The Rare Artist Reception, a most important event of the 2017 Rare Disease Week in Washington, D.C. showcased Rare Disease artists from 2015 and 2016 entries. The artists of these beautiful artworks are patients – of all ages, in the US and Canada. Very heartwarming messages are provided along with each art piece, making it so meaningful by the symbolic expression of the rendered artwork.
12-year-old artist from Toronto Canada honoring her service dog Tory
This self-portrait symbolizes the power of the mind to conquer a disease /disability challenge of a rare disease.
“Ten Redefined” is a depiction of the sudden, intense pain of a debilitating disease that challenges one’s state of mind and body.
“Zebras Matter,” a revelation of the body and mind . . . what is within.
“Comfortable in my Shell” – from a patient who has three different rare diseases
“Waterlilies” to raise awareness about a rare disease which affected the artist and her mother.
“Girl With a Pearl Earring.” recreated by the artist who was inspired by a renowned artist with the same titled painting.
From 1988 to 1993 there were over 2,700 articles dealing with milk recorded in the ‘Medicine’ archives. … They were only slightly less than horrifying. First of all, none of the authors spoke of cow’s milk as an excellent food, free of side effects and the ‘perfect food’ as we have been led to believe by the industry. The main focus of the published reports seems to be on intestinal colic, intestinal irritation, intestinal bleeding, anemia, allergic reactions in infants and children as well as infections such as salmonella. … Contamination of milk by blood and white (pus) cells as well as a variety of chemicals and insecticides was also discussed… In adults the problems seemed centered more around heart disease and arthritis, allergy, sinusitis, and the more serious questions of leukemia, lymphoma and cancer.
Robert M. Kradjian, MD
While staying in the hospital after my abdominal surgery, I was started on a clear liquid diet. Then I was moved to a “full” liquid diet. It consisted of adding dairy, wheat, sugars, and petrochemicals to the menu through milk, ice cream, cream soups, and artificial colorings and flavorings.
Fortunately, before the surgery, I was able to talk to a hospital dietitian to let her know my body does not properly digest dairy or wheat, I did not want sugar, and I needed a substitute with protein.
She suggested soymilk. Too estrogenic for me with my cancer background, I said.
She was temporarily at a loss for how to help me get something more substantial on my “full” liquid day. Then she remembered she could get me some almond milk.
That works for me, I said.
I knew this would be a problem because the last time I went through abdominal surgery I was still limited to clear liquids during the 24 hours when I was supposed to get “full” liquids. I felt like I was starving after not having eaten for more than a week. I desperately needed protein and the hospital did not supply any.
The almond milk option indicated to me that hospitals are getting a little more up to speed on what actually is nutritious and what is not.
Another indicator is the hospital-floor refrigerator unit available to patients. When I stayed in the hospital years ago, those refrigerators were full of sodas. I cannot imagine anything worse for someone and who has had abdominal surgery than to add carbonated beverages that fill the abdomen with even more gas than is already added through surgery. My hospital roommate 25 years ago was drinking soda and complaining bitterly of her terrible gas pain. She did not make the connection between the soda gas and her gas pain.
So I am grateful hospitals are moving in the right direction.
However, there is still work to be done. I needed something substantial without dairy, wheat, sugar, or petrochemicals. I am grateful they did have the almond milk option.
And the hospital refrigerators… see the pictures of what they offered. Items filled with dairy, sugar, and long lists of unpronounceable chemicals. Really? For people whose bodies are so compromised they are in hospital beds?
Where are the fruit and vegetable smoothies? Where are the probiotic drinks? Or perhaps even trays of fresh fruits and vegetables for those ready for them?
Perhaps part of the reason the hospitals are not supplying these foods is because Americans are not used to eating them and therefore the foods might rot in the fridge unless health nuts like me come along to eat them.
And real food is more expensive than these standard options. Hospitals probably don’t have big enough budgets to provide real food for every patient.
Unfortunately, a poor diet can lead to health conditions that land one in the hospital to begin with…
Thriver Soup Ingredient:
If you are going to stay in the hospital, find someone to bring you better quality food for each stage of recovery.
During the interview, Dr. Pat said, “Only someone like Heidi can take this journey and write about. What she’s writing about is being able to thrive. What does that mean?”
As she talked, she had Thriver Soup in front of her. “It’s really good,” she said. “I was really, really struck by how what you’ve written in this book is really a toolkit for people that are struggling in life with many, many things.”
She said whether someone has cancer or not, “This book right here will help you…because when I go to the section on the ‘Power of Powerlessness,’ that is not a book just for people that are thinking ‘I might die.’ This is a book for those of us that know what it is like to die on the inside as well.”
She said she would use Thriver Soup for people who want to change their lives despite their history or background. “It is a book to get out of that sense of powerlessness.”
Talking with me, she said, “You do this so brilliantly in the book. You talk about looking fear in the face. I think that is so important. But I also love that you talk about looking fear in the face that all of us can do today in our lives.”