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
AUGUST 6, 2009 2:35PM

When Love Is Enough

Rate: 28 Flag

I awoke this morning with an aching emptiness, as I knew this was a day that I was going to take a much harder look at myself, without the crutch of abusive substances.

What's been a little disturbing lately is my glass of wine in late afternoon, after my day is pretty much done. It's never been a problem, nor even a daily habit, but I've noticed this past week or so that the time I pour it has been inching up by a half-hour or so, and yesterday I poured a small amount at about 2:30 p.m. instead of my usual 4 p.m. or after.

While my intake has remained the same, this earlier start is scaring me, as it should, and when I went to sleep last night, I promised myself that today, no matter how well I'd be able to resist the clutches of pain medication, smoking and now wine, I would at least take a hard look at my feelings, and the best mirrors I've got are my private journal and this blog.

What's so interesting about these promises we make to ourselves is that most of the time they're half-hearted, something we say to make ourselves feel better for the moment, but never really put into action. But then there are those occasions when we know we mean it, and that's when life can get scary indeed.

Even before I began journal writing today, my anxiety level was up, almost as a type of wall to prevent me from this little trip into the unknown. But I stuck to my guns, made a cup of coffee, watched the last few minutes of a Sopranos rerun (no matter how bad things are, I have to see what Tony is up to), did not light up a smoke, and began writing.

I wish I could say that some startling insight was uncovered, but instead, what became as plain as day was that the pain in my jaw is still holding on with a fierce grip, and I literally felt sadness wash over me like a wave.

Somehow, in recent months, I've been distracted from the pain by family drama, by new freelance writing assignments, by trips to the shore to help my parents, and, of course, by pain medication.

When I told my doctor last week that I was taking way too much Vicodin, he switched me to MSContin, which is morphine sulphate in pill form. While that may somehow sound more dangerous in terms of addiction, for me it's a better choice in that I actually take less medication yet get better pain control. And I don't get the mood lift I was getting from the Vicodin, which, to be honest, is something I've come to miss.

With MSContin, the medication is released slowly over the course of 8 hours, so there's no rush, and therefore no quick and easy escape from the pain and sadness of my condition.

When I just sat with my feelings this morning, not having any deadlines looming or any particular place to be, there was a stillness there, a lack of motivation of any kind, which was in such stark contrast to just yesterday morning, when I felt like I had the world on a string, making all kinds of plans for a type of playday as a reward for meeting a big deadline--first to ride my bike, then to paint at my studio.

Those plans changed, of course, when I took that first sip of wine at 2:30, and interest in anything else simply and quickly waned. I cursed my behavior, vowing to do better today, and indeed I have. I've had one dose of medication and one cigarette, and it's now nearing 2 p.m. And I've made plans to meet a friend in about a half-hour.

But the pain in my face has me reaching--that feeling of wanting to grab something, anything, that will make me feel better, that will quell the loneliness that comes with chronic pain and constant disappointment.

At this particular moment, I suppose I need to just have faith, not in God, per se, but in the realization that in resisting the reach, I will feel better overall--maybe not now, but perhaps tomorrow, or the next day. That's hard to see in the moments of deep sorrow or wrenching pain, or in the throes of an addiction spell. When the latter occurs, it feels like every cell in my body is screaming for relief, and turning a deaf ear for the five minutes or so it takes for a craving to pass can feel like a lifetime.

I talked to a friend about faith earlier today, and I can see that I haven't lost it--it's just changed shape. When I pray now, I don't use the word God anymore, as it's attached to just too much baggage from my Catholic upbringing.

I pray to the "Universal Spirit" instead, which when I shorten it to the letters "U" and "S," spells "us." And that's something I can get with indeed.

All this misery has made me feel the love of others and within myself in ways I never have before, and as I said to my friend this morning, in terms of faith, love is enough. I don't need to pray to some great being in the sky, but I do need to pray to whatever the mysterious source is of all this deep compassion. When I pray to this universal spirit of love, I feel it, and I feel it for me in particular.

That's new.


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MSContin is a wise choice for those with chronic pain as studies and patient reports indicate great pain relief without the euphoria that opiates seduce with. As for drinking wine? Faith is never lost, sometimes it just procrastinates within the psyche. Continued wishes for wellness. rAted!
Mary Ann, I'm so sorry that you are going through such adversity. I suffer from chronic pain too, but nothing like what you describe here. You have my prayers that things will get better for you. I love your assignation of God as "US". What a beautiful way to describe such a spiritual relationship.
As Mr. Mustard says, Oxy is the way to go. I also am on a time-release drug, but I have to use the percs for break through pain. My right arm is now in a sling, which is hell to type with. But, I am more proud of you for the smoking. I've taken every drug known to man at one time or another, but nicotine is the worst. The people who have this world hooked on this drug should and will burn in hell. Oh, the people they have killed would make Hitler a bicycle thief. I'm down to 1/2 a pack a day, and that is a struggle. I hope we both kill our demons. Luck!
I'm guessing it really does have to happen a day, even an hour, at a time. And when you're trying to NOT do something, it's like it's all you can think about -- whether it's meds, food, alcohol, whatever.

