Tag: Cleveland Clinic
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From OR to AND: A New Place in Healing
I think the medical advice of “year-long recovery” for HSCT is a misnomer. But there is progress and there are things happening that matter to me. I am recovering more quickly, I am lasting longer, my endurance has improved.
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Speak Up: It’s pay day
A $10,000 refund doesn’t come along every day so today, I’m going to rejoice in this moment, take a calming breath, and appreciate that the outcome was worth the effort.
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Speak Up: The ‘not it’ mentality
This is part three of my episodic retelling of battles fought, questions asked, and lessons learned this calendar year with healthcare and insurance. In this segment I highlight that names are deceiving, few people are helpful, and it takes religious and maniacal follow up, documentation, veiled threats, and a flexible work schedule to get answers.
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Speak Up: The pen is mightier than the sword
This is part two of my episodic retelling of battles fought, questions asked, and lessons learned this calendar year. Know your insurance, understand the appeal process, write the letter and follow up. Assume nothing. Take nothing for granted. Put things in writing.
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Speak Up: I will not go quietly into the night
This is part one of my episodic retelling of battles fought, questions asked, and lessons learned this calendar year. I fought insurance, my employer, my care team, and time. I fight for those without a voice, a safety net, or a platform. I have a loud voice, and I will be heard.
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Chronic Illness-Doing OK-Surviving Barbie
I wanted to be a success story, but I’m realizing I’m just me — unapologetically me. There is so much nuance in chronic illness; we live in the gray area and that unfortunately, is the hardest story to tell. But to me, that’s where the true story lies.
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The Mental Gymnastics of Chronic Illness
I am a mess. But I’ve never been more excited to be messy. My physical and mental health are in constant flux, no two days are the same and it’s exhausting. I guess this is healing? Today, that’s what I’m telling myself.
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Memory, Time & Moments
One year ago today, I checked-in to the hospital for an experimental bone marrow transplant.
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So did the transplant work?
Through tears of defeat and tears of joy, body degradation and elation, and one million new experiences, I’m happy, I’m content, I’ve found a small amount of peace. The future is full of possibility.
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Am I stable?
What was good news for my doctors was confusing and demoralizing news for me. While my MRIs were stable, I was declining and fast.
My Chronic Library 