Saturday, August 31, 2013

THIS IS A MARATHON; NOT A SPRINT!

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.




Friday, August 30, 2013

I DON'T REMEMBER ....

You know how sometimes things just pop into your head? Well, they do mine. For some reason yesterday, I guess it was while I was sitting my IC doctor's exam room waiting for him, killing time playing with my phone, checking email etc. It dawned on me I've been seeing my IC doctor for 11 years now. That's a long time, especially in medical terms. Well, it's a long time to me anyway. I know there are patients out there that have been struggling with their IC for even longer. But any way you look at it, 11 years is a long time. My niece is 21 and she's spent half of her life watching me be sick. That's a long time.

That's when the thought hit me: I don't remember what it's like to NOT be sick. I've actually adjusted to this life with all it entails. I have my routines, my doctor appointments, my nurse appointments, my medications, my instillations and so on. I am used to it. In the beginning it was life changing as I think it is for all of us diagnosed with chronic illness. In the beginning it's really hard - not that it ever gets "easy". But early on, it's common for all of us to struggle to figure out how to live our lives with our new disease. Can we still work? What can I still do? What do I have to give up? And it's not at all unusual for this process to be emotional and difficult to deal with. It was for me. And it's still a work in progress. I still work with my therapist on coping with how having IC and everything else I have, has changed my life but I think I've made great strides in the coping area. Well, until I have a meltdown when something goes wrong!

But it's strange to me that this has become my "new normal" and I've completely forgotten what it feels like not to be sick. Of course I remember events, fun times, things I did. But I have to really think about it to try and remember how I felt during those times. I was just not sick; I was fine and I could do whatever I wanted.

We're all different and we all cope in our own way. For me, planning is a big thing. And I don't remember ever being that way before. It's a new, more "learned" behavior that developed when I got sick. It doesn't bother me that I'm like that. When given proper warning, I can decide if I want to do something or not and if I do, then I can make appropriate plans and do what I have to do to so things go well.

But as for feeling healthy and well and not spending all my days figuring out how to get through each day - I just don't remember. I can look at pictures of me skiing, at the beach, going to the theater with my niece, friend's weddings and remember that I was there. Remember it was a good time. But it feels so far away, almost as though I'm looking at someone else's life.

Sometimes I lay in bed before falling asleep, thinking about the good times. It's like opening a jam packed filing cabinet that I have to dig through to find the memories from before I was diagnosed with IC. Until I can find the memory in the file cabinet, I just don't remember. 


From the Memory Filing Cabinet Before IC:
Me After Finishing the Chicago Marathon - October 1989



Wednesday, August 28, 2013

WHO GETS TO DECIDE?

I began my day as I usually do. Using Twitter, checking the Internet, reading various stories and news articles, but mostly pieces having to do with illness, disability etc. Then I run across this article in The Huffington Post entitled: "To the Author of the Anonymous Note Left on my Car Window". I hope you'll read it; here's a link to the story.


With IC Awareness Month rapidly approaching as well as National Invisible Chronic Illness Awareness Week September 9-15, 2013, I felt compelled to write about this story myself. Clearly, the level of understanding and awareness about invisible illness is nowhere near where it should be. This article is so upsetting. It's difficult enough for those of us with invisible disease to deal with the stares or comments or notes because we are not in wheelchairs, but when a mother with one child in a wheelchair and another with the same disease but not yet wheelchair bound, gets attacked like this, there is something wrong with our society.

This natural assumption that everyone on Disability, using a Handicapped Parking Placard, using Medicaid, Food Stamps - whatever - is; no - MUST be abusing the system and taking advantage of unneeded services is a sad commentary on society and it's unwillingness to feel empathy for those struggling in often many ways they could never understand. This constant barrage of attacks from people accusing patients using these services of not needing them, telling us why we shouldn't be parking where we park; telling us how to live our lives - well it leaves me speechless!

Even before I got sick, I would never presume to think that someone parking in a handicapped space was abusing a privilege they didn't deserve. Is there abuse? Of course there is. There is always going to be someone who tries to "game the system", but there is inadequate research to make snap judgements about someone.

