Wednesday, July 31, 2013


Today, a former co-worker and Facebook friend of mine posted this on her FB page:

"Weight: To all of you in my FB family that have struggled with weight, know that you are not alone. Everyone has struggles in life, and weight is one of mine. From the tender age of 13, I yo-yo'ed up and down. I know many of you have advice and programs and lifestyles that help people like me. Thank you for that, but this is not a post about that. This is a hug to those that have struggled with weight and its shame. Know that weight does not define you. You are so much more than that. If you are ready to make a change, go for it. If you are not, that is okay too. Be kind to yourself."

WOW! Did that resonate with me. On top of my IC struggles in the last 12 years, I have battled with my weight as well. Actually, I too, have battled my weight since I was about 13! I have lost and gained over and over. Ever since going on Disability, it has been even more difficult. I am less active due to my IC and the pain and as soon as I stopped working I gained 15 lbs. fairly quickly. I have always had an extremely slow metabolism and the level of workout I need to put forth to impact weight loss is just not possible anymore. I worked so hard last year for nearly 8 months get a lousy 15 lbs. off but eventually I did it and I was back to my "goal" weight. 

Yet, here I am again this year, fighting the same battle over again. I have managed to gain back about 12 lbs. again and it has me SO frustrated! 

I posted this reply back to my friend and wanted to share it here too:

"Thank you for such a wonderful post on this. I have battled my weight since I was 13 and I'm 58 now. One would think I'd have it figured out. I KNOW what to do, but doing it is another whole story. And add to that being on disability and unable to exercise as I used to, if at all, makes it that much more challenging. I keep losing and regaining the same 10-15 lbs since I went on disability and it just adds to the frustration of my health situation. I know I should cut myself some slack but the fear of gaining back the entire 50 lbs I lost while still working haunts me and yet this has been a particularly challenging time and issue for me. Thanks for the encouragement."

So I start over today yet again. Trying to stick to my plan and do what I know I should. We each have our own unique challenges in life, then add IC and associated conditions and it can make things doubly difficult. But I won't just give in; I will keep trying.

Yup - IC, exercise, weight, whatever: Some Battles Never End!

Tuesday, July 30, 2013


I am very lucky to have a wonderful, talented and knowledgeable IC doctor. Without his dedication and help, I truly believe I would never have been approved for SSDI. We did have to file an Appeal as I was denied the first time around, but thanks to my doctor, we won our Appeal and I was approved.

Nothing is ever finished, however. Both private disability insurance and SSDI require Continuing Disability Reviews, so even after you've been approved, there is always something to prove - again! I feel like it's all I do. Fill out paperwork, ask my doctor's office to constantly fill out paperwork and try to make phone calls to these agencies. It's a never ending loop, but if we are to continue to get the benefits we deserve, we must accept this and work within the system and hope our doctors will work with us as well.

Yesterday the mail arrives and there is a letter in my mail from our Secretary of State's office. I look at it and think to myself; no, my driver's license is current; my license plates are current, so what could it be. As I opened it, much to my surprise, it was a letter regarding my Handicapped Parking Placard. My IC doctor is the best and about 6 years ago, I went to him with an application for a Handicapped Parking Placard for my state, Illinois. He told me he believed I was deserving due to the severity of my IC/pain, but knowing how these things work he said he wasn't sure the state would see it the same way. But he said, leave the form with him, let him think about it and he'd see what he could do. So that day I walked out of the office never knowing whether it would even get submitted; we all know what paperwork in a doctor's office is like. It can be a black hole and often things fall through the cracks. I had no way of knowing if he'd actually "think about it" and fill it out and send it in. But he did. And about a month or so later, my Handicapped Parking Placard arrived in the mail. It has been a blessing. When driving to various places, if I need to pull over to use a restroom, we don't have to drive all over looking for a parking space. If I am having a particularly bad day and my pain is at its worst, I can park in a Handicapped space and not have to walk as far to get to where I am going. It really is a blessing and I don't take it for granted.

So the letter I got yesterday states that the State of Illinois General Assembly made significant changes to the Persons with Disabilities Parking Program. There are now TWO different and distinct types of permanent disability parking placards in Illinois and it depends on the type of disability and diagnosis from your physician. According to the letter, the legislature made these changes because of "significant abuse" of the system. That's another whole Blog I could write about! 

Beginning January 1, 2014, only persons with specific types of disabilities will be exempt from paying parking meter fees. Who even knew I could do this? I had no idea that having a Handicapped Parking Placard meant I could park in a Handicapped space with a meter and not pay! But apparently I could have! 

Now, the state is dividing individuals into two categories; those that are physically incapable of reaching parking meters in order to put the money in due to the limitations of their disability and a separate category for others who may still be deserving of a placard but will have to pay parking meter fees.  OMG! 

So, even though I have a full year left on my current permit (Illinois issues them for about 3 years and then you must renew and re-prove that you still need it - of course), I have to take this form to my doctor's office and ask that they complete the form AGAIN and hope that I will still meet the criteria for a Handicapped Parking Placard for people who DO have to pay parking meter fees. Who knows if the state will be looking at these new applications with a more discerning eye and perhaps decide I am no longer deserving. Maybe nothing will change. 

