Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts

Monday, September 16, 2013

Fainting Goats



Ever since I first heard about them, I have wanted to have a goat that would pass out. It seems to me it would provide hours of entertainment, and you also would get the milk. However, rather than receiving a fainting goat, I have become one—and in the worst setting possible.

In my small town of 12,000 souls, we have one grocery store. It is not much of an exaggeration to say that everyone is there at once. If you have exchanged terse words with someone at the MVD, they are in the freezer aisle. If you have taught a child at the local elementary school, that child is in line with his mother at the pharmacy window while you go to buy spermicidal lubricant. If you bump your cart into someone, the person in question is a respected member of your church. And so on.

The most public part of this store is the part with the check-out aisles. It faces the door and the pharmacy, and 90% of the people you know are always lined up and checking out. It would be easy to do without Facebook, because you can always just go and buy applesauce.

Yesterday, I went to the store after church. I hadn't eaten for several hours, but I wasn't hungry. I had a bunch of unpleasant paperwork to fill out at home and I just wanted to get my shopping done and get back to get it over with. I had accidentally left my cell phone on my desk before going to church and I knew my husband, after leaving his church meeting, was going to arrive home and wonder where I was. The store was busy, but everything pretty much went fine. In the produce section, I waved at two women I knew from the school I had worked at and visited with a fellow soccer mom. In the frozen section, I ran into a friend who also homeschools, and we talked for a bit about the possibility of a homeschool field trip to a pumpkin patch. My cart was extremely full, and I was thinking that after I shopped, there wouldn't be any money left in my account, but reasoned that I was planning on baking bread and so that this fact balanced out my financial irresponsibility with the assurance that I was the right kind of person—which is the kind of person who bakes bread for her kids. Whole wheat.

I got to the check-out line and had placed everything on the belt except some toilet paper in the bottom of my cart. In leaning down to pick it up, somehow I jammed the cart into the end of the aisle and whacked my knee, in that tender spot just below the cap. It hurt. It wasn't terrible, just the kind of pain that accompanies a smack of the funny bone, not the sort that accompanies burning alive or giving birth. However, I immediately felt light-headed. Lights, like glowing asterisks, punctuated the air. I could hear only as well as if I was underwater, which is to say that there were sounds, but that they seemed distant and muffled, as if ushering from another world. Most concerning, I felt like my body wanted to fall down. Fine, I thought, if I can just get through check-out, I will go out and sit in my car until I'm OK again to drive. I can do this. I have persevered through worse. And indeed I did. Staying upright demanded quite a bit of energy, but I seemed to be doing OK. I replied to the polite checker—yes, I was fine today and how was she—and swiped my card, wavering only slightly and feeling more than a little disoriented. So far, so good. I even remembered to withdraw allowance in cash for my three kids. The problem apparently came when the checker asked me if I had a Fresh Values card. I did have one and had already placed my keys with the green fob onto the little check-writing dais in front of me. But no sound came out of my mouth. In fact, I only know that she asked this because she reported it later to the paramedics when they came.

Time seemed to be punctuated by periods of strange blankness, like pages missing from a book. The next thing I knew, I was being settled into a chair (right there is the check-out lane) and given orange juice that wasn't mine. A woman who I know vaguely as a substitute teacher was talking to me and a lot of people, one after the other, were saying, "Are you OK, Ma'am?" "I'm fine," I assured them, while wavering more alarmingly and then starting to retch. A plastic shopping bag was handed to me and I retched into that. Nothing came up, but breathing into the bag seemed to make me feel better, so I did that for awhile. Then, some men that I think must have been policeman suggested that I be moved over to the little in-store Wells Fargo area just across from the check-out line. They asked to see my ID, wanted to know if I knew what today was, and if I was diabetic, and then they let me know that they had called the fire department.

It was then that I realized that from now on I needed to find a way to shop at the very-expensive health food store on the edge of town, because I was never going to be willing to darken the door of Smith's again.

The thing is I have been at Smith's with intolerable migraines. I have been at Smith's with fibro flares so bad that I felt like I wanted to collapse in tears on the floor of the paper goods aisle. But, up until now, I have never made any scene that has caused anyone to notice my having a problem. And, today—which was a day that I had felt basically fine during—I was finally and irrevocably making a spectacle of myself.

Then the paramedics came. All twenty of them. And they talked to me for a while before insisting that I get on *A STRETCHER* and go out to their ambulance. This was not what I was hoping would happen. The nice substitute teacher lady had called my husband on her cell phone and I indicated that I would really like to just have him come and get me and that everything would be fine. I had no desire to the local emergency room and have them tell me that I still had fibromyalgia and also a fainting goat gene. One paramedic looked with interest at my cuticles and asked if the injuries therein were due to anxiety or a medical condition. "Bad habit," I told her. "So you pull the skin off your cuticles?" she asked. "Yes," I told her. Everyone nodded and looked at one another. They took my blood pressure, which is always low—this time being no exception—and my blood sugar and said I should go to the ER. "No thank you," I demurred.

After signing a refusal of service against medical advice, I ended up leaving with my husband, who installed me at home in a bed and then went back to dealing with the groceries and the laundry, without expressing overmuch concern about this new wrinkle on the ongoing saga of his wife's physical frailty. This, he thought, was the most helpful thing possible. And perhaps it was. However, after all of the attention and concern from the good-looking firefighters, I couldn't help but feel that this was not exactly the reaction I was looking for: "Oh, it's just my wife. It's one thing after another with her." I began to wish I had gone to the hospital where people actually cared about me. *

At any rate, I used to joke that it would be intolerably embarrassing to actually buy condoms in the pharmacy window at Smith's and that this was most likely the cause of the multiple teenage pregnancies in our town. Now I know that doing this would not be nearly as embarrassing as being hauled like a sack of dirty laundry from the most visible section of the local Smith's. And so I would now say to any teenager who is worried about publicly purchasing contraceptives that they should rest assured—at least the fire department would not be called.

Lest you worry, I have diagnosed myself with a vasovagal reaction and determined that the thing to do would be to avoid clocking any tender nerve centers, at least while in public, in order to avoid future embarrassment. From now on, I will simply remember to wear knee pads and a bag on my head before going to shop at Smith's.

And everything will be fine.


*This is not me making fun of my husband. This is me making fun of myself.

Monday, October 22, 2012

On Obedience to Authority: A Waiting Room Full of Dogs

Photo Credit: Morguefile by Alvimann



The first thing that put her on edge were the dogs.

When she opened the door to the waiting room, there were poodles. Shitzus. Papillons. Or something else. Both of them were something that stood on their hind legs, yipped, pretended to snarl and then wanted to be petted. Something that nature dictated would nudge her pen while she filled out forms, race 'round her feet in circles and sniff.

She couldn't help thinking there should not be dogs. Not here, in the physical therapy office. And this made her wonder if she was curmudgeonly—a dog-hater, a grouch. I have a dog, she thought to herself.

"Yip," warned one of the poodle-shitzu-papillons.

At first, no one else was there. Just the dogs. It was 12:45 and the air was redolent with the smell of cooked microwave lasagna. A soap opera could be heard in another room. Unsure what to do, she went back out to the car and retrieved her jacket. Having killed thirty seconds, she went back in. This time there was a man. She explained to him her purpose and he provided her with forms, which the dogs assisted her to fill out. Other staff began to emerge.

A woman behind the counter took her insurance card and attempted to copy it, explaining that the desk help was not present, for reasons no one seemed to know. She copied it several times, incorrectly and then returned it.

"The office help is not here," she repeated. "I will try again later."

Several more patients came in. Soon, there were more patients than there were chairs. This, she thought, was difficult. In a physical therapy office, who has to go without a chair? Stubbornly, she sat in hers, despite her outward appearance of health, daring anyone to make her relinquish the relative comfort and stand, muscles in screaming pain, to wait.

At some point, the dogs were put away in another room.

