IC My New Life

Recently I was in a Interstitial Cystitis (IC) flare* again. Number three of the year. They have been happening about every three weeks. Until now I have been able to get them under control within a few days. This one was determined to take over my body and stay.

Since I was in horrible pain all the time I called my IC doctor for a bladder instillation. The soonest appointment available was almost a week away. In the condition I was in I knew I would not be able to work. So I needed something quickly. I called the office of the doctor that diagnosed me. His office is over an hour away but I was desperate. When I asked the person that answered the phone if he had a certain cocktail for the instillation, you would have thought I was speaking another language by the way she reacted. Well, I guess I am for those who do not have IC. A cocktail is the ingredients or medications that they insert directly into the bladder via catheter. They said it would take a week or so to work me in as a new patient. It has been four years since I have seen him.

Out of urgency (pun intended) I called the Urology Center that I used to go to before my Urologist left town to start his own practice in another state. Oh how I wish he was still there. He understood the pain of IC and he was a very good at encouraging me!

When I called and stated that I needed a bladder instillation the receptionist said do you have IC? She at least seemed to understand a little bit about what I have. The more I talked to her the more she seemed to know. I had tears in my eyes as I talked to her.

When you have chronic pain and illnesses it is life changing. But when you have a chronic illness that no one has ever heard of it brings with it an entirely different set of challenges of its’ own. So when someone understands it can be emotionally overwhelming especially when you are in a lot of pain and a  flare.

I made an appointment for the next morning. Mornings are difficult for me and I try not to do make any appointments that end in “am.” but I really wanted relief. The office is over an hour away from my house so I needed a driver. My husband was working so I called my wonderful sister. She eagerly agreed to make the trip in hopes of relief for her baby sister.

We left town about 9:15 and headed through a small town then onto the interstate. I sat up front but reclined my seat as much as possible to take some of the pressure off my bladder. As we were about ten miles out from our destination the sky was gray and the clouds were very dark and heavy on the bottom. There was sunlight shining behind the clouds onto the barren, gray, winter trees.

I told my sister that it looked very “Wizard of Oz-like.” She agree and told me to watch out for any clouds that formed a funnel. As she continued to drive the bottom fell out and sheets and sheets of rain began to pound the car. I sat up from my inclined position to be an extra set of eyes on the road for our safety.

As we exited off towards our destination we saw at least a dozen cars pulled off of the highway on either side. I have never seen that many cars pulled off the road because of rain. Shortly after, just in time for us to depart from the car to the five-story brick building that would hopefully bring me relief, the rain stopped.

We were thankful that the rain stopped but there was still a mighty wind that chilled us as we walked in. The kind of wind that later in the day we would see took the roof off of a building we rode by and the kind that knocks over power lines, reroutes traffic and ends up on the evening news…Yeah that kinda wind.

We both had to use the first restroom we came to in the Urology Center. I was in pain because I needed to go so bad. Then we made our way to the fifth floor and I checked in. A few seconds later a friendly nurse took me to ask some questions and check how full my bladder was with a wand.

When the second nurse came in to ask me questions before she sent to me to another part of the Center for the instillation, I told her I needed to go to the restroom again.

She sent me down the hall for the instillation. I found my sister in the first waiting room and she went with me to the second waiting room in the Treatment Center. They told me it would be a long wait. I had to go to the restroom one more time before I went back for the instillation since I knew after I had it I would need to hold it as long as I can to get the most benefit.

The nurse that gave it to me was great. She instructed me on how to do them at home and actually seemed to care about helping me. I hugged her before I left and thanked her for being so nice!

Then my sister and I made our way to a nice little deli that my husband and I used to always go to when we had to make this trip. It is something to look forward to on a trip that can be quite uncomfortable for me. And when I remembered that they serve “FREE” ice cream it made me feel like a kid again.

We enjoyed our meal and headed on our way. We both agreed that it was a shame to go to a larger city and not do any shopping, but I certainly did not feel like it and was ready to get home. I lay in the back seat most of the way home and rested my weary body. When I got home I tried to void but was unable to until about seven hours after my procedure.

That evening was hard for me. My stomach/bladder/pelvic are were swollen and I had an extreme amount of pressure and pain. It was difficult to even find a comfortable position to rest in. The next day I felt better. I still had bladder pain but not as much and I didn’t have any lower back pain. I was able to go to work for a few hours and I made it to church that Sunday morning. I felt better for a few days…

*WHAT IS AN IC FLARE?