But once again, there's always something to prove - again! It's always something and it's always stressful. When I called the Secretary of State's office to ask about this form, I was told once they receive it, because this new form has gone out to every single person in the state who currently has a Handicapped placard, it will take 90 days at least before I hear whether or not I will be renewed. So it could be Thanksgiving before I find out. 

I hope my doctor's comments will be sufficient to keep things as they are now. This is something I have come to rely on. Could I live without it? Yes. Will it make my life much more challenging than it already is? Absolutely!

So if you too have a Handicapped Parking Placard and live in Illinois, be aware that this is happening. 

The never ending fight to keep proving my disability goes on! Here's hoping I'll win this latest battle!

Monday, July 29, 2013


I guess today is just one of those days. I've been sitting here waiting for inspiration to strike so I could write today's Blog. Nothing is coming and I'm very sleepy. I did get up and go for a walk this morning and then my Mom had to take me to run some errands; time to clean the cat's litter box, get more cat food and so on. By the time we finished the errands, I vacuumed and cleaned the litter box, fixed myself lunch, I feel completely exhausted and uninspired.

So I will listen to my body and the messages it's sending and I am going to take it easy and take a nap. Sometimes we just have to give in to what our bodies are demanding and not force things too much and end up in a flare. 

I encourage everyone to listen to your bodies and do what they are telling you, as much as possible. I know it's hard when you have a family and home to care for. But you are no good to your family if you work yourself into total collapse.

Give yourself a break - I am today. Rest up when you need to and take it slow if that's what's required. There is always tomorrow!

Saturday, July 27, 2013


It's a nice cool morning, bit overcast, today but for me great walking weather. I decided that I would try a walk. My Mom asked if she could come along with me and of course I said yes. Mom is 10 weeks post-op from knee replacement surgery and doing great; she was discharged from physical therapy yesterday with instructions for at home exercises, one being to walk some. She was worried she was slowing me down, but I really didn't care as I am feeling very tired and have very little energy today, so off we went.

It was nice to have my Mom's company and we enjoyed our little walk together. I always have to remind myself I can't do what I used to and that really, for me, the point is to just "keep moving" so my body doesn't just turn into one big atrophy lump! Today was what I call an "easy" day. When I was a runner, training for races, you were always supposed to follow the training rule of "hard/easy"; i.e. a hard (challenging, longer) run one day, and then a shorter, easier run the next. I still follow that rule even with my little walks these days. It's always a good way to approach any form of exercise to give your body recovery time. 

Anyway, I got a little walk in today. I won't win any prizes for speed or distance, but: "Something is Always Better Than Nothing!"

Create Maps or search from 80 million at MapMyWalk

Friday, July 26, 2013


Today is a very good day for me! As the title of this post says, research, patience, perseverance and time can pay off big time and for me, today, it did!

If you follow my Blog you are well aware that I had been doing my own bladder instillations at home for some time until the chronic UTI problem reared it's ugly head and lasted 4 long years! I long ago stopped doing my own instillations at home because of this while my doctor and I worked very hard to get this infection problem under control. This took patience, perseverance and time but we seem to be winning the battle as I have been infection free for close to 6 months (one more week!); this is paying off big time!

Things have been going so well the last time I saw my doctor he asked me how much benefit I was getting from coming into the office once a week for my instillations. I told him they helped a lot, but a week in between is really pushing it and that I wished I could do them more often but that there was no way I could handle driving an hour to/from his office to get them twice a week. So we talked. He asked if he approved me doing an instillation once a week at home, would I be ready to give it a try? I said yes. I told him I really missed having the ability to do them at home and if we started slowly, I would be up for it. So we agreed he would be happy to prescribe this for me.

Next hurdle. I am now on Medicare since going on Disability. When I was doing them at home before, I was still on private insurance and my private insurance had what is called a "Specialty Pharmacy Division" that handled these types of unique prescriptions. I had to buy certain supplies that weren't covered but I got all my meds shipped to me for 90 days and just had to pay my co-pay. So now that I am on Medicare, I had heard all sorts of stories from others that Medicare doesn't cover at home instillations, so I was not optimistic about getting this approved. 

But I am a researcher, as many of you know, and I am willing to take the time to dig deep, ask questions, not take the first no for an answer and keep at it before I give up. So today I got on the phone and called my Medicare Prescription Drug Plan and started digging.

Here's where the research, patience, perseverance and time paid off. It took digging through three layers of people on the phone before I discovered that, YES, my Medicare Prescription Drug Plan DOES indeed have a Specialty Pharmacy division! YAY! 

I was connected with the nicest, most patient woman in the Specialty division who was willing to work with me, unravel what it takes to put together everything necessary to do an at home instillation and what supplies were needed. I was on the phone for over an hour as she looked up medications, figured out coverage and co-pays. She even went the extra mile when the computer was telling her I would have to pay cash price for the 60ml syringes and the regular needles required to withdraw all the meds out of the vials they come in. She told me that didn't seem right since I was a Specialty customer and this was clearly a specialty prescription so she put me on hold to look into it further. Low and behold, her taking the time to research these items further meant she was saving me over $80! They were in fact items that should be provided free of charge to me because it is a specialty prescription and so I do not have to pay for these two items! Again, patience, talking with her about this, her willingness to go the extra mile because of a little prodding from me on this, and I am getting those two supply items for free! All my meds are covered and the one that wasn't covered, the retail price I have to pay is basically the same price as the co-pay would be (not even $4 higher), so I was excited about that too! All the time on the phone, being patient, willing to explain what I needed - it paid off big time!

