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Monday, December 31, 2012

2012 A Year To Remember

Ah, a new year. A time for fresh starts and a time to look back at this wonderful year, right? Huh??!! What fantasy world are you living in? Where have you been all year??

This year has not been perfect, but then again it will never be perfect in this world.  This is the year I will always remember as the year I was diagnosed with Interstitial Cystits (IC).  As I reflect back on this year, there have been a lot of hard times, but there have been more good times than bad and many good things that have been instilled (no pun intended) in me because I have IC.

Since I have had IC, I have learned not to judge others as much.  You just never know the whole story until you personally know that person or have been through something  similar yourself.  And then again every person is different, so it is better just not to judge at all.

I have also learned empathy. I try to put myself  in the same position as the other person. I can relate to chronic pain. I can relate to depression and fatigue.  I can relate to others who are suffering too.

I hope to help others through the experiences of my journey.  I hope that one day with my help and the help from others, that if you are diagnosed with IC that you don't feel hopeless.  I hope that you don't feel alone and helpless.  It is not a good feeling and no one should have to go through this alone.

I hope that if you have been trying treatments and they are not working that you will keep trying.  Don't ever give up hope that one day you will find exactly what you have been looking for in relief.  It's not easy to keep trying scary, new things.  It's not easy to keep going to the doctor so much.  The burden of the expenses is not easy, but we have to keep trying.  If you want to find some people who are not quitters, then all you need to do is meet someone with IC.

I have learned that if there is a subject you want to know and understand, such as IC.  Then you need to do research for yourself from a reliable source. Read about others who are going through some of the same things or ask questions to someone who may have the knowledge you need.

I have learned that doctors don't know everything.  IC and pain are so complex that they try to suggest what they think is best, but it is your body. You need to decide what is best for you. Also, it may take several different doctors to make you feel like a "normal" person.  I am going to my Urogynecologist for rescue treatments and for his wisdom from many years of treating IC patients.  I am going to my Urologist for his desire to treat the cause and not just the symptoms.  I am going to my physical therapist for insight on nutrition, relaxation and exercises that I can do on my own.

My whole life has changed, but who is to say that it is not for the better.  I certainly feel closer to God.  I have more time to spend with my family. I have also met some amazing people on different support sites. I would have never known these people if not for IC. Some of these people have been great sources of inspiration and motivation to me.

In my life, I have learned that the people that matter most to me are still there for me.  These people are the ones that ask "How do you feel?" and really mean it.  I think we should thank God every day for our loved ones and for what  He  has done in our lives. 

Yes, my life has changed, but it could be worse.  I still have my faith. I still have the love and support of my loved ones and I still can encourage others.

I look forward to the new year.  I look forward to meeting new people.  I look forward to getting closer to God. I look forward to helping others.

I do not have any new year's resolutions only goals that I have set for myself.  But hey, if resolutions work best for you, then that is what you should do.

I pray for guidance and direction for the new year.  I pray for lost souls, healing hearts and comfort for those who are sad or weary. I pray that each of you will never give up hope for healing and never give up on your dreams.

               Jeremiah 29:11
"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope."
As my friend said to me, "You are gonna rock in 2013!"

Let me know your thoughts and plans for the new year by leaving your comments below.

twitter: @bb65ichope

Happy New Year!!!

Sunday, December 16, 2012

Unconditional Love

For as long as I can remember, my family had read Luke 2:1-20 on Christmas Day.  Honestly, when I was younger, it was sort of embarrassing.  After all, I thought, Christmas was about the presents, right?  Now that I am older, I look forward to the reading because I now know it represents God's unconditional love for us all.
"In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. 2 This was the first census that took place while[a] Quirinius was governor of Syria. And everyone went to their own town to register.
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them" Luke 2:1-7
We often judge people by the environment that they grew up in.  What neighborhood they came from or where they went to school.  If we look at the beginning of the life of the creator of the world's Son, it seemed insignificant, but it turned out to be the most significant thing that has ever happened on earth. It happened in a barn stable on that first Christmas night. 

