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Tuesday, October 30, 2012

On The Lighter Side

What is you sanctuary?  No, not where do you go to church?  What I mean is where do you go or what do you do to relax or to escape from the world?  Well, mine is the bathroom, more specifically the bathtub. Some days I will run a hot bath. I don’t fill the tub more than about an inch to start. I am a sucker for the sound of running water, I have found.  I run the water very slowly once I am in, just to hear the sound of running water.   I turn off all the lights and light some candles. Sometimes it is not very dark, but the sound of the flames flickering is so soothing. I also enjoy watching the flames dance. It reminds me of how beautifully my daughter dances. Sometimes I massage salt scrub on my legs that smells like coconut.

Sound a little self indulgent? Great, now you are getting the point! If it is daylight outside, I can see the trees outside our bathroom window. I always think of what my husband said when we were building the house. He said he had them place the tub, so I could look out the window when I take a bath. Ah, true love!

I usually forget to grab my towel to make a pillow of sorts before I am in the tub and the candles are lit. I have to be very careful not to catch the towel on fire as I lower it from the rack. No, of course I haven’t caught a towel on fire before, but I can just image how hard that would be to explain to my  I have found the need for these bath tub soaks more and more. I think I am addicted to them. Oh, well I can think of worse things to be addicted to, can’t you?? Let me answer that for you, of course you can!

This time is sacred to me. I don’t want the T.V. in the background or any noise. I prefer only the sound of the flames flickering, the water running and my thoughts.   I often use this time to relieve my aching body, not concentrate on the difficulties of living with Interstitial Cystitis (IC) and to pray.  I feel close to God in these quiet moments in the tub.  A closeness that I would not have felt or experienced before IC came along and slowed me down to a snail’s pace.  I am thankful for these moments and I think everyone should have a time to be alone and separate from the world. 

 If you think you are too busy and that you don’t have time for stress relief, I think you should give it a try and see if it helps you. Just set aside a few minutes everyday to reflect, pray or meditate. Your sanctuary may not be the bath tub, it may be taking a walk and feeling close to nature, walking on a treadmill or sitting on a park bench.  You know what gives you stress relief, so do it!

Set this time aside for YOU everyday.  It may make you a better spouse, parent or friend. It may make you a better person. Don’t feel guilty for taking this time to yourself even God rested on the seventh day. We all need a break, we are all human and we need time to unwind and reflect. If you are an IC patient, I think this will definitely help you. Just try this for the next 2 weeks. I think you will see that it will make you a less stressed, more relaxed, healthier person. Who knows you may even live a longer, healthier life. You can thank me later. But seriously, I hope you will consider taking some time to yourself to renew and recharge your life.

Just a fair warning though, this habit may be highly addictive. No animals or children were harmed during testing.

 “By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.” Genesis 2:2

My Sanctuary

My view

Sunday, October 21, 2012

A Gift From God

I had a difficult week, not only physically, but mentally.  It all started when a co-worker's baby was born on Monday.  It triggered emotions that I have not felt in years.  I was pregnant 9 years ago and lost the baby. I was never able to get pregnant again and finally had a hysterectomy because of all the problems I was having.  Losing that baby was so difficult. I wanted another child so bad. It took me a long time to get over that. When I did, I realized that everything happens for a reason and that God had different plans for me.  However, when I saw a picture of his baby, the flood gates opened. I felt very sorry for myself on the way to work. When I pulled up in front of the office, I started crying.  At that very moment, I heard a text come in on my cell phone. It was my daughter. I stopped crying and answered her text. I felt ashamed that I was feeling so sorry for myself and pulled myself together and went in to work.

Tuesday I felt so good, I went into work early and stayed late. I was pain free and my spirits were good,  I didn't even take the time to stop for a walk or a lunch break. I just ate lunch at my desk. We were very busy at work.  I had things I needed to do,so I never slowed down. I was feeling "normal." That was until about 6:30 when my IC body said "what are you doing??!!"  I hit a wall and I hit it fast. I was so tired that night, when I tried to go to sleep, I had trouble.  I had to take something for the pain and to help me sleep. The next day was even worse. I could barely function as a person. I was so tired and in so much pain. I was also feeling sorry for myself again. I sent my daughter a text and explained how lousy I felt and why. She said I should know better. Talk about role reversal. She was telling me I should know better? I thought about what she said and I knew that she was right. I did know better, I did over do it. But let me try to explain. When you have IC, you feel bad so often that sometimes you just want to feel "normal" and do all the things you used to do before you had IC. I also thought I am so blessed to have my daughter. I felt so ashamed again for being upset that I could not have more children. God knew that I would need my daughter to help me one day when I was struggling and he gave me Miranda. He has blessed me so much with her life. I am so proud of her and the young lady that she is today. She is truly my gift from God.