So the moral of the story is the title of this post: Research, Patience Perseverance & Time can pay off big time! If you are considering doing at home instillations, it can take some real time, energy, patience and knowing the questions to ask. But if you are willing to do so, it can reap big rewards! This is true for just about anything when it comes to taking control of our IC and our treatment plan, working with our doctors, insurance companies, pharmacies, hospitals etc.

So if you persist, ask questions, don't just take the first no for an answer, you too could find it Pays Off Big Time!

Thursday, July 25, 2013


So many IC patients talk often about the struggle of finding medical professionals that understand IC, are familiar with current treatments, diagnostic principals and more. It is a problem for many but there are some excellent tools available for you to take control of your own healthcare and help your healthcare providers learn more about IC.

First, if you are not already familiar with the American Urological Association's (AUA) Guidelines on the Diagnosis & Treatment of IC, you should be! I believe strongly that this is a tool every patient should know about, read, print out and use as a tool to talk to your doctor about your diagnosis and treatment plan, but especially if you feel your doctor is not as knowledgeable as they should be and you don't have the option to go doctor shopping. Use this tool to help your doctor help you! Here's a link to the Guidelines:

Another great NEW tool that you should recommend to your doctor, even nurses, is the ICA's New FREE Educational Program for Healthcare Providers. This is an excellent tool designed for an interdisciplinary audience with the latest clinical information on identification and management of patients with IC. Healthcare providers that take the course can earn continuing educational credits as well, so there is incentive for them to use it. Here's the link to the Educational Program for Healthcare Providers:

So if you feel your medical team could help you better by sharing these tools with them, then don't hesitate to share these tools with your medical team!

There are tools available to us and if we aren't getting the care we need, you can Help Yourself by Helping Your Healhcare Providers!

Wednesday, July 24, 2013


Once again, this year for my Birthday I sent out my annual message asking family and friends to make a donation to my personal Fundraising Campaign on the ICA website (link below so you can check it out):

As always, my friends and family stepped up and donated a significant amount of money to the ICA and I am so excited. The best part is that since the ICA developed this online tool to create your own Fundraising Campaign page, I have raise a Grand Total of $2,951.75!

I am so excited and now I want to hit that $3,000 mark, so that's my next big goal! But any way you look at this, this is close to $3,000 that 100% of which is going directly to IC research to help us all suffering with IC!

But, here's the thing. If I can do this, so can you! Setting up your page on the ICA website is so easy and I'll post a link to where you can do that. All I ever do is email a message to friends and family asking for donations to my campaign instead of presents for my birthday and Christmas. If helping to raise funds for research is important to you, let's get more people on board with this great way to help the ICA raise money for research. When you establish your page, you can designate that you want 100% of donations to go directly to research, which is what I did.

I don't do any complicated fundraising projects; just a simple email message and look how much I've raised. It's not hard and imagine if just 10 more people did this and raised the same amount, we'd have raised nearly $30,000! Just think what that kind of money could do.

So often I see people talking about the need for better treatments and that takes research which takes funding. We can all have an impact. It's not hard and you don't have to do a ton of work to do it! 

So, let's see how many of you take up my challenge and set up you own Fundraising Campaign and start trying to raise money for IC research! Together we can do so much more than just one person! Let's see what we can accomplish together!

Tuesday, July 23, 2013

TWEET FOR #ICAwareness

I am sure many of you are aware that, in addition to this Blog, I have also taken to Twitter to help raise #ICAwareness. Well, today I am very excited. It has taken persistence, dedication and time but I now have 41 "followers". Of course, I'm no celebrity with thousands of followers, but the point of getting followers is that, if they have a lot of followers, then my Tweets go out to all of their followers too and it's exponential. 

I have been truly excited and honored to have gotten some big health organizations to follow me such as the American Urological Association (AUA); the Urology Care Foundation; C. Michael Gibson, M.D.; Brigham & Women's Hospital; Urology Times; Congressman Brad Schneider of Illinois and of course the ICA along with many IC patients and more. I have also gotten some great Re-Tweets from Dr. Nancy Snyderman, Dr. Lisa from The Doctors, the ICA, the National Organization for Rare Disorders; and again other IC patients.

Anytime I can get an important doctor, medical organization/publication to follow me or re-Tweet me, I am reaching thousands of people to help spread the word about IC! The more the better, of course!

But today is a landmark day for me. I now have 41 Followers and I've sent out 3,473 Tweets about IC! I am following 149 people/groups/organizations and Tweet almost every day about IC. If all of us suffering from IC did this, imagine what we might accomplish!

So won't you all join me on Twitter and help raise #ICAwareness about #IC! 

Sunday, July 21, 2013





Bjorn Ulvaeus; Stockholm-2011

"Thank You" - Dido

Saturday, July 20, 2013


The other day an IC patient that used to be Facebook "friends" with me posted about filing for SSDI and how "Obamacare" was making it more complicated and how she "hated" the Affordable Care Act (the correct name for the legislation). Her claim was that due to the Affordable Care Act, it is now MANDATORY to send all medical records to your regular (primary care) doctor and not just have the treating specialist complete the paperwork and submit the appropriate medical records.  She said her doctor (actually said 3 told her this) is saying that the primary care is the one that "decides if I am unable to work. My doctor said that Obamacare has tied the hands of specialists, leaving it up to primary care doctors to make decisions about my disease."

