Thursday, October 31, 2013


I like looking back on all the good times before I ever had IC or knew what was in store for me. I have so many happy memories that I take joy in revisiting. And since today is Halloween, I thought I'd share one of my favorites!

Halloween 1960: Me as Little Red RIding Hood! Mom made the costume for me (sewed the whole thing) and I LOVED it! Our pumpkin that Mom carved sits on the old "Hi Fi" in the background! Back in the "old days" we used to sit together and have dinner first, waiting for it to get dark. Back then, as children, it seemed to take forever for darkness to fall. Then my older brothers and I would just head out (without Mom or Dad mind you!) to go Trick or Treating! Back then, we got FULL SIZE candy bars; they hadn't even invented the minis that we give out today! After we were done, we'd come home, dump our loot out on the floor and trade with each other what we didn't like for something we did like! It was always a win/win for me and my brothers!

I look back at the fun times like this one with happiness and joy, remembering what a good time we had! It makes me happy to remember these experiences whether they are this far back in my childhood, or even as an adult right before I got IC! 


Wednesday, October 30, 2013


I know the first thing that comes to mind when we talk about getting our IC diagnosis is how it will or already has, changed our lives. What we have to give up; what we've lost because of having IC. This is a natural reaction and one we all go through. We must mourn the loss of what once was; doing things we used to do without giving it a second thought. Learning what to eat and what not to eat. What are we capable of physically and what sends us into a flare. It's a lot to take in and I know many of us feel overwhelmed by it all.

Over the 11 years since I was diagnosed, I too have spent a lot of time learning to cope with the many losses of things I loved. Having to sell my dream home and move in with my parents; not being able to ski anymore - oh how I miss that; not being able to exercise or run anymore; taking my niece to the theater every Christmas. So much that I just DID before IC that I can no longer do. It is a true challenge and for me, I spend a lot of time talking about how to learn to cope with these changes with my psychologist in therapy. That has helped me a lot and for anyone struggling or feeling stuck, I always encourage trying therapy.

But today, I want to talk about what I have GAINED by having IC! Gained, you ask? Yup! There is so much I have gained since being diagnosed I thought I would share what I feel are the things that have come to me since getting IC that would otherwise not have come into my life.
  • I have made so many new friends since getting IC and I am grateful for each and every one of them. Whether it's all my online friends that I have made or through my Support Group, I have a new group of friends that I would never have met had it not been for my IC. And the added plus is that each of you also has IC and we can talk and support each other in a way that those who do not have IC simply can't. We can laugh together about some of our situations, because if we didn't laugh, well the alternative is just not where I want to be. So all my IC friends help me find the humor in many situations and they support me and, hopefully, feel I support them!
  • Support Group! I know this seems repetitive, but getting involved with a local Support Group has led me to so many other positive things, that I will forever be grateful for my Support Group Leader, Barb, for putting that notice up in our doctor's office. I was the first one to call her and together I helped her make her dream of starting a Support Group come to fruition! Being part of that has given me so much in return, I will be forever grateful!
  • Discovering that I have the ability to help others and getting involved with the ICA as a Volunteer Patient Advocate! This has been a true blessing in my life and showed me that I was capable of being of service and gave me a reason to continue educating myself so that I could help others. Learning that I could help other IC patients has been a true gift. They always say doing something for others gives you more joy and satisfaction that you would have thought possible. It's true. I am thankful for the ICA allowing me the opportunity to work with them and talk to so many wonderful IC patients all over the country! They have given me so much in return that I will always be thankful for each person I have ever spoken with!
  • Writing this Blog. My family saw the change in me as I began my Volunteer work with my Support Group and the ICA. Heard me talking to patients and the stories I would tell about talking to others suffering and the resources and information I would share. It was their suggestion that I start writing this Blog and they encouraged me that I could do it. I would never have believed, before IC, that this was something I could do. I was nervous at first, trying to find my voice and talk about what I wanted to say. And would anyone read it or pay attention? Would I just be writing and no one would see it? But I have persevered and for all of you who follow my Blog, give me positive feedback and encouragement and tell me that you got something out of what I wrote, I am so thankful. This week was a HUGE milestone for me because one of my posts from the other day has blown away all previous posts with over 1,000 views so far, and it's still growing! I cannot say how excited this has made me and how happy I am that so many have come to my Blog and read that post. I hope many of the newcomers will stick around and continue to read my Blog and share it with their IC friends. I may never come anywhere near this many views again, but I hit a goal that I never imagined I could hit, and it made my week! THANK YOU ALL!
  • Fundraising for the ICA! As we all know, research funding is something we desperately need. I never imagined that I could become a passionate fundraiser but I have! I have managed to raise a little over $3,000 for the ICA and all without doing anything complicated or created a lot of hard work. I am so grateful for everyone who has made donations to my Fundraising Campaign It has meant so much to me that friends and family supported my efforts and made donations to my campaign! This is something that has become a regular thing for me. I write a letter that I email to all my friends and family around the time of my birthday and Christmas and I ask that they not buy me any presents, but instead make a donation to my ICA Fundraising Campaign. I also have been able to get the ICA to be part of my community's Annual Holiday Cookie Sale and raised funds that way. Because I have such wonderful neighbors who have learned about my IC through the annual cookie sale, when my Mom and I had a garage sale recently, neighbors brought things over asking us to sell them but to keep the money and donate it to the ICA! There are just so many wonderful and easy ways to help raise money for the ICA and I have been touched by so many people's generosity and kindness in helping me that it brings me to tears.
  • Raising Awareness is something that I didn't know I could either. But it is something I have become passionate about. I use Twitter (@Catwoman720) often and as a direct result of doing so, I have been contacted by several organizations asking that I share my story or submit a video. For those that may not have seen them, here are some links to some of my Awareness stories that have been published online:

