TECHNICAL DIFFICULTIES!

Hi All - Just wanted to put up a little something to let everyone know that I'm have computer issues. Had to go through some convoluted procedures to get this up, so won't be posting much over the next few days at least until I get my laptop issues resolved. So in the meantime, I'll just leave  you with a little positive message:

INSIPIRATIONAL QUOTE FOR THE DAY (A DAY LATE!)

This is what I am working on these days. I hope this provides some inspiration to everyone in some way, no matter how small.

GOTTA KEEP MOVING!

One of the things that has bothered me the most since being diagnosed with IC, and even more since going on Disability, is the fact that I can't exercise anymore. I used to run or walk, hike and ski. Giving up these activities has been something that was very hard to do, but has been necessary. Skiing had to be given up when I got my InterStim because I couldn't risk falling down and dislocating one of the wires which would land me back in the O.R. to reposition it. Giving up skiing was the hardest of all as my whole family skis and I loved it more than any activity. I was never good at sports and when I tried skiing, it came naturally to me and I picked it up quickly. I just LOVED to ski!

Even when I got IC, for a time I was able to continue to walk as long as there was a restroom along the way where I could stop and pee. But over time, as my IC worsened and Disability became my new reality, I couldn't even manage that.

So, it has been very frustrating. I watch my amazing 82 year old mother doing her Yoga, Pilates and weights every day and feel like a slug. I think, if she can do it, why can't I? She needs knee replacement and yet there she is doing her exercises every single day. I know healthy people half her age who can't do what she does. In the good weather, she hops on her bicycle and rides almost every day. She is my inspiration.

I'm now starting to have knee problems which are really acting up even more than ever. Probably arthritis, but just one more thing to deal with.

Well, I'm sick of feeling like a slug. I don't expect to be able to do what I used to. But I can adapt and at least keep myself loose, limber and moving. So today, I asked my Mom to show me some exercises I can do with my arms while sitting in a chair using her 2 pound weights. Nothing should hurt and nothing that requires pelvic floor muscles, but using the weights with my arms to regain some flexibility, strength and just keep my body and everything from falling apart. So, I'm going to work on doing this more regularly. It's a step. I can't do much right now, but I don't care. I'm going to do what I can do and see how it goes. The point is just to keep my body moving.

I'm also going to try to use the treadmill (while it's still winter) and do some walking. I plan to start slow and easy and if I have to get off after 10 minutes to go pee, I will. I'm not looking to do an hour on the treadmill like I used to. But, research has shown that even 10 minutes of exercise a day can increase your life expectancy. So, again, I want to keep moving. I will do what I can do. I have to wait for my left knee to stop hurting, but this is my plan. 

It has always bothered me that I am so inactive since IC. Well, I can do something about that. I just had to problem solve and find ways that I can get moving but within my new limitations. I don't have to just give up and do nothing. It's not about running another marathon or 10K (like I did before IC).  I know I'll never ski again and I will always miss that. But I can do some things that are good for my body and that will keep me limber, flexible and healthier.

Now, it's just about the fact that I "Gotta Keep Moving!" 

Me in Better Days on the Slopes!

GETTING BACK UP!

This has been on my mind lately. I know I have been struggling even more than usual with my IC and fighting to keep seeking answers and not allowing it to take me down. I have been working with my psychologist more on coping techniques because I've been struggling more. I have learned to recognize when I'm feeling like things are getting the better of me as a result of being in therapy. So when I notice that I am experiencing an increase in mood swings, crying and so on, I know it's time to see my therapist more often.

I know I've posted about this several times lately, but I've noticed others seem to be battling emotional struggles that go along with being a chronic pain/illness patient. First, you should not feel bad about feeling bad. We have IC and all that goes along with that and it's not easy. But I love this quote about continuing to fight to get back up when we feel we've been knocked down. That's how I feel about being an IC patient. 

Having IC is a roller coaster of good days, bad days and everything in between. One thing I've worked very hard on in therapy is not to let the good days get me overly happy and excited. I believe I have learned through experience that if I get too excited and then suddenly I'm hit with a bad day or a relapse, it's a huge fall down mentally. So, my goal is to take every day one at a time as it comes. If it's a good day, fine. Be thankful, of course, and just keep on going. If it's a bad day, I also try not to sink into sadness and depression. I have IC so I know there will be "bad" days and I should expect them. When they happen, I do whatever I can to take care of myself on those bad days and just get through it. Or as the quote says, to fight more intensely when I am struggling. 

