Saturday, November 30, 2013


If you've been reading anything I write lately, you probably know I've been fighting a super nasty case of bronchitis (we assume). I am still not well and coughing constantly and actually feel worse this weekend that at anytime over the nearly 3 weeks since I started coughing.

I don't have pneumonia - the chest X-Ray was negative - and I have finished all the meds my doctor gave me so one would think I would be improving by now. But it is not to be. Nearly ruined my Thanksgiving but I was able to enjoy some nice family time.

I am sapped of every single ounce of whatever energy I might have had even before getting sick. I am a blob on my comfy chair with my blanket and heating pad. My sainted mother has been doing all she can to help me. I guess this will just have to run its course. Might call the doctor on Monday if I'm still this bad. We'll see. He told me last time we spoke that we had exhausted all the treatment options for this and what might be left to try, I can't take. 

So here I am. Too tired to turn my brain on and write a serious Blog. I'm "writing in" sick today. Guess that's where I've been for the past two days already.

I hope everyone else is doing better than I am and taking it easy this Thanksgiving weekend as we kick off the holiday season.

Thanks for all the nice messages and well wishes so many of you have been sending me. They mean so much to me.

Nothing's Changed!!

Thursday, November 28, 2013


On this last Thursday in November we all sit down with family, friends and loved ones to mark Thanksgiving Day. It is a day of celebration, traditions, family, but mostly a day to remember that for which we are grateful.

When you live with a chronic, incurable, painful and difficult to treat disease it’s often challenging to dig through the pile to find the gratitude. But if we stop, take a moment and give it some serious thought I know there are things we all have that we can and should be thankful for today.

So if you are celebrating, in whatever way you and your family celebrates, stop and take a deep breath, close your eyes and think about what you are most thankful for. Even through all the hard times, what is it you are thankful you have in your life?

This is what I am Thankful for on this Thanksgiving Day!

My IC “Family” - Each of you who I have met along this journey has had a positive impact on me and learning to live with my IC. You are all a source of encouragement, willingness to share and help others and have kind and generous spirits even through all your own struggles. So often thinking of others before yourself, you all go out of your way to support me and my Awareness efforts as well as those of so many other IC patients. From all the lovely and kind messages you all send me, to nominating me for a WEGO Health Activist Award, to following my Blog and all I do on Social Media - you all lift me and my spirits every day as well as those of your fellow IC "family"!

The ICA - Well, where would any of us be without the hard working, dedicated staff that makes up the ICA. The information they provide to us via the ICA website, Facebook page, Twitter, Pinterest - you name it - is so valuable I cannot put a price on it. I talk to people all the time who tell me they were lost until they found the ICA and all the excellent information they provide. They talk to thousands of IC patients on the phone every single day; lobby Congress for increased research funding and work tirelessly to help Raise #ICAwareness for us. Thank you ICA!

My Support Group - Well, simply stated, this group of men and women are a never ending source of Support and encouragement and a demonstration that together we CAN get through this! I will forever be grateful for my wonderful Support Group Leader who decided one day she wanted to start a group and put that flyer up in my doctor’s office. It has changed my life for the better forever!

The Love of Dear Friends - You all know who you are. The friends that have stuck by me through thick and thin. The friends who go out of their way to stay in touch with me, call me, visit me and have adjusted THEIR lives to accommodate my special needs mean more to me than words can possibly say. The list is shorter than it used to be; that’s OK. For me it’s about QUALITY, not quantity. And the friends I have are so dear and supportive and never have given up on me. My love and gratitude for each of them means so much!

And last but NOT least - MY FAMILY - I am blessed and thankful for the most wonderful, loving and supportive family. I could not get through this without each and every single one of them! They are a constant source of support, encouragement, patience and love!  And of course, to say I am thankful for my “sainted mother” is an understatement of epic proportions! Without all my Mom does for me, I have no idea where I would be! She is the captain of my ship, guiding me and helping me navigate each and every health challenge that comes my way! I love you all!

These are the things for which I am most Thankful on this very special day of the year - Thanksgiving Day!

I hope you’ll all take a few moments to reflect on what in your life you are thankful for. It’s there if you just look for it. 

"Thanksgiving Song" - Mary Chapin Carpenter

Wednesday, November 27, 2013


Many of you may be aware that an Extremely Generous Anonymous Donor recently presented the ICA with a $50,000 Matching Challenge Grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization was matched by this donor. Research projects funded with this grant will further enhance our quest for answers and focus on identifying the causes of IC and exploring broadly applicable treatments.

Well, the response was so overwhelming, and thanks to everyone's generous support, not only did we hit that $50,000 mark, the donor has generously RAISED the matching grant amount up to $75,000!!
This is such awesome and exciting news!

So often we all talk about how much we desperately need research funding and now, look what has been accomplished! First our Anonymous Donor offers the ICA the $50,000 to create the Matching Challenge Grant. Then this creates such a huge response among the IC Community that the goal is reached and now the challenge has been Raised!

You can read more about the Matching Challenge Grant on the ICA website and I'll post some links here.

So, as we approach the season of Giving, consider asking friends and family to help reach the New $75,000 goal by making a donation in your name to the Matching Grant Fund! This is what I do for my Birthday and Christmas every year. I ask friends and family to NOT buy me any presents but instead make a donation to the ICA! With this wonderful opportunity to raise so much money for IC research, the incentive is even greater to do so!

