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Sunday, June 30, 2013


Proverbs 23:7 "For as he thinketh in his heart, so is he"..

This past week will be in my mind as one of the hardest weeks I have had lately. I needed to go to work each day at 9:00 and stay until 5:00. Doesn't seem like such a difficult task does it? But if you have Interstitial Cystits (IC) and insomnia, combined with pelvic floor dysfunction (pfd), vulvodynia (vv), blended with Irritable Bowel Syndrome (IBS) and Fibromyalgia (fibro) and topped off with Chronic Fatigue (tiredness beyond your imagination), you might see it as a challenge as I did.

My pain level was high by lunchtime on Monday, so I took a pain reliever. By 4:00, I was lightheaded and nauseated. By 5:30, I decided I needed to go home. It was difficult to drive because I was so dizzy. I ate a few crackers and only a few bites of supper. I was still extremely nauseated and exhausted.
My daughter, Miranda and her fiance came by the house to pick up her dog. They had good news to tell us! They have set a date for their wedding! I wanted to discuss the plans she had, but I was so weak I could barely function.

I was so frustrated that IC robbed me of so much of my energy that I could not share in their joy. I had used all my energy earlier that day just trying to be “normal.” Normal as in working a full day, normal as in talking to my co-workers, normal as in spending time with my family and not going to bed.

As a mother, I have looked forward to the day when my daughter was going to tell me she was planning her wedding. But I didn't have enough energy to express my happiness, I barely had enough to speak at all.

By the time I tried to go to sleep that night, I was a hot mess. I was tense all over my body. My back hurt. I had sore achy muscles in my shoulders and back and from my thighs all the way down to my feet. My stomach was swollen and I had vaginal burning. There wasn't a part of my body that didn't hurt, but especially my heart.

I was heartbroken that on a day that I should be so happy, IC and other related conditions made me miserable. As I closed my eyes to sleep, my head started spinning from the nausea. Boy, did I feel sorry for me! I cried myself to sleep.

My week continued to be a series of nights that I would sleep for a few hours and then wake up and not be able to fall back asleep for a couple of hours. Then I would wake up dead tired, go to work, experience a lot of pain, eat supper and then try to fall asleep again, crying myself to sleep. I repeated the cycle day after day. I was in a dark place with my thoughts and I couldn't seem to find my way out.

We have all had similar experiences like this. As I started writing this post, I had no idea what message I was supposed to learn or how my experience of depression and darkness was supposed to be encouraging to you...

If I don't feel well enough to go to church on Sunday morning, I usually watch “In Touch with Charles Stanley” on TV. However, when I turned it on today, he was not preaching. There was a soldier that served in Afghanistan talking. He said that all of us have experienced loss. It may be the loss of a loved one, a job or income.

I think with IC patients, it may be the loss of full use of your body, loss of energy, loss of the life you had before or loss of freedom in our daily lives that so many people take for granted. (Feel free to insert your own loss or struggle here.)

He said we need to listen to the message that is being taught through our loss. We need to embrace the heartache or pain and use it as an ally to further God's plan. He said staying in the pain becomes our handicap, if we let it...ouch, did somebody just step on my toes?!!?

He said that God takes away things in our life, so we depend on Him. We learn to depend on God's strength, listen to Him speak to us daily and that is where true freedom comes from in our lives.
So if a soldier, who lost both of his legs fighting for our freedom, can see that God is using him through his loss, then I think we owe it to God to seek out freedom in our loss, whatever our own personal loss may be!

I will provide a link to the soldier's story.  If you are unable to watch all of the video, at least watch his story about 20 minutes into the video.  I think your heart will be blessed!!

Share with me some similar story you have or your thoughts about his story below:

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Sunday, June 16, 2013

My Bucket List

I have made a mental bucket list for myself.  No, I'm not dying (that I know of), but it is more like a list of things I want to do in the near future.  A list of things that I should have already done, but keep putting off or just don't take the time to do.

I have some vacation time to use at work, so I want to take a day here and there to accomplish my list.  I was able to do just that this week.  I told my husband that I wanted to take a day off and spend it with my daughter.  I had thought of a couple of things we could do that I thought she would enjoy.  However, he came up with a better idea.  He suggested we do a day trip to the beach!  Did somebody say "beach?"  I love the beach and so does she.  That is an excellent idea!

