Instagram for the Chronically Ill: #SpoonieLivingApp

blog post

[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper is a small clipart of a minimalistic camera with black text that reads “Instagram for the Chronically Ill: #SpoonieLivingApp” and below that in small red text is the URL for Thee Crohnie Grace Blog]

What started out as a small project for PhD student Sam Martin is now taking the chronically ill community to a whole new level. SpoonieLiving App is the instagram for the chronically ill, featuring stickers, profiles, and a wall of fame where photos can be posted and people can like said photos. The stickers include signs warning of “low spoons” or “low energy”, all the way to having specific banners for individual illnesses and disease.

Sam Martin is a spoonie herself, with Celiac Disease, IBS and Arthritis. To quote her “About SpoonieLiving” page, Sam is “writing a thesis about how people with chronic illnesses…use social  media to share experiences of their illness and find information.” As well as created to, “see if the use of illness and dietary related stickers would help individuals express themselves… It is hoped that using stickers will help people creatively manage their illnesses on a daily basis.”

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[Image shows what looks like a table in front of a window blurred out of focus. It then has a camera in blue and white similar to that of Instagram’s camera, but with a rainbow spoon beneath it that reads “#SpoonieLiving”. Then follows with the options of “Photo Library”, “Collage”, “Camera”, “About #SpoonieLiving”, and at the bottom has the “Wall of Fame”, “Inspiration”, and a settings option.]

Upon opening up the app you can pull pictures from your phone. It allows you to add a background if you want, then it comes up with the image editor. It’s all very basic and simple but serves it’s purpose. The fames come in various shapes, leaves, coffee cup, and of course spoons.

Then come the stickers, a variety of things are here such as traffic warning signs that say “No Energy Come Back Later”, a wooden spoon that says “Spoonie Life”, Banners that read “Spoonie Super Hero”, and of course the banners for individual illnesses and diseases.

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[Image shows a selfie of me at my college, on a blue/purple/pink geometric ombre background. On it has a clipart sticker from the app’s collection that reads “Straight Outta #Spoons” and at the top is a black and red banner that reads “IBD Warrior”, at the bottom there are a few of many stickers available. They are all banners, the first is red and blue with yellow text that reads “Managing PTSD One Spoon A Time”, the next is a purple and red banner with white text that reads “Managing IBD One Spoon A Time” and the last is a black and red banner with white text that reads “Stomp Out Transverse Myelitis”.]

I give them credit for the wide variety of illnesses that they cover in their stickers: Gluten Free stickers, Epilepsy, MS, Lupus, Coeliac, Chronic Pain, Diabetes, Fibromyalgia, Transverse Myelitis, POTS, Crohn’s and Colitis, Stoma Superhero Stickers, IBD, IBS, PTSD, Rheumatoid Arthritis, Klippel Trenaunay Syndrome, ME, Allodynia, Gastroparesis, Hypermobility, Mixed Connective Tissue Disease, Bipolar Disorder, Cluster Headaches, Chronic Migraines, PCOS, Endometriosis, TPN Warrior Stickers, CRPS, Sepsis Survivors, Depression, Ehlers Danlos Syndrome, Dysautonomia, Chronic Kidney Disease, Life Support Survivors, Catheter Dependents, Septic Shock, Arthritis, Allergies, Ankylosing Spondylitis, Lyme Disease, and even Invisible Illness Warriors and Undiagnosed Spoonie stickers for those who are still a medical mystery.

The Image Editor also includes textures, filters and photo adjustments.

The next unique feature about this app is the “Wall of Fame” where you can post your edited photos and go and like or comment on other’s photos to help them reach the top of the wall.

Currently at the top of the wall with 111 likes is user Glutenfreeoreo.

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[Image shows a girl in a black and white photo with long hair and glasses. On the photo is a teal and pink banner with white text that reads “Undiagnosed Spoonie” and the #SpoonieLivingApp watermark. She has a little medal with the 1 on it to show she is at the top of the Wall of Fame]

And it also allows you to look at your own profile to see all your photos you have made on the app, along with how many likes they are receiving.

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[Image shows a dark berry shade of purple banner that reads “My Profile”, it then reads on a white background in black text “theecrohniegrace” and my email along with my profile picture and the option to “Update Profile”. It then shows “My Posted Pictures” which then is followed by all my selfies with stickers from the app and so forth.]

