Thursday, January 30, 2014


I have been struggling lately to post on my Blog as often as I would like. This lung disease that is still not under control is making things so much more challenging for me on top of my IC and associated conditions.

I don't want every Blog be about "me"! I know the idea is to share our stories and experiences as we go through them. But I've felt like I have nothing to say these days since I got so sick. It even takes energy I don't really have to sit here and try to write something.

But I am inspired by so many of my IC friends who also have so much to deal with. I know I am not alone in having multiple medical issues that have to be dealt with. So many of my IC friends are struggling with multiple health issues and yet are going to work, going to school, taking care of families and so much more. Each of you inspires me and gives me strength.

This is what I hoped for when I became an IC Patient Advocate. That I would get as much back, if not more, than I would give. Writing this Blog, using Twitter, belonging to some great IC Facebook groups has introduced me to so many wonderful people I would never have met. 

I could have curled up in a ball, even today with this added medical problem, and never gotten out of bed. But I didn't feel any better if I did that. It didn't help. So I made a decision to become as active as I could and I have gotten so much in return.

Thank you for your support, encouragement and prayers. Thank you for helping each other. Seeing the help everyone shares with each other is inspiring. 

You never know where a source of inspiration may come from. I am inspired by all of you! 

Sunday, January 26, 2014


"Actually, I just woke up one day and decided
I didn't want to feel like that anymore, or ever again.
So I changed.
Just like that."

"Stand" - Rascal Flatts

Friday, January 24, 2014


November 11, 2013. If you follow my Blog or Facebook you know that I have been battling a Lung problem that has me coughing so hard I have torn several intercostals and causing severe shortness of breath and has me completely debilitated. I cannot even walk unaided. Taking a shower requires a shower chair and lots of breaks to catch my breath. Drying my hair - well that's like trying to run a marathon at this point.

November 11, 2013 - Yes, I can tell you the exact date this began! Literally overnight. I was dealing with my IC issues and nothing else one day and I woke up the next morning wheezing and coughing. It got progressively worse and, as many know, I spent 8 days in the hospital in December. 

November 13, 2013! That means this has been going on now for over 10 weeks! There is no way to describe the agony I am in. And needless to say, my IC doesn't think much of this either. 

I have been under the care of a wonderful Pulmonologist. He suggested I consult with an Allergy/Immunology expert so I did that two weeks ago. They took enough blood to fill a blood bank. But I was optimistic. The doctor thought she was sure what the blood work would tell us. They tested me for everything under the sun. So the next step was come back in two weeks and review the results of the blood test.

I saw the Pulmonologist again this past Tuesday and that was quite disheartening. I asked the Allergist to send all my lab work to the Pulmonologist (hoping for an early clue) and they did. So he looked at it all and all the test results were negative. He was actually calling the Allergist as I was leaving the office. He was also going to call a friend of his at Mayo to consult and see if I should go there or if he had anything to offer. I had yet another Spirometry test in his office on Tuesday and I am actually WORSE than the last time I saw him. He is at his wits end and feels very bad for me. I am not responding to the treatments and that has him completely at a loss. He wants me to also see my Gastroenterologist as my GERD & Hiatal Hernia MIGHT be playing a role. I have an appointment to see that doctor today.

So my appointment yesterday with the Allergy/Immunologist was very frustrating as it yielded ZERO answers. SOME of my immune system results showed I'm "weak" in a few areas and she would like to strengthen those areas. But none of the tests led us to a place that we could say "here is why/what you have".  She changed some of my meds, upped the dose on some others and changed my inhaler. The Allergy/Immuno doc thinks it may be time for a bronchoscopy which the Pulmo would do, but I asked the Pulmo on Tuesday about it and he really didn't want to do it at this point. You have to be under general anesthesia and the Pulmo said it could actually make my cough worse, so it's a double edge sword. I am very frustrated. The Allergist was going to call the Pulmo yesterday and consult again. I see her again on Feb. 4th. She told me "I'm not done with you; you are not discharged by any means". But I really have no answers still.
I have been rather absent from both Facebook and this Blog and this is why. I just don't have the energy to devote to my IC advocacy efforts and wanted to bring everyone up to date. I have received SO many wonderful messages wishing me well, sending prayers and asking after me, it truly means the world to me. Thank you all!

November 11, 2013 and counting. 8 Days in the hospital. 4 Doctor consultations with one more to go. It's still a mystery. 