IC flares are not the same for everyone. Nearly 750 people responded to a 2009 ICA Quick Poll asking them to define an IC flare. Definitions included:

• Period of extreme pain with increased urinary frequency/urgency across several days or weeks (19%).
• Sudden increased intensity of symptoms (12%).
• Dramatic increase in IC symptoms across several hours (7%).
• Worsening of symptoms from baseline (5%).
• Subtle worsening of symptoms (4%).
• Over half (52%) of the IC patients surveyed felt that all of the above definitions defined an IC flare.

– See more at: http://www.ichelp.org/about-ic/symptoms-of-ic/icflares/#sthash.pnFhDqqZ.dpuf

It was the first Sunday of the new year. I was looking forward to going to church.  I was excited to be able to worship and fellowship. However, my body was not feeling well. My bladder was burning and hurting. I hit snooze so many times Sunday morning that I lost count. Eventually (and not cheerfully, I must say) I drug myself out of my warm, comfortable bed to go to church. I reassured myself that I would return to the comforts of my bed as soon as possible…that is how I trick myself into getting out of my warm, little nest most days.

As I was getting ready and coming to my senses of the realization that it is a privilege to be able to worship my heavenly father with my church family, the phone rang. It was our Pastor. In a very disappointed voice I heard him say that the morning worship service was canceled because of a water leak in our church basement that affected our heating system.

It was an ironic twist of turns for me. Now I didn’t have the choice or that privilege of worshiping with my church family. But since I didn’t feel well, it was also a relief. I determined that there is more than one way to worship my heavenly Father. I decided to pray, read, and study my Bible from home. In my mind I also pictured myself going back to bed for a nap. I knew I had plenty of time before my sister and I went to a “Celebration of Life” service for a mutual friend.

The nap never happened. We went to the beautiful and moving service for a sweet, lovely lady that lived her life for the Lord. I was thankful to be a part of her life. I am blessed to still be a part of her family’s life. After the service, it was time for me to go lead my Bible Study group…No rest for the weary! I felt good, but I still had that burning and pain in my bladder.

By the time I went to bed that night I knew that I was in an *Interstitial Cystitis (IC) flare. The next morning when I woke up I felt awful. My bladder pain and burning was more intense. My lower back was aching and my stomach was swollen to the extent that I looked and felt like I was about nine months pregnant. I had not slept well the night before and I had a general feeling of malaise.

I took a hot bath in hopes that it would make me feel better and I would be able to go to work. I did feel a little better but I still felt miserable. I resolved that I could work a few hours from home throughout the day when I felt up to it and not go into the office.

I finally took that nap that I should have taken the previous day.  But mostly I just stayed in my recliner with my heating pad on my bladder. I did enjoy watching the movie “Notebook” again. Before the ending I had to change the channel…that movie always makes me cry at the end and I didn’t feel like crying.

When I tried to sleep that night I was in so much pain and so uncomfortable that I had a hard time finding a position that was bearable. My pelvic area was so swollen, painful and burning so much that I wanted heat on it, but then even the heat reached a point that was intolerable. I tossed and turned and finally got to sleep.

I was in a flare most of the week. I felt awful. The constant pelvic pain and pressure of an IC flare is horrible. My stomach was so swollen and hurt to even touch it or have anything like clothes touch it. It is a sensitivity that I have never experienced before IC.  It was difficult to find clothes comfortable enough to wear to work.

I was so disappointed that I started off my new year by being in a flare but it also humbled me and made me so thankful when I felt better. It brought me B2B…you may be asking what in the world does she mean by B2B!! For me it is: Back to Basics…it is a reminder to be thankful for what I have, what I can do, and to encourage others. So often I get caught up in the busyness of day to day life that forget God’s plan for me. I forget that there is more to life than my small little world and what happens in it. I forget to be a light in this world of darkness.

This year has started off in a difficult way but it has also brought me B2B…and for that I am thankful! My goal for this year and beyond is to be more humble and do less complaining. I want to be humble when it comes to the love for others. And complain less about everything and instead try to offer and look for solutions.  Yes, both of those will be difficult challenges, but that is what the Lord has laid on my heart. I want to get B2B!

I would love to see your comments or your plans for the new year below!

*WHAT IS AN IC FLARE?