  • Raising Awareness is something anyone of can do and I know others are doing it too. Thanks to Elizabeth Bingenheimer's efforts at raising Awareness, she was invited to appear on The Doctors and they recently filmed her cystoscopy with hydrodistention and will be doing a follow-up episode on IC and her story in the near future. I know others Blog, Tweet, write letters and more so let's all continue our joint efforts at raising #ICAwareness and imagine what we might accomplish!
  • The support of my family and friends has been such a blessing. I know how lucky I am to have such a great and supportive family and a very small, but close and supportive group of friends (BIC - Before IC) that have stuck by me and make accommodations to my needs so that we can still stay close and visit. You find out who your true friends are when you get sick, and for those that have gone out of their way to understand and support me, there are just no words sufficient to express how I feel about them!
It is not easy to avoid the daily struggles each of us faces in learning to live with IC and associated conditions. But if we stop, take a moment and think about it, maybe you too can find what you have GAINED by having IC!

Monday, October 28, 2013


OK, so you've been told you have IC. Now what? Well, hopefully you have a knowledgeable doctor that can work with you to find the best treatments that help you with your symptoms. But I thought I'd share my Top 10 list of things about IC for Beginners I believe you should know!

  1. Diet: This is an important one. Read everything you can about IC & Diet and how to go about doing an elimination diet to help you figure out your personal trigger foods. Steer clear right away of all caffeine, soda, artificial sweeteners, anything Cranberry, citric acid, coffee, wine. At the bottom of this post will be a link to the ICA website where you can read more about this. 
  2. Intimacy: This is a tough one. Intimacy is a major issue and challenge for a lot of couples where one of the partners has IC. Below is a link to the ICA website with some good information on intimacy issues.  I think there are some excellent tips to be found here. Also, a good physical therapist that is knowledgeable about IC and chronic pelvic pain should be able to help you with this issue. But if you can also find a sexual medicine specialist that is a good option as well. Just in case, I’ll post the link to the ICA website on this subject – maybe you’ll find a few tips to help.  I can also recommend a good book that was written by a former member of my support group and her husband. It’s called “Please Understand: The Interstitial Cystitis Guide For Partners” written by Gaye and Andy Sandler. You can buy it on
  3. Ice or Heat: If you are having pelvic/bladder pain, or urethral pain, vulvar/vaginal pain then Ice or Heat can be real life savers. Each of us is different so find which of these works for you. I personally love heat and my heating pad. But I know IC patients who love Ice even taking Ice packs with them on car trips or wherever they go. The same can often be done with a heating pad. Hot baths can be great as well. Some people like them with Epsom salt, others want nothing but water so use caution when adding anything to your bath. Some are easily set off by soaps with scents added so know what you can and cannot tolerate. I love a nice hot bath or even a shower if you don't have a soaking tub.
  4. Baking Soda:  A glass of water with a teaspoon of baking soda has been reported to help reduce burning and flare symptoms. The ICA website page on Flare Busters is a great resource 
  5. Drink Your Water: So many newly diagnosed IC patients have a tendency to stop drinking altogether. This is the worst thing you could do!  You need to drink enough water to keep your urine diluted because concentrated urine can increase your pain. Not drinking enough water can also cause dehydration, which puts you at higher risk for constipation, urinary tract infections, and other health problems. Eight glasses a day of water is recommended. However, talk with your doctor about how much water you need to drink. Some IC experts recommend keeping a bottle of water with you and taking a sip every 5 to 10 minutes.
  6. Get Educated: The best thing any IC patient can do is to read everything you can on IC and related conditions. Don't hesitate to write down questions to bring in to discuss with your doctor or print out things you have read to ask about so you don't forget to ask something you wanted to cover. This will also help you make the most of your time with your doctor. Take notes during your appointment too. You want to remember everything you talked about during your visit, so taking notes is an important tool to help you.
  7. If It Works, Don't Stop: If you find a treatment plan - whatever that may be - if it's working, don't stop! Some patients think that if they feel better they can stop whatever treatment has gotten them there. Don't ever stop your treatment plan without first discussing it with your doctor. But if it's helping, chances are if you stop, you'll wind up back at where you were when you started so as they say - if ain't broken, don't fix it!
  8. Find a Support Group: Look for a local Support Group in your area that you can join. There is a listing on the ICA website and I'll include a link below with the other links. See if there is one in your area or close enough for you to join. This can be a tremendous source of support, encouragement and information. If there isn't one in your area, consider starting one yourself. It's not hard at all and again, the ICA can help and they have a FREE Toolkit to help you get started. Often focusing on doing something positive like this can make all the difference in learning to cope with our IC.
  9. Become an ICA Member:  If you can afford it, become a member of the ICA! The ICA is the ONLY nonprofit association dedicated solely to improving the quality of health care and lives of people living with IC! If you can't afford to join yourself, ask friends and family to pitch in and give you a membership as gift instead of presents for your birthday, holidays or anniversary. Save your change for a year and see if you've got the $45 it takes to join! Help support the IC Community by supporting the ICA!
  10. ICHope Module: I've Blogged about this great new tool on the website. This new FREE tool for IC patients that we can use ourselves at home to find ways of learning to cope and strategies for dealing with our IC and pain is something that I think every single IC patient can benefit from! Link below!
These are my Top 10 things I believe every Newly Diagnosed IC patient should know about; heck all IC patients could find something here that I believe is useful. Below are links I referenced in the Top 10. I hope you will take some time to check them all out, read up and become your own best IC Advocate!