Wednesday, January 22, 2014


So, I've been thinking about all the struggles we each face with our IC and associated conditions. But as I read so many posts online from IC patients all around the globe, there is a wonderful thread that I noticed. So many posts from IC patients wanting to share what is working for them. Telling their stories of success.

I want to hear from you!

Send me your Number 1, top of your list thing that works for you! What is it that you can't live without that helps you manage your IC Symptoms? When I get a good number of responses I will put them together in a new Blog post and share them with everyone.

What I'm looking for is not your history or a list of everything you've tried, but one thing/treatment that has helped you the most. Ideally, I'd like it to be a short, to the point description and no more than one or two sentences. 

I want to hear about your success, even if you still have issues, if something works for you that you couldn't make it without, I want to hear about it.

So, tell me about your Success! Send an email to me at and in the subject line put "Tell Me About Your Success".  I will only use first names and a last name initial for privacy when putting together the list for my Blog, or you can ask me to just put "Anonymous" if you like.

I can't wait to hear from you all and share your successes with everyone! Let's use our individual successes to help each other!

Sunday, January 19, 2014


"I am acting like I am okay. Please don't interrupt my performance."

"Here Comes the Sun" - The Beatles

Wednesday, January 15, 2014


So you have IC and are reading everything you can about it and one of the top things recommended as self-care is to make a diet modification. But where do you find out what you should do and what to eat?

If you are active on all the IC social media sites, you have quickly discovered about million different opinions about what you should do diet-wise to help your IC. It is a controversial topic but if you stop and take a moment, you will realize the reason for all the controversy. No two IC patients are alike and just as with all IC treatments, no two IC patients respond the same way to anything.

When I attend my Local Support Group meetings, we go around the room and ask each person to talk a little about their IC, where they are, what treatments they are following, diet etc. No two people in the room are doing the same thing. That's because no two things work for each of us. 

While much more is understood than ever before about IC and the effect diet has on helping improve our symptoms, it is still something we need to understand much more about. Thus, you will often see arguments erupt online over what people "should" be doing with their diet. People swearing they've found the diet that works and that everyone should follow because it works for them.

As far as diet is concerned, recently the American Urological Association (AUA) and the chronic pelvic pain practice bulletin of the American College of Obstetrical Gynecology (ACOG) noted that there is little research on how diet affects the IC population.  As a result, the recommended IC Diet is just that, a recommendation. Everyone is different and you must do the work and do a total elimination diet and then slowly work to figure out what your personal trigger foods are.  The food list is meant to be used as a GUIDE, a place to start. Some people can tolerate foods on the “Caution” list while others can’t eat foods on the “Bladder Friendly” list. We are all different and we each need to figure out what foods work for us. Some have found going gluten free helps them a lot, while for others it doesn’t matter at all if they have gluten products, but following the basic diet helps a lot. 

I have seen so much controversy over diet online recently and this is totally unnecessary. There are many options regarding what diet to try. Many different diet modifications that work for some, while other changes work for others.

Here's the thing. There is no one, perfect solution. But there ARE modifications that can help. We just have to be willing to do the work to find the one that works for us. 

I am not taking a stand on a particular Diet. I will leave that to each individual to figure out for themselves. But what I do encourage every IC patient to do - get educated. READ all you can about Diet changes that are recommended. If someone has found something that works for them and you wish to try it, do so but with caution and research before you do so.

Doing an elimination diet is difficult but generally proves important and worthwhile to most IC patients. Eliminating a lot of the foods that are traditionally known to be bothersome is a good starting place. Do your research. Once you've done the elimination diet, if you notice improvement in your symptoms, then you can VERY SLOWLY begin to try foods, one at a time, to see if they are a trigger for you. This takes time, patience, dedication and a real commitment to figuring out your personal trigger foods.

If you are looking for a place to START your Diet journey, the ICA is the best place to go for information and resources. Here are several links to the ICA website on Diet.

Go to these links and even on each of these pages are additional links. Drill down and read everything you can on what the ICA provides regarding diet modification.

Here's a link to a brief interview with Barbara Shorter,EdD, RD, CDN with some excellent information on IC & Diet.

As I mentioned, there are plenty of other diet recommendations to be found if you participate in any of the many IC social media sites. It is a controversial topic, but it doesn't have to be. Do the work, put in the effort, do your research and find what works for YOU! There are IC Cookbooks available online as well.

