I shifted in my napkin-like gown that I was given to change into before the doctor came in to see me, eyeing the little piece of paper in my hand with notes and questions that I was going to ask. I could swear that minutes in a doctor's office are longer than normal minutes. Suddenly, there is a knock at the door and it opens. A kind-looking women with a warm smile walks in carrying what looks like an encyclopedia several inches thick. Guess what? That 3 inch stack of papers was my records from Johns Hopkins Hospital.
"I have looked through your records, but I want to hear from you personally what all has happened in the last year and a half," she said.
My mind raced. Where do I even begin? My life has changed so drastically in the last year and a half since my diagnosis that starting from the very beginning felt like reliving memories from decades ago. But slowly, with the help of my mom, we chronicled my journey from the very first trip to urgent care for bloody diarrhea in early March 2016 to my most recent surgery and change in diagnosis in September 2017. My new GI listened attentively, asking questions in between pauses in my story. Finally, once my journey with Inflammatory Bowel Disease had been chronicled, it was time to discuss my the next move.
My weight and nutrition level was a large concern for my new doctor, especially because at such a low weight I will go downhill much faster in the case of a stomach bug (like several weeks ago) or another complication. Vitamin levels were another concern, as most people with ileostomies are very low on vitamin D and vitamin B12 because the area where those key vitamins are absorbed has been removed. Throughout my recovery I have struggled with dizziness, lightheadedness, muscle pain, and pure exhaustion, so the likelihood that my levels are low is very high. We also discussed managing my Crohn's Colitis and the steps that we would take if the disease decides to awaken again.
After almost 45 minutes of discussion and a physical, I was sent over to the next building for labs to check my inflammation markers and vitamin levels. It makes me laugh to myself sometimes to think that, before my illness, I had never had blood drawn and was actually terrified to have it done. Now, it is like second nature.
5 tubes of blood later and I was sent on my way!
As I quickly approach 4 months post-op at the end of January, I am reminded daily that I am still recovering, especially when I overdo it. It can be so frustrating to stop a walk early due to incision pain or have to rest when I would rather be doing something else. One of the most challenging parts of recovering from any kind of surgery is accepting that, at the current moment, your body might not be able to do what your mind thinks it can. Sure, you can push yourself, but pushing too far will only amount a further setback than before. Despite my desire to do more, I have had to learn great patience with my healing body.
2018 is already off to a busy start, with my last semester of graduate classes to complete and appointments scattered throughout the next couple of months. They say time flies when you are having fun, but time also flies when you are busy! I strive to make sure I am enjoying life as well, rather than simply going from one event to the next. Too often we find ourselves anticipating upcoming events so much that we forget to enjoy the moments happening right in front of us. One of the most valuable lessons that has come from.my illness is to take in as much of the present moment as possible. With so much uncertainty still ahead with my health and future after graduation, it can be easy to get stuck living in the future. I want to live minute to minute, day to day, enjoying the little things along the way. Life is a rollercoaster of emotions and I am truly lucky to be here today, so I plan to make the most out of it.
Do not sweat the small things. Take it from me: life throws you unexpected challenges sometimes that can completely change everything you know about yourself and your health in an instant. So someone jumps ahead of you in line at the grocery store- let it go. The meal you ordered came out wrong- it is not that big of a deal. Laying in a hospital bed in August 2016, struggling to stay conscious while my body was shutting down from a disease that could not be stopped without surgery, I was not thinking about the person who cut me off in traffic or the assignment I did not get the grade I wanted on.
Laying in that hospital bed fighting for my life, I saw what truly matters, like my worried parents sitting in the room with me.
Next time you find yourself frustrated over something irrational, really ask yourself, "is this going to matter in 5 years? Is it even going to matter an hour from now?" Life is so precious and as humans, we are given the incredible ability to think, feel, and love endlessly. Use your power to think to educate yourself. Use your power to feel to understand another's pain. Use your power to love endlessly to hold your family and friends close.
I may not know where life is going to take me next, but what I do know that it is going to be one heck of a ride.