So I walk up on high
And I step to the edge
To see my world below
And I laugh at myself
While the tears roll down
‘Cause it’s the world that I know
Oh it’s the world that I know
From The World that I Know by Collective Soul
I heard this song on the radio and it struck a chord with me because I am good at laughing at myself but the tears roll down too when I look at my life. Tears of nostalgia which are mixed with smiles and laughter, tears about what ALS could rob me of in this beautiful world I know. My tears are mainly in my mind.
Let me continue to show you some of the beauty of the world I know.
On Tuesday we hosted the Reno High Cross Country Team for a breakfast after their early morning practice. My friend Melissa, who is a professional photographer came and took photos while watching her 5 year old nephew. Thank you my friend. Melissa’s website: FaithPhotographynv.smugmug.com
It was one of the only smoke free days this week. It is a really nice group of kids, coaches, and parents. It was nice to be able chat with some of them. Andy is really enjoying the preseason training.
I went to aqua fitness 3 times this week. I have lots of new friends in the classes. On Wednesday I went in the steam room for my curls like I always do, but then I went for my haircut from the gal who has helped me to love my curls: Nicole Page at Curl Envy. She loved that she got to trim my steam enhanced curls.
On Thursday I had a dermatologist appointment to check on a mole that had been previously biopsied. There were only minor changes, and she told me she would be comfortable waiting and see how it looks in 6 months. Then she said, ‘or if you are worried about it we could remove it today.” The pre-ALS Meg would have opted for removal, but the ALS Meg has bigger things to worry about.
This week involved a lot of paperwork:
- For my disability retirement application from PERS, the state employees retirement program. There were missing documents they said. I had confirmation that they had been sent from the people whose reports were supposedly missing. So I had to contact them again, and ask them to submit again. What a pain.
- For Andy’s Boy Scout Camp next week. Documents included Medical Forms, permission to use firearms, and permission for travel and medical treatment. He will leave Sunday for a camp near Kirkwood Ski Area. They will hike in a mile to camp on a lake. I hope he has a really fun week – he signed up for kayaking, archery, and advanced sailing. He really loves sailing. It looks like a great camp on the website.
- For the Benefit Investigation and Enrollment for Radicava which should be available mid August. ALS patients should contact their neurologists and have them get the forms from radicava.com. There are 4 parts that the patient fills out (1,2,3 and 5). The doctor fills out the rest and submits it. This drug is very promising for significantly slowing the progression of ALS.
On Thursday Andy participated in his second annual Driver’s Edge, a program that teaches defensive driving. He was glad to have the reinforcement of the skills, and I am glad he did too.
My college roommate Sue will be at Tahoe this weekend with her grown kids. We will meet for lunch on Saturday. She said she is bringing old photos, so I thought I should look for some too. I found some from when her kids were little and from my wedding. I also found a photo of my 8th grade basketball team. It was the first girls basketball team at the school – 1974, Title IX. We were the opposite of undefeated. My dad made me play, and I have a lazy eye and no hand-eye coordination. The photo was pretty pathetic, like the team. I posted about it on Facebook, and uploaded it to our class website. One of my teammates, Casey, said, “Shut up! I got 2 points and it was considered a miracle #catholic.” I laughed so hard about that. Even the next morning when I thought about it. And I can laugh at the photo but there is no way it will be on Facebook or this blog. There are limits to what I share.
And the Saturday visit: It was so great to reconnect with my college roommate Sue. She still lives in the Chicago area but is visiting her kids who live in the Bay Area. They rented a house at Lake Tahoe for the weekend. We met at Lone Eagle Grille at the Hyatt in Incline Village. It was so great to catch up. We shared photos from college and after. So many great memories! Thanks Sue! It was great to get to know het kids a little. They are great young adults.
And finally, Stan and Andy and I watched a movie on Netflix, Lion, that is now one of my favorite movies because it is about love, connection and hope.