Let's do all we can to help meet the challenge and hit this amazing New Goal and double the money going to IC research! Every penny counts and no donation is too small! 

Monday, November 25, 2013


What is it about being diagnosed with a chronic disease that makes us all think we have to be stoic, not let anyone know that we're in pain and suffering and that we are still a "superwoman"? What is it that seems to make us think we can't tell our loved ones if we're having a bad day? This does seem to be something that manifests more in women than men, but if the shoe fits then this is for all who feel this way. I talk to so many patients who are always telling me how guilty they feel that they can't do what they used to; that they feel they are not a good mother or daughter or wife - you name it - but I find a lot the women I talk to have these feelings and look upon becoming sick with IC as some sort of personal failing.

Nothing could be further from the truth! If your spouse, parent, sibling or other loved one had been the one diagnosed with a chronic, painful, incurable disease would you think less of them? Probably not. I think most of us would want to help support that person, ask what we could do to help, let them know we are there for them. Offer to do whatever we could.

But for some reason, so many of us seem to take our diagnosis, and how it impacts out lives and changes what we can or cannot do and look upon ourselves as flawed and somehow weak and beat ourselves up because we didn't get the house cleaned to the perfection we used to, or we can't host Thanksgiving like we once did.

It's a process, but I think it's important to say that getting sick isn't a personality flaw! You are NOT weak because you can't do what you once could. It's OK to experience feelings of loss over the changes we have to make to accommodate our illness. But working through those feelings is important and leaning on our loved ones is something we should walk toward not away from.

I realize not everyone has the perfect, supportive friends and even family. But seek the people who DO support you. Ask for their help if you need it. Think about why you think being sick makes you "less than" you were before. 

I guarantee you, no one ever lay on their death bed wishing they had spent more time cleaning their house. But they do wish they had spent more time with those they love. Even if you can't run around the yard with your children anymore, spending time with them is what they will remember. Just being with you; doing quiet activities is important. They will remember you were there for them when they are adults. And, in the process, I believe you will have taught your children to be caring, empathetic adults who will be there for those they love because you taught them how to do this as they grew up.

Hiding how much pain you are in from family and friends isn't a sign of strength and serves no purpose. You don't have to make a huge deal out of not feeling good. But let's say you are at a party or family gathering (those will be popping up starting this week). If you are asked how you are feeling, simply state you are not feeling well but you prefer not to dwell on it. Ask if that person is willing to go sit with you in a comfortable place and visit with you and distract you from your discomfort; tell them this will lift your spirits. How many people would actually say No to a request like that? Then re-direct the conversation to them, their family, what they've been up to. If they want to ask more about your IC, tell them what they want to know but keep it simple and don't monopolize the conversation with it. I always give myself a cut off point before I pivot the conversation back to the other person.

I find this works well for helping to lift my spirits, as I mentioned. I love hearing about my friends, what they are doing, their work, family etc. The ones who have stuck by me are the ones that truly understand my situation and always ask about me. I tell them, but don't dwell and move the conversation along after bringing them up to date.

It's not weak to admit you are in pain. In fact I think it takes a lot of bravery to show others that we do need help, love and support to get us through our struggles. No one should ever feel guilty for getting sick. So as we approach this Thanksgiving and the upcoming holiday season, I want to encourage everyone to change their expectations of themselves. Don't feel you have to do what you've always done. If you need to change the plan, whatever that may be, to accommodate your physical needs, then do it. Ask for the support you need. Let family know you want to BE with them; that's what we want most. Just time with those we love. It's not about being Martha Stewart. It's about spending time with loved ones and not being afraid to ask for help when we need it.

You are not weak if you admit you are in pain. You are you. You are still the person your family loved before and that hasn't changed! I think living with chronic pain is brave and every single one of us needs to give ourselves more credit than we do! We are stronger than we know and asking for help doesn't make us weak!

Sunday, November 24, 2013


I know Sunday is always my day for an Inspirational Quote, but I really could use one myself today. If you follow me, then you know that I have been fighting a super nasty case of bronchitis for two weeks now. It just makes everything so much worse and my bladder does not appreciate all the coughing and wheezing, that's for sure. It's been an added struggle on top of all my usual challenges that I really could have done without. 

So, I'm taking my own advice and putting up my usual Sunday Inspirational Quote and will work to take it to heart. 

"Roar" - Katy Perry

Friday, November 22, 2013


Many of us struggle for so long with our IC, working so hard to keep working. But for some of us, it just becomes too hard and we are faced with the very difficult decision to file for Disability. I am on Disability due to my IC and associated conditions and here's what I know about going through the process.

If you are looking for support because you want to remain working but need a letter from your doctor to help you request a "Reasonable Accommodation" at work, that falls under the Americans with Disabilities Act and the burden of proof is NOT the same as with proving Disability for SSDI. See this link from the ICA website on Talking with Your Employer About IC. As you will read on this page: Typical accommodations specific to interstitial cystitis are detailed on the JAN site. You may want to print the page about accommodations for bladder impairments and share this resource with your employer.

I began my process by going on Short Term Disability through my employer.  Then when I wasn’t able to return to work, my company also offered Long Term Disability which I applied for as well. It was a challenging process and they also force you to apply for Social Security Disability because if you get approved for SSDI, the private carrier can reduce what they pay you by what you are getting from SSDI. KNOW what benefits you have at work before you do anything. I have spoken to many patients who just quit their jobs and discovered too late they had these benefits. If you do have these benefits, this is where you want to start.

