Monday, September 30, 2013


I have been so impressed with all the efforts I have seen by other IC patients to help raise awareness, raise funds for research and just get the word out! It warms my heart to see so many taking an active role in their healthcare and trying to help others by becoming an IC "activist". They may not see themselves that way, but I do! 

From "Mommyland" working so long and hard and finally being invited to appear on The Doctors TV show (amazing!); to others creating T-Shirts to sell for IC Awareness; still others (aside from me) Blogging about IC and how it affects their lives (See below for Blogs I like); still others looking to start Support Groups or those that already do. The list of activities by IC patients seems to grow every day. 

All of these women are IC Warriors and are to be commended for all they do to help others struggling to cope with IC. I am impressed by the number of us that want to DO something, anything, to raise awareness and help with fight against IC.

I am inspired to keep up the fight and continue my Blogging and Tweeting and fundraising to do what I can do to help the cause!

Sometimes it feels like it's a drop in the bucket - just me doing what I do - until I look at what everyone else is doing and suddenly I realize that we are all making a difference. Everything, no matter how big or small, when done to help raise awareness or funds for research is a big deal, I believe.

Keep up the good work everyone. You are all an inspiration!

And, like I've said before - Together We Can Do So Much!

Sunday, September 29, 2013


Here's one I really like and feel I can relate to. Yes, my IC is definitely something that has changed my life forever. But it has also re-directed me in what, I hope, is a meaningful way. Becoming a passionate patient advocate, writing this Blog, fundraising, etc. has given some meaning in my life that I likely would never have found had not gotten IC and I am the better for that redirection.

"Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way."  ~Bernie S. Siegel

"The Power of the Dream" - Celine Dion

Thursday, September 26, 2013


September 9-15, 2013 was National Invisible Illness Awareness Week. I have posted about this a few times and go to their Facebook page and follow it. It's one more resource and place to go to help raise awareness about IC as one of the many invisible diseases that desperately needs awareness!

Today, on the National Invisible Illness Awareness Week Facebook page, was a post from the organization about the New Michael J. Fox TV show that premiers tonight on NBC. Here's a screen shot of the post they put up.

The post included an link to the NBC website with information on the new show. I have to say my reaction was one of true surprise.

Don't get me wrong. I love Michael J. Fox and think what he has done for Parkinson's Awareness is fantastic. If only we had someone with such celebrity who could speak for the IC community! Think what that might do for us. He has been able to testify before Congress to help increase research funding for Parkinson's, has established a foundation and IS the public face of Parkinson's.  I fully intend to watch his new show and think it demonstrates that suffering from a chronic, debilitating illness doesn't mean your life is over. He is inspiring.

But, I am here to confess that this post on the INVISIBLE Illness Awareness Facebook page really bugged me. My gut reaction was - really, Parkinson's is being counted as an Invisible disease? If anything, this awful, disabling disease is among some of the diseases that hardly qualify as "invisible" and certainly not in Michael J. Fox's case. Watch an interview; watch his show - you will SEE very clearly and without a shadow of a doubt that he has Parkinson's.  Yes, early on it develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.

And, while in the beginning, as the description above says, symptoms may be "barely noticeable", they are certainly not, in my mind, invisible. And of course, as the disease progresses, symptoms become more and more noticeable making Parkinson's one of the easiest diseases to SEE.

Those of us suffering from chronic, incurable, painful and truly INVISIBLE diseases would give anything to have this kind of publicity and access to a platform to raise awareness about IC!

I am not trying to minimize the battle of those individuals with Parkinson's. But I truly don't believe it should be classified among the Invisible Diseases category. We struggle enough to get people to pay attention to us; to believe that we are truly sick because they can't SEE what is wrong with us. I feel that it does a disservice to those who fight THAT battle every single day. Patients with IC and other truly invisible diseases that are accused of making it up, accosted in parking lots for using their Handicapped Parking Placard because some idiot decides they think they know better and that they have the right to tell us what we do and do not deserve! I can state with certainty that if a Parkinson's patient got out of a car parked in a Handicapped space, no one would approach them and accuse them of making up their need for that privilege.

Once again, as in a previous post, I feel the need to point out that right now, today, there are 4-12 MILLION people just in the U.S. suffering from IC and we can't get anyone to talk about this in the media! We struggle to raise funding for research and desperately need better treatment options. As for Parkinson's, there are as many as ONE MILLION Americans with Parkinson's, with a total worldwide estimated at 10 million.

