Monday, December 30, 2013


It's been 7 weeks since this all started. 7 weeks of not being able to breathe. 7 weeks of coughing so hard that I have torn several intercostals along with other unpleasantries I won't print. 7 weeks of laying in bed at night and listening to myself wheeze when I try to breathe. You know, late at night, when it's all quiet and I lay in bed - actually propped up by about 7 pillows to maximize breathing and minimize coughing and to ease the pain from the coughing injuries - I hear this sound that at first I thought to myself: "what is that funny noise?" Turns out it's me. It's that wheezing/whistling/gurgling sound I'm making as I try to breathe. 7 weeks.

The time is ticking by so slowly, agonizingly so, because I should be getting better by now. Some progress should be seen at this point. But there is insignificant improvement, if any, so I am all too aware of the passage of time and how long I have been suffering with this new disease.

The longer this goes on, the worse my IC gets too. As if coughing this hard for 7 weeks wasn't painful enough, my bladder doesn't think much of it either. I am using the Rescue Inhaler more than I should every day and we still need to use the Nebulizer every day too. Both should be getting used less and less as each days passes. 

I have another appointment this week with the Pulmonologist so we will see what he has to say. There are some other options that I may explore as well. I want to see what the Pulmonologist says on Thursday first. 

7 weeks and counting. By the time I see the doctor on Thursday, it will have been a full month since they admitted me to the hospital and just over 3 weeks since I've been home. I should be seeing more improvement by now. I'm frustrated, I admit. 

7 weeks and counting. Tick, Tick, Tick - or, rather - Wheeze, Wheeze, Cough, Cough!

Tuesday, December 24, 2013


: causing harm in a way that is gradual or not easily noticed
: of a disease :  developing so gradually as to be well established before becoming apparent
  1. Most people with this insidious disease have no idea that they are infected.
So I’ve been thinking about how to write about what has happened to me over the course of the last 6+ weeks and all that comes to mind is the word “insidious”. Every time I met with a new doctor and answered all the questions they were asking about my symptoms - when they began, what did I notice first, did I have this or did I have that? All I can come up with is this was the most insidious attack because I had no warning. There were no early warning signs; no hints I was coming down with anything; no clues given to me to let me think something needed attention. I had no idea I was sick until I was so sick I needed to be admitted to the hospital. At least that’s how it seems to me.

I’m not exactly an unobservant patient. I think, especially since I’ve had to learn to live with IC, that I’m very aware of my body and what is going on with it. I think this is true of most chronically ill people. We have to learn to listen to our bodies and be on the lookout for flare ups or problems with our condition that need attention. 

But then there are things that are so small, that start out so subtle that we think it’s no big deal. So for me, when this long journey began, one day I was - for me - fine. My IC issues were ever present of course. But, I didn’t notice anything new starting to attack my body. Certainly, nothing that seemed significant. I didn’t feel “sick”. I didn’t have a cold; no sinus issues, no temperature, no reason to stop and truly take notice.

Insidious. When it’s staring the doctors in the face (the symptoms that is) and they can hear me wheezing, see me coughing so hard, long and intensely that I double over in agony because I've torn several intercostals, cannot breathe and require oxygen they know something is seriously wrong. Yet every single test kept coming back negative. That’s insidious. It’s there, they know I am sick and seriously so. But it’s not giving them a clear picture of what it is that’s attacking my body. 

It took time, but we finally got an answer to what the insidious disease that I am battling is: Obstructive Lung Disease/Adult Onset Asthma. We have no idea what triggered it and maybe we never will. That's OK; I'm just glad to have answers.

I don't know about you, but of course I've heard of Asthma. I know people with Asthma. They all seem to manage their condition well. I assumed once we knew what it was, I would start treatment and would begin to feel better right away. That one puff on my inhaler would bring instant relief. That's what the commercials would have you believe. It's easy to treat. It's not that serious. It's "only" Asthma. I should know better. How often do we, as IC patients, talk about people not understanding what we're dealing with. How often do we complain that people do not take us seriously? That if they don't have it, they don't get it. I will confess to being more ignorant about this than I care to admit.

But here's the thing: Asthma is a lifelong disease that causes wheezing, breathlessness, chest tightness, and coughing. It can limit a person’s quality of life. It has changed my life dramatically - and forever.

The doctor didn't come into my hospital room and nonchalantly just say "you have Asthma; here's your inhaler; you can go home." He sat down for a very serious conversation and said "you have Obstructive Lung Disease". He explained that means it could be one of several different types and what those are: among them COPD, Emphysema and Asthma. He told me that even though the Chest CT Scan diagnosis was COPD, I have no risk factors to explain getting that, so he believed I have Adult Onset Asthma. We had a long conversation about how to treat this very serious attack and then how to move forward once it was under control.

But first we have to get it under control. We're still working on that. And I am making improvements. Inches at a time. Inches. Last Monday I saw the Pulmonologist again, one week after being discharged from the hospital. He is fantastic. They repeated the Pulmonary Function Test in his office and it proves Obstructive Lung Disease. He said my situation is like a huge forest fire and they are having more trouble than usual putting the fire out so that they can get me to a "maintenance" place. It will probably take longer than I would like. My doctor said I had gotten so bad that it will take that much longer to get it under control. The big mystery is WHY; Adult Onset Asthma usually has some trigger and we cannot figure out a trigger. So again - insidious. It's just very strange and he admits the WHY is something we may never know. But now we know WHAT and can treat it. He takes this very seriously. I have a bunch of meds to take and a plan in place for now, but this is another disease that I will have to manage for the rest of my life. Right now, getting the "fire" put out and just being able to treat it with maintenance meds is our goal. I see him again next week.