I tried to explain that this is NOT the case. Unfortunately, I can't post this to her anymore as apparently my disagreement with her warranted an "unfriending". My goal, although I do support the legislation, is always to try to help people navigate filing for SSDI and I was not trying to discuss politics. I do support the legislation and it is a mystery to me how anyone suffering from chronic, incurable illness that is filing for SSDI and is facing a real possibility of losing insurance coverage, having claims denied and more, could oppose this. And although she offered no substantive arguments, she made it clear she "hated" it. That's fine. 

But the reality of the point I want to make to everyone who is or might be filing for SSDI is that the Affordable Care Act and SSDI are NOT, repeat NOT connected in ANY way whatsoever. If your doctor is telling you this, they are misleading you because they have their own reasons for not liking the legislation and/or don't want to take the time to file the paperwork themselves and want to push it off on another doctor.

I take this very seriously and wanted to be sure I had my facts straight, so I went straight to my own Disability Representative who helped me file and appeal my claim. Here are is comments verbatim:

"I am unaware of any provision of the Affordable Health Care Act that impacts the filing or imposes processes not currently in place. Although I have not researched thoroughly, the Affordable Health Care Act impacts only health care access. It does not address SSDI disability claims. It does impact disabled individuals ability to obtain health insurance by eliminating pre-existing conditions and providing some financial assistance to pay for health insurance based on income and/or lack thereof. 

Having stated the above, what you describe below would appear to me to be routine whether or not there was/is an Affordable Health Care Act:
  1. An individual’s primary care physician would normally make referrals to a specialist.
  2. The specialist would normally provide a report of findings or lack thereof to the primary physician
  3. Based on those findings the primary physician forms a medical judgment that enhances, modifies, etc., his medical opinion based on the medical evidence
  4. The primary physician is also reliant upon the specialists for their medical expertise and for which he/she does not have the expertise

So, the primary physician’s medical opinion is of import but is tied to the medical opinion of the specialist in determining the total disability of an individual. I would think that if the specialist said you were disabled and the primary physician does not, an unusual situation, the SSDI claim for disability becomes very problematic."

My intention is to always help people navigate their way through the Disability process. I am not an attorney and don't claim to be. But I have been through it, keep current, understand the process and do my research in an attempt to provide assistance to others feeling overwhelmed by the process.

If anyone is going to be filing for SSDI, hopefully this information will be helpful to you.

Friday, July 19, 2013


As those of you who follow my Blog know, I have been battling chronic UTI's for over 4 years, having 17 UTI's last year alone and a total over over 40 during that time. It was the worst period of time since being diagnosed with IC. 

My doctor never gave up and we kept trying different things to make it stop. Nothing was working and as each day, week, month and year ticked off on the calendar, it got more and more painful and challenging for me to cope with the situation. I sat in my doctor's office in tears because I was getting infections back to back with less than 48 hours between clearing one infection and getting another. They were never the same bacteria, so it wasn't that I just didn't get enough antibiotics to clear up the infection. I was getting a new and different bacteria almost every time. Things were at their worst at the end of 2012 when I thought I just could not take it anymore. Even as this year began, I got 2 infections in January and February. I looked at my doctor through my tears back in February and begged "is there NOTHING to be done?" He held my hand and tried his best to reassure me that he was going to work doubly hard at finding an answer. 

Lucky for me, I have a doctor that never gives up and will follow up and do research after you leave his office. The very next day, he had his nurse call me with a new plan. The timing, I believe, was a stroke of fate. I had just finished taking my last dose of an antibiotic for the most recent infection. The nurse gave me my new instructions. My doctor was prescribing a new prophylactic anti-infective that I was to start immediately twice a day. I was to continue to self-catheterize daily (I have severe retention which contributes to infections as we all know) but he wanted me to actually do it more often, not less. I was told that he understood it seemed counter intuitive, since catheterizing can often be the cause of infections. In fact, I thought that's why I was getting them, but after all this time, my doctor believed it was more related to my retention than the self-cathing, so my instructions were to self-cath at least 3 times a day, but he would prefer 5 times a day. Then I began vaginal estrogen, which can also help prevent infections, and I was to do that twice a week. In addition, we were continuing my weekly instillations (which help ME a lot) but he was adding gentamicin to my cocktail to help prevent infection as well. So we had a four pronged approach to try to get this under control.

So on February 5th I began this treatment regimen. And the good news is I am just a few weeks short of hitting the 6 month mark infection free! The plan is working and I am beyond grateful! My IC is challenging enough all by itself, but with this added problem, it was making life so much more miserable, and I would not have thought that possible.

Six months infection free after a 4+ year battle is a huge accomplishment. I am so pleased and relieved that we were able to find a plan that finally beat back the bacteria nightmare I was in!

This is a lesson in really, really never giving up. As hard as it was when I was going through it to handle, I never lost faith in my doctor and he never gave up trying to find a way to help me. Persistence has paid off big time. I know that it's possible someday I could get another infection; it's always a possibility for patients who have suffered from chronic UTI's to get them again. But we have broken the cycle for now and I have been grateful for each and every day this year that I know I don't have another infection. Now I count the days on the calendar in a positive way; how many days is it that I have NOT had an infection. 

