Rare Disease Day

Today is rare disease day, and for some reason it’s blowing up all over my social networks. It honestly is pretty cool to me that so many people want to spread awareness to this day and to the people that suffer with rare diseases.  This is just going to be short, but I’m so thankful for the hands that have helped me through all these years.
Thankful for my parents that have been by my side taking care of me through all of this. Getting me things whenever I need it. My dad being very straight with drs and nurses (mostly in the er) and he’s taught me to be very straight with them as well. Ha I don’t know what I would do if I was still as shy as I once was.
And my amazing nurses down in Medford that poured so much love into me. I think about them so often. What would I have done all those years without them? Sad I don’t have nurses like that here in Eugene. They gave me something to look forward to each week when I would walk in to get a treatment. I love all of them so much and miss them dearly. Mary, Marty, Martina, Peggy, Patty, Leslie, Leah and Jody.
I make this post just to bring awareness to the rare, hard diseases without any cures, and to be here to talk with the other people that are struggling with sicknesses. I’ve met so many people on here and am so blessed to have people to be able to relate to me and for me to talk to, and they actually get it!
I saw this video today, and honestly I loved it. It was inspiring.



One thought on “Rare Disease Day

  1. Andrea

    I just found your blog and I just want to say, hang in there. I almost started crying when I read your most recent post. I’ve always been (relatively) healthy my entire 27-years so when suddenly out of nowhere I became very sick, it was very very hard. I like you, like to think of lessons I can learn and the most common for me is humility. When people are treating me unkindly (usually because they don’t understand what’s happening to me) I say “Jesus, I accept this cross.” I just sit there and the hurt and the pain and ridicule the person is directing toward me sort of “passes through” me. I pray also, like you, to love as Jesus loves. I pray for the people who persecute me then minutes before I receive the most holy Eucharist I give my Eucharist up for them. I pray not that they may act kinder toward me but that I may love them expecting absolutely nothing in return.
    Another thought that gives me so much comfort these days is the thought of my guardian angel. Just today I said guardian angel, I’m having trouble just sitting here at my desk. I need you to literally, physically hold me up. I need you to do each and every action today for me because I’m really really struggling. It was recently the feast day of the guardian angels and there were so many beautiful artistic representations of angels protecting and helping us. Little words of encouragement or beautiful music, nature, or laughter just keep me going. You have beautiful children that must help with that. 🙂
    I’ll be praying for you.


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