RANDOM IC THOUGHTS TODAY!

Well, last night we had our local Support Group meeting and it was a great meeting. We had several new members join us and I am always so happy when we get new members who find us. I  hope they found the meeting as helpful and supportive as I think it was! Welcome to our new members!

Today was a busy day for me and I am very tired. I left the house at 10AM for my 11AM appointment at my IC doctor's office for my weekly instillation. That went well. Still no infections so that's great. The instillation really helped and that was important because I also had a 1PM appointment at the Gastroenterologist. In between, my niece who has been driving me to all my appointments and I had lunch. I wanted to take her out for all she's done for me, so we had time to kill in between appointments, so it worked out well. I love being able to spend time with my niece. It makes me happy and we get private time to visit, so it's great!

The Gastroenterologist wants me to have an upper endoscopy again and I think it's a good idea. The pain I've been having should be investigated and it will put my mind at ease to find out one way or the other if things have changed or not since I had the last one done 10 years ago. I really like this doctor; he is extremely kind, caring and sympathetic. When reviewing my medical history he was so kind and showed so much empathy for all I am dealing with. I am lucky to have found such excellent doctors to care for me. I know how lucky I am in that regard.

So the procedure is scheduled for two weeks (July 3rd) and I will be glad to get it done and find out what, if anything, is going on. Hopefully, not much and my new medication will be all I'll need to continue with. We shall see. I'm not nervous about this; it's an easy procedure, very quick and as the doctor said, certainly easier than all the IC stuff/procedures/cathing I have to do to myself all the time! He's right!

I need a nap now, so that's what I'm going to do. I hope everyone does the same!

MY IC ACTIVITIES THIS WEEK!

I have a lot of things going on this week. Tonight is my local IC Support Group Meeting and I am really looking forward to seeing everyone and catching up. We meet every other month and I was unable to attend the last meeting so I am looking forward to tonight! Since I was unable to attend the last meeting, I did get one of my friends from group to bring her iPad and we used FaceTime on both our iPads and I joined the meeting that way. I have to say it was really cool. Even if you don't have a local Support Group, if you have other IC friends with computers and want to feel more connected, try using FaceTime (Apple only) or Skype. I am doing this more and more with friends as well and it gives me the feeling of actually visiting with them as opposed to just a phone call. This can really help those of us that have a difficult time getting out and socializing as we used to. But tonight, I will get to join the group and see everyone in person and I am excited.

Tomorrow I have two appointments. I will go for my weekly bladder instillation in the morning and then in the afternoon I have my appointment with my gastroenterologist to discuss the hiatal hernia pain and GERD issues that I've talked about that are flaring up. I'm hoping to get some answers. It will be a long day and I know I will need a nap when I get home, but getting my instillation before going to the next appointment is always a good idea for me. It helps me be better able to get through the next several hours in reasonable comfort. I always try to plan it that way if I have to see more than doctor on the same day. Get the instillation first, then move on to the next appointment. I am much more comfortable when I do that.

As you know if you follow my Blog, you know I am a big proponent of using Social Media to help raise awareness about IC. I've been using Twitter almost daily (check me out @Catwoman720 and see who I am following). Well today I am excited because I am starting to get some of those I'm Tweeting following me back on Twitter! I am excited about this! I have lots more to get, but persistence seems to be helping me gain traction and anything I can do to raise #ICAwareness then I am happy! Everyone should do this. The more of us doing this, the bigger the impact! But when I got notification today that I now have several new followers on Twitter, it made my day!

So, my IC week is full of activities and opportunities. I'm going to talk to my Support Group tonight about helping raise #ICAwareness and just enjoy seeing my friends tonight. I also am SO grateful to my Support Group leader for all she does for our group and me as well. Thanks to her dedication and hard work, we have a great group! These things all give me goals and help me stay positive and focused on what I CAN do and not the negative.  I hope everyone can do the same!

ICA Twitter Page

Catherine's Twitter Page

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"The Prayer"

Celine Dion & Josh Groban

TODAY'S WALK!

Yet another day that I had to mentally push myself to get up and get out there but I did it! Nice day for it as well! Had to fend off the dive bombing male Red Wing Blackbirds who are protecting their nesting areas! They'll part your hair!

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HOW DO WE STAY THE COURSE!

