Sunday, June 30, 2013


Yesterday the ICA held a Patient Forum on IC, FREE, for all IC patients and their families, friends or loved ones in Philadelphia, PA. For those of us that could not travel for whatever reason, the ICA made all the sessions available via web cast so we could still participate and receive the information. Online participants were still able to submit questions via online and that just added to the feeling of participating in the event, in my opinion. Videos of each session will also be available now on the ICA's website so if you missed it, you still can view each session!

As much as many of us wish the ICA had the ability to hold more of these Patient Forums all over the country near where each of us lives, I know they don't have the financial resources to do that. I know if they did have that kind of money, they'd be happy to attempt such a task. But just to get one of these events off the ground is a huge undertaking; lining up a location, getting sponsors, getting all those medical & scientific experts to speak to us, providing handouts and informational materials, is a huge undertaking. And I think they did an amazing job!

I am so grateful that the ICA is there doing this type of educational work for IC patients and health care providers everywhere, helping to raise awareness, lobbying Capitol Hill (which they just did recently) for research funding, maintaining the ICA website, Facebook page and Twitter page! And so much more!

I sat in my comfy chair, able to watch each and every session of the Patient Forum yesterday and felt like I was there. It was chock full of excellent information, research updates and opportunity for Q & A from all participants. 

To the ICA, I say "THANK YOU". If anyone who participated in this event, either in person, or via webcast, felt this was a worthwhile event, wishes the ICA could do more of them, then I urge you (if you are not already) to support the ICA by becoming a dues paying member. I am a member and it is one thing I save my pennies for all year long so that I can renew my membership each year. This is how the ICA is able to keep helping those of us in the ICA community. We need those of us taking advantage of the excellent services they provide to show our support and help keep them "in business" by becoming members. 

THANK YOU ICA for all you do! I know I am grateful for all you do for those of us suffering with this disease!

"Kind and Generous - Thank You"
Natalie Merchant

This song really speaks to me about my
personal gratitude for the ICA and everyone 
who has helped me in my struggle with IC!

Friday, June 28, 2013


Yesterday was just one of those days that anyone with IC knows is going to be a huge challenge and that the next day (or maybe even longer) we will pay the price. I am paying the price today.

My Mom had knee replacement surgery 6 weeks ago and yesterday she had a post-op appointment with the orthopedic surgeon; it was to be the first time she would see him since the surgery and it was an important appointment. I also had my six week follow up appointment with my Urogynecologist scheduled for later in the day yesterday. Mom also sees the same Urogynecologist for other issues, and since all of these doctors are down in the same area, which is an hour drive away, it always seems like a good idea to schedule them on the same day to spare us having to drive all the way down there multiple times.

So, Mom made her appointment with the Orthopedic surgeon for Noon. Our appointments at the Urogynecologist were for 3:40PM and 4:20PM respectively. We figured that would give us time to have lunch in between and plenty of time to get from where the ortho is located over to where the urogyne is. HA!

Right now my Mom is still not driving long distances so my wonderful niece took the day off from work to drive us and asked if, after our appointments, we could make a stop for something she needed and that was at a store on the way home anyway. Seemed doable, so we agreed.

Well, we left the house at 11AM to get to the ortho by noon. And there we sat! And sat; and sat, and sat. THREE HOURS we sat at the orthopedic surgeon's office! Now, I'm used to waiting in doctor's offices as most of us are. My IC doctor runs late all the time. But this was a new level of waiting! My Mom was proactive and kept trying to push things along and she finally got back there, but only after waiting for 3 HOURS! Luckily she was not long with the doctor, but we had no time for lunch - maybe if they had told us he was running that late, we could have poppped out for a quick bite, but when you never know if you're going to be called next, you don't want to take a chance and leave. So there we sat.

We got out just in time to hop in the car and just made it to the Urogynecologist's office by the narrowest of margins! All 3 of us starving by this time. Mom's appointment went fairly quickly, but my IC doctor is so great, he spent 45 minutes with me. As I am such a complex case and we have so much to discuss, he never rushes me, talks and reviews thoroughly what we have been doing since I saw him last and if we want to tweak anything. I got an instillation - WOW did I need that by that time!

So by the time I was finished, we didn't leave the hospital until 5:45PM. Then off to the errand for my patient niece who had been driving us and sitting around all day with us. She certainly earned the trip to the store for what she needed. Of course, when we left the house at 11AM it was hot and sunny. By the time we left the hospital it was POURING rain - AGAIN! Just what we needed to drive in! 

She didn't take long and after her errand was complete we decided we had earned ourselves some dinner. So we headed in the direction of home and made a stop at a restaurant we all agreed we could find something to eat (all 3 of us have special food needs) and got a wonderful dinner. Boy that tasted good! They served us quickly and we unwound and relaxed while enjoying a nice dinner.

Then it was time to finish the drive home, pulling into the driveway at 8:00PM! Can you believe that we'd been gone for 9 HOURS! We couldn't. All three of us collapsed when we got home and luckily I did sleep fairly well last night.

These are the challenges that we have to deal with that never used to turn us into a pile of mush! Remember going shopping and out to lunch for an entire day before IC? Those were the days! Even working (some of you still do and it's a struggle I know). We used to be able to do things like this, but not anymore.

Now a day like this takes a huge toll on our bodies and there's just no getting around it. This did not turn out as we anticipated and had we any idea we'd be cooling our heals for 3 HOURS at the first appointment we would never have scheduled things this way. You know what they say; the best laid plans!

But as the title of this post says, this was a big challenge and today I am beyond exhausted and will not get out of my chair except for bathroom runs and food! In fact, a nap is in order very soon. I know everyone can relate to these types of challenges. Just getting to and from a doctor's appointment can send us into a flare or state of exhaustion that can take days to recover from. So today I will rest. Try to regain what little energy (I use the term loosely as an IC patient) I have. 

Hopefully tomorrow will be a "better" day!

This is me today!

Wednesday, June 26, 2013


Just recently, a previous Blog Post I wrote was regarding how excited I was about my efforts to raise #ICAwareness using Twitter.

Well, it's gotten even better since then! Since my post, I have gotten Congressman Brad Schneider (who just happens to be my Congressman) to follow me back on Twitter. As you should recall if you are also on the ICA Facebook page, Rep. Schneider of IL is asking his colleagues in the US House of Representatives to sign on to a letter addressed to the director of the CDC. The letter encourages the director to support programs and activities that help those with IC. So to get him to follow me back on Twitter is, to me, a HUGE "get" and I am beyond excited!

