HOPE TBI Co-OP and Exchange

Come visit us at the HOPE TBI Co-op and Exchange. Currently serving The United States and US Territories.

Please do NOT list items for sale here! We are a Co-Op/Exchange Group Only (no monies exchanged)!!!

Remember to Bookmark this Group: https://www.facebook.com/groups/HOPETBICoOpExchange/

This group is to list durable medical equipment, supplies, technology, machinery, prosthetics, etc. that you are ‘gifting” for FREE to someone in need.

You may also post a request if you are needing something as well. Please only request item(s) if unable to acquire by any other means. No acquiring items just to sell them.

THIS GROUP IS NOT OPEN TO VENDORS.

[Disclaimer: This group does not support or endorse the exchange of medications or supplements in any form. Please see your medical providers for those needs. This Group or its Owners/Moderators are not responsible for any transactions, equipment, or product exchanges with another member]

    Gifted Items/Needed items can be, but are not limited to: vehicles, hospital beds, wheelchairs, braces, ventilator equipment, oxygen concentrators, traction equipment, personal care aids, books, Posey Lifts, adaptive equipment, Manuals/information, Bathing Supplies, mobility aids, etc – and other items useful to a person with a disability or injury. The sharing opportunities are endless.

We realize that Insurance does not always cover all the needs a person has after experiencing a devastating and catastrophic medical emergency. We also realize not everyone has insurance. We understand being financially strapped, destitute, or handicapped after a life changing medical event.

Being a member of this Group does not imply nor guarantee that you will have your needs met or provided, but merely an additional opportunity to network with those who may be able to help directly or indirectly.

This Group will also allow you the opportunity to share your fundraising pages or place to post your public funding request page links (like Go Fund Me Page, PostHope page, Pay It Forward Page, YouCaring page, Give Forward, Donors Choose, etc). Be prepared to be vetted for authenticity.

It is strongly advised that if you meet anyone offline, that you do so in a public and safe location.


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.

Michelle and Joe Patnesky – Parents of Hailee

Check out the story about a mom fighting for the life and proper care of her daughter who was hit by a car January 2021.

When doctors and therapists don’t have faith, sometimes a family’s love and prayers can work miracles.

Michelle Patnesky, the mom of 17 year old Hailee, takes us on a journey with her family as they traverse the system to advocate for their daughter who has sustained a severe brain injury and remains in the hospital.

https://hopetbi.com/michelle-patnesky-caregiver/

Help me welcome our newest HOPE’sters!

Introducing Vera Quijano – Survivor

Check out our newest story submission. at HOPE TBI www.hopetbi.com

Vera Quijano, a dance and yoga Instructor, who is now dancing to the beat of a different drum after sustaining a Traumatic Brain Injury after surviving a vehicle accident, where she was hit by a drunk driver.

Check out her video interview here:https://hopetbi.com/vera-quijano-survivor/

Also check out a song she wrote about her journey called “Post Concussionist” here: https://www.youtube.com/watch?v=yKLVx5em_fo

At HOPE TBI we welcome Vera as our latest HOPE’ster!!!

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

Beating The Stigma of Mental Health

Check Out Our Radio Show from today for

Brain Injury Awareness Month.

Brain Injury Radio Recovery Now – with Caren Robinson and Kim Justus, sponsored by the TBI Network.

(click Title to right) Beating The Stigma of Mental Health

Check out our collection of other Radio Shows here as well:

Publications, Radio, and Outreach

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

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

Year of the SEVEN

HOPE TBI PODCAST

Today is my RE-BIRTHDAY.  I am 7. 

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for visiting the HOPE TBI Website.

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

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

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

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

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.

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

Open Letter – Mr. President

Open Letter to the President of the United States of America.

1/24/2020

Dear Mr. President,

Your role as a leader of the free world is the most important in the Republic, in ours….these United States and all her territories. Your role affords you the ability to maintain influence, direction, opinions, and historical precedence through each of your spoken words, deeds, and continued representation of various topics.

While I understand you are not a medical professional, nor have received any form of medical training Mr. President…you only need do a simple internet search on an internet browser of your choosing…. to read about the extensive life changing effects of Traumatic Brain Injury.

These medical facts are documented by a multitude of research/studies, medical professionals/experts, well respected organizations, survivors, and our very own Military.

Please understand, how recently, you painted an illustrative picture to the world about your seemingly misguided and uninformed statement about the lack of seriousness brain injuries cause.

