HAVING IC & GETTING SICK(ER) IS REALLY HARD!

If you read my last Blog, you know I have a nasty case of Bronchitis. On Friday I saw my Primary Care and he prescribed an inhaler, antibiotics, over the counter Mucinex and told me if I didn't feel improvement by today I was to call him.

Well, woke up this morning and did a check of how I was feeling and made the call. Not doing any better really. It is a real challenge for any IC patient, already struggling with their IC and often multiple chronic conditions to treat these other illnesses that pop up. Many of the treatments for things like bronchitis, viruses, the common cold and so forth are that many cause our IC to flare. I know many IC patients are always asking the question "what does anyone take when they have a cold?". 

Well, I really give doctors fits because on top of my IC issues, I suffer from cardiac issues and epilepsy, both of which require I take medications to treat them. For example, due to my cardiac issues, I cannot take any medications that can cause a rapid heart beat. Well, the inhaler the doctor gave me did that, so I had to stop it. I can't take the cough suppressants he initially wanted to prescribe because they contain ingredients I am allergic to. He found one he thinks will help that won't make me sick, so we'll give that a try. Now he also said we need to move on to a steroid and a different inhaler that he thinks will be OK for my heart. So my sainted mother has to run around again today and get all my meds. 

Even worse, I felt I needed to call my IC doctor's office and cancel my appointment for tomorrow. I was to have a 1 hour programming session for my InterStim and get my weekly instillation. There is no way, feeling as weak and exhausted as I do, that I can work on programming for an hour. I also don't want to expose others to my germs, so it's best I stay home. But now I don't get to have my instillation and I really could use it. All this coughing hurts as it is, but my bladder really doesn't like it. So an instillation, at least for me, is something I could really use right now. I'll have to deal with that now as well.

I know so many of us work hard to avoid getting sick because when you add that to having IC and all the other issues many of us deal with, it just makes things that much worse. My body already hurt all over and now after coughing and wheezing for a week, I am beyond exhausted. Not being easy to treat just makes these things so much more challenging.

But, my doctor is working with me, trying his best to help and we have to take it one step at a time. If I am not seeing improvement in about 3 days, I'm under orders to call him back and let him know. At that point, he said he'd want a chest X-ray. Let's hope this new plan helps. My bladder can't take it and I'm just wiped out.

Having IC and getting sick(er) is hard and I would really appreciate it if these nasty germs would set up housekeeping somewhere else!!!

I HATE GETTING SICK(ER)!

As if IC and all its associated conditions weren't enough for us to deal with, getting sick with a virus or cold just makes everything so much worse! As most of you know by now if you're a follower, I have a nasty case of bronchitis and have been coughing for days! It hurts so much and aside from feeling like I'm going to crack a rib from the coughing, my bladder doesn't like it much either! 

I saw my Primary Care doctor yesterday and he confirmed I was extremely congested and needed to treat it aggressively. So I have an antibiotic, an inhaler and over the counter Mucinex. He told me if I'm not better by Monday or Tuesday to call him and he'd want a chest X-Ray. I'm hoping it won't come to that!

I am taking the weekend to be a patient - well, more so than usual! At least for today, I'm not even getting out of my jammies; I didn't make my bed in case I want to take a nap. My "sainted mother" is waiting on me not allowing me to do anything; bringing me my meals and anything I need. She even brought me our bell to ring if I need anything. I am so blessed to have such a great Mom (a plus, she's a retired Registered Nurse!). She already takes care of me with all my IC and related issues and when I get sick, she kicks it in to overdrive. She is the best Mom! I don't take it for granted.

I have no idea how I got this. I avoid sick people like the plague. I don't really go anywhere except my IC doctor's office. Family knows to stay away when they are sick and are great at watching out for me and telling me to steer clear. But I guess I've been lucky. I haven't had a cold or anything like this in a very long time, so I guess it was bound to happen. I'll take my medicine, rest, drink my water and hope we can kick this.

But seriously, I HATE getting sick(er)!

POSITIVE AFFIRMATIONS!

If you read my Blog, you know that I am a big believer in the use of Positive Affirmations and Inspirational Quotes. I found this great website with an article on using Positive Affirmations, what they are, do they work and how to use them. I wanted to share it with everyone, as I feel this technique can make a huge change in how we cope and live with our IC. I hope you'll read the article, give it a try and see if using Positive Affirmations can change how you think and feel! 

Here's the link to the story:

Positive Affirmations

AUA COVERS IC IN FALL ISSUE!

AUA GLOBAL CONNECTIONS MAGAZINE

Fall 2013 Issue Covers IC!

I have been anxiously waiting for this to become available online so that I could share it with everyone! The American Urological Association (AUA), who most IC patients know for the AUA Guidelines on the Diagnosis & Treatment of IC, publishes a magazine for its members (much like the ICA does for its members) several times a year. This is a professional medical magazine for doctors and healthcare providers.

The Fall Issue of the AUA's Global Connections magazine COVER STORY is on IC! And as if that wasn't exciting enough, because I was able to get the AUA to follow me on Twitter, when working on putting this story together, they contacted me to ask if I would contribute to the story! Would I? Heck Yes!

This has been in the works since August and I didn't want to say anything until the story was actually published because one never knows if something will happen and it won't come to pass. Not to mention, I had no idea if the quotes I provided would be used or end up on the "cutting room floor" as the saying goes.

