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".

King of Pain: thoughts on how pain shapes who we think we are

brain pain by Lukasz Szyszka

Pain is different than I thought it was.

I guess I thought it was just–pain. Basic concept.You step on a tack, pain shoots through your foot, you remove the tack, the pain subsides gradually. Even the more serious stuff doesn't seem very deep, except maybe childbirth.

Over the first thirty-four years of my life, the most memorable occurrences of pain have winnowed down to these three foremost experiences:

• I had a urinary tract infection at the age of sixteen that I so neglected that it went to my kidneys, and I ended up in the ER one night, on morphine for a kidney infection. It hurt in a way nothing, up to that point in my life, had ever hurt before.

• When I was twenty, I threw a match into my gas oven twenty minutes after turning the gas on, resulting in a fireball that left me with first and second degree burns on my arms, thighs and face.

• Over the course of eight years, I bore three children naturally and without painkillers, and the last of them unfortunately had to pass over a tailbone that had been made crooked by my middle child's having pressed his charming little fetal head there throughout my entire third trimester. (During that birth, which thankfully for everyone came last, I believe that I was actually pulling my hair and screaming that Mike should shoot me.) Luckily for me, that part was very brief, and then I ended up with a baby that some nurse was spraying down for twenty minutes with Lysol and a wire brush before we could have him. (And people wonder why I preferred my homebirth.)

All of these experiences felt like a test of courage, in some way. Intense, pulsing, consuming pain makes a worthy opponent. I especially remember the burn. At the time, I was about four years clean and sober, and I had often wondered if I would accept narcotic painkillers in the event that something happened to me.

It turned out to be a really stupid question.

When you feel like you are burning alive, which is what I thought I felt like, the option of turning down painkillers seems, really, like not an option at all. All thought of anything else aside, I was shrieking and begging for morphine and explaining that, due to my history of drug abuse, they were likely to need an increased dose of it in order to touch the pain. They kept giving me more and more morphine and Demerol and the pain kept not going away. Finally, after having lectured me that my screams were really upsetting the heart patients, they released me, still in great pain, but sufficiently exhausted and drugged that the pain felt somehow distant and I could sleep. (The next day, I flushed the contents of the bottle of Vicodin they sent home with me, just as soon as I felt merely miserable, and no longer as if I was constantly being licked by flames.)

Mike, Mikalh, and me (after the disinfection was concluded)

What all of these events had in common was that they were finite. They began and ended. They had a clear cause, and that cause could be addressed by medicine or by allowing nature to take its course. At some point fairly soon after they started, they were over, and the pain was all gone, or almost all gone, and I was the same person again.

In fact, in the special case of bearing children, I would say that I was actually a stronger person. I don't say much about it, because it it so personal and so fraught with issues of self-esteem, paternalism and choice, but I am an advocate of natural childbirth. The birth of my children, although painful, left me ultimately feeling powerful and at choice and taught me to know myself as a woman of more resource and fortitude than I had previously thought, which is exactly what I needed to know, as a twenty-two year-old near-child myself, to parent this tiny boy laid in an incubator beside me.

I could miss the clearly bounded confines of acute pain.This latest horrible bout of fibromyalgia agony that has grabbed hold of me, I find myself thinking that the kind of pain I find myself in these days is so very different from all of those. 

Finding words to describe it is like fumbling after something slippery, while wearing thick over-long gloves.  And yet somehow expressing it seems imperative.

Looking at life through chronic pain is like seeing everything through a carnival mirror. With work, I can still make out what is really there, but I am mentally exhausted from hour after hour of subtracting the distortion from pictures and trying to set them right. 

Pain starts defining everything, in spite of all my little measures to keep it at bay. At some point it just stops being "pain", in the way that "standing" is "standing" or "sitting" is "sitting". It starts to be Pain.

And it starts shadowing everything I do: walking up and down the hallways at work, pouring a cup of coffee, getting out of a bath. At any given moment, it is More Pain, Less Pain, Bearable Pain, Unbearable Pain, and I can choose to try and defer the presence of it still longer, allowing myself to continue functioning. But sometimes it becomes large enough that the deferral leaves me feeling like a zombie. 

The amount of work being focused at any given moment on not allowing that pain to form itself in my lips into a scream, or allowing it to let me collapse in public is starting to leave me feeling Empty, like a sort of carapace of human being.

And Life becomes this: doing things, completing tasks, laughing, watching TV, reading a book, loving my kids, doing my job, but all through a miasma of extreme discomfort, cascading through levels of tolerability from Almost Fine to I Think I'm Dying and back to the middle. 

This kind of Pain can start to change who you you think you are. My mother and husband have both looked at me in horror as I announced that I AM going to work today, although I can barely walk a straight line or stand up without holding onto a wall. But what would happen to me if I just stopped?

If I didn't show up for church?

If I quit my job? Or just didn't attend, day after pain-ridden day?

What would be left of Me, without the person that the kids at school call "Ms. Adams", the person who they expect to teach them and make them laugh, who they expect to be THERE and fully present?

