Originally published by The Insighters® on October 18th, 2024: https://theinsighters.com/blog-posts/13 As I reflect on my HealtheVoices experience this year on the conference’s 10-year anniversary, I see a bastion of hope, of love, and of support for years to come. The love Johnson & Johnson and the HealtheVoices team has showered upon me is something I hold near and dear to my heart. And this year being the first year The Insighters® was able to partner has been especially meaningful to bring research opportunities forward to the patient community. I believe in inroads, in partnerships, and in camaraderie both in the patient advocacy community and amongst industry in the chronic illness…
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- acceptance, advocacy, autoimmune disease, awareness, coping with flares, Crohn's, immunocompromised, living with IBD, Mental Health, Mindfulness
Accepting My Crohn’s Disease to Finally Become Me
A person I admire once said, “Once you stop fighting your illness, you will allow acceptance to emerge.” I guess I had never looked at illness that way before. Society tells us to fight illness to our last breath, but is it really a fighting attitude we should have? This thought was something I began to ponder after hearing this statement. It took me months to process and understand what fighting vs. acceptance meant for my Crohn’s disease. Read more on the Healthgrades website: https://www.healthgrades.com/right-care/crohns-disease/accepting-my-crohns-disease-to-finally-become-me. Originally Published on Healthgrades.com, Written by Tina Aswani-Omprakash
- acceptance, advocacy, chronic illness, chronic pain, Colorectal Surgery, coping with flares, Crohn's, endometriosis, extraintestinal manifestations, Irritable Bowel Syndrome, Mental Health, Pelvic Floor Dysfunction, Pelvic pain, PTSD, Ulcerative Colitis, Women's Health
When Diagnoses Accumulate – My Endometriosis Journey
Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age…
- advocacy, affordable drug pricing, autoimmune disease, awareness, chronic illness, drug pricing, health insurance, pharmacy benefit manager
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first heard about it. For me, it always seemed like a no-brainer: go through my insurance policy to get access to prescription medications so I can contribute towards deductibles and meet my out-of-pocket costs many months later. But that can take forever and cost quite a lot of money…The reality is we might not have to do that and it might sometimes save us money to bypass insurance. I…
- advocacy, awareness, Crohn's, J-Pouch, living with IBD, Ostomy, Traveling with IBD, Ulcerative Colitis
7 Tips for Traveling With IBD, From Someone Who Gets It
Don’t let inflammatory bowel disease and fears of COVID-19 get in the way of your travel plans. Here’s what you need to know before you start packing. By Tina Aswani-Omprakash Summers are a time to look forward to rest, relaxation, and vacations. But for those of us living with inflammatory bowel disease (IBD), going away on a trip can often mean additional anxiety. And with the addition of COVID-19, anxiety levels are heightened. While many of us want to travel, we struggle to wrap our heads around how to travel when living with Crohn’s disease or ulcerative colitis, especially as new variants of the novel coronavirus circulate around the world. In fact, stressing out over travel…
- advocacy, autoimmune disease, coping with flares, Crohn's, IgG4, immunocompromised, living with IBD, Mental Health, Minority Health, Sjogren's
When Diagnoses Accumulate: My Sjögren’s Story
April marks Sjögren’s Syndrome Awareness Month, so I thought it was high time I shared my Sjögren’s diagnosis journey now that I’m finally getting answers and treatment to deal with a condition that has been plaguing me for years. It all started in November after my laparotomy surgery. The gastroenterologist presiding over my care in Pittsburgh had noticed how much Restatis (cyclosporine for the eyes) and other eye drops I was using for dry eye and observed how often I was needing ice chips for dry mouth while I was NPO from the obstructions, the surgery and the post-op ileus. The skin on my arms and legs was also flaking…
- advocacy, autoimmune disease, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis
Dropping Mask Mandates: A Time of Anxiety or Joy?
Last week I went back to school in-person for the first time in 2 years. There was a part of me that was excited, yes, but the other part of me was nervous as all heck. Meeting professors and students I had gotten to know virtually over the semesters felt like there was a human connection again outside of Zoom! And I have to admit that I really enjoyed going to class and being around like-minded people before this pandemic started. It was definitely a loss to go virtual but at the same time, going virtual meant people with disabilities like us could take care of our health while being…
- advocacy, autoimmune disease, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ulcerative Colitis
A Gutsy Feeling: Advocating for the Best Care Possible as IBD Patients
By Tina Aswani Omprakash **Supported by agutsyfeeling.org, a collaboration between Girls With Guts, Purdue University, College of Pharmacy, and the Academy for Continued Healthcare Learning** In today’s day and age, there are many treatment options for inflammatory bowel disease (IBD – ulcerative colitis and Crohn’s disease). But given all the new medications on the horizon, how do we as patients participate in shared decision making with our IBD specialists regarding which medication might be best for us? And how do we know when we have given the medication a fair enough shot and that it might be time to move on to the next treatment option? How do we know…
- advocacy, autoimmune disease, Colorectal Surgery, Crohn's, Dating & Relationships, Gastroparesis, invisible illness, living with IBD, Minority Health, National Minority Health Month, Ostomy, Ulcerative Colitis, Women's Health
Bachatera with a Bag: Theodora Shattering Ostomy Stigma Through Dance
Elegance, beauty, confidence, and rhythm: these are some words used to describe a female Latin dancer. Chemistry, passion, sensuality: these often come to mind when describing or watching a Latin dance couple. Each genre of dance comes with its own culture. Dance shoes, music and certain beats accompany each genre and of course, that exists within bachata, a form of dance I love to practice. Nationally and internationally, people congregate to study, perform and/or socially dance the bachata together and there is absolutely nothing quite like it! Being a bachatera (a female bachata dancer), and 50% of a bachata dance partnership with my husband Marcos, I am fortunate to experience…
- acceptance, advocacy, Arab American Heritage Month, awareness, coping with flares, Crohn's, Cultural Stigma, diversity, living with IBD, Mental Health, Minority Health, National Minority Health Month, Ulcerative Colitis, Women's Health
Basmah’s Journey: The Cultural Impacts of Being an Egyptian Crohnie
“You have Crohn’s Disease.” That’s what my gastroenterologist told me after my first colonoscopy in 2003. I was 16 years old, and nobody in my family, except for my mom who is a doctor, had heard of the disease.For the last 18 years, I have experienced multiple hospitalizations, taken a plethora of medications, and contended with related symptoms and illnesses such as extreme weight loss, loss of hair, C. difficile, osteoporosis, and blood clots. I am a child of immigrants from Egypt, and grew up in a tightly knit Arab Muslim community in Minnesota. I absolutely loved it (still do) when we all got together for picnics, holidays, and gatherings.…
