Interstitial Cystitis Association

If you’re an IC/BPS patient (or if you have IC/BPS symptoms or support a loved one with IC/BPS), we want to see you in our private group full of patients just like you!

On FB, search Interstitial Cystitis Association IC/BPS Support Group. You are not alone. 💙

IC WARRIORS
💪🏼 Living with IC/BPS has given you a strength unlike any other. It gives you the strength to keep going in the face of adversity. It gives you the strength to keep fighting even when you’re exhausted, in pain, and staring at the next mountain to climb.

This picture of me (Claudia) is from July 5 of this year. In addition to IC and other chronic illnesses, I had three back surgeries this year. I couldn’t even go downstairs in my own house for about three months before the first surgery due to the pain. 😖

🏔️ This was taken as I ascended the Manitou Incline, which is 2,700+ steps that seem nearly straight up. It’s an average of 41% incline with a max at 68%! I literally had to crawl up some of the steps. Through the pain, the exhaustion, and at times not even being able to see the peak, I made it! The strength I have gained from living with IC helped drive me up that mountain.

So, if you’re feeling crappy, tired, worthless, or any of the other not fun feelings we go through, remember: You have strength like no other! You are a warrior. 💙

We are very excited to share that the day-to-day operations of the ICA will soon be run by IC warriors, Claudia King and Laura Santurri. We believe having IC/BPS patients at the helm will create a stronger connection with our community. As the ONLY nonprofit in the US supporting IC/BPS patients, we are excited to provide the support every IC/BPS patient needs and deserves!

We want to know your top two go-to sources! Whether it’s Google, your neighbor, or your doctor (or none of those!), who do you turn to first for information about IC/BPS when you need it?

Did you have any other chronic conditions show up after IC/BPS?

Or, if you have a chronic illness, are you also experiencing bladder symptoms?

Are you wondering what treats might not be so tricky for your bladder? Here are a few suggestions that *may* work for you. Please remember, our bladders are all different, so what we tolerate is also different.

Here’s our suggestions to try: Carob, Caramels, Butterscotch, and peppermint sticks.

Do you have a go-to Halloween treat? Share in the comments!

Please meet our third and final new board member, Avery Singer! Avery is a passionate women’s health advocate, and we’re so lucky she wanted to help further the mission of the ICA.

Please say hello to Avery! We can’t wait to see the amazing things our new board members are going to do.

We’re excited to introduce our newest ICA board member, Holly Goodwin! Holly is a great addition to our board, and we can’t wait to see all the things she’s going to accomplish.

Please say hello to Holly, and stay tuned for our third and final new board member introduction later this week!

We are so excited to announce our new board members who started their first term on October 1, 2024! Please welcome Callie, who moved from our MAC to our board of directors, where she believes (and we agree!) that she’ll be able to make more of an impact for the ICA and for patients.

We know you will love them as much as we do, and we cannot wait to see the amazing work they are going to do for the ICA!

Stay tuned for the intros to our other two board members this week!

Join us on Nov 20 at Noon Eastern for a webinar featuring the people who support IC/BPS Warriors: family and friends. They’ll be answering YOUR questions after a panel interview.

This is going to be a good one! Register here:

https://webinarkit.com/webinar/registration/6718039c958206920b1ad315

🤞When it comes to deciding what treatments/medications you’ll try, who do you trust? Are you relying too heavily on the opinions of family, friends, and other patients?

🤔 While it’s great to lean on the experiences of others, it’s also important to educate yourself and consult with your own care team when evaluating what to try next.

💻 An educated patient is more confident in making decisions and feels more in control. Educated patients can also experience better health outcomes.

✅ So, the next time you’re trying to decide what to do, think about all the ways you can learn more about your options so you confidently make the best decision for you. 💙

*This information does not constitute medical advice or diagnosis. You should always consult your physician or other medical professional for advice on your particular circumstances.*

The ICA is proud to be the only nonprofit in the US supporting IC/BPS patients. We have many exciting updates coming to you in the next few weeks, so keep your 👀 on us!

✋ Let’s be real for a minute- staying positive when you have a chronic illness can be really tough. And once you fall into the spiral of negativity, it can be hard to get back out.

📋 Here are a few things that might help you stay positive day-to-day. Will it happen overnight? Probably not. But implementing a few new things in your routine really can make a difference.

🙋🏻‍♀️ I was in a really bad place a few months ago. I was struggling with my IC as well as back problems, and I couldn’t seem to get out of the funk. I needed a goal, some routine. My husband suggested that I shower and put on fresh clothes every day. I told him that was too much to start. So, my first goal was to change out of pajamas every day and into regular clothes.

✅ Did I make it every day? No. But as I started to get into the routine, I started to feel better. More positive. More in control.

❓What is something small you can do to start creating positive routine in your life?

🙁 As a chronic illness patient, one of the most difficult realizations for me was that I would never be the same person or be capable of the same things.

🤩 I now know that all of us are capable of amazing things no matter our diagnosis. Our circumstances and our paths may look different, but our ability to make a difference in the world is unchanged.

When you live with a chronic illness, you welcome almost anything that might make life a little easier. Here’s a few tips to help you make your next doctor’s appointment a bit less stressful.

🎉 The 2024 IC Awareness Month Proclamations were a success!

We’re thrilled to announce that proclamations have been secured in several states and cities, including Texas, Oklahoma, Louisiana, Georgia, Ohio, Maryland, Connecticut, Virginia, New Jersey, Illinois, and Colorado, as well as Orlando, Florida, and Denver, Colorado.

The ICA, with the support of the IC/BPS community, worked hard to achieve this recognition and our efforts are making a difference in increasing visibility and understanding of the condition. This success sets a strong foundation for future advocacy and awareness initiatives.

🔗 Learn More About IC Awareness Month Proclamations: https://www.ichelp.org/get-involved/advocate/ic-proclamation-requests