I am very excited to see IC get such an important and thorough story done in a professional medical journal, for doctors, not to mention that it's the Cover Story to boot! To be asked to be part of this important story means the world to me. My part is very small and at the end of the article, but to be given the chance to speak on behalf of IC patients gives me such a sense of satisfaction. I hope this story reaches the medical audience who read this magazine and, therefore, helps IC patients get better treatments and understanding.

I want to thank the AUA for covering IC in such a major way! I also want to thank the AUA for contacting me and asking me to contribute, however small, to this story! We need all the awareness we can get, and this is a huge step toward something so many of us are always asking for: educating the medical profession! 

Here is the link to the story where you can read it. Print it out, give it to your doctor and their staff. Share it with family and friends who you feel need to see something this significant about IC to fully understand it! 

http://issuu.com/auamarketing/docs/globlalconnectionsfall2013sm

This is a screen shot of the Magazine Cover;

I think the picture is a perfect visual of what having IC feels like!

IC GAL'S UPDATE!

MY TOP 5 FAVORITE IC THINGS!

1. Lidocaine Ointment! I could not live without my Lidocaine Ointment! The usual form used my most doctors is 2% GEL; however, my doctor prescribed for me the higher dose of 5% which comes in an ointment. I LOVE this stuff! I use a big blob of it, and using a latex glove just slather it all over the entire area, my vagina and urethra and surrounding skin. It numbs everything and when I am having a flare, my burning and irritation are at their worst, this is my Number 1 favorite thing!
2. My Heating Pad! I couldn’t live without my heating pad. Some people prefer cold and others like me prefer heat. For me, this is very often used in conjunction with Favorite Thing #1. Often, after applying the Lidocaine Ointment, I will go sit down and put the heating pad between my legs and it just does so much to help relieve my pain. These two things make the top of the list of my Favorite IC Things!
3. Hydrophilic Coated Catheters! I have to self-catheterize at least 5 times every day. I always have urethra pain (See Favorite Thing #1) so finding the right way to self-catheterize and minimize the discomfort was a huge issue. My doctor’s office found these catheters and gave me some free samples to try and it was life changing - really! They are the greatest catheter invention as far as I’m concerned. No lubricant is needed and I love them! Having to use catheters every single day, these made my life so much easier. They are super slick and insertion is practically painless. Again, I could not live without them so they make my List of Favorite Things for this reason!
4. Bladder Instillations! These are my life saver! As someone who can’t take any form of pain medication, this is how I manage my pain and they really do the trick! Once that cocktail hits my bladder, I can literally feel my entire body sort of “unclench” and relax a bit as the pain subsides. It took some trial and error, patience and perseverance to find the right cocktail, but it paid off in the end and we found what works for me! Love my instillations!
5. InterStim! I have two and for me, I don’t know where I’d be without my InterStim. Before I got them, I was voiding 60-70 times per day and up all night. With my 2 InterStim we have been able to get that down to between 25-30 voids per day, which is a huge improvement. Do I wish I could get my voids lower? Of course, but when I realized that we had managed to cut the number of voids by better than half, it was an “ah ha” moment for me. That’s a huge improvement and one I was praying for when I was at my worst. I’ll take it! Learning to adjust to these strange devices in the early days was strange. But they have become something I barely know are there anymore and they are something I am glad to have help manage my symptoms! Favorite Thing #5!

These are MY personal Top 5 Favorite IC Things! Things I couldn’t live without to help me manage my IC.

What are YOUR Top Favorite IC Things that you can’t live without? Share them with us all by commenting in the comments section below this post!

FINDING A WAY TO PARTICIPATE EVEN WHEN IT HURTS!

This is going to be a busy weekend. We have relatives coming to visit for the weekend and we are all looking forward to seeing them. It's been so long, that I think most of us have never met their two young children! Mom has been busy for the past few days preparing for their visit; grocery shopping, cleaning, and so much more. 

As I'm sure you can all relate, I try to help with all these preparations, and I managed to do a few things around the house and I am TRASHED! I am in so much pain right now, I'd rather go back to bed. But, I'm showered, hair washed, clothes on, and I will relax until they arrive.  Just sitting and visiting will take its toll, but I will do it. Maybe since their youngest isn't even a year old, there will be napping opportunities for us both! 

Tomorrow, our whole family will come for a big dinner in their honor. It's nice when we have these dinners. It's so great to spend time with family even if it's hard. It feeds the soul, even if my body is yelling back at me to go lay down! In these cases, my soul speaks louder than the pain and I find a way to participate. 

So until they get here, I'm going to close my eyes and rest. I will enjoy the family time regardless of how much I hurt and it will be worth it. Some things just are; this is one of those things! 

ICHope MODULE - FEELING MORE POSITIVE & MORE IN CONTROL!

Assessment and Reflection

It’s been 30 days and as the ICHope Module recommends, I went back online to re-take the assessment portion of the Module.  

As I completed the questions in the first 10 percent of the assessment, I was told that based on my answers, my pain level is in the severe range, which is the same as it was 30 days ago. The Module recommends that I talk with my doctor about my progress, which I am actually doing. I feel good that, even though there has been no change in pain level, I am actively working on this with my doctor as the Module suggests. 

The Module helps with three important areas when it comes to helping us “manage our pain”:

1. Finding and working with a healthcare provider who is committed to helping you manage your IC pain.
2. Doing what you can do to manage your pain.
3. Staying hopeful and empowered.

