It’s a common theme for me these days. I feel like I’m always running out of time. I’m writing this on my phone while laying down in bed. Medical records lay in piles and boxes in the office, waiting to be attended to, but I’m stuck. As much as I try, my body and mind just won’t obey me this morning. I’ve reached my limit.
Evan had an appointment with the ENT (Ear, Nose, and Throat doctor) last night. Less than two weeks ago, the latest ear infection was gone. But sure enough, the new respiratory crud giving him trouble since Monday caused a fourth ear infection. We’re done. The surgery scheduler is supposed to call today for tubes. I know if I don’t lay down NOW, I’ll never make it to the 11:30 appointment today with the pediatrician to check for pneumonia or bronchitis. Last night he fussed, screamed and cried for two hours straight. He’s smart enough to know a doctor’s office when he sees one. Let’s hope this morning isn’t a repeat. What do they say? Fake it until you make it? I’m going to do my best to not look like a mom on the edge of a breakdown.
Enter round two of my mother in law coming to save the day. The children adore her. I’m thankful. Ella has nightmares almost every night since she witnessed a full paralytic attack (Monday) with no other adult in the house. I blame myself in every way. And at the time she needs me most, my patience is thin. I see it, but I can’t stop it. As much as I am completely embarrassed to admit this, personality changes are one of the warning signs I’m on the edge of an attack. The best way to explain it? When my brain is irritated, I’m irritated. We cry. We apologize. We hug. Repeat.
It’s incredible how quickly I’ve deteriorated in such a short amount of time. The last two mornings, the aching was so bad, I had to resort to pain medicine. Everything hurts. I’m so weak. Cleaning the kitchen almost put me over the edge. I can’t push it, yet I have to get ready for the trip. It’s really frustrating.
Things I’ve learned this week about my disease:
- No more night driving. The flashing lights are too much of a trigger.
- Respiratory illnesses put me at a particular risk of increased attacks according to the medical literature.
- Mid-thirties is when attacks really ramp up (right on time!). This is when the majority of muscle damage is done.
- Physical therapy is critical right now. But it’s going to look much different than you’re average strength building routine.
I feel like I’m running out of time. I think I’m seeing this specialist just in time. And I want to make the most of my time.
So here’s what I’m truly thankful for:
- Friends and family who show me the best of themselves when I am at my worst. I now have an emergency list of people willing to take a turn watching my kid(s) for appointments and any other time I’m in need.
- A dear friend took pictures of my family last weekend. The phrase “you could drop dead” got my attention, and I felt like this was important to do now. I hate how I look. The tumor hasn’t been kind to my vanity. But I know my kids (and my husband) love me no matter what and will want pictures of the one they love.
- A very kind and thoughtful neighbor told me she was braving the freezing cold rain and going to the grocery store. “What do you need?” she asked. Um, only everything. She took my list of staples and dropped them off at my door. Perfect timing. A true gift.
- Pete and Peggy took Ella to her ninja class, a double class because the poor child has missed so many and needs to make them up. She loved it. Her dance class instructor has also been kind enough to allow double classes for makeups. No matter how hectic our lives get, I want Ella to know her needs are seen and she is just as loved and important to Todd and me as ever.
- A good visit with one of Ella’s doctors, and a good chat with her teacher. She’s a long-term substitute while her regular teacher is out on maternity leave.
If you’re a praying person, I’m not too proud to ask. T-minus 4.5 days until departure. One minute at a time…
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