The point is to never give up, keep getting up and fighting even when you get knocked down by your IC. If you feel "stuck" in sadness, anger, tears and depression; get help. It IS possible to learn to COPE with all that having IC means in our lives.

So, even if you are knocked down, get back up. Always get back up! Never stop fighting through the struggles and you may just find that you are stronger than you think you are!

WORRYING IS STUPID!

Here's another quote that a friend of mine shared on her Facebook wall;

she is NOT an IC patient but has her own life struggles that she is

dealing with and this was something that she connected with. I feel the same way.

I share these quotes often because they strike a chord in me and feel that

I either respond to them in a positive way, or that they feel like it's

something that I do. I have always been a person that worries a lot and friends and

family always teased me that I needed to "back away from the cliff."

This is something I am working on in therapy too. It's not that we have to 

NEVER have concerns or things to think about dealing with,

but over-worrying doesn't get us anywhere and, as the

saying goes, is stupid. I know that's strong language, but

the point is it's unnecessary and a waste of time. So often,

we are worrying about things over which we have no

control and it's not healthy. It's been proven that stress is bad

for our health in so many ways and worrying is stress.

So, I'm actually headed off to see my psychologist

today and once again, issues like this will be on the agenda.

The take away from this, for me, is to try to focus on what

we need to do to take care of ourselves, do the best we can

to insure we are following our treatment and diet plans,

ask questions when we have them, but then work on

not spending so much time worrying so much. It's not going to

make things better and, in fact, can often make things worse.

Worrying is Stupid!

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!

This really resonated with me and is something I try to work on every day.

I work on this with my therapist and it is a technique worth trying

when you are struggling. We often find ourselves chatastrophizing instead

of focusing on the good things in our lives. This is not to say our struggles

don't exist, but when you need help dealing with those struggles and

challenges, focusing on what we have to be grateful for can really

make a big difference!

"LOOKING" FINE!

Sometimes we all just need a little support and

encouragement from our friends and family. 

Don't be afraid to ask for it if you need it!

TAKIN' IT EASY!

Today I am feeling tired and worn out from all I did yesterday. I also had to go out today to get my car emissions certified (Mom went with me of course). So I am curled up in my comfy chair, with my heating pad and comfy blanket and just kicking back and resting for the day, so this post too will be brief.

I think one of the important things we can learn is to listen to our bodies and if we do have a good day where we feel up to doing some things, if we are feeling worn out or our bodies are "talking back" to us the next day, that we should accept that and give ourselves permission to just take it easy and rest and do whatever we need to in order to help feel better.

I keep falling asleep for short periods of time, and that seems to be what I need today. I am going to listen to my body and do what it is telling me and that is to rest up and just take it easy.

Give yourself permission to take it easy if that's what you need to do. Don't beat yourself up if you can't get some chores done that you may have planned. We need to be flexible and adjust our plans according to how we feel. 

So, yes, today is a "rest day" for me and that's OK. Today I'm takin' it easy! 

TODAY I'M HAPPY!

YAY! IT'S SUPPORT GROUP NIGHT!

I am actually excited that my local Support Group is meeting tonight after taking some time off during the holidays and early winter months! I miss the wonderful people in my group who are a real inspiration to me and, I believe, to each other. I always come away from our meetings feeling supported, encouraged and better than when I got there!

I hope we get a good turnout tonight and that people are feeling well enough to attend. But whoever is able to make it, will make the time together worthwhile and helpful. I'm also looking forward to seeing my Group Leader, as she is a constant source of support, friendship and help to me and our group. 

So, I am really happy it's Support Group night! Looking forward to seeing all my IC friends and catching up and helping each other with our mutual challenges!

If you don't belong to a Support Group, I strongly suggest you look for one in your area or even start one. They are SO worthwhile!

YAY! It's Support Group night!!

SUNDAY'S INSPIRATIONAL QUOTE & MUSIC VIDEO OF THE DAY!

