Saturday, March 30, 2013


As a single woman who lived alone my entire adult life, when I had to sell my home that I worked so hard to get and move in with my parents because of my IC, that was one of the single most difficult things I've had to cope with since getting IC. In fact, that's when I started going to therapy to help me deal with all the changes and the impact IC was having on my life.

I was used to living alone with my cat, going to work and enjoying my place. I saw plenty of my family, as we live close by and we have a lot of family gatherings to celebrate birthdays, anniversaries, graduations and the holidays. So I got lots of family time even when I lived alone. I had a job I loved and close friends and got out in the world to some extent. Never successfully found "Mr. Right" but I was OK with that and enjoyed going home to my own home every day after work. 

One of the biggest challenges for me when I moved home was adjusting to living with my parents. Now, don't get me wrong. I love my parents and I am blessed to have them and that they are healthy and happy to take me in. It may have been the most difficult thing I've had to do, but it was the right thing to do and I am grateful every single day to have a wonderful home and parents who are so caring and take such good care of me.

But whenever people move in together, no matter the circumstances - couples when they get married, roommates in college or when just starting out. No matter how much you love someone, it can be a challenge to adjust to each other's habits and even just having other people around all the time. 

So it took me some work and time to adjust to living with my parents, but before I knew it we settled into our routine and I became very accustomed to having them around and having people to talk to if I wanted. It's really a pretty good deal.

So, here I am about 6 years later, and I've gone from enjoying the peace and quiet of living alone to being very used to having others around all the time. This afternoon my Mom and Dad are flying off for a nice vacation in Southern California to visit one of my brothers and his family for about 10 days. It's going to be quiet around here for sure. Life is funny really. It took me time to adjust to my new living situation and now that I am, I will notice the quiet and it will seem strange to me. 

My parents deserve a nice trip like this. Mom works hard taking care of me and constantly driving me to my doctor appointments, keeping the home and helping all her kids in so many ways. I'm glad they get to have this little vacation. I wish I could go too, but not this time. Maybe in the future I'll be up to traveling, but not now.

I'll be busy enough with two doctor appointments this week, but it won't be the same around here while they're gone. Maybe my cat will actually come sit with me instead of her usual routine of sitting with my Mom every evening! That would be nice! I'm having Easter dinner tomorrow with one of my other brothers and his wife and I'm looking forward to that. I know they will check on me often and our neighbors have also said they will keep an eye on me! It's not like I'm being abandoned.  

 But any way you look at it, it's going to be quiet around here! Bon Voyage Mom & Dad! Have a great time!

Friday, March 29, 2013


I just thought a little IC humor was in order today. In fact I think a little humor is always in order. My therapist once told me that if you are laughing it is impossible to cry. Your brain can't do both at once. So doing things that make you happy, laugh or bring you joy can be excellent coping techniques to help us deal with our medical challenges.

So with that in mind, I thought I'd share a little "IC Humor"!

Wednesday, March 27, 2013


I cannot stay silent and I must speak out - for all of my fellow IC patients and all chronically ill patients everywhere! I'm all riled up this morning about the prejudice against those of us struggling with chronic pain, disease, disability and pain. One of my personal FB friends posted one of those political pictures on her Timeline, so of course it shows up on mine. It's the following:

This stuff makes me nuts! Many of you following my Blog know this all too well and know what it's like to deal with this type of ignorance! As a chronic pain patient on Disability due to several medical conditions, there are many people on Disability (also considered "Welfare") and other social programs because of a medical condition that makes it impossible to work. Many of us take PROPERLY PRESCRIBED & MONITORED pain medications and could not live without them! In addition, there are medications taken for things like Epilepsy (which I have) that would cause someone to "fail" a drug test because many of those medications fall into a class of drugs that can also be used to treat pain! I can't live without my anti-seizure medication and if I had to take a drug test to "prove" I deserved my SSDI, I would fail!

This is yet one more example of ignorance of the chronically ill that suffer with invisible and painful diseases! So many of us find ourselves living at or below the poverty level because of our inability to continue working! Getting approval for Disability and other assistance is NOT easy and the nationwide denial rate for Disability is about 65% these days! People are not being approved for these benefits easily. I was denied on my first attempt and had to file an appeal before I was approved. (SEE LINK)

I talk to patients struggling to get approval for Disability all the time and it's not easy. They cannot work due to the severity of their disabling condition, have lost their jobs because of all the doctor appointments and have been evicted from their homes or soon will be. In addition, even if someone is approved for benefits, it's not a guaranteed life long payment; we are required to go through "Continuing Disability Reviews" every 3 or 7 years (depending on your condition), so it's not as simple as people think!