Saturday, October 26, 2013


Watch this video and see if you can imagine what it feels like to
have this going on inside your bladder. This is what IC patients
live with every single day of their lives. It's Invisible; you can't SEE it;
but it's there. 

This is a comparison of an IC Bladder vs a Healthy Bladder

The IC Bladder is on the Left; the Healthy Bladder is on the Right

Those of us living and struggling with IC every day are always trying to
explain what IC is and talk about how difficult it is for others to
understand. This Blog Post is intended as my "visual aid" to help
explain how extreme and severe IC is and why it is so painful.

To learn more about IC, check out the
Interstitial Cystitis Website:

Friday, October 25, 2013


Today Elizabeth Bingenheimer is having her cystoscopy with hydrodistention and The Doctors will be filming it for a follow-up segment on the show! I want to wish Elizabeth all good wishes as she heads into surgery today and thank her for pushing The Doctors to cover IC and do this follow-up! She is a true IC HERO and deserves a huge thank you from everyone of us suffering from IC! Let's show our support for Elizabeth and thank her for all her efforts and wish her well tomorrow!

If you missed the first segment, here's a link to The Doctors website Synopsis of the show. Scroll down to the section heading called Chronic Bladder Condition. You will see two video clips that make up the entirety of the segment that aired on the show. Thanks to Elizabeth's hard work, never giving up and continuing to work with the Producers of The Doctors, they are filming today's cystoscopy with hydrodistention and will be doing a follow up segment on IC with her surgery as a key part of that. None of this would have been possible without Elizabeth's dedication to raising IC Awareness for all of us in the IC community. She knows the first segment was not as thorough as we all would have liked but it was a great start. Now, thanks to her, The Doctors will be doing a follow up! This is a big deal and it's all because Elizabeth fought for all of us!

I put up a post on the ICA Facebook page about this. I'd love to get as many "Likes" or posts wishing her well etc. as possible! Please go to 

and look for my post and "Like" it and post well wishes to Elizabeth. Let's make sure she sees all these great positive posts! Spread the word too! Thanks to all who everyone who helps let Elizabeth know how much we appreciate her going on national TV to tell her story and today, allow The Doctors the rare privilege of coming into the O.R. to film her procedure! She is a true IC Awareness Hero! 

Thanks Elizabeth!

*** **** ***
Elizabeth in Pre-Op with The Doctors Producer
who filmed her procedure!

"I'm all done, procedure went well. Producer interviewed me before and filmed the entire surgery, no airdate yet because i will go on for a follow up."

Thursday, October 24, 2013


Not a lot to say today, except, OW! Some days are just like that. Today is one for me. I just hurt. I gave myself an instillation and that helped. But I'm waiting for a culture to come back so think I may have another UTI; we'll see. Anyway, today was just one of those take it easy, not do much of anything days for me! Tomorrow is another day!

I think this speaks for itself! I just hurt.

Wednesday, October 23, 2013


Shortly after using the Module for the first time, I decided to go back and check out a few of the many tools available in the program. What I chose to focus on today was to re-watch the video of Dr. Deborah A. Levesque that was presented at the ICA Patient Forum in Philadelphia back in June. I wanted to re-watch the video and listen to her talk about what people with IC can do to help ourselves. 

Then, I read the handouts from Dr. Levesque’s presentation. The handouts contain questions to help you figure out what steps you can take to manage your care, whether you are ready to take action to improve the quality of your care, and how you deal with having IC.

I like this tool. It really made me stop and think about what I do on a daily basis. Some of the steps I am already actively doing. Some I have worked on in therapy; however, ICHope helps reinforce my need to focus on the ones I am not focusing on enough. I like being reminded, by using a tool like this, of what I can control. Having specific things that I can do to take control, to help me manage my emotions, and to handle problems that arise really helps me feel like I am NOT helpless. I can do things to help myself. 

These strategies and tools may not be a magic bullet, but whatever I can find to help me improve the quality of my life I am all for trying. I find using these tools has been a real eye opener and is something that I am going to share with my therapist next week at my appointment. The Module contains tools and strategies that are so similar to things I work on in therapy that this just helps reinforce those sessions. 