The therapist arrived for her and she went with her into a room. It was a small corner of a place—including an examination table with a face doughnut and a chair. Just beyond that was a large, ugly curtain, like you might find in an emergency room. Loud country music was playing. Schoolroom fluorescent light fixtures blared from the ceiling, flickering and pulsing their sickly light.

"So, what are you seeing us for today?" asked the therapist.

"Headache," she replied. "I've had a headache every day for two months."

It took several minutes to find a light bulb for the light fixture in the corner of the room, so that the fluorescents could be turned off  and, shortly, upon a commercial break, the music was eliminated as well.

"My jaw is in spasm," she further expounded, "so I was told to go to physical therapy by my oral surgeon."

Measurements were taken. She was told to make a funny face and then another while rulers were inserted between her teeth. It was mentioned that her back was too flat and that there was winging of her shoulder blades. This sounded glamorous and strangely gorgeous. She glanced at the floor, expecting to see feathers dropping off.

"Well," said the physical therapist. "I will teach you some exercises to do. But I want you to tell me if they hurt."

Everything hurt. This left both of them soon with few options for making the situation better.

"Just do the two sets of jaw exercises. I won't use the ultrasound or do the massage. I'm going to leave you with some heat around your neck and these electrodes on your face and arms. There is a non-steroidal anti-inflammatory on the pads."

She lay there, obediently. The hot towel felt pleasant and the electrodes caused no sensation. She wondered how much time had passed.

After a few minutes, a door opened. Voices which seemed strangely loud began to fill up the air in the room. On the other side of the curtain, a patient and another physical therapist had arrived. The patient, it seemed, was a teenage boy. She listened. There was nothing else to listen to. They talked about his head pain, about his grades and he explained to the physical therapist, in a somewhat quieter voice, that he was bipolar.

"Take your medication," the PT advised.

She began to feel tense. She was the unwitting eavesdropper on a child. Without thinking, she carefully kept her body still, her breathing quiet. She felt she had done something wrong, just lying there. After a time, something beeped. It beeped again. The physical therapist from the other side of the curtain poked a head into the sanctity of her space.

"You beeped," she said.

At that point, her own therapist arrived. She moved one electrode to the other side of her face, asked her how she was dong and bustled off again.

She continued to lie. She felt ridiculous. She was quietly lying on a table in an office full of dogs, in pursuit of pain relief and having already performed countless exercises which hurt. The prescribed ultrasound therapy and massage could not be used at all due to her extreme sensitivity. She was lurking in the dark while a child confessed his mental illness to a medical professional, and the appointment, which was supposed to be an hour, was clearly taking up almost two.

The teenager did his exercises. She listened as his back popped and he rated his pain. She listened and wished she didn't have to listen.

She began slowly to be aware of a creeping sensation of burning pain arising from her lower back. As this continued, her bladder suddenly felt on fire, and her legs started to cramp. The sensation worked its way up her body.  She noticed that the hand with the electrode had gone numb and shook it awake. It fell asleep again. I am lying on my back too long, she thought. It is messing with everything. I should change position. I should get up.

She didn't.

The hand went numb again and again. The other hand went numb. Her legs spiked electrical sensations that traveled up her spine. What time is it? she wondered desperately. I should just get up.

The experiment requires that you continue.

I will wait for the beep. It will come soon enough. It's not, she thought, as if I can't bear pain.

She stayed. Minutes rolled on. The teenager spoke. The pain increased. The beep did not come until, finally, it did.

She felt at once defeated and relieved.

A woman she had not met before came in and unceremoniously ripped the electrodes from her skin.

"That was horrible," she managed to get out.

"I'll tell your therapist," came the reply, with some alarm. Returning in a moment, the unknown woman assured her that the electrode procedure would not be done again.

"Make an appointment for twice next week," she said, politely. "We'll get you feeling better."

It is absolutely essential that you continue.

"We'll see you Tuesday!" said the woman at the desk, who had returned from wherever she had gone before.

Yes, she thought. You will.








Tuesday, April 17, 2012

Why I am Not Mentally Stable Enough to Go to a Writer's Conference


In two days, I am going to be waking up in Dayton, Ohio–a lifelong dream. Bear with me here. There is a reason I am making this pilgrimage to the Midwest in April, when I have no vacation time. I am going to be attending the Erma Bombeck Writer's Workshop there, with a number of grown-up, accomplished writers who probably aren't really just part-time instructional assistants. I confess that I haven't read most of them. You see, I hardly have time to keep up with the bloggers I am already trying to follow, who keep producing posts, one after the other and dropping them into my Google Reader, as if it were the nest box of an over-productive hen house filled with chicken essayists. Each deleted egg smells of betrayal. This is one more reason, in a series of reasons which might constitute an excellent sequence of blog posts, that I am not a real blogger.

But I digress. I am going to Ohio. To get there, I am taking two planes, and, quite naturally, flying from New Mexico to Georgia first, so that I can see more of the country aerially. This will also allow me to get to the conference well after registration has ended and dinner has already started, and perhaps been cleared away, because I love nothing more than making a splash with my entry. This statement is intended to be ironic. In reality, if there was a way that I could arrive already knowing exactly what the wallpaper was going to look like, so that it would be easier to devise make-up which would coordinate with it, that would be my overwhelming preference.

I suffer from fibromyalgia, migraines and facial pain, so my plans for this conference thus far have focused on surviving the travel without breaking into open tears in the Atlanta Airport. I am beginning to suspect that this is not in keeping with the spirit of the thing. This revelation came upon me rather suddenly this morning, when I happened to see a tweet from a fellow participant. (This was nothing but stray happenstance, as my use of Twitter is somewhat poorer yet than my use of Google Reader.) This participant may as well have been cavorting on a trampoline for all the enthusiasm conveyed in her series of tweets for...meeting the other participants.

This had not actually occurred to me as a good thing. Rack that up with other social networking fails, in case you are keeping score. So far, my greatest level of enthusiasm had concerned the availability of a comfortable bed and my own hotel room. Honestly, it's not that I don't care about writing. Or writers. I do. I am very interested in any information I can glean that might allow me, ultimately to improve my craft and support myself with it. And the kinship I feel with fellow writers is hugely helpful to me–from the comfort of my own living room. I just am having one of these Survival Moments, where pain and anxiety over pain have twisted my focus inward, and my inner resources are more or less amassed in service of mundane feats such as feeding my family and going to that place that sends me paychecks as often as I can. In short, I am an asshole. Which is what I realized this morning.

I have to ask though–when did being a writer start to become such a demanding social enterprise anyway? I have visions of gifted authors throughout the ages–twisted by mental illness and alcoholism, some of them hermits, others misfits–and it is impossible to imagine any of them gathering at "conferences." If J.D. Salinger's success had depended on his polite willingness to reciprocate comments on mediocre blog posts, I believe we would not have had Catcher in the Rye. I would feel entirely better about the conference, if I could shield myself with the safety of a known person. For instance, if somehow I could have succeeded in forcing Tangled Lou to attend this event with me, I know that everything would be O.K. In high school, I was given to running a sort of sub-curriculum for myself, which consisted of lurking in corners discussing events in impassioned tones and walking the hallways wearing no shoes. If I could complete the Erma Bombeck Writer's Workshop in this fashion, I think that I could be all right.

So, if you are someone who is attending the conference, look out for me. I will be the awkward looking 36 year-old woman with long, curly hair in disarray and the same facial expression President George Bush Sr. wore just before who threw up on a number of Japanese dignitaries. If you want to make me feel comfortable, ask me about duck husbandry or the development of phonemic awareness skills in kindergartners. You might think of me as a small, lost child. Try not to convey that this is your impression. I can get snappish with anything I perceive as patronization. Or maybe, on second thought, it would be safest to leave me alone. At least I've warned you of who to look out for, lest you find yourself entangled in awkward silence or disagreeable rebellion.