I have a long road ahead of me.  The coughing has improved a lot but it’s not gone yet and when I do cough, I just re-injure the torn intercostals and that is agony. Even after we get this under control (please let’s get this under control), I will have a lot of work to do toward regaining my strength and learning to live with yet another chronic, incurable disease and more medications. This will require a coordinated effort between my Primary Care, my new Pulmonologist, my Cardiologist (all the treatments for this have exacerbated my heart issue), my Neurologist and my IC doctor. Everyone needs to be on the same page!

I will have lots to talk about in therapy and am looking forward to seeing my psychologist in the new year to begin working on how to deal with all of this. I am not embarrassed to admit this has been a rough go.

We take so much for granted like breathing. Not being able to breathe for 6 weeks is a long time; it's scary and it's painful. 

I began this with one word: Insidious. This was a sneak attack that I was not prepared for. It set us back further than we would have liked and on the defensive trying to come from behind to try to get things under control. We are inching our way toward a better place. I was so unprepared. 

This is a story without an ending. It is really the beginning of another new reality for me. There is so much ahead of me, but I am blessed with a loving and supportive family who is going above and beyond to help and support me. I do not take it for granted. I am blessed and love them all so much. 

I want to thank everyone for the messages of support and encouragement sent to me. Thank you all for letting me know you are thinking of me and that you care. Thank You all!

Wednesday, December 18, 2013


I know many of you who follow my Blog know that I was in the hospital earlier this month for 8 days. I am home recuperating but nowhere near where I (or the doctor) would have hoped I would be at this point.

I wish I could take the time to tell you all my story, what I've been through, what I am still going through, my treatment plan and how I feel about this new addition to my IC challenges. But every time I pick up my laptop to write about this experience, I just end up closing it and putting it away. I am not ready to write about it and I also simply do not have the strength to write through the pain, or even stay awake.

I want to share this story with my loyal followers but it will have to wait until I am feeling better than I am at this point. I know you will all understand. 

This is what my days consist of since coming home from the hospital. 

All The Meds!

Monday, December 16, 2013


I have the most wonderful family in the world! That's just all there is to it. During these past 5 weeks while I have battled this new medical challenge, they have come together to offer help, look after my Dad, run errands, bring us meals and so much more! It just makes my heart so full and I do not take it for granted.

This being the Christmas season, and me still quite sick, my ability to get in the spirit of things, participate or even do anything is, well, non-existent. But that hasn't stopped my family. They are bringing the Holiday Cheer to me.

As I posted previously, last week when I got home from 8 days in the hospital, they had purchased a tree, set up and put the lights on. But it's been waiting to be decorated. Last night was to be the night. My brother, sister-in-law and niece were coming over for dinner and after that they would decorate the tree.

Well, I was having a very rough time of it right at dinner, so I never did get any dinner and my pain was through the roof and I was in tears. But my Mom and brother came upstairs, gently, lovingly, encouraged me to come downstairs. They had a place all set up for me in a comfy chair, with a foot rest, a nice warm throw and even put the Santa Hat on me to keep me warm, yet festive! Slowly, very slowly, they got me downstairs, helped me get as comfortable as possible in the chair and turned on Christmas music and they all started decorating our tree! 

Just to be able to be there, be part of it, be included lifted my spirits. This is what we, in our family, like to call "A.I.O." (Adapt, Improvise & Overcome!) and that's exactly what we did. I know so often we all talk about how things like this "ruin" our ability to enjoy special events and so forth. I truly didn't think I could be part of this and yet, my family put their heads together, took into account what I needed but that just being there to watch them all decorate the tree would be good for my spirits. They were right! They were all laughing, we played our favorite carols, they brought the box of ornaments over to me and asked me which ones I wanted included. It was SO special. We have definitely gone minimal this year because of how sick I am, but that's not the point. We aren't letting it get in the way; we're just finding work arounds. And I'm not even having to think of how to do them; my family is being pro-active in finding ways to make sure I enjoy Christmas as much as possible. 

I love my Family! Thank you for your love, support & encouragement!

Me Watching the Tree Decorating!

Wednesday, December 11, 2013


I just wanted to give a quick report for those that may not have seen my posts on Facebook that I am home from the Hospital after 8 very long days.

Yesterday ended up going downhill fast, but it was my first day home from the hospital. Got the Nebulizer and started treatments at home with all the other meds. I am in so much pain from so many pulled muscles from all the coughing I don't have words to describe it.
That said, I MAY have found a trick to help with the side effects of the Nebulizer; it makes my heart race terribly and I already have a heart issue so I've started taking both my heart meds and anti-seizure meds about half hour before the Nebulizer and, while I still get a racing heart, it's not AS bad as it was when I didn't do that. I talked to my Neuro yesterday and he also gave me permission to take an extra anti-seizure pill during these treatments to help relax me. I am hopeful this will mitigate the side effects of the Nebulizer treatments. I had an awful evening but then ended up actually sleeping better last night than since this whole thing began. MAYBE a turning point?? One night does not a trend make so we shall see. But it was certainly desperately needed. I may have overdone it yesterday too by being online too long etc. My body is nowhere near "better" yet and I am so exhausted I didn't think it could get worse. This is a real challenge and I confess to several mini meltdowns. But thanks to my loving family and Mom, I will keep forging ahead.

I will try to keep everyone posted and up to date as I go through my recovery and this new medical challenge that has been added to my IC. Most of us have multiple conditions with which we have to deal - I already had more than IC. But this is really taking a toll I did not think possible. It is a marathon as I said the other day. I will have to work on patience. I've used my meditation and that helps. Think I've devised a few tricks to help minimize side effects of the Nebulizer treatments and called my psychologist and asked her to call me. I will do all I can to cope and move forward.

Thank you so much for your kind concern and words of encouragement from everyone! It means a lot!

