My Life With Fibromyalgia

I woke up this morning, another day with Fibromyalgia. And to tell you the truth, I was feeling sort of sorry for myself. It is very tiring living with this chronic illness every single day.  The pain is excruciating. I have chosen only to take pain killers when I absolutely need to and dont take regular meds because of the side effects.  I practice yoga and meditation instead. I have a meditation room that I have dedicated to my healing.

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My meditation/yoga room

Getting back to what it is like living with fibromyalgia.  When you have pain all the time, you can get pretty depressed and sometimes anxious , and oh it affects your sleep too. Stress makes it worse and  if you’re not careful, you can end up in a tail spin going downward and end up in bded for several days. Like I said, it can get depressing. So, I was having one of those depressing mornings today, I was even crying. I decided to write about it , and here I am. I was going to write how horrible I feel all the time, when I was diagnosed, etc..It was going to be all about me and my fibromyalgia  I opened up my computer and for some reason I started reading a few of the many impact statements I received from some really sick people in Tonawanda and Grand Island, NY.  I read this one statement of a woman living on the eastern portion of Grand Island, NY. She lives right across the river from Tonawanda Coke Corp.

“The carcinogens released in the air by Tonawanda Coke may have contributed to the death of my two children and health issues for another child.  My son diagnosed at age 5 died at age 6 from Non-Hodgkin’s Burkitt’s Lymphoma – lived near the study area. My Daughter diagnosed at age 21 died at age 27 from Glioblastoma- a brain cancer – lived in the study area. My other daughter born in 1993 is being treated for debilitating headaches – lived in the study area. Loosing a child was the most painful life event I could possibly imagine. Yet it was inconceivable that it could happen a second time.  But it did. I keep thinking ….how could this have happened???? I may never know that answer. However, I would have done anything in this world to protect them including not living near a company that polluted the air with carcinogens – had I known.This is a life sentence for me and certainly my 2 children and the families they might have had if they had survived.”

I can’t even imagine what this must be like loosing two children!  I have two teenage boys and this is inconceivable for me. As I read this woman’s story, the pain of my fibromyalgia seemed almost insignificant to the pain this woman must go through every single day of her life.  The grief and guilt she must feel while wondering if she had chosen not to live near Tonawanda Coke, her children may be alive today.  This is true pain.

When I realized how Tonawanda Coke has affected so many people in our community and all the pain and suffering, my pain seemed pale in comparison. Gaining perspective literally made my issues subside.   I physically didn’t feel so bad anymore. I am serious. What happened?  When I realized I was a part of something bigger, I felt better.

We cant turn back the hands of time and bring back all of the lives that have been lost and remove all of our sickness. But, I can accept  the everyday challenge of getting out of bed and living with this illness knowing that despite of my illness and because of it, I made this world better.  If it wasn’t for the fibromyalgia, my neighbors and I would have never taken that bucket sample of air that led to holding this company accountable..  All the good we did to make our community a better and cleaner place to live, would  not have happened.  There was truly something especially good that came out of my illness.

Remembering this, allows me to accept my pain.  Now, I can get out of bed and start my day.


Thank Judge for Punishing Deadly Polluter – Tonawanda Coke Sentenced $24 Million

“It sends a message loud and clear to industries not only in Tonawanda, but across the country.”

After years of hard work, on March 19th, 2014 our community sighed a bit of relief after Judge Skretny sentenced Tonawanda Coke and its environmental control manager, Mark Kamholtz,  at the Federal Courthouse in downtown Buffalo.

Tonawanda Coke was found guilty in March 2013 of breaking 14 federal laws under the Clean Air Act and the Resource Conservation and Recovery Act. Mr. Kamholz was found guilty on the same counts and on an additional count of obstruction of justice.

Although the maximum sentence was not imposed against Tonawanda Coke, Judge Skretny forced the company to fund two environmental community studies totally $12.2 million!! His decision was historical and also included $12.5 million in fines for violating the Clean Air Act and Resource Conservation and Recovery Act. This is one of the largest fines ever levied in an air pollution case involving a federal criminal trial.  

Judge Skretny’s decision also included sending Mr Kamholz to jail for one year and a day plus a $20,000 fine!

“People living and working in the Tonawanda community were exposed to toxic coke oven emissions that may have serious effects on their health and I commend the hard-working residents who have stood up to a major local polluter,” said Judith A. Enck, U.S. Environmental Protection Agency Regional Administrator. 

And what is the message Judge Skretny is sending to all those other industrial polluters that try to put profits ahead of people?  To continuously poison a community and try to cover it up, is unacceptable.

Please take a moment to thank Judge Skretny for sending this message loud and clear by signing this petition letter:  Judge for Punishing Deadly Polluter – ForceChange.