We did not travel and no one went to the hospital this past week. It was nice to have a week at home after so much travel, and really nice to have no hospital visits. (Knock on wood).
We did have a visit from Theresa and Sandy, sisters from the family I stayed with when I first came to Reno.
Theresa was in town from Klamath Falls, Oregon and Sandy was in town from Denver. In the photo I am wearing the kaftan Anita, my stepmom, made for me with a kangaroo pocket for feeding tube access. I love it. Theresa is taking my mountain bike home to try it out and decide if she wants to buy it. I won’t be mountain biking anymore.
I did get to aqua fitness twice this week, which is better than the once a week I averaged in June. I had been going in the afternoon because of napping in the morning, after not sleeping well at night. One workout this week was 5:30 P.M. I had a nice surprise when my friend Shelli, who usually teaches in the morning, was subbing. The other workout was my regular 10:10 morning class. It was nice to see my friends. I feel the aqua fitness is what I need for range of motion. I always go in the hot tub after class (my friend Alice calls it our dessert). I usually meditate in the hot water, but I also hear other conversations. One I overheard was too incredible to ignore. A woman was talking about a woman she saw on TV who had 24 inch fingernails. When asked how she does things, she said, “I can’t do anything. Everybody else does everything for me.” I thought why would anyone choose that? There are so many ALS patients who would give anything to be able to do anything for themselves.
After the hot tub, I go in the steam room for my curly hair. It only takes a few minutes to get my hair to react to the humid air by curling perfectly. Oh, if my middleschool self (who HATED my curls) could see me now!
I set a goal of filling my five food delivery boxes each month with giveaways. Since we traveled so much in June we had twice as many boxes to fill. Between all three of us we filled them all. It feels good to simplify and only keep what we really need. I am more motivated than ever. Every day I can use my arms and legs is a gift. I read And the Mountains Echoed by Khaled Hosseini. The protagonist’s mother had ALS and when he visited her she was busy with house repairs, trying to get as much done while she could. It has taken me a year to get really motivated. Fatigue is my limiting factor.
Stan got some good news this week! After numerous denials from our insurance company, he was finally approved for a drug that could potentially help him get off prednisone. He started the new drug a few days ago. It is wonderful to have hope for him!
I am waiting for my new drug, hoping it will be available in August as MT Pharma, the drug company, has been saying.
I submitted photos to the Great Nevada Picture Hunt. Lots of travel around the state this summer and my new Canon Rebel camera helped. I may share what I submitted in a future blog. Photography has added so much to my life, including new friends from the Nevada Magazine event a few weeks ago, and one who will be a close friend (Melissa😎📷).
It is also a luxury to be able to watch the Tour de France live in the morning too. Even when I get up early to do my meds, it’s already on. Stan and Andy enjoy it too.
I am knitting again, trying to make socks for the first time. I had been avoiding knitting, afraid that my fingers wouldn’t do it. I now realize I need to do what I love until I can’t. Knitting is very relaxing for me – a Zen experience. And I am finding socks to be a fun new challenge.
In closing, a t-shirt shirt that my dad made for me states the obvious but I love it.
And even with a disease that sucks I can still enjoy life.