Breast Cancer

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    Here’s a long paragraph. Here we go: Just because cancer is “over,” that doesn’t mean it’s “over.” Mighty contributor Louise Pascut shares 10 things that help her thrive while living with breast cancer and its after-effects. — on The Mighty

    “For a cancer patient, this is what their new normal looks like.” Here’s what it’s like going down the rabbit hole of “Cancerland.” — on The Mighty

    Just because cancer is “over,” that doesn’t mean it’s “over.” Mighty contributor Louise Pascut shares 10 things that help her thrive while living with breast cancer and its after-effects. — on The Mighty

    “For a cancer patient, this is what their new normal looks like.” Here’s what it’s like going down the rabbit hole of “Cancerland.” — on The Mighty

    Daniel Graups

    Chronic Pain, Disability, Ehlers Danlos Syndrome

    Anxiety Depression Mental Health Bipolar Disorder Chronic Pain Autism Fibromyalgia Borderline Personality Disorder Disability Migraine Rare Disease Rheumatoid Arthritis Epilepsy Cancer Chronic Illness Down Syndrome Crohns Disease Multiple Sclerosis PTSD Staff Breast Cancer Lyme Disease Suicide News Check In With Me Parenting 52 Small Things Ehlers Danlos Syndrome Eating Disorders Lung Cancer Mental Health, Chronic Pain, Disability, Chronic Illness, Ehlers Danlos Syndrome, Suicide, Parenting, Eating Disorders, Rare Disease

    Daniel Graups

    Breast Cancer Breast Cancer - Inflammatory

    1p36 Deletion Syndrome (Monosomy 1p36) 5 #52SmallThings: A Weekly Self-Care Challenge A Acanthamoeba Keratitis Achalasia Achondroplasia Acute Disseminated Encephalomyelitis Acute Intermittent Porphyria Acute Stress Disorder Addiction Addison’s Disease Adenomyosis ADHD/ADD Adie’s Pupil Adjustment Disorder Adrenal Cancer Adrenal Insufficiency Adrenoleukodystrophy Agammaglobulinemia Agenesis of the Corpus Callosum Agoraphobia Aicardi-Goutieres Syndrome Disorder Aicardi Syndrome Alagille Syndrome Albinism Alcohol Dependence Alexander Disease Allan-Herndon-Dudley Syndrome Alopecia Areata Alpha-1 Antitrypsin Deficiency ALS (Lou Gehrig’s Disease) Alternating Hemiplegia Alzheimer’s Disease Amniotic Band Syndrome Amyloidosis Anal Cancer Anaphylaxis Anencephaly Aneurysm Angelman Syndrome Ankylosing Spondylitis Anorexia Nervosa Antiphospholipid Syndrome Antisocial Personality Disorder Anxiety Apert Syndrome Aphantasia Aphasia Apraxia Arachnoiditis Arnold-Chiari Malformation Arrhythmia Arteriovenous Malformation Arthritis Arthrogryposis Arthrogryposis Multiplex Congenita Asperger’s Syndrome Asthma Ataxia Auditory Processing Disorder Autism Spectrum Disorder Autoimmune Autonomic Ganglionopathy Autoimmune Hepatitis Autoimmune Immunodeficiency Autoimmune Thyroid Disease Autoimmune Urticaria Autonomic Dysfunction Autonomic Dysreflexia Avascular Necrosis Avoidant Personality Disorder B Babesiosis Back Pain Bardet-Biedl Syndrome Barth Syndrome Batten Disease Beckwith-Wiedemann Syndrome Behcet’s Disease Bell’s Palsy Benign Intracranial Hypertension Benign Paroxysmal Positional Vertigo Beta Thalassemia Bile Duct Cancer Biliary Atresia Binge Eating Disorder Bipolar Depression Bipolar Disorder Birth Defect Bladder Cancer Blindness Blood Cancer Blount’s Disease Body Dysmorphic Disorder Bohring-Opitz Syndrome Bone Cancer Borderline Personality Disorder Brachial Plexus Injuries Brain and Spinal Tumors Brain Aneurysm Brain Injury Brain Tumor Breast Cancer Breast Cancer – Inflammatory Bronchiectasis Brown-Vialetto-Van Laere Syndrome Bulbospinal Muscular Atrophy Bulimia Nervosa C Canavan Disease Cancer Cantú Syndrome Carcinoid Tumor Cardiofaciocutaneous Syndrome Cardiomyopathy Carpal Tunnel Syndrome Caudal Regression Syndrome Cavernomas Cavernous Angioma CDKL5 Disorder Celiac Disease Central Core Disease Central Pain Syndrome Central Sensitization Syndrome Cerebellar Degeneration Cerebellar Vestibular Disorder Cerebral Palsy Cerebrocostomandibular Syndrome Cervical Cancer Charcot-Marie-Tooth Disease CHARGE Syndrome Chiari Malformation Child Loss Childhood Cancer Childhood Disorders