And when did it become OK to stand in judgement of others without knowing them, knowing their circumstances or anything about them? The next time you THINK you see someone abusing these privileges, ask yourself the following questions:

  • Are you absolutely sure nothing is wrong with them?
  • Many people, especially those with autoimmune & invisible diseases, seem just fine most times, but you would probably be surprised at the amount of physical pain they are in, exacerbated by walking short distances in many cases.
Don't judge a book by its cover. Instead, why not think to yourself "there but for the grace of god, go I". How would you feel if you were on the other side of this? If suddenly one day, your life was turned upside down and you now had a chronic, incurable, painful disease that caused you to sell your home, move in with parents, apply for Disability Benefits and yes, a Handicapped Parking Permit? How would you feel if someone accused you of not being sick and abusing the system?

Before you judge, stop and think for a minute. Do you honestly believe that being on Disability is fun? It's not. It's lonely. It causes anxiety and depression in many. It's emotionally and physically draining. Learning to live in chronic pain is hard! Not being able to leave one's house except maybe on the one day you decide to go with your mom to the grocery store so you can just get out of the house; that's the day someone decides to judge you! 

So, who gets to decide if I am disabled or anyone else is disabled? Some stranger in a parking lot who sees what they want to see? Who gets to judge me and the millions suffering with invisible and visible disease? My doctor gets to decide. Not anyone else. My doctor. And if my doctor believes that I am disabled, deserves a Handicapped Parking placard, etc. then no one else has the right to decide anything about me and my medical status.

Who gets to decide? My doctor! That's who! I am what a person with invisible illness looks like!                                                  

Sometimes I Look Like This!



But Sometimes I Look Like This!




And Sometimes I Have to Use One of These!












Tuesday, August 27, 2013

AWARENESS!

A little something to get everyone psyched up for the
important upcoming awareness month & week:

IC AWARENESS MONTH
SEPTEMBER 2013



NATIONAL INVISIBLE CHRONIC ILLNESS AWARENESS WEEK
SEPTEMBER 9-15, 2013


Monday, August 26, 2013

THE PICTURE OF IC!

I was emptying boxes of instillation supplies into my bathroom closet, filling my pill dispenser for the week and looked around and thought - WOW! This looks like an aisle in the pharmacy! This is the picture of IC for so many of us! So I thought why not take a picture of it and use it to help raise awareness. I Tweeted this photo today and I wanted to put it on my Blog as well. Some version of this IS the picture of IC! Your line up may contain different meds than mine, but I'm sure we'd all have a similar photo as this.

To live and have any quality of life, most of us have to rely on multiple therapies and I think the photo speaks volumes about what it's like to live with IC and any other chronic illness. 


"The Picture of IC"



Another Photo of what living with IC looks like!


Saturday, August 24, 2013

IT WASN'T EASY, BUT I GOT IT DONE!

I posted about a month ago about how happy I was to find out that my Medicare Prescription Drug Plan had a Specialty Pharmacy Division and that after much time on the phone, we determined that everything I needed to resume at home instillations was covered. I was assured all that was required was a FAX to my doctor, his sign-off on all I needed and we'd be done and my medications and supplies would be shipped.

Cut to a month later and I still don't have everything. It took several weeks and ONE of the medications was delivered, but where were the other three meds and the supplies? Time to make another call to the insurance company where I was assured that the next box was to be delivered in a day or two with everything else I needed. OK; that seemed reasonable.

Cut to several days later and the box arrives. I'm excited and open it up like a kid at Christmas (can you tell I love my instillations!) and start taking out the contents. One med; check. Second med; check. Third med; check. Needles to withdraw meds from vials; check (& free). Last item - drum roll - 60ml syringes. Uh, NOT check. They sent me the wrong kind. If you've ever had an instillation you know that once it is mixed, you need a 60ml plastic syringe with a catheter tip that goes into the funnel opening of the catheter so you can push the instillation into your bladder. I got sent a 60ml syringe with a Luer Lock tip (one that screws into some other thing). It absolutely will not work for doing instillations.

Time to make another phone call to the insurance company; spend about 40 minutes on the phone re-explaining what I need and what they sent. Woman assures me she understands, they have it and they will ship it immediately. OK, seems reasonable. Where have we heard that before?

A week goes by, no box is delivered. So yesterday, guess what, time for another phone call. Ugh! I spoke with a great guy who was very kind and helpful, but had to put me on hold to speak with their pharmacy to make sure they had what I needed. Uh, I've been told several time you do, you already have the prescription from the doctor with EVERYTHING needed on it, so no you don't need a prescription for this item - you sent me the WRONG thing. The right thing is on the prescription; you just need to get it and send it to me. Puts me on hold; 25 minutes into being on hold the phone goes dead! My call has been disconnected! Blood pressure going up!


