When I was working registration at the school auction, the mom of one of Ellie's best friends told me that Ellie and Sydney beg for a playdate every time she picks up her daughter. (Scott has told me the same thing!)
Nichole said that when she saw Ellie at school a few days earlier, she told Ellie that she needed to talk to her mom before the girls could have a playdate.
Then, she tells me, Ellie responded, "Oh, don't call my mom. My mom is sick. Call my dad instead!"
I worry about how my health issues are affecting her. A 4-year-old shouldn't have to tell people that her mom is too sick to set up a playdate. (And it's not true anyway -- no matter how sick I am, I'm still the family social coordinator! I keep the calendar that keeps us all straight.)
The New York Times ran a story a few weeks ago about children who are caregivers for their chronically ill parents. And I don't mean adult children -- I mean kids who should be out playing with their friends or doing homework rather than administering shots and taking care of their parents in other ways. I'm not sure I can imagine a worse horror story ...
It's become a family joke that I say I'm "pooped" and Ellie asks me why I didn't go to the potty first. (She honestly thought I meant I'd done it in my pants the first time she heard me say it. Now she knows it has another meaning, but she likes to go through the conversation about it each time.)
But she also asks me if I "have energy" before asking me to do things for or with her. And she asks me how I'm feeling some days, cupping my face in her hand like I do when she's sick.
I guess I need to be more stoic, since I don't want my preschooler worrying about mommy. But I also learned the hard way a few weeks ago that I can't just ignore my body's limits either without paying some severe consequences.
So I saw my internist today. I think my optic neuritis is getting worse, which I guess is pretty common before it improves. We're considering putting me on steroids again, but I'm going to wait a couple more days before making that call. I hate steroids -- they make me crazy, especially at high doses.
She also is ordering an MRI of my brain. I had one done in October 2007 that was "unremarkable," but it was done without contrast and did not include an "MS protocol," whatever that is. The insurance company needs to pre-approve it before I can be scheduled, but I hope to get it done in the next couple weeks.
Meanwhile, she's doing the paperwork to try to get me in to see an MS specialist at OHSU. Apparently there's a lot of hoops to jump through before I get an appointment. :P
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
4 months ago