As someone who talks to patients in this situation all the time, I state with 100% certainty, those of us on Disability, Medicare, Medicaid, Food Stamps or whatever program any of us needs to survive, do NOT want to be in this situation! Being disabled is NOT vacation and it's NOT retirement!

As many disabled can also testify to, I have had to sell my home that I WORKED my whole life to get (it was my dream home) and move in with my elderly parents. I cannot travel, go to the movies or concerts. I need people to drive me to doctor appointments. Do I have a car? YES! I bought it when I was still working! Do I have nice clothes? YES; I bought them when I was still working! Just because I take a shower, and put on my nice clothes when I go to the doctor doesn't mean I'm taking advantage of the system and I resent those that imply this is the case. Would they have me throw out all my clothes and sell my car!  The people who drive me to my doctor appointments drive MY car because it's only fair to use my gas (that I pay for out of my Disability income) and put the wear and tear on my car and not theirs! I haven't gone shopping in over three years and no one I know on Disability is out shopping and buying clothes, cars and other "extravagances" these people believe we are using our Disability income to buy! It takes every penny I get just to make my insurance premium payments, pay my medical bills and prescriptions, get groceries, pay for my car insurance and so on!

I hope all the people who "Like" this type of stuff never find themselves in a situation where they have to sell THEIR home, find a place to live, pay for health insurance, doctor visits, prescriptions and more without needing public assistance!

This assumption that if you couldn't pass a drug test, you don't deserve assistance, is ignorant and prejudicial against people who would rather be doing anything than living with chronic pain and needing pain medication just to get out of bed in the morning! 

Oh, and the assumption of rampant abuse is not supported by the FACTS! Less than 2% of all people on Welfare in the U.S. commit fraud! (SEE LINKS)

For those of us struggling against this prejudice, I hope you will read these links, get educated about the facts so you can debunk this insulting information when you see it!

Let's all stand up and speak up for the truth and help raise awareness about these lies and myths being spread about the Disabled!

Monday, March 25, 2013


Tuesday, March 26th is Purple Day to raise Awareness for Epilepsy. In addition to my IC and related conditions, I have Epilepsy. My niece has Epilepsy and I have close friends who have lost loved ones to Epilepsy. 

I will NEVER stop working to raise awareness for IC. But, as a Patient Advocate and someone that also suffers from Epilepsy, for one day - March 26th - I am working to raise awareness for Epilepsy and the devastating effects it can have on those struggling with it. 

Check out the Facebook Page for more information on Epilepsy and to show your support for the patients struggling with this life threatening disease and the families who love them!

Wearing my purple sweater for
"Wear Purple for Epilepsy Awareness" Day!

Saturday, March 23, 2013


If you've been reading my Blog, you know I have written about trying to get back to going for some walks, even just short little distances. Well, this week I've walked three times and I'm really pleased. There was a time I could do so much more and I can't now. There will always be part of me that feels I should walk out that door and go for my 6 mile walk like I used to. But I have accepted that is not possible - at least not for now. So what CAN I do? I can do what I can do.

Just put on my coat, walking shoes and walk out that door. My sister-in-law encouraged me to join her for a short little walk twice and today it was my Mom. I am glad I agreed to go. The weather today was decent; sunny, not too windy, so it was definitely a good day to get out. The weather forecast for the week isn't great so it was good to take advantage of a nice day when we get one.

I have talked about this in therapy and I know once things get harder and harder to do, I know I have a tendency to not want to even try. My therapist encouraged me to try; maybe not every single day. But if I'm having a "good" day (we all know what our "good" days are), then I should give it a try. I don't have to go far and I don't have to go fast, but just get out and see what I feel like doing. I did that this week 3 times, so I'm pleased.

For me, one thing that made it easier to do was to self-catheterize before going out. That way I knew I would not need to use the bathroom for at least a certain amount of time. That was a good idea.

My goals since getting IC are small and never long term. But in things like going for walks, my goal is to think about it each day, see how I am feeling after a while and weather permitting, go for a walk.

Today I went for  a walk!

