October 27, 2016
I took my boy swimming this morning. I’m 1 date late for my period, and I know I will just get weaker and more fatigued as my period gets later and later, so I thought we’d do something fun while I still could. We had a great time, I chased him around being a “kissy-fish”. We swam together, he jumped off the diving board and went down the slides for almost an hour. My legs feel so great in the water: so light and easy to move. I’m so happy that he still wants to play with me, and still likes being with me in public. Every time he places his hand in mine when we cross the street I smile and love him just a little bit more. These days won’t last forever, and I’m cherishing every one of them.
The fat guy is coming for his visit on my chest. I’ve been thinking about trying some of the mestinon I still have left instead of an Aleve if the pain gets really bad. It seems like it’s up to me to figure this out and learn to live with it, so why not?
I made the call to the neurologist and found out that I was referred for the genetic testing. I know the doctors name, but couldn’t figure out his offices phone number to call and see what kind of a timeline I should expect. I also called my endocrinologists office and got an appointment for December 20. It’s not much progress, but I did something at least and can feel like I’m trying.
It still amazes me how quick I am to devalue my limitations and symptoms. I’ll have a good day, whether it’s because I did no activity or I just legitimately had a good day, and I leap right into thinking I can go back to the way my life was before. I picture myself on field trips, riding quads through the open prairie, or drilling holes in rivers on sunny winter days. I picture family hiking trips and day long mountain bike rides. I picture being an equal labourer for landscape and gardening projects. I’m still not sure if it’s because I’m naive or because I don’t want to let go of my dreams.
In the car my son asked, once again, for a sister or brother. He worded it “Can you have another baby in your belly?” I answered truthfully and openly this time. “I’m too sick to have another baby.” He remarked that I could have another baby when I wasn’t sick anymore. To which I replied that I may always be a little sick. I’m able to say it to him but not to myself. I don’t want to give him false hopes, but I don’t want to give up on them for myself.
I don’t want to be in this situation, but I’m learning so much about myself and life in general. The human spirit and the drive to survive astounds me at times.