Mr. President the potential life changing affects of Brain Injuries (also called Concussions by those not aware of the proper updated terminology) are VERY SERIOUS.

I was listening to your statements of ……..

[Mr. President] “No, I heard that they had headaches, and a couple of other things, but I would say, and I can report, it’s not very serious,”

[reporter asks] “So you don’t consider potential traumatic brain injury serious?”

[Mr. President] “They told me about it numerous days later, you’d have to ask Department of Defense, “I don’t consider them very serious injuries relative to other injuries that I’ve seen.”

“I’ve seen what Iran has done with their roadside bombs to our troops. I’ve seen people with no legs and with no arms. I’ve seen people that were horribly, horribly injured in that area, that war,” Trump said.

“No, I do not consider that to be bad injuries, no,”

Mr. President, I feel it imperative to provide you with the proper information on the campaign to bring global awareness to the effects of Brain Injuries. Awareness that even the White House seems to be in much need of….. so as to represent the dire importance of presenting the consequences accurately to the masses.

The effects of Brain Injuries can be long lasting or even permanent. While recovery and rehabilitation are possible, most people with brain injuries will face life challenges that will require them to adapt and adjust to a new reality where permanent physical or mental disability, and sometimes even death are the very real SERIOUS EFFECTS of their lives after sustaining that injury (or series of injuries). Even patients who appear to fully recover after treatment and rehabilitation may have some long-term symptoms that never go away or fully resolve. These changes may cause an inability to return to their life in the same capacity that they had before their injury.

Indeed Mr. President, injuries to the body, whether visible or not visible, can be equally life changing.

The statement you gave was partially correct in as one of the many symptoms of brain injury does include “headache”…..however there is so much more.

SOME of the other changes other than headaches include an alteration in:

physical realm (sleep, hormonal, neurological, balance, nervous system, endocrine system, appetite, fatigue, etc);

an alteration in cognitive processes ( memory issues, distractability, impulsiveness, mood disorders, language, mental processing time, confusion, etc);

an alteration of senses (sight, vision, phtophobia, double vision, smell, taste, hearing, tinnitus (ringing in ears): aphasia (difficulty with talking or expressing ideas, understanding everyday language, and problems with reading and writing),

and development of PTS (post traumatic stress) and PTSD (post traumatic stress disorder) can also be present along with, or secondary to, the brain inury or polytrauma event(s).

[not an exhaustive list by any means]

Mr. President, despite the amazing advances in medicine, research by scientists, and active steps taken to develop treatment plans by our own Military; there are still more discoveries to be made and more work to be done.

Devotion of time and much needed funds, resources, and bipartisan support is still necessary to bring awareness and education about brain injuries to the forefront by not only you, but our other Leaders in our Government, private, and public sectors .

We must recognize this as a valuable opportunity to address this as what it actually is….a call to action about this – an International medical crisis.

We must figure out how best to treat those with Brain injuries, help them live their best lives, and be open to various methodologies and alternative sources of therapies that are allowed and covered by our insurance companies as to support the best outcomes.

Mr. President, you must know as soon as possible that despite early diagnosis and treatment of Brain Injuries, the fact remains that brain injury will be a life-changing experience for many patients.

So….in a word Sir….S E R I O U S !

HOPE for Life,
Caren Robinson – United States Citizen
Polytrauma and Brain Injury Survivor

https://www.cnn.com/2020/01/22/politics/trump-us-service-members-traumatic-brain-injuries/index.html?utm_source=fbCNN&utm_content=2020-01-22T14%3A40%3A11&utm_term=link&utm_medium=social

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!

Improve Awareness and Understanding of Brain Injury

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

Vision and Sensory Center

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

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

Menses and Sexual Changes – A Taboo or Overlooked Topic After TBI and Trauma

So hello there soul searchers.  There has been a lot going on with my body and my life over the last 3 years.  I have gone from calling it “my wreck” to “the wreck”.   For the longest time it called it “my wreck” because it was something that had happened to ME.  However, in my effort to step outside of myself and towards recovery away from a “patient” status and more of an “advocate” and “self-advocate” status – I want to try and keep myself somewhat separated from it as I do red brainsnot own it as my own, but rather something I experienced.

