Saturday, August 31, 2013


Remember hearing your doctor give you the diagnosis? You have Interstitial Cystitis. THAT I remember. What the heck is - pronounce that for me again, doc? - Interstitial Cystitis I asked? I got some pamphlets, but my doctor is one of the special ones. He explained it until I understood it. He answered all my questions - then and now - until I was satisfied. 

Ok, I have IC. I asked, now what? Thus began the long road to where we are today, 11 years later. I did not know it at the time, but I had entered a race. A long, slow race with lots of hills (ups and downs). This was, I would learn, to be a marathon and not a sprint. No easy fix here. I did not know that on that day I was diagnosed. We started to treat me with all the appropriate first line therapies for IC. I was optimistic. This will work; I'll feel better soon and maybe I'll have to take this medicine for the rest of my life, but that's OK. It will work and things will be better.

Well, that didn't work out quite so well. But, OK, what's next doc? As it turns out, this has been the way of things for 11 years now. My Mother will tell you that I came out of the womb basically allergic to medicine; everything makes me sick and has since I was a baby. I don't and never have, responded to standard treatments for other illnesses I had growing up the way most do. Although I was a basically a healthy child, there were signs of things to come.

I have no memory of this, Mom had to tell me when I needed to know as I filled out some medical paperwork that I had suffered from Petit Mal seizures as a child. WHAT?? I still can't remember them, but that's kind of how it goes with that kind of thing. But everyone figured I'd outgrown them when they stopped and were able to get me off medication. All would be well.

Again, that didn't exactly work out either. At a young age, I began to struggle with extreme vertigo. This was to grow into a much larger issue as I got older. The older I got, the worse the vertigo got and the more often I would experience episodes. I am 58 years old now and until about 4 years ago, no one was able to tell me what was causing it. It would take too many pages to explain how often I landed in the E.R. or how many doctors I saw looking for answers. No one could tell me what it was, or they were convinced it was something it wasn't. About 4 1/2 years ago, I had a particularly bad vertigo attack that landed me in the E.R. - again. My Mom and I agreed one more trip to the doctor to discuss this was in order. I had a new Primary Care, so maybe this would be different. Then other things started to happen too. As I had gotten older, I began to have uncontrollable, sporadic, jerking movements all over my body. They were sporadic so in the beginning, I didn't think much of it. My hand jerked but then it didn't happen again for a long time. Next time, it was my leg. Next time I bit my tongue. OK, time to mention this to a doctor. So, two issues that I felt required a visit to the doctor to see if we could unravel the mystery of both these things.

My current - and wonderful - Primary Care Doctor gave me a referral to an extremely knowledgeable and talented neurologist and I was diagnosed with Epilepsy. My neurologist explained that the jerking movements are seizure activity known as Myoclonic seizures. He also believed that all the vertigo I had been suffering from was related to my Epilepsy. He told me it is not at all uncommon for this to be an issue for Epilepsy patients. Finally an answer to two of my medical mysteries. I guess I finished that marathon at least. I am medicated and things have slowly been improving in those two areas. That is if we don't talk about the side effects from my anti-seizure medication!

But the IC marathon was still going on, even as I found answers to other medical problems, my IC would just not cooperate and respond to the many treatments we kept trying. I think if I were to take a poll of all the IC patients I know and talk to, they would report much the same struggle. It just isn't easy to find successful treatments or combination of treatments that help us and most of us are constantly working to find therapies that will relieve our symptoms to an acceptable and livable level.

I have had 12 surgeries since that day I was diagnosed. I have some pretty high tech equipment in my body to help relieve my symptoms. Much like cardiac pacemakers, these are electrical neurostimulators that help with my urinary urgency/frequency symptoms. And while I could not manage without them, they are not a magic bullet and only help with one aspect of my IC. I cannot take medication for pain, which is constant so my therapy of choice are bladder instillations made up of various medications to relieve my pain and require I be catheterized every week to instill the "cocktail" in my bladder. They work for me, but they don't help all IC patients. And again, they are more of a "stop gap"; they give me hours, sometimes a day or so of pain relief. But they are also not a magic bullet. Don't get me wrong, I am grateful for the high tech help and my instillations. I would not be running this marathon, I would have been picked up by the "sag wagon" long ago and who knows where I'd be.

