Cyclic Neutropenia

Join the Conversation on
Cyclic Neutropenia
138 people
0 stories
5 posts
About Cyclic Neutropenia
Explore Our Newsletters
What's New in Cyclic Neutropenia
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Contact dermatitis?

Well, this peeling of my fingertips continue. It feels like the entire thumb pad has died- like an orange skin that has rotted, and hardened into leather. No itching, no burning, just terrible throbbing pain. At my wits end. #Dermatitis #CyclicNeutropenia #Fibromyalgia

2 comments
Post
See full photo

𝔻𝕠𝕔𝕦𝕞𝕖𝕟𝕥 𝕪𝕠𝕦𝕣𝕤𝕖𝕝𝕗 𝕒𝕟𝕕 𝕠𝕥𝕙𝕖𝕣𝕤 # #

#Depression #CyclicNeutropenia

Post

Why I should have left sooner

On February 9th, my husband left for a week on an international trip with a colleague. The timing couldn’t have been worse. I have cyclic neutropenia, and after my white blood count dropped to dangerously low levels this past winter, I followed the news on SARS-Cov-2 with an understanding from the start that I was at a higher risk than most people. I also had a lower level of fear than most people who were aware of the threat, because I’ve looked death in the face dozens of times since I was a teenager.

The biggest threat to my well-being right now isn’t an illness. It’s my marriage.

My biggest wish, after almost nine years of asking my husband to treat me with the dignity and respect that every human being deserves, isn’t for him to soothe me with more promises and sugar-coated lies. All I want is for him to leave. Because after years of indifference towards me that began right after the birth of our son, I don’t harbor any delusions of becoming suddenly interesting to him. I married a fictional persona that he created in order to achieve the milestones of marriage and parenthood, in the service of building his persona, his mask, his outward image. A shell. A painted shell where he imprisoned me for years. But seen from the outside, it’s lovely. “You must be so happy together,” everyone says. And I fight back tears of shame and rage.

I am a highly creative, gifted professional, and I’m living with a manipulative, unloving spouse in the age of SARS-Cov-2 lockdowns worldwide. I don’t really want to make excuses for myself, but there are many reasons why I procrastinated getting a divorce. My chronic, complex, invisible illness, my son’s special needs, being an expat living in my husband’s country, his not so credible threats to strip me of everything should I ask for a divorce. My habit of believing in others’ ability to change. My worry that my family of origin will be disappointed in me. My hope that once he finally fell in love with another woman, he’d leave of his own accord. You see, there are situations where proactively seeking a divorce may be the only responsible course of action.

I work in the nutritional therapy field and thus in a service profession. I take care of others day in and day out. I’m so strong and resilient that my best friend used to write letters to me addressing me as “my dear, indestructible Sara” –and yet I live in the silent and invisible burden of a deeply toxic relationship to a manipulative man, who on the surface looks so great that he’s even fooled me multiple times along the way.

I was greatly struggling to breathe starting in early February, and was surviving on a cocktail of pneumonia medications, alongside oral, inhaled, and nebulized steroids in doses high enough to knock out whatever immune function may have been left. None of this mattered to my husband on the eve of his trip. What mattered was trotting around the globe, rubbing shoulders with important people, and getting a piece of his colleague’s ass.

I noticed last October that my husband was carrying on some kind of an affair with another woman. He was working with enormous passion on a volunteer project for his company, and was neglecting his responsibilities at home. He was ignoring me and our son, and complained constantly about how “labor intensive” our daily life activities were. When our house got cold, I took over chopping the wood. He was irritable and distracted, taking calls late at night and sometimes carrying his colleague’s credit card with him in his wallet, or logging into her email, always, of course, because of their joint project.

But an attentive wife almost always knows when her husband is chasing after another woman. And she almost always knows when she’s being lied to. It was only two days before he left on his trip that he broke down and said, “Yes, I admit it. I’m very attracted to her.” He told me he’d been attracted to her for many months and that he wasn’t sure whether or not their relationship would grow into something sexual. When he went to the pharmacy to fill my prescription, he bought a pack of condoms to take with him on his trip. Their trip. Which he paid for with money from our joint account. Without any prior warning to me.

He left me at home, pitifully ill, to carry on with work and caring for our autistic son, while literally fighting for my life, literally struggling to breathe. He wrote me daily emails about his trip, the important contacts he was making, the lovely time he was having with his colleague. Only on day five of the trip did he ask me how I was feeling, as a sort of timid afterthought to yet another email that was all about him. He didn’t read or respond to my response, either.

I won’t lie to you. I was hurt and jealous when I saw that he was emotionally and romantically involved with someone else. I was angry when I saw that he’d spent a lot of money from our joint account on their trip. And yet I was also relieved at his absence, as if a tight noose around my neck had been loosenened.

While he was gone, I met with a lawyer, to find out how to file for separation and to get the process started. Because as much as I hoped that he’d never come back, I knew he probably would, at least temporarily. Because while he’s never cared much about me and I haven’t much mattered to him, I provide him with continuity and security. He benefited from my unwavering responsibility and fidelity. Our home is like the parking lot where he rests in between one adventure and the next. Our shared life has never been a relationship, let alone a marriage. It has been a hierarchy where his desires and his pleasure are more important than my dignity and survival, where his pursuit of gratification has distorted our son’s view of what it means to be a man.

His return, on the evening of February 14th, was even more mortifying than his departure. He invited me to have pizza with him to celebrate Valentines’ Day together. Only it had been 10 years since we’d last celebrated Valentines’ Day, and he was now in love with another woman – not exactly something I wanted to celebrate with him.

I set up an appointment for us to talk with the lawyer together. Only he told me couldn’t come, because he already had an appointment with his colleague.

And before we could reschedule came the country-wide lockdown. We have been home together since then, and apparently his relationship with his colleague has fizzled out. There are no more late-night calls, and nobody will be planning any trips for a long time to come. The divorce and separations court hearings are all on hold, and the system is completely backed up.

Please check in on your friends. Even, especially, the strong and resilient ones. Even, especially, the ones who seem to have a perfect marriage and a happy home.

If you’re in a marriage with a manipulative spouse, leave as soon as you can. They won’t change. And they won’t leave you first, at least not fast enough.

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

1 comment