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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.

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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

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Themitowarrior | #MitochondrialDisease

The Killen Clan????

EMILIA VICTORIA |#Endometriosis

Kelsey Morris |#HipDysplasia

Holly Vlogs | Crohn’s Disease

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Hydrohayley | Hydroceohalus

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I am still ME

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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

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Abby Sams | , CRPS & co

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Christina Doherty | & co

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Simon and Martina | & co

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Chronically Kimberly | & co

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Life With Stripes | & co

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Rikki Poynter |Deaf

IDrankTheSeaWater | Tourette’s & Mental Illness

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Josh Sundquist | Amputated Leg

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Sleepy Santosha | Adrenal Insufficency

Live Hope Lupus | & co

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Bethxxx | ME

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VlogBrothers | & Chronic pain

Fibro Mom |

Service Dog Vlogs |

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Trichitilonania

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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

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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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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

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I feel like this daily... #AutoimmuneDiseases

Read this.

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!!! ❤

1 comment
Post

Read this.

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!!! ❤

1 comment
Post

disabilities #AutoimmuneDisorder

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!!!