Category: HSCT
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My Complicated, Needy, Irrational, and Humbling Relationship
The doctor/patient relationship will never be equal. I need him, but I don’t want to need him. I am so lucky to have found him, but I wish I never met him. What a phenomenally unfair burden to place on another person.
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Armor
I’m working really hard right now to think of my body as functional, beautiful, and perfect in its imperfections. I gave my body to science and I’m trying very hard to get it back.
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The Not-So-Terrible Twos
Two years have passed since my stem cells were put back in my body to rebuild bone marrow and my immune system, it seems like a lifetime ago and yesterday all at once.
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That sounds like a female problem
I’ve learned through my four decades on this earth that the general consensus from medical professionals is that they just don’t know when it comes to women’s bodies, women’s health, women’s cycles, and women’s hormones. We’re too individual, complex, unique, tricky, hard, difficult, challenging, erratic, and unpredictable.
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How many therapists is too many?
After years of trial and error, I now have three individuals dedicated to different aspects of my mental health. In comparison to my other medical teams, three seems like a small number. Let me reiterate and say it loudly for those in the back row, MENTAL HEALTH DESERVES YOUR ATTENTION TOO!
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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.
My Chronic Library 