“Wizard of Oz-Like”

Mar 14

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!

encourager

 

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.

Wizard of Oz

 

 

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

B2B

Jan 16

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!

keep-calm-and-get-back-to-basics-3

 

*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

Worthless

Nov 28

It is amazing to think of the events that lead up to that one episode on that day. From earlier in the morning when my sister handed me a flyer to the fact that I was working at the office by myself. Now I realize God was preparing me for what was about to happen.

When I first arrived at the office I decided to work on some flyers to hand out for the Small Group Bible study that I lead. I knew if I didn’t do them first I would get so involved in work that I would forget to print them. After I finished them I laid one on my desk so that I could give it to one of my co-workers that was not in the office. I was inspired to work on them because my sister handed me a flyer from her church that morning.

Two of my other co-workers were at the office when I arrived. They asked me if they could go together to a customer’s office to work on their computer equipment (it is rare that they leave me at the office by myself.) They assured me that they were not expecting any customers to come in to pick up their repaired computers since most of them were picked up earlier in the day. I said that it would be fine with me.

I had a cold all that week and my Fibromyalgia was flaring at the same time. To say that I felt awful would have been an understatement. I felt worthless!!  I didn’t even go into the office on Monday but managed to work a few hours from home. Every day I prayed the prayer that God would use me that day to do His will but I also told Him that I really didn’t see how He could.

It was Friday and I felt better. So when the guys said they wanted to go out and leave me in the office by myself I felt good about it. As soon as they left someone came in to check on their computer, after he left someone came in to pick up their charger, then someone else came in to drop off a computer. And of course the phone was ringing in between customers. It was not as quiet as I hoped it would be!

As I was standing there talking to the customer dropping off her computer I heard a loud crash outside. When I looked up I saw a small car come plowing into our parking lot. It missed hitting the next door building by inches.

Immediately I said “Let me go check on these people.” I went to the small car that got hit from behind first and I looked in the back seat and there were three little girls crying. I asked them if they were okay and they all nodded their heads yes. Next I asked the young female driver, about the age of my daughter, if she was okay. She just stared at me. Her hands were shaking and I knew she was in shock. I looked inside her car and saw her cell phone I asked her if I needed to call 911 and she nodded her head yes. I then took her hand and looked her in the eye and asked if she was okay. She again nodded yes.

The passenger, a young man, jumped out of the car and approached the driver of the other car. The other driver was an elderly man. I asked the older man if he was okay and he said he was fine. I thought that the two men were going to argue but they just exchanged a few words and were fine.

The Emergency Responders were quickly on the scene. They first checked the little girls while I took their mother into my office to use the restroom. I tidied up the bathroom for her and explained that I work with all men and have clean up behind them on a regular basis. She seemed very appreciative and complimented me on our nice facilities. Thankfully she was recovering from her shock.

When she headed back outside I followed her to see how I could help. The girls were carefully checked and released by the friendly Emergency Responders.  I asked their mother if she wanted me to take the girls inside while they were checked out and talked to the Highway Patrolman. She said that would be fine.

I love children but because of my limited energy I hardly ever spend much time with any now. First, I offered them something to drink.  Then I gave them some paper and pens for them to draw. They seemed to be happy.  I asked questions like how old they were and their names. I practiced spelling their names by writing it on the plastic cups that I had given them.

Then I told them that the most important thing was that no one was hurt in the wreck. At this point they had not warmed up to me.  I went on to tell them that the reason that they were not hurt was that God was looking out for them. The oldest one immediately told me she goes to the Good News Club (GNC). This seemed to break the ice.  GNC is a Bible centered after school program for children in the elementary schools in our town.

Their Dad (the passenger) came in to check on them shortly afterwards and I remembered that flyer that was laying on my desk. I handed it to him and asked him if he had a church home. He said no and that they had been through a lot lately. He told me that they had been out of work and had gotten behind on their bills. He said that they were getting caught up now.  He also told me that he has faith in God.