God used Mary and Joseph,ordinary people, just like you and me to carry out the birth of His Son. Ordinary people doing extraordinary things. God wants all of us to do extraordinary things for Him.

8 "And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. 10 But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. 11 Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. 12 This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”
13 Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
14 “Glory to God in the highest heaven,
    and on earth peace to those on whom his favor rests.”
15 When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.”
16 So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. 17 When they had seen him, they spread the word concerning what had been told them about this child, 18 and all who heard it were amazed at what the shepherds said to them. 19 But Mary treasured up all these things and pondered them in her heart. 20 The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told." Luke 2:8-20

God sometimes gives His greatest understanding to ordinary people.  The shepherds were the first to hear about the birth of Jesus. They were ordinary people, but they chose to listen and  believe what they heard from God. The first thing they did afterwards was to go and tell other people.  We all should have that same kind of passion and tell others about Jesus and His love for us.

In the classic Peanuts Christmas story, Charlie Brown learns that Christmas is all about love.  Linus tells of the greatest love story ever told.  He speaks of God sending His Son to earth and being born on Christmas day.  Linus declares that the tree only needs some love. Unconditional love, that is what it is all about.  As Charlie Brown decides not to let all the presents, decorations and commercialism of Christmas ruin his Christmas, we should decide to do the same and remember the true meaning of Christmas...unconditional love.

God sent His Son to us on Christmas day.  He sent His Son to save us from our sins.  He sent His Son because He loves us no matter what we do.  He has unconditional love for us. I hope that we all remember this on Christmas day! 

Please share your thoughts or your
 special Christmas memories below.


Ordinary people doing extraordinary things

Sunday, December 9, 2012

IC Tired

Every year for the last 47 years it has been a cold, cloudy, dreary day on December 5th.  Or should I say it has been for the last 7 years since I turned 40?  When I look outside all I see is depressing!!  How do I know this? It is my birth date.  I am one of those overly sensitive people when it comes to my birthday.  I expect the loved ones in my life to make me feel special on this day.  To some people their birthday is just another day, not me I am sensitive to a fault. I am just a big baby about the whole thing.

I guess I could blame it on my husband who has spoiled me on my birthday over the years.  Gifts, flowers and limousine rides and such have my expectations pretty high.  This year I decided that I wanted to plan my birthday.  I just couldn’t stand the thought of going to work, like it was just another day and pretending to be happy.  

I planned a trip about 2 hours away to the mountains of North Carolina.  I booked a hotel in Asheville NC and picked a small, nearby town to do some shopping.  I chose Black Mountain NC.  I could not have picked a better place.  It was a small quaint town with lots of small,charming gift shops.

We began our shopping journey at an antique store.  I love to browse through antique stores and I haven't done it since I was diagnosed with Interstitial Cystitis (IC) in March.  I was able to find 2 very unique prayer cards and a book that we are going to give to one of my brothers for Christmas.  One of the prayer cards has a picture of Jesus and the other has a bible verse on the back.  They are both made of delicate paper and are made to look like lace.  I have never seen anything like them before.  They are truly a rare treasure.

We ate lunch at the Veranda Cafe.  If you are ever near Black Mountain, I highly recommend this cafe.  I had a chicken salad croissant with potato soup.  Both were very tasty.

After lunch, we did more shopping.  We went into one store that had hand crafted items from local artists.  I particularly liked the hard carved wooden tables and a picture with birds and pieces of decorative glass.  The picture caught my husband’s eye too and he commented on it.  After browsing the whole store and picking out a pair of earrings for myself.  I thought the picture would look great in our house because it was very colorful and my house is too.  I told my husband I thought we should buy it.  I thought it was $37.00, he pointed out that is was $376.00.  We both got a good laugh from that and purchased just the earrings :)

After we shopped for about 2 hours or more.  My husband said to pick one last place and I picked a great little gift shop.  It was filled with gems from local artists.  I found a gift for my daughter…I can’t go into detail she might be reading…Santa’s little secret!

I had taken a couple of pictures along the way, but I wanted more.  I asked Alan if we could stop at a scenic place along the way home and take more.  As it turned out we went to Chimney Rock, but the park to the scenic views was closed.  We did manage to take a couple of pictures near the park.  Those pictures mean so much to me, because Alan went way out of the way, just to make me happy on my birthday.