All the Beautiful Flowers Sent to Me!

Saturday, December 7, 2013


Well, arrived here on Monday, December 2nd and here it is Saturday, December 7th. Who would have thought. Certainly not me when we left the house on Monday, that's for sure! But this is definitely a more serious lung condition than I ever could have guessed and the doctors are taking it very seriously.  In fact, I just got back to my room from having to have a Chest CT scan with contrast.  The Pulmonary Function test showed I have some sort of Obstructive Lung Disease - but what kind? They were thinking asthma but still want more information. I will hope to hear about the CT today from the doctors if they saw anything that sheds more light on this issue.

As many IC patients know, die contrast is not a friend to our bladders. The minute they injected it, my bladder felt it! I will have to go self-cath as soon as I finish this post. My medical team here at the hospital is working SO hard to get me what I need for an instillation but it's proving - for reasons not one person can understand - difficult to get the meds. My Urogynecologist has spoken with my Hospitalist and put through the order but the hospital pharmacy won't fill it. I have some ticked off doctors here, let me tell you! In the meantime, the Hospitalist promised me some Lidocaine gel so I can use that topically on my urethra. It helps me with the urethra pain so it would be SOMETHING to help and I'll take whatever I can get.

So at least one more night in the hospital. I'm not optimistic about discharge tomorrow; thinking it might be more like Monday but we shall see. What will be will be. Just wanting answers so we can put together a treatment plan. After so many years as an IC patient and a Patient Advocate, I can tell you I am asking questions, checking everything before I let them give me anything but no one minds and every single staff person (doctors, nurses, nursing assistants, etc.) are all wonderful and helpful and doing all they can to accommodate me and work with me. I am truly grateful to be in such an excellent hospital.

Friday, December 6, 2013


I wanted to let everyone know that, as I have been in the hospital all week, the love, encouragement and support that I have received from my family, friends, IC Support Group family and my IC online Community has been amazing! I feel the hugs coming to me across the internet and it warms my heart and keeps me strong.

The never ending messages of support and encouragement have simply brought me to tears. To have so many sending me their prayers and messages of support means the world to me and I thank each and every single one of you for your support.

Special mention to my Local Support Group ladies. One gal pal from my Local Support Group stopped by last night to visit and it truly lifted my spirits (thank you Susan)! She is a joy and a dear friend and it meant the world to me that she came by! Today, another gal from Group came by with some beautiful flowers and spent some quality time making me laugh, and then of course cough (thank you Jenn). But again, it did my spirits a world of good and I am grateful. My Support Group Leader has been in constant contact via email and never forgets to follow up and ask how I am doing. I have several other Support Group friends who do the same. Contacting me online daily to see how I am. I have a fantastic group of friends that I have made from having this awful disease. And each of them has put aside their own pain to ask after me and offer support and help!

I am truly grateful for all these words of support and you have all done wonders for my spirits and are helping to support me through this! THANK YOU!

Beautiful Seasonal Flowers from my gal pal from Support Group! Thank you Jenn!

Thursday, December 5, 2013


As many of you know, I have been in the Hospital since Monday suffering from a SEVERE and non-productive cough for nearly 4 weeks now. It has been brutal and I am in a lot of pain from coughing so much (I know have pulled a few muscles). My bladder doesn't approve either! I have had every test in the book and they have ruled out everything viral/bacterial/pneumonia - like and removed the isolation restrictions yesterday so we knew it was nothing contagious. But what the heck is this?

Well the word is back. Obstructive Lung Disease - severe asthma. I need to stay in the hospital 24-48 hours more while they try IV steroids (oh joy) to see if I get any better. If I do, then they'll send me home with self care meds etc. If I'm not better, the doctor said he'd do a chest ct scan. One step at a time though. I also had a Swallow Test and definitely have a problem there and the Pulmonologist has no idea if that and the lung disease have anything to do with each other or not. But that is also something we need to see if we can fix.

I really like this Pulmonologist; everyone here at the hospital says he's brilliant and works on complex cases and solves them all the time. So to have him smile at me and tell me that he is very puzzled by me made me laugh. I told him - literally, you are not the first doctor to tell me that! Here's hoping the treatments start working! But I'll be here at minimum one more day, likely 2 as the doctor wants to see more improvement in my cough and breathing.

And I am here to say that not all hospitals are created equal. I am blessed to be at one the Top 100 Hospitals in the Country and the care is amazing! My nurses have all been so helpful and kind. Going out of their way to help me with my IC problems while here. As you all know, being hooked up to an IV with IC is no fun! The nurse got them to agree to disconnect the IV yesterday, called my Urogynecologist's office who sent his P.A. over to my hospital room to give me an instillation. This has been a real life saver for me and helped cut down on the increase in IC symptoms I was experiencing. I am so grateful for everyone's care and concern and the extra lengths they have all gone to in helping me with my IC special needs! I know so often we talk about bad experiences, but I believe when something so good happens it deserves recognition. I cannot say how much this has eased what has been a very challenging and painful time for me.
 — at Advocate Lutheran General Hospital.

Beautiful Flowers sent to me by my Big Brother and his wife and family! So lovely and really brightened my day!

Tuesday, December 3, 2013


Well, this is a first. I can't even count the number of times since being diagnosed with IC that I have had to spend the night in the hospital. It's a lot. Usually due to one of my InterStim surgeries. Most patients go home the same day from InterStim surgery, but I am not most patients and nothing with me happens as it "usually" would with other patients. So, everytime I have anything done I spend the night in the hospital due to severe side effects from sedation etc.

