Life is ironic in the sense of its peaks and valleys. You have peaks full of joy and laughter. You want to run to the top of the mountain and scream with joy and laughter. The sun shines so brightly that it is mesmerizing. And then life hits you hard and you find yourself in a valley. In your main field of vision you see walls of rock surrounding you and the dark long river is all that is in front of your eyes. Each thing you reach out to for help does not fill your soul with peace, but more angst. You feel lonely, desperate, trapped. You shout for help and you are unable to stop feeling the agony. All you hear is the echo of your voice. It is a petrifying fear. Then you see your peripheral vision and you see those tall walls that create your valley. Your teary and worn eyes gaze up to the top of them, and you see it. The light. The break of the valley. The slice of safety that is calling your name. So, you realize the objects around you are not helping you. If anything they are bringing you down. So you climb. You thrust every bone and muscle into breaking out. You feel your body stretch from its curled position. And you work. You reach until you feel a flat surface. And then, you hoist your worn and broken body over the ledge. And you see sunlight. Sunlight and the glory of being there. You look behind you and see that dark valley. You run across the fields of lush green grass. You fall to your knees wanting to soak up these moments. You suddenly run into another dip in the ground… a valley. Your body quivers knowing that is what’s ahead. And you gaze upon the horizon. You see the peaks and valleys that were ahead. It’s never ending. You cry out for help, but realize it’s only you. So you drag your body ahead. And you rise. And you fall. And you rise. Because you are unbeatable. And you have the most valid reasons to falter and to blossom. You my darling, are unbreakable.
Peaks and valleys, valleys and peaks. I would be lying if I said there has only been peaks lately. Because that is not life, life is beautiful and painful and has highs and lows… but life is beautiful. These past three weeks have been very trying physically and emotionally. My motility has gotten worse and has made trying to get nutrition a major challenge… My autonomic dysfunction has continued to decline even more. While on all of my medications my blood pressure and heart rate fluctuate all. At my last Dysautonomia Clinic at Children’s Hospital of Wisconsin, my heart rate jumps over 60 beats upon standing and my blood pressure will rise quite a bit and will go very low too. My poor GJ tube has been infected for 32 long and painful days. My belly once again has looked like it is six months pregnant. It shocked my GI doctor. My ostomy has long periods of no function, the most recent one being 12 hours. I am not making the leaps and jumps in PT and OT like I had been hoping to make. I am really struggling with oral intake… Nothing sounds nice and when I try to eat, it does not delight me, and only leaves me in massive pain. So I don’t even eat for pleasure anymore. I am trying my absolute best with drinking one nutrition supplement a day. I am struggling with the medical trauma that has happened in this journey…
But these are just valleys. That is not my story, that does not define who I am. I have so many peaks to share. My trip to Boston for the NIH Undiagnosed Disease Network has been moved to May 1st as there will be a national neurology conference the week before, meaning I will then be able to see some extremely skilled individuals. How blessed am I to be able to have this opportunity? I met with Infectious Disease and this upcoming Monday I will be admitted shortly to start some IV antibiotics. I am so thankful we decided to address this issue with my CVL since the regime of oral antibiotics did not absorb nor help me. I was able to finally get my sutures removed from my Hickman which has provided such a relief from the itching sensation I had. And my diligent GI team has decided to readmit me in May after Boston. We will spend lots of time trying to get me some proper nutrition, hopefully all through my J tube, and help with the new symptoms I am dealing with. I am so grateful I have these opportunities to help my body return to baseline so I can conquer even more in life. I am blessed with being able to be home and see my family every day, to see the sun rise and set, to be able to laugh with friends, to be able to go to school, to simply be HERE.
These are my beautiful peaks and valleys… these are the mountains in my life that provide such a pretty view.