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Sunday, January 27, 2013

I'm Alive!

This week has been draining, both mentally and physically.  I went to physical therapy on Tuesday this week. I told my therapist that I was not sore from last week. Well, she showed me, she really worked me over.  She was doing skin rolling on my legs, back and sides.  She said the connective tissue on my sides was constricted more that anyone she had seen.  It was very painful, but I know that it helps me tremendously, so I endured the pain.

I wasn't sore when I left therapy, so I went on a quick shopping trip.  I was mainly returning an item, but I received a store credit.  A store credit is an opportunity to shop again!  As I was looking around the store, I started to feel like every muscle in my body was sore. I didn't shop for long and embarked on my hour and a half journey home. 

I couldn't wait to get home and soak in a hot tub with Epsom salt (my sanctuary) See blog post entitled "On The Lighter Side"  Even after a long soak, every muscle ached and I knew I was in for a rough night of trying to sleep.  As it turned out, I took something to help me sleep and I slept 8 straight hours!  Let me repeat that, 8 straight hours!!! That has not happened in the last 11 months that I have been sick.  I felt great the next day!  What was God doing??

The next day, I felt like my mental and physical capacity were in over-drive.  I was a little chatter box at work and decided that I wanted to go to church that night.  I hardly ever go to church on Wednesday night.  I feel like it is just too much on my body to go to work and sit at my desk for so long and then go and sit at church.  It also drains my limited energy to have to socialize in any way. The walk from the car to the church even seems daunting to me, after I have worked all day.  But I just felt a strong urge to go. 

Our pastor was not there and the Young Adult Minster shared a message with us.  Afterwards, I asked him to talk with me.  I needed some Christian counseling, as I often do now that I have IC.  I felt like God was trying to get my attention that there was something that I needed to be doing for His ministry. We talked and I cried.  He pointed out, that whatever I do, I need to be passionate about it.

Well, what am I passionate about?  I am passionate about helping other people who are suffering.  I am passionate about writing. And I am passionate about telling others about Jesus. God was preparing my heart...

The next day I had the chance to talk to someone about Jesus.  Before I had IC, I did not have the courage to do that. Oh no, not me.  Someone else would have to do that not me! 

IC has changed me.  Some things that have changed are making me a better person.  After all it is enough to just be a nice person, right??? I can just do good things and I will go to heaven, right? I know the answer is "No!"  You have to believe in Jesus, confess your sins and commit the rest of your life to live for the Lord, then when you die you will go to heaven.
After I talked with my Assistant Pastor, I had a meltdown on the way home. I was feeling very sorry for myself.  My body is so limited in what I can do now that I sometimes feel like God is disappointed with me.  As I was thinking about this, the lyrics to this song were in my head. 

The Hurt And The Healer
The question that is never far away
The healing doesn't come from the explained
Jesus please don't let this go in vain
You're all I have

All that remains

So here I am
What's left of me
Where glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I've fallen into Your arms open wide
When the hurt and the healer collide

Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through...

Mercyme The Hurt And The Healer

I'm not dying from Interstitial Cystitis (IC), I'm alive!  A part of me has died, but I also have my new life now. My favorite line from this song is "Jesus, please don't let this go in vain."  I don't want all my suffering to go in vain.  I want good things to come from it.  I can still encourage others and set a good example.  I can still tell others about Jesus and write my blog. I can still counsel and motivate others. 

Sometimes God leads us the hard way instead of the easy way. If everything is easy in our lives, how will we ever learn to lean on him?  If we think everything is good in our lives, then we are more tempted to handle things ourselves.

If someone is sick, dying or having surgery what is the first thing they do?  They ask for prayer or turn to God for help.  If you are suffering, sick or just feel like something is missing in your life, it is the perfect time to get closer to God.  

You ever have that feeling that you should be a better person or treat others with more compassion?  Where do you think that feeling comes from?  God!  He is tugging at your heartstrings and He wants you to let Him into your life. So if He is tugging at yours like he is tugging at mine then I hope you will take His hand and let Him guide you.

