The Drawing Board

a journey in chronic pain

Mary Ann Farley

Mary Ann Farley
Location
Hoboken, New Jersey, USA
Birthday
January 18
Company
www.maryannfarley.com
Bio
In 1999, at the very same time I was diagnosed with a serious blood clotting disorder (Essential Thrombocythemia), I also felt my face explode in a type of pain that no one could explain. After 13 months, I finally learned that it was osteonecrosis of the jaw (also known as NICO), a complication of the blood/bone marrow illness. I've had untold numbers of surgeries during this time, having spent most of it in pain. In 2004, the blood condition caused an internal massive hemmorhage during which I lost 70% of my blood volume, which in turn made the jaw infection much worse. This blog will detail my journey with chronic pain and all of its accompanying complications and emotions. I'll try to be as honest as possible without shooting myself.

Mary Ann Farley's Links

Salon.com
MARCH 14, 2009 3:32PM

Chaos Theory

Rate: 6 Flag
I have a piece of paper taped to my wall next to my drawing desk, on which I long ago scribbled the definition of chaos theory: "The more complex the pattern, the simpler the underlying reality."

I heard it on TV once, and I read it often, as science and the human condition always seem to be so relative. Truth is truth, whether it be a mathematical formula or a divine insight. I find comfort in this definition of chaos theory these days, because deep in my soul, I do feel that there is an underlying truth in all this pain, and it's my job to figure it out.

Of course, I'm sick to death of trying to figure it out, and often come to the conclusion that I'm just unlucky--that there's no grand design to all this--I'm just a single human who drew the low card and nothing will change until I get a lucky break--when I'll find the right treatment or the right doctor who will help me get well. And that'll be that. No divine involvement whatsoever.

But then another one of those strange interventions happened again the other day, which challenges my notions of nothingness. I've talked about them in previous posts, where I'll get a strong premonition or warning that alerts me to danger and alters my behavior to the extent that I actually avoid disaster.

Here's what happened this time: Every day I get a digest post from the online blood support group I joined years ago. I read it faithfully for years, but as the posts tend to get repetitive, I haven't opened or read any of them in a good six months or more.

Last week, though, something made me open the email, and in the list of topics was a warning about a drug that I'd been taking for nausea--Reglan. It said that new studies had shown that Reglan can cause permanent damage to the nervous system when taken in high doses or over a long period of time, the latter of which applied to me.

As the drug cocktail I take every day can sometimes bring on nausea, I was taking Reglan every morning whether I had nausea or not, just as a precaution, so that I didn't find myself out and about somewhere and suddenly need to vomit.

Yet when I read this warning post, I was shocked at the damage Reglan can do, and immediately stopped taking it.

Later, I thought it extraordinary that of all the posts to open during the last six months, that was the one I chose, and once again, I felt like something "other" had intervened. I suppose I could just call it a coincidence, but when similar coincidences happen over and over, a pattern emerges that challenges logic.

I feel like there is something out there keeping me alive, which frankly feels somewhat cruel, considering the state I'm in. In the last few weeks, the pain level has skyrocketed to the extent that it's there when I go to bed and there when I wake up. My despondency feels like a ten-ton weight, and thoughts do cross my mind lately that I could always just end things. I do have that choice, and I know things are bad when I begin considering such a move as an option.

I love life so much though, and then I think of my little nieces who adore me (and who I love more than words could describe), who would be left without their nutty aunt for the rest of their lives. And so I hold on. These "interventions" are keeping me around for some reason, and I'm trying to have faith in that.

I'm still swirling in a state of chaos, though, trying to believe that there is a simple underlying truth to it all that will set me free, as truth always does.

But my energy is fading, to the extent that I've completely lost my appetite. When eating feels like a monumental task, the other things I know I must do to try and get well feel like lifting cement boulders.

It's time to reach out for help. Friends have offered assistance constantly, and I know they mean it, but I suppose it's tough for me to admit that I'm actually this weak right now, and that I can no longer do this alone.

I don't know that that particular truth is the simple one that can explain all this chaos, but it's the truth today. Time to make some phone calls.


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Comments

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I also take a large cocktail of drugs every day. The warning labels on each of them is long enough to be considered a small novel. I just close my eyes and hope for the best. Somewhere though, some prick is having cocktails at the country club whose company payed off a congressman to push all of these dangerous drugs through the screening process. We can all only hope there is divine retribution.
Good luck.
maryann, i see that this was written weeks ago but i've just seen it for the first time and i'm left wondering how you are...? i hope you are well and have found some relief and peace.