Let me take you through our (my) world.  Let me advise you though that through my professionalism I tend to be extremely upfront, honest, and often times “bold” when I encounter people who have no clue, don’t listen, or don’t research IC to educate themselves regarding this dreadful, painful disease…especially those who think they have the power to decide the fate of your life.

IC plucked my life out from under me in 2007 and reduced my functional ability by about 80% and this includes others diagnosed with IC as well.

IC is NOT even close to just needing a bathroom nearby. That’s so far from the truth it’s laughable. We only wish that was it!

I’ll describe what I know others and myself go through daily. It’s about heaviness, swelling, and indescribable chronic pain in our abdomen, bladders, and pelvic area; spasms in our urethra and often times rectum that radiate pain to our bladders and pelvic area (hence the diagnosis of pelvic floor dysfunction, vulvodynia, etc. often applies); and our bottoms burn from constant wiping or patting dry 20-60 or more times per day and being up all night with urgency/frequency which  literally knocks us off our feet onto the couch for days and sometimes weeks at a time.

Our coffee tables are not adorned with flowers, pictures, or pretty decor. Ours are full of ice packs, heat packs, heating pads, vaginal creams, Valium suppositories,  different types of pain meds (for inflammation; low back burning that radiates through our bodies; spasms; vaginal, bladder, and abdominal pain), GERD medicines, tissues, Pyridium (a bladder anesthetic which turns every orifice of our bodies Orange), a plethora of medicines, and other “must haves” lying there 24/7 not only “just in case,” but because it is what it is and there’s no known cure and we suffer and need all of this all the time…daily and we need these items at our side because symptoms change that rapidly. Maybe there’s a magazine we can try to focus on through the misery to take our mind off of our pain for a bit but that’s a bit of a stretch. Usually there’s a TV on in the background.

Let’s talk more about the dysfunctional “social” aspect of IC using myself and countless others I’ve spoken to throughout the country via phone calls, texts, and in the IC Support Group I have run in Rhode Island since 2008. At times the group is switched to phone calls and emails because of constant flare ups by most of us.

I refer to my “other life” and my “now life”. Very different.

I used to be an extremely active young lady. Now I have 10 minute sitting/walking time. (2 block radius). My life has changed dramatically along with countless men and women with IC.  First because I lost some friends due to my having to cancel constantly because flare ups and other symptoms can crop up in a minute or less completely taking your plans away. I like to call it “human contact”. That’s why we are usually diagnosed with depression and anxiety too. It’s a lonely disease. Speaking of “human contact,” your sex life suffers because it hurts for about 3 days after.

Usually at some point, fibromyalgia or chronic fatigue syndrome do rear their ugly heads. I was a hiker, rode my bike, (impossible with IC or pelvic floor dysfunction), was very social, outgoing, traveled a lot, drove a lot, (driving is a killer in your lower back and bladder…it’s ALL intertwined), went out a lot with my friends dancing or hanging out, shopping, walked the track daily, went to a gym, and that’s only the tip of the iceberg! I worked as a Mental Health Therapist all my life. I had to make the ugliest decision possible and that was that I had NO choice but to leave my job and apply for disability. I was out months or calling out sick all the time because I literally could not move off the couch because I was in pain and leaving a meeting more than once running to the bathroom sometimes not making it, because incontinence is one part of IC.

There are consistent, countless doctor appointments for instillations, physical therapy, and pain specialists. Feeling poked and prodded at constantly which hurts but is much needed to continue to find something that will kill off some pain for a small bit of time. Honestly, sometimes we don’t even want to be touched so we may cancel an appointment for a reprieve.

Most of us use “Squatty Potty’s” or other props to help us urinate. I and countless others have to use catheters because we go into retention. Some use diapers or, as I like to call them, “Ladies Wear” especially if I eat something IC disagrees with and literally raging diarrhea occurs. The most minute amount of urine in our bladders can set off a blazing fire. We have Lidocaine, Urelle, Pyridium, heat packs, cold packs, baking soda, etc. I could go on and on and these only quell the pain “just a bit,” we are not all of a sudden magically symptom free. I’d pay a lot of money to have that. However, IC has a mind of its own you see. We try to take control but it’s like putting out a house fire with one cup of water at a time. Some of us (as in myself too) have implanted devices called Interstim implants that have to be replaced every 7 years, because that’s how long they last.

We make huge attempts to be positive…take life one minute or one day at a time and learn to count our blessings. We are all blessed in our own ways. We try meditation, soft yoga, music and art therapy, affirmations, journaling, support groups, and anything our cohorts, doctors, nurses, therapists, physical therapists tell us to try to enhance the quality of our lives. We don’t want to live our lives like we do. We learn to be major advocates and we are fighters. We have more courage than you know.

