Wednesday, January 30, 2013


We all talk about how challenging it is for many of us as we struggle with our symptoms and finding the right treatment(s) options to help us. One of the things that I have struggled with is this never giving up attitude. I have felt frustrated, angry and emotional and felt that nothing is working and have often felt like just plain giving up. But one of the things that really was another "ah ha" moment was my appointment with my doctor yesterday. 

My doctor never gives up!

I am so grateful to have a doctor that has NEVER given up on me, when I know that others would have long ago. My IC issues alone are complex and difficult to treat, but these chronic UTI's I've been dealing with for the last 3 years has frustrated both me and my doctor. Although he was the first to admit that he knows all too well that his frustration is not comparable to mine.

We had a long talk yesterday about my situation with the UTI's and through my tears, I told him I understood that medicine doesn't always have an answer but that I had a hard time accepting that there was NOTHING we could do to help me get rid of these UTI's. He gave me a hug and said he was not giving up; that he would keep researching, talking to other doctors and doing everything he could to help me. 

There's something to be learned from a doctor who has that attitude. If my doctor won't give up, then how can I? I must keep following his recommendations, be vigilant and never give up. 

So, I have to keep self-catheterizing and be vigilant. I must keep my bladder as empty as possible as much as possible, since my retention is a leading cause of infections. I am using the vaginal estrogen cream, which also helps with preventing infections (in addition to helping with my vaginal/vulvar atrophy) and I have a catheter that I really like that is supposed to help with preventing infection. Here's a link to a little video about this catheter. I love them!

Well, my doctor really proved he was REALLY listening to me yesterday, which is so important. This morning my phone rings and it's my doctor's nurse. He wants to prescribe a medication for me to take prophylactically every day, twice a day for 90 days. This drug belongs to the family of medicines called anti-infectives. It is used to help prevent infections of the urinary tract. While dosing is always up to the physician based on the patient's situation, often the dose is 1 milligram. However, my doctor has prescribed 1 GRAM twice a day for 90 days! That's a huge increase in dosing over what might normally be prescribed, but I am excited that he wants to really get aggressive and attack this. I like this idea and I am on board. 

The most impressive thing to me is that after my doctor walked out of the exam room, he was obviously thinking about me and my problem. We often wonder if we're just forgotten the minute they walk out the door. My doctor kept thinking about my situation, clearly did what he said he would and not in two weeks, but right away.

He never gives up on me and this is something that I am so grateful for. But it has taught me that I too must never give up on myself or in fighting to find ways to help myself. I think this is something we all could work on. Keep working with your doctor, keep trying everything, keep an open mind and NEVER GIVE UP! 

I don't know if this will work or not. But I am pleased to have a new option to try and I am really excited to give it my best shot.

So here's to hope and NEVER GIVING UP!

Monday, January 28, 2013


Today I am taking it easy and just restin' (Monty Python fans will understand that reference). I have an appointment tomorrow with my IC doctor and it's time to evaluate and discuss my situation. We've been doing a series of instillations with Gentamicin to see if that would help with the UTI's, I've been using antibiotic coated catheters for the same reason. Nothing has helped and I've already had 2 UTI's back to back (less than 36 hours from the finish of one antibiotic to symptoms returning of another). I had 17 UTI's last year and this year is not off to a good start at all!

I just finished taking my last dose of Macrobid last Thursday (only 4 days ago) and I knew yesterday morning the symptoms of another UTI are rearing their ugly head. It is so frustrating and I know we have tried every single thing there is to try but nothing is helping.

I am tired today and knowing that I have to go out tomorrow, I am really taking it easy, curled up with my heating pad and blankie. It's nasty outside though not as cold, but gray and dank and gloomy. That never helps one's mood.

So I am working on taking my own advice and doing things that make me happy; music, talking with friends and I had a nice little nap too. So, if you're having one of those days, do what you need to in order to get through it. Take care of yourself and don't feel guilty about it! And if anyone asks why you're just laying on the couch, just tell them "I'm just restin'!"