Today, I sent out a Twitter message to all that I am following and I got a REPLY that has me quite excited as well. Check this out:

If you are looking for a place to start, go to my Twitter page and see who I am Following, what my Tweets are and just go from there. You can find me on Twitter here:

Let's all get EXCITED about helping to raise awareness about IC. One person CAN make a difference! Imagine what we could accomplish if everyone with IC did the same! 

Tuesday, June 25, 2013


So last night was one of those nights all of us suffering with IC goes through. I got zero sleep at all! What is it about the night? Things seem to always act up right when we want to sleep! It's classic. I was in so much pain from head to toe and bladder in between and nothing would help me. I am unable to take anything for pain except over the counter things like aspirin or Tylenol. SO I finally caved in around midnight and took some Tylenol PM. I HATE taking it because I get such a "hangover" from it, but desperate times and all! So I took the appropriate dosage and tried to go back to sleep. Nope; not happening!

Usually, this will work for me and help me fade off to sleep, but not last night! I kept getting up and walking around in the dark; catheterized myself to make sure my bladder was truly empty and not causing all this pain. Still no relief. Every time I would go back to bed, I was tossing and turning unable to fall asleep. So again, got up and walked around in the dark. My cat got tired of this and left to sleep in the hall. I went over and sat down beside her and tried to take comfort in petting her and listening to her purr.

Around 4:30AM I went downstairs and made myself some toast and got something to drink, went to my office and turned on the tv and sat in my comfy chair. After eating my toast I put my head back and at some point around 5:45AM I dosed off until around 8:00AM at which time the cat was demanding breakfast. So I fed her and then went back upstairs and crawled into bed and fell asleep until about 40 minutes ago! 

What the heck! I guess sheer exhaustion and lack of sleep finally takes over and I was finally able to sleep. I dragged myself out of bed a little while ago because I don't want to sleep all day and then not be able to sleep tonight. But, of course, I have bad case of "medicine head hangover" and feel downright lousy.

I'm proud of myself because I didn't fall to pieces. I would have in the past but all my hard work in therapy has paid off and even though I was quite frustrated, not falling apart is a major breakthrough for me. I wish none of us had to go through these episodes, but they seem to be a part of our life with IC. Some of you have them all the time, while for others they are sporadic. I get them sporadically, but fairly often. Just not every night. 

Living with IC is an everyday challenge. It's often described as a roller coaster and I think that's accurate. "Good" days; "Bad" days; and everything in between. I will give myself permission to just be a lump today and do nothing. I know a lot of IC patients don't have that luxury; they have families, work and worry about losing their jobs if they call in sick after a night of no sleeping. That's unfortunate. It's why we must work hard to continue to fight for better treatments and relief from IC. 

What IS it about the night? They are the worst for some reason and when we experience sleepless nights it impacts us all that much more than dealing with our pain during the day. 

Here's to a better night's sleep for us all. As Shakespeare said:

"To sleep: perchance to dream: ay, there's the rub"

Monday, June 24, 2013


As an IC patient (and more) most of us spend countless hours in doctor's offices, hospitals, pharmacies, you name it. If it's related to medicine, we're spending time there. Unfortunately, not every patient is aware of their rights regarding privacy, so I thought I'd talk a little about that today.

Many of you are probably familiar with HIPAA (Health Insurance Portability and Accountability Act) of 1996. Most of our doctors ask us to sign a new HIPAA privacy form at the start of each new year. But how many of us actually read it and pay attention to what it says. How many of us know what OUR rights are whenever we interact with any doctors, hospitals, pharmacies etc.

For example, a classic violation when visiting a doctor's office is standing at the main reception desk having to discuss things like your name, insurance, and even in some cases, tests, surgeries, prescriptions and so forth? If the doctor's staff is doing this where everyone can hear, that is a direct violation of HIPAA privacy laws. You ever notice how many doctor's offices have that sliding glass window but it NEVER gets closed? That's there for a reason. They are supposed to keep it closed so people in the waiting room can't hear phone conversations and conversations with patients. Patients are supposed to be on the other side of that window when discussing any information related to your health. Yet, this is a common violation. If this is happening to you, speak up if you are uncomfortable. Pay attention when you are at the office if they close the window when taking phone calls. Can you hear everything they are talking about with a patient on the phone? Would you want to be that patient on the other end of the phone knowing everyone in the waiting room could hear that conversation? 

Pharmacies are another huge violator of HIPAA privacy rules. Most have no private area but have a big reception area where you drop off and pick up prescriptions. You have to give out your name and address and frequently other private information such as insurance, doctor, the prescription being filled etc. all standing right there at the desk where everyone else in line can hear you. This is a violation of your privacy. I personally have written letters and complained to certain pharmacies about this practice and since I got nowhere, I no longer use them. I found a nice small pharmacy (which, by the way, has much cheaper prices for things that aren't covered) where they know my face, know who I am when I call and go out of their way to be discrete when talking with you. This is how it should be, but it isn't the case at almost any major pharmacy you walk into.

Hospitals have been notorious for violation of HIPAA privacy in certain circumstances. If you've ever had surgery at a hospital, then you know the doctor goes out to speak with your family/loved one(s) waiting to hear how everything went. At many hospitals, the doctor walks into the family waiting area and just starts talking to the family and everyone else in the room can hear. Again, a violation of HIPAA privacy laws. My hospital has recently done a lot of renovations and the Family Surgical Waiting Room now has several private conference rooms where the doctor takes the family to discuss the patient's surgery. This is how it SHOULD be. Before these renovations, my Mom would always be out in the waiting room and said every doctor would come in and she could hear everything about every patient and that's just wrong. My doctor, on the other hand, ALWAYS took her someplace else to tell her about me. He did it right even when they didn't have the accommodations right there. Pay attention to this too. If your hospital doesn't have private consultation rooms and the doctor starts talking in front of everyone, ask to go elsewhere and speak privately. This is your RIGHT!

We often take for granted that because we are dealing with medical professionals, that they would never violate our privacy. And I don't believe many do it on purpose. Although I strongly believe Pharmacies should know better and re-design their pharmacy areas to accommodate patient privacy. But we often don't speak up, even when we are uncomfortable; no one likes confrontation. But if you feel your privacy is being violated, speak up and ask for the privacy to which you are legally entitled!