Call back, have to re-explain to someone else and try to get to the guy who was helping me and knows what I'm talking about. They can't get him; they'll have him call me back. By now I have to go to the bathroom and of course, I miss his call back. Call the insurance company again and go through entire process again of trying to reach the nice young man that has been helping me. The woman I was speaking with looks in my records and basically blows me off and says, yeah it's in the computer and it will be shipped today. I said, that's what I was told the last time. I want to speak with the young man who has been helping me since he knows what I need. Again, must leave message.

Finally, he returns my call and we go over everything. Yes, they have the catheter tip 60ml syringes; Yes they will ship them overnight delivery so I get them on Saturday; Yes, Saturday delivery is available in my area. Assures me if there is a problem, he'll get back to me but I should expect my box on Saturday (today). 

Later yesterday afternoon, my phone rings and it's the number for the Prescription Drug Company and I think, oh sheesh - he said he'd only call if there was a problem. But in fact, he was calling to reassure me everything was shipping as promised; they did have what I needed-100% sure and I would most definitely get the box on Saturday. I thanked him very much for the follow up. That just doesn't happen these days and it really was reassuring and I appreciated it.

Last night, I get another phone call from the insurance company wanting to talk about the item I called about last week that was wrong (yes I made that call as I said above). But they tell me they have some item that I've never heard of, don't know what it's for, don't need it and now I understand why I never got the promised item that I did need. I explained this - again - to this person and told them whoever I spoke with last week to explain what I needed, who assured me she understood what I wanted, clearly did not and messed this whole order up. I asked that they make sure that this mystery item get taken out of my record, please do not ship it or charge me; make it disappear. I explained I have been speaking with someone, almost all day long, and I have been assured the problem has been resolved. They apologized and said they would remove this item from my record and I hung up. Now to wait and see if my box would arrive on Saturday and if it was REALLY the right item.

About 20 minutes ago, the UPS truck pulls up and I go down to meet the delivery man. Said to him "can you tell I was expecting you?" - he laughed. I took the box, opened it and - VOILA - it's the right thing!! YAY!

I'm exhausted! But sometimes the effort is worth it. I am so happy to be able to do my instillations at home once a week to supplement what I get at the doctor. 

It wasn't easy, it took a month, but I got it done! It took many phone calls and there were problems as you can see, along the way. But being persistent paid off. I now have everything I need and going forward it will be much easier to refill as all is correct in the system now.

Big sigh of relief!

WRONG 60ML SYRINGE

THE CORRECT 60ML SYRINGE


Wednesday, August 21, 2013

TODAY I DID SOMETHING!

If you follow my Blog, you are aware that I am always trying to go for a walk but it is a never ending struggle. It's hard enough due to my IC and pain, but I have much less tolerance for dealing with extreme weather - either cold or hot. I joked with my family the other day, that as I've gotten older and especially since IC, I have about a 10 degree temperature variance that I am satisfied with. Otherwise I am either too hot or too cold and both make me feel lousy. So it's easy to find a reason to not go outside for a walk.

I have always said I much prefer to walk outside. I have, in the past, always loved being outside in nice weather. I love our trails and nature. But it is really become a physical challenge for me and the days I do it, I feel accomplished but then I am wiped out. I never seem to string together more than a day or two before I feel like I need a break which ends up being more days off than on.


Today, my 83 year old Mom was getting ready to go to our fitness center (we have a small free homeowners fitness center that I can literally see from my house). She had knee replacement surgery 3 months ago and has been working so diligently on her rehab and was going to the fitness center to ride the stationary bicycle. So I thought for a moment, and called to my Mom that I would go with her and use the treadmill.

I did really well. I did 1.75 miles in 33 minutes and felt less discomfort on the treadmill than I do when walking the trails. I actually worked up a sweat, which is good. I have always said I really didn't like walking on the treadmill because it's so boring. But I brought my iPhone and headphones, chose some upbeat music and started walking. The time went faster than I thought it would and, while I will admit that my bladder was "whispering" to me, but as I said already, it was much easier to walk on the treadmill than outside. 

So, I feel like I should work harder on going to the fitness center more, no matter what the weather is. Even if it a perfect day outside, I apparently feel better on the treadmill, there is a bathroom there so I can pause the treadmill and hop off to use the bathroom if I need to, and I feel like I'm actually getting a better workout without hurting myself.