This is beautifully written! You are very eloquent in your description of pain & how demanding it is & how tough it is to wait it out instead of reaching for relief.

My mother suffered horrific chronic pain & her own health was pretty much destroyed as she constantly tried to relieve the pain with every drug known to man. She just (rightfully) wanted it to stop! & sometimes the pills would help for awhile, but then she'd just need more & more all the time. The only time she ever had relief was when she was deeply involved in her work, & then her brain was so focused on what she was doing, maybe the pain couldn't get in. But as soon as work was done, it was waiting & so were the pills.

In the long run, you're doing what's best for your body, & you seem to have a real awareness of the direction you need to be heading towards. You can beat the pain monster. I wish you faith & love.
Mr. Mustard (Chuck)--Thanks for your comments about MSContin. I thought this was my unique experience; didn't know that others didn't get euphoria either.

Onecorgilover--I didn't know you were in chronic pain as well. It's a bitch, ain't it? Thank you for such sweet thoughts.

And Scanner...I'm not on Oxy now, instead MSContin. Oxy DID give me an opiate lift, but MSContin doesn't, which is a mixed blessing. lol! I don't think I could have Percs in my possession, as I'm pretty sure I'd abuse them. And as for the cigs, I'm doing less than a half a pack a day, but I shouldn't be doing them at all. I have a blood clotting disorder, fer chrissakes! Talke about Russian Roulette. :)
Suzie--Yes, being engrossed in work of any kind does help the pain. The best work is of the creative kind, but one can't be creating day in and day out. But I suppose I can try. :)

I'm so sorry to hear about your mom. It's a scary story. Pain medication, while so often necessary, does come with a price. How I wish I could somehow handle pain mentally, without the meds. Maybe someday.

Thank you for such loving thoughts.
As Mustard said, I wish you well and thanks for sharing your feelings on this journey. Wonderfully and beautifully written.
Rated
Best best best to you on your journey of self-discovery and spirituality. I pray for the physical pain to be lifted...
I know this is a difficult time for you. The challenges you face cannot be overcome in a single stroke -- only with constant effort and attention. The road to recovery has begun. May your journey be successful and your burden light. We're rooting for you.
You have helped me today. My husband has been struggling with acute pain every day for around two months now, a new challenge for both of us. He talks about the pain medications in much the same way as you - how much, what time, the effects, the wait. You have given me some deeper insight into the emotional toil behind that regimen, and I really needed that insight.

I like that term - praying to US - and think it is a lovely gesture of grace to extend this compassion to yourself. You absolutely deserve it, and I think that lesson itself may be one of the most important we are here on earth to learn. Peace my friend.
Saying a prayer for you (somehow it does work) and a big ((hug)).
BEAUTIFUL WRITING!
What you are going through would try anyone.
You should be incredibly proud of yourself that you have done so well!
I pray to the "Universal Spirit" instead, which when I shorten it to the letters "U" and "S," spells "us." And that's something I can get with indeed.

I really like this and think it's a far more effective than praying to an old guy in the sky. It's far less guilt ridden which makes it more positive which usually will get positive results. IMHO.
Sounds like you are doing quite well considering all of the tribulations you've been through lately. Don't be too hard on yourself. None of can live up to our expectations. When that is finally realized, relief can usually be found (Maybe not for chronic pain, but for other areas of your life). Trying to be perfect often leads to disappointment. Accepting oneself, faults and all, leads to an enlightenment of sorts.
I shouldn't be giving any advice, really. I'm a screwed up as anyone. These are just thoughts that have helped me along the way.
As a "recovering smoker" (I've been cigarette-free for nearly 29 months now, but I can't bring myself to call myself a "former smoker" yet. Maybe I have too much respect for nicotine and the grip it exerts), I'd like to share with you my strategy and hope that it (or the variation that works best for you) will be beneficial.

When I gave up smoking, I decided that telling myself I would "never" do something again was only setting myself up for failure. "Never," after all, is a long time.

So I set short-term goals for myself. When I got up in the morning, I told myself I wouldn't smoke before lunch. Then, when I made it to lunch, I told myself I wouldn't smoke before dinner. Then, when I achieved that goal, I told myself I wouldn't smoke before going to bed.

The next day, I repeated the process.

When I started, I wanted to see how long I could keep the streak alive. Well, it has been 876 days now, by my count. I figure to reach the 1,000-day mark a few days before my father's 80th birthday.

It hasn't been easy. There were a lot of things I wasn't prepared for, and I still have cravings from time to time.

But I've learned that you can't free yourself of tobacco until you get the nicotine completely out of your system. The patch helped me at first, but I had to stop relying on it because it was keeping a certain amount of nicotine circulating in my system.

