REST DAY FOR ME!

Since it's Sunday and I intend to rest, as I said I might do, today is just a little food for thought:

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.  ~Author Unknown"

Great song by The Eagles; You Are Not Alone! Click link to listen.

http://www.youtube.com/watch?v=df9Sohowp6o

I CHOOSE TO FIGHT!

This is from one of my videos, but today it is something I am really "feeling" so wanted to share it with everyone. When I am struggling, I turn to things like this to give me inspiration and they really do help me. Sometimes it's the little things, like using a positive affirmation (this could be used as such), listening to some uplifting, happy music, practicing meditation, or using all of the above, that can help get you through the tough times. I use all of them when I am struggling and they do help me. The other day, I was struggling to stay positive, so I put my headphones on, picked some of my favorite music, closed my eyes and used my positive affirmation and within a short amount of time, I felt better and stronger and just plain happier. Something my therapist once said has always stuck with me: you cannot cry if you are laughing. The brain won't allow it. There is an actual chemical reaction in the brain that happens when you laugh or are happy and it won't allow you to cry if you are laughing. So next time you feel down, find something like your favorite music, work on positive affirmations or start recording your favorite comedies on tv that make you laugh out loud and watch them for a while. Whatever works for you.

I choose to fight; fight off the despair and fight to find the things in my life for which to be grateful and happy. They are there; sometimes we just have to look a little harder through the fog to find them!

FIGHTING THESE UTI'S!

Just got the call from the doctor's office that I have yet another UTI this year. This time it's Strep B which is the second one of those I've had in the last few months. I called the pharmacy and asked them if they could call me as soon as the prescription is ready for pick up. This has been a real struggle for me this year but I am determined to break this cycle. I talked with a good friend from my IC Support Group and she has recommended a very specific Probiotic and I am going to give a serious try. So I have ordered it and can't wait for it to arrive and see if I can change this nasty cycle. It can take some time for it to correct things, but I'm all in and going to give it my all!  I'll post a link to it from the website where I ordered it and I'll keep everyone posted on how it works for me. I'm hopeful and optimistic.

http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=RW-1056

TWEETING ABOUT IC!

So in addition to this blog, I am now getting my feet wet on Twitter to spread the word and raise IC Awareness. The ICA already Tweets often and I will Re-Tweet important Tweets they post to help get the word out. I've already started Tweeting and following Dr. Oz, Dr. Sanjay Gupta, Dr. Nancy Snyderman & Anderson Cooper. Dr. Oz recently Tweeted asking for followers to Tweet back to him about a question he posted about Fibromyalgia. I Tweeted him back about the need to understand why so many IC patients also have Fibro. Now Dr. Oz is following ME on Twitter. One never knows how you may make an impact, but social media is the way of the world and I am going to use it as much as possible to raise IC Awareness! Won't you please follow my blog and follow me on Twitter (I'm @Catwoman720). Also, if you follow my blog, it is interactive. You can post comments on my blog and make suggestions about topics and ask questions. So I hope you'll all join me in this journey! Thanks for all the positive feedback so far! All my IC friends inspire me to keep this going and use all the tools at my disposal to raise IC Awareness!

DON'T JUDGE ME!

As an IC sister posted today:  “It’s hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Never judge what you don't understand.”

While I agree with this, it also inspired me to write about my personal feelings and experiences when it comes to how we deal with having invisible disease(s).
I know those of us with IC and many other invisible diseases must deal with people every day that to us, just don’t seem to get it. Some never will and while it can be painful, sometimes we have to accept that certain people are not worth the emotional energy it would take to convince them we are sick and in pain, even though we look fine.

But, here’s my thinking on this. First, if someone tells me I look great when I feel lousy, I don’t take that as an insult or that they don’t get it. I choose to look at it as a compliment – WOW! I feel this lousy and someone thinks I look great! Whoo hooo! Thank you very much for the wonderful compliment and I smile and it makes my day! For me, when someone tells me I look great, I choose the positive path and take it as I believe it was intended and move on. I mean, I’d rather look good and feel lousy than look as lousy as I feel. That certainly wouldn’t be fun, now would it! 