Here are links to ICHope and the video and handouts that I have mentioned. If you haven’t checked out these resources yet, I encourage you to do so. ICHope is a great tool that can help each of us take control of our own health!

ICA Patient Forum Video Featuring Dr. Levesque

Tuesday, October 22, 2013


Well, today was my turn to be on the receiving end of the ignorance of living with invisible disease. It wasn't fun.

I had my weekly Instillation appointment down at my doctor's office this morning at 11AM. So my Mom drives me, and we head out an hour before the appointment as that's how far I have to go. I know, many of you go much further. It's a huge hospital and the parking lot is always crazy so finding a parking space is never easy but we managed to get one way down on the bottom level. Off we go to the elevator that will take us to the tunnel that takes you into the hospital and the professional building.

So we get on the elevator, go up to our floor and the doors open. And standing right there in front of the elevator, so close there was barely any way for me to get off, was a woman with her GIGANTIC baby stroller. I mean, some of those things should require a license plate! She was in conversation with another woman who also had a huge stroller and was with her husband and two children. So she actually had the double stroller. Both were in the way of me getting off the elevator!

Now, mind you, I'm not going after mothers here and am not making a generalization about all, but there is a segment of mothers who push those giant strollers around stores, the hospital, and many public places and just expect everyone to get out of their way. This has happened to me many times. I have also encountered very polite and courteous Mom's who do their level best to accommodate those around them. But today was the case of, I have a baby in a stroller and everyone had better get out of my way. The doors opened and she WOULD NOT MOVE; I waited a moment and tried to take a step forward - nothing. She wasn't going to move no matter what.

Now, if I was a better person, I guess I would have let it go. But I felt this was rude no matter who was trying to get off the elevator, but I was in pain, I have balance issues from my Epilepsy and it's very easy to trip and there's this huge stroller right in my way and I have to "skinny" my way past it. So as I did so, I made a remark. I said "would it hurt you to move over a little bit?" and kept walking.

Well, the woman blocking my way got on the elevator, but her friend that she was talking to was going into the hospital as well and from behind me I hear "that was SO RUDE!" This woman is with her husband and two kids in the double stroller. I turned around, looked at her and said "Yes, SHE was rude!" 

So then I get "She has a BABY" as if that's the excuse for behaving any way you want! What, a baby in a stroller means you get to do whatever you want and everyone else should just get out of your way! I turned again and said, "yes, well, that may be, but I have several disabilities, one of which can cause me to lose my balance, she was too close and I could have fallen on her baby!"

So then this woman is following me down the hall, spewing all kinds of stuff like "you have a mental problem"; "you are so rude"; "there is something wrong with you!" I forget what I said to her, but I attempted to say something to her but all I got back was "I'm glad you're not one of my clients; you're crazy". I told her I was glad I wasn't one of her clients too! Even nastier was when she pulled her husband and children aside and would not go over to the elevator bank up to the professional building since that's where I was going too and I heard her tell her child "we're waiting, that woman is icky!"

This woman made an assumption. She assumed that since I was dressed nicely, standing on my own two feet that I was a perfectly healthy individual and that I must just be rude and hate mothers or something. I know she thought that I was the one who should "make way" for her and her friend and their humongous strollers. Well, if I was getting off that elevator in a wheel chair, I guarantee you, they would have moved aside. But because I appeared able bodied, I got crap for expecting someone to be courteous and give me room enough to exit the elevator.

I got upstairs and was upset enough to tell the nurse about it. She was very comforting and reassuring as she gave me my instillation and I took deep breaths to try to let it go. But there is a very happy ending to this story.

I finish up and head down to the lobby to meet my Mom so we can leave. I walk over to where she is sitting and as I do so, I realize the woman who attacked me is sitting across the room with her family! I quietly tell my Mom this story and two other women sitting nearby overheard me telling Mom what happened. Well, they were such lovely women. They asked if it would be OK to say something to me and I said of course. BOTH of them have invisible diseases and have been attacked like I was and we all chatted about what happened. Between my Mom and these lovely women, I was so comforted and made to feel that I did not deserve what happened. I was so touched by these two women talking to me and supporting me, that we exchanged hugs. Perfect strangers brought together by a common experience that we could all relate to. As I was hugging these women, my Mom, looked daggers over at the woman who had attacked me and said to her - "we ALL agree with my daughter!" My Mom was ready to take her on, let me tell you! She didn't but, boy even though I am 58, my Mom still wants to protect her kids! 

So what started out as an upsetting incident ended with me meeting two lovely women, strangers who I will probably never see again, yet they touched my life in a positive, supportive way, and I am grateful to them. 

So after experiencing the rudeness of one, the incident transformed into a much better one where I was the happy recipient of the kindness of strangers! It changed how I felt and all of us got teary eyed! 

To those lovely women I will probably never see again, you have my sincere gratitude for stepping in to support another patient like you suffering from invisible disease that others don't understand! THANK YOU for such kindness and support!

Friday, October 18, 2013


By far, the most read post on my Blog was one I posted recently titled "Who Gets to Decide" about people judging those with invisible, chronic and painful diseases that others can't SEE. This is a continuing theme for many of us and something I feel strongly about that needs more attention. I posted about a segment on 60 Minutes recently as well that was condescending and incomplete and, in my opinion, biased and judgmental about individuals with invisible disease.