Not giving up. That's a huge challenge for those of us suffering with IC and associated chronic conditions. For many of us, finding good treatment options that give us a satisfactory level of relief is a challenge all by itself. Not all doctors are knowledgeable, unfortunately, about all the options available. Not all treatments work for all patients.

One of the most common questions I see posted on the ICA Facebook page concerns issues such as  "I've tried everything there is to try; nothing works, so what now?" Good question. 

I think we all face this at various times, even if we have treatments that help. How do we learn to "Stay the Course" in the face of never ending pain?

Well, for me it was seeking help by working with a psychologist. I have learned coping techniques that I work on when I am feeling particularly frustrated and challenged. I knew before I began therapy that I was struggling, but that I simply did not want to curl up in a ball in bed and give up. I knew I wanted to fight, but how? So thanks to my IC doctor's referral, I began working with a therapist and I have learned so much since then. Even when I am faced with yet another challenge, I have a way to talk about it with a professional and work on using the coping skills I have learned.

Don't get me wrong; it's a work in progress. But I believe that, while we have no control over what happened to us, we have control over how we respond. I am on Disability, as anyone who reads this Blog knows. That was not easy to accept, but when I realized it was one more way to COPE with living with IC and all my other health problems, I began to see it as a positive. My doctor tells me to think of it as a treatment; it's yet one more thing we can do to help me live with my IC and to help take the stress off my body that I was putting on it by trying to continue to work. Not everyone needs to go on Disability. But it's just an example of one thing I chose as a means of learning to manage my IC. 

I know when things seem to be impossible and we're not finding the relief we so desperately need that it is hard to keep fighting. But I believe it's important to dig deep, never give up and keep looking at every option there is. It often takes trial and error; there's no magic pill for IC and more often than not it also takes a combination of treatments to achieve a successful level of relief.

I long ago stopped even thinking about the "WHY" of getting IC. It is my reality, so now I have to figure out how to live with it. So I got proactive. I write this Blog; I fund raise for the ICA; I volunteer and talk to other IC patients; I Tweet about IC to try to help raise awareness. I have a great local Support Group and my therapist. Does this mean I have it all figured out? No. But what it does mean is that I choose to not give up. To search out every piece of information, do what I can do and fight as hard as I can and never give up.

It's an ongoing process. We all have our good and bad days; I do too. I have had days where no matter how hard I tried, I felt I wasn't holding it together. That doesn't mean I've failed at never giving up. It just means I've had a bad day. One thing therapy has helped me with a great deal is, allowing myself to have a bad day, but now I know how to say; ok that was yesterday, today is a new day and it's an opportunity to start over.

So, I think ultimately it's a process. I don't expect to never have a bad day. But I have decided to use all the resources at my disposal to "Stay the Course"! 

"Bring on the Rain"

Jo Dee Messina & Tim McGraw

News & Events - ICA eNews - June 13, 2013

News & Events - ICA eNews - June 13, 2013

THE IC COMMUNITY

As I write often in this Blog and post answers on the ICA Facebook page, I am struck by the feeling of "community" we all share with each other due to this awful disease. It's connected us all in a way we never imagined and perfect strangers have made friends because we all share this one thing in common.

The use of social media is often talked about in a negative light and there are reasons for that. But the good that has come from the development of things like Facebook, Blogging, Twitter and so forth has provided us all with a way to connect with others suffering with the same issues and provide support, encouragement, information and even friendship.

I think this is one of the most positive things to come out of getting IC. I have connected with so many wonderful people, shared information, helped support each other and developed friendships. For that I am grateful. It's an odd thing to be thankful for, but I am. 

I don't know where I'd be without the ICA, my local Support Group and the entire IC Community.  All of you have given so much, asking nothing in return. For the most part, everyone just wants to ask questions, share information and experiences and help support each other. This is social media at its best.

“Was it you or I who stumbled first? It does not matter. 

The one of us who finds the strength to get up first, must help the other.” 

― Vera Nazarian

LOOK AT YOURSELF AFTER WATCHING THIS!

This video is circulating the internet, so many of you might have seen it, but I just saw it for the first time and it spoke to me so profoundly. I think it's message speaks for itself, so I will let it do so.

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

"Don't Give Up"

Josh Groban

TODAY'S WALK!