Maybe today was just a lucky day. I'm sure there will be days when it may not go as well. But I feel good about doing SOMETHING today and want to at least TRY to go more often. I want to keep moving and get some exercise. I know it's hard for many of us with IC to do any form of exercise; it is for me. But this seems to be something I should work on more and see if it's something that will work for me on at least a semi-regular basis. 

I feel good right now. Today I Did Something! 



Sunday, August 18, 2013

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"Courage is not defined as the lack of fear. Courage is doing it anyway,
even though you are afraid. It's the ability to take action in spite of fear,
challenge, pain and uncertainty."
Cynthia Perkins

"Never Let Go" - Josh Groban


Friday, August 16, 2013

LEARNING HOW TO LIVE WHILE BEING SICK!

Remember when you were healthy? Did you take it for granted? Did you just go about your day doing whatever you wanted without having to think about the consequences? It's not that we weren't grateful in our souls to be alive and healthy. But how often, if ever, did any of us actually THINK about the gift of our health?

Then we got sick. The diagnosis of IC (and who knows what else to go along with it). And our lives were changed forever. Next thing we know we're going from doctor to doctor, seeking relief and treatments to help our symptoms. Many of us struggling for years to find the right doctor; some still looking. Tests, treatments to try. Treatments that don't work. Bad side effects to deal with. Changing course because Plan A isn't working, so let's try Plan B. As my doctor has said to me, we get put on the "lab rat wheel" and feel as though we are living our lives in doctor's offices, picking up prescriptions, going to hospitals, having surgeries. The list goes on and we find ourselves obsessed (for good reason) with our illness and everything else falls away. I'm single, but I can only imagine the challenges people with families face after finding themselves on that lab rat wheel. Something we all deal with I think, on some level, is Guilt. Guilt over not being able to care for spouses, children and homes as we used to. Guilt over calling in sick to work frequently. Guilt over canceling social engagements with friends. Guilt over going on Disability. Guilt. I hear this a lot. 

But one of the things I think we all need to do is learn how to LIVE while being sick. It's not easy. But, as the saying goes, when on their deathbed, no one ever wished they'd spent more time cleaning their house. So if you are lucky enough to have a "good" day, don't blow it trying to clean your entire house, do all your laundry, go shopping, cook dinner and be super-mom (or dad). 

I know I rely on family and friends for support. I know this is a challenge for many. This is one of the things that happens to people who get sick. Friends fall away. I've lost friends; I think many of us have. But I still have a very small group of friends that have stuck by me and I cherish them and the time we spend together. I cherish my family and the times we spend together at family gatherings.

For me, learning how to live with being sick has meant working with a psychologist on these issues. I don't have all the answers, but acceptance is a big thing in helping me learn to live with chronic illness. I have it; I can't change it. So how, then, to LIVE with it? That is the question.

Even if your circle of friends is smaller than it used to be, make time to be with the friends you still have. You don't have to go out. Sometimes you can just ask them to come visit and spend a little time chatting. It's amazing what it can do for your spirits, just to spend time with friends. 

When we have family gatherings, I participate and I may not be the life of the party, but I am happy to sit in a comfortable chair and just BE with my family talking and being together.

I try to go for my walks when I'm up to it. Even sitting on the deck on a nice day lifts my spirits. On really good days, I may even be able to go out to lunch with a friend.

The idea is just to find things that make you happy and take your mind off being a patient. We may not be able to do what we used to, but figure out what you CAN do; then do it!

Chronic illness changes everything. Finding treatments that help us feel up to doing anything is hard. But sometimes I think it's important to stop, take a breath and try to do something that isn't related to being sick. This is something I try to do.

I have a dear friend that lives 2 hours away and I can't drive to visit her anymore. So she has happily made the drive up to see me as often as she can. She's coming again on Monday. When we can't visit in person, our latest thing is to Skype. Most new computers have a built-in web cam, but if yours doesn't they are not expensive at all. Skype is free and very easy to use. If you have friends, family etc. that you can't get to see because of your illness try Skyping. It's really fun! My girlfriend and I were on Skype for over an hour last week and she was able to show me the new outfits she bought for her new job. It was so much fun, put me in a good mood and took my mind off my pain. She'll even wait if I have to get up and go to the bathroom! That's a good friend!


These are just some of the things I try to do in order to make my life be about more than just being sick. It's easy to get caught in the lab rat wheel, but we need to try to take time for ourselves, and do whatever we can to help us cope with all we are dealing with. Letting our IC take over our lives isn't good for our IC. Stress is one of the worst things for overall health, let alone someone suffering from chronic illness. 