How many people would remember to call or email me if I quit the church committee that I'm on? 

The Assembly Room at my church, where all the good stuff happens.

Here's what I have learned: I am who my community thinks I am. 

If I have to stay home with my Pain, I am afraid I won't end up being anyone but a reflection of that Pain and Doubt and Fear, all alone in my house, with no one to make me forget it, no one to need me or expect me to be there, at least for the hours school is in session.

So my worst fear right now is that I might be headed toward not being able to do my job. Monday I was asked to fill in on a duty, and I had to say that I just couldn't. I knew I couldn't stand for an hour. What will happen if I can't walk to classrooms to get kids? What will happen if I can't get up one morning? I should be able to get some kind of treatment and get better. But how long will that take? What if it doesn't work? 

What would happen if this was My Life?

I will only know the day that I cannot make my legs take me there because until that day I intend to try my damnedest to be the best of who the world thinks I am. If this is just a flare, I can outlast it as long as I hold onto all the important pieces of my life until it stops. So, meantime, please excuse my overly opinionated Facebook posts and my crazy knee socks and my rude humor.

I am going to remember who I really am. And, maybe Pain will bring me closer to who that really is.

So don't stop reading me just because I've temporarily become psychotic.

Do you know that classic Yiddish fable It Could Always be Worse?

No?

Well, I can't find a good link to it, so you'll have to remain ignorant. What were you, raised in a barn?

Fine. Here, is a synopsis from Sandi's Book Reviews with reference to the tale as retold by Margot Zemach.:

It could always be worse is a Yiddish folktale. "Once upon a time in a small village a poor unfortunate man lived with his mother, his wife, and his six children in a little one-room hut." Needless to say life was not easy in the crowded small hut. When the man could take no more of the crying and quarreling, he went to his Rabbi for advice. The Rabbi listened and thought. He asked if the man had "any animals, perhaps a chicken or two?" When the man answered in the affirmative, the Rabbi told him to "take the chickens, the rooster, and the goose into your hut to live with you." The man followed the Rabbi's advice. Life in the hut got worse and the man again visited the Rabbi. Eventually the Rabbi had the man take all the animals he owned into the hut with his family. When the man went back the last time to complain, the Rabbi told him to take all of the animals out of the hut. Of course, now it seemed quiet and peaceful with just people in the hut. "With just my family in the hut, it's so quiet, so roomy, so peaceful...What a pleasure!" said the man to the Rabbi.

This is my version today, which, unbelievably, involved, no poultry at all. And also, no rabbis.

Day begins at 5:30. Migraine is immediate.

I am recovering from a weird illness  and I am really, really tired, but, gratefully, I am a little better every day, so I am trying to be peppy. In an effort to move things in this direction, I have worn hot pink knee socks over black tights.

7:30 AM: Leave Child #2 at home, currently able to walk only with the use of crutches, and suffering from chronic tension headaches due to muscle stress and pain, to sleep. He is with my mom. Yay for moms.

(Yes, I am recovering from hepatitis for no reason and my son is a gimp. This is what my life is like right now. Don't judge.)

Out of time, so I decide to delegate.

Ask Husband and Mother to please coordinate how it will work for my Child #3 to be retrieved from school and by whom, how Child #2 will be transported to therapy appointment with Husband at 12:30 and how Children #2 and #3 will arrive simultaneously from separate locations, at Doctor's office at 2:30 for an appointment that will entail A) a re-check of sprained meniscus and B) flu shots for both children.

(Got this? No? Me either.


This appointment will likely involve Child #3 needing to be held down by multiple adults to prevent him from running screaming from the room.


Plus therapy and the evaluation of injury to my Soccer Star.


Kind of combo package.)

I ask Mom and Husband to PLEASE convey instructions to me on my part in this craziness. By way of text message.

Go to work.

Beat head repeatedly against computer screen as I try to understand how to use the latest version of Excel to do a task I have never needed to do before, using Mac OS, which I don't know how to use, and a server system that I don't understand, to do tasks that I badly needed to complete in the recent or ancient past.

Celebrate minor successes.

At some point, receive text from Husband with info on after school plans, which I think I understand. Race off to next obligation. Yay for husbands.

Image by Nate Steiner

Notice I have accidentally erased all of one student's data and replaced it with another's and that all of the spreadsheets are headed with the same teacher's name, inexplicably.

Call tech support, as directed by site IT personnel, to retrieve standardized testing data on my students.

Get hold music for five minutes followed by being hung up on, at which point I am out of time again.

Test three students, to discover, yet again, and with a still greater sense of urgency, that I need a time turner right now in order to be able to do my job because I cannot provide services to reasonably sized groups of children within the allotted time without it.

Perhaps the PTA would fund this purchase?

Blood pressure rising, rising, rising.

Return to data entry.

Remember to ask for help.

Receive offer of help from wonderful colleague, only to lose the use of my room due to complete wild card circumstances, at the EXACT moment that this help was available, so as to render it unavailable, while I have to wait outside in my hallway, helpless.