I told him that God allows things to happen to us so that we will grow in our faith and grow closer to Him. I said that even the wreck happened for a reason and that he just needed to figure out why.

Now that I have had time to think about it, I believe I know why the wreck happened. One reason is so that I was able to witness to their family and invite them to church. They may never come to my church but I have planted a seed and I know that God will water it. I think another reason is so that I could show the love of Jesus to all of the people involved in the wreck.

The Holy Spirit can use us at any time, we just have to be willing. I felt so bad that I didn’t really think that God could use me. I felt so worthless…do you ever feel that way? I do, all the time! It goes to show that God can use us when we lest expect it, so we need to be ready!! How can we be ready? By daily prayer, reading of God’s word, and spending time in Christian fellowship…My advice…Be ready! God can make us strong when we feel worthless!2-corinthians-12-9

 

Freedom From Discouragement

Oct 13

My body is very sensitive. Any kind of change in food or routine can make a huge difference in how my day…or night goes for me.

Mondays are usually good days for me. I have had two days that I don’t have to go to work and I generally feel pretty rested. This past Monday was one of those blessed days. I felt good most of day.

good-day-7

When I got home, after work, my lower back was hurting so much that I didn’t want to try the unobtainable feat of going to sleep. I stayed up as long as I could.

Since I know my body so well, I was correct in my assumption that falling asleep was going to be difficult. I tried and tried for hours, but I was in too much pain and it seemed to spread like wildfire throughout my body.  It actually felt like parts of my body were on fire!

My feet were hurting and burning. I had sharp, shooting pain coming from my toes. My feet were hurting so much it hurt for them to touch the bed. It hurt for them to touch each other.

My calf muscles were burning and my knees were aching. My bladder was hurting. In fact my entire pelvic area felt like I had a heavy belt around it putting pressure on it. I felt a deep ache in most of my muscles, especially my shoulders.

The noise from the Dish receiver, in my closed armoire, was driving me bananas!  I have had that receiver in my bedroom for years and it has never bothered me before, but that night was different!! I put my pillow over my head and began to cry.

I felt IT jump on my back and now I was wallowing in IT.  DISCOURAGEMENT had taken over every once of my being.

I didn’t want IT to win. I wanted to fight back!  But at this point, I had little energy and little strength.  I decided to soak in a hot tub with Epsom salt. I could clearly still feel IT on my back, but I wasn’t wallowing in IT so much now…starting to feel SOME mental relief.

Armed with a pain pill and three heating pads I headed to bed.  I was finally able to drift off to sleep and attain Freedom from Discouragement.

I think what caused some of my pain was wearing a pair of shoes that seemed comfortable at the time, but apparently are not the best fit for me…literally!  The wrong shoes and a Fibromyalgia flare are the recipe for pain and Discouragement.  However… I want to focus on beating Discouragement…the Freedom from Discouragement part.

How Do We Get Freedom From Discouragement?

I think Discouragement often happens when we are exhausted. When we are mentally or physically exhausted we are a prime candidate for the devil to creep into your thoughts. When we are exhausted things can seem more bleak than they really are.

Sometimes rest is the best solution. Stop, rest and refresh!

Fight back!  If what you are doing is causing you Discouragement, try a new approach.  Shake things up a little bit. Pray about it and get on the same page as God.  Ask the Holy Spirit to guide you and help you come up with a new plan.

It is always a good idea to remember that God will help you. All you have to do is ask Him. There is incredible motivating power in faith!

Look for courage deep inside yourself.  Sometimes courage is not shown by loud words or actions.  Instead, our courage may be to silently tell ourselves to keep fighting and keep going when the day has been extremely hard.  Tell yourself  “I will continue to fight tomorrow and I will hope for a better day.”

Always remember that no negative feeling lasts forever. Hang in there my friends!

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The Butterfly Of Change

Sep 26

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!

ic butterflies

Dark Yellow Mood

Sep 15

It has been a long time since I have posted on my blog. The main reason is that I have been in a “Dark Yellow Mood”….I will explain. When I was a little girl in Elementary School I wrote a poem that describes how I have been feeling lately.

