Tuesday, April 30, 2013

Catherine's Endomondo Walking Workout

Catherine was out walking 2.16 miles in 47m:05s using Endomondo.


There's a great little App out there called Bitstrips where you can create a cartoon avatar of yourself and create little cartoon scenarios with your avatar in them. This is what I created today; a little IC humor for us all!

"Not Again!!"

Monday, April 29, 2013


Yes, plural, doctors. I just saw my IC doctor on Thursday and he wants me to continue with my instillations, so I had an appointment already for that (nurse appointment really). I have some time to kill in between that and my next appointment with my psychologist, so I decided to Blog right from the doctor's waiting room! The therapist's waiting room is nice and quiet unlike so many other doctor's. It's even got "mood" lighting and I'm the only one here so it's a nice place to wait.

I feel more tired today than usual, yet I slept pretty well last night. I'm thinking it's from the walks I did over the weekend, so I will listen to my body and take it easy today. No need to overdo it and make things worse, right!

It's another beautiful day here in the Chicago area, so maybe I'll spend some time on our deck in the fresh air. Stupid weather here is supposed to get cold again for a few days. We finally get some real Spring and of course it can't just stick around!

I've really been enjoying the last few days of nice weather. Our flowers are finally blooming and our ducks have finally returned asking for their cracked corn! Our nest boxes are showing lots of activity with Eastern Blue Birds and Tree Swallows fighting over who gets the nest box! I enjoy watching it all and it gives me something to do and enjoy that takes my mind off my IC.

Well, almost time to go in, so I'll sign off for today. Wishing everyone a good day and hope you too are enjoying some nice weather.

Friday, April 26, 2013


As you know if you follow my Blog, I posted the other day that my three plus years battle with chronic UTI's had finally been halted and that I was UTI free for 78 days. I also wrote that I try not to allow myself to get overly excited about these milestones in case I hit a bump in the road and relapse. So while I was pleased, I was keeping my emotions level and not jumping up and down.

Well, yesterday I saw my doctor - he is the best! Of course before he comes in, I go over things with his nurse and told her as of yesterday, I was at 80 days with no UTI. So when my doctor came in the exam room he had a big smile on his face and grasped my hand warmly and said "80 days! We have a lot to be happy about!"  

I told him about my philosophy of not getting to excited or celebrating because if I got a UTI, I didn't want to feel like it was a huge let down. Well, he looked at me and said, he understood my thinking but said he wanted me to give myself permission to be excited and celebrate this victory! It's OK if it doesn't last forever and I get another UTI in the near future; we'll cross that bridge when and if we get to it. But in the meantime, 80 days is a big deal - so says my doctor - that is reason to celebrate!

I have been going to my doctor for 12 years and I trust him implicitly. He is the most caring, dedicated and knowledgeable doctor I have ever worked with. His patience knows no bounds and he really listens to me. He has helped me so much, so when he makes a recommendation, I listen.

So, per my "doctor's orders" this Blog post is me Celebrating 81 days (as of today) of being UTI free! Thank you doctor for getting me here! 

Thursday, April 25, 2013


Today there was a link on the ICA Facebook Page to an excellent article about "What NOT to Say to Someone in Chronic Pain". I started to join the conversation on the FB page but decided this was a good topic for my Blog today and that I would post my take on this ever recurring topic. Here's the link to the article in case you missed it on the ICA FB page.

Like the author I TRY very hard to take things in the spirit in which they are intended. Most people aren't trying to be snarky but think they're being helpful. There are always going to be some people we encounter that in fact may be disbelievers and intentionally make assumptions and comments, but they're not worth our time or energy. I work hard not to let those people get to me; I know they're just ignorant and not interested in understanding and if that's the case, it's not worth my energy to explain it to them. 

Now, if someone who I think is interested, but just doesn't fully understand makes a statement that seems insensitive, then I try to explain the reality of the situation. Those people are worth my time and effort and this usually works with people in this category.

