Wednesday, February 27, 2013


Hi All - Just wanted to put up a little something to let everyone know that I'm have computer issues. Had to go through some convoluted procedures to get this up, so won't be posting much over the next few days at least until I get my laptop issues resolved. So in the meantime, I'll just leave  you with a little positive message:

Monday, February 25, 2013


This is what I am working on these days. I hope this provides some inspiration to everyone in some way, no matter how small.

Friday, February 22, 2013


One of the things that has bothered me the most since being diagnosed with IC, and even more since going on Disability, is the fact that I can't exercise anymore. I used to run or walk, hike and ski. Giving up these activities has been something that was very hard to do, but has been necessary. Skiing had to be given up when I got my InterStim because I couldn't risk falling down and dislocating one of the wires which would land me back in the O.R. to reposition it. Giving up skiing was the hardest of all as my whole family skis and I loved it more than any activity. I was never good at sports and when I tried skiing, it came naturally to me and I picked it up quickly. I just LOVED to ski!

Even when I got IC, for a time I was able to continue to walk as long as there was a restroom along the way where I could stop and pee. But over time, as my IC worsened and Disability became my new reality, I couldn't even manage that.

So, it has been very frustrating. I watch my amazing 82 year old mother doing her Yoga, Pilates and weights every day and feel like a slug. I think, if she can do it, why can't I? She needs knee replacement and yet there she is doing her exercises every single day. I know healthy people half her age who can't do what she does. In the good weather, she hops on her bicycle and rides almost every day. She is my inspiration.

I'm now starting to have knee problems which are really acting up even more than ever. Probably arthritis, but just one more thing to deal with.

Well, I'm sick of feeling like a slug. I don't expect to be able to do what I used to. But I can adapt and at least keep myself loose, limber and moving. So today, I asked my Mom to show me some exercises I can do with my arms while sitting in a chair using her 2 pound weights. Nothing should hurt and nothing that requires pelvic floor muscles, but using the weights with my arms to regain some flexibility, strength and just keep my body and everything from falling apart. So, I'm going to work on doing this more regularly. It's a step. I can't do much right now, but I don't care. I'm going to do what I can do and see how it goes. The point is just to keep my body moving.

I'm also going to try to use the treadmill (while it's still winter) and do some walking. I plan to start slow and easy and if I have to get off after 10 minutes to go pee, I will. I'm not looking to do an hour on the treadmill like I used to. But, research has shown that even 10 minutes of exercise a day can increase your life expectancy. So, again, I want to keep moving. I will do what I can do. I have to wait for my left knee to stop hurting, but this is my plan. 

It has always bothered me that I am so inactive since IC. Well, I can do something about that. I just had to problem solve and find ways that I can get moving but within my new limitations. I don't have to just give up and do nothing. It's not about running another marathon or 10K (like I did before IC).  I know I'll never ski again and I will always miss that. But I can do some things that are good for my body and that will keep me limber, flexible and healthier.

Now, it's just about the fact that I "Gotta Keep Moving!" 
Me in Better Days on the Slopes!

Wednesday, February 20, 2013


This has been on my mind lately. I know I have been struggling even more than usual with my IC and fighting to keep seeking answers and not allowing it to take me down. I have been working with my psychologist more on coping techniques because I've been struggling more. I have learned to recognize when I'm feeling like things are getting the better of me as a result of being in therapy. So when I notice that I am experiencing an increase in mood swings, crying and so on, I know it's time to see my therapist more often.

I know I've posted about this several times lately, but I've noticed others seem to be battling emotional struggles that go along with being a chronic pain/illness patient. First, you should not feel bad about feeling bad. We have IC and all that goes along with that and it's not easy. But I love this quote about continuing to fight to get back up when we feel we've been knocked down. That's how I feel about being an IC patient. 

Having IC is a roller coaster of good days, bad days and everything in between. One thing I've worked very hard on in therapy is not to let the good days get me overly happy and excited. I believe I have learned through experience that if I get too excited and then suddenly I'm hit with a bad day or a relapse, it's a huge fall down mentally. So, my goal is to take every day one at a time as it comes. If it's a good day, fine. Be thankful, of course, and just keep on going. If it's a bad day, I also try not to sink into sadness and depression. I have IC so I know there will be "bad" days and I should expect them. When they happen, I do whatever I can to take care of myself on those bad days and just get through it. Or as the quote says, to fight more intensely when I am struggling. 

