The IC Optimist is the quarterly magazine for IC Network members. It offers a variety of curated content from “Meet the Expert” interviews to feature stories, self-help tips to the latest research and clinical trial announcements. Learn more about our memberships here!
In this issue:
#1 – Meet the Pelvic Pain Expert – Dn Interview with Dr. Angie Stoehr – Dr. Angie Stoehr completd an in-depth interview discussing how patients can reduce pelvic pain as highlighted in her new book “When It Hurts Down There.” She explains that pain can be interrupted and reduced at several points, especially at the low and mid brain where both gating and context matters. Did you know that positive thoughts minimize pain messages in the midbrain whereas negative thoughts intensify pain messages? Her interview and new book are enlightening. Many of the self-help strategies that you and I might have dismissed now have context within the concept of altering pain perception. It will give you many new ways to approach pain and discomfort.
#2 – Consumer Alert – Long-Term Elmiron Use Linked to Eye Disease – In the most stunning news of 2018, researchers at the Emory Eye Center (Atlanta, GA) believe that they have discovered a new eye disease, pigmentary maculopathy, associated with the use of pentosan polysulfate (Elmiron). When we learned of their small case series, we launched our own ICN survey which more than 700 patients have completed to date with an astonishing 53% rate of eye disease in Elmiron users. In our lead story, we share our data so that you can see the depth and breadth of eye symptoms and diagnoses currently being reported. If you are taking Elmiron and experiencing any eye symptoms, please request an eye examination.
#3 – Feature Story – The Secrets of a Successful Disability Application – If you are pondering applying for disability insurance, you must be prpared for a long fight. It’s normal for patients to be denied once if not twice before they are eventually approved. Stacey Shannon shares ten tips for making a successful application, including tips and strategies by several patients who were approved for coverage.
#4 – Self-Help Tip – When Is Your Pain The Worst? – The secret to fighting flares is to understand what kind of flare that it is? Jill Osborne shares the easy question that she uses whenever patients call struggling with flares. If your pain is worse as your bladder fills with urine, that points to HL. If your pain is worse while you are urinating, that points to several other potential causes. Pain after urination points to a pelvic floor flare.
#5 – A Popular Allergy Medicine May Help Bladder Symptoms – Do you struggle with flares during allergy season? Do you have asthma? During the American Urology Association class on IC last Spring, Dr. Robert Evans specifically brought up Montelukast as a medication that often suggests to patients who struggle with allergies or asthma. Stacey Shannon shares the evolution of Montelukast research including new research this year which shows this as a viable treatment option for some IC patients.
#6 – Self-Help Tip – How To Get Better Sleep With IC – Did you know that sleep is just as strongly connected to health as diet and exercise? When you have Hunner’s Lesions, a bladder wall injury or CSS, getting a good nights sleep is challenged by often overwhelming sensations of frequency, urgency and pain. Or, are you so awake that you just can’t settle down? Stacey shares several tips to try!
#7 – IC Diet Project – Quick Flavorful Soups of the Holiday Season – Too much to do, not enough time? It’s a common lament during the holiday season. IC Author Bev Laumann shares how she approaches food during the holiday season and shares some great, bladder friendly recipes that will give you both comfort and joy: Slow-Cooked Beef Soup, Crab Chowder, Butternut Squash & Pear Soup.
#8 – A Special Holiday Treat – Bev offers a special holiday recipe for you to enjoy – Quick Peppermint Ice Cream. It’s lovely, luscious and very IC friendly! Enjoy!
Scattered throughout this issue are winners of the IC Awareness Month meme and poster contests.
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