Brain Injury

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    My Daughter's Path to Recovery and Healing After a Brain Injury

    Jenn was a survivor. Sustaining a traumatic brain injury at the age of seventeen, her young body gave her an advantage in the fight for her life. As her mother, I anxiously watched as she fought off death with each breath she took those first few days in the ICU. Fear held a tight grip on my heart as the hours ticked by. Feelings of helplessness in my ability to save my daughter darkened even the brightest day.

    After ten gut-wrenching days, Jenn slowly emerged from her coma, and I looked to a future of normalcy like the one that defined our lives before the accident. Doctors told us that she would most likely have disabilities, but I was not a believer in their prognosis. I expected Jenn to return to her former self within a short period of time.

    Once out of ICU, we relocated Jenn to a rehab facility where she was tasked with relearning all the basic life skills: sitting, walking, and eating. Unfortunately, she exhibited no ability to access the language center in her brain, and this complicated how therapists, her family, and caregivers could help her relearn those skills. This is where Jenn’s unique story began.

    It became evident that Jenn not only wanted to live, but she also wanted to connect with the people around her even if she lacked words. Her quirky personality and friendly disposition soon had her patrolling the hallways in her wheelchair at the rehab facility, smiling and waving to everyone she passed. Engaging with all who came into her pathway, Jenn was on her way to building a life for herself, even though I didn’t recognize it at the time.

    I took on the role of her “fixer.” I oversaw everything about her care and made sure she was given every opportunity to flourish. I held fast to the idea that we only use 10% of our brain’s capacity and new neuropathways develop when old ones are damaged. I have since learned that the 10% rule is a myth, but I didn’t know it at the time. I was determined to help Jenn develop those new pathways and to expand her neuro function into unused areas of her brain. Although there were many professionals involved in her care, I looked beyond their grim explanations and expectations and made it my mission to recapture my original daughter.

    Jenn and I were both working toward rebuilding her life. I didn’t always recognize her efforts and methods, but in time they became clear to me. Her personality and zest for life helped her not only to connect with people but also have an impact on their lives. Her lack of words did not stop her. Through facial expressions, giggles, and eye contact she gave and received the attention she craved. She was engaging in her own unique way and quickly captured the hearts of those around her.

    I wanted Jenn’s life to be fulfilling, exciting and interesting, each day filled with new activities and adventures. When she was relocated to a group home in her second rehabilitation facility, three specific caregivers took my vision for Jenn’s future and made it a reality. They looked beyond basic caregiving by adding humor to daily routines, thinking outside the box to help Jenn learn new skills, and bringing her into their family’s lives to form bonds with their children and extended family members.

    Jenn and I never gave up the fight to bring her life to its fullest potential. We were two determined females on the same path of recovery and healing however different it may have looked at the time. She was the survivor; I was the facilitator. Together, a beautiful story unfolded.

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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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    Before and after brain injury

    I can only hope that I will continue swirling up.

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    THANK YOU SO MUCH... WE HAVE REACHED 1,500 members … and counting! If you haven’t joined us yet we welcome you to join our community!

    Thank you for joining us as we support each other with our multiple health challenges! We appreciate you being a part of our community. This group was started with the intention of being a place where members can empathize with each other, find support and offer support to others. We love watching as this has been happening, but we think we can get even stronger! Please consider commenting or responding to other’s posts and responses even more. Even if it’s just a ❤️ or a 👍... or respond with a comment. This really helps us to feel supported and encourages people to post more.

    Thank you for joining us on our journey so far and we look forward to getting to know you all better in the future.

    Your Multiple Health Challenges Leaders! 💜❤️👍

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #ChronicDailyHeadache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #Headache
    #RareDisease #Asthma #Suicide #Trauma #DistractMe #CeliacDisease #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #ParkinsonsDisease #Autism #AlzheimersDisease #Dementia #BrainInjury

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    I Think About You - Unknown #Poem #BrainInjury #Anxiety #Escape

    I think about you way too much.
    At this point your a nuisance in my head.
    Not only do you cause damage,
    But also inconvenience me.

    Sometimes it’s the whole day.
    Sometimes my mind doesn’t even give you thought.