One thing to know is that SSI (Supplemental Security Income) is NOT the same as SSDI and if you have ANY money, you won’t get SSI. Often when calling a disability attorney’s office they ask how much you make and assume you want SSI; this happened to me 4 times! It is also part of the process of applying for SSDI; Social Security has streamlined the process as many who apply for SSDI also do qualify for SSI so they just made it part of the process. I had to answer all the questions about SSI but knew I would be denied for that part and my consultant told me to about it and not to confuse it with being denied for SSDI. I had money in the bank from the sale of my house so that automatically disqualified me for SSI. But one has nothing to do with the other and you can still proceed to file for SSDI; your financial resources have ZERO impact on whether you will qualify for SSDI or not! 

You DO have to have worked for a long enough period of time to have earned enough of what are called “Work Credits”. If you do not have enough Work Credits, then no, you won’t qualify for SSDI.

First, the Social Security Administration (SSA) has what is called a "Listing of Impairments" which lists a long list of diseases. If the disease is in the Listing of Impairments, then it is very likely a person would be approved for Social Security Disability (SSDI). IC is NOT in the Listing of Impairments. HOWEVER, due to the dedicated work of the ICA, back in 2002, the Social Security Administration issued what is called a "Policy Interpretation Ruling on IC". The 2002 Social Security Policy Interpretation Ruling on IC recognizes IC as a condition that CAN be a basis for a disability finding, and it provides guidelines for the agency’s evaluation of IC claims.

Here is a link to the Policy Interpretation Ruling on IC for you.  Print this out. It is vital to applying to SSDI; not everyone knows about this and it can be very helpful when filing a claim.

Yes, as many will report, it can be very challenging to get approval for Social Security disability, not just for IC patients, but don't let that stop you. It is your job to prove you are disabled. This is very frustrating for so many IC patients, so I understand what everyone is dealing with. I was denied on my first claim and we filed an appeal and I was lucky enough to be approved after one appeal. I had my entire medical file since being diagnosed 12 years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal. If you are just starting out and need to file your initial SSDI claim, know that you can do it online and do NOT have to go to the local Social Security Administrative (SSA) offices and stand in line. It's on the web and you can fill out the paperwork right online.

You DO need to be able to demonstrate to Social Security HOW your illness(es) prevent you from doing ANY work at all. Of course, if you have excellent medical documentation with multiple problems that impact you, then that can help make your case, though it's no guarantee. Your doctor(s) support can bey very important in going through this process. My doctor wrote an amazing letter of support as did my psychologist. These are key, so having a letter or letters of support from your doctor(s) should be something you discuss with your doctors as you prepare for the process. So, ask your doctor(s) about helping you with this. I strongly recommend you purchase the ICA's Personalized Disability Packet, which includes a general letter explaining what IC is and why someone should be considered disabled because of IC.

If your doctor will write a letter that can be very helpful. One of the items in the Personalized Disability Packet includes a sample letter in the workbook and it is very specific as to how it should be worded. In addition, the ICA's Introductory Disability Packet can help you if you are just getting started in the process, so that is another item worth purchasing. If you are an ICA Member you can purchase all items at 50% discount. This is especially important if you need to Appeal a denial or are going to court for a hearing. The Personalized Disability Packet can be very helpful for Appeals!

It is very important for you to include any and all overlapping conditions related to your IC; i.e. anxiety/depression as a result of your medical conditions, sleep disorder, vulvodynia if you have it, fibromyalgia if you have it; your bladder issues etc. You get the point. You need to describe HOW the disabling impact all these conditions has brought you the point of not being able to work. Explain how your urinary urgency, frequency, high level of pain and discomfort for sitting, standing, physical exertion, physical and mental fatigue impact your ability for sustained function and performance for ANY job on a short or long term basis. You need to have medical evidence that the side effects of your medication(s) are significant and not only prevent you from doing the job you had, but also from doing ANY job and why if this is an issue for you.

When making your case you need to ask the question "What employer, with full knowledge of your medical condition(s) would hire you given your physical limitations? With the diagnosis you have of IC and any other complicating medical conditions, what would define a reasonable accommodation by a prospective employer? Explain that sitting, standing, concentration, motor skills are all affected by the extent of your medical condition(s) as well as side effects of your medication, that are supported (or need to be) by your medical records that you provide.

In addition, if you are appealing or waiting for a court hearing that is taking forever, you should contact your U.S. Congressional Representative's office (LOCAL office, NOT DC office) and ask to speak with someone in Constituent Services. Explain that your SSDI case seems to be taking a very long time, how long you've been waiting etc. Often they can help push it along in the process. They can't help you get approval, but they CAN help get it through the system faster.

Also, if you are in dire straits and need financial assistance or help with medical care, you can ask your Congressional Representative what services are available in your community to help you. Do not hesitate to call your Representative; this is what you elected them for and they can often guide you toward assistance programs in your area. Also, 

If you file for SSDI and get denied, then you definitely need an attorney or a non-attorney disability claims representative to help you with your appeal. You do not have to pay them anything until or unless they win your case; they get paid out of whatever settlement you receive from Social Security.