Well, this time I'm in the hospital and it's not even my IC. This is very strange indeed! As many of my followers know, I've been battling what we believed to be some sort of upper respiratory infection or bronchitis. But after 3 weeks and all the appropriate treatments, I am no better. I fact, I have gotten progressively worse. Coughing so hard I've pulled a muscle - or two - and hurt so bad I feel like someone has been using my chest and abdoment as a punching bag for 3 weeks. It HURTS! And I'm sure you can appreciate how much my bladder is enjoying all this as well - NOT!

We called my Primary Care Doctor yesterday early and when he heard how bad I was, his instructions were to go straight to the emergency room and get admitted to the hospital that way. So my Sainted Mother gathers me and off we go to my favorite hospital. We got to the E.R. around 11AM on Monday and, as I was doubled over coughing so hard I could not breathe, they took me to a room immediately. At least I was spare the dreaded E.R. "Wating Room". I was given an EKG right away and made comfortable while I waited for a doctor. Well, that did take about 3 hours before I finally saw the first doctor, who made sure I was sent back into the "official" E.R. I was in some holding area it seems. 

Anyway, I have seen something like 6 doctors, had nasal swabs (if you've never had one, they are NOT fun. I thought they were going to hit brain tissue they went so far up my nose!) Another chest X-Ray was ordered. I was given several breathing treatments and oxygen which helped. But all the doctors and everyone here at the hospital have been amazing. They have taken this very seriously, want to figure out what is going on and never treated me like - "oh she just has a cough" at all! 

I have had A LOT of medical history to explain and have patiently gone over the complex medical issues that make up my medical history quite a few times. Every doctor and nurse I have spoken with may never have heard of IC, but they all took it seriously, allowed me to explain and not once was it brushed off as unimportant.

When I finally got admitted to a room (around 5PM by now!), I explained I would need some catheters because here's the thing. You get hooked up to an I.V. and you need to pee!!! And of course, I never fully empty my bladder because of my retention. Well it took quite a long time to track down some 10French catheters but they did it. The nurses on the floor never gave up, listened to me when I told them how much pain I was in since I wasn't emptying completely. They even did an ultrasound to see how much post voiding residual was in my bladder and I think thet were surprised by how much it was. I got the catheters and lubricant, gloves and was allowed to self-catheterize myself and take care of my situation. Insant relief. I as able to sleep for a few hours and that was great. Just did it again. I cannot say how helpful the nurses have been in working with me to accommodate my special IC needs! And that's not even why I'm in the hospital!

They are running test after test trying to figure out what's wrong with me; the vampires have visited regularly! Waiting on results of nasal swabs. And that's good. I am actually glad I agreed to come to the hospital. Whatever is wrong with me needs to be figured out and while being in the hospital is never any fun, sometimes it's a necessary thing to do.

It's just so strange for me to be in this hospital - that I have been in so very many times - and it has nothing to do with my IC! Let's just hope we get some answers soon!

Saturday, November 30, 2013


If you've been reading anything I write lately, you probably know I've been fighting a super nasty case of bronchitis (we assume). I am still not well and coughing constantly and actually feel worse this weekend that at anytime over the nearly 3 weeks since I started coughing.

I don't have pneumonia - the chest X-Ray was negative - and I have finished all the meds my doctor gave me so one would think I would be improving by now. But it is not to be. Nearly ruined my Thanksgiving but I was able to enjoy some nice family time.

I am sapped of every single ounce of whatever energy I might have had even before getting sick. I am a blob on my comfy chair with my blanket and heating pad. My sainted mother has been doing all she can to help me. I guess this will just have to run its course. Might call the doctor on Monday if I'm still this bad. We'll see. He told me last time we spoke that we had exhausted all the treatment options for this and what might be left to try, I can't take. 

So here I am. Too tired to turn my brain on and write a serious Blog. I'm "writing in" sick today. Guess that's where I've been for the past two days already.

I hope everyone else is doing better than I am and taking it easy this Thanksgiving weekend as we kick off the holiday season.

Thanks for all the nice messages and well wishes so many of you have been sending me. They mean so much to me.

Nothing's Changed!!

Thursday, November 28, 2013


On this last Thursday in November we all sit down with family, friends and loved ones to mark Thanksgiving Day. It is a day of celebration, traditions, family, but mostly a day to remember that for which we are grateful.

When you live with a chronic, incurable, painful and difficult to treat disease it’s often challenging to dig through the pile to find the gratitude. But if we stop, take a moment and give it some serious thought I know there are things we all have that we can and should be thankful for today.

So if you are celebrating, in whatever way you and your family celebrates, stop and take a deep breath, close your eyes and think about what you are most thankful for. Even through all the hard times, what is it you are thankful you have in your life?

This is what I am Thankful for on this Thanksgiving Day!

My IC “Family” - Each of you who I have met along this journey has had a positive impact on me and learning to live with my IC. You are all a source of encouragement, willingness to share and help others and have kind and generous spirits even through all your own struggles. So often thinking of others before yourself, you all go out of your way to support me and my Awareness efforts as well as those of so many other IC patients. From all the lovely and kind messages you all send me, to nominating me for a WEGO Health Activist Award, to following my Blog and all I do on Social Media - you all lift me and my spirits every day as well as those of your fellow IC "family"!

The ICA - Well, where would any of us be without the hard working, dedicated staff that makes up the ICA. The information they provide to us via the ICA website, Facebook page, Twitter, Pinterest - you name it - is so valuable I cannot put a price on it. I talk to people all the time who tell me they were lost until they found the ICA and all the excellent information they provide. They talk to thousands of IC patients on the phone every single day; lobby Congress for increased research funding and work tirelessly to help Raise #ICAwareness for us. Thank you ICA!

My Support Group - Well, simply stated, this group of men and women are a never ending source of Support and encouragement and a demonstration that together we CAN get through this! I will forever be grateful for my wonderful Support Group Leader who decided one day she wanted to start a group and put that flyer up in my doctor’s office. It has changed my life for the better forever!