The Parkinson's Disease Foundation website states that since it's founding, they have supported $100 MILLION in research for Parkinson's! Check out the link to the Michael J. Fox Foundation's Financials. I think you will be amazed by how much money is being raised by his Foundation, with his celebrity attracting other celebrities and making it so much easier to raise funds!

I have stated this before and want to be very clear about this. I WISH THERE WAS NO DISEASE OF ANY KIND! No one should have to suffer from Parkinson's or Cancer, or IC or any other disabling disease.

It just gets so frustrating when we are all working so hard to raise IC Awareness, struggling to raise funds to support research funding, writing to our Congressional Representatives asking they support increased funding for research and we can't TOUCH the kind of awareness and money that is being raised for Parkinson's by Michael J. Fox and his celebrity friends, or as I wrote about previously, Maria Shriver and her work for Alzheimer's.

I was just left with the feeling: What's It Going To Take for IC to get this kind of awareness and support and fundraising? Who will speak for us and give us the big breakthrough we need to crack the type of funding we need to make a real difference in the lives of those of us suffering with IC.

What's It Going To Take? Until or unless we can get this kind of media attention those of us with IC need to get motivated, make our voices heard and do everything we can to help raise awareness and funds for research! 

Those of us with IC are what someone with Invisible Disease look like!

Tuesday, September 24, 2013


Today I had a much needed appointment with my psychologist. I've been away for longer than usual because my Mom, who drives me to all my appointments, was out of town for about 3 weeks and then scheduling conflicts etc. So I was ready for today's appointment. I had a lot I wanted to talk about.

I think we all struggle with various issues related to our IC and for me, working with a psychologist is something I find extremely helpful. Going nearly two months without an appointment was longer that I like and I felt like I could have talked for  2 HOURS!!!

In any event, I often try to schedule an instillation appointment right before my psych appointment for several reasons. First, both doctor's offices are right across the hall from each other, so it's convenient. Second, for me, getting an instillation before my one hour psych appointment makes it so much easier to sit through the hour comfortably and not have to get up to go to the bathroom. I love it when I can schedule those together. Unfortunately, I wasn't able to make that happen today, so I had to deal with sitting through the appointment, getting up to pee once and interrupt the flow etc. By the time we were done, I was so uncomfortable and my bladder too full that I knew even stopping in the ladies room to pee wouldn't help as much as I wanted since I suffer from extreme retention.

So I had a light bulb moment! I knew I had a catheter in my purse, so I fished it out. I pretty much only self-catheterize at home and use a mirror so I wasn't sure if I could pull this off. But I knew I wanted to try. So I pulled out the catheter and tried to visualize what I see in the mirror and wouldn't you know it, I got it!

I hit the urethra on my first try and my bladder began to empty. Oh what a relief it was!! I was SO proud of myself. I gave it a try, it worked and I got the relief I needed, especially for the hour long drive home. I didn't talk myself out of it; I figured out how to make it work and I did! I just proved to myself that I am more capable than I believed I was. I am so pleased and now will make it a point to always carry a catheter or two with me so if I feel the need when I'm not home, I can try again. I'm not sure I'll always hit the mark but I'm more willing to try in the future. It just goes to show you that we are often more capable of handling things than we think we can. So, my take away that I hope others will also get from this is to give yourself more credit than you might. Know you can do whatever it takes to help yourself and take charge of your own needs.

I love it when things go well! Today was one of those days!

Sunday, September 22, 2013


Today's inspirational song - "Her Diamonds" by Rob Thomas was written for his wife who suffers from a rare auto-immune disease. I think it's a beautiful tribute and inspiration for all of us suffering from chronic illness.

Friday, September 20, 2013


I submitted a video of my story of living with IC & Invisible Illness to the Invisible Diseases Association and they have published it on their YouTube Channel (Invisible No More TV). 

Here is a link to my video. I hope you'll take 3 minutes to watch it, share it with anyone you want to understand what living with IC & Invisible Disease is like.

Thursday, September 19, 2013


September is Interstitial Cystitis Awareness Month and one of our IC friends, Melissa, went the extra mile and designed and printed IC Awareness T-Shirts to sell with a portion of the proceeds going to the ICA for research.

What a great idea and she is to be commended. Anytime I see someone working like this to do whatever they can to raise funds for IC research, I am on board. So I ordered my T-Shirt. Well, in order for the printer to print them she had to get 100 orders. So as days went by we waited to see if the minimum order would be reached.