There isn't an easy answer but there is help and good information available on how to change your diet to help your IC. Proceed slowly, use caution, do your research and you just may find one of the healthiest ways we have to manage our IC symptoms!

Sunday, January 12, 2014


As I hit the 9 week mark tomorrow of suffering with this lung problem, I find I am in need of taking my own advice. So I have been working this past week to do the things I often talk about. Using my meditation, music, positive affirmations and so forth to help me cope with this seemingly never ending setback. So today, I return to my weekly Blog routine of posting an Inspirational Quote and Song that touches me. I hope they touch you too and that you find something you can use in your routine to help you cope. 

"Defeat only happens when you make the decision to stop trying. Because determination works. Steady forward motion, even if it's just a step per week, gets you there. So keep moving, even if it's only a little some weeks."

~Ken Evoy-

"The Power of the Dream" - Celine Dion

Thursday, January 9, 2014


Here's a quick little video I managed to capture that shows how bad my breathing and coughing are. I am rapidly approaching 9 weeks of this and that is not acceptable. 

I am seeing the new Allergist today and am hopeful we will learn SOMETHING that can prove helpful in getting me back on track and moving in the right direction. From the snow last week, I was forced to re-schedule my Pulmonologist appointment and can't see him for another 10 days! My Mom is ready to call him and insist on getting me in sooner; she'll get no argument from me!

Wednesday, January 8, 2014


I finally captured a mini-seizure on camera. This is a Seizure (or seizure activity). I was diagnosed with Epilepsy 5 years ago and this is just one of the milder symptoms I experience but my Neurologist has never seen. I'm going to show him this little video when I see him next.

I've certainly had worse where I've bitten my tongue and also have arms, legs, hands, feet, fingers etc. spasming and flailing, while my face goes crazy (this is mild compared to some I've had). I drop things and my legs jerk out from under me sometimes when walking. Since this lung issue came up, it seems my seizure symptoms are worsening so I am concerned about the effects all these medications for my lungs might be having on my other medications. Something I need to investigate as we do not want things to escalate.

Just thought I'd share a little of what else I am dealing with every day on top of my IC and this new lung disease

Yes, This is A Seizure

Tuesday, January 7, 2014


As many of you already know, I was diagnosed in December with Obstructive Lung Disease and it is far from well controlled. We are struggling to get it under control and I am still very, very sick. None of which is helping my IC by the way.

So today, I had a much needed appointment with my psychologist. Since being diagnosed with IC and going on Disability, I have been working with a psychologist to learn coping strategies for dealing with chronic, incurable illness. I could not manage without this therapy. But since I came down with this new disease two months ago, the challenges have been even greater. When I was in the hospital for 8 days, my psychologist stopped by to visit me for a little bit and that was very helpful. She also called me twice over the last month for 10-15 minute conversations which were also important. But I really felt I was in need of a full one hour session and this appointment has been on the books since before I went into the hospital in early December. I really wanted to keep it. So whenever I have an appointment with my psychologist, I always try to schedule one of my instillation appointments immediately before the therapy appointment. Getting my instillation before the therapy session allows me to sit comfortably for the hour without having to interrupt the session for bathroom breaks. And both doctors are right across the hall from each other. It works out well. So I had an instillation scheduled today to do this. And with all the coughing this Lung disease is causing, my bladder was begging for an instillation!

My Mom dropped me at the door and I had her cane as I am still extremely weak and cannot walk unassisted after 8+ weeks of this disease attacking me. I walked ever so slowly, stopping along the way to try to catch my breath. I was struggling to breathe before I started walking and now I really couldn't breathe. By the time I made it to the IC doctor's office for my instillation, I was gasping for air and collapsed into a chair. I was able to get my instillation and get across the hall to the psychologist but by then it was time to pull out the Rescue Inhaler for a few hits because I really could not breathe. I had pushed myself too far and now I was paying for it. I should have known better, but stubbornness had gotten the better of me and I did more than I should.

When I got into the psychologist's office to talk, we both agreed that when I left after our appointment, that she would call Transport Services and have a wheelchair sent up to take me to where our car was.

Today's trip, while I believe was very necessary, has taken a huge toll. I got home and my breathing was still so bad, we had to do a Nebulizer treatment. I am beyond exhausted and in pain I wasn't even able to nap. I tried, but listening to my wheezing and not being able to breathe well kept me from dozing off. I gave up and asked for another Nebulizer treatment. 

