3rd part of my IC story~

Looking for Answers in all the Wrong Places

           

I’d like to share with you now the part of my IC story which focuses on the path I took to finally receive a diagnosis.  Believing in my pain, understanding that what I was feeling was a legitimate issue, and preparing what I was to say to the healthcare professionals were the first steps.  Earlier I had received a referral to a urogynecologist at a hospital in Boston with a good reputation.  I was happy that Don could come with me, but I was still scared of what they would tell me.  My fear was that I would leave the hospital with no answers; but Don told me that I couldn’t have that attitude.  So I did my best to walk in with my head held high, knowing that God was going before me.  I can still feel those feelings of anxiety which I had wrestled with two years ago – two very long years ago - as if it were yesterday.  I know some of you are at this point in your journey towards understanding your conditions and this disease.  Others are not as far, and still others are much farther than this. You’ve had this monster – this knowledge of the disease within you - for years now, and you feel the weariness of the battle.  No matter what portion of the journey in which you find yourself, hope exists for you.

Presently, I’m thinking about how I felt during those tense moments before I met with the doctor, all the emotions that flooded my mind.  Even today a hospital atmosphere brings back so many memories – the fear, the looming threat of terrible news.  Do you feel afraid as I did?   Are your praying for a definite answer this time around?  I sure was.  Take a deep breath, take a loved-one’s hand, and know that you are not alone.

We sat anxiously in the waiting room.  I could not stay relaxed.  My mind entertained every type of thought and every possibility.  Then Don squeezed my hand in his.  I needed that.  When they finally called my name, we sat down and told the doctor my entire story - every detail, how intense the pain was, how frustrated we felt.  We talked for about 2 hours.   The doctor was so kind, so sincere.  I knew she cared.  Having set up dates for follow up appointments, she paused and looked straight at me.  I will never forget what she told me.  “Natalie,” she began, “now I’ve done a lot of extensive surgeries.  But you scar very badly.  If we were to just go in and do an exploratory surgery, I would have to gather my most competent colleagues to help, due to the risk and severity of the surgery.  Even an exploratory surgery could result in your bleeding to death.  I’m not trying to scare you, I’m being honest with you.   I will not go in and do exploratory surgery when we don’t know what were up against.  But, I truly believe that WE CAN HELP YOU.  Her words rang true and I felt my heart relax.  I had been waiting for those words, we can help.  She told me there would be some tests that they would need to do, and that the process would continue from there.  I thanked her and I felt a tear roll down my face.

The next appointment was soon upon me, but again Don was right there beside me.   We were sat before another desk, and this time it was a male doctor on the other side.  The technicians had just finished my blood work and the tests were sitting there in front of us.  “We believe you have what is called interstitial cystitis,” the doctor said.  “It’s a disease of the bladder, a very painful disease.”  Don and I exchanged glances, the same questions running through both our heads.  What is that?  What does it mean? And of course the question we all ask… Is there a cure?  He then went on to explain to me what a life with IC would mean - unbearable pain, urgency, a frequent need for the bathroom, and a whole list of other potential symptoms or complications. 

He then described to me a sensitivity test which I would have to endure; a test where solutions would be injected into my bladder in order to determine how the mixtures would react.  I asked him if the test would hurt.  He told me no, but that it might just be uncomfortable.  The entire test took about 45 minutes.  Of course I had to schedule another follow up to find out the results and discuss in detail what the results meant for me as far as treatments were concerned. 

Don and I left in silence, but I knew we both had so many questions.  And I knew the same one played over in each of our minds: Is it true that there is no cure?  I tried to be strong, but you can only be strong for so long.  I grabbed Don’s hand and asked, “Is this ever going to end?   I’m not sure if I’m strong enough to take this on.”  Not that I had choice.  But, Don told me that we were going to get through this together, and that's all it took to make me smile. 

Despite Don’s reassurance, a cloud still hung over us.  How will this change our lives? Then I thought of how many other individuals, how many couples are receiving the same news?  But even in the face of those ambiguous times - even in the midst of this chaos – we knew that Jesus was there in the middle of it with us, and He would be there for every other soul coping with such news.  His comfort we could not deny, His presence was there.  Ten long years of pain, of unanswered questions, of doctors’ appointments - was this finally coming to an end?  I could have sat back and just given up, but I knew I had to fight, harder than I had ever fought before.  I had been through so much already.  This test could become my testimony! 

                     This disease has made me want to be an advocate for IC awareness.  I’m becoming a voice.  I’m letting go and letting God use my talent and passion for writing to encourage and inspire you on this very difficult journey.  I hope you can relate.  This is not just for me.  It’s for every IC'er out there, every parent, spouse, daughter, son, and best friend; for anyone who needs or wants to be educated, supported, and understood.  I’ve felt at times that I was weak – too weak.  But God uses the weak to lead the strong. I am gaining my strength from CHRIST, and with Him all things are possible.  Here is a quote I love, (not one of my one).

Life is about hanging on when your heart’s had enough, and giving more, when you want to give up.(quote not by ME)

I know we tend to be are harder on ourselves than others, and I know you guys are strong. You’re fighting a battle that some of the physically strongest could not stand up against.  I’ve heard a lot of your stories, while others I have not yet heard.  But I do know this, you have a story.  Each IC sister or brother I’ve met online has touched me personally in a deep profound way.  We each have a voice - a voice that can touch another.  And with these united voices, we can have a ripple effect, influencing, educating, and supporting an ever-widening circle of listeners. 

To close, I am reminded of the story of the boy and the star fish.  A man is walking along the beach and spots a young boy throwing starfish into the ocean.  The man notes the great number of washed-up starfish and asks the young man, “How can you possibly make a difference?”  

The boy looks at the starfish in his hand, then back up at the man. “It’s making a difference for this one.”

                     WE may NOT have IT all TOGETHER, but TOGETHER we HAVE it ALL~