Here's a link to information on HIPAA where you can familiarize yourself with the law and where HIPAA applies and where it doesn't. Get educated about this important topic.

Sunday, June 23, 2013


Part of being a good friend is being there for a friend that is sick. You may feel uncomfortable when you visit a sick friend and you may worry about saying the right thing. It is important to remember that this friend is the same person that she always was. If you feel uncomfortable about being with her, share your feelings and ask if there is anything you need to know. More often than not, your friend will want you to just be yourself and you will see that nothing has changed as a result of her illness.

"I'll Stand By You"
The Pretenders

Saturday, June 22, 2013


I'm kind of excited. My efforts on Twitter are starting to pay off! I have been using Twitter daily to send Tweets to all sorts of relevant people and organizations; i.e. doctors, medical organizations & publications, politicians and more. I made sure to go to the ICA's Twitter page and find out who they Follow and I am also Following most of the same people/organizations etc. that the ICA does. 

Well, as of today, I now have 19 Followers; half of which the ICA follows and that also Follow the ICA! I'm very excited about this! It's not where I hope to get; I want more Followers so that my efforts to raise  has some impact. But persistence clearly pays off and I am getting Followers and I'm just one person. Imagine what we could do if we all got on Twitter and did the same thing!

This week, I also wrote to several newspapers, online publications and television shows via their websites encouraging them to cover IC as an important health topic. I may not get anywhere on my first try, but I'm not giving up! This is important and so easy to do!

I know I've Blogged on this topic before encouraging everyone to get on Twitter and help raise awareness about IC. But seeing how many Followers I now have has really encouraged me to keep at it! 

There is always SO MUCH talk about raising awareness for IC and I agree. But let's not just talk about it. Let's ALL get involved and do what we can to help our cause! The ICA asked us to write our Congressional Leaders asking them to sign on to Rep. Schneider's letter to the CDC; how many have done this? Since Rep. Schneider IS my Congressman, I didn't need to call him and ask him to sign on to the letter but what I did do was send him a Tweet thanking him for leading the charge in this important cause! Guess what? He responded via Twitter and "Favorited" my Tweet! That was very exciting! I'm really working on trying to get the Congressman to "Follow" me and let him know that, not only am I a constituent, but I voted for him and asked him to Follow me on Twitter and help me raise IC awareness. Politicians don't generally Follow people like me, but one never knows and I'm not going to let up. I also sent Tweets to other political figures on this topic and my two Senators. 

These are all such simple things we can do; making a phone call to your Congressional Rep. is quick, easy and believe me, they want to hear from their constituents. It seems intimidating at first, but now I've done it so many times, I'm comfortable doing it and you should be too.  

If you are looking for a place to start, go to my Twitter page and see who I am Following, what my Tweets are and just go from there. You can find me on Twitter here:

Let's all get EXCITED about helping to raise awareness about IC. Let's put up, or you know ....

Friday, June 21, 2013


This is SO important that I am using my Blog to help the ICA spread the word and encourage everyone to contact their Congressional Representative to sign on to this letter. Since Rep. Schneider IS my Congressman, I Tweeted him thanking him for leading the charge on this issue; he actually "Favorited" my Tweet back! Don't just talk about the need for research and funding; DO SOMETHING!


Representative Brad Schneider (D-IL-10) is asking his colleagues in the House of Representatives to sign on to a letter addressed to Dr. Thomas Frieden, Director of the Centers for Disease Control and Prevention (CDC). This letter encourages Dr. Frieden to support programs and activities that help those with interstitial cystitis (IC), including the IC Education and Awareness Program. The CDC IC Program promotes public awareness of IC through education for healthcare providers and the general public. It also develops enhanced communication channels for information sharing among patients and their families, healthcare providers, researchers and public health scientists. The deadline for legislators to sign on is June 28, 2013.
Help Rep. Schneider encourage House legislators to sign on to the IC letter before the deadline on June 28, 2013
Action: Contact your Representative at their DC office by phone and/or email, ask for the staff member that works on health care issues, and relay the message below. To determine your Representative, visit, enter your zip code in the box in the upper right-hand corner, and follow the instructions. You can find your Representative’s DC office phone number on their website.

Sample Message:

Note: If a Representative is interested in signing on to the letter, they can do so by contacting Cara Toman in Rep. Brad Schneider’s office at or (202) 225-4835
Please contact us to let us know if you have taken action.
Wed, 19 Jun 2013 14:34:00 GMT 0f517a34-b736-4c94-ba46-a22c859e6c99 ACTION ALERT – SUPPORT NIH FUNDING


The Senate is considering the budget resolution for fiscal year 2014 (FY14) this week, a non-binding blueprint for Senate appropriators. Part of the discussion is an amendment proposed by Senator Jerry Moran (R-KS) that would call for Congress to increase NIH funding by $1.4 billion in the FY14 appropriations bill to keep up with the rate of biomedical inflation. Contact your Senators TODAY and Friday, March 22, to ask them to support the Moran amendment (Senate Amendment 137) to the Senate FY14 budget resolution.
Only through steady, sustainable, and predictable funding can the NIH sustain the highest quality biomedical research to help improve the health of all Americans. In addition, the NIH plays a critical role as an economic engine, supporting approximately half a million jobs nationwide. Our commitment to the NIH will remain an important factor in saving and improving lives, bolstering the nation’s economy and driving US global competitiveness.
You can identify your Senators by going to and selecting your state in the “Find Your Senators” box in the upper right hand corner of the webpage. Select the “GO” button and the name and contact information of your Senators will appear. Phone calls work best, however, please feel free to email your representative this important information.
Tips for communicating with congressional offices:
  1. Identify yourself as a constituent and ask to speak with the legislator’s Healthcare Legislative Assistant
  2. Tell the aide that you are a member of the Interstitial Cystitis Association
  3. Ask that the legislator support the Moran amendment (Senate Amendment 137) to the Senate FY14 budget resolution that would call for Congress to increase funding for NIH
  4. Briefly explain why these issues are important to you
  5. Give the aide your contact information and ask to be informed about the actions the legislator takes in response to your request
Thu, 21 Mar 2013 22:49:00 GMT df71893f-18f7-40d7-bb2b-4e9090a91f16 Help Us Prevent Cuts to IC Research


The Office of Management and Budget (OMB) has estimated that sequestration—significant across-the-board cuts to programs in the federal budget—will immediately cut $2.4 billion from the NIH, FDA and CDC in Fiscal Year 2013. What do these public health agencies do for IC patients?
    • The NIH is the principal source for medical discovery that lays the path for private sector innovation. The ICA Pilot Research Program provides IC researchers with the initial grant monies needed to get their projects literally "off the ground". However, for discoveries to go from bench-side to bed-side, we need the NIH to fund larger studies.
    • The FDA ensures that medical treatments and devices, including those for IC, are safe and effective.
    • The CDC conducts and supports the public health research and programs needed to contain disease outbreaks, promote wellness, and provide basic support for a safe and healthy society. This includes bringing public awareness to IC.