Friday, March 22, 2013


Thought I'd share this idea with everyone today.
So often, our battle with IC overwhelms us that we feel
like just giving up. But if you keep on looking
for answers, better treatments, information, doctors,
and help, you may just find that you CAN
Keep on Going!

Thursday, March 21, 2013


Many of you, I know, struggle with questions about whether you can continue to work or whether you should go on Disability. I know I struggled with making the decision. It wasn't easy to admit I needed to stop working, but in the end, I realized it was what was best for me and my health. None of us wants to go on disability, but sometimes that's what we have to do.

If you are trying to decide if it's what you need to do, I suggest doing your research before making a decision. Make sure you know what your benefits at work are before you just quit your job. Make sure you understand what your options for health insurance are such as COBRA. There are a lot of resources available that can help you as you do your research and I thought I would post links to some of the best information I think is available to help anyone trying to make this decision.

Link to the Disability Page on the ICA Website:

Check out this ICA Podcast on Disability:

Some links to SSA information:

These are some resources that I think can be helpful for anyone trying to make the difficult decision about whether or not to file for Disability. It seems challenging at first, but I found that getting educated and reading, asking questions and gathering information helped me understand what I would be dealing with and made the process easier to deal with.

I am always available to answer questions about the process. 

Wednesday, March 20, 2013


It's SO windy it's hard to hear me speaking, but you'll get the idea!


You can do this to your Facebook or Twitter Profile Picture too!

I hope you'll all get on board and help spread IC Awareness!

Tuesday, March 19, 2013


Please watch the following video blog I put together on
"The Day in the Life of an IC Patient" otherwise known as me!

Monday, March 18, 2013



I know so many of us with IC struggle in the winter months with the cold and snow and never seeing the sun. I know I do. The cold just makes everything hurt even more! So, just thought I'd share a little bit of what it's like where I am in the Chicago suburbs. It's been like this for the entire month of March and I just want some Spring weather and sunshine! 

So, while it feels a lot like Spring is Never Coming, here's hoping for better weather and the warmth of the sunshine very soon! It's so therapeutic and I am looking forward to seeing Spring sooner rather than later (forecast not looking good however).  

So here's to Spring and all it brings; the return of the song birds, flowers and sun. Maybe I'll actually be sitting on that deck in the near future soaking up some sun instead of using my heating pad!

Sunday, March 17, 2013


& My Irish Heritage

(Click Link Arrow to Hear Song)

Me in the St. Patrick's Day Pageant
(Our Lady of Sorrows School - March 17, 1965)

Saturday, March 16, 2013


I was inspired by this song today! I feel this way about how all of us in the IC Community support and help each other, along with our loved ones. The chorus promises that no matter what, you are never by yourself in this. It’s a comfort to hear this song and know that holding on during tough times is best when you can do it together; we're here for each other! So, for all my IC friends - KEEP HOLDING ON!

Avril Lavigne

Friday, March 15, 2013


When you consider the alternative, things could be worse!
I am just happy to be alive; I'll deal with the rest!

Thursday, March 14, 2013


It takes courage to learn to cope with having a chronic, incurable disease such as IC. We are often faced with challenges finding a good doctor, the right treatment, can we still work and so much more. But each and every day is a new beginning and if one day isn't good, the next can be.

This is something I work on a lot. It's a work in progress and of course we have our ups and downs. But the point is, that we "try again tomorrow". So my thoughts on this are if you are struggling, keep fighting. Keep looking for the right doctor, the right treatment, what should you eat, working with a therapist to help learn coping techniques.

I believe that every IC patient has Courage because they get up every single day and try again. We keep on trying to find solutions, help others and focus on what we need to do to help ourselves. To me, that is Courage! To keep fighting your challenges and pain takes Courage! Each of us has this in us - the ability to keep going and that takes Courage!

So, don't beat yourself up if you get down one day. Just remember to tell yourself "I Will Try Again Tomorrow!"

Tuesday, March 12, 2013

Monday, March 11, 2013


1. The never give up approach. My new treatment plan seems to be working! I haven't had a UTI in one month! I never gave up - my doctor didn't either - (even after 3 years) that we'd find an answer! Don't ever quit! Your answer might be right around the corner too!

2. Support of friends and family! Having friends who visit me, family who support and love me makes everything better! Don't feel like you can't ASK for support from friends and loved ones. You don't have to do it all and asking for support might just surprise you!

