Friday, April 27, 2012

Could I Have A Magic Pill, Please?

My first appointment with Dr. Carmen Gota at The Cleveland Clinic was February 1st.  She told me she'd see me back again in 3 months, so when I went to leave I told that to the lady at the desk.  She told me that they don't schedule your appointments while you're there, that I'd receive a letter in the mail telling me the date/time.  I waited and waited and still hadn't received an appointment letter.

Last week, I called the office and told them that I hadn't received an appointment letter yet, when my 1st appointment had been, and that she'd wanted to see me again in 3 months.  The lady I spoke with took my phone number, and said she'd check into it.  I still hadn't received a call back, so I called again.  I spoke with the same lady that I spoke with last week.  She told me that they did have me scheduled and that my appointment is May 10th. 

I started reflecting back on the past three months.  How so much has changed in 3 short months.  90 days.  In that 90 period my life has been turned completely upside down.  February 1st on the way home from the appointment my husband was telling me that I'd never be alone.  I'd always have him even when our children were grown and long gone.  I was told how WE'd face all of my diagnoses together.  We were comfortable enough with money that we stopped and had a nice meal on the way home.  I had a son who was in the last stretch to graduate from school. 

Now, I'm separated from my husband facing a divorce.  My son that's a high school senior is married with a baby on the way.  I'm so broke that I'm not sure how to even have the gas money to GET to my appointment.  -Don't get me wrong, my father will take me and not take a penny for gas but he's 73 years old.  I'm 41.  I absolutely *hate* depending on him, and taking from him.  It's a long drive from where I live, and he lives 30 minutes farther away from me. 

I'll be honest, I don't really know why they even schedule you for 3 month appointments.  It doesn't seem like there's anything more they can do for me, so I don't really see the point.  It'd be nice if I went in there, and told them my symptoms are even worse..all of them...pain, depression, insomnia, etc and they could do a med switch that would actually help.  I'm certainly not hopeful though. 

We need more research into Fibromyalgia.  Scientists need to find out how this beast really works.  If they can figure that out, then maybe a cure would follow.  I've never been a pill taker.  I've always hated medicine.  I even have never liked to take a Tylenol.  How ironic that at this point in my life, I now dream of a doctor handing me a magic pill I could take that would make me feel like a real, living person again.  I'd gladly gobble it down every day.  A pill that would take away all of my pain from fibro and arthritis.  Take away the pain of the bone spurs.  The pain of the tarlov cysts.  A pill, that would take away my insomnia and my depression.  -And let me tell ya, I can honestly admit that I really am depressed now.  The last 3 weeks have about killed me.

People afflicted with fibromyalgia need to start banding together and demanding that more research is conducted.  We need to be ONE voice, that's heard all the way to the White House.  We need to gain backing of large industries and pharmaceutical companies.  How many organizations are out there for just about any other illness?  Most have dozens.  Sadly, a lot of people haven't even heard of fibromyalgia.  Those who have, are usually misinformed and think it's nothing but hog wash.  These misconceptions need to be dismissed.  People need to understand.  If scientists and doctors can't fully understand it though, how can we expect common people to?  Every one of us need to advocate for research and cure.  We need to advocate to educate the general population.  I'd LOVE to be able to book seminars at every med school across the United States.  I'd love to present a seminar "Fibromyalgia - A Patient's View" to every med student across the country.  They need to hear how fibro truly affects and limits us, in our quality of life.  They can read about it from a book all they want.  Until they really sit and listen to how it truly affects us, they'll never get it even a little bit.

I know that my "magic pill" won't be dispensed to me on May 10th.  My hope though, is that someday it will be dispensed.  To me, to you, to anyone and everyone that lives the daily struggle of fibromyalgia and chronic pain.  I'm still trying to figure out the "how's" of educating and advocacy of chronic pain, but when I die, I know I'll have died trying my best to get the word out there.  My kids are pretty well all grown, my youngest is 16 years old.  I don't have a husband now.  I really don't have much of a life, in general.  What I do have though, is a voice.  I have experience.  Experience living the daily struggles of chronic pain.  With my voice, I demand to somehow be heard.


  1. Good for you! Keep your voice as loud as you can! Be strong! Have faith, it will keep you going when you think you cannot go anymore.
    For me, it seemed like when all was about to hit the fan, a miracle happened. God takes care of us but it aint no picnic while we live here.
    (Truck repoed with camper on it that we were living in) could have left us on the street with absolutely nothing ...
    But at the final minute we were blessed with a 29 ft camper to live in...looking back it was a miracle!
    They do happen. Keep the faith, ask God for help in your situation.

  2. I so wish I could give you a magic pill to make it all better.

    My fave saying.....that which does not kill us,makes us stronger.

    Hang in there hon.