Saturday, September 30, 2017

Round 4 of JA Meds and P/T Working Mom Life

Emma Update:

The MRI of her jaw showed bone marrow edema. That means swelling. In her BONE MARROW. I didn't know that could even happen. The doctor was looking for swelling in her synovial fluid, at the joints, to confirm the presence of arthritis. There was NO swelling there, though, and there was zero visible joint damage, so... good news! However, the presence of swelling in the marrow and the symptoms of pain each morning gave her doctor and me enough reasons to say: Time to restart Enbrel.

This was the longest unmedicated remission she has experienced yet, so that's a small victory! Still, exactly seven months after her last injection of the stuff, I gave Emma her first weekly dose of Enbrel this time around. That was eleven days ago. She started feeling relief just four days after her injection. She says that chewing in the morning is completely pain-free now. I am a happy mommy. Hopefully it stays that way.

What now? Every week for the next year or more, I will poke her in the back of her arm and inject 1mL of her wonder-drug into her body. Every week she will get a piece of candy after her injection, because she deserves it. We will monitor blood work regularly. We will keep our fingers crossed that Enbrel continues to work its magic and life goes back to normal.

I'm okay with all of it. This is my normal, after all.

You know what's not normal? Going to work EVERY SINGLE DAY. Okay, not every day, because I don't work Sundays and I only work about half of all Saturdays, but still. Also, I know that it actually is pretty normal for most folk to go to work daily, but it wasn't my normal for about seven years, so I'm still adjusting.

I drop the kids off at school and go to work. I leave work and pick up kid #2. We have about an hour before we go back to school to pick up kid #1. Sometimes I squeeze in a quick trip to the grocery store. Sometimes I spend the entire hour trying to get kid #2 to eat his after school snack. Sometimes I sweep the kitchen, catch up on dishes, or start a load of laundry. Once both kids are home, it's more snacking and homework, and "PLEASE practice your piano!" Some days it's a trip to the library and swimming lessons. Some days it's karate and piano. I squeeze in making dinner, packing lunches, feeding all of the pets twice a day and cleaning up their poop, starting a fresh batch of kombucha every 10-14 days, vacuuming twice a week, and cleaning various pieces of the house here and there.

It's busy, but I'm managing. The only thing I can't seem to fit into it all is a non-weekend shopping trip at Costco. I need to figure that one out soon.

How are you?

Wednesday, September 13, 2017


I get accustomed to the patterns and rhythms of life. I get lulled into a state of peace, and I forget how easily the "normal" can change.

Emma's arthritis has always followed a pattern. When it all began, the arthritis flared in her ankle, then knee, before other joints revealed their involvement. Subsequent flares have followed similar patterns, always beginning in the knee or ankle. Both are big, obvious joints with familiar symptoms that make identifying the presence of arthritis fairly easy.

This time is different. (IF this is a "this time.")

During this summer, Emma complained off and on of pain in her jaw when chewing. It always happened first thing in the morning, then felt better as the day progressed. I wondered if this was arthritis, or if it was caused by clenching over night, since the kid has a history of grinding her teeth when asleep. Then the pain stopped and my brain stopped pondering the cause.

Then her knee showed a little more squish than normal, and she had some stiffness there a few nights in a row, and I thought: AHA! The ******* arthritis is back! So I started some homeopathic remedies and emailed her doctor, but the squishiness went down and the stiffness went away, and my brain stopped stressing.

Then the morning jaw pain returned. We tried a mouth guard at night to prevent clenching and the jaw pain went away, and I sighed in relief.

Then the morning jaw pain returned. This time, the pain was accompanied by a clicking sound. We tried the mouth guard some more, the jaw pain stayed. We used essential oils, the jaw pain stayed. One day, about a week in to this particular adventure, it hurt not only in the morning, but also at lunch time. When my girl came home from school and told me that she couldn't chew quesadillas, I knew the jig was up.

I emailed her doctor.
The next day. her doctor, Emma, and I had a video appointment. (Technology is so cool!)
The NEXT day I spoke with the scheduler in radiology and Emma's first ever MRI was on the books.

I cried that day. Multiple times. I cried like a hysterical, broken down woman who carries the grief of knowing that her daughter is in pain. I cried like a working mom of multiple children who has to juggle schedules and childcare and plan to face early morning traffic to take her daughter to an appointment in a big, loud machine to confirm whether or not the joints in her jaw are indeed being attacked by her own immune system. I cried like a woman who worries and fears possible bone damage in her beautiful daughter's growth plates on her face.
After my lunch-break (aka "cry-break")  I moved like a zombie through the rest of my work day.

Thank goodness for an incredible, relaxing weekend after that. I needed to forget my worries, and I was able to do so with dearly beloved friends and my husband in a beautiful place.

Then the new week started, and we prepared by watching youtube videos full of MRI noises and adorable nurses demonstrating how an MRI appointment usually plays out. (Again, I must say: Thanks technology!)

Now we are here, at the end of the day of Emma's first MRI.

We got up early and got to the appointment with plenty of time to spare. Emma looked adorable in her special hospital gown, but since she asked me not to post the picture, I won't. The appointment took an hour. The MRI machine was loud, and my kid was SO GOOD at holding still, even though she didn't want to and was getting a headache by the end. She also got an I.V. injection of contrast dye LIKE A CHAMP. She didn't even flinch, because she is incredible.

After her appointment, I took her out to a pancake breakfast, naturally. Then I took her through a drive-through dairy for her very favorite pineapple and strawberry ice cream cone, because ice cream heals all wounds. THEN I took her to the grocery store and bought her a pizza Lunchable, because crappy food makes kids happy. Finally, I dropped her off at school.

What I should have done next was come home, lie on my couch, and sleep off the emotional exhaustion that has been steadily increasing for a week.
I didn't do that, though, because that's not who I am. I am neurotic and high-strung and I really like using my time to do jobs that I don't want to have to do later. So, I did chores, things that don't really matter, but help me to feel better.
Which means I'm still exhausted, on so many levels.

So what's next?

I wait for results. I wait and feel exhausted and sleep fitfully and I wait. Now that you know, you get to wait, too.

Thanks for sitting and waiting with me during this one, friends.