However, if you want to join me to lurk in corners, barefoot and swill espresso, while dissecting the worthiness of every statement uttered in your presence, shoot me a line. You're my new temporary best friend.

Tuesday, April 3, 2012

April.


This morning finds the world covered in wet snow as heavy as the hand of fate. Trees bow under its mass, reaching down into the duck yard as if to tenderly lift up a duck. Bulbs, yesterday arrayed in brilliant splendor in the grass, today barely emerge from underneath the sodden blanket. Raspberries, not yet planted, had to be unearthed in their pots and placed next to my house. Strawberries in a small greenhouse were covered with a living room blanket and hopefully survived the ordeal.

Snow was forecast, but I hoped for a dusting. My song to welcome in April two days ago would have been of days balmy enough for May, shorts brought out of the closet, and a fierce desire to plant. It seems the world wants to remind me to wait a bit.

While outside snow falls heavy on my dreams of gardens, inside my body is a turmoil of pain–not a new thing for me–and nausea, which is. It cannot be that each flare is the worst flare I have had, but this feels almost like it.  Sick enough to lie in bed all day, I am too sick, in fact, to lie in bed all day. The bed is like a torture device, but then so is a chair or a couch or standing. I cannot hold food down and so I cannot decide if taking the medications that combat my condition is a wasted effort. I am running out of things to try, running out of hope, for the moment. The act of being awake simply hurts and sleep is elusive.

I somehow vested a great deal of my joy and aspiration this spring in the gardens that surround my home.  I know that I am stronger than I think. I know that I can always start anew. There are actions to take, requests to make, new plants if these ones are frozen, and I will do all these things. But just for the moment, I feel buried.


Thursday, March 22, 2012

It All Comes From What Died Before.

Photo Credit: Flickr by Vanessa Vancour 

I have been very productive today. The sun is out, my yard seems ablaze with the possibility of springtime, and I am shrieking with childlike delight at each earthworm I discover in the leftover decay of winter. Because I practice permaculture–or try to–piles of leaves that have fallen on everything and degenerated under a heap of snow and ice are not a problem for me. Rather than coming in like a maid after a drunken party to clean up the vomit and broken bottles, I am an archaeologist searching for treasure that was left by the world while I waited, snug in my house. Winter has been sitting on my eggs.

Underneath the thick mulch of rotting aspen leaves which I laid on my vegetable bed last fall, there is soil as dark as coffee grounds. And as I lift a handful, worms thick as small ropes slide out from the loam, tiny soil organisms writhe in the embarrassment of sudden light. I am laughing, jubilant. I get it. All possibility is born of decay. It all comes from what died before. I am full of life, writhing with the inner action of soil-turning worms making my waste into fodder for new growth. The world knows, for the most part, two paradigms–rot and cultivation–but this speaks to another.

Putrefaction. The smell of wasted talent, days of usefulness that lie behind one, dreams that will now go unfulfilled. The necessity seems that I lie rotting on the ground, overcome with my pain. "Tara is ill now. Tara is in pain. She can't be asked to make this difference, contribute this service, offer this opinion. She has fibromyalgia and suffers with it terribly." Born of compassion or born of the easy, simple neglect we often show a friend whose illness has taken them from the sphere of our common activities, these thoughts turn me to something corrupted by my illness, unusable as a piece of moldy cheese left too long in the refrigerator. I want very much that the world should notice my need for a comfortable chair, or a call to ask how I am doing, but I never wish that the world would leave me alone to wane quietly in a corner. I am not ready, at thirty-six, to rot.

Cultivation. The tilling of soil, the turning of earth to loosen it for planting, to add fertilizer, to remove rocks, to rake. We have all been doing it as long as we remember, we know how to do it and know that it is right. The work of it seems somehow to be God's work, in particular. And yet, and yet...Just the same as we know, we know the necessity of a positive attitude, a forceful insistence on taking the bull by the horns, conquering indecision, being the author of our own lives, advocating, pushing forward, coaxing the plants to produce. And yet...

I let things lie. I let them compost in place. I cut down the vegetables of last year's garden and leave them scattered about the soil, as messy as the floor of a child's room. I layer down compost, manure, straw, leaves, water. And I practice faith in Nature, which has been making things grow, unaided by humans, for time immemorial. I simply help by moving Her ingredients to the right place. The mistakes of last year–the odd tomatoes, the funky asparagus, the Brussels sprouts that didn't produce in the first year–they are all still there, making that soil richer and wiser. That soil will have a history that can be read in the deep blackness of its crumbly soft meal.

I let myself lie. I makes decisions slowly, letting all of the scraps of consideration slowly turn into something fine enough to use. I am composting everything I ever was, wanted to be, or planned and failed at all the time. No dreams are swept away, just tucked under a protective layer of mulch. The girl who wanted to act, the woman who first married then divorced, the mother who thought she could protect her firstborn son from the world through her vigilant insistence on wooden toys, the runner, the vixen, the addict, the student. They are all in there, steeping in the mingled history of my terra firma.

Because I have swept no parts of myself into the corner of a landfill, I remember what it was to be a teenage addict, and I love addicts, as well as teenagers. Because I have not scorned the twenty-two year-old child who brought my first son into the world, full of ignorance and theory, I remember that I do not know how hard the parents of my failing students may be trying. Because I remember living through a divorce, I stop, catch my breath and try again in my current marriage, over and over and over. Because I have failed and not forgotten, I have humility in my roots, nourishing the leaves and flowers I dare to put forth anew.

I am not better than I was. I am just a product of the power of sunlight and water put to organic matter. I am proof that humanity always moves, transforms, wakens, alters, when we make full use of ourselves.

Monday, March 12, 2012

The Tide.



I suffer from fibromyalgia, for which I have receiving treatment for about a year. Despite multiple tests and many medical interventions, for now, my fibromyalgia is not well-managed. Perversely, it seems in some ways to get worse whenever something new is attempted to treat it. This weekend, I suffered a horrible flare–one of the worst I have had, and all of the mental preparations made ahead–the attitudes I intended to take, the help I planned to ask for–all of it was wholly inadequate to weather the barrage of severe pain and incapacitation. Although my usual penchant is for humor writing, I also write my way through this illness. Sometimes what you see here is nothing more than sensations lobbed like globs of paint at a blank canvas. I write to keep me sane, but I hope it might help someone else stay sane, too.

---

Saturday night finds me plunged into the solitude of complete exhaustion, senses only just submerged, my own voice an unfamiliar reverberation rippling around me. I can hear all of you, amiably chattering around me, but you are faint and garbled. The need to reply seems distant. I am aware only enough to be bored, but not enough to meaningfully engage my mind. I lie submerged, aware distantly of embarrassment, regret and great sadness. For a time, it seems right to simply remain here, under the weight of the water and be still.

Finally, though, regret becomes too large.

Pulling myself up to break the surface, pain crashes on me. Spikes hammered and thorns wound and bands pulled tight around me. Nausea. I can hear you clearly now, but the pain makes me angry with you, driving sharpness into my nervous system with each unheeded request to get ready for bed. The cold on my wet skin raises goosebumps, my teeth chatter. I find myself yelling.

I rose, with great effort to give love, and gave you only concern and bitterness.

So I sink back down, and now the embarrassment is greater. Pain has chased me underwater, with its torturing vines of thorn that wind round me as I shift. It is profoundly lonely to be in pain. Lonely for the love I can't give properly and the words I cannot find to say.

I must remember that I am not a village flooded and laid waste but a shoreline, awaiting what I am made to attend. I have only to experience, give voice to, and remember that the change will come.

Weeks now, they ebb and flow, and bring with them the gladness of a day when I can go walking or a series of days, like precious beads on a string, that feel purposeful. Joy and gratitude. Love and acceptance. These things come. They are there now, starfish under the heaving, dark wave, merely clinging to a rock, to be found later when the tide is out. The tide always goes out. And I will be full to bursting with love again, for the gifts it leaves me in the shallows.

