You know when you work all day and then lose most of your work? That was my Sunday. I will post as soon I can rewrite it.
I started Radicava Round Two on Friday. Our wonderful home nurse Pam supervised Stan doing the needle poke. Now he is signed off and can do it unsupervised. This time I will do 5 days on, 2 days off, and 5 days on, then 16 days off. I will try to get my swimming in on the off days because the needle stays in for the 5 days and it can’t get wet. I did go to aqua fitness three times last week and it felt great to be back. I had to keep my napkin in my mouth to breathe through my nose but it worked. Still trying Zyrtac for my allergies. My doctor at UCSF just recommended papaya enzymes to thin mucous so it won’t get stuck in the back of my mouth, available through Amazon, so I ordered them and they will arrive Tuesday. I was using Pineapple/papaya Enzymes from Trader Joe’s and that worked but then I noticed a pineapple allergy. It’s nice to know I can get papaya alone.
Saturday was Stan’s sister Terry’s birthday. She came by and hung out with us in the afternoon. She helped my allergy situation by helping to change the furnace filter. She also dusted the ceiling fan in our room. And she offered to come do deep cleaning when we are traveling in the next 2 months.
Today, Sunday is my sister Beth’s birthday. We will be with her on Thanksgiving. My Radicava schedule worked out nicely. My 5th day will be Tuesday and I may be able to go to late afternoon aqua. Then for Wednesday and Thanksgiving I don’t have to infuse.
It also works out for my trip to Boston for the ALS/MND International Symposium. We leave Dec. 6 and return the following week a few days before Round 3.
Speaking of that conference, all ALS patients and caregivers reading this, let me know if you have specific questions for the researchers. I will do my best to get them answered. You can comment on this blog or if you came to it through Facebook or Twitter you can comment there.
I plan to make sure they know it’s not just mice and test tubes, and ask about future treatments being accesible to tube fed patients as well as patients with lower breathing scores and lower ALSFRS and ALSFRS-R scores. And also the non plecebo trials going on at Duke should become the norm. No ALS patient should have to take a placebo. There are good records of historical controls that can be used.
Please stay tuned.
I am breaking my Monday only rule this weekend because I will be camping off the grid Monday morning for the Memorial Day Holiday. So I am posting on Friday, and it won’t be a mistake. For U.S. readers, have a great holiday weekend.
My husband Stan said all he wanted for his birthday was a party. I agreed, but knew it would be a big undertaking with my ALS and fatigue. We planned it for Saturday April 29, the day before his 61st birthday.
Invitations were easy, through Facebook events and emails, plus some others that Stan contacted.
We spent the week before the party working on decluttering the house. I had just had a food delivery, so we filled my 5 boxes with giveaways that Big Brothers Big Sisters picked up on Friday. We also tracked down some extra folding chairs and two card tables. I worked on a playlist, starting with Amazon Prime Classic Rock playlists, then adding some more modern music. It was 5 hours long and we played it on shuffle and repeat so it continued throughout the party. I love Amazon Prime Music! Oh, and Stan bought a new stereo that can connect to my phone so we were able to use good speakers.
Our friends Erika and Paul offered to come up early from Sacramento to help us get ready. I am so grateful – there is no way I could have done it alone.
I went to Wal-Mart Saturday morning and picked up a helium balloon kit, a Happy Birthday sign, a couple of inexpensive beach towels to cut and use as bench covers for our picnic tables, a couple of orange plastic tablecloths, and six inexpensive brightly colored chairs.
When I returned from Wal-Mart, Stan was leaving for Costco for food and drinks for the party. My dad came over and helped with party prep for a little while. When Paul and Erika arrived with their daughter and niece, I was able to make a decorating list and a honey do list for some things Stan ran out of time to do. We had some things from previous parties: an inflatable pepper to hang on the front porch,
an inflatable float plane,
a colorful cardboard parrot for the wall, table cloths for picnic tables, and paper lanterns for the trees.
Our younger friends, Erika and Paul worked so fast. Andy and Maddie and Jacqueline helped with the decorating too, as well as had some fun.
We got everything ready in time for the party.
I was the official photographer, with my new camera. That is a job that can be done without speaking, and it was fun.
I will let the pictures tell the story. What was significant about the party is that everyone was smiling.
Around 9 pm I was quite tired and sad and I thank Thien for listening to me then. We decided I better go to bed. As soon as I was alone, I began to cry, grieving because I could no longer stay up until the party was over. I was also over tired, which was true of my teary New Year’s Eve in the Galapagos. Andy came in to comfort me and listened to my writing on my Boogie Board. He asked if I wanted Dad to come in, but I didn’t want to take him away from the party. I explained to Andy that I have to grieve, and I promised I would be better in the morning.
The next morning I got up early to take my meds and saw this in the backyard.
We woke Stan up on his birthday by bouncing a balloon like a beach ball over his bed.
Stan, Andy, and Chuck went dirt bike riding. Then we met Catherine and Brian for our semi-annual Stan’s Birthday at Murrietas.
All in all, it was a great birthday for my wonderful caretaker who puts me first despite his pain.
To my email subscribers, I accidently published a post I had just started writing. Please note that you will get one new blog post each Monday. If a second one comes that is missing or incomplete you can be sure I inadvertently published without meaning to. I apologize for confusion this may cause you.
10 years ago my son started kindergarten at Caughlin Ranch Elementary School. I was a regular volunteer until he was in 5th grade and the Office Clerk job opened up. I applied and was hired and I loved the part time work. I got off work two hours before he got home. I could go running or or grocery shop. Then the secretary job opened up. I wasn’t sure I wanted to work full time. But Andy was in middle school and ready for more independence. I moved up to Administrative Secretary and I loved interacting with students, parents, and coworkers.I hoped to work there until retirement at age 65.But we can’t plan everything. Instead I am taking medical leave at age 56.
My school has a new garden this year. One mom, Tammy, spearheaded the effort to get the garden going, obtaining grants and donations, finding businesses that would volunteer to help, and arranging for lessons in the garden from Urban Roots, a local garden education company. Tammy told me that she and her 6th grade daughter Maddie were working in the garden one weekend, and Maddie had the idea that the garden should be dedicated to me. Tammy told me that Maddie said, “Mom, this garden is like Meg. It’s beautiful, it brings joy to our students, and is strong and courageous.” Such a touching thing from a 6th grade girl!
So on my last day at work they held a dedication ceremony at 8:30 AM.
It was a beautiful morning in a beautiful place where students learn about how things grow and all the other garden processes. I am honored to have it dedicated to me.
Students read tributes to me and each class painted a rock.
I will miss everyone but can go back to help out once in a while in the garden or the office.
Video credit Tammy Freeman plus most of the photos too!