"You Have Two Hands: One to Help Yourself, the Second to Help Others"

I just love this song and felt it to be a perfect accompaniment to today's 
Inspirational Quote:

"Bridge Over Troubled Waters"
- Simon & Garfunkel

UTI UPDATE!

An Update on my struggle with UTI's.

(Click on the bottom right corner for full screen.)

WIN!

I love this song and it's message. It's inspirational and the message is about never giving up; we may still fall and hit bumps in the road, but it's about getting back up and keep going on. I feel this is the story of IC patients. We want to never give up and work hard at it, and while we aren't always successful and have our struggles, we should always try!

So, enjoy the video and while listening to it, think about Never Giving Up!

ATTITUDE IS EVERYTHING!

This is something I am working on every single day. I talk about it with my psychologist and how learning coping techniques can and do impact my attitude and, therefore, my emotional state and how I manage living with my IC.

I just had an appointment with my psychologist yesterday and this was the main topic of our discussion.  How I've struggled a lot with coping and not having the attitude I would like. I am going to continue to work on this. I truly believe that the way I THINK and FEEL about my IC have a direct impact on how I feel. When I am down, I need to do the things that help me feel better and make me happy. Things like meditation, listening to music I like help change my mood completely. So I need to do more of this when the stress is rearing its ugly head. Putting my head phones on and listening to my favorite music has literally helped me go from near tears to being in a much better mood. We all have to find the things that work for us, but try whatever you think will work for you. Talk to a therapist, take a meditation class, yoga. These things can change how you cope and that's never a bad thing.

I can't do anything about having IC, but I can choose how I deal with it. It's not easy, but it's worth the effort. 

I love this quote and have always been inspired by Scott Hamilton who has fought brain cancer, testicular cancer and has the most positive attitude I've ever seen. He is truly an inspiration.

DOING THINGS WE THINK WE CAN'T!

As we all know, yesterday was Super Bowl Sunday, which of course is generally reason for having a Super Bowl Party! My family is no exception. Though very small, we usually get together to watch the game and enjoy some munchies, relax and watch the game. Even since getting IC, we've shared these get-togethers, but they have mostly been at my parent's house where I live.

This year, my younger brother and his wife, who live within walking distance of our house, wanted us to come over and enjoy the game at their house. Immediately, I told my Mom "No"; that I wasn't going to go. Based on how I've been feeling, I didn't think I could be comfortable and relax and enjoy the evening. I was flat out not going to go and managed to get myself all worked up about it and how frustrating it is that I can't just do whatever I want without it being a big deal. I hate putting people out, having them have to go to extra lengths to insure my comfort and just dealing with everything that goes along with "going out" of our comfort zone. I'm sure a lot of you can understand that.

Well, my wonderful family didn't let my refusal and distress deter them. My wonderful Mother talked to me about my issues and allowed me to express why I didn't want to go, but offered suggestions about how we could make it work. My fabulous brother and sister-in-law went out of their way to tell me I would be comfortable and not to worry about "putting them out" in any way.

I felt so supported and appreciated it more than words can say. So, I decided that I would do what I thought I couldn't. I chose to give it a try. Everyone understood that if I felt I had to leave and go home at any point in the evening, that would be just fine. It was one of the best things I've chosen to do!

My brother and sister-in-law put me in the most comfortable recliner chair, got me blankets to keep me warm and made sure I didn't have to get up and down to fill my plate with all the tasty munchies set out for us to enjoy. I made it through the entire game and had a wonderful time with my family.

Did I have to get up a bunch of times to go to the bathroom? Yes. Did I let it bother me? No.  I just did what I had to do and didn't let it take anything away from the nice time I was having.

I have my wonderful and supportive family to thank for "nudging" me along in just the right way and I am so glad that I did what I thought I couldn't. I need to do that more often and hopefully this will remind me that I can do things that I sometimes think I can't. I think we all can. If you approach it with the right attitude, some planning and love and support, we may just find that we CAN do things we think we can't!

To my wonderful family that encourage me every single day!

SUNDAY'S INSPIRATIONAL QUOTE OF THE DAY!

"The greatest test of courage on earth is to bear defeat without losing heart."

BONKED ON THE HEAD VIDEO!

