The good always outshines even the darkest of times. Never forget that.
The worst phrase I have heard in a long time. Worse than incurable, or progressive. It’s hearing the confirmation of my worst fears. Disease progression. The reason I have been in so much agony these past few weeks is due to the fact my Chronic Intestinal Pseudo Obstruction has progressed. We noticed these issues a few months ago but they continued and continued. I now have an ileostomy that has minimal function. Baseline my ileostomy did more than save my life, it gave me back a bit of my quality of life. I had so much relief from it functioning. Now I am distended and swollen in my belly constantly. I was recently hospitalized due to the fact we thought it was a surgical issue that lead to my ileostomy functioning so poorly… we learned with fear that this is my motility. Nothing we can immediately fix. I can’t tolerate J feeds. I can barely tolerate anything orally… Any precious bites I have to pleasure my taste buds leave me with severe consequences of things not moving in my intestines and stomach. I drain my stomach to find relief. I leave my doctors shocked at the fact my disease is so refractory to treatment.
After learning about the disease progression I sort of crawled into a shell. I barely told anyone… Only close friends and my family. I have tried so hard to protect us from this truth, hoping if I ignored it it would not become my reality. I have done so much to try and stop this disease from progressing. Countless surgeries, procedures, tubes, lines, central lines, ostomies, medications, hospitalizations. Leaving the hospital the most recent time I really was hit by the fact of what was going on. I have spent my time ignoring reality, trying to be my happy self, and shielding my own mind from this harsh and twisted reality. Its my coping mechanism. Creating my own cocoon. My cocoon consists of close friends, family, and music. I consume myself in my home and dog. I dare let my mind leave this area, as sometimes the stress of the real world is just too much to bear. I have devoted myself to just staying in my protection of loved ones and continuing with school. Striving to just be Isabelle. Not Isabelle that is fighting relentless conditions.
Reality still hunts me down. It chases me through the trees and valleys I have created to block it out. I am suffering from lower back pain from distention, the fact I can not fit into anything but my leggings due to distention, being on full TPN, and trying to manage my pain and nausea. It is all an invisible war. My body looks healthy and radiant but one glance at my naked abdomen and inside of me reveals the fight that is going on. It is publicly a silent disease, just standing in the shadows. However in my body it is loud and screams that it is present.
Even though times have been petrifying lately, the light has once again outshines the darkness. I am surrounded by family and friends that help me through what
I am dealing with. They provide me an ear to cry to, a shoulder to lean on, a smile and laugh to mimic what I want to feel myself. I don’t know where I would be without them. They are my roots to this tree. No matter the number of times the tree is attacked and pulled on, it never uproots. Even when times become so hard they continue to be the lights in my life. I am adjusting to how I was before my ileostomy. Remembering the things that aggravated my belly more. Trying to be gentle with my body while wanting to leap and fly. I am trying to appreciate everything because this reminds me how fluid life is. A ever flowing rapid river with lots of white caps.
I look with tears of joy the fact I am working on periods of walking without my walker. Focusing on taking strong steps with proper form and flow. I strive to handle my foot drop and the weakness on my right side. Walking without a walker for periods feels miraculous… even more miraculous the face I am even walking. Standing. I have begun to drive again, easing myself back into the ways of the roads. Gaining back tiny ounces of independence is empowering. It makes my world spin even more.
So when I feel broken over my disease progression I remind myself. I am driving for the first time in over 6 months. I am walking independently for bits of time for the first time in over 6 months. I learned how to walk again, how to stand again, how to hold up my own head again, how to hold things again, how to do self cares again, how to simply survive. I was so sick this winter, yet I am still literally standing today striving to beat this. Even when things are declining, I remind myself I am thriving.
I was fortunate enough to attend a portion of graduation at my high school for the class above me. I sat with my choir and we performed as a group. Seeing the fieldhouse full of people sparked something in me… Everyone in there was radiating emotions of anticipation. Leaving one stage in life to open the next chapter and stride into it. The students, closing one door to open another one. I related to it because it invigorated me to the signs of this ever changing world. How fast life moves is frightening and beautiful at the same time.
It may be dark and cloudy right now, but it is also so sunny and light. The rays of sunshine that poke through these clouds bring me hope and strength. I am going to take these feelings with courage as I attack my upcoming admission to try and help my intestines out and ease the symptoms.
Thank you does not suffice. Thank you everyone for the vibes, support, prayers, messages, hugs, smiles… It is our energy, and our hope. It fuels us.
Here is to the Light in Life,