Recently, there has been a new situation I have encountered that for me, at least, puts me in what I feel is more of an uncomfortable position as opposed to making me mad or upset. This is the situation when meeting new people who genuinely are interested in my pain & IC, ask me all about it, and are very sympathetic. But then next thing you know they're sending you suggestions on treatments to try; acupuncture, diets, and so forth. I know they mean well, they want to help and I actually like these people. But, I've had this for 12 years, do they really think I haven't explored every option out there to help my pain and symptoms? And what does one say to them without sounding like you aren't interested in trying new or different therapies? Everything I come up with sounds like I'm not interested in trying to help myself or that I'm just blowing them off. It puts me, the sick person, in such an awkward and uncomfortable situation. And I feel that this is not fair.

I think we need to do our part to make sure those in our lives really understand what we are dealing with. We need to ignore people who make these stupid comments, give us dirty looks when we use our Handicapped Parking Permit or even worse, accost us in parking lots like one poor woman posted happened to her! I get the dirty looks too when I use my permit! While it's upsetting, of course, some situations aren't worth engaging in. I know, easier said than done. But it's a goal. 

My wish for family, friends and people who are involved in the lives of those of us living with chronic illness, pain and invisible disease would be to just ask us how they can be supportive to us? Ask us what we need from them; how can they help? Instead of offering up unsolicited treatment options, or giving us trite "words of wisdom" on how to handle our illness, ASK questions first! Ask if you don't understand what we're dealing with and allow us to explain it to you. If you don't understand, ask again. Most chronic pain patients are extremely knowledgeable about their condition, the treatment options available and the research going on. We'd love to tell you about it if you want to know. After we've explained our illness, then ask us how to help and what you can do to support us.

So, I feel we should all work at educating those around us, but sincerely wish those who are in the lives of people suffering from chronic pain/invisible disease(s) should ASK before you speak!

Wednesday, April 24, 2013


I had another one of those nights last night, tossing and turning in excruciating pain throughout my entire body, not just my bladder. I finally caved in - again - around 3A.M. and took a Benadryl which put me to sleep. When I have to do that, I get "medicine head" for about 24 hours, so today I am groggy and keep falling asleep. I'm trying to stay awake so maybe I can sleep tonight. 

So, since I am so groggy today, I thought I'd just put up a little something that I found amusing and sort of how I feel today. 

Tuesday, April 23, 2013


If you've been following my Blog you know I have been struggling for over 3 years with chronic UTI's on top of my IC. It has been horrendous, painful, exhausting and frustrating to say the least. But back on February 5th my doctor started me on a new treatment plan to see if we could break this cycle. I had just finished a round of antibiotics to clear the most recent infection and so we wanted to start the very next day on this new plan.

Well, here we are 78 days later and I am UTI free! This is a big deal for me; I am only 12 days away from hitting 90 days without an infection. That will be a landmark and the longest period of time I have gone without an infection in over 3 years. I am very pleased. I don't want to get myself too excited and set myself up for disappointment if I hit a bump in the road. But I am optimistic and that's a good thing!

I feel my body is still in recovery mode from nearly 4 years of UTI's on top of IC but breaking the cycle is allowing me to recover and get back to what I call "my normal level of bad" which is simply living with my IC and its symptoms and issues. Believe me, right now I'll take it!

I see my doctor this week and I will be interested to hear how he feels we should proceed. We will have quite the discussion I am sure. But, whatever we decide is the best approach going forward, I am grateful for the plan he put together that has gotten me this far. 

So, I tick the days off on the calendar as each day passes that I am UTI free. Today is 78 days and counting! And I am grateful.

Monday, April 22, 2013


Hi all! I'm back. Not sure if you noticed, but I took a little break from writing on my Blog. I needed a breather and to rest my mind a bit, evaluate whether to keep going.  Are there too many IC Blogs? Do you feel that there are too many for people to want to follow? Share your thoughts with me.

As I said when I began writing I wanted to share my journey with IC and, by doing so, hopefully help others as they go through their journey. I hope that's what I'm doing. I'd love some feedback. 