I am excited to report that at least 100 were ordered and my T-Shirt arrived in the mail today. I am doing my share to help raise awareness by posting a picture of me in my T-Shirt everywhere I can. I have Tweeted it but I have also posted it on other IC websites that I like and visit.
Here is a photo of me wearing Melissa's IC Awareness T-Shirt

If you scroll down to the bottom of my Blog, you'll see a list of other Blogs and sites that I like. I hope you'll check them out too. There are a lot of sites and of course my top pick is always the Interstitial Cystitis Association website & Facebook page:

But there are other sites where you can share and exchange info and go if you want to spread the word and raise awareness. Here are some of those sites and I have posted this picture to all of these.

So if you ordered a T-Shirt, take a picture when you get it and start posting it everywhere you can to help really spread the word and raise #ICAwareness!

There are also other websites that aren't IC related that I like because they speak to me on a basic coping with illness and overcoming obstacles. Here's one I really like.

Wednesday, September 18, 2013


I think we all struggle with the ability to do things we used to do without even thinking about it. Exercise is one of those things. It used to be something that I could do without ever thinking about it. Was I feeling well enough? Would it send my pain through the roof? Those weren't questions I had to ask myself before IC.

I am constantly struggling with my inner voice and my physical body when it comes to exercise. It's like that old routine you'd see with the angel on one shoulder and the devil on the other. My inner voice is the devil; always telling me I have an excuse not to even try to exercise. The devil wins more than he should! The angel on my other shoulder is encouraging me to try; just do the best you can. Go on my "good" days and don't feel like I have to conquer the world. Just get up and move!

Today the angel won! I asked my Mom if she was going to our fitness center to ride the stationary bicycle and she said she was, so that encouraged me to go along. I put on my workout clothes, got my water bottle and iPhone and headphones to listen to my music and off we went. It's not like it's far. We can actually see the building from our kitchen so it's pretty bad when you talk yourself out of going when it's that close! 

The great thing about our little fitness center is that it's quiet, there's a nice bathroom I can use if I have to and I can generally get one of the three treadmills with no problem. Much nicer than a huge gym; at least for me.

I need to listen to the angel on my shoulder more often. I have been battling this for a while now but making improvements steadily. I need to do the same thing with my diet. I have put on weight this year - weight that I worked so hard last year to lose. But can't seem to string together enough days where I stick to my plan for it to do any good.

Each of us has our own struggles. Having a chronic illness and pain is a drag. And finding the motivation to do things that are good for me (for us), but that are real challenges is just that - a real challenge. It's way too easy to not do what I know I should, so I have to work harder at listening to that "angel" on the one shoulder and just do better. I don't have to be perfect; I just have to do BETTER. 

This is something I will continue to work on. I know I need to cut myself some slack but not too much slack. Sometimes we need to push ourselves out of our comfort zone and that's hard for me. If I have a bad day, that's when I find myself sliding off the rails. So I need to take my own advice and put my coping skills into practice on those days and not let myself off the hook to do whatever I want.

Today I did something! I walked on the treadmill for 31 minutes. It's never easy, but I did fine and I am glad that I did it. I'll take it. One day at a time, one step at a time. Now if I can get through today and stick to my diet that will be another plus.

Tuesday, September 17, 2013


We all know that feeling. It hits like a ton of bricks and suddenly you feel like asking yourself "When Did I Get Hit by a Truck?" The pain becomes overwhelming and the exhaustion takes over and you feel every inch of your body hurts that you didn't even think could hurt!

Earlier in the day you were feeling pretty OK. I know I'm never going to win any prizes for feeling great; I just have accepted my new normal and it's most definitely nowhere near my pre-IC feeling good! But I know what a "good" day is vs. a "bad" day. So like many of us, when I'm having a good day I have a tendency to do things that need doing or that I don't usually get to do. Sometimes knowing full well that feeling will hit at some point. Some things are just worth it. Spending time with a friend or with family at a gathering. They take a toll, but because they are so good for my soul, I don't mind and plan ahead to take it easy the next day - or however long it takes - to recover.

