At the end of the day we are all human. We strive for the best, but often times make mistakes. I admit that I make mistakes all the time, often times everyday. Pouring the wrong milk in my iced coffee, being impatient with something, feeling frustrated over things I should not… This summer I made the mistake of thinking I finally got a grip on my chronic illnesses where if I was fully dedicated to my medical regime, nothing would happen. What I couldn’t see was what was to come.
I spent May and the entire month of June recovering from my ileostomy surgery. Since my lower right quadrant of my abdominal muscles had to be entirely repaired, I struggled with walking and movement restrictions for 8 weeks. Once those were lifted, an entirely new issue arose with a fierce presence. My inflammation markers went through the roof, my ankles and feet became red and severely swollen, I could barely walk, I was in pain all over my body, I was so tired, and I declined rapidly from the end of June to early July. After having my double lumen Hickman pulled and a port placed in surgery, it took about a week before we found myself being taken to the ER to be admitted. A systemic infection, the doctors said was sepsis (a horrible word for those who know its meaning), attacked my body. I spent that hospital stay fighting as hard as I could. High dose IV antibiotics, steroids, and pain medicine. A necrotic sore. Biopsies. Enlarged spleen. Discovery of multiple T1-T4 spinal fractures that were causing severe back pain. MRIs showed the infection seeded in my feet through my knees causing inflammation and infection of my muscles and soft tissues. Enlarged liver. Small pleural effusions. I lost all of the muscle tone I worked on building from last year. After a painfully long waiting period the worst was over, and I began improving, I was discharged on antibiotics.
I felt defeated at first. I opened up about these feelings to my mom and my doctors. I said how I thought I was past the worse- that I was past the unexpected fights through hell. That recurring trauma was past us. I told them this made me worried… how do we go on our upcoming family trip to Europe we had planned for a year? How do I take the step to living in a dorm in college when these medical crises could arise without notice? How do I prevent these?
One of the attending physicians said words that soothed the worry we felt, he said, “I can’t imagine what you are feeling, because I have never been in your shoes. And this does suck. It just does. It is scary and these worries do not go away. But you can’t live your life like that, you can’t live your life with fear. You have to go out, go out and live“, and it was those words that made me feel like myself again. It reminded me of what my parents have taught me during this: do not let boulders in your path block your journey. Move around them. Crawl over them. Push them aside.
That was exactly what we did. And we have done that countless times before in this journey. It is the best choice to make. We went on our trip, and I essentially worked on regaining some stamina back by hobbling around the streets of France, a country I have now fallen madly in love with. I found moments of rest riding the Big Bus Tours around in London. We lived. We pushed through the terrifying moments, sepsis, the crippling worry.
I sit typing this in my dorm room at college. What a profound thing to be able to say. I met the most kind group of girls here, I feel so lucky to know them, and am continuing to meet more amazing humans. I am so grateful. We have fought so hard to be where we are today. Do I have nerves about balancing wanting to be an average freshman in college with having illnesses that can become life threatening? Yes. Are my ankles and back now a source of constant pain, and I can see the scarring from the infection forming on my feet? Yes. Is my memory scrambled ever since being so sick? Yes. But what do I plan on doing? Going out and living. And that is just what I am doing… it is what we are all doing.
So please, go out, and do the things you’ve waited to do. There is a whole world out there.
Until next time (with a college update, wow)- All My Love,