Category Archives: FMS

being in my body, one day at a time.

Why not chemo?

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Breast cancer? No problem. Get ’em cut off and then get radiation and chemo. You’ll do great.

But did you know that if you have fibromyalgia, you not only have a 20% higher risk of cancer but you are 80% likelier to die from that cancer?

Let’s look at the most common chemo drugs for breast cancer.

Anthracyclines: not recommended in patients with mitral valve prolapse or arrhythmia. Guess who has those?

Taxanes: not recommended in patients with arrhythmia or orthostatic hypotension. Guess who…

5-FU also not recommended in patients with heart issues. F.U. five times, OK?

Among Cytoxan’s side effects are pain, fatigue, hair loss, tingling in hands and feet and brain fog. Maybe I don’t actually have fibromyalgia; maybe I have Cytoxan.

Paraplatin is not recommended for people with a platinum allergy. How would you know?

So maybe I don’t do chemo. Maybe I just do radiation.

From macmillan.org: “Radiotherapy can change the cells lining the lungs. This can cause problems with breathlessness months or years after treatment. If you already have a chest problem, such as asthma, the symptoms can be worse.”

Guess who has asthma?

Javid Moslehi of Boston’s Dana-Farber Cancer Institute writes, “Radiation can cause not just narrowing of the arteries and heart attacks, but abnormal heart rhythms, malfunctioning heart valves and other serious issues.”

I already have abnormal heart rhythms and a malfunctioning heart valve.

I’m thinking nutritional healing is going to be my best option. I found the Annie Appleseed Project through Chris Wark’s website. I’ll be reading there from now on and maybe stop scaring myself so much.

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Scott Bennie’s Thoughts on Depression and Anxiety

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… depression is a disconnection of one’s emotions from the real world. It isn’t just melancholy or feeling down, it’s your emotional telephone dangling off the cradle while your hands are too weak and useless to put it back where it should be.

Attempting either to give pep talks or use “tough love” to people who suffer from depression rarely if ever works. If it was that easy to get people out of it, it wouldn’t be as much of a problem.

Anxiety is taking the panic button in one’s head, that impulse that tells you that you’re about to die, and holding it down. You have no idea why it’s being pressed, you feel incredibly weak and stupid and foolish that it’s being pressed, to the point where you feel useless and worthless — and it still won’t go away.

A prolonged anxiety attack is the closest thing to a living hell that I know. They’re a scream that doesn’t stop which drowns out all sounds except the panic and the accompanying feelings of worthlessness, and it’s nearly impossible to get any message through that noise until the trigger stops being pressed.

~ Scott Bennie

Precursors

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I just walked into the house after a morning drive. More on that later.

I’m having sort of a freefall of the senses; something in it very reminiscent of the one and only time I jumped out of an airplane.  Gravity and direction seem sort of vague, and I feel something that whispers both of euphoria and of panic.

I’m current on my meds and my blood pressure is probably just fine.  I am short of breath and my heart rate is rapid.  I noticed on the drive home how wretched my distance vision has become — it was kind of alarming to notice that I couldn’t read the street signs until I got right up on them.

I came across a small journal recently and found several pages outlining the symptoms of a bad fibro relapse.  It was interesting to read it while I’m essentially in a remissive phase.  There were days when I would get up and run an errand, go back to bed; get up, complete a short assignment, go back to bed.  I would sleep up to 14 hours a day and still feel tired.

People suggested I was sleeping too much.  Hell, I knew that.  I also know my body.  I know the difference between the malaise that comes from sitting around too much, which exercise will remedy.  I also know the bone-crushing exhaustion of fibromyalgia when it surfaces as chronic fatigue.

These weather precursors that I experience occur 1 to 2 hours before a front moves in.  The more dramatic the symptoms, the quicker and more violent the weather becomes.  When I was very ill I would pass out, as if from an attack of narcolepsy.

Now the precursors are less possessive, and are similar to the sensation I have when I’m approaching a channeling state.  It’s hard to describe, but it’s sort of a feeling of vertigo, a gentle pleasant humming in my head.  My sense is that I can almost touch the spirit guide that is present.

Sometimes I can channel the guide through writing or typing, but the session is always best when I’m channeling on behalf of someone else.  When they are receptive, they contribute their energy and their bandwidth, so to speak, to the communication.  And sometimes remarkable things happen.

My mission today was to pick blueberries.  The weather has been lenient of late and I practically missed the strawberry season, and blueberries just started.  So I sped off to Nesbit, only to find that there’s no picking on Sunday and Monday.  But I had a nice chat with George, stopped at the Dairy Bar for a vanilla shake and made my way home slowly up Highway 51.

The sights and sounds of the country nearly almost always sprout hope in my heart.  I see little rundown shacks and I think, I could live there.  The Capricorn in me points out that I couldn’t live there without Internet access and a lawnmower, but surely that’s manageable.

But there was something about seeing the clusters of blueberries on the bushes, thick as grapes, still green, that feels like money in my pocket.  They’re just waiting for me, just like the angels.  I just need to reach out a little.

a southern girl’s rebellion

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I feel left out.  I feel like I have to compromise who and what I am to play their game (join, join, join, no matter what the outcome). I prefer to maintain my autonomy and let my gestures be from me and not from an amorphous political group. But I feel left out.

