There are a lot of topics that aren’t covered when it comes to rare diseases. One of which is relationships. Exactly what happens when one person becomes sick? Is the relationship complicated based on time spent together? Martial status? Which person gets sick? There are so many dynamics, it is impossible to discuss every possibility. I can only speak from experience on this. Bottom line, it is the most extreme challenge that any couple can face.
Cinco De Mayo in the hospital, my mom won a gift basket!
I see this question all over the internet. I was just told I have a rare disease, what do I do? Who do I turn to? What medications should I take? Am I going to die? There is no step by step guide to how to handle these issues. We don’t even have a set course of treatment for most conditions, everyone is different! And yes, you can die. At some point every single one of us will. You just cannot live in the shadow of that fear because it will not help you excel in your day to day activities. Continue reading
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Today marks 202 days since being diagnosed with ITP. It almost feels like I’m describing the death of someone, which in a way is true. I lost the old Candace. She was healthy and had no limitations. Now I’m working on my self identity with ITP. How do I describe myself to people? Am I a rare disease patient? Am I sick? Should I consider myself disabled or handicapped?