I wish you success.
Mary Ann,

Your writing is beautiful. I find it so oxymoronic that what we most struggle with, whatever it may be, we have to pay attention to. We have to pay attention to how we feel when we are letting go of an addiction, when in fact the addiction is what we don't want to think about! Because it seems that thinking about the drug, or cig, or drink, or fill in blank, is what got us to this problematic point!
When in fact I think it's just the opposite. For me, NOT THINKING got me to this point. NOT thinking through got me to this body I am not comfortable with, not being aware and present in my life got me to the place where now I am aware, and I must divorce the man I wasn't suited to. I could keep going, but it was not being aware that let us slip mindlessly to our places in life. Thank you for your conciousness in writing. It is spring air.
Hi, Mary Ann. I continue pray for your release from pain and from any addiction. I really don't think God cares at all what name you use when you pray. I am glad that you can still do it. When I get in trouble spiritually is when I start praying to ME. But I usually figure that out sooner than later. I haven't been able to solve most of the problems that I have had without help, from others, and from a "Higher Power," however described. I wish you wellness, wholeness and happiness.

Monte
Mary,
Thanks for the inbox reminder! I truly love your writing and details of your life that you document in this online forum.

I really resonated with your words here: "All this misery has made me feel the love of others and within myself in ways I never have before..." They reminded me of something my seminary professor told me back in 2006. He observed that his divorce from his wife of long years and the death of his parents had rendered his heart far more tender, sensitive and aware of the struggles of others. The experiences helped him to step outside of himself. To be clear, I'm not saying that all pain and suffering has some sort of divine or redemptive purpose, but I do think there are creative and compassionate ways that we can find meaning in response to the shit that happens. Thank you for sharing that thought.

Also, I liked where you say, "...in terms of faith, love is enough. I don't need to pray to some great being in the sky, but I do need to pray to whatever the mysterious source is of all this deep compassion. When I pray to this universal spirit of love, I feel it, and I feel it for me in particular." I too seek to commune with that "mysterious source...of all this deep compassion" and I thoroughly enjoy reading your journeys to explore it in your own life.

Best!
Thank you so much Kind of Blue, Robin, Steve, Grif and Kathy. You're encouraging words are much appreciated...and needed!

Annette--I'm sorry to hear your husband is in acute pain. While two months is certainly a long time to be in agony, since it's acute, it sounds like it will end, and that is a blessing indeed. When you can look ahead with hope--that this, too, shall pass--it can really help on those difficult days. My thoughts are with you.
Michael--I have indeed felt a difference praying more to an abstract spirit than to the great being I was taught as a child--the bearded man who dispensed mercy at his will. Praying to a spirit of love has been a real eye-opener for me. Thank you for adding to that concept.

And David--Thank you for the anti-smoking tips! I'm finding that that approach works for any type of cravings, although I can't say I'm totally successful yet. Right now, smoking gives me some type of satisfaction beyond nicotine, but I do find that if I just ride out the craving for a few minutes, it does pass to the extent that I don't even want it anymore. The desire is gone. Thank you for reminding me of this.

Annimal--Holy cow. I've had to reread your post a few times. There's some real jewels in there. I would love for you to expand on these thoughts in a post, if you're so inclined. If you do, please be sure to alert me to it! Just beautiful. Thank you.
Monte--I so appreciate your prayers. I haven't forgotten what you said awhile ago, about how you keep me personally in your prayers. That really touched me. Your thoughts here are wonderful, as usual. I agree we can't do everything on our own, and I think that's been the biggest lesson for me in this ordeal. My childhood taught me to ask for nothing and expect nothing. No wonder I got sick.

Church--You're so right. Even if there isn't inherent meaning to the events in our lives, either good or bad, we can GIVE those events meaning, and one of the best things I ever did since I became ill was start this blog. Connecting with people like yourself makes me feel so much less along, and I pray that my writing does the same for others. Thank you for such a thoughtful response.
I too struggle with nicotine. No chronic pain, but I have to admit that I enjoy hydros when I can get them. Life is tough and sometimes I just want to check out. Not admirable, but true.

Good luck to us all,

rated
Is "medical marijuana" a suitable alternative to your current med.s?
A very good article, and well wishes as well from me to you.

Rated.
I am grateful for your great source of compassion and for what you produce and give to others. I am also glad for the steps you take and for your brave self-monitoring. I need more of this myself. :)
It's a brighter place with you here.
Deep truth and wonderful view:

"When I pray to this universal spirit of love, I feel it, and I feel it for me in particular.

That's new."

peece,
dj
Zimi--Yes, Vicodin is an alluring beast indeed. As is the damn nicotine!

Willie--I tried marijuana for awhile, and while it did ease the stress of living with chronic pain, it erased all motivation to do ANYTHING. And that feeling lasted long after the high passed. Not a good choice for me, but thanks for the suggestion.

And Tinker, Delia and Jimenace--thank you for such kind comments. You've brightened my day today. All of you have.
I also pray to the Universal Spirit. I pray now for you to be well.... You describe your pain so beautifully... I have doubts I could do the same.
I enjoyed reading this. Take care of yourself.
OMG!!! i can totally relate. finally! someone i can relate to!! i will totally be a constant reader of yours!!