The point is to never give up, keep getting up and fighting even when you get knocked down by your IC. If you feel "stuck" in sadness, anger, tears and depression; get help. It IS possible to learn to COPE with all that having IC means in our lives.

So, even if you are knocked down, get back up. Always get back up! Never stop fighting through the struggles and you may just find that you are stronger than you think you are!

Monday, February 18, 2013


Here's another quote that a friend of mine shared on her Facebook wall;
she is NOT an IC patient but has her own life struggles that she is
dealing with and this was something that she connected with. I feel the same way.
I share these quotes often because they strike a chord in me and feel that
I either respond to them in a positive way, or that they feel like it's
something that I do. I have always been a person that worries a lot and friends and
family always teased me that I needed to "back away from the cliff."
This is something I am working on in therapy too. It's not that we have to 
NEVER have concerns or things to think about dealing with,
but over-worrying doesn't get us anywhere and, as the
saying goes, is stupid. I know that's strong language, but
the point is it's unnecessary and a waste of time. So often,
we are worrying about things over which we have no
control and it's not healthy. It's been proven that stress is bad
for our health in so many ways and worrying is stress.
So, I'm actually headed off to see my psychologist
today and once again, issues like this will be on the agenda.
The take away from this, for me, is to try to focus on what
we need to do to take care of ourselves, do the best we can
to insure we are following our treatment and diet plans,
ask questions when we have them, but then work on
not spending so much time worrying so much. It's not going to
make things better and, in fact, can often make things worse.

Worrying is Stupid!

Sunday, February 17, 2013


This really resonated with me and is something I try to work on every day.
I work on this with my therapist and it is a technique worth trying
when you are struggling. We often find ourselves chatastrophizing instead
of focusing on the good things in our lives. This is not to say our struggles
don't exist, but when you need help dealing with those struggles and
challenges, focusing on what we have to be grateful for can really
make a big difference!

Thursday, February 14, 2013


Sometimes we all just need a little support and
encouragement from our friends and family. 
Don't be afraid to ask for it if you need it!

Wednesday, February 13, 2013


Today I am feeling tired and worn out from all I did yesterday. I also had to go out today to get my car emissions certified (Mom went with me of course). So I am curled up in my comfy chair, with my heating pad and comfy blanket and just kicking back and resting for the day, so this post too will be brief.

I think one of the important things we can learn is to listen to our bodies and if we do have a good day where we feel up to doing some things, if we are feeling worn out or our bodies are "talking back" to us the next day, that we should accept that and give ourselves permission to just take it easy and rest and do whatever we need to in order to help feel better.

I keep falling asleep for short periods of time, and that seems to be what I need today. I am going to listen to my body and do what it is telling me and that is to rest up and just take it easy.

Give yourself permission to take it easy if that's what you need to do. Don't beat yourself up if you can't get some chores done that you may have planned. We need to be flexible and adjust our plans according to how we feel. 

So, yes, today is a "rest day" for me and that's OK. Today I'm takin' it easy! 

Monday, February 11, 2013


I am actually excited that my local Support Group is meeting tonight after taking some time off during the holidays and early winter months! I miss the wonderful people in my group who are a real inspiration to me and, I believe, to each other. I always come away from our meetings feeling supported, encouraged and better than when I got there!

I hope we get a good turnout tonight and that people are feeling well enough to attend. But whoever is able to make it, will make the time together worthwhile and helpful. I'm also looking forward to seeing my Group Leader, as she is a constant source of support, friendship and help to me and our group. 

So, I am really happy it's Support Group night! Looking forward to seeing all my IC friends and catching up and helping each other with our mutual challenges!

If you don't belong to a Support Group, I strongly suggest you look for one in your area or even start one. They are SO worthwhile!

YAY! It's Support Group night!!