"Every good gift and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows" James 1:16

 I wrote a poem about her life this year for her birthday. It describes her life from the beginning, to her childhood when she was so fearless to last year when her pap smear results came back with precancerous cells. God decided he would protect her and she is doing fine now. I have a copy of the poem below.

CNA Graduation
Miranda & Flopsey
Senior Prom

High School Graduation

Me & Miranda

I want to dedicate this blog to my beautiful daughter. I am so thankful that God blessed me 22 years ago with her beautiful life.


Beautiful baby
God’s gift to us all
How could we take care of you?
So fragile and so small

Beautiful baby
Daddy’s little girl
Tiny little angel
Welcome to our world

And then she grows…

Beautiful girl
Mama’s little dream
Fearless and friendly
Dancing, beauty queen

Watching you grow
We can’t wait to see
When you grow up
Who you will be

Beautiful Lady
Our hearts are amazed
Bold and daring
Gentle, caring ways

And now you are grown
You’re in God’s hands
When the storm came
He kept you in His plans

Beautiful Lady
Heart full of gold
We are so proud of you
Now that you’re grown!

By: Barbara Bennett

Sunday, October 14, 2012

Finding My Way

When I was first diagnosed with Interstitial Cystitis (IC), I was a physical and emotional wreck. Prior to my diagnosis, I was working out  at the gym 3-4 times a week.  I was lifting weights and using the elliptical machine like clockwork. My physical body was finally getting back into the best shape it had been in a long time.  I felt my spiritual life was just fine too...ah, how we can fool ourselves. I was a member of the church I grew up in, I was on the nominating committee, the personnel committee and I was teaching Sunday School.  I prayed and read my Bible everyday.  How much closer to God could I be? Oh, I was to soon to find out!

When my physical body was in such disarray, I began doubting God. Why me God? Why do I have to be cursed by this terrible disease, I'm the one trying to do everything right?  Why do I have to be in so much pain? Why am I barley able to function as a person? Why do I have to take these drugs that put me in a fog? Why do I have to be the one that has trouble walking from the car to my office? Why am I the one who can't enjoy the simple things of life such as going out to eat with my husband, spending time with my family, enjoying my friends? Why am I the one that is not going to have a "normal life". Why, why,why? I would cry myself to sleep every night, asking God why??!!??  I kept praying "God, I can't do this on my own, I need you to help me." I prayed it because it was what I had heard all my life, it was what I needed to pray, but I didn't feel it in my heart!!!

Finally, I went to talk to my pastor. He said, maybe this is a time for you to "Be still and know that I am God"  Psalm 46:10. A time to slow down from the day in day out of life. He told me to read the book of John, like I had never read it before. I did, and things finally became so clear. Then, I prayed the same prayer and felt it in my heart and had such peace!!!

I am going through this for a reason. We all have our struggles and we are going through them for a reason, it is up to us to find out why. We can feel sorry for ourselves all the time and do nothing or we can figure out what our purpose is in life is. I figured out that when you are very sick, you find out who really loves you and who your true friends are in life. I figured out that the most simple things in life are taken for granted and they shouldn't be, they should be cherished. I found out that I could no longer clean my house, which I enjoyed so much, I  always kept a meticulous house. However, I spend more time with my Mom now, because she comes once a week to help me around the house. I found that I don't always feel like going out to eat with my husband every Friday night, something that I always looked forward to.  However, now he will go pick up our supper and take care of me no matter how bad I feel.  I found out that I could no longer teach my Sunday School class that I loved so dearly. However, I can encourage others who are going through some of the sames struggles I am going through.

 A very dear friend of mine said one of her friends was having chronic pain, but that she didn't know what to say to her because she couldn't relate. I said, I can relate to that now. I can relate to the person who feels all alone and scared, not knowing what is going to happen. I can relate to the person who is not sure they will be able to continue working because of all their pain. I can relate to the person who was just diagnosed with a non-curable disease. Don't get my wrong, I still cry myself to sleep some nights, but now at least I know a purpose for all my suffering.  I can relate, I can comfort and I can encourage...I have found my way!

"We do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need."  Hebrews 4:15-16

Please take a few minutes to listen to this song.  The lyrics are so beautiful, they really touched my heart and I pray that they touch yours as well.