There are no guarantees. It is a challenging process and everyone has a different story of how hard it has been for them. Many are still fighting. While some like me, did have to Appeal once but was then approved. Yet others have been approved on the first go around. It is not a level playing field and you need to go in prepared for a fight. But if you are struggling and feel this is the right decision for you, then I urge you to never give up, go in prepared and educated and backed up with as much documentation and medical support you can muster!

Wednesday, November 20, 2013


Yesterday I received a Tweet informing me that I had been nominated for one of the WEGO Health Activist Awards!

I was so surprised and excited and couldn't wait to find out more! I clicked on the link provided and was directed to the WEGO Health site where I had to set up my Nomination Profile. I did this and, as most of you know already, I started spreading the word asking for support.

It sounds so corny, but it's really true - I am honored that I was nominated. Often here in cyberspace we are not really sure how much of an impact we are having in what we do; my Facebook, Twitter, YouTube, Blogging, Pinterest efforts - I really am never quite sure how many people are seeing them or if I am having an impact. To have someone take the time to nominate me made me feel like I am making a difference and people are paying attention. I was so touched and appreciative.

I know I have reached out to many of you to go to the website to my Nomination Profile and Endorse me. But you can do more to help me. If you scroll down a little bit, you'll see a link that says "Add Your Nomination". If anyone feels that my efforts are deserving, it would mean the world to me if you would not only Endorse me, but also add your own Nomination. It doesn't take long at all (some family members have done it and it takes less than a minute if you know what you want to say). 

Here is the link to my WEGO Health Activist Awards Nomination Profile where you can add your own Nomination and Endorse me. I hope some who follow me will take a few moments to do this; it truly would mean the world to me.

Whether you take the time to Nominate or Endorse me, I still want to say a big THANK YOU to all who continue to encourage and support my IC Advocacy efforts. Without all of you supporting me, I could not do what I do. 

Tuesday, November 19, 2013


Elizabeth, who was recently an IC Hero and got The Doctors TV show to have her on the show and cover IC, posted some thoughts on her Mommyland FB page from earlier this year about the struggle of living in pain and often the despair and loneliness that comes along with it. This inspired me to write about my feelings on this as well. 

When I was first diagnosed I had no idea where I would end up or how bad things would get. I Blogged about this recently (here's a link if you wish to read the Blog post):

Slowly, as my condition worsened, I found myself struggling as Elizabeth and others talk about. Spending all my time researching, looking for answers, going to doctors, trying treatments. Crying, because as time went on, I couldn't believe this was to be my life. I cried in my IC doctor's office so many times I lost count but he has never lost his patience! Everything or every setback was a catastrophe; there was nothing positive. I was obsessed with keeping my voiding diaries; obsessed with every little symptom and tracking every single thing every single day. Every good day, if there was one, I reacted in an overly positive way. Every setback, and there were many, was the end of the world. The constant emotional ups and downs were taking their toll. I was depressed, as many IC patients find themselves as they begin to fight this battle, and felt like I was stuck in this hole I couldn’t get out of. 

Yet one thing that was always lurking inside me, that I couldn't find on my own, but somehow knew was there, was that I didn't want to feel like this. I wanted out of this hole. I didn't want to be that person that could do nothing but talk about my IC and how crappy I felt. I didn't want to be the person that thought someone telling me I looked good was an insult (do I really want someone telling me I look as crappy as I feel?). But how to change this obsessed, depressed path I was on and get out of this hole? 

Well, the it took several things all coming together at the same time and one stroke of good luck to change things for me. I knew deep inside that I didn’t want to be this way, but didn't know how to dig myself out of the hole I found myself in. Until that fateful day that I was sitting in the exam room at my urogynecologist's office and I saw a new flyer taped to the wall. Someone was starting an IC Support Group. Now, I've never been the type to join things like this. I was always shy and not good at contacting people I didn't know, but this flyer reached a place inside me and struck a chord. I asked the nurse about it. She told me it was another patient of my doctor's; that she had IC and wanted to start a Support Group. She offered me a flyer to take with me and it changed my life forever! This was so out of character for me, but this is what being stuck in the hole will do; if you think someone can show you the way out, you'll reach up and take their hand. I called her and left a message. She called me back very soon and I discovered I was the very first person to call her. She invited me to have lunch and I agreed. We hit it off immediately and I was able to talk comfortably with someone I had never met before about my struggles with IC. She was so kind, warm, caring and we shared this thing in common. Would I help her get the Support Group started? To my surprise, I said yes. Now let's be clear; she did the "heavy lifting" of getting our group off the ground, but I worked with her going out to doctor's offices and asking if we could put our flyers in offices. Slowly she began to get more and more people contacting her and we began having meetings every month. This was one of my light bulb, "ah ha" moments. I discovered I had become a very educated patient who could help others and walked out of every single Support Group meeting feeling better than when I arrived. 

Around the same time, my IC doctor had suggested that I also consider seeing a psychologist to help me learn to cope with how to "live" with having a chronic disease. He gave me a referral. Again, I thought silently: "Who me? I need therapy?" That momentary feeling of, not me, I don't need professional counseling. But again, there I was in that hole and now there was another set of hands reaching down to show me the way out. I walked across the hall and made my first appointment to begin counseling with this wonderful psychologist. She works only with patients suffering from chronic illness/disease/pain, so it was a perfect fit. I felt comfortable immediately and free to talk about anything with her. This was also a light bulb "ah ha" moment. And this has changed my life forever as well.