We don’t enjoy applying and fighting for disability, but we have no alternative.  Our bodies have no alternative.

I strongly encourage anyone who knows they have to apply for disability for IC to do so and fight until you win. Getting a lawyer and help from the ICA Disability Packet to assist you through the process is a must!

There’s support out there on the ICA website. Use that support. It’s there for a reason and it works and who better than the people who “get it?”

I’ll help anyone who seeks me out.

And to all who don’t “Get It,” never take peeing for granted… enjoy the flow because YOU never know.

My blessings and prayers to all my fellow IC Warriors.

“We Stand Together”

Lynne LaBianca

IC Patient and RI IC Support Group Leader

By the time we relocated to Colorado for our final military move, I was feeling much better. I had fewer pain interruptions, though they still occurred. I continued physical therapy and ended up having a hysterectomy, which I had avoided for many years fearing my IC symptoms would worsen. Much to my surprise, my symptoms have been almost non-existent since having the surgery and I am likely living my most normal life for the very first time.

Being a Christian, leaning on God, and knowing that He will not leave me comfortless has gotten me through my toughest IC episodes. Not to mention the difficult experiences we endure supporting our military population. I have experienced firsthand how God is here for me, even when I become incapable of asking for His help.

Audrey Klein

I did find some relief through dietary restrictions but I had to eliminate most of the foods I had been eating (and I had been eating organic already for many years before I was diagnosed). That in itself was a huge adjustment but worth it to stop the pain. Luckily I eventually discovered a naturopath who has worked wonders with me. I am now free of symptom and have been for two and a half months now. I eat whatever I want and never experience pain or urinary discomfort. I am so very grateful to this amazing man who literally has saved my life! I would encourage any of you who suffer with this disease to consider working with a naturopath.

Yes, she drives me crazy, but most of that driving is IC. She is caring and loving and while she’s in a flare, I can show that I am caring and loving. Anyone can be caring during a great time, but during the lows, that’s when you show your real strength! If I can’t be here for her at her worst, I don’t deserve her at her best! So I remain the strong, patient, caring and loving husband to a woman living with chronic pain. Never will I give up on her. I remember having a kidney stone for a week when I could barely move from the couch, and yet she took care of me. I couldn’t imagine going through that pain several days a week for months and years on end…and yet she deals with this level of pain all the time. I was as productive as a 270 pound paperweight when I had my stones. I stayed on the couch curled like a fetus. She, on the other hand, is always pushing herself to do more. Her strength through her pain isn’t just amazing…it’s an example! The man that leaves such a woman is doing so out of cowardice because he knows he could never be that strong if the roles were reversed. If he was in chronic pain, he couldn’t shine like her. When I said I do, I meant forever regardless of chronic pain and sickness! I will always be here for you. You never have to worry when it comes to me loving you. Like I said, “if a man isn’t willing to be with you at your worst, he doesn’t deserve you at your best!”

I am so thankful for the woman that my God has blessed me with, Stacie Schoch. It may seem like a tough road but I wouldn’t want to go anywhere else with anyone else except you! I am sharing these thoughts because I am aware that there are people out there who have incredible healthy lives and they still don’t have this kind of love, for them I feel pity. I am just thankful that what we have is so strong.

Billy Schoch

And, so I am sitting here at my computer typing out my thoughts for “Stories of Hope” realizing that for the past 8,395 days I pretty much go through my days mostly “pretending” I’m just fine—even though I am actually not. From the very early days of my diagnosis I don’t allow my IC to get in my way. After lots of experimentation, I now know (most of the time) which medications or supplements to take that make me feel more comfortable—like Elmiron, calcium, Uribel, Atarax, Toviaz, Valium, Claritin, Zantac, and estrogen cream. Sometimes just a nice cup of chamomile tea and a heating pad are all I need.  Because I refuse to be sidelined by a cranky difficult chronic illness, I still travel a lot—with a backpack full of medicine to help keep me as comfortable as possible. When I’m not traveling, I walk several miles a week, take lots of yoga classes, shop, crochet, read lots of books, garden, attend symphonies, explore new places, play a role in my city’s government, meet friends for lunch, attend meetings, get facial treatments to help ward off wrinkles, search for new recipes, frequent consignment stores, get manicures and pedicures, etc. etc.

If there is a silver lining to having a chronic condition like IC, it is that you learn to just get up in the morning and just go through the day knowing that there may be a few roadblocks, but that there are always things that can be done to make you feel more comfortable. My mom once asked me what it felt like to have IC. When I told her it was like living with a bladder infection that never goes away, she asked why I’d never mentioned this before. My reply was easy—I simply asked her what difference it would make because even with the “inconvenience” of having IC I’d still be traveling, shopping, walking, going to yoga, meeting friends for lunch, etc. etc. etc.