As I always do, I have several websites I check out regularly. One of these sites, The National Pain Report recently posted my story on their website and I posted a link to that for everyone to see. If you missed my story, here's the link.

I was so glad to get a story about IC published to help raise awareness, but this battle for those of us with Invisible Disease goes on. I was browsing this website this morning and ran across this story from one of their regular contributors and wanted to share it with everyone. We are not alone in this battle against people not believing us. 

Read this woman's experience as she goes through the physical exam process for her application for SSDI Benefits. It's shameful. But it just goes to show, we are not alone. Many are fighting this battle every single day!

It's a sad state of affairs in this country that somehow people suffering with Invisible Disease are treated like liars and accused of making up our conditions to rip off the system. The FACTS do NOT support this and we need to use these FACTS to battle the ignorance so many have about Invisible Disease. So here are some links that you can use when battling people who are ignorant about this perceived notion of abuse. Save these links and the next time someone spouts nonsense about how we're all faking it and milking the system, you will have some ammunition to fight back and try to do some myth busting on behalf of all of us with Invisible Disease!

Thursday, October 17, 2013


We've all been talking a lot this week about IC Patient Elizabeth and her appearance on Monday's The Doctors. I don't know a single person, or have seen a single post that wasn't so proud of how very Brave Elizabeth was for going on national TV and talking about her IC and how it affects her life! She is a true IC Awareness Hero in my book!

Elizabeth worked tirelessly for a long time writing the show and trying to get them to cover IC and she did it! She got it done! WOW! I have been trying to do the same thing for nearly two years and while I have gotten some stories published, I have not been able to achieve what Elizabeth did - get her and her story on TV! That is a HUGE accomplishment and we should all send her our thanks and appreciation!

I know the show discussed (so I'm not giving anything personal away that they didn't talk about on the segment she did) having a cystoscopy with hydrodistention soon. I know she would like, and I think it would be a great idea if The Doctors did a follow-up segment and followed Elizabeth as she has her surgery; maybe even filming it. That would be fantastic!

I know many of us, and I dare say Elizabeth too, wishes the segment was longer and went into more detail. I feel this way. Given the time spent, I think they did a good job, but there was so much missing if we are to truly have a discussion about how complex IC is and the many treatment options available. 

So here's what I think we all need to do. I want to encourage everyone to write to The Doctors and tell them how grateful we are for covering IC and Elizabeth's story. But express your desire to see them follow up on Elizabeth and her surgery. Ask the show to spend more time talking about IC and the latest treatment options, all the associated conditions, the severity of some IC patient's symptoms which often lead to disability etc.

I have already done this. Let's all support Elizabeth and each other! We got on the air once with a segment that was better than anything we've seen on national TV before. But let's keep on them and overwhelm them with letters from us asking for more thorough coverage! If Elizabeth got them to do the original segment all by herself, think what we might get accomplished if we all get busy writing the show! Make our voices heard. 

I wrote the show several times and to give you an idea, following is the content of my last letter to the show:

Dear Doctors:
I am writing again to thank The Doctors for being one of the first medical programs to do a segment on Interstitial Cystitis when you interviewed IC patient Elizabeth on the show that aired on Monday, Oct. 14, 2013.

I am an IC patient also and feel that, with the time given to the subject, the show did a good job. I can tell you that everyone in the IC Community is talking about it. It is the hot topic on all the IC Facebook sites that those of us with IC use to connect with each other. I am a Facebook friend of Elizabeth's who you had on the show and I consider her to be a true IC Hero for being so brave to go on national television to discuss her IC and how it affects her life. As mentioned during the segment, Elizabeth is scheduled to have a cystoscopy with hydrodistention. I think it would extremely important if The Doctors followed her through this process and perhaps was even able to film her surgery.
There is so much more that needs to be discussed about IC that was not covered on the show. As mentioned, the hot topic on all the IC FB sites is about the show. The overwhelming sentiment is twofold. One is gratitude that The Doctors gave IC coverage which helped to raise awareness by having Elizabeth on your show and talking about IC at all. But the second hot issue is that we are all very disappointed that the treatments available for IC were barely even touched on. Dr. Berman discussed two treatments - Elmiron and the cysto/hydro Elizabeth is going to be having. There are SO MANY more treatment options today and these should be discussed. Dr. Berman also never discussed how severe IC can be in certain patients; many of us have glomerulations and Hunner's Ulcers and some even have exceedingly small, very hard bladders and have extremely small functional bladder capacity which was never mentioned. In addition, many many patients like me have had little to no success with most treatments. I have 2 InterStim sacral nerve stimulators for my frequency and I use bladder instillations for my pain. But even with these treatments, I have never been able to achieve a level of relief significant enough to let me continue to work. I am on Disability due to my IC and overlapping conditions. Many IC patients are in this same situation. The number of IC patients with overlapping, comorbid conditions was never discussed either yet the majority of IC patients suffer from multiple conditions. Along with our IC many of us suffer from vulvodynia, fibromyalgia, irritable bowel syndrome, chronic fatigue, pelvic floor dysfunction, endometreosis, Lupus and more. This is one of the reasons it is so difficult to successfully treat IC patients; it's not just our IC. We are battling multiple medical issues requiring many different approaches to our care.