Whatever works for you is what you should do. It's in the trying and changing our mindset. I was having a down day last week, and feeling lousy. I stopped, picked up the phone and called my best friend. It changed my entire mood and when that happens, I actually feel better.

So give it a try. Do whatever you can, or what works for you to help learn how to LIVE with being sick. IC is what you have; it isn't who you are!







Thursday, August 15, 2013

THE SAGA CONTINUES!

I posted a few weeks ago that "The Streak Was Over!" and after close to 6 months going without a UTI (after a 4 year battle), I had a relapse and gotten a UTI. So close! One week short of 6 months! It was frustrating and certainly disappointing, but I filled the prescription for the antibiotic and took it for 7 days hoping to clear it up.

When I was in the office the other day for my instillation, I told the nurse that I didn't feel 100%. I complained of still feeling symptoms of a UTI and so they checked before I left. The quick test again showed trace blood and those nasty leukocytes so they told me they had to send it out for a culture. 

I got the call - again - today. The culture was positive and the UTI has not been cleared up. My doctor wants to switch antibiotics and see if that will knock it out once and for all. It's hard not to feel frustrated that after almost 6 months, I might be back on the infection seesaw. I hope not. I will try to focus on my meds and do all that is within my power to help break this relapse and get back on track. But it's hard. We all know what it's like to face frustrating situations when it comes to treating our IC, so I know anyone reading this can relate. I am not alone in this. That gives me strength; knowing that I am not the only one fighting battles. 

Sometimes there is just no figuring things out. I try very hard not to focus on the "why" of stuff like this. It does me no good. But it's hard. Learning techniques to cope with setbacks is something I'm continually working on. I think I'm doing much better coping with setbacks, but it's still a challenge. But I will keep working on it. 

I called the pharmacy and asked them to let me know as soon as my prescription is ready so I can start my treatment ASAP! This time it's 10 days so hopefully that will do the trick. I will focus on not thinking the worst. It's one relapse. Even though we didn't knock it out with the first round, we will do it this time! I will be positive. It's not the end of the world. 

But this is a process for me. I spent 4+ years having UTI after UTI after UTI over and over and over again. So I am somewhat programmed to think the worst. I don't want to think that way, so I will work on it as the UTI saga continues.

The pharmacy just called; my prescription is ready, so off I go to pick it up. 

Here's to better days ahead!



Wednesday, August 14, 2013

FOCUSING ON THE NEW!

"The secret of change is to focus all of your energy, not on fighting the old, but on building the new." -- Socrates

I saw this on Twitter today on Marlo Thomas' Twitter page. This really resonated with me and I re-Tweeted it because I liked it. Often I know I have a tendency to focus too much energy on what has happened in the past with regards to my IC. Maybe you can identify with that; maybe not. But for me, this is an issue that I recognized in myself and work on with my therapist frequently.

A perfect example is over focusing on my history with chronic UTI's. While I did have a relapse recently, I went nearly 6 months without an infection after battling them for 4 years. Did I focus positive energy on that accomplishment? I tried. But lurking in the background all the time was the constant worry of when will this end? Instead of focusing on the success I was having "in the moment", I would worry about the past and if it would happen again. Or often focusing on something like these UTI's and focusing too much energy on the WHY instead of focusing on what I can do going forward to treat my symptoms.

I think the same is true of focusing a lot of energy on flares. This seems to be a common theme among IC patients; spending so much energy on trying to figure out what they might have done to cause a flare. Of course sometimes we know; we ate something we shouldn't have, we overdid it physically, we're stressed out about multiple issues and more. When we KNOW what caused a flare, it's ok to recognize it and move on knowing you won't do that again. But sometimes there is just no reason; sometimes flares just happen. But so many of us focus so much energy on trying to figure it out instead of focusing on what can be done to help alleviate the symptoms of the flare and move forward.

None of this is an easy task. Like I said, I work on this with my therapist. I've always been kind of a "glass half empty" person and never liked that about myself. I think the same could be said about many of us suffering with IC. It's NOT easy. We are struggling with so much and often having a very difficult time finding successful treatments. So I'm not saying everything should be sunshine and roses every day when you wake up in pain and don't have good options.