    Community Voices

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    1p36 Deletion Syndrome (Monosomy 1p36) 5 #52SmallThings: A Weekly Self-Care Challenge A #AcanthamoebaKeratitis #Achalasia #Achondroplasia #AcuteDisseminatedEncephalomyelitis #AcuteIntermittentPorphyria #AcuteStressDisorder #Addiction #AddisonsDisease Adenomyosis #ADHD #AdiesPupil Adjustment Disorder #AdrenalCancer #AdrenalInsufficiency #Adrenoleukodystrophy #Agammaglobulinemia #AgenesisOfTheCorpusCallosum #Agoraphobia #AicardiGoutieresSyndromeDisorder #AicardiSyndrome #AlagilleSyndrome #Albinism #AlcoholDependence #AlexanderDisease #AllanHerndonDudleySyndrome #AlopeciaAreata #Alpha1AntitrypsinDeficiency ALS (Lou Gehrig's #Disease) #AlternatingHemiplegia #AlzheimersDisease #AmnioticBandSyndrome #Amyloidosis #AnalCancer #Anaphylaxis #Anencephaly #Aneurysm #AngelmanSyndrome #AnkylosingSpondylitis #AnorexiaNervosa #AntiphospholipidSyndrome #AntisocialPersonalityDisorder #Anxiety #ApertSyndrome #Aphantasia #Aphasia #Apraxia #Arachnoiditis #ArnoldChiariMalformation #Arrhythmia #ArteriovenousMalformation #Arthritis #Arthrogryposis #ArthrogryposisMultiplexCongenita #AspergersSyndrome #Asthma #Ataxia #AuditoryProcessingDisorder #Autism Spectrum Disorder #AutoimmuneAutonomicGanglionopathy #AutoimmuneHepatitis #AutoimmuneImmunodeficiency #AutoimmuneThyroidDisease #AutoimmuneUrticaria #AutonomicDysfunction #AutonomicDysreflexia #AvascularNecrosis #AvoidantPersonalityDisorder B #Babesiosis #BackPain #BardetBiedlSyndrome #BarthSyndrome #BattenDisease #BeckwithWiedemannSyndrome #BehcetsDisease #BellsPalsy #BenignIntracranialHypertension #BenignParoxysmalPositionalVertigo #BetaThalassemia #BileDuctCancer #BiliaryAtresia #BingeEatingDisorder #BipolarDisorder #Depression #BipolarDisorder #BirthDefect #BladderCancer #Blindness #BloodCancer #BlountsDisease #BodyDysmorphicDisorder #BohringOpitzSyndrome #BoneCancer #BorderlinePersonalityDisorder #BrachialPlexusInjuries #BrainAndSpinalTumors #BrainAneurysm #BrainInjury #BrainTumor #BreastCancer #BreastCancerInflammatory #Bronchiectasis #BrownVialettoVanLaereSyndrome #BulbospinalMuscularAtrophy #BulimiaNervosa C #CanavanDisease #Cancer #CantuSyndrome #CarcinoidTumor #CardiofaciocutaneousSyndrome #Cardiomyopathy #CarpalTunnelSyndrome #CaudalRegressionSyndrome #Cavernomas #CavernousAngioma #Cdkl5Disorder #CeliacDisease #CentralCoreDisease #CentralPainSyndrome #CentralSensitizationSyndrome #CerebellarDegeneration #CerebellarVestibularDisorder #CerebralPalsy #CerebrocostomandibularSyndrome #CervicalCancer #CharcotMarieToothDisease #ChargeSyndrome #ChiariMalformation Child Loss #ChildhoodCancer Childhood Disorders

