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Sunday, February 24, 2013

IC Can Make You Think You Are Crazy!

My theory was wrong.  I didn't have an UTI after all.  My urine culture came back negative.  So that means I had an unexplained fever for over 2 weeks.  I could chalk it up to a virus.  My Urologist suggested a CT scan to see if something else is going on.

I like the idea of a CT scan because my problems could be something other than Interstitial Cysitis (IC). Right??!!  I was thinking the same thing before I went to my Urologist.  It takes me over an hour to get to his office and I was thinking on the way.  How about taking IC away from the equation?  Then tell me what is wrong with me.  

As an IC patient I have been told that a lot of my symptoms  and or problems are related to my IC.  Although I do believe that most of my major problems are related to IC.  I am human and I had other problems before IC.

I like his thought process, that it could be something totally unrelated to IC.  He gave me the example of an eighty year old lady who had unexplained frequency and urgency.  He did a CT scan and found out that she had a kidney stone blocking one of her ureters.  Once removed, she did not have the problem anymore. Wow!  What an amazing story.

Although I have frequency and urgency, PAIN is my major problem.  I told him that I use my pain killers sparingly.  I told him that I have a lot of pain and want to take something, but I don't want to be addicted to anything.  I said "I feel like I am being tortured!!!  He said "I know IC can make you feel like you are crazy!"  Very well put, that pretty much sums it up for me!!  I can totally relate to that feeling right now!!!

Friday night I watched 20/20 "Robin Robert's Journey."  It described her battle with cancer.  As I watched it, I cried because I can relate to so much of her pain and her emotional struggles.  But I also longed for what she had, not the cancer, but the platform to raise awareness for her illness.  She was able to take time off from her job and return several months later without any problem.  There was a camera crew documenting her treatments and she had the support of millions of viewers.

A short clip from 20/20 Robin Robert's Journey

Are you thinking that IC must make you crazy?? For me to long to be going through what a cancer patient goes through is on the insane side.  Or is it??!!  I can't leave my job and expect to be able to return after several months.  I would have to find another job. I am going to a doctor,physical therapist or both at least once a week.  I am going through different kinds of treatments including bladder installations, bladder stretch and medications. The financial burden of the doctor visits and medications alone are almost too much to handle some days.

Currently I am back on Elmiron (the only oral medication approved by the FDA for the treatment of IC).  The first six weeks I was nauseated 24/7, but I had to just keep going.  Most days I would take a Zofran (which is what they give to chemo patients for nausea) and go to work and try to live a semi-normal life.

I wish I had a camera crew to document my journey, but I do not work for a major news show.  So I will just continue to reach as many people as I possibly can through my blog, my handouts and my personal testimony.

Robin went through some major pain and mental struggles.  She fought so many personal battles over the last year and she has overcome so much.  At one point, she almost died!! But she beat it and hopefully she is on a path to a complete recovery!

I am thankful she shared her story.  Her life reiterates the fact that it is good to have a positive attitude. She said "Being optimistic is like a muscle that gets stronger with use." I'm feeling that quote and I think I am going to start using that one more.  She also said when she looks in the mirror she sees a strong woman.

February 19th marked my one year anniversary for having IC.  Whoo Hoo!  I am frustrated that I am still fighting the battle with this chronic illness. I feel like I have come full circle.  I was very sick, then I was better, now most all my symptoms are back.  I am also determined to keep trying new treatments and to remain positive. 
I don't know where my IC journey will take me.  I do know if I trust God to guide me, then it will go where He needs me.  I would rather do something that I am not sure about and have His guidance than to do what I want and not be in His will.

"Trust in the Lord with all your heart,And lean not on your own understanding;In all your ways acknowledge Him,And He shall direct your paths."  Proverbs 3:5-6

Yes, IC can make you think you are crazy, but I will not let IC make me crazy.  I will keep trying new treatments, medicines, exercises and diets.  I will pray for Godly wisdom in my journey, so that I can try to make decisions based on God's plan for my life.  When I look in the mirror, I want to see a strong woman!

Don't let IC or anything make you think you are crazy. Concentrate on making yourself better. Keep a positive attitude and fight like a girl (or boy)!

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Sunday, February 17, 2013

I Am Blessed

After two weeks of feeling miserable, I decided that I might have a UTI.  I bought one of those AZO UTI  tests you can buy at the drugstore.  It was inconclusive, but said that I might have one and I should consult my doctor.  I made an appointment to go to the doctor (AGAIN).  He went ahead and prescribed  Macrobid for me.  Based on my symptoms he was treating me for an UTI.  He said I would feel better in a couple of days of taking the antibiotic, if it was an UTI.