Reducing funding for these important health programs would disrupt critical IC research and result in fewer outreach efforts to educate the public, patients, and healthcare providers about IC. However, there is hope! Please join us in these efforts by taking the following steps:
    1. Call (202) 225-3121 to get the phone numbers of your legislators (two Senators and one House Representative). Alternatively, you may go online at to get their phone numbers.
    2. Identify yourself as a constituent, and ask to speak with the Health Care Legislative Assistant.
    3. Tell the aide that you are a member of the ICA.
    4. Urge the legislator to apply a balanced approach to deficit reduction that does not sacrifice funding for public health, medical research and training.
    5. Explain why public funding of IC awareness, education and research is important to you.
    6. Ask that they keep you informed of their actions.
    7. Give the aide your contact information, and ask to be informed about the actions the legislator takes in response to your request. Feel free to follow up with the aide at a later date.
Together, we have had success through our advocacy efforts this year. Let’s do it again to stop these cuts!
Thu, 13 Dec 2012 16:57:00 GMT 36a8d845-ebb6-4da6-a53d-4f0b81279981


Congress continues to debate fiscal year 2013 (FY13) funding levels for the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and other public health-related agencies. In this difficult time, all federal programs face possible funding reductions. Reducing funding for these important health programs and agencies would disrupt critical research and result in fewer outreach efforts to educate the public, patients, and healthcare providers about IC.
The Issue
Your House representative must hear from you to ensure that the CDC Interstitial Cystitis Education and Awareness Program and IC research at NIH continue to be funded in FY13. Funding for these programs depends upon the decisions that are being made now. Lawmakers will only demonstrate support for these programs if they hear from you, their constituents.
Take Action
Contact your member of Congress by July 17th and encourage them to support the CDC IC Program and NIH research. You can identify your representative by going to and entering your zip code in upper right hand corner. Select the “GO” button and the name of your representative will appear. Click on a legislator’s name to be directed to their website and find their contact information.
When calling your legislators:
  1. Identify yourself as a constituent and ask to speak with the legislator’s health care legislative assistant. If you receive the voicemail recording of a health staffer, please leave a message, including the priorities listed below and your contact information.
  2. Tell the aide that you are affiliated with the Interstitial Cystitis Association.
  3. Ask that the congressman support the following appropriations priorities in the Labor, Health and Human Services, Education, and Related Agencies Appropriations bill:
    • $660,000 for the Interstitial Cystitis Education and Awareness Program at the Centers for Disease Control and Prevention
    • $32 billion for the National Institutes of Health
  4. Briefly explain why this is important to you.
  5. Give the aide your contact information and ask to be informed about the actions the legislator takes in response to your request.
  6. Phone calls work best, however, please feel free to email your congressman this important information.
Fri, 13 Jul 2012 15:14:00 GMT 7e9b55fe-0590-4ced-a83f-d6394946d9ee
Contact Your Legislators Today Let’s rally! Congress continues to debate fiscal year 2013 (FY13) funding levels for the health-related agencies. In this difficult time, all federal programs face possible funding reductions. Reducing funding for these important health programs and agencies would disrupt critical research and result in fewer outreach efforts to educate the public, patients, and healthcare providers about IC. Take Action!
  • Contact your legislators and encourage them to support funding that helps the IC community. Funding for these programs depends upon the decisions that are being made now. Lawmakers will only demonstrate support for these programs if they hear from you, their constituents.
    • Ask that they ensure that the CDC Interstitial Cystitis Education and Awareness Program continues to be funded.
    • Encourage them to ensure that IC research at NIH continues to be funded in FY13.
  • Go to and enter your zip code in the box on the right side of the page.
    • Select the “GO” button and the names of your senators and representative will appear.
    • Click on a legislator’s name and then select the “contact” tab to find contact information for the office.
  • Review more tips about contacting your legislators.
Fri, 15 Jun 2012 18:15:00 GMT 87660dcd-eb10-401b-a083-435f9e0cb02f
Please call your Senator Today! Tomorrow, September 20, the Senate Labor-HHS-Education Appropriations Subcommittee is scheduled to mark-up its FY12 spending bill. This is the annual bill that funds agencies such as the National Institutes of Health and Centers for Disease Control. Please contact your senators tomorrow morning! Go to and select your state from the drop-down box in the upper right corner. Phone numbers for all senate offices are also listed on Calling works best, but if you prefer to communicate via e-mail, you can do so through
Ask your Senators to help all IC patients be winners by funding IC research and awareness:
  • $660,000 for the IC Education and Awareness program at the Centers for Disease Control and Prevention.
  • $35 billion for the National Institutes of Health, including increased investment in interstitial cystitis research.
Read tips for communicating with Senate offices.
Mon, 19 Sep 2011 21:24:00 GMT 42c26381-dd9f-4fc3-ac8c-6e03834a4163
Please Tell NIH that IC Research is Vital Weigh in on Ideas for NIH Common Fund Programs
The National Institutes of Health (NIH) Common Fund supports exceptionally innovative programs that are inherently high-risk but have the potential for high-payoff by catalyzing research across all of NIH and in the biomedical research community. New ideas for Common Fund programs are identified annually by internal and external scientists and stakeholders. NIH is asking for your input on these ideas to help them shape new programs for 2013. They want to know which ideas you think have the potential to fundamentally change how they think about, support, or do research in a specific field, or to create a new field all together. Provide your input today: The feedback period is open until Wednesday, September 14, 2011. For more information about the NIH Common Fund:
Mon, 12 Sep 2011 14:31:00 GMT 391218fc-b809-4a2a-a3f8-a02339ab3483
IC Advocates: It's Summertime and Congress is Voting FISCAL YEAR 2012 APPROPRIATIONS ACTION ALERT
Contact your member of the House of Representatives TODAY!