I was so tired on the way home; I didn’t have the energy to talk much.  I wasn’t just tired, I was IC tired.  Before IC, I just thought I knew what tired meant.  IC takes tired to a whole new level for me.  My whole body ached from my fingers to my toes and everything in between.  Before, when I would get tired I could get a good night’s sleep and feel much better the next day.  Now that I have IC I have to have at least a couple of nights with good sleep and lots of rest in between.

For me being that tired was worth it.  I spent my birthday with my husband, went shopping and have some good memories AND pictures to remind me of how much he does for me.

When you live with IC or any type of chronic pain, you have to decide how you are going to use your energy.  Spend it on what will benefit you and your family the most.  We have to pick and choose because our bodies are different now than they were before IC.

 This can be one of the most hectic times of the year.  We think we have to decorate, bake, shop and socialize more in the month of December than all the other months combined.  As IC patients we need to let some things go. If the tree isn’t perfect or the house isn’t spotless, what does it really matter? (I can’t believe I just typed those words...but IC changes you, what can I say?)   The things in life that matter most are our relationship with God, our families and our friends.  Use this time of year as a reminder of that and not get caught up in all the doing and running around.

I'll admit that I over did it and became very IC tired. I will, on the other hand. do most of my Christmas shopping online.  My tree is not perfect and my house is far from spotless and I am at peace with all of it.

 John 14:27 - #1 Bible Scripture for Inner Peace- Gift from Jesus
"I am leaving you with a gift-peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid.

Let me know how you are making changes in your life to survive the holidays  by leaving your comments below.
Prayer Card

2012-12-05 16.27.18.jpg
Barbara at Chimney Rock NC

2012-12-05 14.14.57.jpg
Alan at Black Mountain NC

Sunday, December 2, 2012

Purpose of Pain

I have always loved this time of year.  What could be better?  You spend more time with family and you get the joy of giving gifts to your loved ones. I also love the decorations. I used to have a fascination for Santa clause decorations and now I love snowmen.

I also love the Christmas tree. I love seeing the decorations each year. Some of these decorations hold fond memories. I look forward to putting up the tree every year. Well maybe not the actual putting up of the tree, but admiring the tree afterwards.

This year putting up the tree captured a new and not so fond memory…pain. I only sat on the floor for a about 10 minutes to straighten out the limbs at the bottom of our tree. You see, we bought an artificial pre-lit tree several years ago. Best money we ever spent!  Well that and the money spent on my hysterectomy! 

Afterwards I was in a lot of pain. My bladder was hurting. Bladder pain for me is a new symptom. Oh I’m excited, a new symptom to add to the long list. My legs and bottom were hurting too.  I was totally exhausted and I had done very little that day prior to my holiday decorating.  I was in so much pain and so weary, very shortly afterwards, I went to bed. I told my husband I was going to take Ibuprofen first and if I couldn’t get to sleep, I would take a stronger narcotic.  Much to my delight, I was able to fall asleep and slept well.

Before I feel asleep, I was praying. I was asking God to show me the reason or  the purpose of my pain.  I tried to listen for my answer, but it is very difficult to do when you are in so much pain.  I still don’t have any big revelation other than it is my purpose to suffer in order that I can relate to and try to help others.  I am fine with that most of the time. This was not one of those times, but it made me appreciate feeling good the next day.

Maybe that is the purpose of our pain…to help us learn to appreciate the good days, the good times and those that help take care of us. I am convinced that each person with chronic pain has to figure out their own purpose in their suffering.

I do think there are some things we can do to help ease the pain. I believe that diet, exercise and our attitude toward the pain can help control our pain. My physical therapist gave me a link to a video that I would like to share with you. It has helped me to think more about what I eat and drink. It has encouraged me to get back into the habit of walking daily. One of the main things I took away from the video was that I need to consider ways to reduce stress. Most of my stress comes from my job. If I am feeling stressed at work, I can go for a walk to decompress. If I eat healthier, I will feel more like walking. If I eat well, I will walk. If I walk I will be less stressful.  You see how one part of your life can affect so many other areas?

