New Joys: Girls Night Out!

Storm, Marjie, Nicole, Me

As I write this on Saturday night, I'm feeling a mix of emotions-- amazed, grateful, hopeful, thankful, relieved, and a little scared this goodness won't last. 

Today, as Mom and I baked chocolate chip espresso cookies (recipe coming), I said: "Can you believe I'm able to do this today after going out last night?" 

Mom's face lit up with joy as she reflected on how well I was doing today. 

I said: "I will be devastated if this new level of health doesn't continue." 

"I know," she said. "So will I." 

I try to rest in the present each day. But there is that little part of me that always knows the fragility of wellness within illness.

Clockwise from Left: Julia, Stephanie, Lauren, Storm, Marjie, Nicole, Me (HATE this photo of me!)

On Friday night, Marjie arranged for a girls night out at a local restaurant while her mom babysat her newly adopted daughter. 

Julia and Stephanie

First, Marjie is top-notch at accommodating my needs, so she and Nicole asserted to the folks at the restaurant that while the restaurant requires all members of a party to be present before seating (and there was an hour wait), that one member of their party could not stand/wait for that long and could only arrive after they had been seated. This made it possible for me to go. 

Stephanie and Lauren

My body continues to do things new, different and better with each passing day. 

The scene:

Eight women

A very loud restaurant

Sitting up for 3 hours

Needing to yell to be heard

A crowded restaurant

The experience:

Almost symptom free

Crossed my legs Indian style, as always, to sit up that long

Lots of laughter

Lots of great women, including several Jewish women

Ordered a meal as FODMAPS-friendly as possible

Asked for help--by asking Marjie and Nicole to be seated before I arrived and by asking Nicole for a ride--and received it willingly and lovingly

The outcome:

Tired

Achey and a sore neck

No extra meds needed to sleep

A day at home Saturday, but still able to function low-key

HAPPY! JOYFUL!

Still feeling rough-around the edges Sunday

How it used to be:

Sweating just to sit up

Overwhelmed and overstimulated ANS from the noise and large crowds

Shortness of breath from having to talk loudly

Difficulty focusing on conversation because of cognitive fatigue and other symptoms

Inability to even go to such an event or sit up that long

I would also arrive home with ringing in my ears, nausea, forceful heartbeats, fatigue, pallor, sweating, and an ANS otherwise so mad that I would be up most of the night because it couldn't calm down. Without a LOT of extra medications, I might be awake all night. At least one pajama day and maybe more. Several days to completely recover.

Clockwise from Left (Same as Above Photo)
Missing: Melissa Had Already Left

It was a wonderful night for so many reasons--because the women were wonderful, because I think I'm finding more new friends locally, because many of these women are Jewish, because the women watch out for my health, because we laughed a lot, because I felt so 'normal' going on this type of outing, because my body exceeded any expectations I could have had, because I didn't pay a horrible price, because I was able to fully enjoy the outing.

Many people have been asking if I know why I am feeling so much better. It's a combination of things, but for the most part it is due to one medication in particular called mestinon. I know I'm long overdue for the health updates, but I'm so immersed in the new, exciting things happening. 

Thank you for sharing in my new joys and experiences. I would never be this joyful, this happy, this blessed, this perseverant, or this resilient if it wasn't for the cheering squad I have with me every step of the way.

Blessings,

Emily