Congress is currently negotiating the federal government’s budget for fiscal year 2012! This summer, House of Representatives’ subcommittee is scheduled to review the budget which funds the National Institutes of Health (NIH) and Centers for Disease Control (CDC). The subcommittee is expected to produce a bill that spends significantly less on these programs. Please contact your representative this week and encourage him/her to support the needs of IC patients in this bill.
  • Don’t know who your representative is? Go to and enter your zip code.
  • Calling works best—and phone numbers for all Congressional offices are also listed on
  • If you prefer to communicate via e-mail, you can do so through
Thu, 21 Jul 2011 16:33:00 GMT 419cea99-016e-443e-9d10-6eac01d92f32
This Fourth Demonstrate Your Independence This weekend, the country pauses to remember that on July 4, 1776, the United States adopted the Declaration of Independence. YAY!
However, for so many IC patients, the pain and urinary symptoms do not take a holiday. NAY!
Embrace this fourth by taking an opportunity to let your Congressional leaders know that you need their help in declaring freedom from IC:
  • Go to
  • Send a note to your representative and senators
  • Tell them your IC story
  • Ask them to do three things for you:
    1. Ensure IC research studies continue to be funded at the National Institutes of Health. These are essential to move us closer to a cure and better treatments for interstitial cystitis.
    2. Keep awareness activities conducted by the Center for Disease Control funded. This ensures healthcare providers and the public understand the special needs of people with disabling conditions like IC.
    3. Ask that IC be included in the group of conditions studied in the Department of Defense Peer-Reviewed Medical Research Program
  • Let us know you sent a letter—send a copy to We’ll stop by your representatives’ office in Washington and follow up.

Help ICA keep IC advocacy activities going in Washington. Donate today.

Thu, 30 Jun 2011 14:56:00 GMT d9bdd093-c11c-4c95-bb82-aff8bcf41ce6
Stamp Out IC! The Senate is discussing funding for federal health programs for fiscal year 2011. Urge your Senators to adequately fund IC research and prevention programs. Without progress in research and prevention, the 4 to 12 million Americans with IC will continue to suffer waiting for a cure.

Send your letter NOW!

The Senate votes this week and in coming weeks on bills that impact IC programs.

Go to

Act now—share your IC story. Tell your Senators to maintain health funding in FY2011:

  • Research studies funded at the National Institutes of Health are essential to move us closer to a cure and better treatments for interstitial cystitis.

  • Awareness activities conducted by the Center for Disease Control ensure healthcare providers and the public understand the special needs of people with disabling conditions like IC.

Go to and send your letter today.

Learn more about how to communicate with Congressional offices—check out the ICA Advocacy Toolkit. Thank you for all you're doing to help Stamp Out IC! Keep us in the loop by emailing the ICA at
Fri, 04 Mar 2011 14:37:00 GMT ac37471e-2f1d-4c7c-bdf6-0a88068ee7bf
Help Maintain IC Funding The U.S. House of Representatives voted 235 to 189, early Saturday morning on February 19, to approve an FY11 budget package that cuts over $60 billion in health programs. This legislation reduces funding for the National Institutes of Health by $1.6 billion (cut 5 percent) and CDC by over $1 billion (down 20 percent). In addition, the House adopted nine floor amendments cutting funds for further implementation of the health reform.
The Senate will begin consideration of the FY11 funding package the week of February 28th. Please take a minute to call your local district office and share your IC story. Let them know we need a cure—explain to them how important it is that we fund dedicated IC research and awareness programs.
Keep us in the loop by emailing the ICA at
Thu, 24 Feb 2011 14:30:00 GMT fe951c32-718e-4cce-9f77-4e33e0fb9fd7
Federal funds for IC research and awareness are in danger!
We need your help right now to prevent drastic cuts in this year’s budget.

The cuts in the House version of the current year Fiscal Year 2011 appropriations bill are not backed up by any rational analysis and go way beyond any reasonable deficit reduction plan. They are so deep that they will cripple medical research and public health programs, including those for IC, and training of health professionals.
Tue, 15 Feb 2011 16:25:00 GMT ca22ac5c-d656-4d6d-a8bb-84fe534b983d
Stamp Out IC—Advocacy Visits with Congress @ Capitol Hill Calling All Interstitial Cystitis Advocates: We’ve got a new Congress and lots of new faces to educate about interstitial cystitis (IC)!
In January 2011, the 112th Congress took the reins and with this comes lots of new legislators to educate. Please join us for visits with members of Congress and their staff. Our goal is to meet with these new leaders and help them understand the special needs of IC patients. Your stories will help them better understand how their decisions affect IC patients, healthcare providers, and scientists.
Read More
Thu, 10 Feb 2011 17:00:00 GMT b2469ba8-753d-4acc-b164-f53555008ef8
Institute of Medicine Asks for Patient Input on Pain A call to action from the American Pain Foundation: The Institute of Medicine Committee on Advancing Pain Research, Care, and Education is calling on the pain community to help committee members better understand what it is like to live with pain.
Tell the Institute of Medicine NOW what it's like to live with IC pain! Act now and share your individual experiences with pain and how it affects your life, including:
    • Barriers that have prevented you from receiving effective pain care.
    • Stigmas you have endured as someone struggling with pain.
    • Experiences (positive and negative) you have had when seeking treatment.

Providers are also asked to submit information on:
    • Groups that may be inadequately treated for pain.
    • Clinical experiences in providing pain care, particularly in the primary care setting.

Please submit your comments by February 8, 2011 to the committee here.