The Love of Dear Friends - You all know who you are. The friends that have stuck by me through thick and thin. The friends who go out of their way to stay in touch with me, call me, visit me and have adjusted THEIR lives to accommodate my special needs mean more to me than words can possibly say. The list is shorter than it used to be; that’s OK. For me it’s about QUALITY, not quantity. And the friends I have are so dear and supportive and never have given up on me. My love and gratitude for each of them means so much!

And last but NOT least - MY FAMILY - I am blessed and thankful for the most wonderful, loving and supportive family. I could not get through this without each and every single one of them! They are a constant source of support, encouragement, patience and love!  And of course, to say I am thankful for my “sainted mother” is an understatement of epic proportions! Without all my Mom does for me, I have no idea where I would be! She is the captain of my ship, guiding me and helping me navigate each and every health challenge that comes my way! I love you all!

These are the things for which I am most Thankful on this very special day of the year - Thanksgiving Day!

I hope you’ll all take a few moments to reflect on what in your life you are thankful for. It’s there if you just look for it. 

"Thanksgiving Song" - Mary Chapin Carpenter

Wednesday, November 27, 2013


Many of you may be aware that an Extremely Generous Anonymous Donor recently presented the ICA with a $50,000 Matching Challenge Grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization was matched by this donor. Research projects funded with this grant will further enhance our quest for answers and focus on identifying the causes of IC and exploring broadly applicable treatments.

Well, the response was so overwhelming, and thanks to everyone's generous support, not only did we hit that $50,000 mark, the donor has generously RAISED the matching grant amount up to $75,000!!
This is such awesome and exciting news!

So often we all talk about how much we desperately need research funding and now, look what has been accomplished! First our Anonymous Donor offers the ICA the $50,000 to create the Matching Challenge Grant. Then this creates such a huge response among the IC Community that the goal is reached and now the challenge has been Raised!

You can read more about the Matching Challenge Grant on the ICA website and I'll post some links here.

So, as we approach the season of Giving, consider asking friends and family to help reach the New $75,000 goal by making a donation in your name to the Matching Grant Fund! This is what I do for my Birthday and Christmas every year. I ask friends and family to NOT buy me any presents but instead make a donation to the ICA! With this wonderful opportunity to raise so much money for IC research, the incentive is even greater to do so!

Let's do all we can to help meet the challenge and hit this amazing New Goal and double the money going to IC research! Every penny counts and no donation is too small! 

Monday, November 25, 2013


What is it about being diagnosed with a chronic disease that makes us all think we have to be stoic, not let anyone know that we're in pain and suffering and that we are still a "superwoman"? What is it that seems to make us think we can't tell our loved ones if we're having a bad day? This does seem to be something that manifests more in women than men, but if the shoe fits then this is for all who feel this way. I talk to so many patients who are always telling me how guilty they feel that they can't do what they used to; that they feel they are not a good mother or daughter or wife - you name it - but I find a lot the women I talk to have these feelings and look upon becoming sick with IC as some sort of personal failing.

Nothing could be further from the truth! If your spouse, parent, sibling or other loved one had been the one diagnosed with a chronic, painful, incurable disease would you think less of them? Probably not. I think most of us would want to help support that person, ask what we could do to help, let them know we are there for them. Offer to do whatever we could.

But for some reason, so many of us seem to take our diagnosis, and how it impacts out lives and changes what we can or cannot do and look upon ourselves as flawed and somehow weak and beat ourselves up because we didn't get the house cleaned to the perfection we used to, or we can't host Thanksgiving like we once did.

It's a process, but I think it's important to say that getting sick isn't a personality flaw! You are NOT weak because you can't do what you once could. It's OK to experience feelings of loss over the changes we have to make to accommodate our illness. But working through those feelings is important and leaning on our loved ones is something we should walk toward not away from.

I realize not everyone has the perfect, supportive friends and even family. But seek the people who DO support you. Ask for their help if you need it. Think about why you think being sick makes you "less than" you were before. 

I guarantee you, no one ever lay on their death bed wishing they had spent more time cleaning their house. But they do wish they had spent more time with those they love. Even if you can't run around the yard with your children anymore, spending time with them is what they will remember. Just being with you; doing quiet activities is important. They will remember you were there for them when they are adults. And, in the process, I believe you will have taught your children to be caring, empathetic adults who will be there for those they love because you taught them how to do this as they grew up.

Hiding how much pain you are in from family and friends isn't a sign of strength and serves no purpose. You don't have to make a huge deal out of not feeling good. But let's say you are at a party or family gathering (those will be popping up starting this week). If you are asked how you are feeling, simply state you are not feeling well but you prefer not to dwell on it. Ask if that person is willing to go sit with you in a comfortable place and visit with you and distract you from your discomfort; tell them this will lift your spirits. How many people would actually say No to a request like that? Then re-direct the conversation to them, their family, what they've been up to. If they want to ask more about your IC, tell them what they want to know but keep it simple and don't monopolize the conversation with it. I always give myself a cut off point before I pivot the conversation back to the other person.

I find this works well for helping to lift my spirits, as I mentioned. I love hearing about my friends, what they are doing, their work, family etc. The ones who have stuck by me are the ones that truly understand my situation and always ask about me. I tell them, but don't dwell and move the conversation along after bringing them up to date.

It's not weak to admit you are in pain. In fact I think it takes a lot of bravery to show others that we do need help, love and support to get us through our struggles. No one should ever feel guilty for getting sick. So as we approach this Thanksgiving and the upcoming holiday season, I want to encourage everyone to change their expectations of themselves. Don't feel you have to do what you've always done. If you need to change the plan, whatever that may be, to accommodate your physical needs, then do it. Ask for the support you need. Let family know you want to BE with them; that's what we want most. Just time with those we love. It's not about being Martha Stewart. It's about spending time with loved ones and not being afraid to ask for help when we need it.