    I remind myself
    This isn’t anything!
    It shouldn’t be anything!

    But yet, you exist!

    You’ve pierced your talons in me
    So deep,
    there is no time limit on the healing process

    A process that repeatedly gets disrupted
    Only to be punctured
    by the same talons
    who tore me in the first place.

    I’ve learned to patch myself up
    wait for your return
    and fight off the vultures who pass by
    The ones that want to see me loose.
    See me break
    See me cry.

    Maybe they think I owe them
    Maybe they feel entitled
    Maybe they’re just bored
    Either way
    there is no stopping their vicious cycle

    They will remain the same
    Because that is their choice
    That is what they thrive off of

    But see,

    That’s also how you will remain
    Because you thrive off of it
    Because you enjoy to disrupt the calm
    Because you enjoy playing the game

    You are okay with revisiting
    You pretend everything is fine
    You act like it’s not a big deal
    And I,

    Well, I allow it
    And continue to pull myself forward
    as if none of it ever happened

    Yet my scars plead otherwise.

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    Mental Health and Awareness Campaigns

    Part 1 of 2 There certainly are a lot of mental health campaigns going on. There’s one or more in every month. Most of these are “awareness” days, which is a little bit confusing. People who already have the assorted disorders are already aware of them, as are probably their families and perhaps their friends.

    When it comes to awareness, though, most non-affected people (or people who don’t realize they are affected) find out about them through TV commercials – during Men’s Health Month, in ads for medications, or from organizations like the Wounded Warriors Project. There may be local events, too, but I haven’t seen any in my area. I don’t even see much of anything on my Facebook timeline, even though my friends list contains a lot of people with mental health concerns. I note that there isn’t a Women’s Mental Health Month, even though most people who receive treatment for mental illnesses are women. (There are many, many special days not related to mental health that I knew nothing of until I started to research this post, such as World Animal Road Accident Awareness Day, Insect Repellent Awareness Day, and even Spider-Man Day.)

    Here’s what I did find.

    January

    Mental Wellness Month

    February

    Children’s Mental Health Week

    International Boost Self-Esteem Month

    National School Counseling Week

    National Eating Disorders Week

    March

    Self-Harm Awareness Month

    Brain Injury Awareness Month

    World Bipolar Day (which I had never heard of, despite being bipolar myself)

    April

    National Stress Awareness Month

    National Counseling Awareness Month

    May

    Mental Health Awareness Month

    National Maternal Depression Month

    National Borderline Personality Disorder Awareness Month

    Tourette Awareness Month (May into June)

    Children’s Mental Health Awareness Week

    June

    PTSD Awareness Month

    Men’s Mental Health Month

    July

    International Self-Care Day

    BIPOC (or Minority) Mental Health Month

    August

    National Grief Awareness Day

    September

    World Suicide Prevention Day (and National Week and Month)

    October

    World Mental Health Day

    National Depression and Mental Health Screening Month

    ADHD Awareness Week

    OCD Awareness Week

    November

    National Family Caregivers Month

    International Stress Awareness Week

    International Survivors of Suicide Day

    December

    International Day of Persons With Disabilities

    National Stress-Free Family Holidays Month

    So, how are people made aware of most of these various disorders? By people wearing different colors of ribbons that correspond to them. The idea, I guess, is to prompt people to ask, “What is that silver ribbon for?” and to be told, “It’s for Borderline Personality Disorder Awareness.” If the person inquires further, it’s a chance to educate them, but most people don’t ask at all or ask only what the color means.

    There are only a couple of colored ribbons that everyone knows the meaning of – yellow and pink. The yellow ribbon campaign was started in 1979 to show support for persons held hostage in Iran, but now means support for the Armed Forces. The pink ribbon for the Breast Cancer Awareness campaign started in 1991 and is probably the most successful ribbon awareness symbol there is.

    Here are the colors of various ribbons and what #MentalHealth concerns they are intended to promote awareness of.