For now, for today, I am submerged again, my world distorted by the wave I could not escape. So I wait, remembering the gladness I will feel at the onset of its ebb.

Thursday, March 8, 2012

Advice from the Medical Expert



Dear Medical Profession,

Hi, it's me–the curly-haired, pale-looking person who keeps making appointments with you. You've probably seen me in your waiting rooms, looking for a magazine to read that isn't on either hunting or beauty advice. I have a writing prompt on confrontation and you just popped right into my head.

At one time, I wanted to be an expert on world mythology. Later, I studied to become–at least in a small way–an expert on child development. I have many interests. However, without meaning to, I have become an expert on going to doctors.

Let me qualify that for you. Within the last four years, I have been to see an ear, nose and throat specialist, a sleep doctor, an allergist, a neurologist, two rheumatologists, a chiropractor, a podiatrist, and an endocrinologist. I have visited my primary care physician so often that we are practically joined at the hip. He is moving in May and I feel personally betrayed. It's a bit like being left by a lover. A lover with an encyclopedic knowledge of my complicated medical history.

I am also getting to be an expert at taking medications. I once tried approximately fifteen different medications, at different times and in different combinations, to get my allergies and asthma under control. Currently, I am taking a cocktail of medicines for my fibromyalgia and migraines which allow me to get out of bed and function, but which have robbed me of my short-term memory and forced me to use an online thesaurus to remember what I am trying to say.

I am an expert on getting medical tests as well. I have had an ultrasound of my thyroid and abdominal areas. They have X-rayed my chest twice and my sinuses once. I have had an MRI on my brain and an abdominal CT, which was one of the most hilarious experiences of my life. A sleep study was conducted. Blood enough to happily feed all of the vampires of Bon Temps has been extracted from my veins and analyzed. Urine has been taken. I have had spirometry and an echocardiogram.


Having spent one-third of the last portion of my life at doctor's offices, and seen the good, bad and the ugly, I would like to make a few comments on what doctors and their staffs could do to better help their patients. Strictly from a constructive point of view, you understand.

  1. I don't mind having to wait five minutes to speak to the receptionist during busy times at your office. I know this is outside your control. However, I would prefer not to spend that time listening to a symphony rendition of "Hey Jude" punctuated every thirty seconds by a reminder that my call is important to you. Shut-up and let me look at Facebook in peace while I wait.

  2. Stop weighing me already. You weighed me last week. I don't give a rat's ass what I weigh and I am dizzy. I am here to treat my medical condition, not because I can't afford Jenny Craig.

  3. Don't ask me if I have contacted a dentist to see about teeth grinding, or employed a variety of other strategies no one has ever suggested, as if I should know that these would be the appropriate actions to take. I'm not the expert. You are. That's kind of the point, right? I am busy surviving my pain, loving my children, and sucking the marrow from each lucid moment I have. Honestly, I'm not spending much of that precious time researching what's wrong with me. If I need to see a dentist, please tell me so.

  4. Stop asking me, when I am having trouble walking into your exam room without my husband's help, if I am able to get regular exercise. No, I'm not.

  5. If you are going to prescribe me something that will make me feel nauseated, lose all interest in sex, forget how old I am or not be able to feel my legs, a heads-up would be helpful. Honestly, I may still take it. I'm that desperate. But I'd love to know about this little detail. 

  6. If I suffer from migraines and you prescribe a drug with a side effect of headaches, I have a great  idea. Give my neurologist a call first. Since I have a history of asthma, drugs that can worsen breathing should be discussed with my allergist. You guys have the medical degrees. I'm just the poor asshole with all the medical conditions. I don't want to play "telephone" with a bunch of specialists. 

  7. I know that you are sincerely trying to be nice, but please stop telling me that we are going to get this all figured out and I am going to feel better, that I just need to be patient. While I have been waiting for the next medication we are trying to work out, I have had to miss work four times. While I waited for a bunch lab results to get sent to my PCP, I spent three consecutive weekends laid up missing time with my family. All these fragments of waiting for one piece of information or another have now added up to a year and a half of my life spent waiting for something to work. That's long enough for two babies to be brought to term. It may be easy to tell me to be patient, but it isn't the most useful thing to hear anymore.

  8. Fax the motherfucking records. I shouldn't have to call you twice or walk to your office or fill out a special form so that I can get a copy of my own medical records to give to another doctor. Stop acting like I am stealing your favorite Pokemon cards.  

  9. Train your office staff to act more proactive than observers casually munching Cheetos at the scene of a car wreck. If I walk in to say that I have developed hepatitis and need to see my rheumatologist, don't just tell me she has no appointments and go back to shuffling papers on your desk. If I am out of a medication right now that will cause withdrawal symptoms tomorrow, your staff should not insist that we have lab work done before the doctor will write a new prescription. That's stupid.
In summary, if you could remember that I am a real person with a real life, more than one major system in my body and limited time and resources, it would go a long way. A waiting room espresso bar would also be nice.

Sincerely,

Tara Adams
(Think of me as a mystery shopper for medical care.) 



Tuesday, February 28, 2012

Not funny.

Photo Credit: Flickr


I am having this horrible fibromyalgia flare and I keep vacillating between walking around trying to act like everything is fine and just wanting to let my body fall onto the ground because holding it up is hurting so badly. I am so tired of being tired. This is not really how I wanted to see out NaBloPoMo. I feel like I can't do anything that needs to be done and things keep on needing to be done and I keep doing them.

I look like I have suddenly decided it would it would be fun to dress up as a zombie for a mid-winter Halloween. And parent-teacher conferences start tomorrow so I have all this data I am supposed to compile and various notes to type. I am not even sure if I remember how to speak or write in English.

I am not, right now, finding this funny. (Except for the zombie guy.)

Tuesday, February 21, 2012

Missing the Moment

Photo Credit: Flickr Snow Fall by James Jordan

When you are passing into a new part of your life, do you know? Sometimes, it's obvious because you are sent home from a hospital with a squalling infant that you never had before, or someone declares you "husband and wife." Other times, maybe you know only in retrospect.

The other night Mike and I were driving out for dinner, in falling snow, when suddenly there was no snow, and the road was wet with rain. Neither of us could remember at what point it had become rain. Life happens like that, I think. I also think that, just as there is a place where the road is snowy and a place where it is not, there is a moment when we begin to change. We just don't notice it at the time.

I have spent the first part of my thirties being driven as if by a horde of biting flies. Not necessarily in a bad way. This driven-ness has not produced any real money for my family, or worldly success, but it has caused me to bake Christmas gingerbread cookies from scratch year after year, assist my children in assembling craft creatures for Valentine's Day with hot glue, and drum up numerous behavioral systems for the management of AD/HD, defiance, and general laziness successfully. I have cooked. I have menu planned. I have re-organized. I have gone to work twenty minutes early almost every work day of my life. I have worked harder than I have to. I have done all this with a sense of purpose, and direction, as if, in some invisible way, I am going somewhere. Somewhere important.

And then I got sick.

There is something about ending up with chronic illness that makes one into a sort of unintentional Buddhist. At first, for a long time, I felt like there was there this maddening energy pulsing within me, and my body wouldn't cooperate. There were things to do and I couldn't do them. My thinking centered around how to make sure these things got done anyway, come Hell or high water. I was aggravated and angry.

Somehow, subtly, this has changed. I still think a lot about what has to be done. But somehow it occupies less importance to me, as if suddenly Life and Death do not hang in the balance of the completion of my laundry. I have started to let go of the idea that I will have everything that a healthy person has, that things will be the same as they were. Instead, my thinking centers around what choices I need to make given the reality of my condition, and what the consequences of each choice will be. I think with more patience and less agitation, although the choices are just as hard to make.