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    Community Voices

    Here's a story about how my life got turned upside down

    I quit my job today. Not the first time and probably not the last time either. I literally said I don’t want to work here anymore and I left. Nobody tried to stop me, nobody asked me to come back or if I was okay. Nobody cared. I drove straight to my mothers office. Fight or flight usually ends in flight with me and almost always ends up on my mothers lap. I’d be lost without her. She of course knew what was going on as I ran into her office hysterically crying and instantly embraced me. Is there anything better than a mothers hug? Not really for me. She took me into a private room where we could talk and listened to my whole story through all the sobbing. By now she is pretty good at knowing what I am saying even when I am hysterical. My job was perfect, so I thought in the beginning. I started in May which is probably my favorite month of the year. It was two months exactly before my wedding day. Everyone was so welcoming and helpful. Being a fast learner I soon went from part time front desk to full time training specialist. Which was great since my husbands well paying job that had kept us afloat for so long was coming to an end. A year into my job my grammy got sick with #Cancer#Cancer of everything. She battled #BreastCancer#BreastCancer all my life and was such an incredible strong woman. This new cancer spread fast and even though she got all the treatments she faded quickly. About twice a week I would go to her house which was less than a mile from my office and help her in her wheelchair, into her car, buckle her in, make sure she was comfortable and watch her go off to treatment. My mother would meet her and my grandfather at the hospital and help them there then she would call me and say they are on the way home and I’d meet them back at their house, help her out of the car, into the wheelchair, into the house, into her chair. Make sure she had something to eat and drink, then head back to work. That lasted a for months but then the Dr. said the treatments weren’t helping and there was nothing they further they could do. So we just spent all the time we could together. She mostly stayed in her bed and I would go over and lay in bed with her and talk with her while she played with my hair and told me about her life travels and how I need to travel while I am young, before its too late. Then one day she couldn’t make it to the bathroom, even with the help of my aunt. I arrived while they were struggling and we just couldn’t do it alone. We had to call hospice. Me, my mother, my aunt, and my cousin all stayed at her side the last week of her life. It was the hardest thing I’ve ever experienced. It’s not something I wish anyone to go through. I returned to work the week after her funeral. I was inconsolable. My dearest grammy was lost forever. I did not know how to deal with the #Grief#Grief. I started making mistakes at work, i was distraught and distracted. I had hysterical fits almost every day. I couldn’t stop thinking about how I would never see her beautiful face again. So I started on a very strong anti-depressant. Stronger than the one I’ve always taken for my #Depression#Depression and #Anxiety#Anxiety. It helped with the hysterical fits but I found my memory playing tricks on me. I had to stay on it though, there was no going back to the hysteria. I’ve always had a strong sense of others emotions and energies. I am very aware when someone stops liking me and I am unable to hide my own feelings. I wear them on my sleeve because that is the only way I know how. People noticed of course when I ceased to be my happy bubbly self. I began being left out of things at work, conversations, fun little breaks I was used to in the past. I no longer felt welcome to participate in the lives of my once very fond of me bosses. I started getting in trouble for making mistakes, told I needed to get my act together; told I was making the company look bad. I tried and tried to be the old me but she was gone. The new me made mistakes, and got micromanaged and eventually bullied and outcast. Several times I tried to plead my case to my bosses, I told them I was grieving and I was getting help. They continued to harass me and leave me out of things. this only made my mistakes happen more often. I began looking for a new job, a new start and some of my coworkers were as well. They too had been treated poorly and wanted out. Months passed and today I was called into the bosses office where I was told things such as people are supposed to get better at their job over time not worse and why are you still working here if you aren’t happy? When I told them I felt unliked and outcast they practically laughed in my face. Told me I was creating a negative environment and this isn’t highschool, we are your bosses. I guess that gives them the right to treat me like dirt? After a good half hour of being harassed by them and made felt ridiculous for any feelings I had, I couldn’t take it anymore. I said I don’t want to work here anymore and I walked out of the office. I went to my desk, I grabbed my things and I got in my jeep and drove straight to my mothers office. Nobody stopped me, nobody asked if I was coming back, nobody cared. I thought I’d feel better knowing I never have to go back to that negative space but I just feel sad. I feel like those people will never learn or care. I also feel sad that they have no clue about the pains of my depression. No idea that some days I felt like dying would be better than dealing with the depression. They have no idea what it’s like to be me and they never took a chance to hear me out or offer help. And that to me is just so sad. I’m sad that they will continue to bully others that come to work there after me and that they will never truly know what its like to be good bosses.

