Aplastic Anemia

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    Normalcy

    I like to think that I’m “normal” now. After all, I don’t have aplastic anemia, and I don’t have Hepatitis C that I got from a blood transfusion while trying to get rid of the aplastic anemia. I don’t have any obvious side effects from the West Nile. The holes in my ear drums from getting tubes as an adult that cannot be repaired haven’t affected my hearing that much. My weakened immune system isn’t a huge problem anymore now that people are good about self-quarantining when they get sick.

    But then I’ll have an allergy episode that over the course of 24 hours turns into a sinus infection and bronchitis and knocks me on my ass for a week. Then six months will have passed and it’ll be time for me to go get screened for liver cancer from the cirrhosis that long-term chronic Hep C caused before I was able to get it treated. Then a new variant of COVID hits the news and terrifies the world. Those times are when I’m reminded how abnormal I still am, and it bums me out.

    Post

    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

    Polar Warriors | #BipolarDisorder

    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

    Jessica Chelsey | #Lupus

    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

    Invisible I | & Autism

    Ostomy Diaries | Crohn’s disease

    SarahWithStars | #ChronicPain

    Trisha Paytas | BPD & PID

    The Frey life | #CysticFibrosis

    Eyeliner and Empowerment | #CerebralPalsy

    Robyn Lambird | Cerebal Palsy

    But Ya Don’t Look Sick |

    Molly Burke | #RetinitisPigmentosa

    Painful Hilarity |

    Lucy Edwards | #Blindness

    Kelsey Darragh | #TrigeminalNeuralgia

    S

    Themitowarrior | #MitochondrialDisease

    The Killen Clan????