Recently, I posted something on my personal Facebook page about IC and my brother’s sister-in-law not only posted a comment back to me about how much she appreciated learning about IC, but she went out of her way to find me at a recent family gathering to hug me and tell me again how great she thought it was that I shared that information and how glad she was to understand what I was dealing with! 

To me, this is an example of me thinking for years that no one ever asked how I was doing because they didn’t care, when in fact it was just a lack of information and communication. When I took the time to explain it, I reaped the rewards and love of taking the time to share my story and explain it better. 

So for me, the lesson is while we ask for understanding from others about our invisible disease, we must also put ourselves in the other person’s shoes and don’t assume they’re judging us. I believe strongly that it is up to us in the IC community to raise awareness (something we all often say is sorely lacking) and help others understand what we are going through. Those who aren’t interested aren’t worth your emotional energy! There are always going to be judgmental people in our lives regardless of our IC, so I feel we shouldn't waste the energy we need for ourselves on someone that doesn’t deserve it.

So, I say use these situations as teaching moments. Take the time to try to help others understand; you may just find one more person who you can add to your support system who will be someone you can count on in the future when you are having a hard time.

http://www.youtube.com/watch?v=dCPw05MkabA 

DOCTOR APPOINTMENTS!

Hi all! Well, today is a “doctor” day for me. I have two back to back appointments; the first is with my psychologist and the second is with my IC doctor (actually it’s a nurse appointment). These make for very long days but since all my doctors are a good hour away, one thing I always try to do is get multiple appointments for the same day so I don’t have to go all the way down there more than once in any given week. 

So, one of the things I wanted to share today is about my appointment to see my psychologist. You’ll all probably think I am “crazy” but I really look forward to my appointments with my psychologist! I have been seeing her now for about 6 years and I don’t know what I would do without her help! I’m lucky, my IC doctor referred me to her and she is right across the hall from him and I often schedule appointments with both of them on the same day. She works only with patients who have chronic pain, illness/disease so it’s a perfect fit. That can be the biggest challenge with finding a therapist; finding one you feel comfortable with and that you “click” with.  But she is fantastic and has had a real, significant and life altering impact on me! 

Like many people, when my IC doctor suggested it, the invisible thought bubble over my head was saying “Really? Me? I should see a therapist?” We all probably have a tendency to feel that way or have a similar reaction if we’re told we should consider therapy. But I recognized how sad I was, how much I was struggling with the life changes, pain and challenges I was trying so hard to cope with since being diagnosed and I sucked it up, walked across the hall and made my first appointment!  I am so grateful that I did. That was a life changing moment for which I am truly thankful. I have found a safe place to talk about all the things in my life with a professional who, frankly, HAS to listen to me! To be able to get frustrations and struggles out and find ways of coping have helped me so much. It’s amazing how therapy can impact one’s ability to handle the pain and stresses and changes we go through. She has taught me ways to cope when I am feeling down and I work to put these into practice every day. Key word – “work”! It takes work and it’s a process. For me, it’s an ongoing process and we adjust my appointment schedule based on how I’m doing. But if you, like I did, find yourself feeling hopeless, sad, crying all the time, feeling like IC has ruined your life, then I encourage you to do what I did and take that first step and find a good therapist. I don’t take any meds, so I see a psychologist for talk therapy only. In the beginning we met once every week, then it was every two weeks, then once a month. Right now, I’m going every 2 weeks because I’m struggling with frustration over repeated UTI’s. Which brings us full circle to why I am happy to be going to therapy today; I have to see the nurse and get a urine culture done because I know I have an infection again and need to talk through my feelings. But here’s the thing, if I hadn’t been going to therapy all these years, I wouldn’t be coping with this most recent set back as well as I am. So even though I feel the need to see my therapist and talk about these frustrations, I have not fallen to pieces since this latest infection reared its ugly head. That is a direct result of the work I’ve put into therapy.

