Monday, December 31, 2012


The New Year is traditionally a time of reflecting on the year just past and making plans for the New Year just beginning.  As I look back on 2012, I can honestly say it has been more challenging than I would have cared for, but I made it through with the support of family, friends and my excellent medical team. For those that supported me this year, I am forever grateful. I could not have done it without each one of you!

My wish for 2013 is, well, pretty simple; that everyone finds a measure of peace, health and happiness. So, I send you all my sincere best wishes for a Happy New Year!
 I found this beautiful version of Auld Lang Syne sung by Mairi Campbell, a Scottish singer and musician, singing the original Scottish version.  Enjoy!

Sunday, December 30, 2012


“If you think you are beaten, you are,
If you think you dare not, you don’t.
If you like to win, but you think you can’t,
It is almost certain you won’t.
If you think you’ll lose, you’re lost,
For out in the world we find,
Success begins with a fellow’s will.
It’s all in the state of mind.
If you think you are outclassed, you are,
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.
Life’s battles don’t always go
To the stronger or faster man.
But soon or late the man who wins,
Is the man who thinks he can.”
C. W. Longenecker

Friday, December 28, 2012


So I had an appointment yesterday at my IC doctor's office with his Nurse Practitioner, who I adore! She has been my rock through many struggles and is always there to help me, support me, helps me communicate to my doctor when I need to and just really is a true "Florence Nightingale"! And then the bad news comes; she is leaving the practice for an opportunity she could not refuse.

We all know what this is like in the business world. A boss we love leaves for a better opportunity; a co-worker gets a promotion and moves on. We're always sad to see them go, but this is the way of the world. But when it's someone we've come to rely on so much for our medical care, it seems to hit us harder than it does in these other situations. I am truly saddened to see her go and it is a loss to my doctor and their practice. She is going to be missed and near impossible to replace.

But, such is life and we must learn to adjust. It's just more challenging when we lose someone that has come to know us so well; takes care of us and holds our hands when we cry and works so hard to help us feel better. Learning to move on from a situation like this is more difficult than having a great boss leave (although in my career, that was never a good thing either!). I cried and hugged her yesterday when I found out but when someone has taken such good care of me, I just want what is best for her, so I am happy that she has found a new opportunity to challenge her and make her life better.

It is selfish that I don't want her to go, so I understand and wish her well. It will be an adjustment when she is gone. I have two more appointments with her before she leaves and I have to find some way to let her know how much I appreciate all she has done for me.

So this post is dedicated to my nurse who has helped care for me these past 11 years. I wish her all the success in the world and know that her new patients are going to be blessed to have her! I send her good luck and best wishes. You will be missed more than you know! Thank you for all the care you have given me; you have been a true life saver and I already miss you!

"At times our own light goes out and is rekindled by a spark
from another person.  Each of us has cause to think with
deep gratitude of those who have lighted the flame within us."
Albert Schweitzer

Wednesday, December 26, 2012


If you've been following my Blog, you know that I have been struggling more lately than usual due to chronic UTI's and all my IC challenges. I have had a harder time with feeling down in the dumps and am working more closely with my therapist on this issue. But nonetheless, things have been more difficult for me lately. As Christmas approached, I was not in the mood and as I wrote the other day, was not ready and had no gifts for anyone.

But I am here to say, that what we do CAN change how we feel, at least to some degree. As I posted the other day, my wonderful Mom helped me get gifts for my family and that went a long way toward cheering me up. In addition, Christmas Eve and Christmas Day were wonderful days spent with family, good food and lots and lots of laughter! Truly, laughter is the best medicine! I nearly forgot what had been upsetting me so much over the past few days. My mood was certainly greatly improved as a direct result of being in the company of my family and sharing good times with them. I could easily have stayed upstairs in bed; I certainly felt that lousy. But I didn't do that. I got myself showered and dressed and participated in our family events to the best of my ability and had a great time.

Today, some friends of mine that I get together with for Christmas every year - it's our tradition and we always meet at the same friend's home, she cooks a beautiful meal and we exchange gifts and have a great time. The bad news is that these friends live quite a distance from me, and it has always been a challenge to get there, but I've always managed to pull it off. Unfortunately, this year I had to tell them there was no way I could get there for our celebration! Well, talk about great friends; they told me no problem, they would drive up to my house and we would have lunch and then spend some time around our tree before they had to head home. I took them to this little, not fancy but excellent little French cafe near my house and we had a great meal together. We came back to my house and exchanged gifts and it was truly one of the best days I've had all year. I am totally wiped out from it, but it was SO worth it as being with my closest and dearest friends made me so happy. We laughed so much and had such a great time. Again, I could have easily turned them down when they said they would come up to me, but I truly believe spending time with friends and those we love CAN make a difference in how we feel, that I gladly accepted and boy am I glad I did.

