Humbly Courageous

Hello and welcome back to another week at Humbly Courageous! Growing up, I had to tell my medical journey story over and over and over. I dreaded going to all of the doctor’s appointments and telling a new person my story and hoping for answers. I would tell my mom, “I can’t do this today, I don’t want to do this anymore.” Some doctors would blankly stare at me, some would show compassion and thank me for sharing. So, if you would have asked me then if I’d like to be an advocate and share my story over and over in order to help others, I would have said, “no thank you.” It was traumatic at the time because it was always a dead end. Each time I was told, “I’m sorry I just don’t know what this is”, my heart was shattered, and I had to start all over again each time for 44 LONG years. .  Now, nearly 4 years after being diagnosed, I am finally off of that diagnostic roller coaster.  My thoughts have obviously changed. Now, I’m eager to share my story, over and over in order to help others.

Hello, welcome to another week at Humbly Courageous. We’ve officially entered my favorite season, fall. I love everything about it. I don’t even care that it basically rolls out the red carpet for winter to arrive because it’s just too beautiful to deny! If I could bottle up the warm feeling I get from fall and dab it on when I’m feeling down, that would be fantastic! As a disabled person, I often hear, wow you did that in spite of your disability! You went snow and water skiing, despite your disability! You went to college, despite your disability! You had two kids, despite your disability! You’ve completed two marathons and are training for a third, despite your disability! While all of those things are true I suppose, I also like to think of those things as because of my disability. Seems more purposeful to me when I think of it that way.  I feel like my disability drives me in a way that maybe I wouldn’t be if I weren’t disabled. It challenges me on a daily basis, pushes me to do

Hello and welcome back! If it’s your first time here, I hope you may learn something new about disabilities, or maybe even gain a new perspective of your own through hearing mine as a person who has lived life with a disability. Thanks for being here! Many of my earliest memories are that of being at a doctor’s office, or recovering from surgery at a hospital. If you are someone who has spent time seeing doctor after doctor, year after year, you know the familiar feeling of feeling like you are just a number. Just someone else for them to check off their list for the day was how it often felt. Too rushed with their own agenda to have time to really listen to mine. Those experiences didn't exactly leave me feeling dignified, or promote feelings of self-worth. Neither did being referred to as unidentified for 44 years of my life. I did have a few heaven sent doctors over the years. The doctors who actually encouraged me to realize, I did in fact, have a place for self-worth in my l

Hello and welcome back, if you are new I’m glad you joined us! The deterioration of my muscles  didn’t happen the way I imagined it at all. In my mind it was much quicker, more of an overnight thing. In my mind I’d go to sleep, and the next day I’d wake up unable to walk anymore. To me, it wasn’t a question of IF, but rather WHEN. Doctor’s were always saying all kinds of things that MAY  happen to me. No one knew exactly, because I wasn’t yet diagnosed. It was confusing and scary for me. Maybe that’s why I was never a good sleeper. Going to bed each night with something like that on your mind doesn’t exactly promote restful sleep. I never really told anyone about those thoughts. I can remember thinking that from a very young age. Kindergarten maybe?  I’m grateful that it hasn’t happened that way, at least not yet anyway. It’s more of a slow burn, watching something slowly go that you so desperately don’t want to part with. First, it was the cane that I needed. I remember the night. I c

Hello and welcome to another week at Humbly Courageous! Hope you’ve had something that made you smile this week. My smiles this week came from a picture my son Jack drew in art class and knowing my college boy is coming home this weekend for a visit 😊  I have a confession to make. I have an addiction, and it’s just keeps getting stronger. I’m addicted to….my routine. Sorry, maybe that was a disappointing build up, but it’s true! My addiction to routine really started growing when I had my boys. I guess you could say I’ve never been a super spontaneous person. I like to feel in control too much for that! Before having my first child I was, of course, reading all the books on what to do and how to do it, which if you have a child you know 99% of that goes out the window when they are born, and you end up just doing what works for you. Still, I wanted to feel prepared, and I read over and over that having a routine for your child makes them feel safe and is a good thing for them, while a