Even though a part of me has died, I still hope that God will take what is left of me and use it for His will because...I'm alive!

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Sunday, January 20, 2013

Happy Feet

Monday I felt great. So guess what I did?  I did too much, of course! I was crawling around on the floor looking for an earring.  Don't I know that I can't do that? Well I can, but not without paying a price for it. I was exhausted afterwards and had trouble sleeping.  Tuesday I was exhausted at work.  I almost postponed my hair cut after work, but decided to go ahead.  I have been putting it off so long because I am always going to the doctor or therapy or I am just too tired.

When I got home I wanted to lie down for a while because I knew my daughter and her fiance' were coming over soon.  They showed up early (very unusual for her) so my rest was cut short.  They also brought Paris with them.  I probably over did it playing with Paris and just not resting enough.  I greatly enjoyed their visit and I am so thankful for all of them.
  This is Paris.  I call her Peanut.

 Razors Where?

Later on that evening, I experienced the "razors in the bladder" pain.  That is the first time I have ever felt that sharp stabbing pain in my bladder.  Needless to say I had trouble sleeping that night as well.  I woke up at 5:00 a.m. with bladder and back pain.  I tried a muscle relaxer first.  Then I tried Ibuprofen to ease the pain.  By 7:00 a.m. I gave in and took a pain killer. Sigh...not exactly how I wanted to start my week.  My week improved by Thursday.  I was ready to go on my planned shopping spree.

Pre-Shopping 101

Before I was diagnosed with Interstitial Cystitis (IC) I loved to go shopping.  Now I do most of my shopping online.  It's not as much fun for me, but necessary for now.  I have been thinking that I need a good pair of casual shoes to wear to work that are not tennis shoes.  I asked my physical therapist what she recommended.  I hoped that after my physical therapy appointment I would feel good enough to go look at shoes.

She had recommended The Walking Store.  Since I was not familiar with this store I looked it up online and I began what I call "Pre-Shopping."  I use this technique quit often now before I go shopping. I go to a store's website and find what I like, write down the brand, style and price of what I like.  That way when I go to the store I can ask a sales associate (if I am fortunate enough to find one) to lead me in the right direction.  If not, at least I know what brand name to look for and how much it should cost.

Unfortunately this store was in the mall.  "Mall" is a four letter word to me now.  I try to avoid malls like the plague. There is usually so much walking involved just getting to the store that it is just not worth it to me.   I searched this store on the mall directory and found much to my delight that this store is near a mall entrance.  So far, I already like this store. The shoes, however; are not cheap! I usually prefer to buy cheap shoes.   I knew it would be an investment more than anything.  So I went ahead and made plans to go.

Before I left the office to make the hour and a half trip to therapy, I was told that we had a 90% chance of snow where I live.  Did I hear that right?  Snow in my town??!! It hardly ever happens around here.  When the word is even mentioned there is a mad rush to the grocery stores for milk and bread.  I tried not to get to excited, but it was hard.  After all a 90% chance sounded like a guarantee to me.

All the way to therapy, it rained.  I'm not a big fan of getting out in the rain,much less rain and dropping temperatures.  I wondered if the weather was going to interfere with my plans.  When I left therapy, the rain had stopped.  It must be a sign, I thought.  I was meant to buy some shoes today!

I entered the crowded mall parking lot.  I was so happy that there was a handicapped parking space available close to the entrance that I needed to enter.  Now that I have IC, every step I take has to be worth it.  There is a lot of effort involved in shopping.  I have to plan ahead more now, but I still enjoy it most of the time.

I walked in the store and there was no one else in there.  I had the full attention of the salesperson.  This is exactly what I wanted.  Sometimes when I shop, I just want to browse and not be bothered.  This was different, I was on a mission.  A mission to find a comfortable pair of shoes.