These past few days have given me so much joy and happiness and I truly believe it has made a huge difference in how I feel about all I am dealing with. I have been happy for these past few days and I can't say that was true before. So, spending time with friends, family and loved ones has made a big difference in my life and I am grateful for each an every one of them who love and care about me! It's not a long list, but it's big in feeling.

To my family and friends - I am forever grateful for all you do to support, encourage and help me! For all the donations to my Fundraising Campaign, there just are no words except to just say thank you so much!

So, my wish for everyone as we enter the New Year, is that you too will find a way to spend some time with your friends, family and loved ones and that it gives you the feelings of joy, love and happiness that I experienced!

Tuesday, December 25, 2012


Leave it to Santa to know what to give an IC patient for Christmas!


The presents and stockings surround the tree waiting to be opened. But first the breakfast feast is being prepared and once we are all stuffed, then it's present time!

Merry Christmas one and all!

Monday, December 24, 2012


Enjoying Christmas Eve with the family! A Great night!


by Catherine Horine

The snow has been falling outside as I write;
As I look out the window, it's pretty and white!
We put up our tree and strung all the lights;
A real family affair without any fights!

There are Reindeer and Snowmen, lots of festive decor;
The house is aglow with decorations galore!
Both inside and out, the Christmas Spirit is here;
We're happy and smiling, full of holiday cheer!

As we wrap all the presents in paper and bows,
Half the fun's the surprise, we hope no one knows!
Each gift has been purchased with love and much thought;
not to mention long lines and the traffic we fought!

And so this is Christmas, it's here one more time;
It's that time of the year when I send you my rhyme!
It comes with much love and to wish you one thing;
Let's all enjoy the Season; it's a long time until Spring!

Saturday, December 22, 2012


I was feeling down in the dumps today as I haven't been well enough to do ANY shopping for Christmas and, while I didn't want to spend a lot of money or do anything extravagant, I wanted to be able to get a little token of appreciation to open on Christmas morning for my family who does so much for me all year long. But time was running out; here it is the last Saturday before Christmas and I knew everywhere would be insanely busy and I wasn't up for that either.

Once again, my Mom to the rescue. I didn't even know what I would get, but she helped me come up with some ideas and we headed to a mall she wanted to go to anyway for something for one more person. So off we went. We both said we would prepare ourselves for it to be crazy busy, not let it get to us and just go with the flow. I was moving slow and not up for a long shopping day but the Christmas angels must have been watching out for us. The mall was indeed crazy busy, but we got a parking space right by the first store we were headed to, and while there was a line inside, we got what we needed and the store was doing a good job at moving the lines along and we were out in no time - two gifts down. We walked across to the next store and it too was insanely busy, but I quickly found what I was looking for and before getting in line, asked Mom to hold my selections and ran to the bathroom expecting a line - miraculously it was empty and I was able to use the ladies room right away (whew!) and go back and get in the check out line. Again, I thought the line would take forever as it was quite long, but the store had all registers working and did a good job of moving things along and before I knew it - 3 more gifts done! That left only one more and that was at a store back near home, so we high tailed it out of the crazy mall and realized we hadn't been there even an hour! Amazing.

Last stop for the last gift and they were dead; every parking space empty; got what I needed and we headed home! All my gifts in hand just needing to be wrapped! I went from tears a few hours earlier to having everything I needed for everyone and feeling happy and grateful that my wonderful Mother once again came to my rescue.

But the icing the cake today was our community's Annual Christmas Carolers. Every year, a group of singers get together and hop in our farm's wagon and get pulled around the development stopping along the way at various designated areas to sing for everyone. Neighbors come out on their porches to listen and enjoy the beautiful Christmas carols. We had some friends over beforehand and enjoyed a visit around our tree, then went outside to watch the carolers for a few minutes before retreating to the warmth of the house.

I am struggling these days with my IC and have been battling being down in the dumps, but today really helped me appreciate my family, friends and the true spirit of Christmas.

Then I connected with my brother and his wife in California on Facetime to top of a wonderful day. We decided we will set up a time on either Christmas Eve or Christmas Day to Facetime again when everyone is here! That also did a lot for my spirits.

So, I hope everyone can find positive and fun ways to help you enjoy the holidays and be grateful for what we do have. We have our challenges, but we also have many blessings and today I felt blessed.