    Community Voices

    Depression needed a voice...so I lent mine

    #Depression needs a symbol too, so I designed these bracelets By Lisa Hughes – For The Mighty
    March 20, 2017 My name is Lisa and I live with depression.
    Some days are hard — like, “I can’t find the energy to breathe” hard. While other days I almost forget about it and am surprised by how easily the day seems to pass.
    But whether it’s smacking me in the face, or hanging out on my periphery, I am constantly trying to keep depression from parking over my head and in my heart. Because when it parks, it can stay for a while.
    In the fall of 2013, a depressive episode caught me by surprise. I thought I had dealt with it. I had gone to therapy for years and learned tools to manage. One of them was yoga, which I embraced, becoming a certified instructor (a practice that I continue to this day).
    So when the 2013 episode hit, I was shocked and angry. There was absolutely no reason for this to be happening. I had experienced no trauma. I had two healthy kids and a loving husband. A generous family. I had the best life.
    Once the shock wore off, the anger deepened. The type of anger that creates a fire inside your body. I got mad that it wasn’t going away. I got even madder after I told a select few friends and they reacted by saying things like “Oh, it could be worse, you’ve had so much opportunity,” or “Just take a nap. You’ll feel better when you get up.” I began to feel like it was more socially acceptable to be an alcoholic than it was to suffer from . It didn’t make sense to me.
    What I eventually realized was that most people just didn’t understand . And I realized I was glad that they didn’t understand; I wouldn’t wish this on anyone. However, it made me feel even more alone. I knew I couldn’t be the only person in this situation.
    So, I decided to channel this anger into creativity. I wanted to share my experience with others, and I wanted a symbol that united us all. Just like #BreastCancer survivors have the universally-recognized pink ribbons and those touched by AIDS have red ribbons, I wanted a symbol for . I searched the internet over and over but I couldn’t find a thing. So I came up with the idea to make Depression Awareness Bracelets. With the help of my friend, artist Wendy Glaess, I designed my own logo, an enso, which in Zen Buddhism, is a circle that is hand-drawn in one or two uninhibited brushstrokes to express a moment when the mind is free to let the body create. I used my brushstroke to create the enso symbol and then added a tear drop inside. For me, it symbolizes enlightenment hugging sadness.
    I stamped the enso symbol on a dark brown leather band and then secured it with a brass buckle. The Depression Awareness Bracelets were born. It’s a simple and stylish accessory, fit for a woman or a man. I now make each bracelet by hand in my small studio in my home in Rochester, New York. I have received orders from all over the country. I even got it trademarked! I donate 10 percent of the proceeds from the bracelet sales to the Mental Health Association.
    I created the website www.DepressionBracelets.com to sell the bracelets, but it has turned into so much more, a community really. It now includes a blog and a photo project I call The FACE Photo Project. The photo project is an ongoing series of portraits that I have taken of people I know who are touched by . The project allows me to indulge my love of photography, while allowing others who struggle like I do to join me in trying to take away the shame and stigmas associated with .
    My objective for these various initiatives is to let people know they are not alone, and to know that if we all step out of hiding, we can see each other, and then be pillars of support. Hearing others’ stories about and sharing mine helps to make me feel so-not-alone. When you hide, there is shame. Stepping out of hiding eliminates this shame. It brings acceptance, and with it a community that understands. The bracelet has become a conversation starter, an opportunity to move past the shame. If we could be more open, we could feel less alone.
    My dream is that one day I will be walking through a grocery store, or picking up my kids from school, and that I will see someone else wearing the bracelet. Without saying a word, we notice one another. Eye contact is made and we get each other. We know. We connect.
    Awareness Bracelets are available for purchase here:
    http://www.depressionbracelets.com/
    10% of proceeds from all bracelet sales are donated to the Mental Health Association.