I'm Not a Shoes Horse

I am not one of these people that loves shoes and has a fascination with them.  I am more of a clothes fanatic. This was more about making peace with my feet and trying to keep them happy. After all, I have not been too kind to my feet over the years.  When I was younger, I wore high heels most of the time.  My feet are paying the price for that now.  When I go shoe shopping, I see all these cute shoes that I like. But most of the time they are the ones that are not good for my feet. Hence my lack of enthusiasm for shoe shopping.  I told the salesperson "I don't like shoes, I only like to take them off'"

Back to the mission at hand. I told him exactly what I wanted. A dressy to casual, black, low heeled slide on shoe.  The first pair he suggested were the ones I had picked out in my "Pre-shop," but they did not feel good on my feet.  I have very high arches and buying shoes is usually frustrating for me.  He then suggested an insert to help support my feet.  I tried on several pairs.  He then brought out a pair that I would never pick out on my own by their looks or the way they were made.  I tried them on and told him "I am diggin this pair."  I tried them on with the insert and some socks that he let me borrow and my feet were happy!

I told him that is was a a lot higher price than I normally pay for shoes.  He said "you need good shoes, good tires on your car and a good mattress to sleep on."  Well, I am all set now, I have all three and I am very thankful for all of them. He also said good shoes are for the health of your body.

Happy Feet, Happy Life

I had never thought about shoes as being good for your health.  I researched the idea and I am convinced that good shoes are a good start to a healthy body.  I will provide a link to a related article, if you want to read more about this idea.


I wore my new shoes to work on Friday.  They will take some gettin' used to, but my feet did not hurt the next day like they normally do. Maybe I am on to something, maybe good shoes are important step (pun intended) to our general health. Maybe shoes are good for the soul (I know, punny). So far, I enjoy wearing them and I think I have finally made peace with my feet!

 3 John 1:2 Beloved, I pray that in all respects you may prosper and be in good health, just as your soul prospers.


Oh, by the way, we didn't have any snow in my town that night...imagine that!  But I will continue to hope that we will have some snow this year!!

In conclusion, I want to say enjoy your family, be good to your feet and never give up on your dreams of snow or whatever it may be that makes you happy.

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Sunday, January 13, 2013

Make A Difference

I went to Physical Therapy on Thursday this week like I have been doing for the last couple of months. I usually check in and go back into a room with my therapist.  This week was a little different. While I was there, I encountered 3 other patients.  While I was waiting for my therapist the first thing I did was relax in their awesome massage chair. If you ever have a chance to use a massage chair do not pass it by, I am a big fan!

After enjoying that and relaxing for about 15 minutes, I went back up front just to make sure my therapist knew I was there. I was going to remind the ladies at check-in that I was still there. There was a line at their desks, so I sat down to wait on the line to clear out.  A lady walked up and was standing in line after I sat down. The lady at check-in was on the phone. When she got off of the phone, the lady standing in line told her that I was next in line. Who does that??!! That was such a nice gesture. I thought to myself that I must at least tell this lady "thank you" I didn't. 

Then an older man sat down beside me.  I chatted with him about the weather and thought that he seemed like such a nice person.  He said something to me like "I'm not going to complain about the weather, I'm just thankful for what the good Lord gives me."  I again said to myself again at least tell this nice man to have a good day before I get up and leave I just walked away without saying a word to him.

After therapy, I was on the elevator when this lady asked me "what are you going for?"  I handed her one of my handy, dandy information sheets about Interstitial Cystitis (IC) as I always do when I am trying to tell someone what is going on with me. She said I have heard of this.  Excuse me, what did you just say??  I have never encountered anyone who had ever heard of this!! I couldn't believe it!! This is the first person in almost a year that I have told that I have IC and they have actually heard of it. Wow!!!  I went on to tell her that I was going to therapy for Pelvic Floor Dysfunction and Vulvodynia.  She said she had a friend who had that.  Are you kidding??!!  She knew about PFD and vulvodynia too!!  She said her friend had surgery to treat hers and that it didn't help and that she has trouble all the time. 