The Prairie Crossing Carolers!

Thursday, December 20, 2012


I have been torn over the past few days about writing about this or not. It’s one of the reasons I chose to take a break from posting for a few weeks.  But I finally decided that it’s important to me and so I am going to try to put into words what I have experienced quite a few times, and once again just this week

Many of us have experienced these situations and they are very upsetting when they happen. We often don’t understand why and are baffled and shook up when we find ourselves having to deal with this issue. I’m talking about when we’re posting answers to questions on Facebook, offering up suggestions about what has worked for us in our battles with IC, and doing our very best to help someone by providing them with information from the ICA and so forth. Then, BAM! Out of the blue, you are the recipient of verbal attacks the likes of which is so out of proportion to anything that was said, it causes you such upset and feels like you’ve been kicked in the gut. Next thing, you are un-friended and Blocked on Facebook. I myself have been forced to Block others due to harassment simply for trying to help someone and next thing I know I am literally being threatened and harassed. This has happened to me several times and I am not alone in this experience, as friends of mine have messaged me about similar situations looking for answers as to what could have caused such nasty and vile attacks

I work very hard whenever I post or respond to someone about an IC issue. I work on my response in Word, edit, re-edit and try very hard to compose a thoughtful and helpful answer. I have frequently consulted with family and my Support Group Leader to insure that I am not writing anything that is offensive, condescending, unkind or worse, inaccurate. When situations like this have happened, I have shared these exchanges with others again to see if anything I said might have been misconstrued. I take this very seriously and would never intentionally want to hurt anyone, but I get that sometimes what we write can be misinterpreted. In all cases, I have been reassured that my comments were not in any way hurtful, unkind or rude.

I am not perfect, so I’ll allow that miscommunication and misunderstandings are possible when writing things in emails, Facebook, online etc. It is very easy to misunderstand meaning when something is written than when talking face to face. But the vitriol that I have experienced - as well as some of my friends -is so far beyond what is called for even if you allow that your comments might have been misunderstood

What provokes these nasty, harassing, vile and mean responses? How is it that people feel these types of responses are OK? I don’t understand this kind of behavior and I find it uncalled for. I believe people feel that they are freer to say things behind the “safety” of the internet and a computer screen than they would ever say face to face.  I know most of us in the IC Community are on Facebook in an effort to find information, support, share experiences and treatments that have or have not worked for them and so on. It is supposed to be a place of coming together, not a place of harassment and personal attacks.  Even if we disagree with someone about an issue, this should not be cause for nasty comments that end in blocking. Often arguments get started over issues of personal experience and when someone tries to explain an alternative approach or idea, people take offense because they misinterpret the opinion being expressed that is counter to theirs. We should be able to disagree, allow for adult polite conversation where different opinions and ideas are exchanged without things deteriorating into name calling, anger and having to block each other

If all the violence in this country has taught us anything, it’s that we need more tolerance everywhere. And if those of us suffering and struggling each and every day can’t even support each other without conversations degenerating into this type of mean spirited posting, then I am at a loss of how we are supposed to help each other let alone be a kind, productive member of society

So here’s a suggestion for 2013. Let’s all make a resolution to clean up our own act.  As I said, I am not perfect, and I will work even harder to be thoughtful about what I write and how I answer questions and respond to posts. Let’s all do our best to stop this type of behavior and rise above it if we see it.  Don’t allow yourself to be dragged into this type of nasty communication. We need to be a support system for each other, not tear each other down. If we can’t help fellow IC patients, than who can?

Here’s to a Peaceful New Year for us all!

"Let There Be Peace on Earth"

Tuesday, December 18, 2012


I want to take this opportunity to wish everyone a Happy Holiday Season and Happy New Year! I'm going to take a break from my Blog until the New Year, so I hope you all have a good holiday and I'll talk to you all in 2013!

Monday, December 17, 2012


So, yesterday was our 17th Annual Cookie Walk Fundraiser. It has been a tradition in my community for so long and has always donated the proceeds to a charity or charities that are meaningful to families in our community. Last year, as I've mentioned, the organizers added the ICA as one of the organizations that will receive a portion of the proceeds, among others.

Last year we had an outstanding event, with lots of volunteer bakers and an excellent turnout and made a pretty good amount of money for each charity. This year, we had tons of bakers and volunteers to help organize the event, but unfortunately we did not have such a good turnout and so my hope to beat last year's take, was not to be.

I am grateful for the organizers of this great event and everyone that baked and contributed in some significant way to put on this fun event. I am not disheartened. The total hasn't been calculated yet, and while I already know it will be less than I was able to raise last year, it is still money that will go directly to the ICA's "Imagine No IC" Research Campaign. I know whatever we raised will be much appreciated and is better than nothing at all.

