–My injections are definitely helping. I’m not up to my pre-Elias self, but I have been able to leave the house and have many small adventures. I am struggling a bit with using the injection pens. I used the syringes for so long, and it was just a very different experience. I plan to write a post on the differences and my experience so I won’t go into to much detail, but I did ask to have my nurse ambassador come and help me with it. I absolutely did not want another pen misfire to delay my treatment even further, so I wasn’t taking any chances.
–Another wonderful effect of the medicine is that I’m finally able to do detailed cleaning and organizing again. If you’ve known me awhile you know I live to organize (former librarian forever), and I haven’t been able to give my house any attention in this area since I got pregnant with Elias and it has been driving me insane. My house is a disaster, and I never really got Elias’ nursery put together, so I am slowly working on unraveling the messes. Consequently, I am tossing out and donating things like mad, as a mass exodus of stuff is part of my plan. And it feels so good.
–My family as a whole has been dealing with some significant health issues, besides my own. I haven’t talked about this often, and for a long time I just couldn’t talk about it at all–it was too painful–but my Dad’s health has been declining. He has a neurological condition that is similar to early-onset dementia, and has caused terrible problems. He can no longer read. His severe aphasia means he can’t really talk even though he has ideas he desperately wants to convey. His mood and temperament is different. He wanders. He obsesses over things. I’ve been helping my mom by watching him when she can’t. It’s really tough. But, as my mom has said, “He is still your Daddy, and still the sweetest man in the world.” And everyone who knows him knows this is 100% true.
–Some of our amazing adventures this week include: trying durian, the stinkiest fruit of all time, attending the Rifftrax Live 10 Year Reunion show, having an actual D-A-T-E with my husband(!), going swimming with cousins in Denair, hosting a political organizing movement in my living room, taking a tour of a cheese-making plant with friends and making and eating ice cream, making a dollar store wreath with Isi, and tons of crafts with the kids. I am way behind on laundry but it is so worth it!
–My friend Ellen had this lovely conversation with her two boys, Noah, age 5, and Luke, age 3. Kids love the cane, what can I say!
- Luke: Carrie Anne got a CANE!
Me: I know.
Luke: Dat’s COOL.
Noah: SO COOL.
Me: It’s a mobility aid for when her Crohn’s acts up and she has trouble staying on her feet for a long time.
Noah: Well, it looks GOOD.
Scrapbook 06.22.16. Good news–we make it into Starfleet!
FF: Summertime Swimming. My love letter to the internet. Read and get happy!
Stefanie blogged again on Kind of Broken! A rare update while she struggles through some terrible symptoms. My favorite blog. A great post, as usual.
Matthew McConaughey can’t stop being a badass white savior in the Free State of Jones. Really important piece by an incredible woman.
The Story and Stigma of a Baffling Illness. ME is a terrible, terrible disease. My friend Sarah is effected and I see how it has taken over her life. Recent studies have begun to unlock ME’s mysteries.
Everyone should watch this video on a goat beauty pageant in Lithuania. The marching band! The costumed humans! Goat Beauty Pageant is both my dream come true and my new band name.
A Toast To The Toast, The Site That Was Just For You. Yes, Even You. We will miss you, The Toast.
My gardening aesthetic. Also mine. And my kids’.
Tbt to Halloween when I dressed as the babadook but my friend’s house had more of a grown ups drinking wine vibe. I have thought about this on and off for several days and I giggle every time.
I’m crying. Millennial realtalk.
Jose Gonzalez & Latino Outdoors: Tapping Into A Passion for Nature. Jose is a dear, dear friend, and I am so proud of him and the organization he created.
Eli’s Yin and Yang outfit. My favorite fashion blogger. Love this look.
Scrapbook: The Fourth of July 2012. Isobel, Sam and Victoria look so tiny here!
Scrapbook: A Celebration of Water and Fire. Photos from last year’s summer celebration.
Scrapbook: Elias’ First Swim. Note Isobel giving an underwater high five.
Scrapbook: Rockets Red Glare. That year we celebrated with our friend-family at Pam & Steve’s.
Snapshot: 07.09.14. Summer adventures, my favorite painting, rehabbing Nintendos.