Mrs. Randie Noell, California

I was a runner who worked out constantly and was very fit. In the last three years I have gained weight, become depressed, and have had to give up my career. However, just because my life is different, that doesn’t mean I have to stop living! About six months ago I decided enough was enough. I got serious about physical therapy; I joined a yoga class and began eating a Paleo diet. I have lost 20 pounds and even though I still have minor flares, they are nothing that I can’t handle. But what I am most proud of is, while on vacation, I hiked up to 11,000 feet in Taos Ski Valley in New Mexico, without pain medication! I am determined to prove that life is still good after IC!

I’ve been volunteering as an informal educator at an astronomy observatory for the last 5 years and have devoted all of my energy (which, with IC, is very limited!) into Earth and Space education. Through my volunteer work, I’ve had the opportunity to travel the country; visiting various observatories, working on research projects, attending conferences and workshops, etc. IC hasn’t kept me from living my dream! Sure, I’ve had to make quite a few life changes in order to minimize my pain, but I try never to let IC control my decision to live a life of adventure!

Miranda Heller

Actually, one group asked me to send a list of my meds, and then they would let me know if I could enroll. I had heard of other IC patients being unable to find a family doctor, but was shocked that it extended to ever single group I contacted. Not knowing where to turn, I called the local newspaper and asked to speak to the health reporter.  I told the reporter of my predicament and a couple weeks later my friends started calling to say I was the featured article on the front page of the newspaper.

The article was printed in the Asheville Citizen Times (North Carolina) May 1, 2014 and is titled “Easing Pain, or Prescribing Problem.”  A short time after that I called my preferred family practice group and was told that my pain medication was no longer an issue!  I felt like that was a victory for me and others that struggle for legitimate and necessary pain management. I have now been in this practice for two years, and my family doctor will prescribe my pain meds and makes it a point to stay up to date on IC literature.

So my advice, if you encounter problems receiving reasonable care due to being a chronic pain patient, is to call local media and tell your story. I have always found that most writers are looking for important, relevant, and new stories to tell. I hope the article I was featured in helped many other pain patients in my area.

Nancy Williams

That was 18 years ago.  It has not been an easy road. But, I am happy to say that I’ve discovered many things along the way that have helped me in this journey, and I managed to pull myself out of that dark place. I want to share some of these things that helped me.

Desert Harvest Freeze Dried Aloe Vera Capsules have been a godsend. Acupuncture, acupressure, probiotics, herbal teas also helped me a great deal. That being said, taking control of your life, diet and stress, are all factors that can affect the level of pain you may experience.

Sex is another big issue.  I’ve been prone to UTI’s for years because of IC. I’ve found that voiding your bladder before and after sex helps, and making sure both you and your partner practice good hygiene can help keep the UTI’s at bay.

Try not to panic if your IC comes out of remission and your pain continues for a longer length of time than you are used to. (I know that is easier said than done). Look at your surrounding circumstances and see if your life is balanced. I’ve discovered that learning to control my thoughts and emotions helps to keep pain levels under control.  Recently I had a 7-month flare, but prior to that I had been in remission for almost 2 years.  Nothing lasts forever, both good and bad.

Try to come to grips with the fact that healthy people simply do not understand what it’s like to never feel 100% healthy.  Even your friends and loved ones may not understand that your pain is real.  So learning to express yourself and accept yourself is very important. Needing to be heard and understood is probably the biggest struggle you will have during your IC journey.

Most importantly, don’t lose hope!! You can find ways to live life even with IC. When you do have those good days,soak them in and enjoy every moment you can!

Thank you to ICA for being a place where people can find solace in knowing they’re not alone.  The work they have done in educating and creating awareness for the IC community can’t be measured.

Also, learn to be grateful to those that are strong enough to get you through the tough times. My husband and boys have always been very understanding. I worried that my health issues would adversely affect my two sons. The greatest gift to behold is seeing them grow into compassionate and empathetic human beings, especially towards others with health or pain issues.  This is an important life lesson they may never have learned if they hadn’t witnessed my struggles. They’re my greatest blessing and I’m grateful every day that I get to have them in my life.

Finding your new “normal” is possible with the right attitude and faith in God.

Misty Wiese

With a combination of Elmiron, a clean diet, anti-inflammatory foods, supplements like Aloe Vera and marshmallow root, I am back to being myself again. Don’t give up hope!

Jennifer Blenkarn