For me, I feel I already have #1 worked out. My doctor is committed to helping me and is always looking for ways to manage my pain. He has never given up on me, where I believe other doctors might have a long time ago. This is a never ending challenge for a patient like me who doesn’t respond to pain management therapies, but my doctor and I always discuss this at every appointment. It is ever present, and I am comfortable with where we are in this process.

However, #2 and #3 are areas where I feel the Module gives me, personally, the most benefit. I am doing all I can to work on improving my pain, including being actively engaged in the process as recommended. The Module gives me key tips to help me find strategies to cope and remain positive. Proceeding through the assessment for the second time reinforces the things I know I need to work on and keeps the strategies in the forefront of my thinking. 

These are all strategies I have learned over the years and have talked about in therapy and written about in my Blog. However, to see them in this Module really did two things for me. It made me realize that these are scientifically proven techniques that can really make a difference in how I manage and cope with my IC pain and also helped me see I am heading down the right path.

By going through the assessment a second time, I discovered that I have made progress in certain areas of self management and will continue using the tools and working toward making necessary changes. In other areas, I found out that I am now in the Maintenance stage, which means I am doing what I need to do in order to manage and control my self-care strategies. Repeating the assessment gives you an opportunity to see where you are in the process of self management and get suggestions about finding alternatives if a particular strategy isn’t working. If you are stuck in a certain stage and need to move on to the next, the Module gives you the tools to create an action plan.

I loved the section at the end of the assessment where you can evaluate your self-image. This is something that has changed for me over the course of my IC journey. I started therapy because I was feeling powerless, defeated, negative—all things many of us go through. By using the Module, I realized that I am moving the needle on these feelings. I am more positive and more in control of my care—I no longer feel hopeless. To be able to actually see that I have made progress in the area of self image is really empowering. 

I hope everyone is working with the ICHope Self Management Module. There is so much to be learned about yourself, where you are emotionally in dealing with your IC pain, and ways to make changes!

ICHope Module

http://www.ichelp.org/ichope#.UnvuiJRgb0Y

Be The Change

http://www.ichelp.org/file/documents/Be-The-Change.pdf

You can also read this on the ICA Voices of Hope Blog

http://www.ichelp.org/page.aspx?pid=304#.UnvvRZRgb0Y

MY JOURNEY FROM IGNORANCE TO EDUCATED PATIENT!

Therapy session today with my psychologist. Had a lot to talk about as usual. I think most IC patients could use up a one hour therapy session and wonder where that hour went. Happens to me every time!

An interesting topic came up in our session today. We had been talking about how long I have had IC and how long after that I began therapy. I was diagnosed with IC 11 years ago this month and began therapy 7 years ago thanks to a referral from my IC doctor.

My Mom has always taught me to be an educated patient, but I had never really needed to put it into practice much. Mom is a retired registered nurse and has always been the "go to" person when trying to figure out if whatever complaint I had warranted a visit to the doctor. If Mom said go to the doctor, well then that's what I did!

I was aware but not fully aware, of how much I was going to the bathroom 11 years ago. I just figured I was drinking too much Diet Coke, plus I was going through peri-menopause and knew that an increase in trips to the bathroom happened around then. So I was just putting it in the back of my mind. Until a family vacation. It was car trip from Illinois to Vail, Colorado. On the first day out, there was a long stretch where there was no place to pull off to use a bathroom. In the past, I could hold it and make it to wherever the next rest stop was. Yeah, I'd hurry in to the bathroom, but it was "normal" discomfort. This time, when we finally stopped, I was near tears. I was in so much pain that when I started to get out of the car, I cold barely stand. It burned when I urinated and my bladder hurt so much! Even with that much pain, I just figured that's what you get for drinking that Diet Coke in the car knowing we would have a long stretch without access to restrooms.

Toward the end of the trip I didn't even ask my Mom about all these visits to the bathroom. She came to me and said, this isn't normal - go to the doctor! It was then I really woke up and realized this was a problem and I needed to go see a doctor. 

Cut to my first appointment with my new Urogynecologist back in November 2002. He diagnosed me on that first appointment with Interstitial Cystitis. What? What's that? Thus began the long 11 year journey from ignorant patient to educated patient advocate and all the way to this Blog, fundraising and more. I am blessed with a wonderful doctor. He spends as much time as I need, even after all these years, to answer every single question I have. He has never rushed me through an appointment and most important, has never, ever, given up on me when I believe many other doctors would have. I credit his caring, concern, kindness and willingness to help me understand my medical situation for educating me about IC. 

Don't misunderstand, I did plenty of research on my own. I was always like that, but as my struggle with IC, treatments that we tried and failed, went on I became an avid researcher so that I could understand what was happening to me and what to ask my doctor about during our appointments.

So back to the topic that we discussed during my therapy session today. I realized that, now, having gone through this 11 year IC journey that went from bad to worse for me, that I am glad I did not know then what I know now.

If you follow my Blog, you know I am a huge advocate of becoming an educated patient and I still believe that. Learning all I could as I went through this process was an important part of my care. I always asked - and still do - tons of questions. Bring in information to ask my doctor about, and take notes. 

But, what I'm glad I didn't know back then was what this journey would entail. What I would end up going through. How many surgeries I would have. That I would have to sell my home and eventually end up on disability. I'm glad I didn't know this is where I would be 11 years later.