Fail.

O.K. I admit it. I am just not getting out of here at 12. But I can deal with that.

Call Mom. Tell her I have to work late to get some of this done, so she won't see me. She says, "Yes, but aren't YOU picking up Mikalh?"

SHIT!!!!!!!!!!!!!!!!

RUN down to his classroom five minutes late. Which, in the history of LIFE, I have never been, to get my kids because I am compulsively, hopelessly, irrationally committed to being early.

Feel my sense of self shatter into several small pieces held together under the barest veneer of shit-maintaining normalcy.

by MyAimisTrue

Get Child #3 to Mom. She drives off to get Child #2 to Husband.

Call Best Friend. Cry. For an hour.


Tell her AT LEAST I am meeting with the teacher who runs my program tomorrow at 10 and she will help me.

Piece the Shit together just a bit.

At some point, Child #2 is delivered home. And I plunk him back in the car and take him to pick up Child #3. Ask Mom to follow me to the doctor for 2:30 appointment, stay while Child #3 gets shot and take him away. There is shrieking and there is restraint, but, I was smart enough to have Mom bring her own car.

And she takes him. Bravo for moms.

(Then chickens start walking all over the kitchen counters!!!!!!!!)


Doctor says: Sprained meniscus now has fluid under knee cap, unexpected levels of pain.

Xrays.

Worry.

Orthopedic referral.

Tomorrow.

At 10. (When my life-saving meeting is.)

Got home at 4:30.

Too late to cook and get Child #1 to Tae Kwon Do at 6pm.

Eat out.

by ImagesofMoney

But my husband can go to the appointment.

So I can have my meeting.

But I feel like a crappy mom.

I miss when I just had the migraine.

The upshot is I think I believe in God now and that God wants me to give over trying to control anything and just ......

...........If you can answer the just, give me a call.

I will write something funny tomorrow.

I am thinking about writing a post on swearing. So don't stop reading me just because I've temporarily become psychotic.

The Mutiny of Self-Care

Medical Update: As usual, I should have listened to Dr. House. Because it seems like it really isn't fucking Lupus.

(not yet)

(...pretend now that mysterious, ominous music plays in the background...work with me...I'm trying to create a mood here, people....)

Now my liver panel has returned to normal. Miraculously. And without explanation.

Because really my body likes to play these practical jokes. Just to have a bit of fun, I think. Keep things interesting. I am totally NOT complaining. Having a liver biopsy is NOT on my bucket list. So, I am happy to skip that. It seems that the cause of the hepatitis will remain unexplained.  I will now commence getting better.

Here's the anti-climax bit to getting this news: I really felt like absolute crap yesterday. Worse than I did the day I went to the ER in the first place.

The thing about chronic, unexplained illness, is that you really get in your head about symptoms: It gets to a place where every bruise you have, every pimple, every dizzy spell has great diagnostic significance to you.

"I have a mouth abscess? But that is typical of lupus patients!...I wonder if this this visual disturbance is due to damage to the myelin sheath of my occular nerve...Oh, wait, there's an eyelash in my eye..."

I am not even going to go into telling you how helpful it is to Google things.

That is why people suffering from chronic, diagnostically difficult illnesses are always such assholes when friends, in a genuine spirit of helpfulness, offer up various illness their relatives have had that sound similar to what we have, or tell us about all the potential complications to medications,which, in desperation or blind faith, we are taking.

We already Googled that, folks. We're just forging ahead anyway. Gotta trust the doctors, because what else is there to do?

Please, don't answer that with a suggestion about blue-green algae, or I will be forced to take your life with my bare hands.

Anyway, I was telling my dad about all the horrible symptoms I have and it dawned on me:

This is a description of extreme, incessant exhaustion.

Perhaps, I just got sick and had to resume my normal activities before I was really ready, resulting in the fact that I am falling down tried. Could it be as simple as this? Looking in the mirror, I see a version of myself looking utterly haggard, with deep, dark circles under my eyes and pale skin. I just look tired.

Maybe I'm not dying. Maybe I'm sleepy.

Anyway, I was directed by my husband to stay home from the trip to Bernalillo and rest today, to try and recover. This is how this is going: I woke up at 7:30 anyway, came downstairs, drank coffee, lest I suffer the horrors of a caffeine withdrawal-induced migraine, figuring I'll go back to bed after, but I can't get sleepy. I can hardly walk a straight line, I'm so tired, but I am not SLEEPY. FUCK. I have cooked brown rice and frozen it in bags. Boiled eggs. Made shopping list. Kitchen is all fucked up now. Sent email. None of this is physically exerting. Maybe I can go to bed now?

When I wake up, my kitchen is going to make me cry. There are costumes and Halloween make-up strewn all over my living room. My mom has my little one, and I feel guilty that she does. I should let her bring him home. There are two bales of straw on a ten by ten plot of horse manure sheet mulched for next year's permaculture experiment. I need to wet it down and spread the straw. I have to shop tomorrow. I have to plant 200 tulip bulbs because it will be too late before I know it. We have to clean the house.