It is such a beautiful day today and while it took some mental pushing on my part, I figured I'd take advantage of the nice weather and get my butt out and do a little walk! It was SO beautiful out and as I passed the lake, the sound of bullfrogs calling to each other made me smile. Ducks on the lake, birds nesting, horses in the pasture; it all made the effort worthwhile. We get so few days like this here in the Chicago area (it's been the wettest Spring on record, plus record low temps) that I feel an obligation to TRY on days like this. 

As I've said before, I won't win any prizes for speed or distance, but the point is I got out and I got moving. That makes me happy, and anytime we can do anything to make ourselves happy, that's a good thing!

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PROBLEMS SLEEPING; I TOOK MY OWN ADVICE!

I know that many of us find ourselves dealing with insomnia due to our IC and associated conditions. We either keep getting up to go to the bathroom, the pain is bothering us or both. Any way you look at it, many of us find ourselves up in the middle of the night unable to sleep. 

I have written before about using various coping techniques to deal with stress, pain, negative comments from others and more. But last night I decided to take my own advice. Sometimes it's difficult to relax and allow yourself to fall asleep because of all these issues we face. But one technique I often use that has worked for me is shutting off the television, shutting off the computer, dimming the lights and putting my headphones on and listening to music for awhile.

Last night I think I listened to music for nearly an hour. It is so relaxing. It inevitably takes my mind off things that are bothering me if I give it enough time. I find myself relaxing into the music and focusing on my breathing and allowing my body to respond accordingly. 

I realize it's not a magic trick that will take your pain or frequency away. But it is a coping technique, one of several, that I have worked on and found it HELPS! Science has studied this and if you practice certain techniques that make you happy, relaxed and takes the focus off the pain (or whatever the issue is), it causes different responses in your brain which can help ease pain.

I have even gotten out of bed on occasion when I've been tossing and turning and put on my music and just listened for however long it took for me to find myself falling asleep. At that point I get up and return to bed. Usually I will fall asleep and get at least several hours of good sleep before being awakened again. But going from basically being awake all night, to getting several hours at a time, may be a small victory, but to me it is a victory nonetheless. 

Of course, there are many things you can try. If you enjoy reading, pick up a book and read until you feel sleepy. The point it to do something that you enjoy, but that takes your mind off what is bothering you. This works. My therapist connected me with an online Cognitive Behavioral Sleep program and it truly worked wonders for me. A lot of the suggestions in that program are things like this. 

If you can't fall asleep after 20 minutes, get out of bed and go to another room and try something like the music, reading a book, meditation, deep breathing. There is a lot of information online about Cognitive Behavioral Therapy for sleep. Do some research if you're interested.

I can't take sleep medication so when my therapist suggested I give this a try, I thought what the heck. I have nothing to lose. I read the materials, practiced the recommended techniques and even though I still have pain and frequency, I found I was able to get to a point where I could fall asleep and if I did wake up again, I'd use the bathroom, practice my breathing and I began to be able to fall asleep in between the times I would get up. That was an improvement. 

Baby steps. It's not a miracle fix. But it is possible to effect some level of improvement and for me, that was better than nothing. 

I wish everyone a good night's sleep!

HOW UNKIND WORDS COULD BE KILLING YOU!

I wanted to write about this because recently I have witnessed and experienced Facebook friends being the victim of unkind words. Have you ever really paid close attention to how you feel when someone says something unkind to you?

When someone says unkind things to you, or offends you, or insults you, it can cause stress, which can cause a physical, chemical, or emotional reaction that causes body and/or mental tension and may be a factor in causing disease. Science has seen this is true. So learning not to allow these situations to overly upset and stress us, is I think, a very important technique we should all work on.

I know this is something I work on with my therapist regularly. I have always allowed situations where people treated me unkindly, or treated me badly to send my blood pressure through the roof and hold on to that upset and stress like a dog with a bone. This is not good for me - or anyone for that matter. I am working on learning coping techniques so that I don't run these situations over and over again in my mind, making myself crazy. I have an over developed sense of right and wrong and when I feel that I have been wronged, it has always been very hard for me to let it go. This is something I am really working on and while it is a work in progress, I am better at it than I was before.