    EMILIA VICTORIA |#Endometriosis

    Kelsey Morris |#HipDysplasia

    Holly Vlogs | Crohn’s Disease

    In The Lyme Life | Lyme Disease

    Kiki Chanel | #CyclicNeutropenia

    Hydrohayley | Hydroceohalus

    This Gathered Nest | Down’s syndrome

    Foolyliving | Autism

    I am still ME

    PerfectlyKnitBeauty| #NeuromyelitisOptica

    Channon Rose | , PTSD, , ADD, Endometriosis

    Ally hardesty | ADHD

    JD Dalton | #Albinism

    ASL Stew | Deaf

    WheelsNoHeels | Spinal Cord Injury

    Rikki Poynter | Deaf

    Kathryn Morgan |Hypothyroidism

    Pain Doctor | Chronic Pain

    CFS Health | ME/CFS

    Young Chronic Pain | Chronic Pain

    MultiplicityAndMe | Dissociative Identity Disorder

    Stephanka | #AplasticAnemia

    DisociDID | Dissociative Identity

    Disorder

    Alivia Marie |

    OhSoAdrianna |

    Amythest Schaber | Autism

    Invisible I | & Autism

    Sitting Pretty Lolo | ALS

    The Mandaville Sisters | One Handed

    Pixiwoo|

    You Look Okay To Me | #ChronicIllness

    Caito Potatoe | Autoimmune #KidneyDisease

    A Thousand Words | Adrenal Fatigue

    Living With Addison’s | Addison’s disease

    Madison Decambra | BPD

    KaraLou |

    The Dale Tribe | Type 1 #Diabetes

    Claire Wineland | Cystic Fibrosis

    Jessica Kellgren-Fozard | HMPP, MCTD & co

    Katie Scarlett Speaks | Chronic Pain

    Just A Skinny Boy | Autism

    Sasha Aimey | Endometriosis & Arthritis

    ALifeLearned | Mental Illness

    Hannah Witton | #UlcerativeColitis

    Georgina’s Journey | POTS & ME/

    AGirlWithLyme | Chronic Lyme

    Olga Chronics |

    Sam&Alyssa | Lupus

    ChronicallySaltyy | & co

    The Files | & co

    Arianna | , & co

    Zebra to Zebra | & co

    Chronically Jenni | & co

    Morgan Grant | & co

    Simply Hannah | , POTS & co

    Abby Sams | , CRPS & co

    Izzy kamblau | & co

    Rebellious Story | & co

    Christina Doherty | & co

    Not Your Average Zebra | & co

    Simon and Martina | & co

    Amy’s Life | & co

    Annie Elainey | & co

    Chronically Kimberly | & co

    Chronically Jaquie | , Mito & co

    Sophie’s Life | & co

    Life With Stripes | & co

    Jordan Bone | Spinal Cord Injury

    Rikki Poynter |Deaf

    IDrankTheSeaWater | Tourette’s & Mental Illness

    Angie and Ruby | Stromme Syndrome

    Josh Sundquist | Amputated Leg

    Anne Spicer | Crohns & gastroparesis

    Sleepy Santosha | Adrenal Insufficency

    Live Hope Lupus | & co

    Emma Blackery| ME

    Yoga My Bed & ME | ME

    Moly Christopher | /ME

    CFShealth | ME

    Bethxxx | ME

    Miss Adventure | ME & mental illnesses

    MegSays | ME

    Ann Twirls | Chronic Pain

    VlogBrothers | & Chronic pain

    Fibro Mom |

    Service Dog Vlogs |

    Chronic illness and disabilities

    The Vlogging Murrays | Preemie & Chronic pain

    Keira Rose | Dermotilonania, Anxiety,

    Beckie brown |

    Trichitilonania

    Maya Imani | Schitzophrenia

    John Green |

    Savannah Brown | Eating Disorder, Anxiety &

    TrichJournal | Body Focused Repetitive Behaviour Disorder &

    Emily Rose |

    Bonitajunita | Trichotilonania

    Allie Malin | Trichotilomania

    TheMaddieBruce |

    Sammy Marie | &

    Madison Decambra |

    Tara Lou |

    Lace & Lashes | Crohns Disease

    Sally Boebelly |

    Crohn’s disease

    Ashley Jeneatte| Crohns Disease

    Abby Green Osteogenosis Imperfecta

    Post
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    Not All Disability is Visible

    ♥️🧡💛💚💙💜
    Warning Long Message. Please take time to read. Thank you
    I wish more people understood...
    What she has is not a cold or the flu. She will never get better. A nap won't help. She is not lazy but she is tired to the point of a lethargic state. She's on meds to try to make it easier to thrive and merely survive. Many people say that she's faking it or that she just needs to push through it. Well sometimes she can push through the pain and live her life, but there are days where she can't walk without having to hold on to something. Her joints hurt. Her body hurts. Her mood varies, and she is sad a lot. She tries to control her mood swings and intermittent bouts of depression. She takes her meds daily, and more vitamins than you could fathom, to help keep her up but most days nothing works.

    She has an autoimmune disease.🦄

    I'm watching those of you who will take the time to read this all the way to the end.

    🌺To see who reads and who shares without reading please, in honor of someone who is fighting MS, Chronic Lyme Disease, Dermatomyositis, Lupus, Graves Disease, Scleroderma, Ulcerative Colitis, Fibromyalgia, Sjogren's syndrome, Crohn's, Sarcoidosis, Osteoarthritis, Rheumatoid Arthritis, Celiac, Hashimotos Thyroiditis, PBC, CIDP, Aplastic Anemia, Psoriasis, Psoriatic Arthritis, Takayasu's Arthritis or any other autoimmune disease...🌺

    Copy and paste this to your wall, do not share.

    Write "Done" in the comments after you have done so.

    Do this as a sign of your love and support for everyone you know fighting this battle.
    Many of my friends and family are struggling with autoimmune disorders!!! 🌈

    #NotAllDisabilityIsVisible
    #WeAreAllFightingABattleYouCantSee
    #Bekind

    Question

    Caring for coworker with #AplasticAnemia #RareDisease #Cancer Help!

    Hi
    One of my dear coworkers, and amazing person, just found out that her cancer is back. I want to show her that I’m here to listen and support her, but I have really bad social phobia and also lost my dad to cancer, so I’m afraid to offer something I can’t stick too (because of my own issues). So I wonder if folks who have lived with , aplastic anemia, or other rare diseases have suggestions of what you found helpful, touching, meaningful.

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    My Daughter has Aplastic Anemia #AplasticAnemia

    Our soon to be 25 year old daughter was diagnosed with Aplastic Anemia looking to connect with other parents who have a child with #aplasticanemiararedisease

    Question

    Our soon to be 25 year old daughter was diagnosed with Aplastic Anemia looking to connect with other parents who have a child with #AplasticAnemia

    #Parenting

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    Oh, really? You don’t look sick

    This is the first time I’m hearing people say just how I’m also feeling. Aplastic Anemia/PNH is not an illness that shows on my face, so when the other hockey moms want me to drive the kids to practice as a single mom more than they drive as married moms, it’s hard to be understood. The fatigue at times would scare me when I drove the crew in the evening. As a single mom of three 28,20,20 yrs old, I’m not sure how I did it all but I did.
    Faith , love for my kids and hope . Not all at the same time but always a little of at least one of these feelings got me through each day. I did not think I would live to see my children grow but here I am, 20 years later. Now what ? Lol that’s the question. This is a whole new ballgame and not sure how to find my place in this new chapter yet.
    #RareAndMighty