Wednesday, October 10, 2012

The Beginning

My new life... 
Welcome! this is the story of "my new life" after being diagnosed with Interstitial Cystitis. I want to share my story with you to educate and encourage. I would love for you to share your thoughts or comments as well.

Sunday, February 19, 2012 I was at lunch with my family and I had to keep going to the bathroom, my lower back was hurting and I felt miserable. Even though I felt very bad, I found comfort in being surrounded by my family. A feeling I would grow to understand more and more. I called my gynecologist the next day and he called in some antibiotics for me. 

After a week, I went in to see the same doctor and he prescribed different antibiotics. For three weeks I had extreme nausea, frequency, urgency, lower back pain and frequent night time voiding.  After the third round of antibiotics, I called the nurse and said  "I don’t feel better, I feel worse!" I went in to see the doctor and he said my urine culture was negative and last year when I thought I had a bladder infection, my urine culture was negative. He said he suspected that I had Interstitial Cystitis. I had never heard of this. Immediately, I went home and started to research this terrifying disease.
My gynecologist sent me to an Interstitial Cystitis (IC) specialist in a town about an hour away. My husband drove me there and I felt all right during the ride. By the time I saw the doctor, I was in unbearable pain in my lower back and pelvic area. His nurse first asked me a bunch of questions and then said “Did you research IC on the internet?" I said “Of course." She said “Do you think you have it?" I said” I hope not!" Then she gave me the IC Self Screener questions. The doctor said any score over 10 is suspicious of IC, I scored a 27. He also gave me a bladder instillation and I had some relief of my symptoms.

He diagnosed me with IC based on my pain level, the answers to the IC Self Screener questions and the fact that I had some relief from the instillation. He gave me some handouts, told me what not to eat, what drugs to take and said “I will see you in 2 months” I left his office in tears, I felt scared, alone and confused Really??!!  You just told me a have a disease that is going to change my life forever and you will see me in 2 months???  What about suggesting some therapy, support groups, some exercise or meditation that might help? What about seeing me sooner, what about saying “I’m sorry, but we will do everything we can to help you…something….anything!  I immediately started looking for another doctor!

I then started having additional symptoms.  I decided to go to an urologist in my hometown. And of course this might be an opportunity to get a different diagnosis, since I was in denial.  However, he agreed with the diagnosis and his solution was to keep taking more Lortabs, he even prescribed a stronger dosage. He said “IC patients take pain pills." " Do they become addicted?" Yes, but, oh well” he continued.  I was hoping he would disagree with the diagnosis or at least offer me some different treatment options. He did neither. Again, I left his office in tears. Still feeling scared, alone and confused.
I continued doing my own research and found the ICA’s web page. I also found the ICA’s facebook page. At last something that truly gave me the support I needed! Praise God for the ICA! I emailed the ICA and asked them for their referral list of doctors. I discovered an Urogynecologist in my home town. I made an appointment with him.

This would be my third opinion and hopefully he could figure out some different diagnosis that would be easily treatable and I could have my life back.  So I went to this new doctor longing for a new diagnosis or at least some different solutions. He agreed with the diagnosis (not what I was hoping for). He, however; offered me several different treatment options and here is the biggy…He said “What you are going through is very difficult and you have my sympathy.”  At long last I found a doctor that would be my new primary IC doctor for " my new life.”

My life has changed completely since the diagnosis. I have chronic pelvic and back pain.  The more I do, such as bending, sitting,standing or walking too much, the more it hurts. I have the energy level of someone in their eighties... I am only 46. I can no longer do many of the things I enjoyed before IC. I had to hire someone to clean my house. My seventy-nine year old mother comes once a week to help ME around the house. I rarely go shopping or to church because I don't have the energy or I don't feel well.

I have also been diagnosed with Irritable Bowel Syndrome (IBS) vulvodynia and fibromyalgia within the last few months. So far, this has been the hardest journey of my life. But I also see it as a new beginning. A chance to look at life differently. A chance to make a difference.  I can still be a good wife and mother. I can still smile at strangers that I pass on the street. I can still try to encourage my IC family on facebook. I can still be a friend to my friends when needed. I can still worship God. I am still me...only different. This is " my new life."

I hope this helps you understand a little bit better about what I am going through, but I also hope this encourages you. Maybe you need to slow down, reflect and take a step back from your life. What are you doing in your life to make a difference? I am limited physically now, but I can still write and hopefully comfort others. 

My hope for this blog is that I will encourage you and you will comment and encourage me. I plan to post regularly, so please read as much possible and let me know what you think.
God bless you all!
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Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

I would like to dedicate this blog to my wonderful husband of 26 years, Alan. He is always by my side and always there when I need him.