Sunday, February 10, 2013


"You Have Two Hands: One to Help Yourself, the Second to Help Others"

I just love this song and felt it to be a perfect accompaniment to today's 
Inspirational Quote:

"Bridge Over Troubled Waters"
- Simon & Garfunkel

Saturday, February 9, 2013


An Update on my struggle with UTI's.
(Click on the bottom right corner for full screen.)

Thursday, February 7, 2013


I love this song and it's message. It's inspirational and the message is about never giving up; we may still fall and hit bumps in the road, but it's about getting back up and keep going on. I feel this is the story of IC patients. We want to never give up and work hard at it, and while we aren't always successful and have our struggles, we should always try!

So, enjoy the video and while listening to it, think about Never Giving Up!

Wednesday, February 6, 2013


This is something I am working on every single day. I talk about it with my psychologist and how learning coping techniques can and do impact my attitude and, therefore, my emotional state and how I manage living with my IC.

I just had an appointment with my psychologist yesterday and this was the main topic of our discussion.  How I've struggled a lot with coping and not having the attitude I would like. I am going to continue to work on this. I truly believe that the way I THINK and FEEL about my IC have a direct impact on how I feel. When I am down, I need to do the things that help me feel better and make me happy. Things like meditation, listening to music I like help change my mood completely. So I need to do more of this when the stress is rearing its ugly head. Putting my head phones on and listening to my favorite music has literally helped me go from near tears to being in a much better mood. We all have to find the things that work for us, but try whatever you think will work for you. Talk to a therapist, take a meditation class, yoga. These things can change how you cope and that's never a bad thing.

I can't do anything about having IC, but I can choose how I deal with it. It's not easy, but it's worth the effort. 

I love this quote and have always been inspired by Scott Hamilton who has fought brain cancer, testicular cancer and has the most positive attitude I've ever seen. He is truly an inspiration.

Monday, February 4, 2013


As we all know, yesterday was Super Bowl Sunday, which of course is generally reason for having a Super Bowl Party! My family is no exception. Though very small, we usually get together to watch the game and enjoy some munchies, relax and watch the game. Even since getting IC, we've shared these get-togethers, but they have mostly been at my parent's house where I live.

This year, my younger brother and his wife, who live within walking distance of our house, wanted us to come over and enjoy the game at their house. Immediately, I told my Mom "No"; that I wasn't going to go. Based on how I've been feeling, I didn't think I could be comfortable and relax and enjoy the evening. I was flat out not going to go and managed to get myself all worked up about it and how frustrating it is that I can't just do whatever I want without it being a big deal. I hate putting people out, having them have to go to extra lengths to insure my comfort and just dealing with everything that goes along with "going out" of our comfort zone. I'm sure a lot of you can understand that.

Well, my wonderful family didn't let my refusal and distress deter them. My wonderful Mother talked to me about my issues and allowed me to express why I didn't want to go, but offered suggestions about how we could make it work. My fabulous brother and sister-in-law went out of their way to tell me I would be comfortable and not to worry about "putting them out" in any way.

I felt so supported and appreciated it more than words can say. So, I decided that I would do what I thought I couldn't. I chose to give it a try. Everyone understood that if I felt I had to leave and go home at any point in the evening, that would be just fine. It was one of the best things I've chosen to do!

My brother and sister-in-law put me in the most comfortable recliner chair, got me blankets to keep me warm and made sure I didn't have to get up and down to fill my plate with all the tasty munchies set out for us to enjoy. I made it through the entire game and had a wonderful time with my family.

Did I have to get up a bunch of times to go to the bathroom? Yes. Did I let it bother me? No.  I just did what I had to do and didn't let it take anything away from the nice time I was having.

I have my wonderful and supportive family to thank for "nudging" me along in just the right way and I am so glad that I did what I thought I couldn't. I need to do that more often and hopefully this will remind me that I can do things that I sometimes think I can't. I think we all can. If you approach it with the right attitude, some planning and love and support, we may just find that we CAN do things we think we can't!

To my wonderful family that encourage me every single day!

Sunday, February 3, 2013


"The greatest test of courage on earth is to bear defeat without losing heart."