IC flares are not the same for everyone. Nearly 750 people responded to a 2009 ICA Quick Poll asking them to define an IC flare. Definitions included:

• Period of extreme pain with increased urinary frequency/urgency across several days or weeks (19%).
• Sudden increased intensity of symptoms (12%).
• Dramatic increase in IC symptoms across several hours (7%).
• Worsening of symptoms from baseline (5%).
• Subtle worsening of symptoms (4%).
• Over half (52%) of the IC patients surveyed felt that all of the above definitions defined an IC flare.

– See more at: http://www.ichelp.org/about-ic/symptoms-of-ic/icflares/#sthash.pnFhDqqZ.dpuf

September is Interstitial Cystitis (in-ter-stish-uhl sĭ-stī’tĭs), Awareness Month. And as many of you know I have Interstitial Cystitis, aka IC, or “Painful Bladder Syndrome.” IC is a chronic, inflammatory disease that causes severe pain in the bladder and pelvic area.

For the last few months my bladder has been relatively quiet. My other issues have been screaming much louder.

My chronic sciatica never seems to let up, my IBS bothers me severely for days on end and my Fibromyalgia and pain in my feet seem to always be there. But my bladder for whatever reason has not been the pain that impacted my quality of life the most. That is not to say I didn’t have bladder and pelvic pain, because I did, it just wasn’t the most crippling issue going on with me.

I didn’t want to say anything about or brag that my IC wasn’t bothering me, because I knew that at any time she (my bladder) could get upset about something and turn my world upside down and all I could do is try to hang on.

Well, it happened. She came back and she brought a friend with her. She brought a pain that felt like a knife stabbing me in my back. In fact the back pain is what hurt the most. I felt like I had a bladder infection, but I knew I didn’t. I knew that it was her and that she was going to make herself known. She didn’t want me to forget about her.

I felt bladder and back pain, pelvic pain and pressure. One evening my husband and I were going for a short walk and I told him I felt like I had swallowed a basketball into my stomach and it was putting pressure on everything. I felt horrible!!

In a way I’m glad I went through that. I don’t want to ever forget what it feels like because I want to be able to relate to others who are going through the same things. I want to be able to relate to others so that I can encourage them.

“Therefore encourage one another and build one another up, just as you are doing.” 1 Thessalonians 5:11

Since this is IC awareness month I want to spread awareness to as many people as possible. I try to do this all the time. But this month I want to be the Butterfly of Change. I want to be one of many who educates others about this horrific disease and of course we want a cure!

As this month comes to a close, I am sad, because I know that there will not be as much attention on raising awareness for IC. But if you are reading this and you deal with the life changing effects that IC has on you, I hope that you will join me and be the Butterfly of Change.

Let’s continue to raise awareness. Let’s continue to educate others. Let’s be the Butterflies of Change for IC!

I have more information on IC below. Feel free to share any of this information with anyone! If you know someone who has the symptoms below, please ask them to talk with their doctor or click on this link to find out more information on support and treatments. Www.ichelp.org

You can contact me personally if you have any questions about IC.   My email address is bbbennett65@gmail.com.  I also have a Facebook support page called “Friends with IC.” You can send me a request to join and I will be happy to connect you with our group of friends.

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Information About IC:

It is estimated that 3 to 8 million women and 1 to 4 million men in the United States may have IC. Many adults state that their symptoms started when they were a child.

No one knows the cause of IC and unfortunately there is no cure!

Symptoms include, but are not limited to:

Burning pain in the bladder

Frequent urination both day and night

Urgency to urinate

Blood in the urine

Pain in the Pelvic region

Urine cultures coming back negative

Did I mention pain, pain, pain??!!

The pain from IC can be so severe that has been compared to that of cancer patients!!

Each case is difficult to treat and most people have to try several different treatments to find the one that works best for them.

Treatment plans include:

The IC diet – which involves eliminating foods such as Citrus, Cranberry juice, Caffeine, sodas, Artificial sweeteners and more.

Medications

Therapies

Surgery

Most of these treatments can be time consuming and costly. Some patients never find relief and are left with pain and suffering that they must deal with day in and day out.

 So let’s continue to  Raise Awareness, Encourage Others and Find A Cure!

Isn’t she cute? Just don’t make her mad!

Something awoke the raging inferno inside my body, also known as my bladder. For a while now, my bladder has been more of a constant, burning and nagging pain, reminding me of who is still in charge, but not screaming the loudest on the pain scale.