Through my Support Group Leader I became actively involved with our Support Group, and then the ICA as a Patient Advocate. I learned I had something to offer people and that was so positive. I didn't have to be trapped down in that hole and maybe, just maybe, I could offer help, support and encouragement to others and reach down and help someone else out of the hole, or at least give them directions, so to speak.

Working with my therapist, I realized there were so many positive things I was doing that I wasn't giving myself credit for. That I was much stronger than I thought. That I was proactive and an excellent problem solver. I didn't sit around and wait for things to happen, I was making changes, taking an active part in my own care, and taking some control back. 

There is always a way to learn to cope. We don't have to be stuck in that hole. No, we can't do anything about getting IC. But we CAN do something about how we deal with it. It's not something one fixes overnight, but finding out I suffer from very normal and understandable anxiety and mild depression was eye opening. But that's partly because I refused to stay in that hole. I could have sunk into the depression that some do; it's an easy thing to do when dealing with the pain and illness we do.

But I could visualize another path. And with some very helpful hands, every step I have taken out of that hole has been a step in the right direction. It is positive and it helps me cope. Do I have my moments? Of course I do. 

But a few key things I learned through this process for me were: 

- I got myself off that lab rat wheel, as my doctor calls it. With his encouragement and support, I stopped obsessing over my voiding diaries and other symptoms. I no longer keep track of my voids ALL THE TIME. After 12 years, I know where I am and can tell when things get worse. I also learned I was capable of changing how I respond to living with chronic pain. Every setback isn’t a catastrophe or the end of the world. I learned to stop catastrophizing and learned coping skills to deal with setbacks and challenges. It doesn't take the pain away completely of course, but learning coping techniques can and do make a difference. I work on this. If I have a setback, I talk about it in therapy.

- Learning not to be embarrassed about IC and how to talk about it with others was a big step out of the hole. Being able to explain it to family, friends, coworkers was important to me. Learning how to do this without self-pity was important. Those that truly care about me have supported me and took a sincere interest. Others that weren’t have fallen away. But that’s the other thing I learned. This will happen. Learning to LET IT GO has been an important part of learning how to cope with chronic illness. 

- A big deal for me was when I realized I needed to stop wasting energy on WHY I have IC. We don’t know and probably won’t know in MY lifetime. I don’t care. I can’t change it, so that’s negative energy I don’t want to waste. I choose instead to focus on what I CAN do and do not spend time on what I can’t change. 

- Finding my voice among the IC Facebook community helped me as well. All of you were another hand reaching down into that hole to help me out. It also gave me the chance to try to do the same for others. With the encouragement of family, I began this Blog. This has had a real positive impact on my life with IC. Becoming a real patient advocate; using Social Media to try to raise IC Awareness - these activities changed my life and how I feel about living with IC. I consider myself a true “Activist” and I like that.

- Becoming a dues paying, card carrying, active and involved supporter of the Interstitial Cystitis Association (ICA) is something I feel strongly about. Working on fundraising for the ICA over the last three years I have raised over $3,000 that has gone directly to IC research and none of what I have done is complicated, hard to do or takes a lot of time. Anyone can do what I’ve done. But for me, this has been and continues to be something I am passionate about. This gives me something positive on which to focus my energy. 

- And finally, my Support Group Leader! WOW! How to even express how I feel about her. This is a woman who inspires me every single day and has been so supportive, encouraged me to do what I never thought I could, and has become a friend that I will be so glad I made along this journey. I owe her more than I can say! She is a true IC Advocate and Hero and others may not know it but she has done so much for everyone with IC, we all owe her a debt of gratitude. She certainly has mine and then some!

There IS a way out of the hole; you just need to reach out and grasp the hands of those willing to help you find the way out. They are there if you look. I had to look for those hands, but I found them, some found me and together they have given me a way out of that deep, dark hole. 

So here’s a little tale that I think speaks to my philosophy about learning to cope and live with IC and anything else we all have.

“This guy's walking down the street when he falls in a hole. The walls are so steep he can't get out.  A doctor passes by and the guy shouts up, 'Hey you. Can you help me out?' The doctor writes a prescription, throws it down in the hole and moves on. 

Then a priest comes along and the guy shouts up, 'Father, I'm down in this hole, can you help me out?' The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by, 'Hey, Joe, it's me can you help me out?' And the friend jumps in the hole. Our guy says, 'Are you stupid? Now we're both down here.' The friend says, 'Yeah, but I've been down here before and I know the way out.”

Monday, November 18, 2013


If you read my last Blog, you know I have a nasty case of Bronchitis. On Friday I saw my Primary Care and he prescribed an inhaler, antibiotics, over the counter Mucinex and told me if I didn't feel improvement by today I was to call him.

Well, woke up this morning and did a check of how I was feeling and made the call. Not doing any better really. It is a real challenge for any IC patient, already struggling with their IC and often multiple chronic conditions to treat these other illnesses that pop up. Many of the treatments for things like bronchitis, viruses, the common cold and so forth are that many cause our IC to flare. I know many IC patients are always asking the question "what does anyone take when they have a cold?". 