I hope you all enjoy this little video I've prepared!

http://www.youtube.com/watch?v=KqbZ1X5sExc

NEVER GIVING UP!

We all talk about how challenging it is for many of us as we struggle with our symptoms and finding the right treatment(s) options to help us. One of the things that I have struggled with is this never giving up attitude. I have felt frustrated, angry and emotional and felt that nothing is working and have often felt like just plain giving up. But one of the things that really was another "ah ha" moment was my appointment with my doctor yesterday. 

My doctor never gives up!

I am so grateful to have a doctor that has NEVER given up on me, when I know that others would have long ago. My IC issues alone are complex and difficult to treat, but these chronic UTI's I've been dealing with for the last 3 years has frustrated both me and my doctor. Although he was the first to admit that he knows all too well that his frustration is not comparable to mine.

We had a long talk yesterday about my situation with the UTI's and through my tears, I told him I understood that medicine doesn't always have an answer but that I had a hard time accepting that there was NOTHING we could do to help me get rid of these UTI's. He gave me a hug and said he was not giving up; that he would keep researching, talking to other doctors and doing everything he could to help me. 

There's something to be learned from a doctor who has that attitude. If my doctor won't give up, then how can I? I must keep following his recommendations, be vigilant and never give up. 

So, I have to keep self-catheterizing and be vigilant. I must keep my bladder as empty as possible as much as possible, since my retention is a leading cause of infections. I am using the vaginal estrogen cream, which also helps with preventing infections (in addition to helping with my vaginal/vulvar atrophy) and I have a catheter that I really like that is supposed to help with preventing infection. Here's a link to a little video about this catheter. I love them!

http://www.youtube.com/watch?v=jPzkzawCcJk

Well, my doctor really proved he was REALLY listening to me yesterday, which is so important. This morning my phone rings and it's my doctor's nurse. He wants to prescribe a medication for me to take prophylactically every day, twice a day for 90 days. This drug belongs to the family of medicines called anti-infectives. It is used to help prevent infections of the urinary tract. While dosing is always up to the physician based on the patient's situation, often the dose is 1 milligram. However, my doctor has prescribed 1 GRAM twice a day for 90 days! That's a huge increase in dosing over what might normally be prescribed, but I am excited that he wants to really get aggressive and attack this. I like this idea and I am on board. 

The most impressive thing to me is that after my doctor walked out of the exam room, he was obviously thinking about me and my problem. We often wonder if we're just forgotten the minute they walk out the door. My doctor kept thinking about my situation, clearly did what he said he would and not in two weeks, but right away.

He never gives up on me and this is something that I am so grateful for. But it has taught me that I too must never give up on myself or in fighting to find ways to help myself. I think this is something we all could work on. Keep working with your doctor, keep trying everything, keep an open mind and NEVER GIVE UP! 

I don't know if this will work or not. But I am pleased to have a new option to try and I am really excited to give it my best shot.

So here's to hope and NEVER GIVING UP!

JUST RESTIN'!

Today I am taking it easy and just restin' (Monty Python fans will understand that reference). I have an appointment tomorrow with my IC doctor and it's time to evaluate and discuss my situation. We've been doing a series of instillations with Gentamicin to see if that would help with the UTI's, I've been using antibiotic coated catheters for the same reason. Nothing has helped and I've already had 2 UTI's back to back (less than 36 hours from the finish of one antibiotic to symptoms returning of another). I had 17 UTI's last year and this year is not off to a good start at all!

I just finished taking my last dose of Macrobid last Thursday (only 4 days ago) and I knew yesterday morning the symptoms of another UTI are rearing their ugly head. It is so frustrating and I know we have tried every single thing there is to try but nothing is helping.

I am tired today and knowing that I have to go out tomorrow, I am really taking it easy, curled up with my heating pad and blankie. It's nasty outside though not as cold, but gray and dank and gloomy. That never helps one's mood.

So I am working on taking my own advice and doing things that make me happy; music, talking with friends and I had a nice little nap too. So, if you're having one of those days, do what you need to in order to get through it. Take care of yourself and don't feel guilty about it! And if anyone asks why you're just laying on the couch, just tell them "I'm just restin'!"

SUNDAY'S INSPIRATIONAL QUOTE FOR THE DAY!