Gastroparesis Awareness Month
Each Monday, we’re sharing a patient story. Some of you may know about our first patient already. Her story on TPN was featured on the Pact Blog a few years ago. Over the years, her ever evolving story has been shared to help advocate for, and inspire others living with the disease. Our first patient story is our very own G-PACT president, Samantha….
When I got my first diagnosis, my whole world was flipped upside down. I was thrust into a world of doctors, needles, appointments, medication and fear. I didn’t know it then, but who I was and the life I knew it was gone. There are a lot of things I could talk about when it comes to living with chronic illness but for me, this became the most important.
In the midst of the chaos, it was important to find something to calm the storm. For me, that became running.
I want to preface this by saying I was never an athlete. Actually, I hated running and teenage me would laugh at the prospect of me running for fun.
It has never come easy for me. I get asked often how I’m able to make it work. Truth is, sometimes it doesn’t. For two years, I ran with a feeding tube. I had to find a proper balance of nutrition and exertion so I was able to safely run without trouble. I’m a diabetic so I was constantly adjusting insulin and food intake around my runs. I have a port for daily calcium infusions and had to have a good idea where my calcium levels were before a run to make sure I didn’t drop and cause a whole mess of trouble from low calcium. My robot parts, as I lovingly refer to them, have helped keep me alive, but also can make running even more of a struggle.
Don’t worry. This isn’t me telling you to start running. If you can and do, awesome! Welcome to the club! If it’s not your jam, that’s cool too. What I want to urge you to do is find your thing; find that thing that helps remind you that your life is worth fighting for.
Running allows me to just BE. It gives me time with my body. My body and I have to learn to work together to run. It physically keeps me strong, but more importantly, it keeps me mentally strong. It’s the one thing I REFUSE to give up. It lights the fire inside me to fight for the life that illness has tried to take from me over and over again. Doing hard things makes us stronger. It might not feel like it in the moment, but I know I’m better for it. I like knowing I conquered something I didn’t think I could. Really, who wouldn’t? Knowing I beat the thing that was trying to beat me…there’s nothing like that.
Every year since I’ve gotten sick, I think damn that was a hard year. Surely enough, the following year was always harder and more complicated. There were many times where I wasn’t able to run or do much of anything but survive. Running taught me how to survive. It taught me that you can fail your way to success. It taught me that no matter what happens, you can’t lose if you give it your all.
Last year while training for my half marathon, I became septic. It’s an unfortunate risk that comes with having a central line. It was my third time and by far the worst. While in the ER, I wasn’t sure I was going to make it. I felt the fire in me being put out and slowly could feel my body giving up. Somehow, I made it through and got through some really tough days that were ahead. While I don’t remember the first few days in the hospital, I do remember asking the doctor when I could run again…and he looked at me like I was nuts! To this day, I believe, and my doctors do too, that running saved my life that day.
When you find what sets your soul on fire, something changes. You aren’t afraid to fail, you just keep pushing forward. I had an injury to my hip in 2018 that put running on the back burner for me. I was at risk of causing more injury if I pushed it. I had it surgically fixed in the beginning of 2019. I was immobile for a few weeks; and unable to run for months. I had moments where I wanted to give up. I had moments where I felt like I would never get my ability to run back. You see, I wanted to run so damn bad that I absolutely refused to give up. I told myself I was going to run a half marathon that fall, come hell or highwater.
Ten months post surgery I crossed that finish line. If I hadn’t wanted it as badly as it did, I don’t think I would have gotten there. You see, I firmly believe that when you find something that does for you what running does for me, you become unstoppable. You stop saying why me? And start saying why not me? Chronic illness will always be with you. It will take from you. It will knock you down. It will try to break you. It will make you want to give up. Chronic illness can also teach you how to fight. It can give you the fortitude to take on the world. It can show you exactly what you are made of.
The night before my first half, I wrote “I talk a lot about running, probably too much. When you’re as passionate about something the way I am about this, you’ll know what I mean. I walked down to the arches today and immediately felt a tightness in my chest. I’ve set many goals for myself over the years, and due to unforeseen circumstances, usually health related, I’ve had to either change the goal or give it up. Going into 2019 facing down hip surgery was no joke. I had NO idea if I’d be able to run the way I wanted to after I healed. I didn’t even know how well I would heal. I wouldn’t let go of my goal and that helped me through. These last ten months haven’t been easy, but being here…it’s so satisfying. I’m nervous, I’m intimidated, and still wondering how I’m going to pull this off. No matter what happens tomorrow, I did what I set out to do. I ran 265 training miles. I never gave up, even when it was unbelievably hard. The moral of the story is perseverance, so tomorrow, we run.”
And run I did.
The PACT blog always wants to hear from you! If you have a story you want to share, email us at firstname.lastname@example.org!