No two IC patients responds to any treatment in the same way either. I can tell you as a Patient Advocate that speaks to hundreds of patients all the time as well as talking with my local Support Group members, you could survey a room full of IC patients and no two of us would be on the same treatment plan! This is a very important topic to discuss. Many patients are in serious need of pain management but that is hard to find. Finding knowledgeable doctors is a real challenge as well.

You barely scratched the surface of a disease that affects not only women, but men and yes, children. The estimates are that 4-12 million men, women and children suffer from IC and it is believed those numbers are low due to misdiagnosis in men and children, and the number of women still not getting proper diagnosis as well.

Please consider following-up on Elizabeth and her surgery. PLEASE - we hope you will consider a longer follow up segment that covers more of what having IC is really all about. We are grateful for the coverage given to IC but we are in such desperate need of more knowledge about IC. We have no celebrity or high profile individual to speak for us. But those of us in the IC community are trying like heck to raise awareness all on our own. Please help us raise awareness and consider a follow-up and devote more time to this important, but little understood, painful and difficult to treat disease.

Thank you for your consideration.

Monday, October 14, 2013


I just discovered this wonderful new song and video by Sara Bareilles called "Brave". Many of you may have already heard the song or seen the video but I just discovered it today and was SO struck by it's message. I know I always post (and did so yesterday) an inspirational quote and song on Sundays, but this message was so inspiring to me. I feel it can translate to SO many aspects or situations in our lives whether it's battling IC or other struggles in life whatever they may be!

I believe each of us living with IC is Brave. I did a whole post on this earlier this year. Learning to live with IC and it's challenges is hard and I believe, makes each of us doing so very Brave!

So I'm posting the video for everyone to watch. Not only did I find it inspiring, but it's an uplifting, happy video that I found made me smile too - never a bad thing!

I feel like this should be the "theme song" of IC patients everywhere - who I believe are "Brave!"

Dedicated to IC "sister" Elizabeth who appeared on today's episode of
The Doctors to share her story and struggles of living with IC
to give a voice and raise awareness on behalf of IC patients everywhere!
Here's to Elizabeth's Bravery!

Here's a link to where you can make your own:

Saturday, October 12, 2013


This is the face of IC. I am the face of IC. Someone you know could be the face of IC and you'd never know it. We wear many faces. Sometimes we actually put a smile on our face and laugh and act normal even if we don't feel great. Other times, we are dealing with surgery, treatments, medications, side effects, pain and more pain. But our pain is Invisible. Maybe we look fine, but that's not our reality. In reality, IC patients suffer with many symptoms that are painful, chronic, difficult to treat and for which there is no cure.

So look at these photos. Sometimes I look fine while other times I look like a patient. But every single day I am fighting against the disease that no one can see. And the millions of IC patients everywhere are fighting the same battle. But we are also fighting against the misconception that we are not really sick. 

Take a long look at the Face of IC! When someone tells you they have IC, look them in the face and think of what they are dealing with every day. Then ask how you can support them.

This is the Face of IC; I am just one of the 4-12 million Faces of IC!

Thursday, October 10, 2013


One thing we always enjoy with our pets, especially as it gets cooler outside, is how they seek out every square inch of sunshine in the house to lay in and go to sleep! As the sun moves throughout the day, so do the dog and cat. It always fascinates us how they know where to go to find a spot of sun to sleep in.

So this morning, my brother's dog that we "doggie day care" every day was in our family room in my Mom's recliner enjoying some sun. Earlier, she was on the floor in a spot of sun but moved when the sun moved. I happened to stick my head in as my Mom was at her desk at her computer and we were chatting when I spotted a nice big spot of sun on the sofa. I thought, I'm going to go sit in the sun for a bit myself!

I chatted with Mom for a bit but she had to run to take my Dad to a doctor appointment. But as I sat there on the sofa in the sun, along came my cat Keiko and hopped up on a pillow on the sofa and laid down and went to sleep. I curled up on the sofa and fell asleep for about half an hour (power nap!)

WOW, did that feel good! Spontaneous nap in the sun just like the dog and cat! No wonder they like it so much! The warmth of the sun felt so good on my aching body and I just dozed off for a bit. 

As the weather gets colder, I find my aches and pains and symptoms get worse. I love heat therapy - hot showers, my heating pad, but in the summer it's just too hot to use them. So as soon as it gets chilly out, I resort to my heat therapies. I think I'll add curling up with the pets in the sun - if they'll share a spot with me - to my heat therapy! What's better than curling up with your fur friend in the sun!

Keiko in the Sun!

Tuesday, October 8, 2013


Today was one of those days. I was scheduled for an instillation appointment at my urogynecologist's office at 11:00AM. I scheduled it at that time on purpose because I also had an 11:40AM appointment already scheduled with my Cardiologist. Sounded good; get an instillation and I'd be all set for my next doctor appointment. Ha!