Well, I really give doctors fits because on top of my IC issues, I suffer from cardiac issues and epilepsy, both of which require I take medications to treat them. For example, due to my cardiac issues, I cannot take any medications that can cause a rapid heart beat. Well, the inhaler the doctor gave me did that, so I had to stop it. I can't take the cough suppressants he initially wanted to prescribe because they contain ingredients I am allergic to. He found one he thinks will help that won't make me sick, so we'll give that a try. Now he also said we need to move on to a steroid and a different inhaler that he thinks will be OK for my heart. So my sainted mother has to run around again today and get all my meds. 

Even worse, I felt I needed to call my IC doctor's office and cancel my appointment for tomorrow. I was to have a 1 hour programming session for my InterStim and get my weekly instillation. There is no way, feeling as weak and exhausted as I do, that I can work on programming for an hour. I also don't want to expose others to my germs, so it's best I stay home. But now I don't get to have my instillation and I really could use it. All this coughing hurts as it is, but my bladder really doesn't like it. So an instillation, at least for me, is something I could really use right now. I'll have to deal with that now as well.

I know so many of us work hard to avoid getting sick because when you add that to having IC and all the other issues many of us deal with, it just makes things that much worse. My body already hurt all over and now after coughing and wheezing for a week, I am beyond exhausted. Not being easy to treat just makes these things so much more challenging.

But, my doctor is working with me, trying his best to help and we have to take it one step at a time. If I am not seeing improvement in about 3 days, I'm under orders to call him back and let him know. At that point, he said he'd want a chest X-ray. Let's hope this new plan helps. My bladder can't take it and I'm just wiped out.

Having IC and getting sick(er) is hard and I would really appreciate it if these nasty germs would set up housekeeping somewhere else!!!

Saturday, November 16, 2013


As if IC and all its associated conditions weren't enough for us to deal with, getting sick with a virus or cold just makes everything so much worse! As most of you know by now if you're a follower, I have a nasty case of bronchitis and have been coughing for days! It hurts so much and aside from feeling like I'm going to crack a rib from the coughing, my bladder doesn't like it much either! 

I saw my Primary Care doctor yesterday and he confirmed I was extremely congested and needed to treat it aggressively. So I have an antibiotic, an inhaler and over the counter Mucinex. He told me if I'm not better by Monday or Tuesday to call him and he'd want a chest X-Ray. I'm hoping it won't come to that!

I am taking the weekend to be a patient - well, more so than usual! At least for today, I'm not even getting out of my jammies; I didn't make my bed in case I want to take a nap. My "sainted mother" is waiting on me not allowing me to do anything; bringing me my meals and anything I need. She even brought me our bell to ring if I need anything. I am so blessed to have such a great Mom (a plus, she's a retired Registered Nurse!). She already takes care of me with all my IC and related issues and when I get sick, she kicks it in to overdrive. She is the best Mom! I don't take it for granted.

I have no idea how I got this. I avoid sick people like the plague. I don't really go anywhere except my IC doctor's office. Family knows to stay away when they are sick and are great at watching out for me and telling me to steer clear. But I guess I've been lucky. I haven't had a cold or anything like this in a very long time, so I guess it was bound to happen. I'll take my medicine, rest, drink my water and hope we can kick this.

But seriously, I HATE getting sick(er)!

Friday, November 15, 2013


If you read my Blog, you know that I am a big believer in the use of Positive Affirmations and Inspirational Quotes. I found this great website with an article on using Positive Affirmations, what they are, do they work and how to use them. I wanted to share it with everyone, as I feel this technique can make a huge change in how we cope and live with our IC. I hope you'll read the article, give it a try and see if using Positive Affirmations can change how you think and feel! 

Here's the link to the story:

Wednesday, November 13, 2013


Fall 2013 Issue Covers IC!

I have been anxiously waiting for this to become available online so that I could share it with everyone! The American Urological Association (AUA), who most IC patients know for the AUA Guidelines on the Diagnosis & Treatment of IC, publishes a magazine for its members (much like the ICA does for its members) several times a year. This is a professional medical magazine for doctors and healthcare providers.

The Fall Issue of the AUA's Global Connections magazine COVER STORY is on IC! And as if that wasn't exciting enough, because I was able to get the AUA to follow me on Twitter, when working on putting this story together, they contacted me to ask if I would contribute to the story! Would I? Heck Yes!

This has been in the works since August and I didn't want to say anything until the story was actually published because one never knows if something will happen and it won't come to pass. Not to mention, I had no idea if the quotes I provided would be used or end up on the "cutting room floor" as the saying goes.

I am very excited to see IC get such an important and thorough story done in a professional medical journal, for doctors, not to mention that it's the Cover Story to boot! To be asked to be part of this important story means the world to me. My part is very small and at the end of the article, but to be given the chance to speak on behalf of IC patients gives me such a sense of satisfaction. I hope this story reaches the medical audience who read this magazine and, therefore, helps IC patients get better treatments and understanding.

I want to thank the AUA for covering IC in such a major way! I also want to thank the AUA for contacting me and asking me to contribute, however small, to this story! We need all the awareness we can get, and this is a huge step toward something so many of us are always asking for: educating the medical profession! 

Here is the link to the story where you can read it. Print it out, give it to your doctor and their staff. Share it with family and friends who you feel need to see something this significant about IC to fully understand it! 

This is a screen shot of the Magazine Cover;
I think the picture is a perfect visual of what having IC feels like!