I'm actually optimistic and my goal is to get through the rest of the year without an infection. If I can do that, I will truly have something to celebrate! 

The Good News Is - I am only 2 weeks away from hitting the 6 month mark being infection free! What a gift and I don't take it for granted! Thanks to my fantastic medical team that fought for me and never gave up!

Thursday, July 18, 2013


Often, one of the first things newly diagnosed IC patients have a tendency to do is drastically reduce their fluid/water intake thinking it will help them pee less. This is a BIG mistake and something that some of us have to work at to get it right. My doctor and I call it my "daily lab experiment".

The reason this is a bad idea for IC patients, as some of us have learned, is that the less water you drink, the more concentrated your urine becomes. If your urine is very concentrated it will cause an increase in your pain which can lead to still having the sensation that you have to "go" but because you don't have a sufficient amount of urine for your bladder to expel, we end up trying to force out these small amounts. That's not good because doing that can just make matters worse by contributing to pelvic floor dysfunction. If you are drinking the right amount of water, your urine will be more dilute and thus reduce the level of pain when you do have urine in your bladder and your bladder will have enough urine in it to function properly and allow you to void naturally without trying to force it out. It can also aid in flushing out anything you may have consumed that is irritating your bladder.

For the majority of IC patients, you do not need to drink gallons of water but you do need to be drinking it throughout the day. The surefire way to tell if you are taking in enough water is if your urine is clear or nearly clear (pale yellow). If it looks dark or very gold, you are not getting enough fluids and should increase your intake.

So how much is enough? You do not need to drink gallons of water (I'm not talking about patients with other issues like kidney problems who may need more than a patient with IC). But you do need to be drinking throughout the day. Buy a refillable water bottle (mine holds 24 oz. of water) and sip from it all day long. I usually drink my entire bottle by late afternoon and refill it but never finish it after it's been refilled. This seems to be just the right amount for me.  For some of us who never drank enough water before we got IC, this can be an effort to re-train ourselves. It was for me. I was a Diet Coke "addict" and when I was diagnosed with IC I knew I had to give that up and start drinking water. That was a challenge for me. I didn't quit "cold turkey" but did it gradually and by doing so, I never suffered caffeine withdrawal. I got a water bottle and began working to drink my water. In the beginning I was drinking way more than was necessary and that wasn't good either. It took talking to my doctor and playing around with the amount before I figured out the right amount for me. It's worth the work if you've not been a water drinker. It's healthier for you anyway, and it definitely helps with your IC. 

If you are experiencing this extreme heat as we are here in Illinois, then it may be appropriate to increase your water intake, especially if you are able to exercise outside or are just spending time outdoors. Even healthy people are instructed to stay hydrated in this heat. It's even more important for IC patients. A key that medical professionals use when reminding people to stay well hydrated if you are outdoors in this extreme heat is, if you wait to drink until you are thirsty, it's too late. So if you are still able to exercise, and are doing so outside in this heat, make sure you are taking water with you and drinking it before you feel thirsty!

The point is, obviously to say well hydrated. It's just good health regardless. But get used to carrying a water bottle with you; I take mine everywhere I go most of the time (it's at least in my car if I don't want to carry into wherever I may be going). If there are other beverages you can drink that don't bother your bladder, those can count toward your fluid intake. If there are a few rare IC patients that can still drink beverages with caffeine, those won't count because caffeine is dehydrating, so you must compensate and not count those as part of your fluid intake. Most IC patients have had to give up anything with caffeine so this isn't a consideration, but just in case we have a few rare individuals who can still drink a little caffeine, remember to keep your water bottle with you and sip from it throughout the day.

I just wanted to touch on a subject that may be something new IC patients need a little help with. If you'e an old hand at this, you probably already know this. But it never hurts to remind us of some of the small things that can be so important in our self-care and doing all we can to help ourselves manage our IC symptoms.

So get used to it; water is an important part of your IC life! Drink up! You'll be glad you did!

Wednesday, July 17, 2013


Normally Sunday is my day for Inspirational Quote of the Day, but my Saturday post was put up late so I just decided to let it stand for the weekend. So, today I have to go to the doctor and will be out for the better part of the day, so I am making Wednesday my "Inspirational Quote for the Day" day!

I really liked this one that I found and hope you do as well; it really seemed to strike a chord with me. I hope if you follow my Blog you find these weekly quotes as inspiring as I do. I like to have things like this to think about, to inspire me, to help me in difficult times. I hope it does the same for you. This is a good one to keep nearby for positive affirmation and to remember to never give up!

“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, 'cause it's gonna have a long day doing it.” 

Tuesday, July 16, 2013


As so many of us know, we are often being faced with the difficult decision about whether or not we can actually afford to pay for a treatment that might help us with our IC because our insurance company doesn't want to cover said treatment, deems it too "experimental" or just classifies it at a top tier treatment with the most expensive co-pay or even worse, doesn't cover it at all!

Well, you don't have to just take this sitting down. First, there are ways to appeal these decisions through the insurance companies, having your doctor write a letter of "medical necessity". If that doesn't work, then you can turn to your state for help.

Did you know that many states offer assistance in dealing with insurance companies in appealing these types of issues? They do. So if you've been denied coverage for something, go to this website and contact the agency in your state and get help to see if you can win your appeal for coverage.