Another very important thing I have learned about dealing with pain is that if our mind is occupied with something else, we tend not to concentrate on the pain as much. Try to keep your mind occupied with a hobby, your job, a pet or something else that you enjoy.

Chronic pain can be very difficult to deal with every day. Instead of focusing on how difficult the pain is, try focusing on better ways to deal with it. Take an active role in treating your chronic pain and set realistic goals for yourself and hopefully we all can figure out our purpose of pain.

The video below is different from most of the videos I post.  Please check it out and leave your comments below.

2 Corinthians 12:9-10
"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Monday, November 26, 2012

My Own Little World

For the last several Thanksgivings, I have helped my Mama prepare the meal. She always does the majority of the cooking, but I would bring one dish and help prepare another dish. It is a tradition that I look forward to every year. This is such a special time that I spend with my Mama before anyone else arrives for our dinner. She always breaks out with the aprons that my great grandmother handmade and we both wear them. I love those little aprons.  I vaguely remember my great grandmother. I was 6 years old when she died.  I do fondly remember staying at her house and that she was a sweet and adorable person.

This year when I called my Mama to help plan Thanksgiving dinner, I asked her if she wanted me to come early and help and she said  "no." At first I was very heartbroken. After all these years, she didn't want me to help and share those special memories or make new ones??!!  I felt betrayed by my own Mother - what a feeling!  She said it would be too much for me to try to help cook this year. After much careful thought and consideration, I asked my daughter to take my place. She said that she didn't know how to cook. I said that is why you should go, so you can learn. I thought it would be a great time for my daughter to learn and spend some special time with her grandmother.

When Thanksgiving day arrived, I planned on sending my daughter a text a couple of hours before she was supposed to be there. You know, just in case she planned on ditching the whole idea. But my brother and his wife were spending a few days at my house and time slipped away from me. I sent the text at about the time she was supposed to be there. I was so proud when the reply text came back that she was already there!

Determined to help and enjoy some of this special time for myself I arrived early too.  I wanted to at least be there before everyone else arrived.  As it turned out my brother and his wire rode with me. By the time we showed up, my Mama and my daughter had everything ready.  All the food was cooked and the table was set. Again, I felt a little disappointed but at the same time, I felt immense pride.  Someone had taken my place, but it was my daughter and I was very grateful.

After the meal, I usually help clean the kitchen.  It has always been something that I enjoy doing. Helping my Mama clean up after she worked so hard preparing our meal just seemed liked the least I could do.  This year things were different. My daughter once again took my place and cleaned up after we all ate. I can hardly describe the joy that filled my heart.  I am able to do less now, but my young daughter stepped in like a responsible adult and took control of the situation.

At first, I think she was afraid. She was afraid that she would not know what to do.  How many times in our lives do we let fear hold us back from trying something new or helping someone out?  We are so afraid of getting out of our comfort zone, but there are people in need all around us.

As an IC patient, I am limited in what I can do, but that doesn't mean I can't do ANYTHING!  I can reach outside of my own little world to help comfort someone else in need. I can call someone who is sick or who just may be lonely. I can't cook a meal for a person in need, but I can buy them lunch.  I am unable to do much shopping, but I can go online and buy gifts for a needy family.  I can give one of the most precious gifts of all, my time.  I can send a Christmas card to a neighbor or friend. We all have different talents. Consider what yours are and use them to share joy with someone else.

Don't let fear hold you back from making a difference in the life of someone this holiday season.  If we share some of our talents, time or money we will have joy in return. I have been blessed with so much in my life, I always try to reach out to someone in need, especially this time of year. If you do not know someone in need, contact a school or church.  I'm sure they will be able to put you in touch with someone that has needs or just needs a friend.

"Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver." II Corinthians 9:7

Please leave your comments below.


