Life is a constantly evolving journey. It is a rapid and violent tornado. It is a magnificent sunrise shimmering down on the fresh dew drops on lush blades of grass. It is the tears, the laughter, the screams for help, the healing hand. It is a composition of tunes of emotions that create a melody.…
Four rounds of IVIG. Each round spaced four weeks apart. All with hopes of a change for the better. However instead of better, we have a MIRACLE! A true miracle from God. Last week I had my manometery study. From the moment everyone looked at the testing screen people were in shock. We saw lines.…
In the summer of 2016 my life saw the walls of a hospital room for over a 100 days, a result of stays that lasted from July through September. It was the first time I was informed of being in intestinal failure. It was when we learned of genetic mutations that meant we were dealing…
“Every now and then it’s good to stop climbing and appreciate the view from right where you are” Lori Deschene As I sat this morning viewing the scenic northern woods, doing all of my medicines and medical cares, my mind was buzzing. This time of year is full of the words college, finals, graduation, late…
This Monday and Wednesday I celebrated making it to all three of my classes in the afternoon. I felt victorious. However, Wednesday night came with a migraine that lasted three days along with adrenal insufficiency. On Thursday I required IV Hydralazine for hypertension following blood pressure readings at rest in the upper 140s/90s-100s. On Friday…
“Accepting that the fight is painful allows you to focus on finding the good” It’s easy to put out what you want to be reality. Putting out positive, and “making” the image you want seen. For me, that’s an image of thriving despite the circumstances. An admirable quality of life. A person managing a grueling…
Hello Again… Sometimes when life gets hard, I cocoon myself. I close up. I try to brave the storm internally. The reason I fell silent online after my last post was because the following Tuesday things took a turn. As some may know, my family and I had the chance to drive down to Florida…
Rare Disease: The Movement to Save Lives It is an honor to speak about the people who search for light no matter how dark it is…These are the patients that enter appointments with files, documents, and lists of information. This information is not to be taken light-heartedly… this information is evidence, knowledge, details of their…
When I think of why I share this journey it is to raise more awareness for medically complex patients and their families. That means sharing the good, and the bad. The hardest parts are when the road becomes unknown. Territory that has been uncharted. A future cased over with doubt and concern. While we…
“Finding Peace in Dance” This battle has not been an easy one…However, it has shown the beauty in finding the peace within the fight. It has shown the most love, joy, and compassion I have ever known to exist. This journey has not just impacted me, but those who love and support me. They are…