She asked if I had to go a long time before I was diagnosed. I told her that I was blessed to be going to a gynecologist that suspected that I had IC and he sent me to an IC specialist.  I was almost in tears as I told her that so many people go for years without being correctly diagnosed. I am eternally thankful to my gynecologist for his knowledge of IC. We chatted for a few minutes and then told each other "it was nice to meet you."  Finally no fail. Someone was nice to me and I was nice back.  Finally, at long last,  I met someone who actually knew about IC!!!

This week I learned that although I always try to be nice to people, I still have a long way to go. There are still nice people in the world and I should always pay it forward.  Another thing that stood out to me is that IC patients need to educate others about our disease.  Although I met this one person who knew about IC, how many more have never heard of it.  I have handed out dozens of those information sheets and one person and only one had ever heard of IC.  No one else is going to do this for us.  We have to raise awareness ourselves the best way that we can.  I have a few suggestions...

We can make sure that our social media influence educates others about our disease.  Your facebook page can have a link to the ICA. Your Pinterest page can show pictures about IC. You can tweet about things that are important to IC patients.

Design a handout that you give to people so you can educate them about IC. You can list some of your symptoms so that others will know what to look for. You can list the ICA's website so others can go there for more information.

You can wear a teal ribbon or display one on your car. You can buy jewelry that has Interstitial Cystitis on it. You can buy a key chain or a t-shirt that shows your support.

You can make copies of pages from your ICA magazine to share with family and friends.  You can send an email to a friend explaining what you are going through and provide a link to the the ICA's web page.

You can share my blog link with your family, friend or co-worker. What? You didn't think I was going to leave that one out did you??

I think it is important to be nice to others.  Sometimes it is the smallest of gestures that can go a long way to make another person happy.  I also think if you want someone to understand how your life has changed, you may have to be proactive and explain it to them.  Some people don't understand what we are going through, so they may just ignore us.  It is easier to say or do nothing.  It takes courage for someone to say "I don't understand what you are going through."  So make your life and their life easier.  Educate them so that they do understand. Don't expect them to make the first move.

" Be kind to one another, tenderhearted, forgiving   one another,as God in Christ forgave you." Ephesians 4:32

Please share with me your ideas on being kind or your creative thoughts on telling others about what you are going through by leaving your comments below.

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Sunday, January 6, 2013

The Gift of Love

I wanted to share with you a gift of love I received for Christmas. Well, not just a gift, the gift! A mirror!!! It is not just any mirror, but it is the mirror.  If you have been following my blog, it is the one I saw on my birthday that I thought was $36.  If you haven't been following my blog,(I have to ask why not?) I saw a wall mirror in Black Bear Mountain N.C. when I was shopping on my birthday. I decided that I wanted to buy it, until my husband pointed out that it was $360 instead of $36 like I thought it was.  We laughed it off and that was the end of the that...or was it?

My husband took a day off from work before Christmas and went back to that gift shop in Black Bear N.C.,negotiated a lessor price and bought that mirror for me.  I had no idea he took off work and drove 2 1/2 hours to this store and then back. I had no idea it was under the tree.  I had no idea until I unwrapped it on Christmas day.(I wonder what else he does that I have no idea of)  I was very surprised.  He made me feel so special with that gift.

It was such a thoughtful gift.  It exemplifies what kind of person he is to me and to others.  My husband is always thinking of and doing things to help other people.  He helps our neighbors with their lawn care.  He helps my mother and his mother with lawn care and other things. He will give a ride to a total stranger (I don't recommend this one!).  He helps those that need help. To top if off , most of the time he wants to remain anonymous. He doesn't even want credit for all his good deeds.