I could regret the muscle tone that I have lost, the friendships I have no energy to spend time on, the job I may not be able to keep. I dislike the pain and exhaustion. But I don't mind the change to my pacing and perspective. That part, I think, is good. And my cat is very grateful that, after all these years, suddenly I sit long enough to be a good lap person.

Somehow, driving snow melted into rain without my seeing and I became a subtly different person. I blinked and missed the moment when it happened.


Tuesday, February 14, 2012

Here is What is Romantic.

So, it is Valentine's Day.

Let me just say that this is not, and has never been my favorite day. Ask me for an explanation and I will refer you to the fact that I had children before I got married. When Mike and I married, in fact, all three kids were in attendance, and when we went home, we had to give them all baths.

My romantic holiday is all taken up with Pirates of the Caribbean valentines, batches of marshmallow creme fudge that my son has volunteered to "make" for his class and three sets of homework that will need completing. Nothing is romantic about Tuesdays. At least not in the traditional sense.

That's O.K., though because I find my romance elsewhere.



Here is what is romantic:

When I suddenly separated from my former husband and Mike was not a romantic interest but my best friend of many years, he sat with me in dark rooms, long after it felt like the rest of the world had forgotten me, and told me that I was going to be O.K., because he was going to make sure I was O.K. And I believed him.

Before our child was born, Mike liked to travel and work only as much as he had to fund his freewheeling lifestyle. When our Mikalh (MEE-koll) arrived, he moved us to New Mexico and took a job that required him to commute an hour and a half each way and work outside in enough cold that icicles formed in his beard. Since then, he has never stopped working to improve his skills so that we can have more than we do.

Mike treats the two older children from my former marriage just like they are his own. Devin plays soccer, and so Mike took a position on the local soccer board, which as abysmal a volunteer commitment as you can hope to imagine, because he loves Devin, and wants to make sure he can play soccer the rest of his young life here.

When the pain of my fibromyalgia makes it too hard to raise my arms behind my head, Mike has shampooed my hair for me. He has helped me up the stairs more times than I can count and faithfully accompanied me to doctor's appointments and remembered to say whatever I was forgetting. He has done the housework so that I can sleep. "In sickness and in health" may have asked more of him already than he was expecting, but he has met the challenge, even if I have seen him have to close his eyes and take deep breaths to do it.

I do not need roses on Valentine's day, and I can't eat chocolate anyway. Let crappy store-bought notes and children's homework rule the day. Just give me an evening alone with my husband where we can talk uninterrupted, and enjoy one another's company together as Life races by us as if watched from a passing train.

Romance is nothing more than his hand placed in mine as I brave another day.




Tuesday, February 7, 2012

Upset: I don't especially like orchids, and I don't like feeling like one.

Back in early December–back before I participated in Reverb Broads, back before I jumped into January's National Blog Posting Month...and then February's National Blog Posting Month...before I knew that every damn month was National Blog Posting Month, my Dad did something wonderful.



He offered to send me to Dayton this April to the Erma Bombeck Writer's Workshop. He did this despite the fact that all I had to show for my "career" as a writer was a silly little vanity blog with a following of friends and acquaintances and a renewed interest in my writing. I had not shown such interest, though, since I was a maudlin teenager punching out short stories that read like Catcher in the Rye soaked in peach Schnapps and abridged for Tiger Beat. Maybe this is what caught his attention.

My Dad believes in me. He has many fine qualities, and this is one of the nicest. Especially when you consider that, in his lifetime, I have done things like have more than one child out of wedlock, change career paths as often as my underwear and become a practicing witch.


Truly, I have done lots of things which have kept both of my poor parents on their toes all these years. It's nice that they still choose to see me in the fond and admiring terms that they do. (My theory is that they have no other children, so they can't really shun me, being the nice people that they are.) 

But I digress.

I think my point was that my dad paid for me to attend this conference. Which is way cool. I get to travel all by myself to a real event. Unlike everything else I attend, this is neither going to be put on by child actors or be mandatory for all church members. The purpose of the whole event is to further my writing "career," and I get to stay there all weekend.

Oh, crap.

It's February now, which is very close to April. There is but one month between them, in fact. I have to go to Dayton by myself. It may irritate many of my readers, but this is somewhat problematic for me. Not that I have never flown alone before. I have. But this time, I have to change planes both ways, get a shuttle to and from the Marriott, and survive a conference all weekend despite my weird new physical limitations. 

Recently, the only way I can sit through church, which lasts one hour, is to have my husband brace the back of my head with his hand the whole time. (I don't think they will let him come with me to do this at the Writer's Conference.) I get cold. I get migraines. I get debilitating cramping. I get mental fog. I am not sure I can sit for an hour and a half at a time–much less hours at a time, whether I will need help if I become really ill, or how the stress of the travel will affect me. 

The worse my symptoms are at any given time, the more I become like a sort of penurious orchid, requiring constant care and maintenance to subsist on a basic level. Any change in temperature, light or humidity could be disastrous for me. Travel requires constant adaptation, something a normal organism does with relatively little effort, but which for myself, the orchid, and various exotic frogs, is terribly troublesome. I do not wish to end up a puddle of decomposing amphibious goop stuck to the bottom of a Delta seat.

I don't especially like orchids, and I don't like feeling like one. My deepest fear, I think, is that I will end up hating the whole experience of the Conference, and that by hating it, I will have disappointed my dad, who had the blind faith to believe in me for no good reason. 

I am not great with taking care of myself. I tend to want to control things, to do things myself, and not to miss out on anything. I have adapted to life with the understanding that Serious Shit is relying on me, and I had better deliver, or there will be Hell to pay for it. This has made managing my chronic illness difficult. My personality is great for being depended on, but not for depending on myself. I'm lousy as Hell at that.

Luckily for me, I have great friends who help me work things out by listening to me in a magical kind of way. This kind of magical listening is so rare and special that hardly anyone can do it. But my friend Amy can. She knows how to listen to me be upset, and just let me be. She doesn't try to fix me, give me advice, shush me, or get me to be positive. She listens to me, but she listens not to the me that is the complainer but to the me that is the commitment that I have. And then she says whatever there is to say. I talked to her for some time about the problem of this conference, she listened magically, I talked some more, and here's what we worked out:

I will take everything in my arsenal–every medication, every pillow, every strategy to get me through. I will have it be OK to take breaks, even if I have to miss things. I will rest if I need to rest. I will make my well-being the number one priority of the whole adventure. I am going to get something fabulous for my writing from being there. The place will be jam-packed with excellent humor and human interest writers, so I can't fail to garner some gems of wisdom.

But, if I can get through the upset to my system and still take care of my body and soul, that will be an even larger victory for me. That would be worth the whole damn trip.


Upset can wrap my stomach in knots, give me heart palpitations like a rabbit with an aspirin overdose, sour the flavor of an entire day. Some upset I just don't know how to resolve. But upset can also be an opportunity because I am lucky enough to have friends that can examine it with me, as if entering a cluttered room together, where they help me sort out the contents of my emotions, separating the usable from the waste.

If bravery lives inside of fear, then transformation lives inside of upset.


Sunday, February 5, 2012

What Sanity Looks Like

Photo Credit: Flickr


I seem to have entered a new phase in my relationship with my chronic illness.

For the four or more years that I have been continually battling bad health, I have maintained an attitude of hopeful expectation. I have been looking for solutions and expecting my illnesses to be resolved and for my normal life to resume. And, in fact, one by one, many conditions have been brought under control. My asthma is now almost asymptomatic, my allergies well-managed and my migraines improved. But one condition after another has just popped up in the same way that carnival moles emerge suddenly demanding to be whacked before disappearing and reappearing again. The result is that for all my efforts, I am now as sick as I have ever been.

I am tired–tired of dragging my sick body around and making it act like a healthy body, and more than that–I am tired of the cognitive dissonance.