Monday, November 11, 2013


  1. Lidocaine Ointment! I could not live without my Lidocaine Ointment! The usual form used my most doctors is 2% GEL; however, my doctor prescribed for me the higher dose of 5% which comes in an ointment. I LOVE this stuff! I use a big blob of it, and using a latex glove just slather it all over the entire area, my vagina and urethra and surrounding skin. It numbs everything and when I am having a flare, my burning and irritation are at their worst, this is my Number 1 favorite thing!
  2. My Heating Pad! I couldn’t live without my heating pad. Some people prefer cold and others like me prefer heat. For me, this is very often used in conjunction with Favorite Thing #1. Often, after applying the Lidocaine Ointment, I will go sit down and put the heating pad between my legs and it just does so much to help relieve my pain. These two things make the top of the list of my Favorite IC Things!
  3. Hydrophilic Coated Catheters! I have to self-catheterize at least 5 times every day. I always have urethra pain (See Favorite Thing #1) so finding the right way to self-catheterize and minimize the discomfort was a huge issue. My doctor’s office found these catheters and gave me some free samples to try and it was life changing - really! They are the greatest catheter invention as far as I’m concerned. No lubricant is needed and I love them! Having to use catheters every single day, these made my life so much easier. They are super slick and insertion is practically painless. Again, I could not live without them so they make my List of Favorite Things for this reason!
  4. Bladder Instillations! These are my life saver! As someone who can’t take any form of pain medication, this is how I manage my pain and they really do the trick! Once that cocktail hits my bladder, I can literally feel my entire body sort of “unclench” and relax a bit as the pain subsides. It took some trial and error, patience and perseverance to find the right cocktail, but it paid off in the end and we found what works for me! Love my instillations!
  5. InterStim! I have two and for me, I don’t know where I’d be without my InterStim. Before I got them, I was voiding 60-70 times per day and up all night. With my 2 InterStim we have been able to get that down to between 25-30 voids per day, which is a huge improvement. Do I wish I could get my voids lower? Of course, but when I realized that we had managed to cut the number of voids by better than half, it was an “ah ha” moment for me. That’s a huge improvement and one I was praying for when I was at my worst. I’ll take it! Learning to adjust to these strange devices in the early days was strange. But they have become something I barely know are there anymore and they are something I am glad to have help manage my symptoms! Favorite Thing #5!
These are MY personal Top 5 Favorite IC Things! Things I couldn’t live without to help me manage my IC.

What are YOUR Top Favorite IC Things that you can’t live without? Share them with us all by commenting in the comments section below this post!

Saturday, November 9, 2013


This is going to be a busy weekend. We have relatives coming to visit for the weekend and we are all looking forward to seeing them. It's been so long, that I think most of us have never met their two young children! Mom has been busy for the past few days preparing for their visit; grocery shopping, cleaning, and so much more. 

As I'm sure you can all relate, I try to help with all these preparations, and I managed to do a few things around the house and I am TRASHED! I am in so much pain right now, I'd rather go back to bed. But, I'm showered, hair washed, clothes on, and I will relax until they arrive.  Just sitting and visiting will take its toll, but I will do it. Maybe since their youngest isn't even a year old, there will be napping opportunities for us both! 

Tomorrow, our whole family will come for a big dinner in their honor. It's nice when we have these dinners. It's so great to spend time with family even if it's hard. It feeds the soul, even if my body is yelling back at me to go lay down! In these cases, my soul speaks louder than the pain and I find a way to participate. 

So until they get here, I'm going to close my eyes and rest. I will enjoy the family time regardless of how much I hurt and it will be worth it. Some things just are; this is one of those things! 

Thursday, November 7, 2013


Assessment and Reflection

It’s been 30 days and as the ICHope Module recommends, I went back online to re-take the assessment portion of the Module.  

As I completed the questions in the first 10 percent of the assessment, I was told that based on my answers, my pain level is in the severe range, which is the same as it was 30 days ago. The Module recommends that I talk with my doctor about my progress, which I am actually doing. I feel good that, even though there has been no change in pain level, I am actively working on this with my doctor as the Module suggests. 

The Module helps with three important areas when it comes to helping us “manage our pain”:
  1. Finding and working with a healthcare provider who is committed to helping you manage your IC pain.
  2. Doing what you can do to manage your pain.
  3. Staying hopeful and empowered.
For me, I feel I already have #1 worked out. My doctor is committed to helping me and is always looking for ways to manage my pain. He has never given up on me, where I believe other doctors might have a long time ago. This is a never ending challenge for a patient like me who doesn’t respond to pain management therapies, but my doctor and I always discuss this at every appointment. It is ever present, and I am comfortable with where we are in this process.

However, #2 and #3 are areas where I feel the Module gives me, personally, the most benefit. I am doing all I can to work on improving my pain, including being actively engaged in the process as recommended. The Module gives me key tips to help me find strategies to cope and remain positive. Proceeding through the assessment for the second time reinforces the things I know I need to work on and keeps the strategies in the forefront of my thinking. 

These are all strategies I have learned over the years and have talked about in therapy and written about in my Blog. However, to see them in this Module really did two things for me. It made me realize that these are scientifically proven techniques that can really make a difference in how I manage and cope with my IC pain and also helped me see I am heading down the right path.

