How can I use spoons to explain how much simple tasks take from my sick body?

Terminology

       The spoon theory was written by Christine Miserandino. She developed the theory for people to understand the limited amount of energy people with disabilities and chronic illnesses face. In the theory, spoons are used as a metaphor for the amount of energy any given task takes. Energy and times of feeling good are […]

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Why are Zebras represented in the chronic illness community?

Terminology

You will hear me use the term “zebra” many times throughout my writing. When looking around my site and at my awareness gear, through Rare A-wear, you will also notice that zebra stripes and zebra awareness ribbons are a common theme. If you aren’t all that familiar with rare illnesses, you are probably asking yourself […]

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April Warrior of the Month: Monique


Warrior of the month

This month I introduce to you thirty-one-year-old Monique. Monique lives with EDS, or Ehlers-Danlos Syndrome. This is her main diagnosis, but she also has many secondary conditions and complications of her EDS. Her most limiting or concerning complications are the cardiovascular issues and her autonomic dysfunction. Monique has multiple congenital structural defects and multiple types […]

April 13, 2018

March Warrior of the Month: Ansley M.


Warrior of the month

  It’s the second Friday of the month, which means it’s time to meet another warrior! This month, I am excited to share Ansley’s story. Ansley is a 17-year-old who fights multiple conditions and fits the definition of a warrior to a tee. Ansley battles Eosinophilic Esophagitis (EOE), Gastroparesis, Mast Cell Disease, Ehlers Danlos Syndrome […]

March 9, 2018

DIY Awareness Ribbon Window Cling


Art and Craft projects

Today (February 28th) is Rare Disease Day which means today is a perfect opportunity to raise awareness for your conditions as well as other rare diseases which affect people’s lives every single day. Since it is Rare Disease Day, I thought it would be a great time to post an awareness craft. This craft is […]

March 1, 2018

February Warrior of the Month: Michaella Nisbet


Warrior of the month

This month’s warrior is the beautiful and courageous Michaella Nisbet. She is 22 and will be turning 23 on Valentine’s Day! Michaella battles several chronic illnesses.   At age 15, Michaella was diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease. Four years later at age 19, she was diagnosed with Crohn’s Disease, another […]

February 11, 2018

January Warrior of the month: Shelby Jordan


Warrior of the month

January’s warrior of the month is the inspiring and resilient Shelby Jordan. She is 22 years old and suffers from multiple chronic and debilitating conditions. She is diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Addison’s Disease (Adrenal Insufficiency), Hypothyroidism, Mast Cell Activation Sydrome (MCAS), Vasodepressor Syndrome, Osteoporosis, Small Fiber Neuropathy, Hashimotos Thyroiditis, Irritable Bowel Syndrome […]

January 12, 2018

Pet Canvas Tutorial


Art and Craft projects

January 2nd was my service dog’s birthday, so my craft for the week is dedicated to him. This is a fairly easy and inexpensive craft, but it ends up looking nice and can be a great thing to hang over your animal’s food bowl or by where you keep their leash and things.   Materials: […]

January 4, 2018

Setting realistic New Years Resolutions


Holidays, Tips & Tricks

2018 is right around the corner and that means the time to reinvent yourself and make those inevitable New Year’s resolutions has also come. It’s no secret that your body works differently than normal when you have severe chronic illnesses and disabilities. The part that we sometimes forget, is that our goals should also look […]

December 31, 2017