Crohn’s and a new study…

I have Crohn’s. This is an inflammatory disease which manifests for me in acute diarrhea and for which you need to see a gastroenterologist. One of the quirky things with Crohn’s is that it can also manifest in what is termed as extra-intestinal disease; i.e., conditions that have nothing to do with your guts. In my case, this includes rheumatoid arthritis and ankylosing spondylitis. I am very lucky in that the Crohn’s has been in remission for three years. I was un-/misdiagnosed from 1991 till about 2008, but I’m not here to whine. One of the interesting signs that you have a major problem with inflammation is recurring iritis. I have mentioned all of this to tell you that the Crohn’s & Colitis Foundation of America has invited me to participate in a Rare IBD Characteristics study through the University of North Carolina. They are interested in learning whether there are specific genes associated with characteristics such as iritis and ankylosing spondylitis.  I just received my information packet, which for now requires that I fill out several forms, but at some point I will send in a DNA sample so they can look for specific genetic markers. I have mixed feelings about genetics because there can be ethical issues involved, but if I can do something to help speed up a correct diagnosis for someone else, then I will have done something meaningful. Swabbing the inside of my cheek is so much better than being a pharmaceutical guinea pig. As I said, I am lucky to not only be in remission but am currently not taking any side-effect-ridden drugs.  Here are explanations for these diseases and some links for more information.

Crohn’s disease is a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus. http://www.ccfa.org/

Ankylosing Spondylitis: “ spondylitis” is an inflammation of the vertebra; “ankylosis” refers to joint fusion or immobility. http://www.spondylitis.org/

Iritis (a form of uveitis) is the inflammation of the iris of the eye. http://www.iritis.org/

Next post I will continue the ongoing saga of the orange leaf project. I think I have more rejects/mistakes on my design wall than I have actually prepared for completion. I did draw two more stylized leaves: my version of Monstera (Fruit Salad Plant) and Alocasia (Elephant Ear). Speaking of plants, the squirrel nutkins have been staying out of the garden but I’ll probably have to spray with Repels All animal repellant as soon as it quits raining. Here’s a handy tip. If you use the bottle that attaches to your hose, make sure to turn the dial to OFF before turning the water on AND before storing. Otherwise, you will have a stinky mess on yourself (and everyone will stay away from you, which is okay if that is your goal) and on your garage floor if the bottle tips over. Ask me how I know…

Flowers in a Crystal Vase, Standing on a Stone Pedestal w/Dragonfly

Flowers in a Crystal Vase, Standing on a Stone Pedestal w/Dragonfly

Painting by Abraham Mignon, part of the American Encounters: The Small Pleasures of Still Life exhibit at Crystal Bridges.  In addition to the hummingbirds flitting around, we had two large dragonflies yesterday.

Look at my flowers. There’s rosemary, that’s for remembrance. Pray you, love, remember. And there is pansies, that’s for thoughts. (Ophelia, Hamlet, William Shakespeare)

About icandyet.com

Hi—I’m Candy P. I live in beautiful Northwest Arkansas and write this blog about quilting. I love the entire process of quilting from design to piecing and appliqué, to free-motion quilting on my Janome. I have been sewing since I was five and started quilting in 1991 with a group in NE Minnesota. We used cardboard templates and scissors and did everything by hand. I have since made traditional quilts, donation quilts and Quilts of Valor; I’ve done paper piecing and foundation quilting but now really enjoy improvisational piecing using scraps from my stash or my hand dyed fabrics and making art quilts. I am also currently trying to finish any and all unfinished projects. I am so far behind I can never die. I have always been a maker, a sewist and needleworker, running the gamut from hand embroidery to macramé, knitting, crocheting, crafts, book binding and mixed media projects. I have taught a lot of handicraft classes including fabric painting, origami, and calligraphy, Dancercise (who remembers that) and my own exercise classes. When I’m not in the garage dyeing fabric or in my studio, I’m at Zumba or walking on local trails and photographing art or whatever catches my eye. I currently belong to Crystal Bridges, AQS, The Quilt Show, NWA Modern Quilt Guild and the Van Go-Go Girls (a local art quilt group). I occasionally make it to the piano and the golf course and enjoy cooking with my husband and generally wreaking some kind of havoc with my daughter. You can read my previous blog at Kandykwilts.blogspot.com but you cannot read my blog as northwind at The Quilt Show, apparently lost forever. I write about my current projects, mistakes and all, and often tell you what products I use (with no compensation). I am open to suggestions about blog posts and will be happy to answer any questions you may have about my projects or posts. Comment or email me. Feedback is most welcome—just be kind.

Posted on June 21, 2015, in Crohn's and tagged , , , , , , , . Bookmark the permalink. Leave a comment.

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