My husband has been a great source of support for me all through our 31 years together.  In the beginning when I was so sick with Interstitial Cystitis (IC), I couldn't believe that a man whose "love language" is touch would be stuck with a woman who could barely stand to be touched at all. If you haven't read "The Five Love Languages" by Gary Chapman, I urge you to do so.  You don't have to be married for this book to help teach you ways to deal with other people.

I felt guilty for not being able to make love to my husband because of all the problems I had.  For months, I wouldn't even let a doctor touch me for the most part.  They would say, "I'm not going to do a physical exam on you today" and I would say "that's right you are not!!"  I felt like I was responsible for punishing my husband. I felt like I was less of a woman and even offered my husband an "out" if he wanted it.  I didn't want him to leave and I would have been devastated if he had left, but I wanted him to be happy.  I thought he deserved to be happy and  I didn't think I could make him happy any more. It was one of the countless battles that was going on in my mind when I was first diagnosed. 

I look back on those thoughts now and I am thankful that my husband supports me no matter what is going on in my life.  In many ways, IC has brought us closer together as a couple and I really don't want that to end.  If still having pain in my life keeps me closer to my husband then bring on the pain.  That is not to say that I am going to sit here and be in pain all the time and not fight back. Oh no, far from that.  I am trying  and researching new things everyday that will help me.  Things that will make me a better person and a better wife.

If you don't have the support of the loved ones in your life and they don't seem to understand what you are going through, I suggest that you write them a letter.  It doesn't have to be long or fancy.  It just needs to come from your heart.  Most people do not understand IC.  Before you were diagnosed had you ever even heard of IC? Not me!!  In your letter, explain your pain or your biggest struggle in as much detail as you can. My biggest symptoms were pain and lack of energy.  I tried to give my loved ones a glimpse into my daily struggles. I tried to convey how much I suffered even if I did the easiest of house chores. I tried to help them understand what a struggle it was to just take a bath and wash my hair daily.  I hope they understood that even the smallest of tasks drained me of my daily energy.  I had to pace myself more and I had to give up some things that were precious to me.

You also may want to ask them to go with you to your medical appointments. In the beginning I asked my husband to go to my doctor appointments with me.  Mainly to help me remember what the doctor said because of the medicated fog that I was is, but also for moral support. If the doctor was suggesting a procedure that I had read about, but my husband was not familiar with, I asked the doctor to explain it to him.  Sometimes it helps if your loved one hears from a doctor just what all you are going through.  He still goes today, if I need him to,when I go out of town.  We make it more of a "day trip" than anything.  We both love to travel and then we will eat together after my appointment.  

I also bought a book entitled "Please Understand: The Interstitial Cystitis Guide For Partners"  I read this book first and then asked my husband to read it. This book, written by couples familiar with the challenges of IC, is an invaluable resource for individuals and couples alike. I ordered it from Amazon and it was not very expensive.

I also talk about everyone on my facebook support page and I call them by name or state.  They are real people.  They have real problems. They are a priceless resource for me and my daily struggles.

People with IC have real pains,depression and moodiness.  The stress alone of not being able to do the things you need to do or things you want to is such a burden to us.  We all need a support system.  We need to reach out to others, educate others and ask for a hand when we need it.

It is up to us to educate others about what we are going through.  It is up to us to ask for help when we need it.  It is not always easy, but necessary for now. 

If you are having trouble trying to make your loved ones understand what you are going through ask them to read my blog or maybe a magazine article or a webpage describing Interstitial Cystitis.  IC is not easy for us as the patient, but it is not easy for our loved ones either.  Let's try to remember that as we go through this new year.  Let's do things for our loved ones that we know they will appreciate.  Let us all give "The Gift of Love" 

"Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away."   1 Corinthians 13:4-8
Let me know your creative ideas of reaching out to your loved ones by leaving your comments below.
Please see below for a peak at the mirror.

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I want to dedicate this song to my husband...Alan, I need you to love me now and forever!
P.S. You are still stingy with the chips!!!

                            Barlowgirl "I Need You To Love Me"

The Mirror