Then there are the days where I think we can all relate. We feel pretty good and decide we're going to take on more than we should. This is what happened to me yesterday. My Mom and I want to have a garage sale in a few weeks and we need to get moving on getting organized for that and going through stuff in the basement, the garage and so forth. So that meant many, many trips up and down the stairs to the basement, lots of bending, lifting and hours of going through stuff, throwing things out, separating what is garage sale material and what is trash. We made a great start and I am glad. When I moved in with my parents after getting IC it was a challenge to merge two households. I got rid of a lot of stuff, so did my Mom. We worked together to blend my things with her things so that it felt like it was as much my home as it was theirs and that I wasn't just a "renter" so to speak. We've had quite a few garage sales since I moved in but we still have too much "STUFF" and need to pare down even more. I'm on board with this and want to help. My Mom is 83 years old and had knee replacement surgery in May, so I can't just sit back and say I can't help when half the stuff is mine. So I rolled up my sleeves and pitched in.

By about 3PM, there was that feeling! BAM! I felt like I'd been hit by a truck! I just crashed. I hurt all over my body; every inch. I hurt in places you wouldn't think you could hurt. It's like that joke that even my finger nails hurt. Every inch of my body was screaming at me. I ended up going to bed much earlier than I usually do and while I got up to visit the bathroom several times during the night as always, I slept well (like a rock) and didn't get up until about half an hour ago. I still hurt all over and am exhausted.

This will pass. I will take it slow today and take it easy on myself. I really didn't think I was over-doing it while I was doing it. I thought I was going about it in a way that would minimize the blow back. But it was not to be.

I will have other days like this. I think we all do. Sometimes there are just things that need doing. We work hard to minimize trashing ourselves, but it doesn't always work out so well. I know I am going to do more to help prepare and do what I can when we have our garage sale. I will try harder to approach this in a way that doesn't "hurt me" quite as much as this time around. 

You'd think after all these years, I'd be used to this feeling. But I find it so interesting that often it feels like one minute I'm doing OK and literally, 60 seconds later I have hit the wall, the pain takes over and I end up having that thought go through my head "When Did I Get Hit by a Truck?"

Sunday, September 15, 2013


"The Bug" - Mary Chapin Carpenter
This song sounds upbeat but I love the message
of life's ups and downs that it tells.

Friday, September 13, 2013


It's been quite some time since I first posted this video I created that I thought I'd share it again. Sometimes it helps me to watch these again and re-inspire and motivate me to keep fighting and remember what I Believe!

Thursday, September 12, 2013


Ever feel like you are going along, managing all the struggles of your IC and anything else you might be dealing with as well? Getting through each day, one step at a time. I know I work hard to cope with all my health issues. Heck, I write about it on here frequently. I use various coping techniques to try to deal with all my challenges. I get up, I make an effort, and I put everything I have into not allowing my IC and all the other medical issues get me down. 

Even when I am hit with setbacks, often - I think - I deal with them in stride. I may not be happy about a setback; I may even be rather disappointed and feel a bit down when those things happen. But generally I feel like I'm doing a pretty good job of handling things.

So why is it always the little things that seem to turn me into a puddle of mush? Problems like I wrote about with my instillation medications exploding on me last week and I fall apart. Knocking over my lunch smoothie - which by the way makes a HUGE mess and can stain everything it touches - and I start crying "over spilled milk" as they say. Knocking over the newly filled bird feeder in the garage and making a huge mess not to mention basically putting out engraved invitations for the mice to come on in. We have a mouse problem living out here in the prairie, so when I did this all I could think about when it happened, while my parents are out of town, is I just made a huge mess and we'll probably have mice in the basement the next day.We have traps in the garage & basement to try to manage this, but they still get in.  But instead of mice, one of our cute little Chipmunks got nailed by a trap and died. Cried over that. Silly. If it were a mouse, no problem. But a cute little Chipmunk and I get all sentimental and teary.

Problems with my electronics will really set me over the edge. This is my way of being in touch with the world so if they don't work I am not a happy camper. Yesterday it was my iPhone acting up. It's still not fixed and the house phone wasn't working right either. I wanted to throw them across the room - to my credit, I did not. But after being sent on a wild goose chase by AT&T to the store where I bought my phone, I get there only to find out I have to go to the Apple Store instead. I just walked out in tears. I'm sure they think I'm a crazy woman. I didn't make a scene or anything. I just welled up and walked out. The nearest Apple Store is too far for me to drive, my parents are out of town until Saturday and my cell phone isn't working. Not happy. My wonderful neighbor has come to my rescue and will drive me to the Apple store today. I am blessed to have family and friends that are so helpful, understanding and do so much to help me.

It's been a week of a Whole Pile of Little Things, one on top of the other. Each one all by itself generally not enough to upset me (well, most days), but when it feels like a pile on, it just gets harder to keep it together. 