I talked to my daughter about it and she sounded excited too!  I wasn't sure she would want to spend the whole day hanging out with me, but she did!  I was looking forward to it, but I also had a fear that my Interstitial Cystitis (IC) would take over the day and ruin it for me.  I hoped for the best and we decided on a day when she was already off from work.

We planned to leave the house early.  She was going to be at my house at 8:00 a.m....Hey, 8:00 a.m. is early for me!  I woke up at 6:30, but I was moving slowly.  I didn't have as much sleep as I needed, so I was a little tired.  Now that I have IC and fibromyalgia, etc., etc.  I need at least 9 hours of good sleep to feel rested.

We packed the car and headed for the beach.  On the way, I told her that I meant to get an oil change before our trip.  We both decided to stop at the closet town and go ahead and have the oil changed.  It is better to be safe that sorry.  My daughter, Miranda, seemed so logical about it too.  She is only 23, but sometimes she amazes me.

We stopped and had the oil changed.  It was at a Tire and Oil Center.  It was not a "Jiffy Lube."  As a matter of fact, there was nothing "jiffy" about it.  It took about 45 minutes.  It seemed like forever to two people with nothing but sand and waves on their mind. It was time well spent, just to be safe though.

We hopped back in the car and headed to the ocean.  As Miranda was on the exit ramp approaching the interstate, she said this would be her second time driving on an interstate.  What??!! That made me anxious! But she did just fine.  We found our way and didn't even get lost.  Pretty good I thought, for the two of us.  I am terrible with directions.  Of course, I had recently been there and had the Garmin (Judy) too, but none the less, I was proud that we drove straight to it.   

We sat out on the beach and mostly just talked.  It was like two friends, sitting on the beach, enjoying each others' company.  I was having such a good day, my IC was not bothering me much at all.  At one point, I closed my eyes and began to pray.  It was a long continuous praise prayer that brought tears to my eyes..I felt so close to God at that moment. "My cup overflows!"

We walked along the seashore.  I have to say that is one of my most favorite things in the world to do. Walking, talking, exercising and enjoying the sun!  After a couple of hours, we decided to pack our things and go back home.  I told her that I think I could stay out on the beach all day long.  I'm always a little sad when it is time to go.  I guess that is because when I was a little girl my grandparents lived at the beach.  We would go and visit them each year. Ah, good memories!

We headed toward the bridge.  At first there were no problems and then out of no where traffic comes to a dead stop.  We came close to hitting the car in front of us, because Miranda had to slam on brakes.  Thankfully we survived, but there must have been a wreck ahead of us.  We decided to turn around and go back to the island. First of all to use the Ladies' room and I changed out of my swimsuit.  I didn't want to relive what happened to me a few weeks ago. See blog post "How A Kangaroo Saved Me"

After that, we went up the bridge again. The traffic was moving slowly.  It took about 30 extra minutes to drive across the bridge.  We passed the wreck.  It looked like about 4 cars had piled into each other, but no major injuries.

We had to go across another much larger bridge, across the Cooper River.  There was a large amount of traffic and it was stop and go.  Miranda was a little nervous.  She said "We are so high up."  I said "That just means we are closer to God."  I continued to say calming words to her.  Normally I would have been the anxious one, but I had already taken something to calm me down.

We stopped down the road in a small town and filled up the gas tank.  That is where I decided to lay in the back sit.  My bladder and stomach were hurting, so I took a pain reliever.  I stayed back there to rest on the way home.  My daughter did all of the driving.  She did a great job!

I am so thankful that we were able to make this trip together.  It has been years, since she and I have spent so much alone time together.  I will treasure that day forever!

I think it is a good idea for all IC patients and anyone else to set small, realistic goals for yourself continually.  It gives you something to work toward and anticipate.

I recently read an article about a lady that saved for a new, expensive pocketbook.  She started doing her own nails and saved the money that was already budgeted for manicures.  Instead of her usual hair cut and styling, she settled for a no-frills trim.  She put her saved money in an online savings account, so that taking any out would not be easy.  She taped a picture of the bag on her computer.  After six months, she ordered her new pocketbook.  I thought this was an excellent way to save for something that you want.  She could have charged it on a credit card, but I think waiting made it even more enjoyable for her.

Of course you may not want a new pocketbook, so insert your own realistic goal.  The point is to have your mind looking forward to something instead of focusing on the pain or misery of what you may be going through now.