It takes a lot of will power to go back to bed, despite every trash-talking voice in my head that's trying to make me get up and clean the kitchen.

Do you know, do you really know how HARD it can be to do what people call "take care of yourself"?

It just rolls right off the tongue, but it feels like an act of mutiny.

Where is the Mason-Dixon line between a self-realized, empowered woman who models caring for herself and a selfish, self-involved, neglectful mother and derelict, needy wife?

Between a vibrant, happy mother- member of a multi-generational family, letting a grandmother involve herself in her children's life and a selfish, self-centered grown child, taking advantage of an older woman, never having time to give back to a mother who needs her?

These are the questions that keep me downstairs, scrubbing the fucking kitchen when I feel like I am going to cry from exhaustion. That generally keep me from calling my husband home from work when I am having trouble standing up long enough to make dinner, and I know coming home early means he has to work late from home later.

Taking from others when they never have enough to give themselves either.

I don't do it for the martyrdom, I do it for the peace of mind. Because I would rather be boiled in a vat of hot oil than feel like I let my family down. I hate exhaustion. But I hate guilt even more.

I guess that makes me one mentally deranged woman, but I bet I'm not the only one.

Here's my compromise: I get to say what is true for me. Into the public world. As an act of faith and beauty and truth. If I can't give the world as much time or money or help as I want, I can give it my words, as a mirror of what's in my heart and mind. Whatever makes me laugh, or cry or think.  I get to be true to myself. Publicly. Wear what I want. Say what I want. Be who I really am.

And, after I have sat down to do that for half an hour, I will go back to taking care of what the world needs from me.

Dark Path Through The Woods

So, briefly, it turns out I don't have Mono. There is, in fact, an exhaustive list of things I don't have, which includes hepatitis A-Z, copper something, iron something, autoimmune hepatitis and rabies. Et cetera.

I did once have Epstein-Barr, the virus which causes Mono, but I don't actively have it now. I don't take medications or supplements which would cause liver problems. Ultrasound shows somewhat enlarged liver and spleen. The liver enzymes taken last Wednesday were somewhat better than the ones taken that Sunday, when I was in the ER, but still high.

My doctor ordered more liver blood tests, for which results will be in tomorrow morning. If they are still high, I need to see a liver specialist, and likely, have a biopsy. If they are normal, then we might consider the fact that I have unexplained hepatitis a fluke caused by some unknown factor, perhaps a virus?

In the background looms the specter of Lupus. The following evidence exists for this diagnosis: widespread body and joint pain, mild fever at last doctor's appointment, pleurisy in the ER, elevated muscle enzymes, elevated liver enzymes, enlarged liver and spleen, positive ANA (which is a blood test that shows that your body's immune system may be attacking healthy tissue, but sometimes healthy people have positive ANA).

But, it is really hard to get a diagnosis of Lupus. I believe it takes an average of ten years to make a diagnosis. And it's kind of a crappy disease because it's chronic and incurable, although somewhat treatable and very rarely fatal.

Anyway, although I suspect Lupus, and my doctor suspects Lupus, we know I don't meet the criteria for that diagnosis, and we don't actually know what the Hell is wrong with me. Which CERTAINLY might be something besides Lupus.

Who knows?

I have learned not to get overly squirrely about these pleasant doctor's visits, but I think this much is clear:

It is time to make a Plan B for the exteme likelihood that I will continue to suffer from chronic conditions that flare not too infrequently, requiring major adjustments to all facets of my life. It is time to stop acting like this is just about to be over any minute now.

I am OK.

I just feel like I'm staring at a dark path through the woods again.

My body and I just have different needs.

Wow, it's been long enough between posts, I could almost imagine you missed me. What's up with you?

Here's all my down-low:

So, my eldest son, who is fourteen, saved up all this money for his own I Pad and was all "How cool is that? My son works hard, saves money, defers gratification, keeps a goal in mind, gets what he wants. He must have an excellent mother. I can totally see Harvard in his future."

Fast forward two weeks. I now live with Smeagol and his Precious.

I think I may have finally convinced my child that just because he purchases something with his very own money using his very own debit card does not mean that he can use it at all hours, for as long as he wants, doing whatever the fuck he wants. I had to be a bit of an asshole about this, but there it is. We have never owned a gaming system. We don't have cable. We are not "those kind of people". Hence, I am DAMNED if my child is going to spend all of his free hours playing Fruit Ninja. If he wanted to learn how to program, or read i Books, I'd be somewhat more permissive about screen time (since it would allow me to keep looking good as a parent to myself).

In other news, I have been spending a  lot of time feeling like crap. So much so that I am running out of things to write about, since most of my thoughts relate in some way to feeling like crap and I get tired of writing about it. I think if I could generate a large following of crap-feeling people, this might be OK. To everyone else, it may get dull. I will spice things up by swearing more.

And so on.