I realized that while I am a bit of a control freak; HATE waiting around for answers and test results etc. I am glad I didn't know how difficult a journey this would be. It has been a journey for me. One that has taught me so much. Taught me to be my own best advocate. To become as educated about my health as possible. To ask questions and speak up for myself. 

But that's different than knowing what the road ahead would be like. And I'm glad I didn't know it would be as bumpy and winding as it has been. I'm OK with that. I said to my therapist today, what good would it have done me to know in advance that this is where I would end up? I don't think it would have helped and might have made the journey harder.

Of course it's all hypothetical because we don't have a crystal ball and none of us can know what lies ahead in our personal IC journeys. So it's really a moot point. But I really felt my journey has been an interesting, albeit a difficult one.

Going from what I now consider total ignorance to what I am told by all my doctors is an extremely educated, self aware, informed patient has been a process. I may not have wished for this to be where my journey has taken me, but the journey is not over yet. Who knows where it will end. It will be whatever it is. I don't need to know today what tomorrow will bring anymore. One day at a time and never giving up; that's my journey now. I'll never stop learning and asking questions about my treatment and care. But I don't spend a lot of energy on two issues: why did this happen and what's going to happen tomorrow?

The journey continues!

INSPIRATIONAL QUOTE & VIDEO FOR THE DAY!

“We can’t escape pain; we can’t escape the essential nature of our lives. But we do have a choice. We can give in and relent, or we can fight, persevere, and create a life worth living, a noble life. Pain is a fact; our evaluation of it is a choice.” ~ Jacob Held

I know this is usually a Sunday thing on my Blog, but I have not posted since Friday. As many of you understand, I have been dealing with my own issues, both physical and now Disability related as well. It's been a frustrating few days, as I am sure everyone can relate.

I needed to remind myself of what the above quote's message is. I need to dig deep, persevere and keep fighting and not allow myself to give in. I found this quote particularly inspirational and needed it today. I hope anyone reading this feels the same.

As anyone who reads my Blog knows, I am a big believer in using inspirational quotes, positive affirmations, prayer if that's who you are, to keep myself from allowing the negative to take over. 

No matter how bad the day is, there is always tomorrow and I can CHOOSE to get up, put one foot in front of the other and keep going.

I don't have a choice - WE don't have a choice - about having IC. But we do have a choice about how to learn to live with it. It's not easy; it's always a work in progress. But it's one worth choosing!

Here's to a better day for each of us!

Some of you may have seen this before, but it's been a very long time since I created it and I felt it was appropriate to day's post. I hope you all like it.

http://www.youtube.com/watch?v=9-VVgYevtCY

NEW FDA RULES ON PRESCRIPTION PAINKILLERS!

This has been all over the news this week, on the ICA Facebook page, basically everywhere you look, there is a story about the New FDA rules on prescription painkillers! It is said that these new rules could effect over 47 million Americans! This is an extremely important issue for many IC patients who suffer, not only with their IC pain, but often with pain from other associated conditions as well. This is something we all need to get educated about so there are no surprises and we can all talk to our doctors about how and if this will impact our pain management!

Here is a link to the story that was reported on the NBC Nightly News by their Chief Medical Correspondent, Dr. Nancy Snyderman. I think it's worth watching.

http://www.nbcnews.com/id/3032619/#53367673

Here's a link to the FDA Press Release on this new policy. I think it's mandatory reading for anyone that is working with a Pain Management Specialist.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm372287.htm

In addition, here are some links to stories on this important change on how these new rules will impact the many pain patients that desperately need these medications. The U.S. Pain Foundation has released a statement expressing their disappointment in this decision by the FDA and I encourage everyone to read this statement.

http://myemail.constantcontact.com/US-Pain-statement-on-FDA-announcement-of-upscheduling-Hydrocodone.html?soid=1103157487426&aid=2QPUX07JIyI

http://commonhealth.wbur.org/2013/10/fda-opioid-control-tightens

Here's a link to the National Pain Report's comments on these new rules, along with the story of one pain patient's life with prescription pain medications and her feelings on this new rule.

http://americannewsreport.com/nationalpainreport/fda-wants-tighter-controls-hydrocodone-8822114.html

http://americannewsreport.com/nationalpainreport/22167-8822167.html

As you can see, the opinions are all over the place. Some are opposed to these new rules without question; some are in favor 100%; some walk the middle ground believing safety is utmost but wanting patients who desperately need their meds to be able to get them safely, quickly and without hassle. I think everyone believes that safety when prescribing serious pain medications is extremely important. I don't think we'd find any argument there. 

But I'm not writing this to voice a specific personal opinion on this topic. I am Blogging today about this in the hope that those that these new FDA Rules will impact will read everything they can, talk to their doctors and make sure that they know what it will take to continue to have access to the care they need!

REMEMBERING THE GOOD TIMES - HAPPY HALLOWEEN!

I like looking back on all the good times before I ever had IC or knew what was in store for me. I have so many happy memories that I take joy in revisiting. And since today is Halloween, I thought I'd share one of my favorites!