Either way, I decided I'm going to keep plugging away in the hopes that no matter how small a following I have, those people are getting something out of my Blog. Thank you to any and all who read and follow my Blog!

I had a bad night last night, for no apparent reason. We all get them; sometimes we know why and other times there just doesn't seem to be any reason. Last night was rough with lots of pain from head to toe. I can't take anything for pain except Tylenol so at almost 1:00AM, I took some. By 2A.M. nothing and I was still tossing and turning. So I caved and took a Benadryl, didn't go back to bed but to my chair in my office and turned on the heating pad. My kitty came and curled up with me and I finally dosed off. I woke again at 5A.M. and crawled back into bed.  Why is it that so often this stuff happens at night? Ugh! All day I was doing fine, but come bed time, my body decides to rebel and keep me from sleeping. I'm sure you can all relate.

At about 8A.M. I woke up again and I figured I'd just get up. I'm just going to listen to my body and take it easy today. I send my good wishes to my IC family that you all have a "good" day whatever that means to you!

Wednesday, April 10, 2013


The song is about overcoming all obstacles and never giving up in life. As long as we keep pushing, keep persisting, we’ll definitely achieve whatever we set out to achieve. I was inspired by this song and it's message. I hope it inspires all of you too!

Tuesday, April 9, 2013


Yes, here I am Blogging while sitting in the waiting room of my psychologist. I just came from my Nurse appointment at the uro/gynecologist for my weekly instillation - aaahhhh! I know they don't help everyone, but my instillations are a true life saver for me and whenever I get one, it's instant relief. The good news is I am still infection free so the streak continues! This is the longest I have gone in over 3 years without a UTI, so I am pleased and grateful.

I have two more instillations then I see the doctor the following week. So we will see what plans he has in store for me at that point. I will be interested in his thinking on how to proceed.

Due to the way things had to be scheduled, I have a little time to kill in between my two appointments, so today I brought my iPad with me, logged on to the hospital's free wi fi and here I sit blogging away. It's nice to be able to do this.

It's been 3 weeks since my last session with my therapist, so I think it's about time. I have been working on some of what we talked about at my last session - trying to go for little walks more often is a big one. I think I've done that, as you know if you follow my Blog because I've written about it a few times.

I feel the relief from the infections has helped my emotional state a lot. That was really wearing me down both mentally and physically after more than 3 years. So I feel a relief in that. The nurse asked me how I am feeling these days and I had to pause for a moment. Of course I am better with no infections than when I have them. But I feel I am back to what I like to call my "baseline bad"! She kind of laughed at that. I said, well, I'm not great. I still have to self-catheterize 3-5 times a day and yes that helps, but I still need my instillations as well. So while I am grateful for getting these infections under control, I am not "all better".

That said, I am certainly improved and that is a good thing! This instillation this morning will allow me to sit through my therapy session without having to stop to go to the bathroom. Always a good thing! I do not take it for granted!

So, there you have it; another day at the doctors! I leave you with my favorite positive affirmation:

May you be Well, Peaceful & Happy!

Monday, April 8, 2013


For those that may not be aware, the ICA has several excellent videos on YouTube with doctors discussing various topics of interest to everyone in the ICA Community. If you have not checked these out, I strongly urge everyone to do so. Here's a link to the YouTube channel with these videos. I hope you'll all check them out!

Sunday, April 7, 2013


This is all any of us can ask of ourselves;
that we Try Again Tomorrow!
That is our courage!

Friday, April 5, 2013

Wednesday, April 3, 2013


Today I am inspired. According to the Associated Press "Acclaimed film critic Roger Ebert said he's been diagnosed with cancer again and that he will scale back his prolific writing of movie reviews while undergoing radiation treatment."

Man, Roger Ebert has been through the ringer. Living here in Chicago, as does Roger Ebert, we may hear more about his never ending battles than some other places around the country; I'm not sure. But if ever there was someone that has had to face seemingly never ending health battles, it's Roger Ebert. The thing is, he NEVER gives up fighting, and has kept doing his work even though it is extremely difficult to do so.