Friday, January 25, 2013


So as you know if you read yesterday's post, I had multiple medical appointments yesterday. Since I live a good distance from where all my doctors are, I like to book multiple appointments on the same day so I don't have to go down multiple times in the same week. If I find I have one appointment in a week, then discover it's time to see another doctor, I'll go ahead and try to work them around each other.  

I often schedule my IC doctor and my psychologist on the same day, as they are not only in the same building, but their offices are right next to each other. So that always works out well. 

So yesterday, I had managed to schedule 3 different appointments for the same day and timed them pretty well. But at the end of the day, I realized I had spent the entire day basically naked and it made me laugh. 

- My first appointment was at my IC doctor's office with his P.A. for an instillation - naked from the waist down.

- My second appointment was for my mammogram - naked from the waist up.

- My third appointment was with my regular gynecologist for my annual check up - totally naked!

I just kept taking clothes on an off all day long! And next week I go see my IC doctor and then I'll be naked from the waist down - again!

It's really amazing when you've been sick with a chronic disease for so long that we get to the point where getting naked doesn't even phase us anymore! I really get a kick out of the mammogram technologist apologizing for the pain; I look at her and say "honey, this doesn't even make it on my list of "painful" things I've got going on!"

I think this is what makes us all real IC Warriors. We no longer worry about spending the day naked, mammograms are no big deal and being poked and prodded all day long is just par for the course. I really do believe that having to deal with all the exams, tests, surgeries has made us stronger than we give ourselves credit for. When we get to the point where we can actually say something is no big deal, or just simply feel comfortable speaking up for ourselves if it isn't, then we have learned to take control of our own health care and that's a good thing!

Of course, after spending the day naked, I really feel like someone owes me a nice dinner at least (LOL!).

Thursday, January 24, 2013


Today is one of those days where I booked a series of appointments all on the same day, sort of back to back. My doctors, as many of yours are as well, are over an hour away, so I prefer to try to schedule appointments on the same day when possible.

So today, I have an appointment with the P.A. at my IC doctor's office for an instillation. When that is done, I go get my annual mammogram and after that I have my annual appointment with my regular gynecologist for my PAP smear and exam. Whew! We will be gone basically the entire day and I will be worn out when it's over. But I find I'd much rather put it all in one day that make that drive multiple times in the same week. For me, this works best.

So, off to the doctors I go, once again. Gonna get checked out all over. I like to think of these as, when I see just one doctor, it's like taking your car in for an oil change. When I have all these appointments that kind of check me out all over, it's like taking your car in for a big time tune-up! They're really going to be checking under my hood, as they say (LOL!)

My wonderful mother will be driving me and if it all works out timing wise, we'll be able to get a little lunch while there. Long day ahead, but then tomorrow I get to rest!

It's extremely cold here in the Chicago area; it's only 6 degrees right now with a wind chill of -14! Gotta love those days when you have to go out in THAT kind of weather!!

I hope everyone has as good a day as possible. Take care of yourselves and if, like me, you're in this deep freeze, stay warm!

Monday, January 21, 2013


I know I have written before about various techniques we can try to use to help us cope with our IC struggles. But last evening I took my own advice and put my headphones on, opened up my iTunes and closed my eyes and simply listened to music for nearly two hours!

I have always loved music; it's in my family and we all enjoy all types of music. It has always made me happy and joyful and while listening to music last night, I discovered it calmed me, relaxed me, put me in a much better mental state and I actually did forget about my pain to a good degree.

My therapist is always telling me that your brain cannot be sad and happy at the same time; i.e. you cannot cry if you are laughing. This is so true! While listening to music, I was transported in a way that just made me smile, happy and it put me in a much better frame of mind than I was previously. I need to do this more often!

I can honestly say that this was a real "ah ha" moment. I found myself "chair dancing" to the music, snapping my fingers and all those fun things we find our bodies doing in response to music we love! It was such fun!