It bothers me that I let these things get to me. I want to work on this more. I'll talk about this with my therapist at my next appointment. I want to get better at not letting the little things drive me over the edge. So many days I almost feel like two people. I'll be laughing and happy one minute, then something will happen and I burst into tears. It's disconcerting. I think part of the issue is that I use so much emotional energy on coping with my IC and health issues, that when something like all these littler issues happen, I have nothing left in the tank and I don't cope with them like I should.

I'm sure I'm not the only one this happens to; heavens I hope not. But some days I just feel like I have it totally together and then other days clearly more therapy is needed. 

This past week, it was A Whole Pile of Little Things and I let them get to me. Well, as Scarlett O'Hara always said, tomorrow is another day; and I can start over and try again. It's a work in progress that clearly needs more work! 

Tuesday, September 10, 2013


The bravest thing you can do
when you are not brave
is to profess courage and act accordingly.
-Corra Harris

If you read my Blog, you know that I like positive affirmations, inspirational quotes and music. This is one that I really like because I think so often as we fight our everyday battles with IC, we forget how brave what we are doing really is!

Like so many historical events that happen in our lives that cause us to never forget where we were when heard about them, I bet every single IC patient can remember the day - may even the exact date - they received their IC diagnosis. I was diagnosed in November 2002. That much I will never forget. I sure didn't feel brave then and as I learned to accept my IC and figure out how to live with it, I honestly felt like a big wimpy baby. I didn't feel strong one little bit. As most of us do, there were plenty of times when I cried like a baby and fell apart at any setbacks along the way.

But this is a learning process. Learning how to live with chronic illness is a process. Learning to live with constant pain is a real challenge. Winding our way through the maze of medicine sure isn't easy. But we do it. We do it because we must. We must keep going until we find some relief. 

And so for me part of my process was working with a psychologist to help me learn coping skills for what this new life of mine was going to be. It's not easy. 

Since being diagnosed, I have had 12 surgeries, countless treatments, gone through the disability process and just plain kept fighting my way through everything that was thrown at me.

It's been and will continue to be an ongoing process. I don't think we ever get "happy" with our situation but accepting it and learning how to cope are things we can get better at.

As I went through this process it was pointed out to me by more than a few people; my own doctors, my family, my friends that they were so impressed with how well I handled everything. My first reaction: seriously?? I'm handling this well? I thought I was a basket case. Just goes to show you how strong we are. All these people told me they admired my strength and courage in battling everything I have been through. 

Slowly I started to believe them. I had a real mind shift about this over time because I realized they were right. Every single one of us battling our IC - or any other chronic illness - is to me BRAVE! It takes courage to keep going. To make up your mind that you will never give up looking for better treatments, but also that you will just plain not give up at all! 

Finding a way to still enjoy our lives, friends and family. Problem solving our way through difficult social situations. Continuing to work or not. These things all take courage and strength and determination and I say we all have it in spades! Otherwise we'd never get out of bed. I know there are days we have to stay in bed, but it's the days that even when we don't feel like it, we get up, put on our "I'm OK" face and go out into whatever world we live in (big or small) and we just do what we have to do.

So, I suggest writing this quote down - or any others that inspire you - and keep it someplace where you can see it all the time. Use Post -It notes and put them up in places you spend time. Like the bathroom!! When you are in need of feeling strong, say out loud to yourself "I AM strong!" and then act like you are! 

Put one foot in front of the other and keep going. Because this is what takes courage. This is what takes strength and this why all of you are BRAVE!

Monday, September 9, 2013


For those may not be aware, this week is National Invisible Chronic Illness Awareness Week (September 9-15, 2013). As we all know IC falls into the Invisible Illness category, and many of us have more than IC that are also Invisible. So I wanted to bring this to everyone's attention and add it your awareness work that you may already be doing this month.

Here's a link to their website

There are many different activities and things you can do to help raise awareness and if you go to the website you can find out more about them. The other day on my Blog, I did one of the things they recommend which is "30 Things You May Not Know About My Invisible Illness". This is something you can do and just share on Facebook, but you can also submit it to the website and have it posted there (I did; if you go to this page on the site and scroll down, you'll see my picture which you can click on and it will link back to this Blog where I posted on this topic.

So I would like to encourage everyone to check out this site, the opportunities to use it for awareness and think of it as yet one more tool in your box to help spread the word and raise awareness about IC and all invisible illnesses from which we all struggle!

