Redefining Thankful With A Rare Disease


Major highlight of this year was seeing Sugar Ray at Epcot with one of my best friends.

With Thanksgiving around the corner, everyone is asked to reflect on what they are thankful for. I was always annoyed by this, because you could push this in all kinds of directions. You could be thankful for being alive down to your football team winning. What makes what one person is thankful for better than others? How about focusing on unique things that mean something to you specifically? After all, each one of us places different values on daily events.

My boyfriend gave me the greatest gift ever: a trip to Disney to see one of my favorite bands.

My boyfriend gave me the greatest gift ever: a trip to Disney to see one of my favorite bands.

Simply put, this year has sucked for me. I would be lying if I tried to make it out to be okay. Truth is, 2014 is not okay and I went to war with my body. You don’t receive extra platelets by sugarcoating the truth. So yes, I am thankful to be alive, but I’m going to focus on a few events that have made me fight harder. I think for rare disease patients, these moments are the ones that push us through the rough times. So for those of you asking what you can do to help someone you know in a similar situation, just being there for them is a big help.


Amazing friends who make me forget that I’m sick.

I’ve met some amazing people this year, and reconnected with old friends. The theme has been the same, they treat me no differently despite the fact that I’m sick. I could never adequately express how this makes me feel, but I can say it makes my heart smile. Even my friends who live far away that I cannot travel to see have really had my back. I discovered I wasn’t fighting this war alone, I had a team of warriors. At any time of night I knew there was someone I could reach out to just to vent and let it out. Sometimes you have to dump all the stuff in your mind out on the table and sift through. They help me grab what I need to work on and trash the rest. This is what helped my mental health rebound after being diagnosed.


Can’t forget my Kona. Always bringing a smile to my face.

So this Thanksgiving I am reflecting on the things that have helped me get through this tough year. 2014 started out amazing, then quickly crashed. Now I’m shifting my focus away from the year as a whole and taking it on a day by day basis. After all, I am only as productive as my body allows. I hope everyone enjoys their turkey and someone has a drink for me. I have my third Rituxan treatment on Wednesday so Thanksgiving is going to be a rough one.

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