Music has the ability to do so much no matter what. It can inspire us, it can make us happy, it can move us to tears, it can make us feel and just so much more! If you find you are feeling down in the dumps and struggling and just sitting there miserable, I strongly suggest you listen to your favorite music whatever that may be. Some love classical, some love rock or pop or jazz. Whatever your favorite music is, listen to it. Close your eyes and let it wash over you. It can have an amazing impact on each of us and can truly be healing in so many ways!

I hope you find some music that makes you happy and transports you to a better place. So here's to music - it makes me happy! And that is never a bad thing! 

One of my all time favorite songs that makes me so happy just to listen to it; enjoy!

"Fly Me to the Moon" - Frank Sinatra

Sunday, January 20, 2013


"Some Days There Won't Be a Song in Your Heart. Sing Anyway."
- Emory Austin

"Anyway" - Martina McBride

Saturday, January 19, 2013


Below is a link to an earlier post on my Blog entitled "Editorial" where I wrote about many of us being the victim of attacks on FB by supposed FB "friends" with IC who turn on us and make nasty remarks and so forth.

This situation has come up again just this week with me and a few of my IC FB friends, who are being talked about in an unkind and, more important, UNTRUTHFUL manner by someone we only tried to help but is not capable of being helped. It is extremely hurtful and upsetting to have someone spread lies or twist facts, but there is not really anything to be done. 

I hope people will read this previous Blog post and when you see posts from anyone on FB where they are talking negatively (or worse) about others, think twice before you just accept those comments as absolute truths. Even if you have a falling out with someone, it is uncalled for to take that online and tell stories that are not true or say unkind things about people. 

It's really very simple. Let's all treat each other the way we want to be treated. It should be possible to express our opinions in an adult, polite manner and disagree with each other without it degenerating into attacks on others. Let's try to support each other and not tear each other down! 

Friday, January 18, 2013


Sometimes I just hate being right! I got the call from my doctor's office and, yup, once again I have another UTI! I didn't even go 36 hours in between the last infection and this one! It's the second one already just since the beginning of the year. I had 17 last year and I'm off to a roaring start in 2013! 

I just ordered some D-Mannose along with the Critical Care Probiotic I am taking. I have not tried the D-Mannose before, but am willing to give it a try. I've been taking the high dose, critical care Probiotic for 3 months and it has not yet helped, but I am committed to sticking with it for at least 6 months. Trying the D-Mannose seems like it's at least worth trying.

My doctor's office has also given me a box of the anti-bacterial catheters to try, so I'm hoping they prove helpful too; we'll see.

Every time I go to the doctor's office and tell them I need them to check for an infection, they are so nice and try to give me a pep talk and say that maybe this time it won't show positive. Unfortunately, I haven't been wrong once. I KNOW when I have a UTI. One of the nurses said to me recently "Why are you always right; your crystal ball never seems to be wrong."

I wish I was wrong! But this seems a battle I am destined to have to fight for some time. I see my doctor in two weeks and once again I'll discuss this with him and see if there is anything else we can do. In the  meantime, I'll start my antibiotics, wait for the supplements to be delivered and keep on trying to fight to stay positive. It's been an ongoing battle for quite some time. I must stay strong and keep fighting even though I have my moments. It's not easy, and it's a work in progress, but I'll keep working on it.

"Be Miserable, or Motivate Yourself.
Whatever Has to be Done, It's Always Your Choice."
- Wayne Dyer

Thursday, January 17, 2013


I thought I would write about what I call "The Disability Dilemma" today. So many of us struggling with IC battle to keep working for as long as we can. Every IC patient I know wants to keep working and making a contribution and feeling fulfilled. But for many, no matter how hard we try to keep working, it just becomes evident that it is going to be impossible. 