    Community Voices

    Why You Should Care about Autism Awareness

    Autism
    Awareness Month is here and for most of you, this is yet another cause in the
    convoluted calendar of month-long observances –   #BreastCancer#BreastCancer…World Aids
    Day… Food Allergy… Alzheimers. .. LGBT… #Suicide#Suicide Prevention…  Rabies…
    #Stuttering#Stuttering.
    Unless a
    particular  health concern affects you
    personally, I would guess this is all just noise.  Sure, you may have run
    a 5k for #MultipleSclerosis#MultipleSclerosis or rounded your credit card bill up to the next
    dollar to contribute towards Feeding America.  You bought that bright pink
    Swell bottle in honor of Breast Cancer Awareness month in October.  Even
    the NFL Rocks pink cleats in October.  
    However,
    the “awareness’ has developed into opportunities for monetary, tangible
    donations rather than initiating or educating the public on the cause and why
    you should give a damn.   Of course foundations need the capital to
    move forward with research and development, but the constant parade of these
    fundraisers can be daunting. For me, autism
    became more than just a colorful bumper sticker, (shaped like a ribbon holding
    puzzle pieces) nearly 3 years ago, when my instinct (followed by a diagnosis)
    told me my 1 year-old son was on the spectrum.  That instinct was followed
    by an obsessive consumption in educating myself beyond the little knowledge or
    should I say ‘stereotypes’ that I possessed about autism, such as  the
    social awkwardness, lack of empathy, savant-like abilities, Rainman.  When a health
    concern infiltrates you or a loved one, you better believe that cause becomes
    more than relevant.  
    I have to care about
    .  My son’s success depends upon it.   So why should you care? Let me
    drop those stats. Prevalence is 1 out of 68 people, reported by the CDC in
    2016.  1 out of 42 boys.  That is 3.5 million+ individuals in the
    US.   And for the first time this year, the prevalence did NOT
    increase.   At this frequency, you will meet and know someone
    affected by (if you don’t already).
    Sesame
    Street thought it was so important that they welcomed a new Muppet, Julia, to
    their cast this year.  It’s kind of a big deal.   Autism has
    become so mainstream that a character was introduced into the Big Bird and Elmo
    crew.  Julia, I trust that you will broaden those social boundaries that
    are currently deemed as weird.  Arm flapping, spinning in circles,
    sensitivity to textures or loud sounds, repetitively opening and closing a
    door, asking the same question 7 times in a row and ignoring the answer.
    Yes, this behavior is unusual which is why autistic children have
    been bullied and ostracized for decades.  Julia has taken on the
    influential role as a public figure to educate the Sesame Street audience, both
    children and parents, about .  Normalizing is an ambitious goal
    and I am completely onboard, but familiarizing children to the disorder is an
    important first step.  The ABC’s are an essential skill for our children
    to learn, but so is empathy, tolerance, and embracing others with
    differences.  If you think kids won’t “get” Julia, you are underestimating
    your child’s intelligence. is
    not curable.   There is no surgery, medication, or therapy that will
    erase this neurological disorder.    It won’t go into remission
    and it can’t be avoided by adhering to a specific diet, exercise regimen, or
    abstinence of habit.
    In 2015, ’s cost to society
    was expected to top around $265 billion.  This number is only bound to
    grow. What
    are you paying for?  For one, educational resources.  IDEA
    (Individuals with Disabilities Educational Act) ensures that students with
    disabilities are provided with a free education.  Last week, the Supreme
    Court ruled in favor of a special education student (www.npr.org/sections/ed/2017/03/22/521094752/the-supreme-cou...).
    This decision will reflect all children that need IEP’s, as it requires a tailored
    program to meet the specific needs of each student.  A plan may call for a
    simple 30 minutes of speech therapy per week or the necessity for the student
    to be transported to a private, specialized school for an education.  The
    escalated cost for any of these services is dependent upon federal and state
    funding (aka taxpayer).   · Another education topic—the
    inclusion classroom (special education students being integrated into a general