You are not weak if you admit you are in pain. You are you. You are still the person your family loved before and that hasn't changed! I think living with chronic pain is brave and every single one of us needs to give ourselves more credit than we do! We are stronger than we know and asking for help doesn't make us weak!

Sunday, November 24, 2013


I know Sunday is always my day for an Inspirational Quote, but I really could use one myself today. If you follow me, then you know that I have been fighting a super nasty case of bronchitis for two weeks now. It just makes everything so much worse and my bladder does not appreciate all the coughing and wheezing, that's for sure. It's been an added struggle on top of all my usual challenges that I really could have done without. 

So, I'm taking my own advice and putting up my usual Sunday Inspirational Quote and will work to take it to heart. 

"Roar" - Katy Perry

Friday, November 22, 2013


Many of us struggle for so long with our IC, working so hard to keep working. But for some of us, it just becomes too hard and we are faced with the very difficult decision to file for Disability. I am on Disability due to my IC and associated conditions and here's what I know about going through the process.

If you are looking for support because you want to remain working but need a letter from your doctor to help you request a "Reasonable Accommodation" at work, that falls under the Americans with Disabilities Act and the burden of proof is NOT the same as with proving Disability for SSDI. See this link from the ICA website on Talking with Your Employer About IC. As you will read on this page: Typical accommodations specific to interstitial cystitis are detailed on the JAN site. You may want to print the page about accommodations for bladder impairments and share this resource with your employer.

I began my process by going on Short Term Disability through my employer.  Then when I wasn’t able to return to work, my company also offered Long Term Disability which I applied for as well. It was a challenging process and they also force you to apply for Social Security Disability because if you get approved for SSDI, the private carrier can reduce what they pay you by what you are getting from SSDI. KNOW what benefits you have at work before you do anything. I have spoken to many patients who just quit their jobs and discovered too late they had these benefits. If you do have these benefits, this is where you want to start.

One thing to know is that SSI (Supplemental Security Income) is NOT the same as SSDI and if you have ANY money, you won’t get SSI. Often when calling a disability attorney’s office they ask how much you make and assume you want SSI; this happened to me 4 times! It is also part of the process of applying for SSDI; Social Security has streamlined the process as many who apply for SSDI also do qualify for SSI so they just made it part of the process. I had to answer all the questions about SSI but knew I would be denied for that part and my consultant told me to about it and not to confuse it with being denied for SSDI. I had money in the bank from the sale of my house so that automatically disqualified me for SSI. But one has nothing to do with the other and you can still proceed to file for SSDI; your financial resources have ZERO impact on whether you will qualify for SSDI or not! 

You DO have to have worked for a long enough period of time to have earned enough of what are called “Work Credits”. If you do not have enough Work Credits, then no, you won’t qualify for SSDI.

First, the Social Security Administration (SSA) has what is called a "Listing of Impairments" which lists a long list of diseases. If the disease is in the Listing of Impairments, then it is very likely a person would be approved for Social Security Disability (SSDI). IC is NOT in the Listing of Impairments. HOWEVER, due to the dedicated work of the ICA, back in 2002, the Social Security Administration issued what is called a "Policy Interpretation Ruling on IC". The 2002 Social Security Policy Interpretation Ruling on IC recognizes IC as a condition that CAN be a basis for a disability finding, and it provides guidelines for the agency’s evaluation of IC claims.

Here is a link to the Policy Interpretation Ruling on IC for you.  Print this out. It is vital to applying to SSDI; not everyone knows about this and it can be very helpful when filing a claim.

Yes, as many will report, it can be very challenging to get approval for Social Security disability, not just for IC patients, but don't let that stop you. It is your job to prove you are disabled. This is very frustrating for so many IC patients, so I understand what everyone is dealing with. I was denied on my first claim and we filed an appeal and I was lucky enough to be approved after one appeal. I had my entire medical file since being diagnosed 12 years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal. If you are just starting out and need to file your initial SSDI claim, know that you can do it online and do NOT have to go to the local Social Security Administrative (SSA) offices and stand in line. It's on the web and you can fill out the paperwork right online.

You DO need to be able to demonstrate to Social Security HOW your illness(es) prevent you from doing ANY work at all. Of course, if you have excellent medical documentation with multiple problems that impact you, then that can help make your case, though it's no guarantee. Your doctor(s) support can bey very important in going through this process. My doctor wrote an amazing letter of support as did my psychologist. These are key, so having a letter or letters of support from your doctor(s) should be something you discuss with your doctors as you prepare for the process. So, ask your doctor(s) about helping you with this. I strongly recommend you purchase the ICA's Personalized Disability Packet, which includes a general letter explaining what IC is and why someone should be considered disabled because of IC.

If your doctor will write a letter that can be very helpful. One of the items in the Personalized Disability Packet includes a sample letter in the workbook and it is very specific as to how it should be worded. In addition, the ICA's Introductory Disability Packet can help you if you are just getting started in the process, so that is another item worth purchasing. If you are an ICA Member you can purchase all items at 50% discount. This is especially important if you need to Appeal a denial or are going to court for a hearing. The Personalized Disability Packet can be very helpful for Appeals!