I faced this dilemma almost four years ago. I had been battling my IC at that point for 7 years and thanks to having an amazing boss, I was managing to hold it together and continue working. If you really want to continue working, it is imperative you do everything you can to protect your job. Most IC patients try to keep working without telling their employer about their medical condition, but find themselves having to use all their sick time and vacation time to take time off from work and if your employer doesn't understand why, it is going to make them think you're just slacking off. If you want to keep working, you MUST communicate with your employer about your medical condition and formally request a "Reasonable Accommodation". For more on this topic, check out the ICA's website page on "Talking with Your Employer" and I'll include a link here.

But, if you reach the difficult decision that you cannot continue to work and need to apply for Disability, I wanted to share some of what I learned going through this challenging process.

It is not easy to get approval for Social Security disability, not just for IC patients. First, know what benefits your employer offers! Many people have lost out on benefits their company offered because they were not aware they offered Short Term and/or Long Term Disability. So find out what your benefits are before you do anything !

I began my process by going on Short Term Disability through my employer. At first they would only approve me in small increments like 3 weeks at a time. Finally my doctor called them and I was approved for the maximum for STD, which for me was 26 weeks. My doctor really helped in this situation. 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 if you have this benefit, you need to know that the private LTD insurance carrier will 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. In other words, say you get approved for LTD from work and that check is $2000 per month. Then let’s say you get approval for SSDI and they’re paying you $1500 per month, the private LTD carrier will still pay you, but now they only have to pay you $500 per month – the difference between the SSDI payment and what the private LTD payment had been. But it's more money if you have those benefits than you would get with just SSDI alone, so before you go and resign your job, just make sure you know what your benefits are!

Filing your initial claim for SSDI is a daunting process and if you can get an attorney to help you file your initial claim, then I recommend it. Unfortunately, the vast majority of Disability Attorneys won't help you until you file your claim, get denied (they all assume that will happen and based on statistics it does most times), then they tell you to call them back and they will help with your appeal. 

It is your job AND your attorney's job to prove you are disabled.  As I said, I am on Disability due to my IC. This is very frustrating for so many IC patients. I was denied once 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 11+ years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal.

So if you have been denied, then you really need an attorney to help you with your appeal. They do not charge unless they win your case, so it won’t cost you anything. I worked with a non-attorney disability claims representative and not an attorney and he helped me right from the start. He was excellent and I believe an important contributor to helping me. My first claim was denied and we had to file an appeal. I was then approved for my benefits. Some people go through multiple appeals. 

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 MANY problems that impact you then that can help make your case. 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) can be very important. A letter for you from your doctor, written in the format accepted by Social Security that explains why your doctor considers you to be disabled is very important. I would encourage you to 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. There is a sample letter in the workbook and it is very specific as to how it should be worded. Here's a link.  If you can't afford the $40, ask your attorney to purchase it for you and they can take the $40 out of your final settlement. It can also help the attorney if they are not familiar with IC.

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.

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.

Go to the ICA website section on Disability; make sure you download the Social Security Policy Interpretation Ruling on IC if you didn’t include this before. 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. This is VERY IMPORTANT!!

Here’s a link to the Social Security website where you can read up on the Appeals process and what you need to do next. Be sure to click on the link on this page called “How Many Appeals Levels Are There?” This will explain how you proceed going forward.

It's hard, but keep fighting but don't give up. Calling your Congressman is definitely a good thing to do if your appeal is stalled or nothing is happening. Call their LOCAL office, NOT DC. Ask to speak with someone in Constituent Services and explain your situation and ask what services are available in your community. Also, often he can help get your hearing date pushed up, so this is definitely an avenue worth pursuing if necessary.

Going on Disability is always a Dilemma for those who are faced with making that decision. No one WANTS to go on Disability; it's not vacation and it's not retirement! But for some, it's absolutely necessary and well worth fighting for. If this is your situation, I want to encourage you to do what is best for you, keep fighting and never give up!

Let me know if you have any questions.