It's important to take note of how we FEEL when someone says something unkind to us. As noted above, something chemical actually happens inside our bodies when this happens and this can actually lead to serious health issues that can kill us. Our blood pressure is impacted, our heart races, stress goes way up. All of this is bad for even healthy people. But if you are fighting IC and other medical conditions, it is even worse for us. It can cause our symptoms to flare and send our IC and any associated conditions into overdrive. None of this is good for us.

It takes practice, but there are things you can do to "train" yourself how not to let these unkind words being said to you make you sick. Here is something I am working on, with help from my therapist, to help me deal with these situations when they happen.

Take some time - either when it happens or later - to think about the last time someone hurt you, made you angry or said unkind things about you. Write down how that made you feel; just a quick list of the feelings you felt at that time; i.e. angry, hurt, sick, upset, etc.

Then take some time to think of the last time someone said or did something that made you feel good. Think about it for a while. Try to remember as many details as you can. Work on your breathing and try to remember how pleasant and enjoyable that experience was. Then, like before, write those feelings down too. What words come to mind when you think of that experience? Happy, pleased, encouraged, loved? Write these down.

Once you have worked on figuring out the words that made you feel good from a pleasant experience, write them on a piece of paper or sticky notes. Keep them in places where you can look at them and use them to remember the happy experience instead of the negative one. Try to focus on remembering the pleasant experience that made you write down these words. Work on your breathing. This is very similar to meditation techniques that I have learned. But teaching ourselves not to engage in back and forth with those that want to bring us down is good for our health!

Learning to use positive reinforcement, positive affirmations and happy memories can actually help us improve our health. Lowering our stress level, learning not to allow others to take control of our emotions and actually impacting our health, is something well worth working on. It's easy and we can all do this by ourselves.

I also find music to be a good way to distract me from situations like this. I put my headphones on and start listening to my favorite music. Music that makes me happy and takes my mind off the negative distraction that is trying to take away our health!

Don't let others take control of your emotions, your time and your health! This is easier said than done, but not responding, not engaging in a back and forth argument with someone who is saying unkind things to you, could keep your IC better controlled, keep your blood pressure under control and, ultimately, actually save your life! 

WHAT DOESN'T KILL YOU ....

Every day is a challenge for those of us living with IC and all its associated issues. While it sometimes takes some digging deep, I believe in the message of this song and I love it. To me, it helps you to evaluate your life when something hasn’t gone your way, learn from it and come back fighting so that you can keep on going and be stronger no matter what obstacles you face.

"What Doesn't Kill You Makes You Stronger"

Kelly Clarkson

IT'S ALWAYS SOMETHING!

I guess I knew this, but it smacked me in the face this week; it's always something! Even when I seem to be dealing with all my IC challenges, maybe not feeling fantastic, but dealing with them, I tend to take for granted that those are my health issues. That nothing else is going to crop up and cause me a problem. Well, of course, it's not a conscious thought process, but it's there. It just hovers in my subconscious that my IC is really what I have to deal with and nothing else is going to go wrong.

Guess what, big surprise, that sure isn't true is it!! I have been struggling a great deal these past few days with a brand new excruciating pain that is not at all related to my IC. I have known for some time that I have a hiatal hernia and some pretty bad GERD but they have held steady not really needing a lot of management or attention and so I always put them in a separate corner in my brain. It has taken all I have in recent years to cope with my IC issues, that when other, annoying symptoms crop up, I tend to not take notice or react to them. Well, these symptoms FORCED me to take notice.

Still not sure what it is. I saw my Primary Care doctor yesterday and he prescribed a new medication for my GERD and suggested I go back and see my gastroenterologist who diagnosed my hiatal hernia and see what he has to say. For those that may not be familiar, the hiatus is an opening in the diaphragm -- the muscular wall separating the chest cavity from the abdomen. Normally, the esophagus (food pipe) goes through the hiatus and attaches to the stomach. In a hiatal hernia (also called hiatus hernia) the stomach bulges up into the chest through that opening. This is exactly where the pain is, so I am concerned the hernia may have gotten worse. I called my gastro's office yesterday and actually got an appointment for two weeks away. I was quite surprised because as we all know, it can often take 4-6 weeks to get in to see any of our doctors/specialists. But if this keeps up, it's going to be a LONG two weeks.

