​March is Multiple Sclerosis Awareness month. So, it seems somehow appropriate that this month I had my first part of my new Rituxan infusion treatment. It is a more aggressive treatment that will hopefully decrease the disease progression and help keep my joint condition controlled, as well. It was something I had spent months going to specialists and advocating for. Once the initial sleepiness from the pre-treatment Benadryl passed, I felt great! Great enough to not be able to sleep until 3:00 AM. I’m pretty sure that was a side effect of the pre-treatment steroids. But after less than 4 hours sleep, I got up, went to the dentist, dropped off a book sample at the local children’s toy and book shop and then picked up my first check from Polly’s Pancakes for their order of my “Purple Moose Makes Maple Syrup” book. It was warm and sunny, and all in all, a pretty great day. I felt the best I had in what seemed like weeks. 

I had been feeling off for almost two weeks prior to my treatment. I saw my primary care and my rheumy, and neither knew what was going on. I did my best to ignore it. It’s an occupational habit of chronic illness. Occupational, because managing a chronic disease becomes your job. Today was the first day in over a week that I actually felt human. My brain worked, I didn't feel exhausted, or sick or like I was going to faint when I bent over. Though I wanted to thank the infusion, I realized tonight there was much more to the story. 

 Social media is a wonderful way to share adventures and special moments in life. It also can bring encouragement when sharing a difficult moment. But too many difficult moments make people uncomfortable. So what about the times in-between? I have done a lot of travelling the last several months. Virginia, Maryland, Ohio, Massachusetts, Rhode Island, Vermont, New Hampshire. I have had wonderful moments with my family and friends. But what happens when those moments end?

​It's always amazing when you hear a song come across the radio for the first time, that says everything that's in your heart, but you are afraid to say out loud. Thank you, Kenny Chesney, Liz Rose and Travis Meadows.

Kenny Chesney (Feat. Mindy Smith)'s "Better Boat"
Written by Liz Rose and Travis Meadows,

Lyrics:​
I ain't lonely, but I spend a lot of time alone / More than I'd like to, but I'm okay with staying home / My how the last few months have changed / I'm smilin' more despite the pain. 

Chorus:

I breathe in, I breathe out / Got friends to call who let me talk about / What ain't working, what's still hurtin' / All the things I feel like cussing out / Now and then I let it go / I ride the waves I can't control / I'm learning how to build a better boat.

I hate waiting, ain't no patience in these hands / I'm not complaining, sometimes it's hard to change a man / I think I'm stronger than I was / I'll let God do what he does.

If it's working I don't know / When I get done, the thing may not float / But I'm learning how to build a better boat.

​My name is Kristen Steele. I am the fourth solo on the "Dear Evan Hansen Virtual Choir". On Sunday, September 2 at 3:00, I finally got to see Dear Evan Hansen performed. I was there with my son. It's hard to put into words how much this moment will mean to me, but I will try. This my story. The story of why and how I auditioned, and the incredible impact not only the show has had on me, but the honor and timing of being chosen to be included in the Virtual Choir.  

​I got a new roommate yesterday at the rehab center. Even though it would only be for a short 24 hours, I knew we’d get along well. I was missing my previous roommate (a sweetie who still calls to check in on me). She left the day before, and I was happy to have company again. We hit it off immediately. Before night had fallen, I was already writing down a quote she gave me, so I wouldn’t forget it. I was struck by the realization of how much of an impact we can each have on one other; regardless of the length of time we have known them. 

​I remember the last time I sat down to write. It was right before a big push at the local fair that I hoped would help raise my visibility enough to push my new life forward writing the Purple Moose books, doing birthday parties and crafting classes. Instead, my body had a different idea. A routine follow up doctor appointment ended up with me back in the hospital. It was exactly one year from my original TM diagnosis and hospital stay. The coincidence felt like some universal joke. My bladder wasn’t working, and my old leg symptoms were returning with my mobility decreasing. I wouldn’t find out until months later that the enlarged bladder could create a re-emergence of my onset symptoms. Instead, the myriad of doctors that came in and out of my hospital room those few days had no answers. That’s the problem with a teaching hospital. My regular doctor was only there when he was scheduled to be. The rest of the time it was students with a higher up doctor that didn’t know me or understand Transverse Myelitis.