Today I had the repeat CSF draw and it stung like a bee the
entire time, about 60 seconds. For those that do not know, Emory lost my draw
from last week and changed all my scheduling, to wrong times and weeks, and
it’s just been a nightmare. Not only was my car possessed but now my doctor
office?! Slowly getting it figured out with nice deep breaths.
I’ve still been feeling good, so afterward Tara and I went
to lunch and had a little shopping spree at IKEA! My dream store. I had a great
time spending the day with my buddy, thank you!
So, I wanted to back track a little tonight. A few days ago
I was referred to a guy named Jim. He has LM, making him my LM brother. I’ve
never had a brother before so I was all over it!! We made some time to actually
talk on the phone and I was instantly realizing we had a lot in common. He goes
to doctors in California, he is a two year survivor of LM and a I think 12 year
survivor or more of brain cancer. We realized we were both endurance racers,
him being an ironman triathlete, me, mountain biking.
It was actually really good to talk to someone about not
being able to do the sport you love anymore, but both adapting to things we
can. How sometimes it hurts when you see people post or talk about their
amazing enduro adventures, but then remembering how much of a gift it is to
just be alive! He’s committing to a trail run, and I’m riding and walking when
I can on the road, and that is enough. We talked about how every day is special
and how you cant let the future what ifs take over your mind, and how the
people around us know when we are down, right there pulling us out. How much
imagery works and stay positive is the key to half the battle. He doesn’t do FB
but I became friends with his wife on Facebook, total sweetheart, and we are
going to meet on one of these visits to Santa Monica!! So how cool is that?! I
have a LM brother, long term survivor, and I’m going to meet him.
Now I would’ve said lets meet this trip in a couple of weeks
BUT I have that reserved for my sweet little chemo sister Brittany. I am SOOO
excited. I found out about her about a month or two after my 9-9 diagnosis,
Brittany Black. At first I would just pray for her and comment here and there,
but in March she contacted me and we just started chatting. Shes so young with
young babies, and I just fell in love with her.
We decided we needed to meet and Skip is helping me make
this happen!! We are flying into SF so we can be tourists, driving to her house
the next day, and then driving the coastline to Santa Monica! We’ve been
talking about a date weekend, and I think this is going to be AWESOME and
cannot WAIT.
We spent last Sunday with Maggie and it was great! She
looked so good, I felt good, and all just seemed right with the world. We left
there and visited his dad to drop him off his birthday present and then went
out to eat with Gloria and Mema afterward at Applebee’s. For some reason that
is Alana’s choice restaurant in Griffin. Totally cracks me up as Skip and I ate
there ALL the time in college.
Last night we had a little girls night at our house honoring
a sweet woman fighting a big fight. The girls around that table had so much to
talk about, relate to, and I was so blessed by their being with us. Recently my
friend Lesley started Mary Kay, and I felt God telling me I had to help her
kick things off. So we did and we helped a woman in need at the same time, and
that is going to be her forever goal. To help a women feel pampered, loved, and
supported.
Finally, the last thing I want to write about is my friend’s
sweet daughter doing her senior project on my journey this last year. She is
planning to do a video of home videos and we need your help if you can! Please
make a short video telling Avery how my story has affected you. Whatever it is
or may be, record it on your phone (landscape would be best) and please send it
to:
or PM Avery Long on Facebook under my friends.
Thank you SO much for making this happen. So much for the
continued love we receive. I’m so touched still by the random notes I get on a
daily basis. You guys are awesome and I know I wouldn’t be here if it wasn’t
for the best team ever. Go #teamnadine! We fight and continue to find hope
every day, one day at a time. #findinghope
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