Friday, September 6, 2013


How many of you watch The Today Show? How many of you watched this week as Maria Shriver did a 5 part series on Alzheimer's Disease? Now how many of you know what Alzheimer's is? Know someone who has it? Know families struggling to cope with it? Is is really possible that no one knows what Alzheimer's Disease is in this day and age? Did it really take a 5 part series to "raise awareness and educate" us about it? Alzheimer's is important to Maria Shriver because her father died from it. I get it. But she not only is a member of one of this country's most powerful, influential and wealthy families, but she works for NBC, so getting them to give her that much airtime was likely not hard for her to do.

Now, I don't like to ever say one disease is more important than another. I wish for a world where there is no disease; no Cancer, no Alzheimer's, no Heart Disease, no HIV/AIDS, no Parkinson's no Alzheimer's and no IC. I lost my Grandmother to Alzheimer's. I watched her disappear before our eyes years before she died. I always say that I lost my Nana years before her death. She was not in there. That is no way live and no way to die. My Aunt died of Breast Cancer. We watched her suffer through mastectomy, chemo & radiation all to lose her battle several years later. That is no way to live or die either. I have lost both Grandfathers and an Uncle to heart disease; all before the age of 65. I have been personally impacted by these diseases and could never diminish how significant they are and how many other people are impacted by them too.

However, watching this 5 part series, Ms. Shriver was able to talk to numerous celebrities that were working to raise funds for research and awareness. She has access to celebrities and the platform to devote this kind of attention to an illness that has impacted her directly. So who can blame her for taking advantage of that access. It is a good cause.

But who will speak for the millions of IC patients suffering every day? IC is in desperate need of research funding to better understand its cause(s) and discover better diagnostic tools and better treatments.

Only we don't have a Maria Shriver with IC who can get on The Today Show - and not just for a 5 or 10 minute segment, but for a truly in-depth piece on IC like the one Ms. Shriver did for Alzheimer's!

And that's what IC needs. We have the the ICA, the best advocacy organization out there. But they need more money to be able to do the kinds of work it takes to get access to national media attention, exposure and funding opportunities.

According to the story that Ms. Shriver did: "more than 5 million Americans are living with Alzheimer’s disease and that number is expected to jump to 13 million in next 35 years."

35 years to hit the 13 million mark. Today, right now, 4-12 million people are suffering from IC. Today! Not in 35 years! Right now!

So, who will speak for us? Where is our "Maria Shriver"? We don't have one. So until we have one, it is - I believe - the responsibility of IC patients everywhere to rise up, speak out, help fund raise, spread the word, write letters and advocate for ourselves. Until the day comes where we have access like I saw given to Ms. Shriver this week, then it is up to us suffering from IC to do all we can to try to raise awareness, educate and support the important work of the ICA.

The ICA speaks for us. Let's help them. Otherwise we have no room to complain. It's like voting. If you don't vote, you don't get to complain. If you don't do all you can, within your abilities, to help raise IC awareness, then you can't complain about the need for more of it.

Who will speak for us? We will. The IC Community will raise our voices and stand up for the millions with IC. Eventually, we will be heard!

Thursday, September 5, 2013


If you follow my Blog, you know that I have been working toward resuming at home instillations. I posted recently about all the phone calls and perseverance it has taken to get everything I need in order to start doing my instillations at home again.  This has been an ongoing process, still having to call several more times (yesterday yet again) because I didn't have quite everything I needed to last the 90 days supply I was sent.

However, I had enough for "today" so yesterday I was ready. I was going to mix a cocktail and give myself an instillation. Now, I've done this before! I'm pretty darn good at it. Before I stopped doing them at home about 1+ years ago, I could mix up a cocktail in no time. I had a system, had it down pat and frankly think I could do it safely, accurately but quickly. 

So I was not prepared for what happened to me yesterday, not once, not twice not three times but four times!

Most of you are familiar with the usual medicines included in an instillation. My cocktail is Heparin, Lidocaine, Sterile Saline and Gentamicin. Everything but the saline comes in a vial that requires I use a needle and syringe to withdraw the medicine from the vial, then put it into the sterile specimen cup for mixing. 

So if I need 10ml of Lidocaine and the bottle is 10ml, then I need the whole bottle. The syringes I have are 10ml syringes. So that means you must pull the syringe plunger back to the 10ml marker, insert the needle into the vial, push the air into the vial, then pull back on the syringe plunger to withdraw the medicine.

I've done this a thousand times. I was taught by my doctor's nurse. My Mom is a retired Nurse so she went over this process with me too when I began doing these about 6 years ago. I had it down! 