She has been more of a persistent reminder that I need to watch what I eat, drink and do. A constant indication of how I am supposed to live my life…centered around her of course! But I have much relief from the nonstop bladder pain that I had at the onset of my diagnosis of Interstitial Cystitis (IC).  Praise The Lord!!!

Whatever it was that made her mad, soon became the obsession of my thoughts. What had I done to make her angry? Was it something I ate…maybe that lemon I had in my water?? Maybe lemon irritates my bladder, while it does not bother most, because it is alkaline. Maybe it was those two or three extra yoga stretches that I tried all in one day. Maybe, Maybe, Maybe. Maybe she just wanted to remind me who is the boss! Maybe I’m just losing my mind!!

When she is upset, she also brings along her friend “lower back pain.” This is a different kind of back pain other than my usual chronic back pain. This is a more severe pain. I thought I was in a “small” IC  flare…if there is such a thing?! However, despite the pain, I felt pretty good. I didn’t have the body aches and fever this time, so I’m just trying to take it easy as much as possible.

Sitting has always made my bladder pain hurt more, but most of what I do at work, volunteering at the church, teaching Bible study, etc. requires me to sit. So I try to stand and walk as much as possible, but it is not always easy.  Trying to figure out what caused her to flare up can be as frustrating and draining as the pain itself.  So I attempt to keep my mind focused on other things for the most part. I may never completely understand my bladder, and that is okay!

Dwelling on a problem is not going to make it better. In most cases it just causes stress and stress causes my body more trouble. Instead I am going to trust that The Lord is not punishing me. He is preparing me to trust His plan, not my pain.

I had a huge decision to make this week. It was very stressful.!!! As some of you may know I needed more hours at the computer store. I was working only a few hours a week doing the bookkeeping. But the hours were just not there for me at the beginning and I understood that. They in turn understood that I would be looking for other work in hopes of working two places with enough combined hours to pay my bills.

As it turned out, I had a job offer at a big, local car dealership  for a full-time position. I thought the people there would be great to work with and I felt like a part of their family after my job interview. You know how sometimes everything just clicks and it seems like a good fit??!! Well that is the way I felt!!

However, a few days later,  I was offered more hours at the computer store, since business has increased.  I knew that I would have more flexibility there so I decided to stay. I am making a lot less money than I was making before I was diagnosed with Interstitial Cystitis…about half as much. But as I told my Mama, this is my life now.

I am also making a lot less than I was offered at the car dealership, but I would also be working more hours. My decision was based on many factors. If I stay at the computer repair store, I will have more time to spend on praying, reading and studying my Bible. I will have more time to spend on my Small Group that meets at my house every Sunday night for Bible study. I will also have more time to spend with my Mama when she comes over to my house to help me clean every Friday morning. I will have more time to spend growing my Avon business. And I will not have to go straight to bed everyday when I come home from work with pure exhaustion from working eight hours. Also if I am working fewer hours I hope to feel like spending more time with my husband in the evening. All of these things are very important to me!!!

For me right now, I think I have made the best decision. Who knows what may happen later on in my life, but for now, I have faith that God will watch over me; take good care of me and bless me. And I pray that I am a blessing to those I work with and those that I have contact with on a daily basis.

I have had the burden of seeking employment for months now. This song is about laying down your burdens…we all have burdens!! This song talks about letting go of your burdens; seeking His face, coming as you are and letting the rescue begin! I hope you will take the time to listen to this beautiful song by David Crowder. The lyrics are below.

“Come As You Are”

Come out of sadness
From wherever you’ve been
Come broken hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow
That heaven can’t heal
Earth has no sorrow
That heaven can’t heal

So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You’re not too far
So lay down your hurt
Lay down your heart
Come as you are

There’s hope for the hopeless
And all those who’ve strayed
Come sit at the table
Come taste the grace
There’s rest for the weary
Rest that endures
Earth has no sorrow
That heaven can’t cure

So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You’re not too far
So lay down your hurt
Lay down your heart
Come as you are
Come as you are
Fall in his arms
Come as you are
There’s joy for the morning
Oh sinner be still
Earth has no sorrow
That heaven can’t heal
Earth has no sorrow
That heaven can’t heal

So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You’re not too far
So lay down your hurt
Lay down your heart
Come as you are
Come as you are
Come as you are