    classroom setting).  This model is becoming very common in the public
    school systems, and while I strongly support the concept, I also believe that
    teachers need the appropriate training along with support (additional aides or
    assistants) for it to be successful for ALL students.   If your child
    doesn’t require an IEP, the quality of their education can still be impacted by
    the resources (or lack of) that are available in the classroom.  Simply
    put, the public school system is underfunded and overwhelmed. This is my PSA
    for you to pay attention to any legislature regarding special education.
    Vote for public officials who care about improving the quality of education for
    ALL our children,  #Disability#Disability or not. Other costs to consider include
    residential and In-home care, along with employment and medical support.
    Recent surveys from the National Autistic Society showed only 32% of autistic
    adults are employed and only half of those are working full time.
    That leaves over 2 million without  ANY type of work, which is equivalent to the
    entire population of New Mexico.  Recently, companies, which include
    Microsoft, SAP, Ernst & Young, Hewlett Packard and JP Morgan, have made an
    initiative to hire people on the spectrum claiming they are looking to
    create a “neurodiverse” workforce.   Let’s be real—these companies
    are hiring the highly-functioning Aspies that have been employed in Silicon
    Valley for years prior.  Be aware that 2 million people account for a large
    majority of the unemployed adults in the US, which was 7.5 million altogether
    in February of 2017.
    President
    Trump has demonstrated an interest in .  During the debates, he
    professed his belief that vaccinations are the cause of the “epidemic.”
    Obviously he is Team Anti-Vax, a stance which is quite dangerous for the leader
    of our country to pronounce to the world.
    That belief originates from ONE study conducted by doctor Andrew
    Wakefield in 1998. Trump has appointed and surrounded himself with staff who
    are not advocates of special education.  Yes,
    I’m looking at you, Betsy DeVos.  Although no legislation has officially
    been passed that will affect the community, I will be paying attention
    to every move he makes for the next 4 years.  I’m wary to entrust a man
    who blatantly mocked a disabled reporter and have mercy on those policymakers
    who decide to oppose special education rights.  and special needs
    parents are resilient warriors.  They won’t go down without putting in the
    good fight to obtain justice. Our world is still trying to
    understand itself. Scientists continue to probe into the causes.
    Educators and doctors learn through trial and error the most successful
    treatments and interventions.  Advocates
    and politicians decide on what policies and environments will build the
    framework for those on the spectrum to succeed.  The experts keep
    persevering, and is our humankind.  Your grocery cashier, the man
    who spots you at the gym, the boy on your son’s lacrosse team, the Starbuck’s
    barista who remembers your order of a Double Shot Skinny Latte.  
    Four years ago, I probably would
    have passed over this post. was a disorder that affected other people,
    but not me.  There was no chance my child was going to be that 1 out of
    68. Now, there isn’t a day that goes by that doesn’t cross my mind.
    I’m reminded when I put my son on the bus so he can attend his PreK inclusion
    classroom, or when he’s frantically searching for the yellow soccer ball he has
    to constantly carry in his hand 24/7.   I’m reminded when he refuses
    to eat a Goldfish because of its crunchy texture, or when I find him overly
    transfixed with his shadow.  My son is
    rambunctious, cheerful, perceptive, a nurturing brother to his siblings—truly a
    sweet child.   I feel ashamed and appalled that I didn’t want that
    part of him.  That autistic part.   isn’t something you are
    trying to avoid or pity.  isn’t the justification you attribute
    towards your colleague who won’t make direct eye contact.  is just
    a piece of what comprises an individual.
    You know that ‘weird ‘ kid that lives in the white
    house with red shutters down the street?  That ‘weird’ may be the uncontrollable,
    innate piece of him.
    This month make a special effort
    to reach out to someone with .   It
    may be the beginning of a meaningful, divine relationship for both of you.