But Did You Listen

Whoo hoo!  We are finally having cooler weather!  The weather person predicts that the change is temporary, lasting only until the end of this weekend, yet after three and a half months of blistering 100 degree fahrenheit temperatures with sixty percent humidity; I’m enjoying every moment of our 63 degree low humidity bliss.

I was surprised when I woke up this morning shivering.  Usually I wake up simply because it’s too hot to stay in bed comfortably (or I have to go wee). What a great feeling!  It seems like there’s a special smell of the heater warming up in the car that accompanies this type of weather.

I’ve had a particularly brutal last few days.  The kind of attack where I can’t walk well, and have trouble sitting or standing for more than few minutes at a time.  It creates an uneasy restlessness.  I get so cranky.  I start feeling sorry for myself and crying all the time.  I start to lose hope that I’ll ever feel better.  I Eeyore all over myself.

Right after I woke up, I received a phone call from a person in my IC group.  Our next meeting is coming up, and she wanted to relay the information to me.  I thanked her and was getting ready to hang up when she jumped in with a “How are you today?  How’s your IC?”

I had to think about it.  Then I went for honesty.  She has this too, right?  She’ll understand.  “Well, I feel horrible.  I’m managing okay, but I’m miserable.  How are you?”

She paused, then told me that she is really struggling.  She was just diagnosed about six months ago and isn’t coping so well; her husband doesn’t get it, her young son wishes she would have a magic pill.  She’s thought of killing herself.  I reassured her that I went through the same thing; I told her she shouldn’t feel guilty for thinking those thoughts – I’ve been there.  Sadly being diagnosed with IC is life changing.  We need a chance to mourn.  She started crying and my heart broke for her.

“How are you managing it?” she asked.  I explained my treatments at home, TENS unit and medications.  We discovered we share a urologist.  She was upset that the Doc hadn’t given her the option to do treatments at home.  I told her what to say to the Doc, and how to keep a pain diary and records of the things discussed at her appointments.  We had a wonderful conversation.  I was very impressed with her open attitude and suddenly remembered why my support group is so important to me.  We all need to make contact with people who can understand our special kind of hell.

I was right where she was at the sixth month mark of my diagnoses; I was that scared angry person.  She praised my coping skills and upbeat attitude.  I told her that my road has been long, and that I had the benefit of having my sister go through a scary illness with me.  When I was six months diagnosed, I was terrified.  Everything made sense about my body, but the helplessness and the lack of cure was devastating.  It’s taken years to get to the place I am.  In the end we exchanged email addresses.

As everyone who knows me knows, I love Tori Amos.  She helps me through so many complex moments in my life; singing in awareness and hope.  I decided that I would share her with this poor despondent woman.  Just as a note, I really don’t take lightly sharing my Tori music.  It’s like handing someone a piece of my soul.  If they don’t like it as much as I do, I almost take it personally.  So, that being said, I had thought back to when I was six months into my new IC-ness.  I listened to “Bouncing Off Clouds” over and over again.  The line, “Make it easy, easy, easy, here we go make this easy, easy Lord, easy, here we go” still makes me cry.  I would drive home from my doctors appointments shout/singing along with her while I cried.  I had to do this.  I needed it to be easy.  Please.  I would take a deep breath and remind myself that, well you can stare all day at the sky but that won’t bring her back, that won’t bring her back, you say you’re waiting on fate, but I think fate is now, I think fate is now.  Waiting on us.

The healthy me was gone and not coming back.  Being sick was not as heavy as it seemed, I eventually found a way to put on my silver.  The pain is real, the disease is real.  That song was the anthem of my IC self.  I still remember my anguish every time I hear it.

I hope she likes the song and that it can help her like it helped me.  I hope she finds the strength to come through to the other side of her illness.  Should I also send “Maybe California”?

I think talking with her was a gift in its own way.  I can look at myself differently, I had no idea I was an upbeat happy person with a good attitude about my illness.  That or I’m better at hiding the truth.

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~ by blanketgirl on October 29, 2009.

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