You can also contact your Congressional Representative by calling their local office (not DC) and ask to speak with someone in Constituent Services. Explain what the situation is and ask if they can help you or what services might be available for you.

It gets frustrating dealing with insurance companies; I know I just about lost my mind in 2011 fighting with my insurance company to pay for my surgery. I WON, I believe in large part, because I never gave up calling them, documenting everything and in general, making a pain of myself until they paid up! Often insurance companies have an "unwritten" policy to simply deny claims because so many people don't know enough to fight that denial because they don't understand their own insurance coverage and what is and isn't covered. KNOW YOUR COVERAGE! Learn to be your own advocate. Never give up fighting. There are changes every year to your coverage; don't assume what was covered last year is covered this year. Make sure you understand your Drug Formulary; read it. The Drug Formulary is one of the places insurance companies like to make changes to every single year. When I get mine at the start of the new year, I go through it with a fine tooth comb to see if what I am taking is still covered or if they changed the coverage or tier it's in. When my doctor(s) prescribe medications, I never just get them filled before I check to see what my coverage on that drug is. Recently, my doctor prescribed a medication for me and when I got home I called my pharmacy and found out the medication was way more expensive than I could afford. So I stepped in, asked the pharmacy to help me figure out what, if any, was a less expensive alternative. There was and I called my doctor's office and we switched the prescription.

We need to take total control of our health care. Understanding your health insurance is a huge part of this. So many patients don't understand what is covered and this is key to managing your own care.

So, take some time, read your insurance policy; I've read mine and I refer back to it often to make sure I understand something when I have a question.

Use the resource above from your state if you need to fight a decision about denying coverage for a treatment/medication. 

Taking control, knowing what your benefits are, can help us all receive better outcomes and save us lots of frustration. Don't just take no for answer; you can sometimes beat them if you just try. Most people just give up out of lack of understanding and frustration; the insurance companies count on this. Don't give in; keep fighting! It's worth the effort!

Saturday, July 13, 2013


As many of us know, participating in online support, such as the excellent ICA Facebook page, can provide us all with wonderful sources of encouragement, support and information sharing. This is a wonderful thing and one of the "good" things that the Internet has brought us.

The challenge about this arises when people share their experiences and disagreements about treatments come up. Often these disagreements can create a very contentious situation and arguments can ensue. This bothers me.

I believe it is very important that we all share our experiences, positive and negative, in our personal journeys with IC. What worries me is when people talk in "absolutes". When it comes to IC, nothing is absolute. If a treatment failed that you tried, gave you negative side effects that doesn't make that treatment invaluable or not worth trying for others. As we all know too well, no two IC patients are alike and none of us responds the same way to any given treatment. Heck, that can be said regardless of the illness. No two people respond to medical treatments the same way regardless of what it is. This must be taken into consideration when discussing options with your doctor and listening to the experiences of others.

I think it's very important to present pros and cons when it comes to our personal experiences, but caution should be used when relating your personal experience with a treatment that very well might work for someone else were it not for some very scary story someone told about a bad experience. I understand the need to feel as though we must warn others that they might experience the same thing. But I believe it's prudent to tell others what our experience was without scaring them to death.

I have had IC for 12 years. I have 2 InterStim and treat my pain with bladder instillations. I can't take any oral pain medications whatsoever because I get severe side effects from them. That said, I would never tell another patient they are not worth trying, but to use caution, talk about the pros and cons of them with their doctor and be aware that possible side effects can occur. 

I believe this is the approach that should be used when we talk about our experiences with treatments with which we have had success or failure. 

I think it is a disservice to those in the IC community to denigrate a treatment to the point of scaring someone away from trying what is a legitimate therapy option, just as much as it is a disservice to overstate what a therapy is capable of doing. 

The point I want to make is this. Take personal responsibility for your own health care plan. Listen to the information others share with you, do your own research, bring notes to discuss with your doctor. ASK QUESTIONS when you are with your doctor! This is how we make informed decisions about what treatment options we want to try. 

Because what works for me, or anyone else, may not work for you. And what works for you, or anyone else, may not work for me. We are all different and no two IC patients are alike!

If you want excellent resources to help you research treatment options, go to the ICA website and spend time drilling down and reading everything on there. It is filled with current and excellent information on IC. Also, one resource I believe every single IC patient should have at their finger tips is the AUA Guidelines on the Diagnosis & Treatment of IC. Read them, print them out, go over them and use them as a tool to discuss your treatment options with your doctor. Don't ever hesitate to get a second opinion or disagree with your doctor! Learn to be your own best advocate. This is what will get you the best care possible and help you find the right treatments for YOU!

Another excellent resource for excellent medical information is the ICA's YouTube Channel. Go there and take the time to watch the videos; there's a lot to learn there!

Also, if you have been unable to watch the online sessions from the Patient Forum that was held recently in Philadelphia, I encourage you to do so. Lots of good information can be found watching those videos as well!

Friday, July 12, 2013


Tis the season where it seems everyone is going someplace on a vacation. School is out for the Summer and so families of course take vacations during this time. Plus it's the season of warm weather and people are drawn to beaches, mountains and the like. Friends and family and Facebook friends are all taking vacations and posting pictures of their wonderful adventures.