My "faith in ambiguity", the heart of my spiritual practice is about asking the hard questions, facing the facts and charting a path based on Reality and Choice. I have lately realized, with a mixture of horror and the relief that comes with distinguishing a problem, that I have been at the effect of my illnesses and the circumstances surrounding them. I have a commitment to be the author of my life, and I haven't felt that way of late.

So, I have had to ask myself–given the inescapable reality of my being chronically ill and needing more rest, more care and more help than I have ever wanted to admit that I would–what would I now choose for my life?

The labor of relinquishing this notion of who I was going to be, and what I thought I was going to have was painful. But in the moment of really letting go of my insistence on being a healthy person with all the things a healthy person can have, I felt free again. The unmet expectations of my former self burned up like ashes in a bonfire, simply and cleanly. Life became something I could invent again.

I am not saying maybe doctors won't find a way to fix me up, or that my body won't mend itself, my fibromyalgia won't become tolerable to me, or that my my attitude won't change. I'm not saying I am not keeping my doctor's appointments, or that I am not going to work tomorrow.

I am saying that right now, in this moment, sanity for me looks like letting go. Once, when I was seventeen, I first admitted that I was powerless over my alcoholism and powerless over my bulimia and the world changed on its axis and became a new place. Now I must admit that I am powerless over my health and my life has become unmanageable.

Every time before that I have ever had the faith to let go and fall into the arms of the Universe, something has caught me.

Let it be something beautiful.

Friday, February 3, 2012

Gentle Fatty Asses

My family is different.

I have discussed this at length in the past with you, so I won't belabor it again, but suffice it to say that an unusual number of  items such as Student Assistance Team meetings, urgent parent-teacher conferences, addendum IEPs, and therapy appointments are blocked out on our family's Google Calendar. The problems seem largely to come down to an inability either to pay proper attention, to exercise proper impulse control or to render spoken language into usable operating instructions within a reasonable period of time.

The latest approach taken to this has involved the use of Omega-3s. The psychiatrist treating a child of mine, who shall remain nameless, said that studies now show that the use of Omega-3s can be effective in treating mild ADHD. In any case, Omega-3s are da bomb. They are good for joints, organs, blood circulation and may help ward off cancer and alien abduction. So, it's not like it's going to hurt him to take 1000 mg of organic flax seed oil a day. Anyway, before considering prescription medication, we are giving him these Omega-3 miracle pills.

Which is interesting, because now my dog is taking them, too. Because even our pets are special.


Besides being sort of inherently "different" due to looking like a black Lab with dwarfism and ears like a donkey, my dog Xavier also has special health needs. He suffers from a problem with his kidneys and requires a special, extremely expensive diet to treat this condition. Xavier also, it turns out, requires, one teaspoon per day of costly Omega-3 supplementation on his exorbitant dog comestible, to deal with joint pain and general health. Cost-wise, I may as well be serving him chopped frankincense with a frosting of cocaine.

When a year or so ago we first had to supplement the dog with "essential fatty acids," to combat nose and paw dryness, my then kindergartner erroneously referred to them as "a gentle fatty asses".

The name stuck.

So, at this point, setting aside the ghastly and appalling number of prescription medications and supplements I take daily to manage my fibromyalgia, migraines and Hashimoto's disease, the special diet the cat is now on  to deal with the unexplained presence of blood in his urine, and the treatments taken for asthma and allergies suffered by all human members of my family, I find myself thoroughly amused that I have both a dog and a child who require the daily nourishment of "gentle fatty asses."

And now this: The other day, when I went back to the school I where I work to collect my son from his first grade classroom, his teacher pulled me aside and explained with dismay that he had spent most of the day making animal noises and playing strange, silent games with pencils on the floor of the classroom.

So, I did what any good parent would do. I went home, cried, drank coffee, and then ran out and bought a bottle of gummy Omega-3s.

Everything is going to be just fine.


Monday, January 30, 2012

What if we all just came out of the closet?

I wrote my post on Saturday in so much pain I could hardly see straight (in case that wasn't clear.) It is really hard to write when you are in pain, especially–I find–head pain. So, I really wasn't sure, when I hit "publish", if what I had worked on was written in English or in Klingon, or whether it was a good idea to write it.

I just knew these three things:

  1. I needed to write about what I was experiencing or I was going to go insane.
  2. I am supposed to post every day for NaBloPoMo.
  3. I never promised anyone all my writing was going to be great.
Anyway, it was Saturday, and, on Saturday, I could publish nothing but pictures of LOL cats and links to mime porn, and it would be totally irrelevant because no one reads my blog on weekends.

However, it is Monday now and, in case you are  worried about me, I want to clarify a few things:
  1. I am not suicidal. This may not have been clear. In my blog post, I talk about "stopping" or "folding". What I mean is putting the brakes on some or all the activities that I am maintaining that have the trappings of a healthy life–work, church activities, running kids around. How much of this do I continue to do? When do I cut back? When do I just...stop? The thought of wishing the lights would go down on the whole scene of day-after-day pain? Yes, it has occurred to me, but–no, not seriously. Not any more seriously than my thoughts of throwing my children off of Omega bridge, anyway.

    Is it worth it to go to work in pain if it means helping twenty-five kids to read that day? Maybe some days the answer is yes and some days it is no. Is it worth it to read a whole chapter aloud of The Magician's Nephew to my six year-old while suffering from a migraine and throat pain? Again–yes some nights, no some nights. These are the kinds of questions I am really struggling with.

  2. I don't write a blog so that I can dump my pain into the public sphere for no reason. What I really hope is that honesty makes a difference. I want to be seen for who I am and for all that I am feeling–because that is what all people want, but that is a very small concern to me compared to this–I very badly want others to see themselves in my writing. I want to make an actual difference to someone who feels like I do, or loves someone who feels like I do. That, my friends, is something worth getting up off my pain-ridden ass every morning for.
Bloggers, especially bloggers much bigger and better than I, really make a difference. Reading Glennon Melton's heart-wrenchingly honest description of getting sober opens the doors for other women to try recovery. Jenny Lawson's frank and unflinching description of suffering from anxiety and depression allows anxiety to depression to be talked about, for people hiding in the dark to come out and lay claim to the miracle of their survival–publicly.
Pain is something that we hide. Hell, I hide my pain every day.  I do this naturally and without even thinking. How much more pain do I have because I am clenching, stuffing, composing myself so that I am presentable? I do not want to be the object of sympathy or pity. I want to be seen for who I am, for all I am–which is a survivor. 

Every day I am at war with the depression, indignity, discomfort and disquiet that pain brings to my life. And every day I put my head to the pillow after having mothered my children, imperfectly but with all my heart, done my job to the fullest of my capacity and lived to fight another day. I–and every one else fighting an invisible battle with their body or their mind every day–deserve a medal. We do not deserve to feel embarrassed.


I want to be a part of that. So, come out, come out, wherever you are, and join me!

"Recession" by my friend Patrick Kelly (ice receding on concrete)


Saturday, January 28, 2012

Thoughts That Go Bump in the Night

Lately, I feel a little bit like I have been hiding in the closet.

So, this blog post, written late on a Saturday, when no one really reads my posts anyway, is intended to bring the ugliness and confusion of what is going on for me under the overhead lights, where maybe it can be made less frightening by the of scrutiny of others, like the closet zombies of my childhood. (Confession: I am still a little worried about the potential presence of closet zombies, but that's another post.)

Another thing. Maybe–more importantly–I hope that my writing what feels true in my heart right now can strike a needed chord with just one person.

Photo Credit: Flickr
Tick tock.

I have found that in life, it is useful to know that things happen in a linear way, that the world doesn't just persist the way that it seems now, that it isn't all pain, all the time, forever. Everything begins at a definite and specific point in time.

This time–although my experience of pain seems more or less like a sort of endlessly re-playing fold in the time-space continuum–what actually happened was that a cycle of increasing pain was set off by a sinus infection triggering migraines triggering fibromyalgia flares and leading to jaw clenching, which then caused terrible jaw pain.