Anywhooooo, that being said, I have definitely been forced out of my comfort zone the last 3+ years with my body.  I have learned to get naked, show owies, show scars, and talk about taboo topics with specialists, providers, and support teams to the point that I can pretty much talk about any topic regarding my body without it being a “hush” topic.  In fact, in this whole time since my wreck noone asked me about my menses, aside from my previous PCP Dr. Mathias (a staunch adovocate for me) who I think at this point I have Martyrized since she moved out of State….or ….I should add, noone that I remember anyway. I gotta allow room there for that possibility.  I can say though, that if anyone asked, they never did anything about following up on it.

The body is a marvelous piece of art and machinery. For a woman, when she experiences a great bodily trauma, especially involving a Traumatic Brain Injury (which is a different recovery process for a guy by the way – sorry guys) – there is a whole host of things that come into play that most doctors and specialists do not even address, though it is absolutely critical to do so.

Did you know?  Now here is where it gets super personal so you may not want to read past this point…….

My menses was mostly irregularly-regular before the wreck.  I was due to start my menses between January 7-10, 2014.  I was in the wreck on January 4, 2014.  Now you Blood cellsmay be thinking wow thanks for sharing information I didn’t need to know.  Why does this matter to me as a reader?  Good question!!!

Did you know that I did not get my menses between the 7-10 of January?  In fact I didn’t get any menses at all until mid July 2014 which was not a full cycle of days for me.  Then I skipped some months then a couple of months I had my menses THREE times….(yeah that was a pain to deal with as I had someone doing all my pericare at that point still) in ONE month.  Then a month with only a two day cycle and missed more months and this continued for about 2 years or so.  It wasn’t until late 2016 I started to get back to a somewhat predictable cycle.

Did you know what during this whole time in 2014 and part of 2015 I was losing handfulls of hair, like literal handfulls and my hair started thinning out.  I had no apetite, no liido and lost just about 55lbs in a 10 month span of time.  My medical record documents me bringing all these issues to my providers.  Like literally all of them.  Noone knew what to say except sometimes the body “just does that”.  

Well, except Dr. Mathias, PCP who said she felt I most likely had hypopituitarism and hypogonadism and that my pituitary and hypothalmus had been damaged by the Traumatic Brain Injury.  She suggested I make contact with a Neuroendocrinologist.  Lo and behold, no Neuroendocrinologist in the whole State of Michigan….go figure.

My weight held and I even lost a little more until the Spring of 2015 when suddenly over about a 3-4 month span of time I gained nearly 50lbs back and then another 10 then 18lbs subsequently.  I then started growing hair in places that hair shouldn’t grow on a female and I was mortified.  What was happening with my body.  I still had little appetite and I don’t remember the last time up until that point that food sounded interesting at all.  

My thyroid labs and other labs were all over the place, yet noone thought to check these the whole time I was hospitalized (nearly 4.5 months).  Even though my medical records showed a preexisting Hypothryoidism, noone ever did a thryroid panel on me – isn’t that bizarre?  

hormones

I have been battling many neuroendocrine changes as a direct result of my Traumatic Brain Injury and bodily trauma from the wreck and nobody did due diligence to catch this.  Yet all my symptoms were documented in my records.  Documented but not followed through on.  Again, bizarre!

Recently in an online support group someone brought up that they hadn’t had their menses for months since their TBI and wanted to know if anyone had experienced such a phenomenon.  Suddenly the comments came flying in.  I was astounded.  Then I started to research.  

How different would my rehabilitation plan have been, if I was tested properly, with some pretty basic and inexpensive blood work while hospitalized?  I can tell you that I have been chronically anemic since then.  My labs are still all over the place with a lot of things.  When I brought this up to a recent provider, they said they didn’t think my menses stopping had anything to do with the wreck and they couldn’t explain the hair loss and other symptoms – that it was just “coincidence”.  Wow – really?  Turns out they couldn’t have been more wrong.

Here is a link to the compilation of the research I did regarding this very topic:

https://hopetbi.com/traumatic-brain-injury-and-endocrine-changes/menses-and-sexual-changes-in-women-after-trauma/

As it turns out, there are a lot more studies out there than I could even begin to fathom.  So why was something so well studied still not a matter of automatic testing in a level 1 trauma center of all places…or beyond?  

As it turns out, me being within 2 weeks of starting my menses (within 3-6 days of it actually) is absolutely clinically significant regarding my rehabilitation overall.  See link to see why…….

Amazing stuff…..the search continues!

Please comment below and share this post with someone. Let’s spread the word and bring awareness.

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.