Two days later, I felt better.  Finally!!! I am so thankful!  I'm not thankful that I have an UTI, but that I know what it is and can treat it!  My symptoms were just like a flare.  I had a low grade fever,achy and lower back pain.  That is how all of my flares have felt.  Then my doctor thought I had a virus.  Since my symptoms didn't go away after the period he suggested for a virus and my bladder instillation (medicine inserted directly into the bladder via catheter) didn't make me feel better, I thought it could be a bladder infection.  But Interstitial Cystitis (IC) symptoms are so similar to an UTI, at least for me, that it was difficult to tell the difference. In fact, I couldn't.  I am so thankful to be feeling better now!

The first day I started feeling better I was scheduled to go to physical therapy.  I had missed my last appointment because I was sick, so it had been over 2 weeks since I had been. I could not wait to get there.  Ironically I made a wrong turn and got lost on my way, so it took me longer to get there.

I am going to physical therapy (pt) for Pelvic Floor Dysfunction (pfd).  I originally was having a problem with chronic pain in my female area (vulvodyndia).  My primary doctor tried to treat it for several months without any relief.  Then he referred me to an Urologist about an hour and a half away.  I suspected I had pfd, after researching the symptoms.  PFD is usually related to the presence of too much tension in the pelvic floor muscles. Unexplained pain in the low back and pelvic region are some of the symptoms of pfd. My main symptoms were pain during intercourse and chronic pain in that area,pain in my lower back and pelvic area.  I asked him to send me to physical therapist that specializes in vulvodyndia and pfd.

It is a very specialized field, so I was delighted when my doctor found a physical therapist only and hour and a half away from my home town.

I called my therapist to ask a few questions before I went for the first time.  I had read some horror stories and I was a little scared.  I hate to admit it, but I veered away from my trusted sites like and and I read some horrible things.  My therapist explained that the first session she would be asking me some questions followed by a physical exam, if I was up to it.  I was not up to the exam, but she gathered enough information to know what needed to be done.

Not Me and Not My Therapist
My pt told me, if I had any questions to email her before my next appointment.  That way she could address as many as possible, therefore, saving more time to do the things that I would come to know as such sweet relief.  She always asks me about my week and about what kind of symptoms are bothering me that day.  We have set some goals and try to reach them only for my IC to flare and we have treat the symptom that is screaming the loudest that day.

As I have mentioned before, she does skin rolling as treatment for me.  It hurts like crazy when she is doing it, but it gives me relief from the pain in my legs.  I want her to keep doing the skin rolling to relieve the pain in my legs and eventually my bottom and back.  Then she will start working on my pfd.  I have so many problems that we have not even started on the main problem I originally started going to pt in the first place.  We decided this week that I will continue to go to physical therapy for the rest of my life and she and I can be best friends forever.  LOL  Of course, the ultimate goal is for me to get better and to not need pt, but we can still be friends!

I have learned so much from my physical therapist!  Sometimes she speaks a language that is way over my head, but I am slowly learning.  I have learned that most of my pain is muscle pain .  My body has been in so much pain that my muscles have tensed up in response to that pain.  I can see now that many of my daily aches and pains are muscle related.  You don't have to have IC to experience muscle pain.  I have learned that I can do things that make a difference in my treatment process.  I have learned that I can do controlled breathing and gentle stretches every day that make a difference. 

I have learned that what you eat ,how you breathe and how you void (I'm not going to go there) make a difference in how your body feels.  She makes me keep a "Food and Bowel Dairy" for Pete's sake.  It forces me to look at my eating, etc. habits.  It is right there in black and white and hard to ignore.  I am also accountable to her every week.  I think that makes a huge difference.  It is one thing to read about something and say to yourself  "yeah I need to do that."  But it is another thing to have someone tell you that you need to do something and hold you accountable for it the next week.

I remember when I first meet my physical therapist.  I thought to myself that I am blessed.  My therapist understands more about IC than anyone I have met that doesn't have IC.  She understands the pain IC causes and the mental toll it takes on your body.  She lets me do most of the talking and really listens to what I say no matter if it is about IC, therapy, my daughter or whatever, she listens!  She always says "In a perfect world, you could come twice a week for therapy."  But it is not a a perfect world, so I only see her once a week which really slows down the healing process.

I am blessed with a spirited, therapist who is passionate about her job. She makes me want to do good things for my body.  But she is also a Christian who is not ashamed of it and has compassion for others.

Mark 8:38  For whoever is ashamed of me and of my words in this adulterous and sinful generation, of him will the Son of Man also be ashamed when he comes in the glory of his Father with the holy angels.”
I feel more in control of my treatment now more than ever.  Many of you reading this can benefit from physical therapy too.  If you have urinary frequency, urgency or a lot of low back, pelvic region and genital area pain that is ruining your life, physical therapy may be the life line that you need.  If you have tried pt in the past and it did not work for you, it may be time to give it another try.  I know that I am blessed with the best therapist in the world, but I believe anyone can reap the benefits of physical therapy.