So I’m looking at WHY I feel left out.  I’ve never been a part of that group. Never.  I’ve been wooed and solicited by them as individuals, and even by women who are not a part of the group. I suppose I took some sort of proprietary interest in the group through others.  But I am no more a part of this group of women than I am a part of my mother’s church.

So there must be a part of me that WANTS to be a part of them.  And that stuff goes back to junior high! when I was the weirdo on the outside, the girl with the strange pantyhose, too tall, too homely, too moody and too foreign to fit in with the cheerleaders, the popular girls, the ones who were always at the top of all the lists.

But such is the incubation of the artist, I think. Even then I was ahead of the curve and not afraid to express what I saw coming, in spite of the guffaws and the naysayers.  When trends eventually emerged and they remembered that I was wearing those strange hose a year ahead of them all, they looked at me with something that looked like fear.  I didn’t like that part of it, but they began to treat me differently.  They began to ask my opinion of things, and when I answered they listened.

I suppose it all comes down to trusting my instincts, believing my inner voice, the body of work I’ve done around romances gone wrong, when my instincts were derailed and my voice was silenced.  That guidance is just as strong as it ever was.  But as an addict, I constantly look for affirmation from other sources: people, food, sex, drugs, etc.

So the incubation continues.  As the Big Book says, it’s a lifetime pursuit.

a whole new world

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Ecclesiastes 2:12 Then I turned my thoughts to consider wisdom, and also madness and folly.

I was writing to a good friend on Facebook, and this just sort of spilled out of me.  It seemed like a good thing to repost here, because I need these sorts of revelatory experiences to remind me of where I’ve been, where I am and where I’m going.

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I don’t recommend it for everyone, and I wouldn’t have recommended it for me five years ago, but I have settled into a nice little life without making The Group the center of it.

I have a well-rounded set of friends and acquaintances and we rarely lapse into tirades of personal drama. But I have stopped soliciting that, too, and so my communication with my peeps is more about what we’re doing and where we’re going.

My recovery from alcohol is not the neon sign over my head any more. It’s a fact of my life like my adoration of God and my love of good poetry and my obsession with art direction.

The best thing is I don’t feel like I have to compete with people just to be who I am.

I look back on all the angst I felt around the women at The Group, and especially the women in certain cliques, and it seems so strange to me now.

I feel like I have spent great chunks of my life trying to shoehorn myself into places where I wasn’t welcome or even that I didn’t care about, as if that would somehow complete me.

I see it in my romance, trying to get men to accept me who weren’t even worthy of me. I see it in my family, as if they could provide the solace I needed when they were so overwhelmed by their own pain that they forgot I existed.

I went to The Lake with David last week and, for the first time since I’ve been going there, it felt just right.

Something is different with me, and I chalk it up to God changing me when I wasn’t looking. That, and all that TRUE drama in my life has sort of brought me around to a clearer perspective.

It’s really a struggle for me to muster much sympathy for the strident shrew who screeches because she hasn’t accrued an appropriate level of sympathy for her latest self-styled crisis.

Friends are putting their furniture up on cinder blocks at Harbor Town. Hopefully they stacked the blocks five or six high, because the water is thigh-deep there now.

I am happy because I am strong enough to push the lawnmower up the hill.  Even though it takes me three days, cutting the front yard is great for my waistline, and I revel in the personal glee I experience when I think, this body belongs to a 57-year-old woman, and it still works.

My life doesn’t really look that different from the outside.  From behind my eyes, it’s a whole new world.

OMG

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Last night’s dinner conversation included a debate on the necessity and/or appeal of texting and instant messaging.

My date was mildly astonished that I’ve never met my boss or my coworkers.  As a matter of fact, I don’t even know what they look like or how they sound.

I’m a telecommuter.  I applied for work online.  I interviewed and tested via email and FTP. I get assignments via email, phone text and AIM.

I have fibromyalgia.  It’s an odd illness.  It prevents me from sitting or standing for long periods.  As long as I keep moving, I’m fine, but that has its limits as well.  Eventually my back and knees will complain, and after a while they demand bedrest and Advil.

So I ended up here. I do all my work on my bed.  While sitting in a chair becomes painful after a couple of hours, I can work long days sitting on a mattress, propped up with many pillows, and still be able to cook, exercise or hook up with friends at the end of my “shift”.

When I was a child, we had a rotary dial telephone, four television channels and a Kodak camera that shot 2-1/4 x 2-1/4 black and white film.  Dad was in the Air Force, and I grew up around tubes and solder and meters and stuff.  Mom was a public school librarian, and when the budget enabled the system to put computers in, she learned how to use one.  But they do not have a computer at home, and while she has a cell phone, she keeps it turned off most of the time.

It’s an interesting time we live in, and I seem to be squarely in the middle.  I’ve resisted using Twitter, because I already spend so much time on my Treo and Facebook and email and AIM.  But the Red Cross and the National Weather Service are finding that during an environmental crisis, satellite TV really bites, and when the power goes out there’s not even that. So status updates and tweets help folks find food, water and shelter — and loved ones.

I do have a Twitter account.  I check it online about once a quarter, if that often.  But methinks a more proactive path lies ahead.