Quick updates


He was in Illinois – UC for business last week Tuesday to Thursday leaving me at home with Vince and Edda – which is not too bad, but threw me off my regular schedule because Edda had afternoon camp and I had no childcare, Vince had various things he wanted to see/do – but would sleep in late. Jeremy met up with Huimin who was my officemate in graduate school – though I was very sullen at the time and he, apparently, was a rising star and is now a big shot at Illinois. I was so sullen then, I wasn’t sure he would remember me, but he said he did when Jeremy brought my name up and says that he knows Vince’s summer advisor at Irvine very well. It’s all like a little academic circle j- whoops – circle of life. He went biking on Sat and Sunday this weekend. I’m glad he is home.


I’m fine. I started Effexor at the end of January at 37.5 mg once a day, but I felt there was an afternoon depressive lull, so my doc (who I love) upped it to 75 mg a day, which I loved and was in a great mood and felt mentally perfect, but I was unable to poop for a month which was very problematic for me. Because of Edda’s historical chronic constipation, we had all the things I needed to manage my own poop stoppage situation: the fiber, the Metamucil, the miralax. Only the miralax worked. I didn’t correlate the chronic constipation with the upping of the med, instead I thought I was dying of colon cancer and inspected every poop I made for blood/shape/consistency in the way all people worried by Dr. Google is (are?) wont to do. I eventually went back to the doc and told her I thought I was dying of colon cancer or if not colon cancer, it must be something like ovarian cancer and she’s like, uhhhh, maybe we should lower the dose of the Effexor because your constipation happened the exact same time we upped the dose. And I was like – oh, that sounds so much more reasonable when you say it – because I had thought it, but had immediately dismissed it. So we lowered the dose back to the starting dose, and I can poop again (fantastic!), but my mood is more variable (and grouchy). I’m angry that I have to pick between shitting well or thinking well. But not too angry. I’m continuing to take kayaking lessons and having a lovely time. My lessons are almost over which makes me sad. We spent last weekend mostly in the river rescuing each other with ropes and buddy systems. My legs are covered in bruises from the rocks in the river. My whole life there were signs telling me to never ever go into the Potomac River and here I am spending hours on a Saturday knee deep in the flowing river. It’s been fun. I also signed up for guitar lessons. I’m worried I’m going to buy the boat and/or guitar and never use them.


Flew to Irvine on Saturday and checked into his dorm room today (Sunday). He has an entire suite to himself. Two rooms, eight beds and a private bathroom. Honestly, he is a lucky boy – this is an amazing opportunity for him. He spent the weekend with his partner’s Dani’s parents without Dani who is still in NorCal (this is a big step). The parents live near Irvine and they took him to pho for dinner on Saturday night and helped him move into his dorm during the day today. They might have even taken him to Target. They were up at Davis at the end of the school year helping Dani move some stuff and get settled for their summer and were kind enough to bring Vince’s bike and some bedding down from Davis for him. His program starts tomorrow! We’ll get to meet them at the end of the summer when we see him at Irvine.


She went through last week without any more seizures so we upped the med from 20 mL to 30 mL on Friday night. I put her to bed and the next morning I woke her up early so all of us could take Vince to the airport, and discovered she was covered in shit. We cleaned her up quickly and tucked into the car and dropped Vince off at the airport. Camp JCC starts tomorrow – I have not yet packed her backpack, I’ll do it tomorrow morning. Jeremy took her to meet her camp counselor on Friday during the day who seems great. I hope we can get this poop thing under control esp for camp. On Friday, I was talking to a few coworkers about working at the office and I casually mentioned that I loved the office because I needed a flexible job for Edda and that she had special needs and she has something called Rett Syndrome and she’s 19, but kind of like a toddler (and this whole week, she was making some noises next to me while I was working, so they heard her a little bit, but didn’t see her on zoom) and then I promptly forgot that I told them anything about Edda. A few hours after that meeting, one of the people texted me a very sympathetic note saying they read up on Rett Syndrome and then I had the chance to tell someone about the new med she is on and the new gene therapy trials that are going on. Ack, it kind of freaks people out when they meet me and then “meet” Edda.


She’s loving life.

2 thoughts on “Quick updates”

  1. Girl I love your writing. It’s clear and concise. It’s heartbreaking. It’s super entertaining and funny. I really do think you could have a career in children’s books or teen writing.

    I don’t know that when you tell people about Edda and then they meet her that they are actually freaked out. Of course, I don’t know because I’m not there to see their reaction. But my experience has been that people just don’t know how to behave around someone who is challenged if they’ve never been around a person with special-needs before. After time they figure it out though. Also, I hope it’s OK but I’ve been bragging on Edda for years. I hope it’s OK that I talk about her all the time. I love that you’re so frank about poop issues – hers and yours. Because, as the wonderful children’s book says “Everybody Poops”. Love you and keep up the good work Doris.

  2. Oh, wow! Isn’t there a dose between 37.5 – 75? That seems like such a big jump to me!

    I’m sorry that Edda is having so many issues with this medicine. Ugh. Such hard work without a guarantee of any progress must seem hard!

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