Miranda going to the beach
Flowers along the path

We made a new friend

Some additional tips for IC Patients:
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Sunday, June 9, 2013

How A Kangaroo Saved Me

A couple of weeks ago Alan and I went to Charleston SC. During our trip, we decided to visit the Isle of Palms, SC.  We have been there before and enjoy the small beach community. 

We left the hotel about 10:00 a.m., but we had to make a few stops before going out on the beach.  We needed a new beach umbrella and a book for Alan.  After we made our purchases, we decided to eat lunch.

Then we headed to the small beach island.  It was very crowded because it was a holiday weekend.  Parking along the road, in front of the beach houses, was limited. We finally found a good spot.  It was close to public beach access, so that was even better.

I love the ocean.  I love the relaxing sound of the crashing waves.  I enjoy the warm sand beneath my feet and I especially enjoy the warmth of the sun.  This day was a little cool for me.  It was the earliest time of the year we have ever been on the beach.  I had cold chills periodically.  Yes, cold chills.  There just shouldn't be cold chills while you are on the beach in my opinion!! We walked down the shoreline for exercise.  I even walked in the shallow water for a very few minutes.  That water was cold!! brrr!!

We stayed out on the beautiful, albeit somewhat crowed beach for about 2 hours.  One reason we like this beach so much, is because it is usually not that crowded.

When we were trying to leave the island at about 4:30, apparently many other people were trying to do the same thing.  I was lying down in the back seat because my bladder, legs and bottom were in pain from sitting too long in the car and then sitting on the beach. 

I realized that I had not drank much water, while we were on the beach, so I started drinking a good bit. The line we were in to go to the bridge to leave the island was at a stand still.  Traffic was backed up for miles.  It wasn't a problem for me at first.  I was resting, listening to music and drinking water.  Alan said there must be a wreck on the bridge. After about an hour or so, he decided to follow some other cars to an additional bridge that leads off of the island.  What were the odds that there would be a problem on that bridge too?

We drove behind the other cars, only to file into another long line of cars.  The odds must have been pretty good that day for another wreck, on the other bridge.  After almost finishing most of my water,  I realized I needed the go to the restroom.  By this time, my bladder was hurting even more.  I checked the Garmin (we call ours Judy...get it Judy Garmin??) for the nearest gas station.  It was only 2.5 miles away.  At the rate we were going, we could be there in only about 30 minutes.  I tried to occupy my mind, with the tops of the houses that I could see, making comments about each one we passed by.  In contract to my tactics to try to keep myself calm, firetrucks and other emergency responders were flying by our car and the sirens were loud and scary.  By this point, Alan had cut off the car and let the windows down, but the noise was not helping me.

The line of cars slowly approached a stop sign.  To the left I could see the gas station.  It looked like it might not be open.  We would have to go against the traffic and turn left, but what if it were not open??!!  I looked to the right and saw the bridge!  I said to myself, I've got this!  I said go ahead and turn right the traffic is moving now.  I knew that just across the bridge were many gas stations that I knew would be open.

We were just about to turn right, when a guy and a girl on a motorcycle cut in front of us.  So now I had unbelievable bladder pain, the smell and noise of a motorcycle and again the loud sound of the emergency responders zooming by me.  My hyper-sensitive senses were in overdrive.

We made it half way up the bridge only to come to a complete stop again.  I began to ponder in my mind.  What did we have in the car that was big enough for me to relieve myself in?  There was a cup...maybe it could do the job.  I was gathering up my nerve, but I looked behind me and there was a car with a lady in it, looking right at me.  I have a big beach towel to cover up with and I am a desperate woman, I've got this!

I lost my nerve and was concerned that the cup was not big enough anyway.  I laid back down and began to pray.  Not only for me, but for all the people that were in those wreaks.  I knew that some of them may have been hurt seriously.

My body and mind were frantic.  I told Alan to just stop at the next store, restaurant or whatever.  I was at point where I didn't care.  He said it would be just over the bridge.  I knew I could trust him and his words kept me focused.  To add to all my anxiety, we were going over a drawbridge.  I have a fear of going over bridges, especially drawbridges when I am in a great deal of pain. The fumes from the motorcycle and the noise and the pain were almost just too much!