I just can't travel anymore; at least for now. For me, the obstacles are too many and it's more than I can handle logistically, physically, mentally and every way imaginable. My gal pal asked me why that was the other day when we were talking. So explained what my personal IC obstacles are:
  • Having to self-catheterize 5 times a day means shipping all those supplies to whatever location I would be going to. That's a BIG box of stuff! Then there's the issue of just dealing with that while not in my own home. 
  • Driving as we all know is a challenge, especially if you are going to be in the car for days at a time to reach your destination. Sitting in a car, finding bathrooms on the road are all issues we all deal with. I know there are ways to problem solve this (bathroom locator apps; portable travel potties, etc) but the idea of a road trip just is not something I feel prepared to take on right now.
  • Flying presents its own challenges as I have 2 InterStim so I always need to have a pat down going through security; not that big a deal. But what puts me off most is getting on an airplane and then sitting on the tarmac for long periods of time because once you push back from the gate, they will not allow you to get up to use the lavatories. All my friends and family that have flown recently have had this happen, sitting on the plane, stuck on the tarmac lined up to take off for 45 minutes, 1 hour and 2 hours. That's a problem for me. I could ask my doctor to put in a Foley catheter, but that's another whole can of worms regarding going through security, emptying the bag while traveling, being able to take it out once I arrive and put another one in for the return trip home. It's just too much.
  • Upon arrival at said destination, sightseeing, laying on a beach all are challenges. It's very difficult to self-catheterize when I'm not at home and there aren't always bathrooms where you might want to go. Again, it's an issue. If I can't self-cath while I'm out and about, then I spend the whole time looking for bathrooms. No fun.
  • Just the physical toll traveling takes on most IC patients, and me in particular, is very high. Heck, on days I go to the doctor and I'm out for half a day, I come home exhausted and collapse. The stress and physical toll traveling would put on my body, is again a major challenge for me.
These are just some of the challenges I would have to deal with if I wanted to travel. I think there are many IC patients that have many, if not more, of these issues. Heck, going the movies isn't even manageable for me, so taking a trip is just too overwhelming. 

Yet, many IC patients have posted on Facebook about some wonderful vacation trips they are on or planning! Some have said it has been very difficult and are dealing with added pain and flares but are still glad they went. I AM IMPRESSED! When I see IC patients planning trips, working to problem solve how to go about taking their vacations, I am in awe of these people! They are to be commended and it gives me inspiration that if an opportunity comes up in the future, maybe I could find a way to problem solve my way to a vacation. Right now, for me, is not the time, but I have hope that maybe I too could take a vacation in the future. I will hold this in the back of my mind for the future. Remember how inspired I am by the IC patients that have not let their IC stop them! 

There is even a greater message to take away from those IC patients that just go for it and take a much needed vacation. If you can problem solve your way through all the challenges that traveling puts in your path, then think of all the other challenges we face that we can use these same "tools" to overcome. If you could do it for your vacation, you can do it for other things in your life that are important to you.

I am Impressed and Inspired by all of you that are not letting your IC stop you from enjoying a nice vacation! Happy Summer to everyone, no matter what you do with it!

"Before IC"
Vacation to Barbados 

Wednesday, July 10, 2013


Today I am just going to write about various thoughts that have been running through my head and not specifically one thing exactly. As the title says, these are the "Thoughts, Ruminations and Ponderings of an IC Patient."

Sometimes I struggle with the challenge of my Blog on my Journey with IC. I wanted so badly to write about IC, recognize that it is a struggle for us all but try to focus on my Blog being a place of support, encouragement and positivity too. Sometimes I get my own version of "writer's block". What should I say today? I don't want to repeat myself or make those of you who read this Blog feel you are getting nothing out of it, so it's important to me that I post something useful, no matter how small. 

Today I have been thinking about what I should write; should I even try today. Then it hit me. This is also part of dealing with IC. One of the things I talked about yesterday with my psychologist was the feeling that being on Disability tends to take a mental toll on me; I believe it does for all people on Disability. I know better, but there is still part of me that feels I should be doing SOMETHING. I still feel "guilty" because I am not working. I thought I had worked through a lot of those feelings, but they are still there - kind of lurking in the background - and maybe always will be. It is something to continue working on. I have my ups and downs and it impacts my desire to put effort into things: my Blog, trying to walk, working on my diet. I feel these things overwhelm me sometimes. That the effort it takes to do any or all of them is difficult. I think this is true for many IC patients. We all find coping and dealing with everyday responsibilities, or even the lack thereof, to be an emotional struggle.

I talk a lot in therapy about how to cope with boredom. This Blog in and of itself is a means to bypass boredom, try to feel useful and give something back to everyone struggling with the same issues. For some, it's trying to "live" with their IC, continue to work, manage families and spouses. For others, like me, it's having had to sell my home that I worked my whole life to finally get, and move in with my parents. Yes, it's a blessing to have them healthy and able to take me in. But nonetheless, it has its own challenges.

So it dawned on me, that the very thing I was struggling with was something that maybe all IC patients could identify with. I know working with my therapist is helping me a lot. I could not cope the way I do without working with her. But it is a work in progress. 

I have a wonderfully supportive family and a small, very close group of friends that support me and stay in touch. I have my IC friends that do the same and I feel like we all watch out for each other. 