Wednesday, January 16, 2013


As those of you who follow my Blog know, I have been battling chronic and repeated UTI's for quite a long time and apparently it's not going to stop anytime soon. I just completed a round of antibiotics 2 days ago and it appears I am already well on my way to having another infection already! I didn't even go 2 days without symptoms returning - sheesh! 

I had an appointment today for an instillation so I told the P.A. that I suspected another UTI was brewing - I am so familiar with my symptoms and in 3 years when I have suspected a UTI, I have been right every single time. So they took a urine culture and it will go out to the lab and I will get the results on Friday. The quick test was positive for Leukacytes so as we all know that is a classic indicator of an infection brewing. So we shall wait for the culture and go from there - again!

In addition to fighting this, my favorite nurse at my doctor's office has left for a better opportunity and so I met the office's P.A. and she seems very nice. It's always difficult enough developing comfortable relationships with our doctors and their staff and when you get one so great that you feel is so kind, caring, helpful and really listens, it's difficult when a change in staff happens. It seemed the P.A. had familiarized herself with my chart, which impressed me. She seemed pleasant and kind, so I will give her a chance. She is also going to be trained to do the InterStim since the Nurse Practitioner I loved was the one who did it, so I will have to develop a relationship with this new medical professional. I'm sure it will be fine, but when you are dealing with your IC, associated conditions, and for me these chronic UTI's, having to "break in" a new person is  just one more challenge I could live without. I'm sure all will be fine and I am giving her the benefit of the doubt.

I know we often feel like we are pushing a boulder up a hill and we'll never reach the top. I know I have those feelings. But we must never give up. I know it's hard; I'm struggling right now with fighting the negative emotions. So I'm looking forward to my next therapy session. I really count on them to keep me on an even keel.

So, until I get the culture results and can see my therapist, I must take my own advice and use all the tools at my disposal to help me get through this latest setback. I am curled up with my heating pad, resting and just taking it easy. I need to learn to cut myself some slack more than I do. I think we all need to do this! 

So, I'll keep pushing that boulder up the hill and try never to give up! The uphill battle continues and I continue to fight. I am grateful more than I can say for my family, friends and support system (IC friends too)! Without the love and support they all provide, that boulder would have pushed back down the hill a long time ago!

Tuesday, January 15, 2013


I want to let every single person that reads my Blog know how much it means to me. Many of you have written to me to let me know that you appreciate my Blog and that you feel it helps you. Well, for every single person that has taken the time to express your appreciation for my Blog, each of you has given ME positive support and I am grateful! That feedback means the world to me and touches me deeply.

Sometimes when writing and posting these things, it's hard to know once I put it out into the "ethernet" who is reading it, what anyone thinks and how it is being received. When someone takes the time to give me positive feedback, you should know that positive feedback is also Positive Support! You encourage me and give me a reason to keep doing it.

I think we all need reasons and inspiration to help us keep fighting and keep going. I know I have my days where I really need something to inspire me or get me out of a funk and then I'll hear from an IC friend telling me that I have helped them! It turns everything around for me!

I love my Support Group friends and we support each other at meetings and via FB, texting, phone calls and so forth. If you don't belong to a Support Group, it's something I recommend. If there isn't one in your area, consider starting one. But even if you don't, taking advantage of the support we provide to each other via the ICA's Facebook Page and your IC Friends that you have made online I think is extremely valuable. It's a constant source of amazement to me how having this terrible disease has brought so many perfect strangers together and created friends. I am grateful for each and every one of you that has entered my life and provided encouragement and support to me even as I try to do the same for other IC patients. Isn't the internet fantastic!

So, this is to let anyone who thinks I have helped them that each of you gives me Positive Support, Encouragement and Inspiration. I truly believe that getting IC meant I had to do whatever I could to help others in whatever way I can. So I write this Blog hoping I can have some positive impact, but I get so much more in return, that writing about IC has become a way for me to cope as well.

Thank you to all my IC friends, my family and non-IC friends; you all provide me with such Positive Support it gives me the strength I need to fight through this and keep going!