I stayed focused on his words and then I saw the top of the drawbridge.  I knew I could make it!  A few minutes later we stopped at a Kangaroo convenience store.  I jumped out of the car.  I had already put on my hat and sunglasses, so that I could be incognito. I made a beeline for the ladies' restroom.  I glanced across the store and saw another female headed in the same direction.  Thankfully she stopped at the fountain drinks, so I didn't have to knock her out of my way,lol.  I am also thankful for that Kangaroo!

It hurt so much when I finally did go that I knew that all of it would not come out.  As soon as I reached the car, the tears fell like rain.  Interstitial Cystitis (IC) had made those 3 hours (yes, 3 hours!!) that I was trapped in my own car miserable for me.  After that, I didn't want to go out to eat or anything.  I just wanted to lay down with two of my favorite companions, my heating pad and my other heating pad.

I really had to question myself and God on this one.  Why did this happen?  What good could come from it?  I should have known to go to the restroom sooner.  I should not have drank so much water in stand still traffic.  I have been trying to figure this one out for some time.  I even considered not posting anything about it, thinking it would be too embarrassing.

But I also know that as a child of God, he guides me in every step.  Good times, bad times, there is no circumstance that can come to us, apart from God’s determined purpose for our lives. So I wanted to share it with you.  I should not be embarrassed by this.  Things like this really do happen.  If we share them with one another maybe we can learn from each other. The "fall" that you are going through may be a broken marriage, the loss of a job, health problems or any sort of personal crisis.  Even if we face life changing circumstances, God will not allow us to be destroyed. Nothing can happen that will sever our relationship with Him.

Being strong when we face life's difficult situations can be managed better when we trust God (Oh, there it is again TRUST GOD, see blog post entitled "Trust Him"  God is our rock and from him we receive peace. 

I hope that I learned my lesson that day.  I should always go to the restroom before I leave on a trip, no matter how short I think the trip will be.  And if you have IC like me, I hope you will do the same.  I also found this information on some travel aids  These would be convenient for when life sneaks up on you and you need a little help.  We can also take great comfort in the fact that God is with us even when we are on a drawbridge, behind a loud motorcycle in complete misery, trapped in own car!!

Feel free to share with me your similar experiences or comments below!

Some additional tips for IC Patients:
To learn more about Interstitial Cystitis:

You can follow me on Twitter:

You can follow me on Pinterest:

You can email me:

Sunday, June 2, 2013

Trust Him

It started out as a good day. I worked from home half of the day and then went into the office to work. I remember talking with a co-worker and suddenly feeling nauseated. I took a Zophran and just kept going. My daughter called and we talked a few minutes. When I hung up the phone, based on the look on my face, my co-worker said “That must have been a bad conversation.” I said “No, I just feel extremely tired all of the sudden!”

Shortly after, it was time to go home and I still felt nauseated and tired. My daughter, Miranda and her boyfriend came to the house and we talked a while. When they left I could feel the life of me leaving and IC taking over my body.

My bladder was burning and hurting. My stomach swelled and had a lot of pressure. My vaginal burning increased tremendously as did my frequent urination. I had no energy and felt very weak. My head was spinning and I feel dizzy.

I watched TV with my husband. I wanted to enjoy his company, trying to hold on to as much normalcy as possible. He cooked supper, but I ate very little. It wasn't much later when I decided to go ahead to bed and try to sleep. I still felt nauseated and the tears started to flow. I feel Interstitial Cystitis (IC) winning the battle and consuming my thoughts.

I was trying to figure out what I had done or ate that was wrong. What was different in my life today? What could I have done to cause this? Why, why, why??!! But I also know that IC can take over no matter what you do or what you eat or what you take...IC won the battle.

I have mixed feelings about this flare (sudden increased intensity of IC symptoms). The good news is I haven't had one since January. The bad news is that I thought the new medication (Elmiron) I am on was going to prevent flares for much longer than it did. I'm happy that I went 4 months without a flare because I was having one about every 6 weeks. But I also feel like IC is winning the war.

I told a friend of mine to pray for me. His response was “Trust Him.”  I felt so much peace from just hearing those two words. “Trust Him.”

I simply want you and me to read the above verses, meditate over them, pray about them and apply them to our lives.  Whether we are going through good times or bad, we need to depend on Him...Trust Him!!!

This song is about life not going the way that you planned.  But that God promises us, He will never leave us or forsake us.  

Kutless "Even If"

To learn more about Interstitial Cystitis:

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