So, on Sunday, after church, I ended up in Urgent Care because I had chest pains. My chest pains were more Mike's problem. I was more concerned about the fact that my vision was making me feel like someone had slipped a half-hit of acid into my morning coffee. Lights were flashing, I had tunnel vision, an odd sensation causing various inert objects to appear to be peacefully moving, and the edges of everything were blurred. This is what is known to migraneurs as aura. A particularly acute aura accompanied by the real concern that I might fall over due to dizziness and lack of vigor. Urgent Care sent me to ER because they wanted to know if I was having a pulmonary embolism. Which I wasn't.

Chill, people.

Anyway, after spending hours patiently waiting and having my arms repeatedly poked due to my usual lack of usable veins, the doctor declared that I was not having a heart attack, stroke or embolism but that my liver enzymes and muscle enzymes were unusually high, and I had pleurisy (which sounds like a crude insult or a form of government). He let me know that I should see my regular doctor to find out what was wrong with my liver.

So, hi ho, hi ho and off to work I go this week. I was more or less fine yesterday (if your standards are appreciably low), but today I ended up feeling I was wearing those invisible psychedelic glasses again, so I went home early. I went later to the regular appointment I had with my doctor and got to tell him all about how I spent my weekend. He is a very good listener.

After he had listened, he said that the most likely cause of all of this fun is mononucleosis. Which is what you get at summer camp when you are thirteen and kiss the greasy boy with braces down by the canoes.

This is Mono. Kinda cute, huh?

Apparently, it is less usual but not totally impossible to get it at the age of thirty six, as well. So, here's hoping I have mono because all of the other things that would explain my problems are much less tolerable and longer lived. I donated six vials of blood to the medical laboratory, strictly for the purposes of advancing scientific inquiry you understand, and I get to have a liver and spleen ultrasound on Saturday because both of these organs are enlarged. Which, apparently, is totally how things go if you have Mono.

All of which leads me to the definite conclusion that it is time I broke up with my body. This sack of bones has got to go. Ever since it produced three wonderful children, all it's done is piss me off. It has gained fifteen pounds as a side effect of the medication that makes all the horrible, nasty pain go away. It has swollen lymph nodes, irritated organs, multiple chronic conditions, and it does NOT want to run!

My body and I just have different needs. I think we'd be happier living apart. (No, this is not a suicide note. I want a goddamn new body.) Kind of like a cylon.

So, anyway, if you see my body somewhere anytime soon, tell it go fuck off.

Love,
Tara

P.S. And tell my son to get the Hell off his I Pad and study his chemistry so we can visit him at Harvard. (If we visit there while he's attending NMSU, people are just gonna think we're lame.) And it's all about the public, people.

P.P.S.: UPDATE: This is FUCKING awesome! There is actually a symptom associated with Mono (and migraines) known as Alice in Wonderland Syndrome. How totally brilliant for me! I have been waiting for such a thing all my life. At least I can stop accusing my husband of dropping LSD into my coffee now. Wow, tracers!!!!!!

Run for Your Life

I am no athlete.

There are only two sports in which I have ever competed, and both of these were in middle school. The first, oddly, was girls' wrestling, which I was actually quite good at.

The second was track and field. I was, in middle school and in high school, exactly the kind of PE student that teachers hate. I walked around the track, rather than ran, was totally indifferent to competition, acted half-asleep on the fringe of every game, and managed to wear a skirt nearly every day to P.E., resulting in my "having to" sit out.

But I loved the 100 yard dash. Just for that few seconds of time, I had wings.

Distance running for me, made me feel like an anemic elephant, wearing leg weights and a tight strap around the chest, but sprinting felt like I had become one with the wind. There was no real pain involved because the run was too short, and, afterward the rushing blood pumping through my system was an opiate.

I never made the transition to real runner, but I never completely got over that feeling.

During my adult life, I have often had a gym membership and enjoyed using a tread mill (to walk or do run-walk intervals) and lifting weights. It stuck in my craw that I couldn't run distances, and so I tried it again in my mid-twenties, chasing that runner's high and sense of personal victory. My chest heaving with strain and a burning, searing pain tormenting my leg muscles, I ultimately worked up to, at most, a mile. My knees hurt like hell, so I hired a personal trainer to help me figure out how to fix whatever was causing the problem. She had me do ridiculous amounts of quad exercises, but the knee pain didn't improve. I crapped out. I hate suffering. I just won't sustain it for very long if I see any out.

For a few years, I was in the habit of getting up early every morning to do Pilates or cardio kickboxing with a DVD before showering for work. This impressed lots of non-exercisers since I was, at that moment, the "good girl" that they could not relate to, but, for myself, I was busy envying the women who run.

In Los Alamos, running is the thing to do if you want an in with a wide social network of women. They kept showing up on my Facebook page, beaming in cool pink technical t-shirts and glowing, apparently, with the deep satisfaction of not being me, a person who could NOT run.