Dark Yellow Moods

I have these dark yellow moods

I turn dark yellow, and act in a strange mood.

I act dumb and crazy.

But sometimes I act like a “Know-It-All.”

A very deep subject for such a young lad, but I was kinda weird…but being weird is okay. I think many people would agree that being weird is acceptable. It makes our world more interesting.

I’m not sure why I called them “Dark Yellow Moods” because for me yellow is a very happy color…maybe a dark ,black mood would be a better illustration. Dark, black would more accurately describe my mood.  I can’t really tell you exactly one thing that caused my mood. Most likely it was a combination of things.

depression

When you have chronic pain it can affect your mind…it can depress you. I think that is part of it. I also think I was feeling overwhelmed by many things including the fact that I am so limited in my energy these days. I want to do more for the Lord, for my family, and for me but my body is saying “un uh.”

During my depression I had many days of uncontrollable crying. I was depressed and I couldn’t “snap out of it.” It does not always work that way. It is not always that easy. I couldn’t wave my magic wand and just get over it even though I wanted to very much!

One day at work I decided to stand and lean over my desk to do my work, since it hurts so much for me to sit…bad idea. I did it waay too much that day!

That night my back was hurting very badly. When I was trying to get to sleep I was in too much pain. To take my mind off of the pain, I began to really concentrate on how it would be when I’m in heaven with my Maker and spending eternity with Him. I didn’t realize it at the time but I had tears flowing from my eyes.  And for a few precious moments I felt no pain at all!!

It is unusual for me not to feel some kind of pain. Whether it is the chronic sciatica in my left leg, pain and burning from the neuropathy in my feet, bladder pain or the deep muscle pain and aches from the Fibromyalgia. But for a moment I didn’t feel any pain and I felt a huge sense of peace!!

If you have never experienced this kind of peace it may be hard for you to imagine. I believe this was the Holy Spirit letting me experience absolute peace for just a moment. It didn’t last long and it didn’t “snap” me out of my slump either. But it did make me look forward to the day when there will be no more pain and I will spend all of my time with my Heavenly Father.

While I was in my funk, I prayed that God would release me from my burden of depression. My faith in God never wavered during my dark days. In fact I think this was one of those growing, and learning experiences that only strengthened my faith…so take that devil!

Continuing to pray about my depression and continuing to live my life as normal as possible, not giving into the desire to not go to work or not go to church because I didn’t feel like myself, I finally feel like I am no longer in a “Dark Yellow Mood.”

Again, I can’t really say what brought me out of my rut. There were many things that helped including; time, regulating my medications, prayer and faith.

I am so thankful to God for helping me overcome my depression. There are times when we all feel “out of sorts.”  If you find yourself feeling sad and need some extra help I am going to provide a link that has information on things you can do that will hopefully help you.

https://www.nimh.nih.gov/health/topics/depression/index.shtml#part_145400

A couple of things they recommend that helps me too:

  • Try to be active and exercise. Go to a movie, a ballgame, or another event or activity that you once enjoyed.
  • Break up large tasks into small ones, set some priorities and do what you can as you can.
  • Try to spend time with other people and confide in a trusted friend or relative. Try not to isolate yourself, and let others help you.

You may not feel like doing anything, but doing “something” always makes me feel better.  Keep working at it until you figure out what helps you.

We may experience some tough situations, but we will not be destroyed!!

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Crickets In My Head

Jul 12

I had been preparing all day for our vacation trip. I washed clothes,cleaned out my car, etc. Then I went to work. After work I came home and I was exhausted.

I sat down that evening for a few minutes to check my email in the living room. I read a blog post about the faith and forgiveness that was displayed by those in Charleston after the nine people were killed at the Emanuel AME Church.

My husband came in and turned on the TV. He was watching a concert (not just any concert, it was ACDC) and the music was very loud and distracting. It was a band that I enjoyed listening to when I was younger. I was still trying to read and I wanted to share the blog post that I had read about on Facebook.