What I am saying is that I felt that way too but did not want to. As we all do, I had a lot to deal with and it was causing anxiety and I didn't like that. I didn't like bursting into tears all the time and I really did not want to spiral into depression.

So for me that meant accepting the referral from my IC doctor to an excellent psychologist. She has been a life saver and I think it was the smartest thing I've ever done. Learning to COPE with our pain and struggles can actually help with how you feel. It's not a miracle fix, but it helps. And, I don't know about you, but I'll take any help I can get. It's one tool in my tool box of things to use to help me focus on "building the new" which to me just means focusing my energy on how I can help myself. Identifying what that means, then going about doing it. Talking to my doctor continuously about options, working with my therapist, writing this Blog, my Support Group and more. All these things help me to take the focus of what is past and what I cannot change and help me look forward and work toward figuring out what I CAN do to help myself.

Every day is a new day. What happened today can be set aside and we can start anew each and every day. So all I'm suggesting is that this is something to think about; see if this speaks to you as it did me. See if you feel like you want to make a change and then figure out how to go about making that change.





Monday, August 12, 2013

HOPING FOR THE BEST!

If you're following my Blog, you know I posted a few weeks ago about my persistence paying of with my Medicare Prescription Drug Plan and figuring out coverage for resuming at home instillations.

Well, nothing is ever as simple as it seems, so it's been nearly 3 weeks and I still don't have all my meds, but I will by tomorrow. As usual, there was faxing back and forth between the doctor and the insurance company, some confusion about items I needed and things I don't need, but it appears we have it all sorted out. I got one med I need today, one I don't need, and the rest of what I do need I am told will be here tomorrow.

Now the only issue remains - since I posted about resuming instillations, I also posted that my infection free streak had come to an end. I just finished a round of antibiotics this past Thursday and I am back on my preventive routine. That said I am now a bit nervous about starting instillations again at home. I wasn't even doing them and even though I managed nearly 6 months without an infection, there is a level of nervousness that resuming the instillations will trigger a relapse into chronic infection state. So I will have to see how it goes, go slow and maybe see if I can get the doctor to answer a quick question tomorrow when I am at the doctor's office for my instillation and get his opinion on this. We'll see.

One day at a time as they say. I am glad to have all the Specialty Prescription work out of the way and now that I am in the system, it will be easy going forward. It takes patience, research and really digging sometimes to find out if your Prescription Drug Plan will cover instillations at home. But it's worth it if this is something you like and want to be able to do more often.

So, I will "hold my breath" and hope for the best!




Sunday, August 11, 2013

INSPIRATIONAL QUOTE & SONG OF THE DAY!

Today's Inspirational Quote is really intended to help those of us struggling with IC and all it's associated conditions who have people in our lives that we feel don't truly understand. But it's also meant for everyone WITH IC as well. We need to support one another, not judge each other and the decisions we've made about our treatment options. It's great to share our experiences with each other, but we should never be judgmental about another's medical decisions. So for today, this is my message.

We should ALL remember to "walk a mile" in someone else's shoes for we never know what someone else is dealing with!


"You Are Not Alone" - The Eagles


Friday, August 9, 2013

CHOOSING THE RIGHT DOCTOR!

I saw the photo below and it made me laugh out loud and we can always use a good medical joke when this is our life! I know this is meant to be funny and it is; but then it got me thinking at a deeper meaning. How many of us have been in a doctor's office that we thought was not as clean as it should be, did indeed have dead plants, the staff was too busy chatting with each other to notice you standing at the window waiting for help, the doctor seemed distracted or just plain impatient. Worst of all, the doctor told you that your IC was "all in your head"!




Truth be told, most of us have probably been in a situation like this at some time or another. I have left doctors because of their arrogance, lack of concern over my level of need and if they couldn't get me out of their exam room in 10 minutes or less with either a prescription or a referral to another doctor, they basically would just walk out! I know I see a lot of posts from people talking about being upset at having a difficult time finding a CARING doctor, let alone one that understands or is knowledgeable about IC. I am lucky; I was sent to one of the top doctors in my area for IC the first time. He is simply, the kindest, most caring doctor I have ever encountered in my whole life and I don't take it for granted.

So, what are some keys to finding the right doctor for you? One resource I found with some great information is this website that I like written by a doctor that I also follow on Twitter, KevinMD.com

Check out this article for some good tips on finding the right doctor for you.