As I was busy exercising and being envious, my work-out regimen hit a major roadblock. I developed severe seasonal allergies and spent the next two years having an almost continual sinus infection with associated asthma attacks. I had asthma symptoms in the cold air, wherever there were pollens, wherever there were chemicals, if I exerted myself and, sometimes, for no apparent reason.

It was nice to finally have an asthma diagnosis to explain, at least in part, my life-long cough and hatred of extended cardiovascular exertion, but every time I got a bit well and attempted to develop an exercise routine, I would get yet another sinus infection or asthma flare and get benched again due to feeling like utter crap. Finally, I decided that sanity in this case would take the form of waiting to see if my conditions would improve, over time and with treatment, enough to establish an exercise routine and stick with it.

After two years of allergy shots and lots of albuterol, things improved.

So in the late winter of 2010, I took a leap of faith and started trying to learn to really run. I had a wonderfully patient friend, Shana, who ran, and she helped me to take baby steps toward becoming a runner. The most surprising thing I learned from running with her was that I was trying to run too fast. (Don't laugh. It was too fast for ME.) If I could tamp down my body's overwhelming desire to run something closer to a sprint (well, maybe the sprint run by an especially speedy tortoise), I learned I could maintain a run for some period of time.

Ultimately, with practice, I could do it for a 5K distance. That meant I could actually run with other women, which gave me the benefit of an expanded social life along with my exercise. I even ran two 5K races, where I worked hard enough to feel afterward that I might throw up. (The split was just a bit over a ten minute mile, which is laughable to a competitive runner, but hugely cool for me.)

Being able to do that felt like an enormous improvement on the lazy mid-schooler who walked stubbornly around the track.

Then, close to the holiday season of that first running year, as the bitter cold of winter set in, I started having increasing pain in my joints. The pain spread into my muscles. And so on.

I was in pain every day for a good long time. On top of that, the cold was really fucking with my asthma, as improved as it was. I felt defeated. I had migraines a lot, and all sorts of other pains, and running just hurt.

Even with all that pain, I really did not want to walk away from what felt like this huge triumph over the past, this feeling of having wings.

Ultimately, the rheumatologist I saw said that I should stop running, at least until we knew what was wrong with me. I admit that I felt some relief just being able to say I had to stop for a while, as it sort of implied that I might be able to start again later, and I was sick and tired of bailing on running dates and wondering if I should have pushed myself and gone.

No matter what, I had been feeling screwed. If I ran and had to keep stopping to walk, I felt like the biggest wuss in the group, and also like I was holding everyone else back. If I toughed it out and kept up, sometimes it would work out, and other times I would face the rest of my day in a haze of exhaustion with shooting pain in all my joints. If I canceled, I felt like a flake. Everyone was nice to me, but I still felt like I was always doing the wrong thing.

Last April, a neurologist prescribed a drug for me, Amytriptaline, to treat what he called "neurologic pain" in the form of both migraines and myalgia (muscle pain). He was the first person to say with confidence that he knew what was wrong with me, and thought he could help me. After countless previous doctor's visits, yielding nothing but more referrals, it felt like a life preserver was finally thrown out.

And the drug started to work.

It would not be an understatement to say that I feel like taking it gave me my life back. This sounds ridiculous because I currently suffer migraines on approximately half the days of any given month, but the muscle pain, exhaustion, and mental fogginess that had reduced my life to an attempt to survive every day faded away.

By the start of this summer, I was ready to try and run again.

Working back from the ground up after a break of several months has been a trial by fire for me mentally. I have to confront the ground that I have lost, the distances that were once easy and now were way too long, and the fact that I have to stop and walk or fall back and quit early when others run on.

All of this, inside my head, is difficult to face. I have tried running alone, with my dog and a Garmin to help pace me, and I have learned to almost enjoy it, but I always end up running faster than I can sustain, and I crap out easier without the social pressure to keep on. I have put running in my calendar in several places every week, but I always find it hard to keep on track. An existence punctuated by frequent bouts of migraine pain and exhaustion, and lots of regular responsibilities does not facilitate fitness integrity, it seems.

It's frustrating and satisfying by turns. I love when I can suddenly see the ground I have taken. I hate when all I can feel is the discomfort and strain.

As much as I want to be well enough to do this, one thing I know now is true is that I am not yet well enough to do it the way I want to. I want to be able to run a steady pace 5K with relative ease, to keep up with the group, to be 100% reliable for being at all my runs every week.

Right now, I just can't get there. And I can't figure out if my problem is at least partially mental, or whether it really is too hard to run four times a week, and do Pilates three times, while working and having fifteen migraines a month. When I read this back to myself, it sounds like a lot of feeling sorry for myself, but there it is. That's what I feel.

Maybe only another person who suffers from a chronic painful condition can really understand the mental battle that gets fought here. I am trying to prove to myself that my disorder can't make me give up what I love in my life. Simultaneously, I am too tired of pain to fight with my body all the time and make it do what it doesn't want to do with consistency.

I don't have an answer. Today, I almost feel like giving up again, since after this last bout of severe migraines, I can't seem to get my energy back. All I want to do once I get home from work is sleep, despite getting seven to eight hours in bed every night.