Next, share this email with your family members, friends, colleagues and health care providers and ask them to respond. Don’t forget to post this on your Facebook wall or send a tweet to your followers on Twitter.
Thank you for your help — together we continue to conquer pain!
Fri, 04 Feb 2011 17:22:00 GMT ff020d01-f062-4840-b990-fb30a0196b58
Call to Action: NIH Funding—Please Call Your Senators Today! Congress is working to finalize the FY11 federal budget. Passage is a multi-part process. Last week, the House of Representatives passed a “Continuing Resolution” (CR) that funds most departments, agencies and programs of the Federal government at current FY10 levels through the end of FY11 (Sept. 30, 2011).
The Senate has not taken-up the House-passed CR. Instead, Senate Democrats yesterday released an “omnibus” appropriations package for FY11. This legislation contains all 12 unfinished appropriations bills for FY11, including the bill that funds the NIH. The omnibus package contains a $750 million increase for the NIH over FY10, including $50 million for the Cures Acceleration Network, a new NIH program established to speed the translation of basic biomedical research findings into better clinical treatments and cures.
In the next few days, Democratic leaders will attempt to pass the omnibus bill on the Senate floor. It is unclear at this time if they will have the votes to secure passage. If the bill fails to advance, then the Senate will likely approve the House-passed CR, which would result in level funding for the NIH in FY11. If the Senate does pass the omnibus bill, then it will go to the House for consideration. Passage of the omnibus bill is a preferable outcome for the interstitial cystitis community as it provides a $750 million increase in funding for much needed biomedical research.
Please contact your two senators today and ask them to support an increase of $750 million for the NIH as called for in the Senate omnibus appropriations bill. Call the Capitol Switchboard at (202) 224-3121 and they can connect you to the appropriate office.
Tips for calling senate offices:
    1. Be prepared to leave a brief (60-90 second) voicemail explaining that you are calling in support of increased funding for the National Institutes of Health in FY11.
    2. Identify yourself as a constituent and a member of the Interstitial Cystitis Association and ask to speak with the senator’s healthcare legislative assistant.
    3. When connected to the health aide (or his/her voicemail), explain that hope for a better future for patients and families living with IC rests heavily on biomedical research support by the NIH.
    4. Ask that the senator to support an increase of $750 million (2.4%) for the NIH in FY11 as called for in the Senate omnibus appropriations bill.
    5. Give the aide your contact information and ask to be kept informed of the senator’s action on this important issue.
    6. Calling works best, but if you would prefer, you may also e-mail senate offices.
You may find information for your senators at by entering your zip code in the box on the right-hand side of the page.
Thu, 16 Dec 2010 18:54:00 GMT b423b67e-6cee-48b3-aeaf-c37d93f6df4c
Did IC Get in the Way of Your Summer? If So, Tell Congress & NIH If IC symptoms impacted your plans this summer, you are not alone. Nearly 400 patients shared with the Interstitial Cystitis Association that their IC affected summertime activities. About 20% of this group did not make plans for the summer because of their IC symptoms. The results are not surprising and support the findings of other studies which concluded that the impact of IC is as severe as rheumatoid arthritis and end-stage renal disease. Additional research found that the impact of IC on quality of life was more severe than endometriosis, vulvodynia, or overactive bladder.
We need to continually remind Congress and the leadership of the National Institutes of Health (NIH) about how debilitating IC can be. If IC got in the way of your summer plans, tell your story to Congress and the NIH director. Take a few minutes and write down how IC affected your life. Email your story to your Washington representatives and the leadership of the NIH. Remind them that we need to find answers for people with IC today: We need to find better treatments and a cure, we need doctors and healthcare providers who understand the special needs of IC patients. We need their commitment to help people with IC. Join the movement - take action - send your emails today:
If you want to share a copy of your emails with the ICA, please send them to Thanks for being an IC advocate!
Wed, 25 Aug 2010 17:19:00 GMT 4a519743-702a-41ae-9382-7197d6deac71
Save Federal Funding for IC—Contact Both of Your Senators Today We need your help to protect critical federal programs benefiting the IC community.
Continued funding is in serious jeopardy. The U.S. Senate is set to mark up its fiscal year 2011 spending bill. This bill funds NIH research studies and the CDC IC Education and Awareness Program.
Read More

Tue, 20 Jul 2010 22:24:43 GMT 441b5886-c554-4c3b-921c-db17fa4dea48
Urge Your Legislator to Ensure IC-Dedicated Federal Funding
  • Overall Investment in NIH: The ICA supports aggressive overall funding for NIH at a level of $35 billion for FY11. This funding level will help preserve the initial investment in healthcare innovation and biomedical careers established in the American Recovery and Reinvestment Act of 2009 (ARRA). Strengthening and preserving our nation’s biomedical research enterprise through NIH fosters economic growth and sustains the innovations that enhance all of our health and well-being.

  • IC Education and Awareness Program: The ICA urges Congress to restore funding for the continuation of the IC Education and Awareness program at the CDC at $660,000 for FY11. The FY11 President’s budget request recommends elimination of this program. The IC program at the CDC promotes public awareness of IC through education for health care providers and the general public. Although IC affects at least one in every 77 Americans, many healthcare providers are not familiar with its symptoms or presentation. As a diagnosis of exclusion, physicians must be aware of IC in order for patients to receive timely and accurate diagnosis.

Fri, 09 Jul 2010 12:50:00 GMT 15f2a80c-74d4-4659-be14-455afef4f48f
Action Alert: FDA Proposed Opioid REMS On June 29, the FDA released a 374-page draft plan for Risk Evaluation and Mitigation Strategies (REMS) for opioids such as oxycodone, oxymorphone, hydromorphone, and methadone. The goal of the REMS is to reduce misuse of these medicines, while ensuring access to patients who need these pain medications. The draft plan will be discussed at an upcoming advisory board meeting later this month.
The ICA is working closely with many partners to ensure that federal regulations allow adequate access for pain patients. We are grateful to all of those in the IC community who helped officials understand the vital need for access to these medicines by submitting comments to the FDA last spring. You were not alone-2,170 comments were received by the FDA about the need for less restrictive guidelines.
The FDA continues to seek input from patients, healthcare providers, pharmacists, and industry stakeholders about this proposed regulation. The comment period runs through October 19, 2010.
Read a great summary of the draft plan
Download all 374 pages!
Learn how to submit a comment

Thu, 08 Jul 2010 15:03:00 GMT d2d255b0-2eba-4500-8a55-8a60051bf0bf
Contact Your Congresspersons TODAY to Save Federal Funding for IC Research We need your help to protect a critical federal program benefiting the IC patient community.
For the past 5 years, Congress has provided funding to the Centers for Disease Control and Prevention (CDC) for an IC Education and Awareness Program. This unique program promotes public awareness of IC through education for health care providers and the general public. The program focuses on providing targeted information about IC research, diagnosis, treatment, and self-help strategies through podcasts, print materials, and website content, as well as social networking, new and traditional media. By increasing communication between patients and their families, IC advocates, and healthcare providers including physicians, researchers, and public health specialists, the program develops enhanced communication channels for information sharing. It also promotes continued partnership between government agencies, voluntary patient organizations and non-profits, and other strategic partners.
Healthcare provider and patient education about IC is essential to ensure patients receive accurate and timely diagnosis and treatment. Unfortunately, continued funding for this program is in serious jeopardy, as President Obama’s fiscal year 2011 budget request recommends its elimination. Although the President’s budget request puts the IC Education and Awareness program in danger, Congress will ultimately decide whether or not to continue funding the program. The Interstitial Cystitis Association (ICA) urges all IC advocates to take action today by contacting your representative and senators to encourage them to fully fund the IC Education and Awareness program at the CDC!!!