There are plenty of articles on the Internet on this subject to help you in your search for the right doctor. But remember, being a prepared patient is one of the things I believe will help you work with your doctor and make your appointment efficient, yet productive. Bring a list of questions so you don't forget to ask what you want. If you've read an article about IC or other associated conditions and treatments, bring those along and don't be afraid to ask about them and what your doctor knows about them or their opinion. Bring a pad and take notes! So often we walk out of the doctor's office and get home and can't remember some of the key points you discussed.

Here's good article on "Making the Most of Your Appointment" from WebMD that I think is worth a read.



But when should we make the decision to move on if we are not happy with our doctor or the care we are getting? Often patients feel uncomfortable leaving a doctor even though they are not happy. I have talked to patients who have actually said to me "can I really switch doctors?" Of course you can and sometimes you should. Again, here's another great article from KevinMD.com on the "10 Reasons Why You Need to Change Doctors" that I think is worth the read.



I felt the number one reason on this list is something many IC patients can relate to. Almost all of the reasons on this list are things I know we have all complained about. So if you find yourself feeling that these describe your feelings and experience with your doctor, it's time to move on.

If you are not happy with your doctor, the care you are receiving; if your doctor meets any of the criteria in the article above, don't hesitate to start looking for another doctor. Do your research as suggested, go prepared and don't stop looking until you find the right doctor for you! 

Choosing the right doctor for ourselves and family is very important. Think about these issues the next time you are in your doctor's office. Does your doctor meet all your requirements; are they really listening to you? Do you feel rushed? Is your doctor defensive or unwilling to listen to questions about treatments you want to consider? 

If any of these are true for you, it's time to start looking for a new doctor! 





Thursday, August 8, 2013

YOU ARE NOT ALONE!

Yesterday, the ICA posted what I felt was an outstanding, positive and helpful post for everyone in the IC community. It said, simply, "You Are Not Alone" and included a link to the ICA website with some excellent resources for patients to check out.

This really resonated with me. We have all come together on the ICA Facebook page and created a "community" where we support, encourage and share information with each other. But the ICA is also a very important part of this community. Without them, the very Facebook page where many of us connected and in many cases, developed friendships, would not exist and we would never have met. 

We are NOT alone. Not only do we have the relationships we have created online with each other, but we have the ICA who works tirelessly for each and every one of us suffering with IC. Their work is important and they are doing more and more every single day to help raise awareness via many different avenues: social media, the Billboard campaign, the ICA website, Facebook, Patient Forums, lobbying Capitol Hill for additional research funds, creating a great new educational tool for doctors to use to learn more about IC and even get CME credit for it! 

The support from the ICA may seem, to some, "intangible" but if you look at it closer, you'll see what they do each and every single day to help each of us.

We are not alone. We have each other. It never ceases to amaze me how supportive everyone on the ICA Facebook page is. Sharing experiences, treatments, successes, struggles. Whatever they can to help another patient deal with their IC.

This is a wonderful thing. To know we are not alone. That we have so many individuals, that in most cases, we have only met online, helping us through our IC journey. That we have a great organization in the ICA working so hard to find better treatments, provide resources, support and information is a blessing.

I really was moved by that post yesterday and wanted to put my two cents in on the subject. Without the support of our fellow IC patients, the ICA and anyone else in your life that you feel supports you, this would be an even harder challenge than it already is.

No, we are definitely not alone!



Wednesday, August 7, 2013

SET-BACKS & PROGRESS!

I recently posted that my oh so close to 6 month streak of being UTI free had come to an end. I was called last week and told that, in fact, I had gotten a UTI and needed to get a prescription for an antibiotic.

After a more than four year battle with UTI's, having 17 last year alone, things had finally turned around and I was rapidly approaching the 6 month mark where I could look at 6 months with no UTI's as a significant landmark for me. Then the call came. I had actually been doing so well for such a long time, that my mind set was that my symptoms just HAD to be a flare and UTI never even entered my mind. Last Tuesday when I was in for my weekly instillation, they took the usual urine sample and checked it before I left. Even then, when the nurse said it was positive for trace blood and leukocytes, I still didn't think anything of it. After all, I always have trace blood and I've even had leukocytes but didn't have an infection. So I was not alarmed, but the nurse told me they would send it out for a culture to be sure. I still did not expect to hear anything assuming it would be negative. That's how much I had finally convinced myself I had broken the string and all would be well.

When I got the call and my nurse said she had some bad news, I couldn't imagine what it was. Then she said those dreaded words: "you have a UTI". I was literally dumbfounded with my mouth hanging open. I could not believe it. I was so surprised that it just goes to show how strong our minds are. I just had convinced myself it wasn't going to happen that when it did, I was really surprised.