Yesterday I had my weekly instillation appointment and that was much needed. I had to skip the previous week due to many conflicts and skipping a week is no fun for me. So I am back on schedule and that helps a lot. I don't know what I would do without them. I know they don't work for everyone but for me, they are my "magic bullet". 

I think we all fight the urge to just "quit" and give in to these times when we struggle with our IC and the limitations it creates. But it's what we choose to do about those feelings that's important. I have reached the point where I can stop, think about it and sort of walk myself through what I am feeling and how to cope with those feelings. Therapy is making a difference in my life.

Do whatever helps you cope. Meditation, Yoga, listening to music, watching your favorite movie on DVD or reading a good book. Take a bath if that relaxes you. Learn to "listen" to these feelings you may be having; it takes practice. But if you work on it, you can find ways to take your mind off the negative emotions and set them aside and work on re-focusing on positive ones. I also like using Positive Affirmations. Find one you like, put it on a sticky note or something and put it in various places where you will see it throughout the day. 

Here's a link to a good site on using Positive Affirmations for people struggling with illness.

Sunday, July 7, 2013


Today's quote is about friendship, which his on my mind today. So often, we IC patients talk about losing friends and loved ones after becoming sick. It is a challenge that I think each and every one of us has dealt with to some degree. It is so important, therefore, to recognize and thank the friends and loved ones who stick by us. A few of my dearest friends demonstrated their true friendship and love for me yesterday by driving two hours to spend time with me so we could celebrate those of us who have birthdays in June and July together. It was the best evening I could have wished for and I am grateful they have stuck by me and go out of their way to spend time with me and stay in touch!

So this is for all our friends and loved ones that have stuck by us! THANK YOU!


"Now & Forever"
Carole King

This song was written and performed by Carole King
for the movie "A League of Their Own"
Truly a Song About Friendship!

Friday, July 5, 2013


You know how in the Summer, television goes in to Rerun Season? Well, I'm not really going to just put up repeats of previous Posts, but I am going to take today, a holiday weekend, to make a suggestion. If you are new to my Blog - and even if you're not - scroll down to the bottom of the page and go the "Blog Archive" section. Click on the various dates and browse through topics I've written about before. See if there is something you might not have seen before and might find interesting. Take some time to check out the links to my YouTube channel and check out some of my videos.

I would love to have more people click the "Join This Site" button right above the Blog Archive to I can see how many are really interested in reading what I have to say. I also have links to other Blogs that I'm following that you also might find interesting. Check them out as well.

You can post comments directly on the Blog too. At the bottom of each Blog entry is a little link that, if there are no comments, the link says "No Comments". Just click on it and a box will pop open and you can comment directly to the Blog.  You won't see it until I get notified, but I will authorize the comment and I will always reply to it on the Blog as well.

This is meant to be interactive, not just me talking to you. I'd love feedback, comments, an exchange of ideas. I'd love to hear from you.

Join me on our IC Journey together!

Thursday, July 4, 2013


First, for those interested, my upper endoscopy yesterday went well. There has been no change in my hiatal hernia and it does not need repair (YAY!). The doctor said that likely the reason I was suffering so much was that I needed to be on some good/strong medication and I am now, so all should go well. I was pretty wiped out yesterday but for me, that's a good thing after a procedure. So all will be well. At least that's one box I can check off and not worry about!

I want to wish everyone a very Happy 4th of July. I hope everyone has a safe and enjoyable weekend! I know many of us celebrate with family gatherings that revolve around food and this becomes a source of stress for many IC patients that can't enjoy some of the traditional holiday foods they used to (what? no ketchup on a hamburger?) 

I hope everyone plans ahead and doesn't let things like this put a damper on any celebrations. Bring or prepare your own food that you can have and just eat what you like that's on your "safe"list! If you were really on the ball, maybe you've purchased a few of the IC friendly cook books and come up with some great food ideas for any celebrations you are going to or hosting. I hope so!

Most of all, don't let FOOD ruin or dampen any family and friend gatherings you are planning on participating in. I'm a food lover, so I know how hard it is to give things up. I am constantly fighting a battle with my weight too so clearly I struggle with eliminating foods from my diet! But the point is to BE with friends and family and enjoy good company and have a good time. We all focus too much on food and letting that ruin what could and should be a fun time. When you put it in perspective, food is just not worth allowing to have such an impact on how we enjoy being with those we love, no matter the celebration.

For anyone that doesn't have it, I'll post a link to the "Food List" that might help you if you haven't read through it yet. Also, be sure to read the link on the approach to the food list. As you will read, there is no hard and fast rule about this food is 100% "Safe" for ALL IC patients or the other way around. It's meant to be a guide so use caution.

For some, taking Prelief before eating certain foods can help you enjoy some foods that might usually bother you without the Prelief. But don't go crazy overboard. Everything in moderation. Pick your "treats" carefully and savor them. 

You also don't want to physically overdo it so that you set yourself up for a flare the next day. Don't be uncomfortable if you have to sit down in a chair; you don't have to win the prize for biggest social butterfly. Do a little mingling as you feel up to it, but take breaks and take it easy. Friends will find you if you choose to sit where the "action is". Bring a cushion if you need to. Planning ahead can allow you to enjoy yourself today and all weekend. So if you are planning on partying, go ahead, have fun. Just plan ahead for your food, comfort and what it will take to let you participate.