He has battled cancer in his thyroid and salivary glands and lost the ability to speak and eat during previous surgery, which also left him with a facial disfigurement. He has to be fed through a feeding tube and has spent months at the Rehabilitation Institute of Chicago after previous surgeries but never gave up and always found ways to continue doing what he loves. 

Ebert said the cancer recurrence was discovered after a "painful fracture" that made it difficult for him to walk. He was hospitalized late last year with a hip fracture.  "It really stinks that the cancer has returned and that I have spent too many days in the hospital," he wrote.

Yet he says he's not retiring. He's going to fight yet another setback and continue to write his reviews to the best of his ability. He may not write and see as many movies as he has in the past, but says "I'll be able to at last do what I've always fantasized about doing: reviewing only the movies I want to review." Ebert wrote in his online journal.

If ever someone had reason to just stop, it would be Roger Ebert. Of course there are likely lots of unknown people who keep going like Ebert does (many people with many disease a lot like those of us with IC); they do it in anonymity with no one writing stories about their bravery and I don't want to diminish those individual's battles at all. 

But when someone in the public eye goes through so many struggles and allows the public in, shares those struggles with others in the belief that it can help those anonymous people going through the same thing by inspiring them and showing them that maybe they can do it too, I am inspired. As mentioned above, the surgery to remove the cancer from his salivary glands left him unable to eat or talk and severely disfigured yet he never shied away from allowing the press to take his picture. That's brave!

I feel I can relate on some level by the never ending struggles he has faced, but I am lucky. I am not battling cancer. I am truly inspired by his never ending positive attitude after everything he has been through. It inspires me to keep going every day. 

So, even though he will never know this, Roger Ebert inspires me to keep going. If he can do it, so can I. It's not always easy, heaven knows. But for me, like Roger Ebert, giving up is just not an option!

Monday, April 1, 2013


This Blog post is about the kindness of friends and neighbors. If you follow my Blog you may be aware that I often write about my wonderful Mother having to drive me to all my doctor appointments. I don't know where I'd be without all her help, but I am lucky to have her and don't take it for granted for one minute.

That said, my parents are on a much deserved vacation for about 10 days and then in May my mother needs to have knee replacement surgery. So the problem arises, how will I get to all my doctor appointments? 

While my family is supportive, they all have jobs that, as we all understand, make it really impossible for them to take time off to take me to my appointments. But I am lucky and blessed to live in a community filled with wonderful friends and neighbors who have worked hard to put together a volunteer committee to help residents with things just like this - driving people to doctor appointments, cooking meals, shopping, picking up prescriptions and so much more. My wonderful sister-in-law is on the committee, known as the Prairie Crossing Volunteer Corps, otherwise known to us as the PCVC (the name of our community is Prairie Crossing). So my sister-in-law hooked me up with the committee and the members of the committee didn't hesitate to line up to volunteer to drive me to all my upcoming doctor appointments while my parents are away and while my Mom recovers from her surgery in May! Some of the committee members I know a little, some better than others and some I have never met but will soon. Each has contacted me to let me know the date for which they are volunteering, get details and confirm with me. 

This is an amazing gift to receive and I am truly grateful to live in such a community where neighbor helping neighbor is alive and well and on display in the truest sense! Sometimes it really does "take a village"!

No one wants money for gas or anything for their time. They do this out of a true desire to help others in their community and some because they want to give back because they have benefitted from the help of the PCVC. 

My gratitude for these wonderful friends and neighbors means so much to me that I knew I had to do SOMETHING to show my appreciation. But what I asked myself since no one wanted anything in return? Then it hit me; the perfect way to say thank you. I made a donation to the ICA in the name of the PCVC to let them know how much what they are doing means to me. By donating to the ICA in their name, now they have not only helped me, but everyone suffering with IC as well. Money that will go directly to IC research. 

Sometimes we think we are going through this alone and then along comes a group of people to help and the kindness of friends, family and neighbors shows us how wrong that is! 

Thank you to all the members of the PCVC for all they do for everyone in my community and for the gift of their time and help!