But, here's the thing. I have made a lot of progress in learning to cope with bad news or set-backs that I did not fall to pieces when I found out. Yes, there is disappointment. There is a level of concern that going forward, will I be able to get back on track. But I am not the basket case I would have been in the past. My work in therapy has helped with this a lot, but so has time. Just learning over time to try to maintain and even keel emotionally has been something I learned to work on not long after being diagnosed. It is something I continue to work on and consider a "work in progress". But I am making strides in this area and I think it's important to share this with everyone.

I know when I was first diagnosed, my emotional state went up and down with every piece of good or bad news. I was a mess. IC can often be a roller coaster when it comes to how well or not we are doing. Having to try different treatments, some working, some not. If we allow ourselves to get too high when we have a "good" day, when the inevitable "bad" day happens, we drop off the cliff with a bam! I learned early on I did not like getting too excited about good things and I certainly didn't like falling apart into a ball of tears with struggles and challenges or bad news. So I have worked these 12 years to just take it one day at a time.

Yes, I had myself totally convinced the UTI problem was under control to the point I never even suspected I had one. But I was not in an overly happy state about it. I was pleased and felt confident that things were going really well. I knew I wasn't going to NEVER get another UTI; it was just a matter of time. So even though I was surprised and taken aback when I got the news, I have been proud of my response to this set-back. I told the nurse yesterday that of course I was disappointed but I knew it was going to happen at some time. I am taking my antibiotics and we'll see how it goes after that.


One day at a time. There will always be set-backs, but I am making progress. It may be a work in progress, but I am definitely making progress. So I have decided to be proud of myself, and move forward. 

There may be bumps in the road ahead. I don't know how I will react if that happens. But I will continue to talk about this in therapy. Work on it daily and make it my goal every day to just be OK with whatever that day brings and do whatever is necessary on each day to deal with what comes my way.




Monday, August 5, 2013

INSPIRATIONAL QUOTE & SONG FOR TODAY!

"Your Present Circumstances Don't Determine
Where You Can Go;
They Merely Determine Where You Start"
- Nido Qubein


"I Didn't Know My Own Strength" - Whitney Houston


Sunday, August 4, 2013

THE THERAPY POOL!

My wonderful sister-in-law belongs to a health club affiliated with one of our major hospital systems. She took me recently for a free visit and wanted me to try their therapy pool. I loved it! So she got me a week FREE to use the facilities. So today I went for my first day. 

I spent an hour in the therapy pool and it was wonderful! Therapy pools are generally salt water, which makes you more buoyant. It is NOT too hot like a hot tub, but a warm relaxing temperature. It feels so good on my body just stepping into the water. My sister-in-law taught me an exercise I can do using one of those floating "noodles". I put it between my legs and use my legs in a cycling motion and my arms as if doing the breast stroke. I was so surprised that even having the noodle between my legs didn't bother me. It's very easy to not have it jammed up against any tender points and it helps you stay afloat. I spent and hour doing laps like this and not only did it NOT hurt, it made me feel better. My pain was less and yet I got out of the pool after an hour and felt like I actually exercised! I felt like I did something good for my body; keeping moving and using my arms and legs without it causing pain, is such a good thing. I felt so good afterward it made me happy.

I don't think I'll be able to afford to join the health club; it's very expensive. I may try to investigate, as they are affiliated with the hospital system where all my doctors are, if there are any special memberships for patients on disability or the like. We'll see. I'll talk to my doctor and see if he is willing to write a prescription for water therapy. It's all worth looking into. 

Regardless of what happens, I am going to enjoy my 7 Free days at the Club and the wonderful Therapy Pool!

I feel so great after using the pool, it's really amazing. I am grateful for the gift I was given to be able to do this for even a few days. I'll enjoy it while I can.



Actual Photo of the Pool Room -
Therapy Pool at Far End of Picture

Saturday, August 3, 2013

IT'S A BEAUTIFUL DAY!

Not glamorous, but relaxing and having breakfast
on the deck after my walk. What a perfect day!
I didn't feel much like walking, but we get so few of these
perfect days, I figured I better get my butt up and
get out and do something. I am glad I did! I'm tired
and will rest today, but at least I got something done!



Create Maps or search from 80 million at MapMyWalk

Thursday, August 1, 2013