I have already been living with pain. Enough, even, to feel like kind of a bad-ass. But this pain is Big-League pain. It is currently kicking sand in my eighty pound former pain's face and humiliating it in front of cheerleaders on the beach.

So, what I want to put down in writing are the thoughts that have me–that make me see monsters when I hear small noises. I do this because it sucks to be alone. Because somebody somewhere feels this way too. Maybe it's you. Or maybe they need you to reach out to them today.

Do with them whatever seems important to you. Call a friend with MS with whom you've fallen out of touch. Don't forget to enjoy that fact that you can run, if you can run. Hug your kids. Pet your cat. Whatever means something to you.

Thoughts That Go Bump in the Night


People Say to Ask for Help-but How?
Practically speaking, am I supposed to call my rheumatologist or my primary care physician? Do I prudently wait it out until my fifty recent lab tests are all in and they know what might be wrong with me or do I miss work (again) to make an appointment now simply to say "I hurt. Please help?"

Do I go lie down, when I know I will feel just as bad after I get up, or instead just get dishes done, so that Mike won't have to? How much help do I ask of family members, and how much is burden unfairly placed?

How much do I tell people? There is so much weighted into the words "How are you?" when how you are is on the knife edge of a scream, holding panic at bay in favor of duty or stubborn will. Any way I answer this question makes me feel crazy.

Do you really want to know, or not? Even if I don't have a brave face to put on it?

How Much Worse Can It Get?
This is a very scary thought, a Zombie Apocalypse-level thought, in fact:

If this pain dwarfs the pain I was in before, how much worse can pain get in the future? And how much can I live with?

When Do I Stop?
Will I know, if and when that time finally comes when the right thing, the sane thing to do is to say:
"I cannot work."
"I cannot drive the carpool."
"I cannot be on the committee."

What will be left after that?

Until then, or until things get better, is the right thing to do to just keep dragging my body through day after pain-ridden day of work and responsibilities, hoping for the best?

Is it Worth It?
Every day, every hour of this last week I have had to remember that my children need me, remember that my husband and parents love me, remember that I actually love my life, because my mind keeps asking

 "Is it worth it?" 

Is it worth it to go through all these motions day after day when every breath in and out carries an experience of agony with it? When the only salvation from the pain is to distance myself from my experience of everything so that I can survive, but that, in so distancing, I feel farther away from love, from pleasure, from laughter, as well as from pain?

Yes, yes, yes, it is. 




It is, because my husband sent me flowers on Friday at work just when I felt I might easily sink into the earth and no one would really notice, and, for those few moments, I felt loved and seen all at once and I knew I had the strength to go on because of it.

It is, because my six year-old's hair smells like sunlight and is warm against my cheek.

It is, because the world still needs me. (Who would put toilet paper on the shopping list for God's sake, if not I?)

Tick tock.

Life is like this game of chance. I can place my bet, at higher risk, on the side of getting better, thinking everything will work out soon. Or I can fold, and lose everything I might have gained if I stayed in the game. There is no way to know when is the right time to fold, so I am staring at Time, trying to decide how to place my bet.

Saturday, January 21, 2012

In the Wake of the Gluten-Free vs. Dairy-Free Hostilities

Apparently, while I wasn't paying attention, there was a skirmish between the gluten-free people and the dairy-free people, which the gluten-free people won.

My youngest child, Mikalh, who is one quarter Native American, is lactose intolerant.

We recently made this discovery based on the evidence that both my husband and I are lactose-intolerant, that Mikalh farts all the time and says his stomach hurts, and that his pediatrician told us it was blindingly obvious that he was lactose-intolerant. So we took him off dairy shortly after Christmas.

I know you are wondering how to say his name. It is pronounced  MEE-koll, or as one caveman might say to another "Me call you later." It means "Bear."

Mike and I either tolerate or just go without all the things one eats with dairy. Since Mikalh is only six, I don't expect him to do this. So instead, I am spending what might have been his college savings on almond milk, coconut yogurt, soy cheese and tofu cream cheese.

The thing that surprised me, though is how few choices there were in macaroni and cheese, his favorite item of all time. Hence, I found myself in a store, angrily yelling at boxes of health food macaroni festooned with adorable rabbits, "What? I have six choices of cheese and two types of gluten-free flour but none with soy cheese? Really?"

This is when I developed my theory of gluten-free vs. dairy-free conflict. It seems like seventeen years ago, when I was vegan, there were way more dairy-free choices than there are now, but that all their aisle space has been given over to gluten-free products. This is especially annoying to me since, as someone who suffers from fibromyalgia, I have had to answer the question of my possible gluten-intolerance approximately 20,000 times at this point, since people so frequently assume gluten must likely be the cause of all suffering on this earth (apologies to those of you with actual gluten intolerance here).

Perhaps, though, this is an asshole thing for anyone to say who has a refrigerator filled with this:


Friday, January 20, 2012

This would be a good time to comment.

Photo credit: NASA


It is easier to send news from outside the eye of a hurricane. It is also easier to write blog posts after a fibromyalgia pain flare has passed. Inside the storm–inside the flare–everything just feels like thoughts flying by with the violence of gale force gusts, jagged bits of reality that might just impale me. There is nothing but confusion and a blur of wet, fast-moving color. Moving, breathing, thinking and feeling HURT.

And nothing is really getting done but this: Go to work. Breathe in. Wash this dish. Lift this hamper. Breathe out. Don't cry. Make food. Breathe in. Check email. Breathe out.

This is not one of those "Pain is providing a resource for her art" sort of things. I don't think people want to read posts day after day about what specifically my pain feels like or what sorts of depressing thoughts I am having about life as a result of my pain.

Horrifyingly, I think I listed this for NaBloPoMo as a "humor" blog. And none of this is occurring as terribly funny to me right at this moment.

So–here's the question. If I can get past the "just surviving this day" part of the cycle, what do you want from me? How can I somehow use this fracked up experience I am having to amuse, inspire or educate other people? If I know someone is reading me and that people actually want or need something from me, it will help me immeasurably.

This would be a good time to comment. Deafening silencing will probably depress the Hell out of me. No pressure.

Wednesday, January 4, 2012

The good news is that I can feel very special.

If I needed a reminder that I am just like everyone else, yesterday was not reassuring. However, if, as my life history indicates, I just want to be "special", then things are going exactly as planned. With only two more days left of winter break, I had a long list of errands to run. Here was my list:

  1. take my teenage son, Rowan, to his get his allergy shot, 
  2. then go to his prescribing doctor in Santa Fe. 
  3. We needed to hit Trader Joe's and Target while down in Santa Fe, 
  4. and then on the way back pick up my cat at the vet. (My cat was at the vet spending down my small savings getting all his goddamned teeth dealt with so that I don't feel like a bad person, but that is another blog post entirely.

But, first, I had to go to the lab and get blood drawn.

If you know me very well, the background of your consciousness is now filled with maniacal laughter. In case you don't know, I am part vampire. Blood draws for me typically take 45 minutes to an hour and end with a room full of fascinated, frustrated phlebotomists apologizing profusely while they cover me all over with cotton balls and medical tape.

This time, I made sure I drank plenty of water coffee first.

At the appointment with bad-assed rheumatologist who ordered these tests, my impression was that he was generally satisfied that I had primary Fibromyalgia and was just going to check a couple of rare conditions to make sure they were not provoking the fibro symptoms. Hence, I was a bit surprised when he emailed me lab orders that looked like this:
Me: "It would have saved time if he had just had a 'select all' option."

Mike: "I'm sure he's just being very thorough."

Me: "Anti-Smith antibodies sound like something you would need in the Matrix."

Rowan: "Yeah, antibodies to keep him from doing that thing where he takes you over and you become Agent Smith."

Me: "Exactly. I might need those."