I would love to know what your experience with physical therapy have been. Or if you have suggestions for stretches etc. Please leave your comments below.

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Wednesday, February 13, 2013

My Love

You are my love
Gentle and strong
You by my side
Never feels wrong

Now I am sick
Our plans on hold
However a greater
Love story has never been told

You are there
When I need a hand
When I am lonely
You are my friend

I’m not sure
Where I would be without you in my life
I am so blessed
Just to be your wife

Even when we grow old
We will still have each other
To laugh and love daily
To treasure and to hold    

Barbara Bennett

Sunday, February 10, 2013

Pity Party

This is not me, but a reasonable facsimile.
I woke up and peaked my head out from under the covers.  I only feel good when my eyes are closed.  All I want to do is go back to sleep.  I have already slept 10 hours, but it doesn't feel like enough.  Today is Tuesday I have decided to go to the doctor today. I must be in a flare.

It all started Sunday.  I started feeling extreme pressure on my belly button  and pain all the way down my legs and every place in between. I felt like my stomach was going to explode. I felt like I had a UTI, if you know what that feels like.  For me a UTI has always been burning, frequency, urgency and extreme lower back pain.  I felt achy all over and I had a low grade fever. All of this to go along with my daily extreme nausea that I have had since I started back on Elmiron about 6 weeks ago.

I laid in bed on Sunday for a while, hoping that the pain would go away.  I thought about how I am spending so much time in bed now.  Much more than before Interstitial Cystitis (IC).  I thought of all the things I am missing out on. I could be enjoying a mid-life crisis now, instead I have IC.  I could be sowing my wild oats now, instead I have IC.  I could be watching the Pre-Game Super Bowl Show, instead I have IC.  Sarcasm aside, I felt pretty miserable.     

Jennifer Hudson and those beautiful kids!

I went to the doctor Tuesday for a bladder instillation (medicine inserted directly into the bladder via catheter).  I felt better the next day for a couple of hours.  Then I started feeling achy, my lower back was still hurting and I had a low grade fever.  I called the doctor's office and they said he could see me Thursday.  So I took some pain killers and went to work.

Thursday when I went to the doctor and I knew something was up when the nurse said he wants to talk to you first.  I didn't want to talk to him (very unusual, I normally have a list of questions to ask him) I just wanted another instillation and I was going to be out of there,see ya, thanks, bye!!  But he wanted to talk??!! 

 He said that a GI virus is going around and he thinks that is what I have.  The symptoms were achy all over, low grade fever, stomach pain and diarrhea.  I had almost all the symptoms.  I realized as an IC patient you spend so much of your time feeling bad that you don't even know when you have a virus.  You just think it is another day with IC.

I began to think, if I could just take some time off of work and get over this, that would be great!  If I had some other major illness, I probably would have finished my treatments by now and be back to a more "normal life." I am not trying to minimize other illnesses,by any means, I'm just trying to put it in prospective. I read this week that IC is a chronic illness.  For me, that describes my journey thus far...I'm dealing with a chronic illness.

This chronic illness has me stressed and I had a meltdown.  I like to call this one a controlled meltdown.  I felt very bad, but I hadn't totally lost my mind (like so many other times before).  On Tuesday, I told the doctor that I have to drag myself out of the bed everyday and then drag myself to work.  After I work for a couple of hours, I am totally wiped out.  I stay totally exhausted all the time. I told him that I know all the medications that I take make me tired, but that it still concerns me.  I also said it worried me to have to take so much time off from work to go to the doctor and physical therapy.  So he suggested I take more time off from work and go to a counselor.  What??!! Were you not listening to me??!!  When he suggested this I said that would be more time off of work for me. He said "maybe they can give you some tools to help you and you won't need so much time off from work."  

I thought, well who couldn't use some stress management techniques.  I am scheduled to start counseling in a couple of weeks.  This week has been one big pity party for me.  I have felt bad more days this month than good and I have felt sorry for myself.  It is hard not to do when you feel bad so much of the time.

God began to deal with me on this.  The book I am reading specifically talked about self-pity.  It says that self-pity is supported by thinking only of ourselves and no one else.  It also says that if we are not careful, we can actually become addicted to it.  With God there is always a new beginning available.  Self-pity keeps us trapped in the past.

Let Go And Let God

Isaiah 43:18-19

18 “Forget the former things;
    do not dwell on the past.
19 See, I am doing a new thing!
    Now it springs up; do you not perceive it?
I am making a way in the wilderness
    and streams in the wasteland.
Who has not longed for things in their past?  When you get older you long for your youth.  When you hurt all the time you long for your former body.  When you have a chronic illness you long for your health.  How much time do you waste in self-pity?  The answer is "way too!!!"
God is doing a new thing in our life!  We need to let go of the former things, quit feeling sorry for ourselves and make our way in the wilderness.  I know I need to practice what I preach!  It is not easy!!!  One of the best ways I have found to not have a pity party is to try to encourage or help others.  It takes the focus off of you and puts the focus on someone else.