I have this pain, extreme headaches, everything hurts everywhere. I went for my weekly instillation today and that helped my bladder, but the nurse giving it to me aggravated the vulvar/vaginal atrophy that causes thinning of the skin in that area to tear.  So when she went to catheterize me, as she separated the skin to visualize the urethra, my skin ripped and I just about landed on the ceiling, tears streaming down my face! She felt terrible, but I don't blame her. I told her she had no way of know about this problem; the doctor does, but it's been under control for a while now and she had no reason to think this would happen. It's not her fault, but I sure didn't need THAT today on top of everything else. I got home and had some food and did something I almost NEVER do, even though I'm on disability; I went back to bed!

Today it hit home to me. I've got a bunch of stuff going on. I can't fix it soon enough, and I guess like the title of this post says, it's always something!

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

In the sick room, ten cents' worth of human understanding equals ten dollars' 

worth of medical science.

- Martin H. Fischer

"Lean On Me"
Bill Withers

"DON'T QUIT!"

TODAY'S WALK!

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LET'S ALL DO OUR PART TO RAISE AWARENESS!

It's rerun season on TV, so I'm going to follow suit and repeat a previous Blog post because I think it's SO important! 

We are always talking about the need to raise awareness about IC. Well, yesterday and today, I have spent several hours writing emails, letters, Tweets, posting on FB pages and more with as many high profile, television doctors, news programs, health magazines and news organizations asking that they cover IC!

Sometimes, you can post on a FB page, other times, you have to submit an email letter suggesting a topic you'd like to see covered. I spent the past two days on Twitter sending out Tweets about raising IC Awareness and using the hashtag #ICAwareness from the ICA's Twitter page.

This is something everyone of us with IC CAN do and I want to encourage everyone out there to not just talk about raising awareness, but to actually DO something about it! Here's a link to my Twitter page where you can check out who I am following. Join Twitter and start Tweeting. Use their Twitter pages to find their websites, Facebook pages etc. Then write or post to them there as well. 

https://twitter.com/following

Let's stop TALKING about raising awareness and let's all get involved. Social media is the way to get the message out for those of us as individuals trying to impact these people. If enough of us contact them, something might actually happen. One person like me, doing this alone, likely won't amount to much. But that won't stop me from pestering them with Tweets, emails and Facebook posts!

So, come on. Start Tweeting, emailing and Facebooking about IC! 

https://twitter.com/ICHelp

#ICAwareness

THIS CAN BE HARD!

Below is the map of my walk today. I have posted before about working on going for more walks even though I can't do what I used to but it has proven to be an ongoing challenge and I have not been as successful as I would have liked over the last few weeks.

My Mom is going through grueling and often painful physical therapy sessions following her recent knee replacement. After I got back from my walk today, I told her that I felt as though going for a walk is, for me, a lot like physical therapy is for her. It's hard, often painful, and I don't want to do it!

This can be hard! We all know this. It's easy to give in and not get out there and do my walk. It's as much a mental battle as it is a physical one. I know I allow myself to give in more than I should. I don't feel good today, it's too hot, it's too cold, it's too windy, I had a bad night, I'm just too tired. If there's an excuse, I've used it. Problem is, they are all also true. It is very hard for me, and I am sure many of you as well, to go for a walk and when I am tired from a bad night, pushing myself to do it is a real challenge. Weather impacts my ability to walk as well. Too cold and my pain goes up. Too windy and it's like trying to walk up a hill the entire time. So, while these "excuses" seem lame, even to me, they are also legitimate issues that impact my desire to get up and go.

This is the ongoing challenge each and every day. Today I did it. I was able to be positive, push through it. It was not easy. My bladder was screaming at me the whole way. I had catheterized myself right before going out, but it still felt like I had to go. When I got home, I catheterized myself again and there was just the tiniest amount of urine in my bladder, so I didn't REALLY have to go; but the pain was there the whole time. I am glad I got out early as our weather is deteriorating and it's extremely windy now and that's likely what is going to bring the rain that is forecast for today. 

I guess it's going to be a work in progress like much of the challenges all IC patients face. But I am not throwing in the towel. I plan to keep plugging away. I need to work on more positive self-talk and remember why I should try. But try I will.

Yes, this can be hard! But it's worth the effort. Today I did it. That's a good thing!

TODAY'S WALK!

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