Please send this message to your representative and two senators:

You can find your representative and senators by going to and entering your zip code
Dear ______________: As a constituent and patient living with interstitial cystitis (IC), I am writing to urge you to restore federal funding for a critical IC program in the FY11 Labor-HHS-Education Appropriations Bill. IC is a painful condition that consists of recurring pressure or discomfort in the bladder and pelvic region, and is often associated with urinary frequency and urgency. The cause of IC is unknown. Diagnosis is made only after excluding other urinary/bladder conditions, which causes one or more years delay between onset of symptoms and treatment. When healthcare providers are not properly educated about IC, patients may suffer for years before receiving an accurate diagnosis and appropriate treatment. For the past 5 years, Congress has provided funding to the Centers for Disease Control and Prevention (CDC) to promote IC education and awareness. The CDC program supports much-needed healthcare provider and patient education, as well as information sharing between patients, healthcare providers, and researchers. Healthcare provider and patient education is essential to ensure that patients receive accurate and timely diagnosis and treatment. Unfortunately, President Obama’s FY11 budget request recommends the elimination of this program. I urge you to support me and other IC patients by asking the Labor-HHS-Appropriations Subcommittee to provide $660,000 for IC Education and Awareness Program in their FY11 bill (level funded from FY11). Your assistance is greatly needed!
Thank you for your consideration of this request. Please advise me of your actions at your earliest convenience.
Your Name
Your Address
Sun, 18 Apr 2010 17:04:00 GMT ca467b4c-b998-4dbc-977f-b040882064f9
Fill up Inboxes on Capitol Hill!
The ICA Capitol Hill Walk is rapidly approaching and even if you can’t travel to Washington for the event, you can still be involved and help to educate Congress about IC! On Thursday, March 25 fill up the inboxes of your Congressional representatives with messages about IC! Tell them what IC is, how it has affected you, and urge them to ensure that the CDC continues to receive funding to raise awareness about IC. Visit the “How to be an Advocate” section of the website to learn how to contact your representatives, download a sample letter, and review statistics about the number of people in your state with IC. Together we will Conquer IC and Change Lives!
Thu, 18 Mar 2010 16:06:00 GMT f61a58dd-4599-4522-b83b-b7f1f61c9866
5 Minutes for IC Awareness: Give the ICA a Thumbs up on
Raise awareness for IC this week by sharing your positive firsthand experience with the ICA on! lets potential donors learn more about an organization before they donate. The ICA relies on donations to help cover the cost of advocacy, research funding, and education programs. Tell them and others about the ICA Update,, the ICA e-Newswire, patient support and information through, and all of our other programs.
Go to, search on Interstitial Cystitis Association, click on the ICA name in the results and, when the ICA's page opens, click on the “Write a Review” button on the left. If you’d like help with writing or posting your review, contact the ICA at
Thu, 04 Mar 2010 17:09:00 GMT 07096892-df20-4ee7-814f-248fbbfb7156
Call to Action: Protect NIH IC Research Funds In recent years the amount of money that the NIH sets aside specifically for IC research has been dropping. Help protect the funding that is currently marked for IC research and help reverse this trend by letting the NIH know how important funding for IC research is! Send an email to the NIH director and the NIDDK director reinforcing the need to dedicate funds to IC-specific research at NIH. Let them know how IC affects your life and ask them to reconfirm their commitment to IC research. Send your emails to and if you’d like to share your comments with the ICA, email a copy to us at or post them on the ICA Facebook page.
Thu, 04 Feb 2010 17:11:00 GMT ce77ea14-9de0-4b46-ad44-545b9a048c5c
Access to Opioids: The FDA Needs to Hear From You! Public Comment Sought by October 19, 2010 The FDA has reopened the public comment period for developing Risk Evaluation and Mitigation Strategies (REMS) that would regulate opioid drug availability. Comments will be accepted until October 19, 2010. Many drugs that are routinely prescribed for IC would be affected by these regulations and access to these drugs could be severely limited.
You have until October 19, 2010 to submit comments to the FDA: Title: “Risk Evaluation and Mitigation Strategies for Certain Opioid Drugs; Notice of Public Meeting; Reopening of Comment Period.” Docket ID#: FDA-2009-N-0143.

Submit written comments to: Division of Dockets Management (HFA-305); Food and Drug Administration; 5630 Fishers Lane, rm. 1061; Rockville, MD 20852.

Submit electronic comments by going to and clicking on the “Submit Comment” tab.
For further information call 301-796-3448; or e-mail:
Mon, 30 Nov 2009 17:13:00 GMT 9e79fca1-25ce-475c-9c63-7fb24ebc0462

Tuesday, June 18, 2013


As an Interstitial Cystitis patient, learning to live with chronic pain and illness is a daily challenge that those of us with this disease face each and every single day we wake up - that is if we even were able to sleep the night before! As we all know, IC patients are constantly fighting a never ending battle for better treatments, awareness, research funding and ANY relief from our pain we can find. IT. NEVER. ENDS. For those of us with IC, this is a daily battle! Once we receive our diagnosis, this is our life to learn to live with from now on! 

I'm sure we've all either heard or read about the Angelina Jolie op ed in the New York Times about her decision to have a prophylactic double mastectomy because she is positive for the BRCA1 gene which meant she had an 87% risk of developing breast cancer. Here's a link to the original op ed piece.