So, some food for thought if you are struggling like most of us do. Find out what your insurance coverage is for mental health care, ask for a referral from either your IC doctor, primary care, or call your local hospital. You can schedule appointments with more than one and see which one you feel most comfortable with and go from there. I encourage everyone to think about seeing a therapist and if they can help you as much as mine has helped me!

POSITIVE AFFIRMATION (Repeat silently to yourself, or put it on a post it note in places where you will see it throughout the day):  “I am well; I am peaceful; I am happy.”

http://www.youtube.com/watch?v=QGJuMBdaqIw

I LOVE MY SUPPORT GROUP!

My local Support Group Meeting is coming up on October 8^th and I have to say how much I am looking forward to it! It is so great to be able to get together with other IC patients, share our stories, feelings and support each other. I always leave our meetings feeling so much better than when I got there. We all help each other.  Often we have had excellent guest speakers, while other times, we use the time to just share and talk among ourselves. It’s always a very positive and inspirational experience that I look forward to and gain strength from every time! Even when I don’t feel great and am inclined to skip a meeting, I still push myself to go and never regret it!

 If you don’t belong to a Support Group, I strongly encourage you to see if there is one in your area. The ICA has a list of Support Groups on their website, but if there isn’t one near you, then I want to encourage you to consider starting one yourself. It’s not hard at all and can start out small and build slowly.  The Support Group I belong to was started by a woman who goes to the same doctor as I do. She got the doctor to allow her to put up notices in his office, got the nurses on board so they would tell IC patients about it too. I was the first patient to call her and then another patient called her who just happens to work at the hospital where our doctor is and where we hold our meetings. Together, the three of us got our little group up and running just by our leader putting a flyer up in the doctor’s office. Then we took our flyer around to other urologist’s offices and every single one allowed us to post our flyer in their office. Our leader got our group listed on the ICA’s listing of Support Groups, which helps spread the word too. It’s so easy! Many hospitals will give support groups the use of a meeting room at no charge and that’s what happened with our group.

Slowly our group grew and now, 5 years later, we have a good size group. Not everyone comes to every meeting, as we all know and understand that sometimes we just  aren’t feeling up to it.  We welcome family members, spouses, significant others, men with IC – you name it. It’s a wonderful group and our group leader goes out of her way to make sure we get the most current information and reading materials. She has worked very hard to make our group a success and because of her taking a leap of faith, many IC patients have a great Support Group that has given so much support to so many.  She is a great source of support and inspiration to me and our group and I am forever grateful for that notice I saw in my doctor’s office!

If you are thinking about starting a Support Group, the ICA can help. They have an excellent and FREE Support Group Leader Toolkit on the website to help you get started. If you’ve always wanted to have a Support Group to go to but there isn’t one in your area, then I hope you will consider taking the same leap of faith my Group Leader did and take the first step toward starting a group of your own. I guarantee you won’t regret it and you’ll get so much more back in return. I have made wonderful friends through my Support Group and feel supported and inspired by every single member of our group.

So, think about it, check out the ICA’s Free Toolkit (I’ll include a link) and see if you want to reach out to other patients in your community! You’ll be so glad you did!

I’m really looking forward to October 8^th! I would like everyone to be able to feel the same way!

http://www.ichelp.org/page.aspx?pid=591

http://www.ichelp.org/Page.aspx?pid=386

INSPIRATIONAL QUOTE FOR THE DAY!

"Hardship, in forcing us to exercise greater patience and forbearance in daily life, actually makes us stronger and more robust. From the daily experience of hardship comes a greater capacity to accept difficulties without losing our sense of inner calm. Of course, I do not advocate seeking out hardship as a way of life, but merely wish to suggest that, if you relate to it constructively, it can bring greater inner strength and fortitude."   Dalai Lama

http://www.facebook.com/DalaiLama?ref=ts

ICA VOICES OF HOPE BLOG!