It is very important for you to include any and all overlapping conditions related to your IC; i.e. anxiety/depression as a result of your medical conditions, sleep disorder, vulvodynia if you have it, fibromyalgia if you have it; your bladder issues etc. You get the point. You need to describe HOW the disabling impact all these conditions has brought you the point of not being able to work. Explain how your urinary urgency, frequency, high level of pain and discomfort for sitting, standing, physical exertion, physical and mental fatigue impact your ability for sustained function and performance for ANY job on a short or long term basis. You need to have medical evidence that the side effects of your medication(s) are significant and not only prevent you from doing the job you had, but also from doing ANY job and why if this is an issue for you.

When making your case you need to ask the question "What employer, with full knowledge of your medical condition(s) would hire you given your physical limitations? With the diagnosis you have of IC and any other complicating medical conditions, what would define a reasonable accommodation by a prospective employer? Explain that sitting, standing, concentration, motor skills are all affected by the extent of your medical condition(s) as well as side effects of your medication, that are supported (or need to be) by your medical records that you provide.

In addition, if you are appealing or waiting for a court hearing that is taking forever, you should contact your U.S. Congressional Representative's office (LOCAL office, NOT DC office) and ask to speak with someone in Constituent Services. Explain that your SSDI case seems to be taking a very long time, how long you've been waiting etc. Often they can help push it along in the process. They can't help you get approval, but they CAN help get it through the system faster.

Also, if you are in dire straits and need financial assistance or help with medical care, you can ask your Congressional Representative what services are available in your community to help you. Do not hesitate to call your Representative; this is what you elected them for and they can often guide you toward assistance programs in your area. Also, 

If you file for SSDI and get denied, then you definitely need an attorney or a non-attorney disability claims representative to help you with your appeal. You do not have to pay them anything until or unless they win your case; they get paid out of whatever settlement you receive from Social Security.

There are no guarantees. It is a challenging process and everyone has a different story of how hard it has been for them. Many are still fighting. While some like me, did have to Appeal once but was then approved. Yet others have been approved on the first go around. It is not a level playing field and you need to go in prepared for a fight. But if you are struggling and feel this is the right decision for you, then I urge you to never give up, go in prepared and educated and backed up with as much documentation and medical support you can muster!

Wednesday, November 20, 2013


Yesterday I received a Tweet informing me that I had been nominated for one of the WEGO Health Activist Awards!

I was so surprised and excited and couldn't wait to find out more! I clicked on the link provided and was directed to the WEGO Health site where I had to set up my Nomination Profile. I did this and, as most of you know already, I started spreading the word asking for support.

It sounds so corny, but it's really true - I am honored that I was nominated. Often here in cyberspace we are not really sure how much of an impact we are having in what we do; my Facebook, Twitter, YouTube, Blogging, Pinterest efforts - I really am never quite sure how many people are seeing them or if I am having an impact. To have someone take the time to nominate me made me feel like I am making a difference and people are paying attention. I was so touched and appreciative.

I know I have reached out to many of you to go to the website to my Nomination Profile and Endorse me. But you can do more to help me. If you scroll down a little bit, you'll see a link that says "Add Your Nomination". If anyone feels that my efforts are deserving, it would mean the world to me if you would not only Endorse me, but also add your own Nomination. It doesn't take long at all (some family members have done it and it takes less than a minute if you know what you want to say). 

Here is the link to my WEGO Health Activist Awards Nomination Profile where you can add your own Nomination and Endorse me. I hope some who follow me will take a few moments to do this; it truly would mean the world to me.

Whether you take the time to Nominate or Endorse me, I still want to say a big THANK YOU to all who continue to encourage and support my IC Advocacy efforts. Without all of you supporting me, I could not do what I do. 

Tuesday, November 19, 2013


Elizabeth, who was recently an IC Hero and got The Doctors TV show to have her on the show and cover IC, posted some thoughts on her Mommyland FB page from earlier this year about the struggle of living in pain and often the despair and loneliness that comes along with it. This inspired me to write about my feelings on this as well. 

When I was first diagnosed I had no idea where I would end up or how bad things would get. I Blogged about this recently (here's a link if you wish to read the Blog post):

Slowly, as my condition worsened, I found myself struggling as Elizabeth and others talk about. Spending all my time researching, looking for answers, going to doctors, trying treatments. Crying, because as time went on, I couldn't believe this was to be my life. I cried in my IC doctor's office so many times I lost count but he has never lost his patience! Everything or every setback was a catastrophe; there was nothing positive. I was obsessed with keeping my voiding diaries; obsessed with every little symptom and tracking every single thing every single day. Every good day, if there was one, I reacted in an overly positive way. Every setback, and there were many, was the end of the world. The constant emotional ups and downs were taking their toll. I was depressed, as many IC patients find themselves as they begin to fight this battle, and felt like I was stuck in this hole I couldn’t get out of. 

Yet one thing that was always lurking inside me, that I couldn't find on my own, but somehow knew was there, was that I didn't want to feel like this. I wanted out of this hole. I didn't want to be that person that could do nothing but talk about my IC and how crappy I felt. I didn't want to be the person that thought someone telling me I looked good was an insult (do I really want someone telling me I look as crappy as I feel?). But how to change this obsessed, depressed path I was on and get out of this hole? 

Well, the it took several things all coming together at the same time and one stroke of good luck to change things for me. I knew deep inside that I didn’t want to be this way, but didn't know how to dig myself out of the hole I found myself in. Until that fateful day that I was sitting in the exam room at my urogynecologist's office and I saw a new flyer taped to the wall. Someone was starting an IC Support Group. Now, I've never been the type to join things like this. I was always shy and not good at contacting people I didn't know, but this flyer reached a place inside me and struck a chord. I asked the nurse about it. She told me it was another patient of my doctor's; that she had IC and wanted to start a Support Group. She offered me a flyer to take with me and it changed my life forever! This was so out of character for me, but this is what being stuck in the hole will do; if you think someone can show you the way out, you'll reach up and take their hand. I called her and left a message. She called me back very soon and I discovered I was the very first person to call her. She invited me to have lunch and I agreed. We hit it off immediately and I was able to talk comfortably with someone I had never met before about my struggles with IC. She was so kind, warm, caring and we shared this thing in common. Would I help her get the Support Group started? To my surprise, I said yes. Now let's be clear; she did the "heavy lifting" of getting our group off the ground, but I worked with her going out to doctor's offices and asking if we could put our flyers in offices. Slowly she began to get more and more people contacting her and we began having meetings every month. This was one of my light bulb, "ah ha" moments. I discovered I had become a very educated patient who could help others and walked out of every single Support Group meeting feeling better than when I arrived. 