Attempt No. 1 yesterday: I look at the Lidocaine vial and see 20ml on the bottle, so I think it's got enough meds for 2 instillations. Fine, that means I need 10ml of air to push into the vial. OK; ready, set, go! EXPLOSION!! The vial exploded all over me and the bathroom! Good thing I wear glasses as I had spots all over my glasses (wouldn't want Lidocaine in my eyes); Lidocaine everywhere!

This was very upsetting and had NEVER happened to me in all the years I'd been doing instillations. I take a closer look at the vial and see there is a second number that says 5ml so now I'm confused. Time to call the insurance company again for clarification; why two different numbers on the vial? OK; this one is my fault. The vial is actually a 5ml vial so pushing 10ml of air into it most definitely will cause it to explode. Dial back the distress and start over.

Attempt No. 2; only push 5ml of air into the vial, go super slow. Should work fine. Nope. EXPLOSION #2! Again, Lidocaine everywhere! Now I'm upset. WHY? I KNOW how to do this. What's wrong? Mom's not home so I call her and review process and she reassures me I am doing it right. OK, try one more time.

Attempt No. 3; Nope! EXPLOSION #3!! Now I'm really upset. Medicine is being wasted; why isn't this working? What the heck is going on?

Also tried doing it with the smaller Heparin vials - nope - EXPLOSION of Heparin all over!

Tears are flowing and I am at a loss. This is how it's done; why isn't it working? Call Mom again and go over procedure one more time. Yes, she assures me, I am doing it right. 

Plan B - let's try it a different way. Just insert the needle into the vial and do NOT push any air into them. Just try to pull the meds out without doing it the way I was taught. 

Well, it worked. Mission accomplished. This process is not super easy; the pressure wants to pull the needle and medicine back into the bottle, so I must hold on and have a steady hand. But it worked and I got my instillation done. I was exhausted! 

I have been doing this, as I said, for years. I know how to do this. I have taught others. I NEVER had this happen - EVER - in the literally thousands of instillations I've done in the past. 

This was an EPIC FAIL of EPIC proportions! It was very upsetting and I was beginning to wonder if it was worth it. 

Decision after calming down: It IS worth it. I will make this work. I am going to bring samples of all my meds to my next instillation appointment at the doctor's office and go over everything with the nurse again. Let's see what happens then. I have problem solved it for now and can "make it work" so that I can do my instillations.

We all face frustrations and things that set us off, as they say. This was one of those days for me. I will recover and thanks to my Mom, I problem solved things yesterday and still got my instillation done. That's the most important thing.

Gotta say, I was beginning to wonder if this was some sick joke being played on me, or if there was a hidden camera. You really should have seen it; medicine EXPLODING all over me, the mirror, the counter - everywhere! It's amazing how much of a mess 5ml of liquid can make when that much force is used to spread it around! But then, do it 3 more times and you've got a real mess on your hands. 

Oh well, this will make a great Support Group story that we will laugh about later. It wasn't funny yesterday when it was happening. But at some point I have to recognize how ridiculous it was and make a joke out of it. 

As the saying goes, if we don't laugh, we'll cry. Well, I did cry yesterday, but today it's time to laugh about it. 

Oh well, "tomorrow is another day" (who knows that movie quote?). I will figure this out and move on. We all have challenges, big and small, and wanted to share one of mine. 

Still, EPIC FAIL is all I can think about! If I was being given a grade, I would have flunked!

Tuesday, September 3, 2013


In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: "30 Things You May Not Know About My Invisible Illness".  Here are mine!