You can email the creator with suggestions for stickers if you can’t find one for you, or just have some cute ideas for more stickers. It’s a great way to express yourself and find others as well. And if you post your photos on instagram, there’s a good change she will repost them to her instagram which can be found by clicking on the “Inspiration” menu on the first page.

Overall, I think this is an amazing app at letting spoonies express themselves and having a small community of their own, the stickers are fantastic (minus the misspelling of Crohn’s disease), and I love seeing when she uploads more, I can’t wait to see what Sam comes up with next.

Go check it out, it’s available free on ITunes and also in the Android Shop!

World IBD Day

World IBD Day

[Image shows a collage of various people, friends of mine, wearing purple and in the center reads “#WorldIBDday World IBD Day Crohnsandcolitis.org.uk 19.May.2016” ]

“As most of you know I was diagnosed with Crohns when I was 9 years old and I would not be the person I am without my illness. That being said, this same illness wrecks the lives of hundreds of thousands of people between harsh medication, surgeries, medical bills, feelings of isolation, and of course the actual symptoms of the illness. But it can also bring people closer together, make friendships, and start a change. I am Grace, I’m 18 (almost 19, I have an ileostomy, and I have Crohn’s disease. The disease may be invisible but I am not and I’m here to raise awareness. You can too by wearing purple for World IBD Day!” I posted on my social media on May 19, 2016 for World IBD Day. A day to recognize Crohn’s disease world wide and show that while the disease may be invisible the people who survive through it are not.

As part of World IBD Day friends of mine dressed in purple to show their support and spread awareness for IBD. I couldn’t have been happier with the results considering I had to actually to narrow down who all I could fit on the collage when it came down to it! I want to thank each and everyone of them who took the time to help me spread awareness of this disease whether you threw on a t-shirt, posed with a board with fact, or one of my friends even went through the entire process of putting her purple kimono for me. Each and everyone of you are amazing for helping me.

So for World IBD Day I am going to share some facts about Crohn’s Disease and Ulcerative Colitis from CCFA:

  1. Crohn’s Disease can affect anywhere from mouth to anus.
  2. Ulcerative Colitis only affects the colon
  3. Crohn’s and Ulcerative Colitis are not the same thing.
  4. Approximately 1.6 million Americans currently have IBD, a growth of about 200,000 since the last time CCFA reported this figure (in 2011).
  5. There may be as many as 80,000 children in the United States with IBD.
  6. These chronic, life-long conditions can be treated but not cured. IBD can significantly affect a patient’s quality of life.
  7. Crohn’s disease and ulcerative colitis are inflammatory bowel diseases that cause chronic inflammation and damage in the gastrointestinal (GI) tract.

Some of the symptoms of these diseases are:

  • Diarrhea
  •  Abdominal pain
  • Rectal bleeding
  •  Urgent need to move bowels
  • Sensation of incomplete evacuation
  •  Fever
  • Loss of appetite
  • Weight loss
  • Fatigue
  • Night sweats
  • Loss of normal menstrual cycle
  • Joint pain
  • Eye pain

Some of the Complications of IBD include:

  • Heavy, persistent diarrhea, rectal bleeding, and pain
  • Perforated bowel—chronic inflammation of the intestine may weaken the intestinal wall to such an extent that a hole develops
  • Toxic megacolon—severe inflammation that leads to rapid enlargement of the colon
  • Fistula—ulcers on the wall of the intestine that extend and cause a tunnel (fistula) to another part of the intestine, the skin or another organ.
  • Stricture—a narrowing of a section of intestine caused by scarring, which can lead to an intestinal blockage
  • Abscess—a collection of pus, which can develop in the abdomen, pelvis, or around the anal area
  • Perforated bowel—chronic inflammation of the intestine may weaken the wall to such an extent that a hole develops
  • Malabsorption and malnutrition
  • Eyes (redness, pain, and itchiness)
  • Mouth (sores)
  • Joints (swelling and pain)
  • Skin (tender bumps, painful ulcerations, and other sores/rashes)
  • Bones (osteoporosis)
  • Kidney (stones)
  • Liver (primary sclerosing cholangitis, hepatitis, and cirrhosis)—occurs rarely

                   For More IBD Fact Click Here

And remember, while IBD may be invisible we are not!

IBDDay

[Image shows me sitting on my front porch from the chest up. I’m wearing a purple flowercrown in my short red hair, I have my black and green glasses on, NJ tube, and makeup. I’m wearing a purple shirt with a light purple heart and a dark purple ribbon on it for Crohn’s Disease.]