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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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