My Support Group Leader contributed so much and enlisted many friends to bake as well. The two of us put together special items for sale that could be used as holiday gifts and as a result we were able to increase the total sales by $114! Without all that effort to make special gift items, that's money we would not have raised that got added to the total take! I'm proud and thankful for that!

One of our Support Group members even drove all the way up to support our event and I am thankful for her support as well.

My family has worked very hard on this event for all of the 17 years the Cookie Walk has been in existence. For all their help, hard work and support I am also grateful. We are going to sit down next year and evaluate how we can improve upon this year's event and get back to the success we've experienced in years past.

But as I said earlier, any money raised is money the ICA didn't have before, so I am grateful for what we did make. I have asked my friends and family not to give me presents for Christmas and donate to my campaign so I am hopeful I can add to the money raised yesterday via my personal Fundraising Campaign!

My thanks and gratitude to all who worked so hard to put on this great event and to those who came out to support us!

Me and my IC Support Group Leader, Barb at the ICA Table
at the Cookie Walk!

Saturday, December 15, 2012


Tomorrow, Sunday, December 16th from 12 Noon – 3PM is the 17th Annual Prairie Crossing Cookie Walk, which will be donating a portion of the proceeds to the ICA through my personal ICA Fund Raising Campaign. I am so excited and hope we get a good turnout and raise some good money!

My Support Group Leader has enlisted the help of many friends and in addition to all the goodies baked by Prairie Crossing Volunteers there should be lots of yummy goodies to purchase. My Group Leader and I have also put together special items that are specially made and packaged to give as gifts. We hope this will help increase the total dollars raised.

I wasn’t able to bake as much as I did last year, but with my Mom’s help I got some cookies made and I’ve got some great gifts that I hope will increase the money we raise!  I’ll be taking pictures and maybe even some video of the event and will post that on my Blog so everyone can see some of what our wonderful event is all about.

Wish us luck and lots of sales tomorrow! All the money we raise that is donated to the ICA will go directly to the ICA’s “Imagine No IC” Campaign so 100% of the money goes directly to IC research!
Sell, sell, sell!
Don’t live in the Grayslake, IL area?  You can still make a donation to the ICA via my ICA Fundraising page here:

Also, be sure to check out the ICA’s Fundraising Toolkit to get ideas on starting your own fundraiser!

Friday, December 14, 2012


Today is a very sad day for America with the school shootings and loss of such innoncent children. So, in honor of this awful loss, I dedicate today's page to those who were lost, many way too soon.

Consider this a moment of silence in their honor.

Thursday, December 13, 2012


As I reflect back on this year, I look at it through two completely different lenses. On one hand, it has been one of my most difficult and challenging years since being diagnosed with IC. Not only have I been battling chronic UTI’s – not just this year, but for 3 years now – all year long, but one of my old InterStim died and I had to have surgery last month to replace it. I have really been struggling emotionally with the constant battles with my health.  I have found that I am more emotional this year and really having to push myself mentally to fight to stay positive. My retention is worse, my pain is worse and I can’t do my instillations at home anymore. I have spent so much time in doctor’s offices this year; it seems I’m there more than I am at home. So, this lens is where I view my struggles.

But on the other hand, I have so much for which to be grateful. First and foremost, I am grateful for my “sainted mother”! She is a never ending source of support in so many ways. She drives me to all my doctor appointments, cooks my meals most of the time, and is the best nurse a daughter could have! I am grateful for my entire family, who also support me in whatever way they can and just knowing they are there for me, means more than words can say. My family encouraged me to start this Blog and I am grateful for that and I hope that it is a source of encouragement, inspiration and information for other IC patients.  I have a small group of amazing friends that are supportive and understanding that have stuck by me since being diagnosed and go out of their way to keep in touch and let me know they are there for me. I have a great medical team that never gives up and keeps doing all they can to help me. My psychologist has been invaluable to me this year and I am grateful to have her among my team.

I am grateful for my IC family; my local IC Support Group Leader who is a never ending source of encouragement and inspiration! I am grateful for my IC Facebook and Blog friends who are always encouraging, supportive, willing to share information and help everyone with IC even through their own struggles. The support for each other is a constant source of inspiration to me and gives me the strength to forge ahead. So this is the lens where I view the good things in my life.

I think many of us would say we have similar experiences.  We always have our struggles and challenges, but hopefully we also have a support system of family, friends, and IC friends that hold us up when we need it most.

