Castleman Disease

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All Day I Waited for a Phone Call That Wasn’t Coming

I’m sure I’m not the first to do it and I’m sure I won’t be the last, but it was my first time mixing up appointments.

~discouraged, embarrassed, defeated~

Many emotions surfaced yesterday upon the realization I wasn’t getting a phone call from my doctor.

“How could I have mixed it up.” The mantra repeating through my mind as I wept defeated in my room. Embarrassed for asking my partner “to make sure he was home” so he could listen to the call as well. My memory, my mind since this diagnosis definitely hasn’t been in it’s tip-top shape.

Anyway, today is the day I hear from the oncologist. Hopefully there’s some sort of plan since the surgeon won’t go anywhere near the mass. Seems like every doctor just wants to pass me to the next like a baton. A baton no one wants..

#appointments #CastlemanDisease #whereismymind

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I’m new here!

Hi, my name is DaniMarie. I’m new to The Mighty and am excited to connect and learn. This past year I was diagnosed with Castleman Disease (unresectable UCD) #MightyTogether


Grief #CastlemanDisease

I was diagnosed with idiopathic multicentric castleman disease in January 2016 and even though it's been 3 years since my diagnosis I still feel like I havent fully process through my grief of being diagnosed with a rate and mostly unknown disease. It makes my feel abnormal. I'm not sure what it is I'm hoping for. I know treatment is going well I think I'm feeling as well as I'm eve going to. My fatigue and aches and nausea is my new normal. Financially I'm still trying to get back on my feet. So there is no cure and treatment is lifelong. I feel recently that I've taken a step back on my grieving process because it's been slightly proven that I lost likely will not be able to have kids. At least not naturally. It's not recommended to stay o treatment and get pregnant, and stopping treatment will eventually lead to relapse. I dont want to concern my family and friends. But sometimes I just feel so lost and adrift.