Rowan: "They are testing you for C4. That's cool! Actually, though it would suck if you had C4 in your blood and then you were shot because boom!"

I have certainly gotten a lot of lab ordered before, so I grimly accepted this reality and went, orders in hand, to meet my fate. I had never been to this particular lab before and when I arrived there, I was pretty focused on warning the phlebotomists that I was a hard stick, so that they didn't get all freaked out when they started dealing with me. But this turned out to be a very minor problem compared to their reaction to my lab orders.

At first the lab tech, a sweet-looking pony-tailed woman in her mid-twenties, sat down with a professional demeanor at the computer to review the lab-work that had been sent for me, but very soon her competent exterior began to crumble.

Lab Tech: "He must have like 50 tests ordered here! Is he crazy?"

Me: "Well, my primary care doctor did say, when he sent me to this rheumatologist, that this would be the closest thing to seeing Dr. House."

LT: "(pensively) I think I need to call the doctor's office and just make sure there isn't some mistake. I mean, what about your insurance? Do you know how much money this would cost? Did he enter all the diagnostic codes for all these tests?"

Me: "I don't think it's a mistake. He sent me a pdf with the written orders and they're all checked off. I brought it with me in case they didn't come up on your computer."

LT: "(excitedly) Can I see that?"

Me: "Sure."

I retrieved the lab order, and the phlebotomist studied it in disbelief.

LT; "He's more or less checked the whole thing."

Me: "I made a similar observation."

LT: "I have worked here four years, and I have never seen anything like this. Can I ask...what is wrong with you? I mean, what symptoms do you have?"

Me: "Well, I have fibromyalgia, but I had an unexplained hepatitis and pleurisy and I have some joint damage. I think they are trying to rule out conditions like Lupus or other mixed connective tissue disorders."

LT: "Oh...I guess that makes sense."

She made two calls, wherein she made several snarky remarks about the number of tests ordered being astronomical, and it was ultimately concluded that yes, my doctor did want for me to have all these tests, and that they would require about thirty tubes of blood. The lab could only take fifteen at a time, so I would have to come in twice.

LT: "If I take more than that from you, I'm afraid you won't be able to drive."

So, forty-five minutes after I arrived, they actually inserted a needle in my vein and, miracle of miracles, blood came out, and filled all fifteen tubes. (I tried my anti-Smith joke on two lab techs, but my level of geek was apparently slightly elevated above what could be appreciated in this situation.)

Image credit
LT: "You should definitely eat something when you leave here. Do you feel faint?"

Me: "Yes, but I always feel faint. That's why they are running all these labs on me."

LT: "Oh. I see.  Well, your doctor is being very thorough. The good news is you can feel very...umm....special."

Me: "That is a great relief to me."

LT: "Before you go let me get your urine test collection container."

Me: "My what?"

LT: "Oh, for one of these tests, you will need to collect all your urine for twenty-four hours in this container and bring it back to us when you come back for the other blood tests. You might want to plan on staying home that day."

Me: "I guess so."

Although, I could totally get another blog post out of what would happen if I took it to work with me all day, and that is unbelievably tempting. It's a full-time job being special.

If I come up with Anti-Smith antibodies, I'm totally going to assume I'm "The One".



Monday, January 2, 2012

How My NaBloPoMo Butt Was Saved Today By Aunt Becky's Meme

Let me start by explaining to you that I currently have a world class migraine. This sad fact should definitely exempt me from any expectations that anyone might have related to my actually posting anything today, NaBloPoMo notwithstanding.

However, even more sadly, I suffer from another chronic disorder, known as Compulsive Integrity Syndrome, the result of which is that it will still not be OK with me to have forgone posting, despite the fact that I can’t see normally out of my right eye and I have forgotten how to spell and understand English. Integrity is an asshole.

But all this is OK now because the brilliant Aunt Becky has posted a meme that I can rip off. It is all part of God’s plan for me. Thank you, Aunt Becky, for helping Jesus do his work.
This is not really Jesus. It's my husband.
1) What does Meme mean?
I have up until now assumed that everyone knows this but me. It is a word that sounds simultaneously pretentiously French and like an office store product. Perfumed French memo pads, perhaps.
2) 2011 – Was it all you’d hoped it would be? 
I can't answer this. I never bother to hope for years to have any overarching theme or progress. This seems like a recipe for disappointment. I can only handle life in week long chunks. This week I have been sick, so it sucked.
3) Did you watch the Royal Wedding?
I totally didn’t. I am the world’s worst girl. I hate princesses, weddings, hats, and TV. I will turn in my vagina tomorrow.
4) Where are your pants?
On my body, and, thanks to the miracle of Topomax, they now fit again. Actually, it’s more like the miracle of being taken off Amytriptaline. One pill makes you larger, one pill makes you small…
5) Is Justin Bieber human or some sort of robot?
I have three boys and no girls, which means all I know about Justine Bieber is that to look like him is to be marked for death. (I believe I may be missing some context.)
6) If you had only one thing to wish for this coming year, what would it be?
I wish that no one in my immediate family will develop any more specific mental or physical ailments. Mostly because I am tired of searching Google for prescription side effects.
7) Would you call yourself a “social media maven?”
Would that imply that I understand the difference between Twitter, Tumblr, a widget and a midget? Short answer: No.
8 ) If you had to take three things to a desert island (let’s assume you have ample food and water), what would they be?
  1. My medications (Oh, I’m sorry, is my fibromyalgia coming, too? ‘Cuz, if not, I’m totally OK without the meds.)
  2. The internet
  3. Awesome knee high socks
9) If you had the ability to banish certain offenses to an island where they would be rehabilitated into being okay again, what would those offenses be?
  1. Misuse of apostrophe s
  2. Watching reality TV
  3. Telling me, when I reference overwhelming observable evidence, that we are all entitled to our opinion
10) How do YOU think the air conditioner works?
My husband puts it in place, turns it on and fixes it when it breaks. That's all I need to know. Except that we don't have air conditioning.
11) Do you ACTUALLY think you can make money blogging?
I am still pretending that this will be possible. Many people believe in things such as Ouija boards, faith healing and the power of positive thinking. I believe in Internet Money Fairies.
12) There’s a lot of talk in the blog world about microblogging (The Tumblr, The Twitter, The Facebook) taking over traditional blogs. Do you think that’s the case?
I am too stupid to comment on this item except to say that I think that microblogging sounds like a clever terrorist scheme to spread Ebola across the internet.
13) If you could give one piece of advice to your younger self, what would it be?
Finish college, you asshole. Stop acting like you have all the time in the world to do whatever you want. You are just about to get sucked into the Mommy Wormhole and you will never get out again. Run for your life!
14) If you could’ve told yourself this time last year one thing, what would it be?
Fasten your seatbelt. Those pains in your joints are not just about to get better. And, by the way, good instinct starting that blog.
15) If you could have one Super Power, what would it be?
Completing an entire day of Google Calendar task lists without getting off the internet.
16) If you could do one thing you can’t currently do, and do it well, what would it be?
Remember how to take photographs. I mean, I got an A in a college Photography class. How is it that I can’t remember what shutter speed, aperture, and F-Stop even mean?
17) What surprises you about yourself?
That, when I allow myself to be self-expressed, I swear like a sailor and dress like a second grade girl stranded on Haight Street. Who knew?
18) What was your favorite blog post/tweet of the past year?
19) Do you REALLY think “Purple Should Be A Flavor?”
No, if purple was a flavor it would just be one more thing I couldn't eat or drink, along with flour, sugar, alcohol and dairy. Who needs it?
20) If you could make one outlandish wish for 2012, what would it be?
I want to be discovered and become a famous writer. Or just famous enough to replace my fast food worker instructional assistant income. Not that I’d quit. I just want to know I can. Because then my job will know I can leave anytime and will really want me, and that will make our relationship hotter and more romantic. I'm totally in it for the romance.




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Faith in Ambiguity by Tara Adams is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License