Sunday, January 13, 2013


"Worrying does not empty tomorrow of it's troubles; it empties today of it's strength."
- Mary Engelbreit

I saw this today and it really resonated with me. I am a worrier and spend way too much time worrying about things out of my control. One of the things having IC has done is make this trait even worse; it's something I'm working on in therapy but I need to work on it more.

I find myself getting upset over things that aren't worth getting upset over and I need to find a way to stop using that negative energy and use what energy I have into coping with the challenges I face every day living with IC. It really does sap you of your energy if you let yourself get all worked up over things you can't control.  This happened to me yesterday I will confess. I have what I consider a major discrepancy in my checking account and it's driving me crazy and to the point of tears. I got mad at family that was only trying to help me and had a total - but unnecessary - breakdown over it. 

My family are my strength and do nothing but encourage and support me. Taking my frustrations out on them was not the way to go and for that I am sorry. I need to work on this more! So I searched for some inspiration today to help me. I re-focused on positive things yesterday that got me out of my funk, made me happy and distracted me from this problem. We will find a way to resolve this issue and me using up all that energy didn't help the situation, didn't help me and certainly was not my finest hour.

But that was yesterday. The good thing about a new day is just that - it's a new day - and we can start over. We can try anew every day to do better than the day before. I want to work on this. So I hope my inspirational quote above helps anyone like me that needs to stop worrying about what we cannot control. Focus on what we can control and use that energy in a more positive way. This is my goal and I know it will be a work in progress, but being aware can sometimes help us improve on issues like this.

I wish everyone a peaceful and restful Sunday!

Wednesday, January 9, 2013


Check out my latest video about some wonderful "Magic Catheters". I hope you find it helpful!

Tuesday, January 8, 2013


This morning my fantastic nephew posted this on his Facebook Page:

"2013 Pay-it-forward!
The first 5 people to comment on this status will receive from me a gift, perhaps a book, baked goods, a candle, or some other surprise! The catch? Those 5 people must make the same offer in their Facebook status. Game on!"

I was so impressed with his wanting to create a positive string of kindness that I told him I would Pay it Forward by posting this on my Blog.

My Goal every day is to Pay it Forward via my work as a Patient Advocate, supporting others both in my local Support Group, online at the ICA Facebook Page and via this Blog as well as Twitter. I hope that if I have helped even one other IC sufferer, then I can consider that I have paid it forward.

I try very hard to pay it forward to the IC Community via my Personal ICA Fundraising projects (where I have raised nearly $2,000 for IC research), talking to other IC patients on the phone and using social media such as Facebook and Twitter and my Blog to provide information and raise awareness. In addition, to show my gratitude to one of my nurses who helps me SO much, I gave her a membership in the ICA.

I'm not using these examples of my attempts at paying it forward to pat myself on the back (really), but as a means of demonstrating everyone can have an impact, no matter how small. Do a kindness for someone, create your own Fundraising Campaign as I have done, become a member of the ICA, give your doctor or nurse an ICA membership if they don't belong already. Start a local support group (the ICA can help with their FREE IC Support Group Leader Toolkit available on their website).

The point is, everyone can find a way to Pay it Forward; whether it's IC related as I choose, or helping a neighbor or doing something with your church. Do a kindness for someone else and who knows how we can impact the world! 

One person CAN make a difference! Pay it Forward!

Dedicated to my Nephew Timothy who inspired me to write this 
 Blog Post today!

Sunday, January 6, 2013


Sometimes we have to be strong when we are at our weakest points. Sometimes we have to be courageous even when it is logical for us to be scared. In life you are going to get knocked down at some points, and the easiest thing to do might be to give in and let your obstacles overcome you. But be strong! In life we are sometimes faced with defeating obstacles that we have no clue of how to defeat or get by. Continue to be brave, and to keep fighting no matter if you feel like you are losing, or if you feel like you have the situation under control.