  1. The illness(es) I live with are: Interstitial Cystitis (IC)/Painful Bladder Syndrome; Pelvic Floor Dysfunction; Vulvodynia with Vulvar/Vaginal Atrophy; Epilepsy; Cardiac Arrhythmia; Degenerative disc disease, spondylosis & arthritis in lower back and neck
  2. I was diagnosed with it (IC) in the year: 2002
  3. But I had symptoms since: 2001
  4. The biggest adjustment I’ve had to make is: Having to stop working; socializing, traveling, exercising, selling my home and moving in with my parents. These are ALL the most difficult adjustments I’ve had to deal with.
  5. 5. Most people assume: I look fine, so I must be fine!
  6. The hardest part about mornings are: Just getting out of bed.
  7. My favorite medical TV show is: Don’t really have one. I do like Dr. Nancy Snyderman on NBC News but I feel all the medical TV shows are too superficial in their coverage of ALL medical issues, let alone invisible, little known diseases such as those from which I suffer. 
  8. A gadget I couldn’t live without is: All my electronics (laptop, tablet and phone); it’s my way of communicating with the “outside” world, my friends and family as well as raising awareness and communicating with others suffering from the same medical conditions I do. If the electricity goes out, the internet goes down or any of my devices malfunction, I am not a happy camper!
  9. The hardest part about nights are: Not sleeping! 
  10. Each day I take: 9 pills (really it’s 9 prescriptions = more than 9 actual pills) & other therapies you don’t want to know about. (No comments, please)
  11. Regarding alternative treatments I: have tried countless complementary and alternative therapies with little to no success. I am extremely knowledgeable about my illness(es) and the treatments (both traditional and alternative) for them. As well meaning as you may be, it makes me very uncomfortable and puts me in an awkward position when people who know very little about my medical conditions want to offer advice on what treatments I should try. If you’ve read about it, trust me, I have too and already tried it!
  12. If I had to choose between an invisible illness or visible I would choose: Well, honestly, neither. I would rather be healthy. Living with invisible disease(s), however, makes it more challenging to have people believe you. The comments, stares because I park in a handicapped parking space (yes I have a permit), getting approval for disability benefits and more - all are very painful and difficult to live with but having people not believe you because they can’t SEE it is very painful. 
  13. Regarding working and career: I miss it. I never would have believed that it would be so difficult to stop working and go on disability, but it was extremely emotional and difficult. Disability is NOT retirement and it’s NOT fun or vacation! It’s also boring and lonely, though I am lucky to have a very supportive family and very small group of close friends who work around my special needs and find ways to visit and allow me to stay connected. 
  14. People would be surprised to know: That friends actually disappear from your life when you get sick.
  15. The hardest thing to accept about my new reality has been: That it wasn’t going away. There is no cure and treatments are inadequate. Learning how to live with chronic pain & illness and giving up my “old” life - accepting that - is very hard. 11 years later I am still talking about it in therapy.
  16. Something I never thought I could do with my illness that I did wasBecome an active volunteer patient advocate talking to others suffering from my illness offering support, answering questions, pointing them toward resources; become a fundraiser, raising over $3,000 for Interstitial Cystitis research; start a Blog and use Twitter to work every single day to raise awareness for my medical condition(s) - all from my comfy chair in my office!
  17. The commercials about my illnessDon’t exist! 
  18. Something I really miss doing since I was diagnosed is: Skiing, going for a walk, going on vacation/traveling; taking my niece to the theater and being able to just do whatever I want whenever I want.
  19. It was really hard to have to give up: See #18
  20. A new hobby I have taken up since my diagnosis is: No hobbies; but again becoming a Patient Advocate and Volunteer since being diagnosed is what has given me motivation to keep going and find something positive to do even while struggling to manage my own health.
  21. If I could have one day of feeling normal again I would: Not be able to pick one thing-go skiing; take my niece to the theater again; resume exercising - where to start??!!
  22. My illness has taught me: To be grateful for what I DO have. I could focus on being miserable, never get out of bed but that doesn’t actually help. I can’t do anything about getting sick, but I can choose how to LIVE with it!
  23. Want to know a secret? One thing people say that gets under my skin is: Offering unsolicited medical advice. Ask me all the questions you want and I’m happy to tell you. But as I mentioned above, I am not looking for medical advice.
  24. But I love it when people: Call me! Visiting is even better. Just stay in touch!
  25. My favorite motto, scripture, quote that gets me through tough times is: I like a lot of inspirational quotes & positive affirmations. I use them frequently and find focusing on positive thoughts helps me cope. If I had to pick one, I think it would be: “Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, 'cause it's gonna have a long day doing it.” 
  26. When someone is diagnosed I’d like to tell them: I am here for you; you are not alone and you CAN do this!
  27. Something that has surprised me about living with an illness is: I found I was stronger than I thought I ever could be.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Drive 2 hours to just spend time with me. Call me and spend time talking with me (NOT about my illness); making me laugh (even though it hurts) - all these are food for the soul and make living with chronic pain/illness just a little bit better.
  29. I’m involved with Invisible Illness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
  30. The fact that you read this list makes me feel: Great! If you read this then I thank you for taking the time to educate yourself & learn what one person living with invisible illness is going through.

Monday, September 2, 2013


"Most of the important things in the world have been accomplished
by people who kept on trying when there seemed to be 
no hope at all."
Dale Carnegie

"You'll Never Walk Alone" - k.d. lang