Ever since that article appeared in the paper, there has been an outpouring of media attention on her medical decision to have this radical procedure. There has been much talk of how brave she was for doing it and for coming forward and talking about it. A media frenzy would be, in my opinion, putting it mildly to describe the response to what she did. This has been getting even more coverage in the past two days since breast cancer survivor Melissa Etheridge came out making comments about calling Ms. Jolie "brave" for her decision to have this radical procedure. Ms. Etheridge took issue with calling Ms. Jolie's decision "brave". I think I agree with Melissa Etheridge.

I do not wish to diminish her medical decision; I am 100% against COMPARING illnesses and saying things like "mine is worse than yours" and I am always in favor of taking control of our own health by doing what we feel we must do is right for our own situation. I am confident it was not easy, as she writes, the surgeries painful and frankly ANY woman who has to undergo a mastectomy with reconstruction, and often radiation and chemo would be, in my opinion, brave. I do not, however, think she is braver-ER than any woman that has to go through the threat of breast cancer let alone getting it and battling it and hoping to beat it. I have friends that have battled - and are winning - the fight against breast cancer. Breast cancer is in my family. My Mother's sister died due to breast cancer and I had a very close call myself, having an egg sized lump removed from my left breast which, luckily was benign.  After my surgery to have it removed, my doctor at the time told me then that he was not expecting a good outcome. He never worried me before surgery, but went about getting me into the O.R. as quickly as possible and removing this rather large lump. He was an excellent surgeon and because the lump was so large, I required some reconstruction. He told me if he did not do the reconstruction using surrounding tissue, due to the size of the lump, I would have been left with a "dent" in my breast. He told me that not all doctors bothered with doing that at the time, as it took longer in the O.R. This was 10 years ago and so much has changed since then. Just read Angelina Jolie's op ed to understand what can be accomplished for women today who need to have a mastectomy. One of my best friends has had a double mastectomy with reconstruction, but she was not as lucky as Angelina Jolie and her reconstruction was unsuccessful. So it is not as simple and easy as she makes it out to be.

But with all this talk about how brave Ms. Jolie has been, I have been feeling somewhat frustrated because even though she made a difficult decision, she has been assured that all will be well for her. Her chances of getting breast cancer are now as low as 5% or less. I'd take those odds.  She wrote about how she can tell her children not to worry about her health. She wrote about how supportive Brad Pitt has been to her through her journey; she is lucky to have that.

She wrote about how "Breast cancer alone kills some 458,000 people each year, according to the World Health Organization."

But here's the thing that I, as an IC patient wants to point out. Contrast that with the the 4-12 MILLION men, women and children suffering every single day with Interstitial Cystitis vs 458,000. This is not to try to "rank" diseases. But merely to point out that those of us suffering and struggling to find relief and good medical care for our IC far outnumber those battling breast cancer. 

But where is IC's "Angelina Jolie"  that will write about what having to LIVE with IC every day is like? Who among us is even given the opportunity to publish an article in the New York Times about how to LIVE with this chronic pain? Who is our advocate telling the story of how often IC patients are not able to find good treatments, struggling to pay for what treatments there are; where's the conversation about the depression of living with chronic illness and pain and facing losing your job, or making the decision to go on Disability because we can't have surgery and nine weeks later show up on the red carpet in a designer gown telling the world how we were able to insure our future health?

I believe so strongly that each IC patient that is fighting this never ending battle, trying to find relief, getting up each and every day and going about our business is BRAVE! We are warriors! Because right now, there is no known cause for IC! No cure for IC! Insufficient treatments for IC! Yet we get up, many taking care of their families while battling their IC and pain. Learning to LIVE with IC is BRAVE! 

As I stated above, this is not about making this a contest or diminishing what women dealing with breast cancer are dealing with. But unlike Ms. Jolie, who can now move forward with her life because she was able to take advantage of expensive progressive treatment options and afford the expensive ($3,000) test to help her decide how to treat herself, those of us with IC have to continue to live with our disease for the rest of our lives - unless there is a major breakthrough in research very soon!

Most IC patients do not have these options. Many don't have a supportive spouse who can afford to take off work whenever they want to be by their wife's side during surgeries and countless doctor appointments. Even if they do have a supportive spouse who would gladly do so, most are unable because they can't take the time off from work! As Ms. Jolie writes, it was 3 months of surgeries and she's done. How many of us wish our treatment took 3 months and we'd be all done? I've endured 13 surgeries in 12 years since being diagnosed with IC and I know the millions of IC patients suffering every day have similar stories to tell.

To me, this is the epitome of bravery. Learning to cope with never ending pain and chronic disease is, to me, the bravest thing any of us do. And most of us don't give ourselves enough credit for it! We should! Never giving up; researching everything we can to find good treatment options for ourselves. Learning to be our own best advocates. Supporting the ICA who fights tirelessly for IC funding, awareness and medical and patient education. These people deserve to be acknowledged for their Bravery in my opinion!

But nobody is writing about IC. We don't have an "A-list" celebrity that has IC that will come forward and speak out about it. We don't have any high profile doctors, celebrities or health organizations getting out there and raising awareness like Ms. Jolie and all the female celebrities who have spoken out about their battle with breast cancer. To see all these people speaking out it would lead you to believe there are are more women fighting breast cancer than any other health condition and that would be wrong. Heart disease is the number one killer of women in this country but it now has the "Go Red" campaign with lots of celebrities joining that bandwagon to spread the word. About 600,000 people die of heart disease in the United States every year–that’s 1 in every 4 deaths. But heart disease IS preventable! These numbers don't have to be this high; medicine KNOWS how to prevent heart disease. That mystery has been unlocked.

So, again, compare that number to the millions suffering on a daily basis with Interstitial Cystitis. We don't know what causes it. We don't have a cure. And we don't have sufficient treatments. We number in the millions and we don't have the money pouring in for research like breast cancer and heart disease, yet we far outnumber people fighting those diseases. The ICA was on Capitol Hill last week lobbying Congress to restore research funding to the NIH for IC research! But compared to the money pouring in for breast cancer research, we are the "ugly stepchild" by comparison with the ICA fighting tirelessly (thank you ICA) to get what research funding crumbs we can to help unlock the mystery that is IC!

So, here's to every single IC patient out there that is fighting their battle with IC and associated conditions, not knowing when or how or if we will ever see the level of relief that will give us the quality of life Ms. Jolie now has. You are my IC Warriors and you are BRAVE!