Halloween 1960: Me as Little Red RIding Hood! Mom made the costume for me (sewed the whole thing) and I LOVED it! Our pumpkin that Mom carved sits on the old "Hi Fi" in the background! Back in the "old days" we used to sit together and have dinner first, waiting for it to get dark. Back then, as children, it seemed to take forever for darkness to fall. Then my older brothers and I would just head out (without Mom or Dad mind you!) to go Trick or Treating! Back then, we got FULL SIZE candy bars; they hadn't even invented the minis that we give out today! After we were done, we'd come home, dump our loot out on the floor and trade with each other what we didn't like for something we did like! It was always a win/win for me and my brothers!

I look back at the fun times like this one with happiness and joy, remembering what a good time we had! It makes me happy to remember these experiences whether they are this far back in my childhood, or even as an adult right before I got IC! 

HAPPY HALLOWEEN!

WHAT I GAINED BY HAVING IC!

I know the first thing that comes to mind when we talk about getting our IC diagnosis is how it will or already has, changed our lives. What we have to give up; what we've lost because of having IC. This is a natural reaction and one we all go through. We must mourn the loss of what once was; doing things we used to do without giving it a second thought. Learning what to eat and what not to eat. What are we capable of physically and what sends us into a flare. It's a lot to take in and I know many of us feel overwhelmed by it all.

Over the 11 years since I was diagnosed, I too have spent a lot of time learning to cope with the many losses of things I loved. Having to sell my dream home and move in with my parents; not being able to ski anymore - oh how I miss that; not being able to exercise or run anymore; taking my niece to the theater every Christmas. So much that I just DID before IC that I can no longer do. It is a true challenge and for me, I spend a lot of time talking about how to learn to cope with these changes with my psychologist in therapy. That has helped me a lot and for anyone struggling or feeling stuck, I always encourage trying therapy.

But today, I want to talk about what I have GAINED by having IC! Gained, you ask? Yup! There is so much I have gained since being diagnosed I thought I would share what I feel are the things that have come to me since getting IC that would otherwise not have come into my life.

• I have made so many new friends since getting IC and I am grateful for each and every one of them. Whether it's all my online friends that I have made or through my Support Group, I have a new group of friends that I would never have met had it not been for my IC. And the added plus is that each of you also has IC and we can talk and support each other in a way that those who do not have IC simply can't. We can laugh together about some of our situations, because if we didn't laugh, well the alternative is just not where I want to be. So all my IC friends help me find the humor in many situations and they support me and, hopefully, feel I support them!
• Support Group! I know this seems repetitive, but getting involved with a local Support Group has led me to so many other positive things, that I will forever be grateful for my Support Group Leader, Barb, for putting that notice up in our doctor's office. I was the first one to call her and together I helped her make her dream of starting a Support Group come to fruition! Being part of that has given me so much in return, I will be forever grateful!
• Discovering that I have the ability to help others and getting involved with the ICA as a Volunteer Patient Advocate! This has been a true blessing in my life and showed me that I was capable of being of service and gave me a reason to continue educating myself so that I could help others. Learning that I could help other IC patients has been a true gift. They always say doing something for others gives you more joy and satisfaction that you would have thought possible. It's true. I am thankful for the ICA allowing me the opportunity to work with them and talk to so many wonderful IC patients all over the country! They have given me so much in return that I will always be thankful for each person I have ever spoken with!
• Writing this Blog. My family saw the change in me as I began my Volunteer work with my Support Group and the ICA. Heard me talking to patients and the stories I would tell about talking to others suffering and the resources and information I would share. It was their suggestion that I start writing this Blog and they encouraged me that I could do it. I would never have believed, before IC, that this was something I could do. I was nervous at first, trying to find my voice and talk about what I wanted to say. And would anyone read it or pay attention? Would I just be writing and no one would see it? But I have persevered and for all of you who follow my Blog, give me positive feedback and encouragement and tell me that you got something out of what I wrote, I am so thankful. This week was a HUGE milestone for me because one of my posts from the other day has blown away all previous posts with over 1,000 views so far, and it's still growing! I cannot say how excited this has made me and how happy I am that so many have come to my Blog and read that post. I hope many of the newcomers will stick around and continue to read my Blog and share it with their IC friends. I may never come anywhere near this many views again, but I hit a goal that I never imagined I could hit, and it made my week! THANK YOU ALL!
• Fundraising for the ICA! As we all know, research funding is something we desperately need. I never imagined that I could become a passionate fundraiser but I have! I have managed to raise a little over $3,000 for the ICA and all without doing anything complicated or created a lot of hard work. I am so grateful for everyone who has made donations to my Fundraising Campaign https://www.ichelp.org/sslpage.aspx?pid=1113. It has meant so much to me that friends and family supported my efforts and made donations to my campaign! This is something that has become a regular thing for me. I write a letter that I email to all my friends and family around the time of my birthday and Christmas and I ask that they not buy me any presents, but instead make a donation to my ICA Fundraising Campaign. I also have been able to get the ICA to be part of my community's Annual Holiday Cookie Sale and raised funds that way. Because I have such wonderful neighbors who have learned about my IC through the annual cookie sale, when my Mom and I had a garage sale recently, neighbors brought things over asking us to sell them but to keep the money and donate it to the ICA! There are just so many wonderful and easy ways to help raise money for the ICA and I have been touched by so many people's generosity and kindness in helping me that it brings me to tears.
• Raising Awareness is something that I didn't know I could either. But it is something I have become passionate about. I use Twitter (@Catwoman720) often and as a direct result of doing so, I have been contacted by several organizations asking that I share my story or submit a video. For those that may not have seen them, here are some links to some of my Awareness stories that have been published online:

