“… a year of deterioration…” As we finished up meeting with my gastrointestinal doctors today, my main doctor brought up how this has been a year full of deterioration. I have firsthand experienced the truth of this statement, but hearing it causes a sting of emotions that is far too painful to process. This day…
365 Days of Intestinal Failure This journey has been full of so many phases. NJ tubes… TPN… coming on and off of Hospice… learning how to walk again… surgery after surgery. I sometimes find comfort when I am in the midst of a phase. It gives me a sense of normalcy among the chaos. About…
SMOF… The New Life Line I have been kept alive now for 16 months through TPN. TPN stands for Total Parental Nutrition. It is a solution of nutrients and vitamins that are infused into my vascular system every night over 12 hours. It completely bypasses my digestive system. This is how I am given the…
“Jachin’s Angel Kises Everywhere” The JAKE Foundation raises incredible awareness for Sturge-Weber Syndrome, while creating joy for so many other individuals battling debilitating illnesses. I know they create joy for others as my family and I are actually a recipient of their passion. This winter my Make-A-Wish to see the mountains and be with my…
IMG_3319 “Hold the door, say please, say thank you, don’t steal, don’t cheat, and don’t lie. I know you’ve got mountains to climb but always stay humble and kind” T “And a moment came that stopped me on a dime, I spent most of the next days, looking at the x-rays, talking about the options,…
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…
“That’s the thing that is predictable about PseudoObstruction, that it is unpredictable” Dr. Majorie Arca Unpredictable is the predictable sometimes. It keeps life interesting and never “mild” or “boring”. It means new adventures and journeys everyday. However it can also mean another day of being told news you never wanted to hear. News that creates…
“Sometimes carrying on, just carrying on, is the superhuman achievement” Chronic Intestinal Pseudo Obstruction is an ugly disease. That’s all that can be said about it. It’s an ugly, awful disease. It’s a hateful disease. I don’t like using such strong words but sometimes they are what is needed. There are only 200 cases of…
“Yellow is seen as a color of hope, happiness, and sunshine. It exudes positivity, energy, freshness, clarity…” Sunshine is such a gift in life. It is something that lifts everyone’s mood and creates a happy ambiance in the air. To have sunshine, clouds have to part. Sometimes these clouds can be heavy with moisture and…
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…