I was trying to write a comment to go with the post, but I couldn’t think because the music was so loud. At one point, I was sitting there with my ears covered, trying to think…how sad was that??!!

So I quickly went into my bedroom to finish my thoughts. I sat down to type, but there was a cricket outside the window. Again, I covered my ears to try to begin to think. It seemed to be getting louder and louder like it was in my head!! All I could think about was getting that terrible sound out of my head. I wanted to be able to think!! Just think! I wanted to cry! There was a cricket in my head and I couldn’t think!

cricket

My emotions were intense and I was about to start crying and have a full blown meltdown!! My anxiety level was way beyond normal. I had to concentrate very hard on what I was typing. I had to only think about what I was typing. It made me feel better. That is why I love writing so much. You can lose yourself in the words. The words you type are the thoughts in your head…the crickets in your head…and writing lets you release the crickets and bring peace.

I was able to control my emotions, the cricket stopped and I felt much better after the whole situation was over. I felt serenity. Then I heard that cricket again. He was so loud! Was he in the house? Was he in my head?

Now that I have so many medical issues including Interstitial Cystitis, Fibromyalgia, chronic sciatica, IBS and so on, I have become super sensitive to noise. It is very distracting and I can’t concentrate. I become irritated very easily. I realize that I have this problem, but I’m not quit sure what to do about it. I need to pray that God will help me overcome this issue. I need to pray that God will help me control the crickets in my head.

 

The Raging Storms

Jun 07

The storm irrupted after work. I was running late and I gobbled down a sandwich for lunch on my way to work. About an hour later the stomach cramps began. I took some medicine and soon forgot the pain.

Another hour goes by and I am hungry again, very hungry. I started a new medication for the neuropathy in my feet and it helps with the pain, but I stay hungry more often…oh great, now I’m sure to pack on some more unwanted and unneeded pounds…ugh!

To ease the hunger, I gobbled down a protein bar on the way home (what was I thinking…oh yeah, I wasn’t!) and soon felt the cramps and pain again. When I got home the violent storm began!!

I had to rush to the bathroom and I was definitely in an Irritable Bowel Syndrome (IBS) attack. It was very severe. I felt so nauseated and weak I dragged myself to bed. A few minutes later the storm repeated again. This time it made me feel a little better.

lightning bolt

You know how you feel when you have a stomach virus? With a virus you need to throw up and after you do, you are weak and nauseated. You know it is going to happen again and it is a terrible feeling. But after the last time, when it is finally all over, you feel a little better, only weak and worn out from the whole experience. That is how I feel all the time. That is how IBS makes me feel. I feel extremely weak, worn and nauseated most of the time and the majority of the time, I don’t even stop and rest, I just keep going.

If I stayed out of work every time I was sick, over the last twenty-three years, I would have had a lot of excessive absenteeism. Yes, I have been dealing with IBS for over twenty years. It is a horrible hand to be dealt. It has caused me to miss out on many social events, makes me feel miserable and makes deciding what to eat a tremendous task.

I have learned over the years that my body is very sensitive, even the tiniest variance can be costly. My diet mostly consists of the same foods over and over, so as not to upset the uncontrollable storms. If I eat too fast, too much or wait to long to eat, the consequences are colossal!

I must avoid spicy foods, fried foods, high fat foods, dairy, red meats and wheat, just to name a few. It limits my choice of foods greatly and it is a constant thought process as what to eat and what to avoid. I am still learning daily what works for me and what doesn’t.

As I deal with this burden, among many others, such as Fibromyalgia, Interstitial Cystitis, Restless Leg Syndrome, Neuropathy, Menopause, etc, etc. I often think “Why me?” But as I lay in bed that night, after the brutal storm had ended, I began to use that time to pray. It was an hour and a half before I felt like getting up to spend some time with my husband before he went to bed. That was a lot of time for prayer!