http://www.thedoctorweighsin.com/living-with-interstitial-cystitis/

http://americannewsreport.com/nationalpainreport/my-story-living-with-interstitial-cystitis-8820940.html

http://www.youtube.com/watch?v=I87ZiCWgAZY&list=PL75A211043FCD0285&index=2

• Raising Awareness is something anyone of can do and I know others are doing it too. Thanks to Elizabeth Bingenheimer's efforts at raising Awareness, she was invited to appear on The Doctors and they recently filmed her cystoscopy with hydrodistention and will be doing a follow-up episode on IC and her story in the near future. I know others Blog, Tweet, write letters and more so let's all continue our joint efforts at raising #ICAwareness and imagine what we might accomplish!
• The support of my family and friends has been such a blessing. I know how lucky I am to have such a great and supportive family and a very small, but close and supportive group of friends (BIC - Before IC) that have stuck by me and make accommodations to my needs so that we can still stay close and visit. You find out who your true friends are when you get sick, and for those that have gone out of their way to understand and support me, there are just no words sufficient to express how I feel about them!

It is not easy to avoid the daily struggles each of us faces in learning to live with IC and associated conditions. But if we stop, take a moment and think about it, maybe you too can find what you have GAINED by having IC!

IC FOR BEGINNERS - TOP 10 THINGS YOU SHOULD KNOW!

OK, so you've been told you have IC. Now what? Well, hopefully you have a knowledgeable doctor that can work with you to find the best treatments that help you with your symptoms. But I thought I'd share my Top 10 list of things about IC for Beginners I believe you should know!

1. Diet: This is an important one. Read everything you can about IC & Diet and how to go about doing an elimination diet to help you figure out your personal trigger foods. Steer clear right away of all caffeine, soda, artificial sweeteners, anything Cranberry, citric acid, coffee, wine. At the bottom of this post will be a link to the ICA website where you can read more about this. 
2. Intimacy: This is a tough one. Intimacy is a major issue and challenge for a lot of couples where one of the partners has IC. Below is a link to the ICA website with some good information on intimacy issues.  I think there are some excellent tips to be found here. Also, a good physical therapist that is knowledgeable about IC and chronic pelvic pain should be able to help you with this issue. But if you can also find a sexual medicine specialist that is a good option as well. Just in case, I’ll post the link to the ICA website on this subject – maybe you’ll find a few tips to help.  I can also recommend a good book that was written by a former member of my support group and her husband. It’s called “Please Understand: The Interstitial Cystitis Guide For Partners” written by Gaye and Andy Sandler. You can buy it on Amazon.com.
3. Ice or Heat: If you are having pelvic/bladder pain, or urethral pain, vulvar/vaginal pain then Ice or Heat can be real life savers. Each of us is different so find which of these works for you. I personally love heat and my heating pad. But I know IC patients who love Ice even taking Ice packs with them on car trips or wherever they go. The same can often be done with a heating pad. Hot baths can be great as well. Some people like them with Epsom salt, others want nothing but water so use caution when adding anything to your bath. Some are easily set off by soaps with scents added so know what you can and cannot tolerate. I love a nice hot bath or even a shower if you don't have a soaking tub.
4. Baking Soda:  A glass of water with a teaspoon of baking soda has been reported to help reduce burning and flare symptoms. The ICA website page on Flare Busters is a great resource 
5. Drink Your Water: So many newly diagnosed IC patients have a tendency to stop drinking altogether. This is the worst thing you could do!  You need to drink enough water to keep your urine diluted because concentrated urine can increase your pain. Not drinking enough water can also cause dehydration, which puts you at higher risk for constipation, urinary tract infections, and other health problems. Eight glasses a day of water is recommended. However, talk with your doctor about how much water you need to drink. Some IC experts recommend keeping a bottle of water with you and taking a sip every 5 to 10 minutes.
6. Get Educated: The best thing any IC patient can do is to read everything you can on IC and related conditions. Don't hesitate to write down questions to bring in to discuss with your doctor or print out things you have read to ask about so you don't forget to ask something you wanted to cover. This will also help you make the most of your time with your doctor. Take notes during your appointment too. You want to remember everything you talked about during your visit, so taking notes is an important tool to help you.
7. If It Works, Don't Stop: If you find a treatment plan - whatever that may be - if it's working, don't stop! Some patients think that if they feel better they can stop whatever treatment has gotten them there. Don't ever stop your treatment plan without first discussing it with your doctor. But if it's helping, chances are if you stop, you'll wind up back at where you were when you started so as they say - if ain't broken, don't fix it!
8. Find a Support Group: Look for a local Support Group in your area that you can join. There is a listing on the ICA website and I'll include a link below with the other links. See if there is one in your area or close enough for you to join. This can be a tremendous source of support, encouragement and information. If there isn't one in your area, consider starting one yourself. It's not hard at all and again, the ICA can help and they have a FREE Toolkit to help you get started. Often focusing on doing something positive like this can make all the difference in learning to cope with our IC.
9. Become an ICA Member:  If you can afford it, become a member of the ICA! The ICA is the ONLY nonprofit association dedicated solely to improving the quality of health care and lives of people living with IC! If you can't afford to join yourself, ask friends and family to pitch in and give you a membership as gift instead of presents for your birthday, holidays or anniversary. Save your change for a year and see if you've got the $45 it takes to join! Help support the IC Community by supporting the ICA!
10. ICHope Module: I've Blogged about this great new tool on the website. This new FREE tool for IC patients that we can use ourselves at home to find ways of learning to cope and strategies for dealing with our IC and pain is something that I think every single IC patient can benefit from! Link below!