By going through the assessment a second time, I discovered that I have made progress in certain areas of self management and will continue using the tools and working toward making necessary changes. In other areas, I found out that I am now in the Maintenance stage, which means I am doing what I need to do in order to manage and control my self-care strategies. Repeating the assessment gives you an opportunity to see where you are in the process of self management and get suggestions about finding alternatives if a particular strategy isn’t working. If you are stuck in a certain stage and need to move on to the next, the Module gives you the tools to create an action plan.

I loved the section at the end of the assessment where you can evaluate your self-image. This is something that has changed for me over the course of my IC journey. I started therapy because I was feeling powerless, defeated, negative—all things many of us go through. By using the Module, I realized that I am moving the needle on these feelings. I am more positive and more in control of my care—I no longer feel hopeless. To be able to actually see that I have made progress in the area of self image is really empowering. 

I hope everyone is working with the ICHope Self Management Module. There is so much to be learned about yourself, where you are emotionally in dealing with your IC pain, and ways to make changes!

ICHope Module

Be The Change

You can also read this on the ICA Voices of Hope Blog

Tuesday, November 5, 2013


Therapy session today with my psychologist. Had a lot to talk about as usual. I think most IC patients could use up a one hour therapy session and wonder where that hour went. Happens to me every time!

An interesting topic came up in our session today. We had been talking about how long I have had IC and how long after that I began therapy. I was diagnosed with IC 11 years ago this month and began therapy 7 years ago thanks to a referral from my IC doctor.

My Mom has always taught me to be an educated patient, but I had never really needed to put it into practice much. Mom is a retired registered nurse and has always been the "go to" person when trying to figure out if whatever complaint I had warranted a visit to the doctor. If Mom said go to the doctor, well then that's what I did!

I was aware but not fully aware, of how much I was going to the bathroom 11 years ago. I just figured I was drinking too much Diet Coke, plus I was going through peri-menopause and knew that an increase in trips to the bathroom happened around then. So I was just putting it in the back of my mind. Until a family vacation. It was car trip from Illinois to Vail, Colorado. On the first day out, there was a long stretch where there was no place to pull off to use a bathroom. In the past, I could hold it and make it to wherever the next rest stop was. Yeah, I'd hurry in to the bathroom, but it was "normal" discomfort. This time, when we finally stopped, I was near tears. I was in so much pain that when I started to get out of the car, I cold barely stand. It burned when I urinated and my bladder hurt so much! Even with that much pain, I just figured that's what you get for drinking that Diet Coke in the car knowing we would have a long stretch without access to restrooms.

Toward the end of the trip I didn't even ask my Mom about all these visits to the bathroom. She came to me and said, this isn't normal - go to the doctor! It was then I really woke up and realized this was a problem and I needed to go see a doctor. 

Cut to my first appointment with my new Urogynecologist back in November 2002. He diagnosed me on that first appointment with Interstitial Cystitis. What? What's that? Thus began the long 11 year journey from ignorant patient to educated patient advocate and all the way to this Blog, fundraising and more. I am blessed with a wonderful doctor. He spends as much time as I need, even after all these years, to answer every single question I have. He has never rushed me through an appointment and most important, has never, ever, given up on me when I believe many other doctors would have. I credit his caring, concern, kindness and willingness to help me understand my medical situation for educating me about IC. 

Don't misunderstand, I did plenty of research on my own. I was always like that, but as my struggle with IC, treatments that we tried and failed, went on I became an avid researcher so that I could understand what was happening to me and what to ask my doctor about during our appointments.

So back to the topic that we discussed during my therapy session today. I realized that, now, having gone through this 11 year IC journey that went from bad to worse for me, that I am glad I did not know then what I know now.

If you follow my Blog, you know I am a huge advocate of becoming an educated patient and I still believe that. Learning all I could as I went through this process was an important part of my care. I always asked - and still do - tons of questions. Bring in information to ask my doctor about, and take notes. 

But, what I'm glad I didn't know back then was what this journey would entail. What I would end up going through. How many surgeries I would have. That I would have to sell my home and eventually end up on disability. I'm glad I didn't know this is where I would be 11 years later.

I realized that while I am a bit of a control freak; HATE waiting around for answers and test results etc. I am glad I didn't know how difficult a journey this would be. It has been a journey for me. One that has taught me so much. Taught me to be my own best advocate. To become as educated about my health as possible. To ask questions and speak up for myself. 

But that's different than knowing what the road ahead would be like. And I'm glad I didn't know it would be as bumpy and winding as it has been. I'm OK with that. I said to my therapist today, what good would it have done me to know in advance that this is where I would end up? I don't think it would have helped and might have made the journey harder.

Of course it's all hypothetical because we don't have a crystal ball and none of us can know what lies ahead in our personal IC journeys. So it's really a moot point. But I really felt my journey has been an interesting, albeit a difficult one.

Going from what I now consider total ignorance to what I am told by all my doctors is an extremely educated, self aware, informed patient has been a process. I may not have wished for this to be where my journey has taken me, but the journey is not over yet. Who knows where it will end. It will be whatever it is. I don't need to know today what tomorrow will bring anymore. One day at a time and never giving up; that's my journey now. I'll never stop learning and asking questions about my treatment and care. But I don't spend a lot of energy on two issues: why did this happen and what's going to happen tomorrow?

The journey continues!