Of course, my mind would wonder and I was not praying the whole time, but for the most part, I was talking to the creator of the universe!! The time I spent in prayer that night was intimate time with God. That time was invaluable!! And I know that if I were not sick, I would not have spent that much time in prayer that day. So I choose to look at my hardships as a positive. I choose to let the works of God be displayed in me, I choose to be thankful for the raging storms in my life.

john 9 3

I Wish I Had A Sunburn

May 25

As I listened to my friend describe how her severe sunburn felt, I could relate. I could relate to the burning skin. My skin burns all the time. I could relate to having difficulty sleeping. I have trouble all the time. I could relate to not wanting clothes or anything to touch the skin. I feel that way all the time. I could relate to the being tired from not sleeping well. It happens to me everyday.

I could relate and empathize with her. I felt sorry for her, because I knew exactly how she felt. It is no fun and it makes you feel miserable. I wish I had a sunburn that will go away in a few days. However, I have fibromyalgia (FM) and it will not go away in a few days. I have been dealing with for a couple of years. It may never go away.

 

FM Invisible disease

I am blessed with days that are better than others. But most of the time the skin sensitivity to touch and air, the sensitivity to noise, hot and cold; the muscle stiffness, the deep muscle pain, the difficulty sleeping, the profound exhaustion, lack of stamina and the metal fatigue are part of my daily life.

When I am in a fibromyalgia (FM) flare, it is even worse. I feel like I have the flu. I ache all over my body. Even my hair hurts. It is a awful feeling and all I feel like doing is resting. But it makes sense, if my body is sick, that I need to rest.

May is Fibromyalgia Awareness Month, so I just wanted to take share some information to raise awareness about this condition. Since I have started in my FM journey, I have met other people who experience the same complex pain disorder, but I have only heard of one who says they have relief from their symptoms.

fibro month

 

Some people can get relief from their symptoms from exercise, physical therapy,therapeutic massage, and medication. I exercise daily, try to avoid stress, I have recently started therapeutic massages and I am considering trying a new medication to help with my FM. Maybe I haven’t found the right combination yet, but I keep trying. There is always HOPE!

If you suffer from FM or any of these symptoms sound familiar, there is support. There are pages on Facebook that I will list below. There are also websites for information and support, I will provide a link below.

If you have FM, reaching out to others can make a difference.  Just talking to those who are going through similar experiences can help you realize that you are not alone and we all need to support each other.  If you know someone who lives with fibromyalgia, please understand that their pain is real.  Just understand that they are not lazy, they may be just conserving their precious energy.

It may sound crazy to say wish I had a sunburn, but if you have FM, you will understand how I feel. Please reach out to others for support, research as much as possible and never give up HOPE!

FaceBook Pages:

National Fibromyalgia & Chronic Pain Association

National Fibromyalgia & Chronic Pain Association

Websites:

http://www.fmcpaware.org/fibromyalgia/treatment.html

http://www.fibromyalgiaawareness.com/2012/05/what-is-fibromyalgia.html

FM hope

A Good Nap

May 16

sleep mask

 

 

My day started with an IBS attack.

I felt nauseated, weak and my bed kept saying “Come back, come back!”

 

I gathered a few items and headed that way

My earplugs, my eye mask, and my cat; who wanted to play.

 

cat playing

 

My husband was awake, so I had to drown out his roar.

It took a mere sleep app turned up all the way, a pillow over my head and a door!

 

At first I was freezing and then a hot flash,

Immediately, I threw all the covers back.

 

Then my toes turned to ice.

Oh, those cozy, fuzzy, warm socks made them feel nice.

 

Then back to freezing, so I couldn’t sleep,

I cranked up the heating pad on my bladder and fell in deep.

 

The sleep was awesome and it was for two hours straight!!

Not that I enjoy being sick, but straight sleep felt great!

 

It’s not everyday that I get good rest

But today I did and I thank God, for I am blessed!

little_girl_sleeping_0071-0807-3112-4937_SMU

Tweets by @bb65ichope
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