As with all things IC, the battles keep popping up. You think you have one thing under control, and something else pops up. Yet we keep going; I keep going. My family is running this marathon with me. I could not do it alone. They are my "support crew" and I could not keep going without them. I am blessed to have them; not everyone is. 

But around every corner was a new hurdle to overcome. The next was having to sell my home and move in with my parents. That was a tough hill to climb. Giving up my independence was tough, adjusting to living with my parents was a challenge. One worth taking on, but still a challenge. I worked on it with my therapist, and I know it was the right thing for me to do. One more hill I have gotten over.

But now, there was another hill. Working was becoming more and more difficult. The whole reason I moved in with my parents was an attempt to give me more energy, less stress so that I could keep working. This hill was getting bigger and bigger and I couldn't get over it. Finally, acceptance of what my doctor had been suggesting for 2 years - Disability. OK, I'll do it. 

Not so fast. It's not that easy. Anyone who has applied for Disability knows that it is no cake walk, often we are denied at least once if not multiple times, forcing appeals that we have to fight. Another big hill that took 13 months to get over. But I did get over it, won my appeal and got approved for Disability. OK, that'll be good.

Wait a minute, what do I do with myself all day? I can't do much of anything. If I could, I'd still be working. I can't travel, go to the movies, drive to visit friends. This took some real work on my part to figure out how to climb this hill. I have had friends disappear from my life; I'm no fun since I can't go out. So some friends just vanished. You really learn who your real friends are in illness; I know I have. I am blessed with some truly close and dear friends who support me and make allowances for my limitations. Those are true friends.

But what to do with all my free time? My salvation has been to turn my IC into a means by which I help others. I met another IC patient who wanted to start an IC Support Group in my area. We connected and I helped her get our group off the ground. 6+ years later, we have a great group. I am also an ICA Volunteer Patient Advocate; Fundraiser, Tweeter, Blogger and passionate advocate for the millions suffering with IC. 

But the struggle continues. There is always another hurdle to overcome and surprises around every corner-hills to get over. I have long ago accepted that there was no easy answer to this disease and its associated conditions. 

So the marathon continues. I guess technically this race never ends. There are starts, and stops, re-starts, obstacles that never end. I realized somewhere back after I was diagnosed that this was not going to be easy. This wasn't like other things; there was no easy answer. I was in this for the long haul. What choice do I have. 

So, having actually run the Chicago Marathon back in 1989 before IC, I remember how hard I worked to achieve that goal. That was not easy either. It took years to reach the point where I was even ready to begin the difficult task of training for a marathon. That took months. And then there was the race. I was ready, but it was still hard. It is a marathon after all and I was no speedy racer. But I worked, I trained, I literally stumbled and fell while training, got up, kept going. I figure if I can do that, then I can do this.

This marathon is different, yet in so many ways the same. Running a marathon is something you can try to train for, plan for, but it's long enough (26.2 miles for those unfamiliar) that anything can happen. You can plan to run a certain pace, drink the appropriate fluids and wake up only to discover the temperature outside is 30 degrees above normal for October and you hadn't planned on that! You picked October because you wanted to run in cool weather and it's 80+ degrees out. So it is with IC. You follow your diet, do your treatments, take all the precautions you know to take and one day you wake up and - BAM! - you have a flare and your pain is off the charts.

So to me, I look upon this life altering disease as a marathon I must run with obstacles to overcome and surprises for which I must compensate. I will keep running this race and fighting all the obstacles and figuring it out as we go along.

After 11 years of running this IC race, I have not given up; won't give up. I have accepted that I am in a long distance event and I have to learned to live with that. I hit bumps in the road all the time, fall down (literally and figuratively). But I pick myself back up, dust myself off, and start running again.


  1. Your endurance and strength is truly inspirational, whether you have a chronic illness or not. Thanks for sharing, Catherine, and for reminding us that even when we fall, we must get back up and "start running again."

    1. Thanks Anita for such supportive feedback! It truly means the world to me.

  2. Beautifully written, Catherine.