy Holidays.

We would like to wish you a Happy New Year with 2020 vision of great things yet to come.

Never give up HOPE, and never be afraid to be who you are meant to be. Don’t be afraid to be who you are!

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/

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

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

;;

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

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

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.

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/

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

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”

Caren Robinson - Pics PreSurgery 3

      

Leave us a Comment Below….

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.

The Scapula Institute

If you follow this blog and Website you know that I am a survivor of what was a catastrophic motor vehicle accident, which resulted in a polytrauma in 2014. I continue to do my best to address each of my injuries in this website (see the various tabs) and blog about my subsequent rehabilitation (see frequently asked questions page for more information about HOPE TBI).
Through this whole process there are injuries that have been discovered which are somewhat subjective, some that are obviously causal, and then those that are absolutely empirical.  The most empirical injuries in a polytrauma are orthopedic injuries. Yet even with the vast knowledge, sacrifice, and dedication of our best orthopedic professionals, there is still more to learn about the body to facilitate repair and healing.  
At The Scapula Institute (St. Paul, MN) that is exactly what they do. Promote wellness, artistically and methodically delve into the seemingly impossible and make miracles happen.
I know this because I am one of their many success stories thanks to Dr. Peter Cole MD and his Trauma team.  Thanks to The Scapula Institute, Regions Hospital, Health Partners and St. Paul Radiology.  All of them. Working together in a cohesive way to affect change and dish up a bit of HOPE for those who have been cast out as hopeless.  I know this first hand after being told by numerous previous traumatologists that I just had to live with my injuries and they could not be fixed.  They were thankfully VERY wrong about my shoulder and the ability to have it fixed.
Dr. Peter Cole, MD is a visionary and progressive man and an artist with his Scalpel.  It is, in honor of his great works, and in true appreciation of having the majority of the use back in my right shoulder, that I (and HOPE TBI – which is essentially me too – lol) endorse The Scapula Institute and their endeavors.
It is rare to fracture your scapula.  In fact I did not just fracture mine, I shattered it.  That gives you a bit of an indication of the sheer force involved with the wreck and how truly blessed I am to still be here to talk about this.
Information taken from  The Scapula Institute  website: 
 “It is important to know that the majority of scapula fractures do not require surgery. The scapula has a rich blood supply, which helps fractures heal quickly. In addition, the surrounding muscles provide support for the bone during the healing process. These two factors can provide a very favorable environment for healing. There are, however, certain categories that may benefit from surgical intervention.
It is estimated that scapula fractures account for less than 1% of all fractures. It truly is a rare injury with few surgeons experienced in the surgical management of severe fracture variants. Please look through our site and then contact us regarding your specific needs. We are one of the world’s top research teams dedicated to all aspects of shoulder girdle trauma.”
The Scapula Institute has developed optimal diagnostic strategies in addition to pioneering advancements in the surgical treatment of complex fractures. “It is our goal to restore normal function to patients who have sustained injuries to the scapula, clavicle and shoulder girdle unit.”
 The Scapula Institute  has an International referral base. So don’t think that your ability to rehabilitate is limited by your location or Country you come from.

Let me know if you have any questions about my experiences.  I still have a long way to go….however, I am here…alive and able to complete my life journey…now with the use of both of my arms; man does it feel good to be able to hug with both arms again!!!

Never give up HOPE.

Vitamin D Deficiency Post Trauma

Just wanted to post that we have completed another page on our Website here to assist you in getting some answers.

I just want to note that I have been chronically anemic AND have had continually low Vitamin D counts since the wreck.  In fact while hospitalized within those 3.5 months after the wreck, my Vitamin D was less than >1 (not even readable) – crazy huh?

I have been on lots of Vitamin D supplements since the wreck too – D2 D3 and Calcium+D….so Deficiency Def Trauma related!!!

Vitamin D Deficiency Post Trauma

Give a read, make a comment, and share…

 

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

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.

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

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.

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

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.

Two Surgeries Completed January 2016

Hello. In MN January 11-24, 2016. It has taken me this long to get my energy up enough to type an update…..

I apologize that it has taken me so long to come to give all of you an update since my surgeries. I also must apologize for any horrible writing or spelling…I am still on the mend. First I want to sayis HALLELUJAH i AM ALIVE!!!

This has been quite the experience and it will continue to be. More posts will follow this one, however for this one I want to address some special folks. I tried to keep track the best I could with my notes. I truly apologize if I miss your name.

