Humbly Courageous

Hello and welcome back to another week at Humbly Courageous. If you are new here, I’m glad you stopped by. Often when we are going through difficult times others will say “don’t worry, this won’t last forever” and it brings comfort knowing that they are correct a lot of the time. Our problems are often fleeting, or only last for a season. But what if you have something in your life that can’t be comforted by the thought of, “this won’t last forever” to get you through. Then what? I recently ran across a journal entry I wrote the day before I got my official diagnosis …finally. This is what it said. 11/7/18 Waiting: I’ve been waiting…for 44 1/2 years to be exact. Waiting for someone to tell me why I “walk funny” as people like to tell me. Waiting to tell me why I’m so weak, why it’s hard to sit up, why I can’t get myself off the floor, why I’m in so much pain, why I’ve had so many surgeries, why life isn’t fair, why others have strong bodies and I don’t, why I get stared at in public, w

Hello and welcome to another week at Humbly Courageous. If you are new here, I’m glad you stopped by! Today I received my 9th stem cell infusion. It’s crazy that it’s been 3 years now since starting these treatments. One of the most asked questions I get is, “do you think the stem cells are helping?” To which I say, “well, they definitely aren’t hurting, and I honestly don’t know where I’d be without these treatments at this point.” I know when I started the treatments, things were not good and they were trending downward, physically speaking.  Snowy stem cell day!  The thing with me is that I’m a fighter. I don’t say that in a bragging way, but when you live life with a disability you are backed into a corner, and like it or not, if you want to live well, you’ve got to fight. Every single day.  It’s exhausting. To me, to not fight, is to not live. I’m constantly seeking out things that will help me in any way possible. Fighting against a progressive disease is no joke. For the critics

Hello and welcome to another week at Humbly Courageous. I am so glad you are here! Countless times throughout the course of my life, I have heard comments like, "you are so lucky, you get to sit this one out. I wish I had an excuse like you!". "Must be nice to be able to just sit and observe, lucky!" Among many others. I have also been accused of "using my disability as an excuse to get out of things".  I never had a good comeback when people would say these things to me. I was always so shocked and caught off guard that I would just give a half smile and quiet laugh. I think that these comments had a really negative effect on how I viewed myself. I was hearing these comments starting at a very young age, like 5 or 6 years old. I didn't have the tools or knowledge to properly defend myself. I started to blame and question myself. I would think things like, "am I not pushing myself enough?", "am I lucky?, because I don't feel lucky&qu

Hello and welcome to another week at Humbly Courageous. I am so glad you are here.  I want to share a story from a Christmas long ago. A story about an unwanted gift. A gift that changed my life. An unflattering portrayal of myself.  Seems so small now! Christmas morning, maybe 1979, 1980 I don't remember for sure. I couldn't wait to wake up to the gift I had asked for. I just knew my roller skates would be waiting for me under the tree. The Rainbow Roller Rink was probably the most popular place for kids to hang out. The reality was, I stunk at roller skating. Roller skating and a muscle disease are not a great partnership. All of my friends were there though, so naturally that's where I wanted to be too. Maybe, my very own pair of Strawberry Shortcake skates would be the ticket to making me a skillful roller skater. Finally allowing me to let go of the railing and join the others I thought. The Rainbow Roller Rink However, that is not the way things played out at all. Whe