One part of me says that this is just how I feel this week and tomorrow might be different, next week might be different. Don't give up. Be satisfied with doing it half-way. Anything else is my ego talking. But another voice says that my problem is that I don't push myself hard enough, that I'm not doing it right, that I'm making excuses.

Who knows where the truth lies. All I want to know is that I am always hoping that I can return again to that feeling of having wings, even if it is interspersed with a bit of pain. I also want very badly to be a runner.

I have a feeling that the only way out of this mental turmoil is through a hard won acceptance, the peace that is a product of ambition tempered by years lived beating one's arms uselessly against the tide as it insistently crests and falls upon the shore.

The question is:
If I stop fighting the power of the wave, will it drown me, or carry me gently to the shore?

Now That I've Been Beaten All Over With Sticks, I Guess It's Time to Go to Work

I got a stomach bug Monday morning. Or maybe Sunday evening. In any case, I have been home sick with it since 10:30 Monday. Except, perversely, it seems to have done nothing more than completely scramble my nervous system, triggering a resurgence of all the fibromyalgia symptoms which have been blessedly absent the last several months. So, I feel like my ears are filled with cotton, my eyes are not working correctly and my brain is functioning about as well as if I have been slipped maybe a quarter of a roofie with my morning coffee. I have pain which feels vaguely like someone has tried to insert a steel rod through my spinal column without anesthesia. And I hate everyone.

But, at least I didn't throw up.


Something about having had this all respond to treatment and fade into the background of my consciousness, makes feeling it all again even worse. I guess I feel like Life has betrayed me, or I am being punished for something that I want to argue I never did. If I was just barfing, that would seem fair. But the fact that some virus has entered my system, and, aside from producing indigestion, just screwed up the whole works, seems monumentally arbitrary and capricious.

Plus my poor husband is also sick, with a bad head cold that won't go away and somehow that makes me feel like I am tightrope walking with no net.

I don't really have a punchline for this.

I just want to complain in some safe way because the rest of my day will consist of trying very hard to appear as if nothing is really wrong, while doing all the things that have to be done. Not that I want everyone all day coming up to me to profess their sympathy. I don't. I just want to mark it down somewhere that it sucks having this disorder. I want to give up and go back to bed, but I am not willing to suffer the consequences of doing that today. I need show up at work, to see the kids in my reading groups, to take my oldest son to his appointment in Santa Fe, to restore a sense of normalcy to the week.

But if you want to feel sorry for me from a distance, feel free. I'd appreciate the love.

Why I Need to See Dr. House and Why Nothing is Worse Than Being Mauled By a Tiger

 Photo source unknown

I have worked on this post, on and off, for several months now, and I have concluded that no matter what I do with it, it still sucks. However, I am going to publish it because it represents the only writing outside email correspondence that I have managed lately. I find that it sounds a great deal like whining, and perhaps it is. But it is what I am processing internally. I usually get past whining at some point, but, at this particular moment, whining is all you get. Here it goes:

A few months ago, while running alongside other obviously mentally ill women avid runners in the pitch dark of 6 am at temperatures of well below freezing, it occurred to me that the fact that I am in chronic, increasing pain when using my hands and feet may be indicative of some actual medical problem, which could perhaps be understood by advancing medical science.

For years, I have made these little adjustments for my pain, getting my husband to make the bed because pulling and tucking sheets sends pain shooting up my fingers (and because I hate making the bed), wearing two pairs of gloves when running in the cold since the cold makes my joints ache, getting people to open containers etc. Years ago, when I first tried to start running, I hired a physical trainer to help me adjust my stride to avoid knee pain, and then finally gave up. I was about 28 then.

I've had knee pain since I was 21, at least, and it just gets progressively worse. I have tended to generally ignore it as best I can. I have been told this is an effective behavioral technique for annoying children, unwanted news stories and non-catastrophic illnesses.

That may sound crazy or irresponsible to those of you in excellent health, but I have been managing chronic health conditions of one kind or another for many years, sometimes without insurance, and this has had the effect of making me rather judicious about what concerns I will actually pursue. Also, I have a hard time trusting doctors, although I generally am a great believer in science. This is due to a host of difficult experiences throughout my life.

For instance, I developed thyroid disease when I was eighteen, with a TSH so high that it was over 700, which is crazy. (It should be under 5.) At the time, I was newly sober and taking anti-depressants and my doctor treated me as if every problem I had was mental. Despite presenting a textbook case of hypothyroidism, all anyone wanted to do was adjust my anti-depressant. I could hardly get out of bed, was freezing cold in summer weather and generally felt half dead. Planned Parenthood eventually diagnosed my thyroiditis after I actually started lactating due to my endocrine system completely having blown its gasket. (Keep that in mind if you happen to think Planned Parenthood isn't a vital service for the women who use it!)