As many of you may already know, recently I was so thrilled to see a little piece I wrote posted on the ICA's website on their Voices of Hope blog page!  This is an excellent page chock full of excellent stories of hope and encouragement and everyone should check it out if you haven’t already. I am excited and hope it inspires others in their journey with IC! Mine is called "I Believe" but every story on that page is inspiring and I am honored to be among all these strong IC patients who fight this every single day! Here’s a link to the Voices of Hope page.

 http://www.ichelp.org/page.aspx?pid=304

I decided to take this idea one step further and turn it into a little video. You can link to my YouTube channel below on this blog page, but to make it easy for everyone I’ll repost the link to this video. This is for everyone that struggles every day and I hope you find a measure of inspiration in it. 

NOTE: If you want to hear the music, you have to watch it on a computer. If you watch it on a smart phone or tablet, you won’t hear the music.

http://www.youtube.com/watch?v=X7ItzFFxhaQ&feature=plcp

WELCOME!

Welcome! My IC story begins when I was on a car trip from Illinois (where I live) to Colorado for a family celebration. I noticed that I was constantly asking to stop to go to the bathroom and was suffering from pain in my bladder that I had never had before. Over the course of the vacation, my mother (a retired registered nurse) also noticed how frequent my trips to the bathroom were becoming and commented that when we got home, I should go see my family doctor.  I made an appointment as soon as we returned and I was given a referral to see a Urogynecologist. This was not a specialty I had ever heard of.  Little did I know that I was to become so familiar with this specialty and that my life would change forever.

I will never forget November 2002. That’s when I had my first appointment with my new Urogynecologist and was told I have what is called Interstitial Cystitis (IC). I had never heard of this condition and knew nothing about it. All I knew was I was going to the bathroom constantly, between 60-70 times per day and getting up between 6-8 times or more at night which caused severe sleep deprivation.  I was also suffering from chronic pelvic pain, burning on urination, urethra and vulvar/vaginal pain. My doctor began my treatment with the standard first line treatments of medications and pain management. Unfortunately, it turns out I am allergic to all these medications that were prescribed to treat my symptoms. I would become very sick, often landing in the emergency room or leaving work due to severe side effects.  Eventually, working in consultation with my doctor, I elected to have 2 InterStim sacral nerve stimulators implanted to help my urgency/frequency. For me, InterStim treatment has helped my frequency significantly. For pain, I have found success with Heparin & Lidocaine bladder instillations, but this brings with it another set of problems with recurrent infections that I am constantly working to manage. 

While I have found two treatment options that are helpful to me, unfortunately they have not been able to give me significant enough relief and as much as I wanted to continue to work, I am now on Disability due to the severe nature of my IC.

Going on Disability is never an easy decision, and it wasn’t for me. One of the best recommendations my IC doctor gave me was a referral to a psychologist to help me deal with what having IC has meant in my life, which as all IC patients know, is significant. I am blessed with a wonderful support system in my family and especially my parents with whom I now live. I did have to sell my home due to my IC, but consider myself so lucky to have parents that welcomed me into their home and insisted I make it as much mine as it is still theirs. My Mom & Dad made this challenging and disappointing life change much easier than it might have been. I am forever grateful for their love and support!

Because of the lack of information on IC, I began to read everything I could find about IC and that’s when I discovered the Interstitial Cystitis Association. Thanks to the information and the work they provide to the medical community and IC patients, I was able to get educated about IC and its treatment options and research. Through my UrogynecoIogist’s office, I met another IC patient who was working to start a local support group and worked with her to make her dream of having a local IC Support Group come true! Through my Support Group Leader and our group, I have been inspired to communicate with other IC patients and work to provide help and direction on where to find the best information on IC and its treatments and current research. And so my journey with IC continues.

My hope for this blog is that it will be a place of positivity, information, support and inspiration. I hope to post regularly; sometimes perhaps just quick thoughts and other times maybe longer pieces about topics I believe are important.

So, welcome.  If you’d like to read more about me, click on the photo or my name in the “About Me” section in the top right corner of this page. There are lots of photos and more information about me. Also, as you scroll down this blog page, you will find more things to explore. 

There is strength in knowledge and I believe sharing information gives us more strength to continue our battle against IC!

http://www.youtube.com/watch?v=AQsxHQVS_VY&list=TLZX6U6T4VtBaudEzOdhLkwbvtswIaFDcS