This morning the call from my Cardiologist's nurse comes (she's SO nice; I love her!). She tells me that the doctor is running 3 hours behind - you read that right - 3 hours behind! They just merged with a new medical group, have a new computer system and things are going very slow right now. She wanted to give me a heads up that he could still see me if I was willing to be patient, or I could reschedule if I wanted. I didn't want to reschedule so I told her since I already had another appointment down there today and my Mom and I could have lunch in between appointments, I'd keep my appointment. Sounded like a good plan, albeit a long day.

So we left the house at 10AM (it's an hour drive). I got there just in time for my instillation, and oh by the way, I have another UTI (ugh!) so not feeling good already. But the instillation felt good and I left to go check in with the Cardiologist's office and get my instructions. We did the paperwork and the nurse had my cell phone number and said to go to lunch and she'd call when they were ready. Sounded like a plan.

Mom and I had a nice lunch in the cafe at the hospital and relaxed for a while. By then it had been two hours since my instillation and I had to go to the bathroom. Usually they last longer but with a UTI, I don't always get as much time out of one as I would otherwise. I also usually have to catheterize after an instillation the first time and I carry catheters with me. Today was just not my day. I missed the mark twice so I had to throw out those two catheters. Now I'm getting uncomfortable and I don't know how much longer I'll have to wait before the Cardio doc is ready for me.

So I had a brain storm. I'm in the building, so I went back to my Urogynecologist's office and asked if I could speak with my nurse. She was SO nice and helpful too! I asked if I could have a catheter and if they had a mirror so I didn't screw up again, and if they'd let me use their bathroom and I'd take care of it myself. I told her I don't need her or any staff to do it for me, I just need some help with another catheter and I could take care of it myself. 

Well, no problem! She got me a catheter and a small mirror from one of the catheter vendors that she gave me to keep in my purse (yay!) and let me use one of their bathrooms and I was able to cath myself just like at home with no problem! Aaahhh!! 

Then just as I'm finishing, the Cardio's nurse calls and they're ready for me. So as I leave my Urogyne's office, I see my nurse and give her a big hug thanking her for helping me and off I go, one floor down to the Cardio's office!

Spent a long time with my Cardiologist as this new computer system is taking a long time. Probably the most time I've ever spent with him and we had quite the conversation. It was a great appointment. 

But by the time I was done it was 2:30PM and we'd left the house at 10AM. We got home at 3:30PM! What a long day this has been and I am absolutely exhausted!

I have to say this was a day I thought would never end and it was a mash-up of problems, problem solving, dealing with unexpected situations and making it work! In the end everything worked out just fine.

This is when it pays to have all your doctors in one building! I've got two doctors on the sixth floor; two other doctors on the fifth floor and one other doctor on the first floor! 

Whew! What a day. But I am grateful to have such good doctors with such caring nurses that worked with me and helped me out. I know I am lucky and I appreciate that I have such good and thoughtful medical professionals caring for me!

To them, I say THANK YOU! But what a day this was!

Monday, October 7, 2013


I started the New ICHope Self Help Module. It begins with some survey questions so that the module can understand more about where each of us is in our IC, both physically and emotionally. It asks us to describe our symptoms and any overlapping conditions we may have so that the program can understand the state of our condition.

After that, we are asked a series of questions to determine where we are in the process of dealing with our IC and its impact on our lives.

I really like this tool. As you explore the many pieces of the Module, it really takes you in many different directions. In the Personal Activity Center, there is a section that will help you get organized and develop questions you want to go over with your doctor to help you manage your pain and your care. You can actually type in your plan right in the Module. I find having things written down before going to see my doctor is something that is really helpful. It keeps me on track in my appointment so I don’t forget to ask something important. It’s so easy to get off track or topic at your appointment and it’s so important that we maximize our time with our doctors. So I really like this piece of the Module.

There’s a section on how to use Self-Care Strategies and another section on Staying Hopeful and Feeling Empowered. I really like these tools as well. I know many of us, myself included, often feel lost and don’t know how to stay hopeful. This is a tool that gives you guidance and real suggestions on what we can do OURSELVES to stay positive and hopeful and even more important, empowered!

The section on using Self-Care strategies is also excellent. Sometimes if we just stop, and go through a process like this, we can find inspiration and ideas on things we can do to help ourselves. Whenever I feel like there is something I can do on my own to help myself without having to go to the doctor, I feel really empowered and that I have more control over my IC. 

This tool can help you figure out where you are in the process of coping with your IC and offer real tangible suggestions and an Action Plan you can put into use to help you take control of your care, help you work better with your doctor and find ways of coping emotionally with your IC and pain.

I completed the Module and when you finish, the idea is to continue to use, edit, and actively work with the tools provided over the course of 90 days. So I am supposed to work on the suggestion the Module gave me based on my answers and go back in 30 days and do it again to see if I am progressing, and if by using these tools, I am improving in my personal approach to managing my IC. Then do it again 30 days after that.

At any time after going through the Module the first time, we are encouraged to really use the tools provided. There is Pain Tracker where you can track your pain and other tools you can use. This is meant to be an inter-active tool that is used frequently. Don’t just go through the Module once and leave. Take the time to explore all the helpful sections in the Personal Activity Center.