3. I won my Appeal for my Social Security Disability! If I did, so can you. It's been awhile for me now, but I am still hopeful more and more IC patients who need it, will also get approved. If you are going through this process, don't ever give up and keep fighting! You CAN win!

4. My Local IC Support Group! I have met and made some wonderful friends through my Support Group! If you have one in your area, I encourage you to join. If not, then start one yourself! It's not hard and the benefits are worth it!

5. The ICA Facebook Community! Each and every person I connect with online is a source of support, encouragement, information and friendship! Participate; it's rewarding!

6. The ICA website! Whatever information you need about IC; it's there! Want the latest on IC research; it's there. Want to know how to help fund raise for IC; it's there. Want information on the latest treatment options; it's there. Need a doctor referral; it's there. Need help with filing for Disability; it's there. Need information on IC & Diet; it's there. Need help understanding diagnosis and testing; it's there. You name it, if it's information on IC you need; the ICA has it! Here's the link; go exploring!

7. Having a great doctor! I know this is not on everyone's list and if not, then keep looking! There are great and knowledgeable doctors out there and we should accept nothing less. Keep looking. Consider traveling a little further than you might like (I do) to find a doctor that can help you! When you find the right doctor it will be worth it! (See also Reason #1 - Never Give Up!)

8. My Heating Pad! Aren't they a wonderful invention!?!! I used mine so often and it helps so much! Try it, you'll like it!

9. IC Awareness! The New ICA Billboard Campaign is helping raise awareness all over the country and this is exciting! The Ad recently in USA Today; again more awareness for IC patients everywhere; it's a good thing! The ICA Lobbying Congress recently for IC research funding. The ICA testifying at an FDA Hearing on Opioids! The list goes on and IC Awareness is happening; let's keep the momentum going! 

10. Research! Lots and lots of research! The research, trials and studies going on give me reason to be an IC Optimist that we will unlock some of the mysteries of IC which will lead to better treatments for us all!

If we just stop, take a moment and look, we can all be IC Optimists! The glass can be half full instead of half empty. We all have our struggles and I do not ever discount those. It's how we deal with those struggles that matters. I choose to be an IC Optimist!

Sunday, March 10, 2013


I thought a little humor would be in order today!
I hope everyone has a good Sunday!

Thursday, March 7, 2013


Yesterday, one of my dearest friends in the world, who has stuck by me since my IC diagnosis, came to visit me and take me out to lunch. She lives almost two hours away and there is no way I can drive to visit her anymore. We then started meeting half way in-between, but now, that has become impossible for me too. So, because she is such a good friend, she has taken to driving up to see me to visit! With all the snow we've been having, we had to re-schedule our plans twice, but yesterday was all clear and she made it up.

We went to this tiny, little, French restaurant near my house. It's not fancy, and it's small and quiet with really great fresh food - perfect for us to sit and visit. They have a really lovely and CLEAN ladies restroom and since the whole place is small, I can pop in whenever I need without walking through some huge giant restaurant where the restrooms seem a mile away. We had a lovely and relaxing lunch and she even treated me, which was so not necessary but such a nice gesture and demonstrates what a great and kind and thoughtful friend she is!

After lunch, we went back to my house and just sat on the couch chatting for several hours. Before we knew it, it was almost 5PM and facing such a long drive she had to leave. It was THE best day I've had in a long time! Getting to visit with my dearest friend, talk about all kinds of things - HER life, and not just my IC, was so good for my mental health. It made me so happy and I had such a great time.

After she left, I came up to my office to check my emails and Facebook and after about 20 minutes on the computer it hit me like a ton of bricks! I was TRASHED! So exhausted I could hardly sit upright in my chair! I closed my laptop and curled up with my comfy blanket and fell asleep until about 6:30PM. When I forced myself awake - worried I wouldn't sleep at bedtime if I didn't - I dragged myself downstairs for something to eat. After that I watched tv and found myself unable to stay awake and at 8:30PM I took my evening medications and went to bed! I NEVER go to bed that early and thought to myself that I would get in bed and then wouldn't be able to fall asleep, even though I couldn't stay awake watching tv. Well, I fell asleep and didn't get out of bed this morning until about 8AM; nearly 12 hours of sleep. Of course, I got up about 3-4 times in the night to visit the bathroom, but I fell back to sleep after each bathroom visit.

