When I was diagnosed with Moyamoya disease almost four years ago, I was thrilled- not because I had an incurable rare brain disease, but because I finally had a community. Unlike CNS Vasculitis, I was able to find other patients (Thanks Nerissa) and an online support group (Thanks Tara.) I suddenly didn’t feel alone despite the major challenges ahead. #30DaysofGratitude #MoyamoyaChallenge #moyamoyawarrior #moyamoyastrong
That same group has been working on a #moyamoyachallenge during the month of November. I haven’t been able to participate daily because my nonprofit organization (www.SistersatHeart.org) had its big fundraiser this past weekend. Three of us plan the whole event so it’s been quite busy to say the least.
Fortunately, our event was a great success and now we’re focusing on the holiday with rest and relaxation. So finally, in the spirit of Thanksgiving, I’m going to share my list of what I am grateful for. I am sure to forget something, but I love that I do take time to appreciate life.
I’m grateful for…
- My children that still want to (occasionally) snuggle and be with me.
- A husband who puts up with (and truly loves me) the ups and downs of my personality and life.
- Nights out with friends who like to dance and sing at the top of their lungs to eighties rap music.
- Parents who are a part of my life and the lives of my family.
- Continuous opportunities to make a difference.
- The ability to walk down the street since there were times that I couldn’t.
- Technology that makes so many things so easy.
- Fellow advocates who raise awareness & funds and find ways to help the greater community.
- Friends from all parts of my life and sharing in laughter.
- My innate curiosity and true love of people.
- Medications and journaling that allows me to practice self-care
- My desire to learn and many experiences that allows me to do that.
- Having an amazing skill in napping and putting it to use.
- Medical professionals who can treat & manage my rare disease.
- Beaches where I can collect sea glass, relax and reflect.
- Daily coffee and a good book.
- Workouts that have become a part of my life that reminds me of playing sports.
- A supportive community in my hometown.
- Conferences that empower educate and connect patients.
- An appreciation of nature and the ability to experience it.
- Our pet bunny that brings such joy and companionship to my children.
- Miracles after miracle that allows me to be here today despite four strokes.
- Extended families that create awesome family memories for all of us.
- My fellow non-profit organization founders and leaders who are in the trenches with me.
- Dreaming and scheming.
- Successfully losing weight and getting back to feeling healthy this year.
- My continuous love of ice cream- specifically the salted caramel truffle blizzard from DQ.
- Health…and WELLness!