Subsequently, doctors treated any complaint I might have as symptoms related to thyroid disease. When I think back, I went to a doctor in my very early twenties complaining of foot pain, joint pain, exhaustion, and the doctor said, consolingly, “I think your major concern is that there is something wrong with you.” DUH. Now, my doctor says I have foot conditions that warrant seeing a podiatrist and blood tests and other symptoms which may, or may not, suggest an autoimmune disease. So, was I making this stuff up before, or have I simply been able to manifest actual physical symptoms through the power of my maladjusted mental state? Later on, I had three difficult pregnancies, with cramping, preterm labor and a host of problems getting my thyroid in check. All the drama associated with being a faulty incubator kept me medically busy for years.

Then, a couple years after I moved to Northern New Mexico from Northern California, I developed horrible seasonal allergies.

These were seasonal in that I had them during every season of the year.

I had breathing flare-ups which led finally to a diagnosis of asthma (which in my childhood had been dismissed as psychosomatic coughing) and sinus infections about once a month on average. The sinus infections lead to migraines, which then became chronic and still average 10-20 or even more in a given month. During this time, I saw an allergist regularly, an ENT, a sleep doctor and ignored a referral to a neurologist, alongside constant visits to my regular doctor to obtain more antibiotics. After two years on allergy shots, my allergy symptoms are now manageable and sinus infections down to a couple times a year. I have learned how to manage the improved asthma. So, I started running.

Then, with running through my first winter, suddenly, I had this noticeably worse joint pain. Right about when I decided to finally address this, my neck started causing me terrible, intermittent pain. Then muscle pain started shooting all over my body. I could go on, but it isn't really all that interesting. So, in my current adventure, of not being able to find out what is wrong with me while visiting lots of doctors, I will offer the following ruminations I have been contemplating:

Here are some things you have to start thinking about if you are suffering from an unexplained, chronic illness.

Question #1: At what point would I actually collapse?

Photo-Exhaustion by John Athayde

Usually, in my experience of workouts, I stop running long before I am in danger of actual collapse. Something tells me that this is too much and I begin walking instead. Most activities are like this, approximately, with me electing to stop before anywhere near danger of a dramatic physical response. Perhaps even not pushing myself enough.

But now that I have experienced having to drag myself through my days on what feels like will alone, through pain that would otherwise make me sit and cry, exhaustion that makes it hard to keep my eyes open, and/or dizziness that causes me to nick every neighboring surface with my hips over and over-I don’t know when to stop anymore. My body displays these bizarre symptoms and my head repeatedly tells me “Something is VERY wrong here! RED ALERT! RED ALERT!” However, either because I can’t get a call back from a rheumatologist or because my next appointment is in three months and that was hard to get, or because I have run through all my sick leave, or because a course of prednisone and some pain meds did not make this go away, or because the anti-inflammatory medicines that allow me to manage my pain are making me nauseated, I can’t keep listening to my body.

I suppose I COULD, but, if I did, I would certainly not be at work. I would not be running kids hither and yon to soccer, choir or doctor's appointments. And I just can’t see putting everything on hold indefinitely when it may be weeks or months that I have ahead of me, getting through this. (Also, I suffer from a terrible, oppressive boredom during what other people lovingly call “rest”.)

But, again, where that leaves me is that I don’t really know how far I can push this sack of bones. How much can it do on the insistence of my mind that it continue? So far, it can do waaayy, waaaay more than I ever suspected. I t turns out I can generally work from 7:45 to 3:30, make my kids’ medical appointments, church business and basically maintain my home routine, with slightly relaxed standards. Which leads me to question two.

Question #2:Is everything really as relative as it seems, and, if so, can I alter this whole thing purely through my frame of mind?

This question arises in the face of things like a "pain scale". Please see Allie Brosh's post on this for an assessment of the usefulness of this tool: Here

How bad is the pain? Compared to what? What I think would make life tolerably pleasant? Compared to giving birth with no pain meds while your tailbone is broken? Compared to being mauled by a tiger? I always give it something like a five. Eight if it makes me cry. Nothing is worse than being mauled by a tiger. I reserve my ten for that.

Additionally, pain and other symptoms always get worse if I pay close attention to them. This being true, I stupidly cannot answer a multitude of questions posed by physicians on my condition. Is it worse when you first get up? Or when you become active? Where does the pain center? Do your hands turn white before they turn red and blue in the cold? Then, after each appointment, I have some new set of symptoms to pay attention to, so that I can answer correctly about them next time, and, naturally, they feel worse as a result. Being very smart, and then notice this is all very relative. Which entices me with the prospect of returning to ignoring everything I can about what is going on, in the hopes that this will make it better. It would certainly be less time-consuming.

This coming Tuesday I have a neurology appointment, the theory being that perhaps having double digit episodes of migraines monthly may have screwed up the pain centers of my brain. I am so hoping this is it, and that some new prescription can prevent the migraines.

At this point, I really want some answer. Even more than the symptoms themselves, I think I hate living with this concern that there is nothing wrong with me that anyone will be able to fix, that I will continue to feel like crap but that everyone will think it is all in my head.

Where’s Dr. House when you need him?