I was really surprised by how worn out I was from the day; all I did was sit a table in a restaurant and eat, but upon reflection it was about 2 hours. Then when we got home we sat on my really comfy sofa for several more hours chatting away. I never thought I be so worn out by this.

I was surprised by how much pain I was in and how tired I was after the day, but as I've said before: Sometimes it's just worth it! This was one of those times - at least for me! I am just going to rest today and take it easy; nap if I need to. But the benefit from having actual "face time" with my best friend outweighs the toll it took on me physically. Some things aren't and we each have to figure out what is worth it to us if we want to do something that pushes us harder than we might normally feel comfortable with. Some things just aren't worth the price we'll pay, but others are. The time I got to spend with my friend lifted my spirits so much, that it doesn't bother me that I am hurting today. I will deal with it. 

For me, yesterday WAS SO WORTH IT! 

(My Best Friend and Me at her Wedding 7 Years Ago)

Tuesday, March 5, 2013


If you follow my Blog, you are no doubt well aware that I have been struggling with chronic UTI's for over 3 years. I wrote not too long ago about a new medication that my doctor prescribed for me to try to see if we could prevent further infections. This not an antibiotic but an anti-infective and we began treatment immediately upon completing a round of antibiotics and making sure I had no infection when I started taking this medication.

Well, it has been one month and I have not had a UTI since I started on this medication! I see my doctor on Friday and if I make it to that appointment with no UTI, that will be a major milestone that I will be able to happily report to my doctor! I don't want to get overly excited and too "high" emotionally in case I hit a bump in the road at some point, but I am pleased and relieved to get such a significant break from the cycle of UTI's. I cannot say how much this break from all the infections has helped me physically and emotionally. 

I am going to just take this one day at a time but it is a lesson for me in perseverance - never giving up and working with my doctor to find a way to make things better. This is has been a 3 year struggle and it would have been so easy go give up at any point along the way and have my doctor tell me there was nothing to be done. But together we would constantly talk about the situation, he would always look for new ways to help me. As I said I don't want to get over confident, but I HAVE REASON TO BE OPTIMISTIC!

Sunday, March 3, 2013


I love this quote by Maya Angelou! It really feels like what those of struggling with IC must face. We get our diagnosis and it does change us forever. But, if we choose, we do not have to let it reduce us to just an IC patient! We are, each of us, so much more than that and we have the choice to let IC define us, or have it just be part of who we are!

Happy Sunday!

Saturday, March 2, 2013


Baking a cake today for my oldest brother's 60th birthday celebration tomorrow. I love to bake and this is always "my thing" for family celebrations. However, it takes a lot out of me since IC, so I have to take my time, rest and not beat myself up if I want to enjoy the party tomorrow.

The cake layers are baked and cooling on the racks. I'm going to take a nap now while my Mom does some pre-cooking for tomorrow and then after my nap, I'll start working on the frosting. I make everything from scratch, so it it's a little more work, but well worth it I feel. It's my gift to whoever is having their birthday.

We always talk about what we can't do since getting IC, and I can't work in the kitchen doing my baking like I used to. This past Christmas was the first time in YEARS I did zero holiday baking and it was difficult for me as it's always been tradition for me and my friends who I gift my homemade baked goods. But while I can't do a big baking extravaganza like I used do, I find if I plan ahead, get organized and split up the tasks, I can manage. I'm tired right now, so I need that nap. Hopefully when I wake up, I'll have enough energy to make and frost the cake. 

So, if there are things you want to do that are important but difficult, see if you plan it out, get organized and don't push too hard, you may find you can do at least some of what you did before. I'll be happy if I can get the cake made and not feel totally trashed. 

 Off to nap now with my heating pad! 

(Some of my previous goodies for a family party!)

Friday, March 1, 2013


Recently I have been experiencing various challenges on top of my health that have been very frustrating. But due to the Amazing generosity of friends and family, the help and kindnesses I have been the recipient of have made me really focus on Gratitude! I have been so down or upset over these myriad problems that I've had to deal with lately in addition to all my IC issues, it's just been overwhelming.

Then over the past few days, family and friends have come to my rescue and are helping me with all these other issues and I don't have words enough to express how grateful I am for all their support and help! So, once again, I will rely on a quote I found that I feel expresses my feelings very well.

So to all of my family and friends that support, help and encourage me,
I am eternally Grateful - THANK YOU!