So let's try not to feel so sorry for ourselves, look for ways to take the attention off of us and forget about dwelling in the past!  I think we will all feel better and we can learn to live our new life!

What do you do to take your mind of your illness,pain or health that helps you deal with it better? Please leave your comments below.
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Sunday, February 3, 2013

Walking On Sunshine

When I woke up Wednesday morning, I felt fine.  By 10:50 a.m. I felt the total exhaustion that I usually have the pleasure of feeling around 3:00 p.m. every day.  Oh no!! What could it be?!!?

About an hour later, my whole body ached and all of my symptoms of Interstitial Cystitis (IC)  were in overdrive.  I felt an increase in lethargy, burning,pelvic pain and I was running a low grade fever...FLARE!!!  How could this be?  It had only been 3 1/2 weeks since I had my last flare. 

I took a pain killer and went to work and still felt terrible.  I continued to work all day.  I checked my temperature throughout the day and it dropped back to normal.  I still felt and looked horrible.  I had decided that if I felt this bad the next morning, I would go to the doctor for a bladder instillation.  Instillations of DMSO are the only thing that I have found that give me relief from my flares.

That night, at home, I still felt extremely bad. My husband had cooked one of my favorite comfort foods; baked chicken and rice.  It was like he knew that I was going to need it!  I was too nauseated to eat much of it though and that was disappointing.

My mind began to wander and I was thinking that my flares were starting to be closer together instead of further apart.  My flares had been about every 6 weeks, now they are about every 3 1/2 weeks.  I started to feel sorry for myself and thinking that eventually my flares would get closer and closer together until one day I would just be in a constant flare all the time...sigh!

Lately, I have been looking at the calendar in fear.  I was fearing my next flare.  I knew that it was about time for another one and I was living in fear of it. That is no way to live!  That's not even living, that is fearing!

I slept well the night of my flare.  Good sleep is a gift from God!  The next day, when I woke up, I felt fine!  Alleluia!  When I went to work, I told my co-worker that I felt good.  I said "yesterday I felt awful and today I am, how can I describe this?"  "I am walking on sunshine!!!"  I felt a great sense of not only relief, but control!

My flare only lasted one day and I didn't have to go to the doctor to treat it.  This has never happened to me, what did I do differently?  Now that was the burning question in my mind.  What new treatment am I trying or how did I manage it better??

I am on a new medication.  I started taking Elmiron again.  Elmiron is the only oral medication approved by the FDA for the treatment of Interstitial Cystitis (IC).  It is believed to replenish damaged areas of the bladder lining.  When someone has IC, it is believed that the moucus layer of the bladder is damaged.  When this lining is damaged, it causes pain.  So if Elmiron rebuilds the lining, there should be less pain.

Elmiron does not come without side effects of course.  The most feared symptom for IC patients is hair loss.  Some people say it it worth it, but I am a huge fan of my hair.  So yet another fear is constantly in the back of my mind. 

The main side effect that I have experienced is nausea.  I have been dealing with nausea for over 15 years now,  because of my IBS.  However, the Elmiron has brought the nausea to a new dreaded level.  For over 5 weeks now I have been very nauseated every day.   I felt like I had a lump in my throat and lead in my stomach. My appetite has been very low.  I was even considering not taking the Elmiron any more because of it.  Instead, I decided to take one of my dosages right before I go to bed.  So if it made me nauseated, hopefully I would sleep through it.  Since I have made that change, the nausea has not been as bad.

I also rested a lot the day I had the flare.  I went into work late and I layed down in the bed after work for over an hour.  I also had some good sleep the night of my flare. Ah good sleep, I love me some!

Maybe it was the combination of lots of rest and the Elmiron.  Who knows?  Who can figure out IC, not me!  Although I am convinced that I will continue to try, maybe for the rest of my life.

All that worry and fear.  Why do we do that?!?...we are human that is why.  But the Bible teaches us not to worry or be anxious, but to be thankful for what we have and pray.

Never worry about anything. Instead, in every situation let your petitions be made known to God through prayers and requests, with thanksgiving.  Philippians 4:6
We can let worry and fear control our lives, but it will rob us of our peace and our happiness.  What good comes from worry and fear?  None!  The only winner is Satan!  Let's use all that energy on trying to make ourselves or others feel better.
I can hardly express how thankful I am that my flare only lasted one day.  It made me think about the negative way I was looking at things.  I don't need to worry, I need to pray and give thanksgiving instead because I am Walking On Sunshine and don't it feel good!!!

This song made me happy.  I hope you give it a try, go ahead it just might cheer you up!

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