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Spoonie Society: We are Worthy, Brave, Magical and Tough.
Canvas Melange Blend V-Neck T-shirt
- Sizes XS - XXL
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About this campaign
Hi! My name is Whitney. I am a spoonie.
Wait...What is a spoonie?
"A spoonie is someone living with a chronic illness. It mostly refers to physical chronic illnesses, though it has been known to be a helpful term for those with chronic mental illness as well. It originates from Christine Miserandino's Spoon Theory story, in which she explains what it's like to live with chronic illness to a friend, and uses a handful of spoons to demonstrate. For example, daily activities that healthy people tend not to think about take tolls on people with chronic illness. You start the day with a certain number of spoons, and play your day around not running out. Socializing might cost spoons, using the stairs might cost spoons, lifting things might cost spoons, etc."
At 23 years old, I awoke with severe vertigo, slurring my words, and unofficially disabled. I had to stop driving and going to college. Doctors ignored me, saying I was fine, but was eventually diagnosed and treated for Lyme Disease. I lived in bed, isolated, terrified, unable to work, and surviving on disability. I experienced a few years of relative functioning after many years of treatment.
Fast forward ten years later:
I’ve been hospitalized four times since February 2017. After a medical leave from my job I was unable to return to work due to severe symptoms from my most devastating diagnosis to date: Myasthenia Gravis. Myasthenia Gravis is an acquired autoimmune disease that attacks the neuromuscular junction. It is considered a neurological disorder and is a form of Muscular Dystrophy, and its symptoms can be profoundly debilitating and often life threatening due to risk of respiratory failure. I experience severe weakness of the muscles in my eyes, muscles that control my breathing and swallowing, as well as my abdomen, neck, limbs, and hands.
Why do I need help?
I am a single mother of a beautiful, bright three year old. Since my disease worsens with activity and improves with rest, I now require assistance with daily tasks of living. Everything from errands to getting the mail, to laundry and cleaning, rides and childcare, dishes and meals. I have had to rely on friends and family for this assistance, and largely paid out of pocket for regular help. A cost which I cannot sustain.
Additionally, because my disease is considered rare, I have to travel out of state for medical care from board certified Neuromuscular Disease specialists. I have had and will continue to have a great deal of out of pocket costs to manage my illness. Costs I can no longer afford on my own.
I have exhausted my resources and recently lost state assistance I relied on due to a policy disqualifying me as a single parent household. I am unable to appeal this decision as the penalty for losing my appeal would mean I have to pay back the state all assistance already paid to me.
I have spent years pushing myself through extremely difficult circumstances as a chronically ill person and then as a single mother. I am very limited in what I can do to help myself and I sincerely hope you enjoy the design I have created for all chronically ill people everywhere.
Illness has taken so much from me, but it has taught me more. I believe more than anything that "spoonies" are the bravest, toughest, magical people I have ever known. We are worthy of so much more from this world.
Supporters
Whitney, it is my hope that you will be healthy again. You are fierce and creative!