Sunday, November 18, 2012


I started physical therapy on October 29th for Pelvic Floor Dysfunction (PFD).  PFD is usually related to the presence of too much tension in the pelvic floor muscles. Unexplained pain in the low back, pelvic region, genital area, or rectum  are some of the symptoms of PFD. The first visit consisted of answering questions and a physical examination. On the second visit she externally placed electrodes around the anus to measure whether I was able to effectively contract and relax pelvic floor muscles.  Let me guess what you are thinking; that was TMI and she gets to have all the fun!  But actually it has not been too bad, because my therapist is wonderful. On the second session she also performed Myofascial Release. Skin rolling or Myofascial Release is a highly specialized stretching technique used by therapists to treat patients with a variety of soft tissue problems. While she was doing the treatment she asked if I was ok and I said that I was not going to punch her, yet, but it did not feel great.  She was all over my "no touch zone."  She was rolling on my stomach and inner thighs.  I am surprised that she and I both survived without any harm or injury to either of us.  I am happy to report I have felt a huge relief  from the pain in my inner thighs and pelvic area for the last 2 days.

As she was performing the treatment, she asked me how my IC started.   I told her the story of how I thought it was a bladder infection and how I went through 3 rounds of antibiotics only to feel worse. My gynecologist was then suspicious of Interstital Cystitis (IC) and sent me to an IC specialist. The specialist diagnosed me, but did not have any compassion.  I then found my urogynecologist with the help of the ICA’s referral list. I told her that he understands IC and has compassion. I was starting to tear up. I said as an IC patient, I needed a doctor that was compassionate and I still need that today. Every time I go to a doctor, I need compassion. Which brings me to my thought for the week.

As thanksgiving approaches this year I began to think “what do I have to be thankful for this year?” After all, I have been diagnosed with an incurable bladder disease, what could I possibly be thankful for??!!  This has been the most difficult year of my life. I feel like I have been through so much pain and suffering. Thankful??? I'm not feeling it!

But then I began an in depth consideration of the matter.  I am actually thankful for so many things. These are just some of the things that I am thankful for this year. I am always thankful that God watches over me and that He is in control of my life. I am eternally thankful for the support of my family through my IC journey. Without their emotional support I know this would be so much more difficult. I am indebted to  the ICA and all that they are doing to raise awareness and  support research. I am forever thankful for the ICA’s facebook page that has united me with some great people that are going through some of the same things I am going through and always give me support.  I am also thankful for my gynecologist who had enough knowledge to know that I might have IC. I have read about so many people who have suffered needlessly for years with no diagnosis or who have been misdiagnosed.  I am also appreciative for my urogynecologist who was not only sympathetic, but was also able to offer different treatment plans to get my pain under control. I thank God for my Urologist who wants to treat the problem and not just the symptoms.

I am also grateful for a physical therapist who is so excited about what she does that I cannot help but be excited about what she is going to do for me. She listens to me and understands how much pain an IC patient is going through. When I went to see her Thursday, I was crying as I was talking to her because I am so thankful for the medical professionals in my life who are truly making my journey more tolerable. I was also crying for the many people who suffer unnecessarily and who I want to help as much as possible.

If you do not have a close personal relationship with God all you have to do is admit you are a sinner and ask him to come into your heart.  He can comfort you no matter how much "rain" is in your life.  He will never leave you and He is always there for you.

If your family is far away or you don't feel close to them. I hope that you will reach out to them during the holidays, so that they know how much you love them.

If your doctor does not understand what you are going through or if you are not being offered different treatment options, I think you should look for another doctor. If your doctor is not compassionate, I urge you to seek another medical professional. Whether you are being treated for IC or something else, you deserve quality medical attention. If your doctor does not believe your pain is real, it’s time to move on. If you are in an area where medical assistance is not readily available, I suggest that you do your own research to help yourself as much as possible. If you work in the medical field in any capacity,  I sincerely hope that you will treat your patients the way you would want to be treated. Good, quality medical professionals are such a blessing. This year I am thankful for the exceptional treatment I have received and I pray that EVERYONE receives the quality treatment that they deserve!!!

Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
1 Thessalonians 5:18

Please make an effort to listen to the music at the end of my posts. I choose each song very carefully and the lyrics usually go right along with the point I am trying to make.

Please feel free to leave me your comments or suggestions below.