I. Am. Tired. I am tired of people assuming that we are ignorant or ill-informed because we have Cee taking medication. Super medication. I am tired of people assuming that the 30 minute “educational” video produced by their MLM company automatically makes them more knowledgeable than our doctor who has seen 30 years of patients. […]
(Note: The links in this post are affiliate links, and we will be compensated when you make a purchase by clicking through our links.) Hello! We’re still alive, in case you were wondering. I deactivated my facebook account over the summer. It’s been super freeing! Here’s a picture from our summer adventures: After staring at […]
The other night, David gave Cee her Methotrexate shot right before bed. Methotrexate is a chemotherapy drug that is used for SJIA because it shuts down the immune system. Cee’s immune system is superhuman; it’s so powerful that it even attacks things that aren’t germs. Like her joints. Cee’s Methotrexate often makes […]
Participants in “Write 31 Days” pledge to write for 30 minutes on a single topic every day in October. My topic? Happiness. After a talk between Cee, David, and myself, today we decided to get Cee’s wheelchair out of its cobwebby corner in the garage. Cee’s pain has been slowly crescendo-ing. First the limp was a […]
or Be Careful What You Wish For Sorry, America. I remember wishing people would understand how difficult it is to parent a child who needs terrifying treatments to survive… Imagine yourself in this situation: Your young daughter has a chronic illness and is in a lot of pain. It’s time for a medication shift. […]
We just got back from Mayo. The hospital. Not the condiment. In case you’re confused. Cee’s labwork looks normal. We monitor her inflammation markers and liver numbers every few months. Good. Cee’s x-rays look clear. We have x-rays done yearly to assess permanent joint damage and the overall state of her joints. Good. Cee’s exam by […]
Head over to MoneySavingMom where I’m guest posting on saving big money on big ticket prescriptions.
I called David at about 9:30 this morning. I told him that I was resigning. I asked if he wanted me to be done at end of the business day today, or if he’d prefer the traditional two weeks. – I told him about the hate note I got from Elle (so proud of her […]
We just returned from our most recent up and back trip to Mayo. They’re more cost and time effective than staying over night, but man – – those up and backs are exhausting. Nothing like sitting for 7 hours to take it out of you. Cee’s arthritis is quieting down. She’s gotten rid of almost […]
We’re holding steady. Cee’s mild pain has stayed about the same. Sometimes her left hip hurts. Sometimes it’s her right hip. Sometimes it’s neither, and sometimes it’s both. Overall it’s not impacting things too much. We watch and wait. “Holding steady” might just be a euphemism for “trying not to fall apart.” Cee has been on oral steroids for […]