There are still many unanswered questions about this new disease and I am pursuing tracking down those answers. In the meantime, today proved I am just not anywhere near being able to do anything close to what I could before, even with my IC. I thought I was limited before this; little did I know.

So until things improve and we can get control over this: Uncle; I give in. Call for the wheelchair!

Sunday, January 5, 2014


As everyone with IC knows, learning to live with it and the other associated conditions that most of us have that come along with it is no fun and it's hard. Finding the right treatments, getting educated, finding a knowledgeable doctor, working the diet - it's hard. But we press on, doing all we can to manage our health to the best of our abilities in concert with our medical team(s) and all the knowledge we work hard to gain on our own. All this, for me, was enough to put me out on Disability and limit and change my life forever as I am sure many can relate to. I thought that was hard. 

Then two months ago, much to my shock and dismay, things got worse as those who follow my Blog know. I was hit with what has turned out to be, as far as we can determine, Obstructive Lung Disease/Adult Onset Asthma. I got hit so suddenly and so hard by this, the Pulmonologist was literally scratching his head a few times at how bad off I was and how poorly I've been responding to the treatment plan. This has literally been a game changer and taken a toll that I would not have thought possible! 

Things actually began to go backwards in the past week or so and I was deteriorating back to the level that sent me to the hospital to begin with. I was supposed to see the Pulmonologist on this past Thursday and desperately needed to do so. Then we got hit with a huge blizzard and the doctor's office closed and I was unable to see him. I was on the phone with the office staff, in tears, telling them how desperate I was to see him and how bad things had gotten. They didn't hesitate. They said they would have the doctor call me and within less than an hour, he did. We talked and he made some changes to the treatment plan to try until I can see him in a few weeks. In addition, at the suggestion of both him and my Primary Care, I have an appointment scheduled for this week to see an Allergist. So we are doing what we can to try to find some answers and make some improvements to my condition. 

This is really hard. It has taken a toll on me in so many ways. I will admit to more than a few meltdowns since this all began. Luckily for me, I have an appointment with my psychologist in a few days and that's a good thing. I just hope I can talk and that my shortness of breath doesn't make it an exercise in futility. The more I talk, the worse the shortness of breath gets and that sets off the coughing spasms and everything goes rapidly downhill from there. 

This has been hard. But I am really trying to cope. I'm not doing as well as I would like. But I am trying. I want to think positively and know that we will find answers. But with this on top of my IC and everything else is really making it a bigger challenge than I've ever faced. I would not have thought that possible. With all I have been through with my IC, having to sell my home and move in with my parents, go on Disability and lose my independence - that was all extremely hard. I have been in therapy for 6 years learning to cope with how to live with chronic disease. Now I have to learn how to deal with even more. 

It's hard. But I am trying. It's up and down and harder than anything I've had to deal with. But I am trying. I am so blessed with a wonderful family that loves and supports me and they have rallied around me through all this. I do not take it for granted and I could not do any of this without each an every one of them. 

So on this Sunday that I usually devote to an Inspirational Quote for the day, as a way to help me, as well as my readers, try to seek a positive place, I will still include an Inspirational Quote that I found that speaks to me. This is definitely hard, but I AM TRYING. I will keep trying.

“Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.” 

"Angel" - Sarah McLachlan

Wednesday, January 1, 2014


Well, 2013 didn't exactly go as planned. But I guess they rarely do. In 2012 I had what I thought was a super difficult and challenging year because of my IC. It took its toll and as 2012 came to a close I wished for a better New Year in 2013! It couldn't get worse, I thought, so there was nowhere to go but up. Boy was I wrong.

2013 has been even more challenging for me health-wise. I really didn't think that was possible. But after an 8 day stay in the hospital, 7 weeks of struggling with this lung disease and no improvement in sight right now, it's hard to get enthusiastic about the New Year.

But I am going to give it my best effort to believe that 2014 will bring better things. I am going to make every effort to think positive that we will figure this out and get me back on track. I am going to be proactive and insist on better answers, treatments and help. I am going to try not to let this get me down. 

The New Year is always looked upon as an opportunity for a "fresh start". So, here's to a Happy New Year for us all! I wish everyone better health in this New Year! 

"Auld Lang Syne" - Mairi Campbell