As this year comes to a close I am taking time to reflect and try to focus on the lens of gratitude. I could not have gotten through this year without all the support I have received. My love and thanks are what I want to share with everyone who helped and supported me. My heart is full and when I think about that, it always makes me feel so much better about everything.

May you all be looking at this past year through the lens of gratitude as well.

Wednesday, December 12, 2012

Monday, December 10, 2012

Sunday, December 9, 2012


“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, 
“I will try again tomorrow.”
 Mary Anne Radmacher

 "Only Time" - Enya

Saturday, December 8, 2012


I posted the other day about my Personal Fundraising Project that I am working on and my Community Cookie Walk, from which a portion of the proceeds will be donated to the ICA "Imagine No IC" Campaign. I am blessed to live in a community that is happy to help support me and the ICA because they know of my struggles and want to help.

I often talk about ways in which we can all go about raising money for the ICA and how simple it can be. So I thought I would share the email that I just sent out to family and friends asking that, instead of getting me a Christmas gift, they instead make a donation to the "Imagine No IC" Campaign using my Personal Fundraising page on the ICA website. Last year, as I said in my previous post on fundraising, simply by sending out an email like this, I was able to raise over $400 for the ICA.

Here's the email I just sent out to my family and friends. I hope it inspires you to consider setting up your own fundraising page, as I urged in my previous post, and see what you can do to help raise funds for the ICA too! 

"Dear Friends & Family: As many of you already know, I am continually trying to raise awareness and research funds for Interstitial Cystitis through my Personal Fundraising Project for the ICA. I have written about this before and with this being the Holiday Season, once again I am asking for your support.

Christmas is rapidly approaching, and I wanted to take this opportunity to make a very special request.  If anyone is considering purchasing a Christmas gift for me (or even if you weren’t) I am asking that you PLEASE DO NOT buy me a present, but instead make a donation to the ICA as a tribute to my ongoing battle with IC. Truly, this would mean SO much more to me than any other gift I could ever receive (and a big plus – no shopping involved!).

A federal grant funded through the Centers for Disease Control and Prevention (CDC) IC Program provides approximately 50% of the ICA’s budget.   With the threat of significant across-the-board cuts to health programs in the federal budget (sequestration), it is now more important than ever to urge Congress to protect funding for all medical research, including research for interstitial cystitis (IC).

Sequestration will result in massive cuts to the FDA, NIH, and CDC—federal agencies that fund and support IC research and awareness. It also includes policy changes that could hurt IC drug development in the private sector. The tremendous strides in IC advocacy we have made will be severely impacted if sequestration goes into effect this January!

If these cuts happen, it will not be possible to keep the ICA’s mission alive, and continue to help patients like me, without additional fundraising through the generous support of people like you. So, everyone in the IC Community is working together to help keep IC Awareness, advocacy and research going by raising funds for the “Imagine No IC” Campaign!  In addition, IC patients have been asked to Tell Congress to increase—not cut—funding for IC research and awareness programs. Time is of the essence!

Since becoming disabled, I have become a strong advocate for IC and the need for better treatments, doctors, fundraising and awareness. I am a Patient Advocate and help other women and men diagnosed with IC by talking with them on the phone. I provide online support and have helped my Support Group Leader get our local Support Group off the ground and we have continued to grow over the years. I am a Member of the Interstitial Cystitis Association, which is the ONLY nonprofit association dedicated solely to improving the quality of healthcare and lives of people living with Interstitial Cystitis (IC). Recently, I also started to write my own IC Blog in an attempt to help provide information, support and encouragement for others suffering with this disease. Here’s a link to my Blog if you’d like to check it out! There are also some videos I created posted on my Blog which can be viewed by scrolling down the Blog page to the link to my YouTube Channel.

I sincerely hope that you will consider making a donation to my Campaign as a gesture of support for me for Christmas and to help support the battle that all of us suffering from this painful, incurable and difficult to treat disease struggles with every single day.  I have set up a link on the ICA’s website to my Personal Fundraising Page so that those wishing to donate can do so easily. I know in these tough economic times, it’s difficult for many to make charitable contributions, but if you had considered making a charitable donation this year, I hope you will consider the ICA as the organization you choose to support.  I have instructed the ICA that 100% of donations received through my Fundraising Campaign go directly into the “Imagine No IC” research fund; no monies will go to administrative costs but solely to research. If you have any questions, please do not hesitate to contact me.

Here is the link to my Fundraising page on the ICA website where you can make donations.

Thank you for considering my request and I hope you all have a Merry Christmas and Happy New Year!