These are my Top 10 things I believe every Newly Diagnosed IC patient should know about; heck all IC patients could find something here that I believe is useful. Below are links I referenced in the Top 10. I hope you will take some time to check them all out, read up and become your own best IC Advocate!

http://www.ichelp.org/

http://www.ichelp.org/ICDiet

http://www.ichelp.org/page.aspx?pid=351

http://www.amazon.com/Please-Understand-Interstitial-Cystitis-Partners/dp/097055902X

http://www.ichelp.org/ICFlares

http://www.ichelp.org/Page.aspx?pid=544#water

http://www.ichelp.org/sslpage.aspx?pid=1127

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

http://www.ichelp.org/SupportGroupLeaderKit

http://www.ichelp.org/ichope#.Um68n5TwJhQ

THIS IS WHAT AN IC BLADDER LOOKS LIKE!

THIS IS WHAT AN IC BLADDER LOOKS LIKE!

Watch this video and see if you can imagine what it feels like to

have this going on inside your bladder. This is what IC patients

live with every single day of their lives. It's Invisible; you can't SEE it;

but it's there. 

This is a comparison of an IC Bladder vs a Healthy Bladder

The IC Bladder is on the Left; the Healthy Bladder is on the Right

Those of us living and struggling with IC every day are always trying to

explain what IC is and talk about how difficult it is for others to

understand. This Blog Post is intended as my "visual aid" to help

explain how extreme and severe IC is and why it is so painful.

To learn more about IC, check out the
Interstitial Cystitis Website:

http://www.ichelp.org/page.aspx?pid=327

THANK YOU ELIZABETH - UPDATE!

Today Elizabeth Bingenheimer is having her cystoscopy with hydrodistention and The Doctors will be filming it for a follow-up segment on the show! I want to wish Elizabeth all good wishes as she heads into surgery today and thank her for pushing The Doctors to cover IC and do this follow-up! She is a true IC HERO and deserves a huge thank you from everyone of us suffering from IC! Let's show our support for Elizabeth and thank her for all her efforts and wish her well tomorrow!

If you missed the first segment, here's a link to The Doctors website Synopsis of the show. Scroll down to the section heading called Chronic Bladder Condition. You will see two video clips that make up the entirety of the segment that aired on the show. Thanks to Elizabeth's hard work, never giving up and continuing to work with the Producers of The Doctors, they are filming today's cystoscopy with hydrodistention and will be doing a follow up segment on IC with her surgery as a key part of that. None of this would have been possible without Elizabeth's dedication to raising IC Awareness for all of us in the IC community. She knows the first segment was not as thorough as we all would have liked but it was a great start. Now, thanks to her, The Doctors will be doing a follow up! This is a big deal and it's all because Elizabeth fought for all of us!

http://www.thedoctorstv.com/main/show_synopsis/1438?section=synopsis

I put up a post on the ICA Facebook page about this. I'd love to get as many "Likes" or posts wishing her well etc. as possible! Please go to 

https://www.facebook.com/InterstitialCystitisAssociation

and look for my post and "Like" it and post well wishes to Elizabeth. Let's make sure she sees all these great positive posts! Spread the word too! Thanks to all who everyone who helps let Elizabeth know how much we appreciate her going on national TV to tell her story and today, allow The Doctors the rare privilege of coming into the O.R. to film her procedure! She is a true IC Awareness Hero! 

Thanks Elizabeth!

*** **** ***

UPDATE!

Elizabeth in Pre-Op with The Doctors Producer

who filmed her procedure!

"I'm all done, procedure went well. Producer interviewed me before and filmed the entire surgery, no airdate yet because i will go on for a follow up."

OW!!!

Not a lot to say today, except, OW! Some days are just like that. Today is one for me. I just hurt. I gave myself an instillation and that helped. But I'm waiting for a culture to come back so think I may have another UTI; we'll see. Anyway, today was just one of those take it easy, not do much of anything days for me! Tomorrow is another day!

I think this speaks for itself! I just hurt.

ICHope MODULE - PART 2

Shortly after using the Module for the first time, I decided to go back and check out a few of the many tools available in the program. What I chose to focus on today was to re-watch the video of Dr. Deborah A. Levesque that was presented at the ICA Patient Forum in Philadelphia back in June. I wanted to re-watch the video and listen to her talk about what people with IC can do to help ourselves. 

Then, I read the handouts from Dr. Levesque’s presentation. The handouts contain questions to help you figure out what steps you can take to manage your care, whether you are ready to take action to improve the quality of your care, and how you deal with having IC.

I like this tool. It really made me stop and think about what I do on a daily basis. Some of the steps I am already actively doing. Some I have worked on in therapy; however, ICHope helps reinforce my need to focus on the ones I am not focusing on enough. I like being reminded, by using a tool like this, of what I can control. Having specific things that I can do to take control, to help me manage my emotions, and to handle problems that arise really helps me feel like I am NOT helpless. I can do things to help myself. 

These strategies and tools may not be a magic bullet, but whatever I can find to help me improve the quality of my life I am all for trying. I find using these tools has been a real eye opener and is something that I am going to share with my therapist next week at my appointment. The Module contains tools and strategies that are so similar to things I work on in therapy that this just helps reinforce those sessions. 