This is a tool we can use to help us manage our own care and how we cope with our pain. I like things like this and have often written on my Blog about using various things like meditation, music, yoga, etc. to help manage my pain. 

Doing activites like those and using this great new Module provided by the ICA can help each of us find ways of developing a plan to actively help ourselves. Often, having a plan and figuring out how you are feeling about where you are with your IC can make a huge difference in how we feel. I know it does for me. These are the type of things I also work on with my psychologist, so this tool can be an adjunct for me to do what I talk about with my therapist and great tools to help me remember to put into action the things we talk about. 

I hope everyone will get online and check out the ICHope Module and really explore it, and use it as it is intended. I think it will a be a great resource for each of us.

I’ll report back as I work through the activities and after each of the next two 30 days sessions.

Sunday, October 6, 2013


"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold.  They believe that when something's suffered damage and has a history it becomes more beautiful."  ~Barbara Bloom

I really like this quote. I know so many of us with IC often say we feel "broken" or feel like we are no longer "worthy" or that there is just something wrong with us. I like the idea that, just because we have IC doesn't mean we are broken, damaged goods etc. We are still beautiful, stronger than we give ourselves credit for and as many of us like to say - warriors!

So I hope you can read this quote and find the beauty that still exists in each of us instead of looking at having IC as some personal flaw! We are, each of us, beautiful no matter what.

"You Are Loved - Don't Give Up" - Josh Groban
This song is about knowing you are loved, recognizing challenges in life and the weight of the world and providing encouragement & motivation.

Friday, October 4, 2013


For the past few weeks my Mom and I have been working hard to get ready to hold a Garage Sale this weekend. It has been very hard work for me and I am in a lot of pain everywhere. Every inch of my body hurts like I didn't know it could hurt.

When I went on Disability and had to sell my home and move in with my parents, the combining of two households meant we've been trying to pare down since I moved in 6 years ago. It seems a never ending process and our basement, my closets - pretty much everywhere you looked, there was just too much STUFF! We've held several Garage Sales since I moved in but we both agreed we needed to have another one.

So we chose Thursday, Friday, Saturday - October 3-5, 2013. We advertised it to the development where I live for a "Preview" day on Wednesday. Well, I live in a wonderful community filled with such kind hearted and caring neighbors. I've written about our Annual Holiday Cookie sale where I've raised funds for the ICA and the committee that has driven me to doctor appointments. So we have quite a few neighbors that have become familiar with me and my IC. This is always good, as it helps raise awareness and I know there are a lot more people who know about IC where I live than did before they met me, helped me and supported our Annual Cookie Sale.

Well, on Wednesday, our Preview Day, we had a nice group from my community stop by to shop our sale. One neighbor in particular, asked if she could bring some items over to sell and said if we agreed, we could put whatever price we wanted on them and keep the money and she specifically suggested that whatever we sell her items for, that money be donated to the ICA! I was stunned and so touched! Others in the garage at the time heard us speaking about this and asked questions and when they made purchases, gave us more money than we were asking and said to give the extra to the ICA! It started to steamroll and I was near tears at how wonderful all my neighbors are! Even people who came in from outside our development got in on the act!

We still have one more day (Saturday) left for our Garage Sale but so far, of the money people have asked me to donate to the ICA totals $130!  And when I donate it to the new ICA Matching Challenge Grant, that amount will double. Who knows if I'll get more tomorrow, but even if I don't to have this unexpected fundraising come about because of the kindness of my neighbors is just wonderful. It just goes to show you that you never know what you can do to raise funds for the ICA without even trying! Depending on how much I make in total, I may add a percentage of my profits to donate as well. 

It's like a pile of dominoes falling down. This is the result of my getting involved with my Holiday Cookie Sale 3 years ago and having neighbors hear about the ICA at that event. Then when I needed help from our Volunteer Committee to get rides to the doctor, the word spread further. So now, this GIFT from out of nowhere falls in my lap because I speak out about my IC and spread the word and try as hard as I can to raise awareness.

You just never know where or how you can have an impact. I never expected this wonderful windfall for the ICA when we started planning our Garage Sale, but there it was! 

So if you ever thought you couldn't do it, or didn't know how - there are so many easy ways - some very unexpected - to have an impact and if you get creative, you too can make a difference!

Here's a link to the ICA website page with more information on the New Matching Challenge Grant.

Wednesday, October 2, 2013


I am so excited to see the ICA's Announcement today that they are launching ICHope Self Management Module! This new FREE tool for IC patients that we can use ourselves at home to find ways of learning to cope and strategies for dealing with our IC and pain is something that I think every single IC patient can benefit from!

This tool can provide a way for those who may not have access to counseling or therapy but feel they might benefit from it if they did. This tool can help us help ourselves and I am very excited to get started using it.

I am going to be going through the Module and Blogging about it as I do it. So keep watching my Blog as I write about how I think it's going, what I feel I'm getting out of it and keeping you all up to date on my experience with this great tool!

Here's a link to the ICA'S ICHope Self Management Module in case you haven't found it on the website yet. 

Stay tuned. I'll be keeping you all posted on how this is going as I go through the Module!