Specifically to My Primary Care Physician and her office staff; my Counselor, Mercy Medical Angels (especially Steve Craven), Barry and Caryn Mehler (dear Friends), Mary Herndon-Williams (sister from another mother), Priscilla Benavides and her husband (an old soul friend), Karleen Robinson (my mother-in-law), Carly Kissinger ( a teacher),  and Samantha Rogers (Trauma Survivor), and the Rabbi from Ahavas Israel in Grand Rapids, MI; and Unity Center for Spiritual Growth in Ada, MI; United Airlines and its many wonderful staff and crew, Gerald R Ford Airport out of Grand Rapids, MI to Chicago O’Hare (in nowhere else but Chicago, IL) to Minneapolis St. Paul. Minnesota and those of you who pushed my wheelchair – THANK YOU FOR GETTING ME THERE SAFELY. Without your help and support my arrival would not have been possible. To the gentlemen in 1st class who gave up your seat for me because I looked so uncomfortable in coach from Chicago to St. Paul – mere words are not enough to give you my deepest gratitude. You are a gem.

When we arrived. An enormous thank you to Yellow Cab, Embassy Suites, UBER, SuperShuttle, the hospital shuttles, delivery folks, and the beautiful people of St. Paul who made a very scary and lonely time not so scary and not so painful for my husband and myself.  Thank you Unity in the Heart Church in St Paul, MN.

THE GOOD STUFF – MEDICALLY LAIDEN

To my EMG team and Dr. Olson at Regions hospital, the Radiology Department, the lab, Medical Records and the Welcome staff – thank you for being quick and efficient and accommodating.

Veronica the bone specialist and Dr. Pegrow from Infectious Diseases – you guys are amazing and taught us a lot. Thank you Charge Nurses and Patient Relations and for the Alternative Medicine that compliments the Allopathic side of things. This made a world of difference for me and helped manage my fear, anxiety, and pain..

For my miraculous Dream Team with Health Partners, Regions Hospital, my Orthopaedic surgeon Dr. Peter Cole (our dedicated man of God and Science)  who made all this possible for so many like me AND ME, Tricia Corbo, Jenny, Tina Most, his two fellows Dr. Hesse and Dr. Diskin, the Anesthetist and the Nurse Anesthetist and all the office and team members whose names I didn’t write down, don’t remember or I don’t know in the office, this process and in the Operating Room – thank you for helping fix me and for keeping me alive to face another day. Your hands are truly the extension of the hands of God himself and I value and am grateful for each and every one of you.

For the floor staff thank you to Dr. Campbell (you were a sheer delight), Dr Brenner (miss that beautiful long hair 🙂 ty for your compassion), Dr. Mehta (kind eyes and soft smile); Brigid PT and Lena OT and lets not forget the folks that make the Doctor’s work look flawless and managed my pain and care in a more extended way – my NURSES Alena, Stella, Annabelle, Megan, Jessie, Abbey, Kasie, Niki Z (or2),Rachel, Rin, Rose, Leann, Brian and Kristy – Annie I forgive you for missing my meds for the whole night….it was a good lesson for me not to miss my scheduled doses – even good comes from mistakes…..forgive yourself and move on.

Also my Nursing Assistants they call PCA’s in MN: Fey, Hanna, Sandi Nettle, Laura, Dominique, Lisa, Mollie, Crystal, Lindsay, Nalee and any others I may have missed while sleeping or being to groggy to write. You were my hands when I couldn’t and my extended family while away.

To my husband Rick Robinson and soulmate and best friend – thank you for braving the trip, this uncertain future, and for sacrificing so much of yourself and your time, and your sleep for me. I know it takes so much from you and you deserve more than I could ever begin to repay you. I love you and value every moment with you. Thank you for believing in me and not doubting me all along through this whole shabang.

To my family who waited for me at home, for my darling children, for those who lovingly cared for my children while Rick and I were gone…..Thank you and I appreciate the support , love, and prayers.

I am home dear ones I am home! I am so eternally grateful and not last or least, but thank you Heavenly Father for granting me purpose in this world and allowing me to carry on another day to tell this story and continue to recover.

Follow up appointments in MN with Dr. Cole on February 10, 2016, then at 6 week mark – then 3 months, 6 months, 9, months, and 12 months. We are grateful for these opportunities to watch miracles abound and grow.

Two Surgeries Completed January 2016 – Determined We Are

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)

 

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