Welcome to Rare Candace


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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?

I’ve struggled with the correct answers to those questions for months. ITP put me in a dark place. It challenged my relationship, my friendships, my family. People started worrying about me when they had enough stuff in their own lives to deal with. Suddenly I went from being someone who provides support to someone who needed it. Not an easy task. I have a lot of pride, and I really had to swallow that. I was laid off from my job, I had “friends” disappear and I had gawkers- people who wanted “in” just to make themselves feel better. My advice is to always avoid the gawkers, I made a point of eliminating them from every aspect of my life, including social media. A total BYE FELICIA! That was my first act of rebuilding from the ashes.

I tried to run from ITP, I figured if I did certain things it would disappear. Some people are that lucky, I am not. I went through the motions of acceptance for my diagnoses. Denial, anger, guilt, depression, all terrible things. There were days I wondered if life was worth living, I’m not afraid to admit that. I would be concerned if I didn’t! This entire ordeal has been physically, mentally and emotionally draining. The worst part for me was dragging everyone along for a ride to hell.

So now what? Well I reached the pits of hell. It’s what happens when you take prednisone for months, your platelets still fall and the side effects are debilitating. I’ve gained weight, my face shape has changed, my stomach hurts, I have acid reflux, my skin looks like a pimple mountain range, etc. You name the side effects, I’ve experienced them all. Since prednisone couldn’t get me stable and I started bleeding, I switched my treatment plan to the chemotherapy drug Rituxan. I’m headed in for my second dose/punishment in a few days. It is worse than prednisone in terms of side effects, but I am praying that it will give me a few months of not stressing over my numbers or uncontrollable bleeding.

This blog will cover a variety of topics including my personal struggles, issues involving rare and autoimmune diseases and discussion about healthcare as a whole. Please feel free to provide input, ask questions or simply just acknowledge that yes, prednisone is evil.