Around the same time, my IC doctor had suggested that I also consider seeing a psychologist to help me learn to cope with how to "live" with having a chronic disease. He gave me a referral. Again, I thought silently: "Who me? I need therapy?" That momentary feeling of, not me, I don't need professional counseling. But again, there I was in that hole and now there was another set of hands reaching down to show me the way out. I walked across the hall and made my first appointment to begin counseling with this wonderful psychologist. She works only with patients suffering from chronic illness/disease/pain, so it was a perfect fit. I felt comfortable immediately and free to talk about anything with her. This was also a light bulb "ah ha" moment. And this has changed my life forever as well.

Through my Support Group Leader I became actively involved with our Support Group, and then the ICA as a Patient Advocate. I learned I had something to offer people and that was so positive. I didn't have to be trapped down in that hole and maybe, just maybe, I could offer help, support and encouragement to others and reach down and help someone else out of the hole, or at least give them directions, so to speak.

Working with my therapist, I realized there were so many positive things I was doing that I wasn't giving myself credit for. That I was much stronger than I thought. That I was proactive and an excellent problem solver. I didn't sit around and wait for things to happen, I was making changes, taking an active part in my own care, and taking some control back. 

There is always a way to learn to cope. We don't have to be stuck in that hole. No, we can't do anything about getting IC. But we CAN do something about how we deal with it. It's not something one fixes overnight, but finding out I suffer from very normal and understandable anxiety and mild depression was eye opening. But that's partly because I refused to stay in that hole. I could have sunk into the depression that some do; it's an easy thing to do when dealing with the pain and illness we do.

But I could visualize another path. And with some very helpful hands, every step I have taken out of that hole has been a step in the right direction. It is positive and it helps me cope. Do I have my moments? Of course I do. 

But a few key things I learned through this process for me were: 

- I got myself off that lab rat wheel, as my doctor calls it. With his encouragement and support, I stopped obsessing over my voiding diaries and other symptoms. I no longer keep track of my voids ALL THE TIME. After 12 years, I know where I am and can tell when things get worse. I also learned I was capable of changing how I respond to living with chronic pain. Every setback isn’t a catastrophe or the end of the world. I learned to stop catastrophizing and learned coping skills to deal with setbacks and challenges. It doesn't take the pain away completely of course, but learning coping techniques can and do make a difference. I work on this. If I have a setback, I talk about it in therapy.

- Learning not to be embarrassed about IC and how to talk about it with others was a big step out of the hole. Being able to explain it to family, friends, coworkers was important to me. Learning how to do this without self-pity was important. Those that truly care about me have supported me and took a sincere interest. Others that weren’t have fallen away. But that’s the other thing I learned. This will happen. Learning to LET IT GO has been an important part of learning how to cope with chronic illness. 

- A big deal for me was when I realized I needed to stop wasting energy on WHY I have IC. We don’t know and probably won’t know in MY lifetime. I don’t care. I can’t change it, so that’s negative energy I don’t want to waste. I choose instead to focus on what I CAN do and do not spend time on what I can’t change. 

- Finding my voice among the IC Facebook community helped me as well. All of you were another hand reaching down into that hole to help me out. It also gave me the chance to try to do the same for others. With the encouragement of family, I began this Blog. This has had a real positive impact on my life with IC. Becoming a real patient advocate; using Social Media to try to raise IC Awareness - these activities changed my life and how I feel about living with IC. I consider myself a true “Activist” and I like that.

- Becoming a dues paying, card carrying, active and involved supporter of the Interstitial Cystitis Association (ICA) is something I feel strongly about. Working on fundraising for the ICA over the last three years I have raised over $3,000 that has gone directly to IC research and none of what I have done is complicated, hard to do or takes a lot of time. Anyone can do what I’ve done. But for me, this has been and continues to be something I am passionate about. This gives me something positive on which to focus my energy. 

- And finally, my Support Group Leader! WOW! How to even express how I feel about her. This is a woman who inspires me every single day and has been so supportive, encouraged me to do what I never thought I could, and has become a friend that I will be so glad I made along this journey. I owe her more than I can say! She is a true IC Advocate and Hero and others may not know it but she has done so much for everyone with IC, we all owe her a debt of gratitude. She certainly has mine and then some!

There IS a way out of the hole; you just need to reach out and grasp the hands of those willing to help you find the way out. They are there if you look. I had to look for those hands, but I found them, some found me and together they have given me a way out of that deep, dark hole. 

So here’s a little tale that I think speaks to my philosophy about learning to cope and live with IC and anything else we all have.

“This guy's walking down the street when he falls in a hole. The walls are so steep he can't get out.  A doctor passes by and the guy shouts up, 'Hey you. Can you help me out?' The doctor writes a prescription, throws it down in the hole and moves on. 

Then a priest comes along and the guy shouts up, 'Father, I'm down in this hole, can you help me out?' The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by, 'Hey, Joe, it's me can you help me out?' And the friend jumps in the hole. Our guy says, 'Are you stupid? Now we're both down here.' The friend says, 'Yeah, but I've been down here before and I know the way out.”