    Peach – Invisible Illness

    Yellow – Suicide Prevention

    Periwinkle blue – Anorexia Nervosa

    Teal – Agoraphobia, Anxiety Disorders, Dissociative Identity Disorder, OCD, Tourette Syndrome, Stress Disorders, Social Anxiety Disorder, PTSD, Panic Disorder

    Green – Mental Health, Bipolar Disorder, Major Depressive Disorder

    Lime green – Mood Disorders, Psychosis, Depression, Mental Illness, Postpartum Depression, Childhood Depression, Maternal Mental Health

    Purple – Binge Eating Disorder, Bulimia Nervosa, Eating Disorders, Caregiver Appreciation

    Purple and Teal – Suicide, Survivors of Suicide, Family Members of Suicide

    Gray – Personality Disorders

    Orange – ADHD, ADD, Self-Harm

    Silver – Borderline Personality Disorder

    So now you know what color ribbon to wear and what month to wear it in. I hope that if you do, people will ask about it and allow you to expand on what it means. I don’t expect that, however. Almost no one has ever asked me about my semicolon tattoo for Suicide Prevention and Awareness. (I occasionally get to explain it if I point it out to them.)

    Probably the most effective reminders are t-shirts that ident

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    Introduction

    Hi, I’m new to #MightyTogether
    The mighty has published a handful of my articles. I live with a handful of chronic conditions that are really painful and debilitating. I’m looking for others who get it.
    Thanks for having me here. # EDS #BrainInjury #Gastroparesis

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    Life with Tardive Dyskinesia

    hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.

    the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long) beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

    I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.

    (video is placed here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia/)

    My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

    TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

    My pieces that include my early musing on TD: for links go here: beyondmeds.com/2022/09/14/life-with-tardive-dyskinesia

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    Hanging On the Edge: One Man's Perspective on Rock Climbing & the Therapeutic Relationship

    Rock climbing saved my life. When I am on the side of that mountain, I feel more grounded, more alive, and more connected to the Universe. For me, it’s a holy place. This is my church. In my 32 short years on this planet, I have found climbing to be a beautiful metaphor for overcoming the difficulties life throws our way, sometimes.

    In the rock climbing community as in everyday life, we refer to the obstacles we’re working through as “problems”. Although I am tired, hurting, and feel I can’t go on...I don’t give up. I continue pushing through the pain, doubt, and exhaustion until I finally reach the summit. At which point, I can reflect back on all the problems I overcame, the path I took, and what technique I used to get through it. Then, I can feel an overwhelming sense of pride and accomplishment for all my hard work. The next time I encounter a similar problem, I'll know what to do to get past it.

    No one pushed or pulled me up the mountain. All that hard work was mine. The person on the ground belaying me is merely there to provide me with safety, support, and ensure I do not fall, should I stumble. Everything else is up to me. The more I work through my problems, with my friend supporting me on the ground, the stronger I become.

    You see, therapy is a lot like rock climbing. In this allegory or metaphor, you (the climber) are the patient, the mountain is your crisis, the "problems" are all the obstacles that stand between you and overcoming the crisis such as the loss of a job or the death of a loved one or an illness, the summit is mental wellness, and the person belaying you is the therapist.

    While your therapist doesn't tell you how to feel, what to think, or what conclusions to come to, they are there as a constant support to figuratively catch you should you have any setbacks during your journey. They keep you safe and secure by "holding the rope" so that you do not plummet, and so you can resume where you left off whenever you are ready.

    You can absolutely achieve wellness on your own, or "free climb", but the trek will be significantly more difficult, and there will be no one "on the ground" to spot an easier path or remind you of different techniques you can implement to overcome those problem areas. So even though you are the one doing all the work, your therapist is an integral part of your team, who spots the problem areas ahead of time and assists in identifying the various tools you can use to get past them. In essence, they help you work through the problems in this way, without actually pulling or pushing you up the side of the "mountain". This is how you gain the strength and coping tools needed to persevere toward this summit and all future summits. Thus, rock climbing has taught me that when you replace "I" with "we", mental illness truly does become mental wellness❤

    #MentalHealth #CollegeMentalHealth #wellness #CollegeSports #Sports #Therapist #Psychiatrist #ChronicIllnessStigma #EndTheStigma #MentalHealthStigma #BipolarDisorder #Agoraphobia #BrainInjury #Medication #Inspiration #Depression #Addiction #MentalHealthHero