Here are links to ICHope and the video and handouts that I have mentioned. If you haven’t checked out these resources yet, I encourage you to do so. ICHope is a great tool that can help each of us take control of our own health!

ICHope https://www.ichelp.org/ichope#.UlVtMWTwJhR

ICA Patient Forum Video Featuring Dr. Levesque https://www.brighttalk.com/webcast/9263/74641

Handouts by Dr. Levesque http://www.ichelp.org/file/documents/Levesque---Worksheets.pdf

INVISIBLE DISEASE IGNORANCE STRIKES AGAIN & THE KINDNESS OF STRANGERS!

Well, today was my turn to be on the receiving end of the ignorance of living with invisible disease. It wasn't fun.

I had my weekly Instillation appointment down at my doctor's office this morning at 11AM. So my Mom drives me, and we head out an hour before the appointment as that's how far I have to go. I know, many of you go much further. It's a huge hospital and the parking lot is always crazy so finding a parking space is never easy but we managed to get one way down on the bottom level. Off we go to the elevator that will take us to the tunnel that takes you into the hospital and the professional building.

So we get on the elevator, go up to our floor and the doors open. And standing right there in front of the elevator, so close there was barely any way for me to get off, was a woman with her GIGANTIC baby stroller. I mean, some of those things should require a license plate! She was in conversation with another woman who also had a huge stroller and was with her husband and two children. So she actually had the double stroller. Both were in the way of me getting off the elevator!

Now, mind you, I'm not going after mothers here and am not making a generalization about all, but there is a segment of mothers who push those giant strollers around stores, the hospital, and many public places and just expect everyone to get out of their way. This has happened to me many times. I have also encountered very polite and courteous Mom's who do their level best to accommodate those around them. But today was the case of, I have a baby in a stroller and everyone had better get out of my way. The doors opened and she WOULD NOT MOVE; I waited a moment and tried to take a step forward - nothing. She wasn't going to move no matter what.

Now, if I was a better person, I guess I would have let it go. But I felt this was rude no matter who was trying to get off the elevator, but I was in pain, I have balance issues from my Epilepsy and it's very easy to trip and there's this huge stroller right in my way and I have to "skinny" my way past it. So as I did so, I made a remark. I said "would it hurt you to move over a little bit?" and kept walking.

Well, the woman blocking my way got on the elevator, but her friend that she was talking to was going into the hospital as well and from behind me I hear "that was SO RUDE!" This woman is with her husband and two kids in the double stroller. I turned around, looked at her and said "Yes, SHE was rude!" 

So then I get "She has a BABY" as if that's the excuse for behaving any way you want! What, a baby in a stroller means you get to do whatever you want and everyone else should just get out of your way! I turned again and said, "yes, well, that may be, but I have several disabilities, one of which can cause me to lose my balance, she was too close and I could have fallen on her baby!"

So then this woman is following me down the hall, spewing all kinds of stuff like "you have a mental problem"; "you are so rude"; "there is something wrong with you!" I forget what I said to her, but I attempted to say something to her but all I got back was "I'm glad you're not one of my clients; you're crazy". I told her I was glad I wasn't one of her clients too! Even nastier was when she pulled her husband and children aside and would not go over to the elevator bank up to the professional building since that's where I was going too and I heard her tell her child "we're waiting, that woman is icky!"

This woman made an assumption. She assumed that since I was dressed nicely, standing on my own two feet that I was a perfectly healthy individual and that I must just be rude and hate mothers or something. I know she thought that I was the one who should "make way" for her and her friend and their humongous strollers. Well, if I was getting off that elevator in a wheel chair, I guarantee you, they would have moved aside. But because I appeared able bodied, I got crap for expecting someone to be courteous and give me room enough to exit the elevator.

I got upstairs and was upset enough to tell the nurse about it. She was very comforting and reassuring as she gave me my instillation and I took deep breaths to try to let it go. But there is a very happy ending to this story.

I finish up and head down to the lobby to meet my Mom so we can leave. I walk over to where she is sitting and as I do so, I realize the woman who attacked me is sitting across the room with her family! I quietly tell my Mom this story and two other women sitting nearby overheard me telling Mom what happened. Well, they were such lovely women. They asked if it would be OK to say something to me and I said of course. BOTH of them have invisible diseases and have been attacked like I was and we all chatted about what happened. Between my Mom and these lovely women, I was so comforted and made to feel that I did not deserve what happened. I was so touched by these two women talking to me and supporting me, that we exchanged hugs. Perfect strangers brought together by a common experience that we could all relate to. As I was hugging these women, my Mom, looked daggers over at the woman who had attacked me and said to her - "we ALL agree with my daughter!" My Mom was ready to take her on, let me tell you! She didn't but, boy even though I am 58, my Mom still wants to protect her kids! 

So what started out as an upsetting incident ended with me meeting two lovely women, strangers who I will probably never see again, yet they touched my life in a positive, supportive way, and I am grateful to them. 

So after experiencing the rudeness of one, the incident transformed into a much better one where I was the happy recipient of the kindness of strangers! It changed how I felt and all of us got teary eyed! 

To those lovely women I will probably never see again, you have my sincere gratitude for stepping in to support another patient like you suffering from invisible disease that others don't understand! THANK YOU for such kindness and support!