Wednesday, August 01, 2007

Too much of a good thing and the human body: Hump Day Hmm 8-1-07

It turns out that the human body is a fragile thing, delicately connected through balanced and interdependent systems. If one domino falls, the rest will collapse inelegantly behind it.

It turns out that my body has done this.

It turns out, that despite modern advances in medicine and many tests, we will not know why this has happened, and my doctor tells me, in fact, we are not even really sure what has happened.

We can, it seems, only see the effects, and treat it as best we can, piece by piece, that way, and cross our fingers.

Cross our fingers.

Cross our fingers that if we shut down the system and reboot, it will come back up working properly.

I'm not a big believer in luck. Luck to me is the popular kid who only notices me when she needs answer to homework, which isn't very often because luck is quite bright enough on her own.

When luck grants me a favor, she is quick to ask for payment. Have a baby, lose a cat, for example. In order that I see proper balance in the universe, luck usually extracts payment in a very timely manner.

Like doctors. They tweak you, test you, make you wait hours in a close room for minutes of their time, and then they bill you exorbitantly for a lot of "we don't knows" and "we're not sures" with a few answers dappled in among additional "we'll try this, see how it goes, and decide what next from there."

Unlike many people, I know medicine is an art, not a science. There is science behind it but its application is an art. This makes its application subjective, both from the artist and the viewer's perspective.

Sometimes the artist titles the work: tumor, cancer, Cushing's syndrome.

And sometimes it is simply: disease number 4,523,765

So you start researching using the specifically named parts of the body that have failed, gotten out of balance. You see their interconnectivity and you understand the artist lead you on a merry chase of interpretation because, after all, there is a name.

And despite warning bells ringing in your head---reminding you that knowledge, like anything, can be too much of a good thing---you employ your PhD in Google and find many possible names.

Despite the fact that your body is behaving as if it has a tumor or three, none are visible. We can only see the effects, not the cause.

But the first course of treatment, anyway, is to treat you as if you have a tumor, one of the many -omas.

The doctor tells you this is the first low dose of a treatment that we increase 4 times. It is the first medication in a series of medications. He uses words like "good chance" and "long haul."

You sit there and are simultaneously relieved and horrified after a three year journey that began nearly twenty years ago to finally have an answer. But, like knowledge, answers can be too much of a good thing. They can be a mixed bag.

And without an easy label to affix to your knowledge and answers, you can't explain to people easily why you are no longer the person they once knew and counted on. You can't even explain to yourself, even though you can feel your body falling apart from the inside out, even though a specialist has taken two hours to explain it to you, even though twice a week you get the medication...even though the evidence is all around you and has been for some time.

You don't have an easy word to reach out and use when you need to, like an excuse, "Gee, can't do that neat thing I'd normally enjoy, haven't got the energy, I've got That Disease," and everyone will nod understandingly.

Instead you say more and more often that you are busy or have other plans, which in your life is code for cannot move my body any more.

People can see your symptoms sometimes---blood shot eyes, scrunched up pained face, bloating, breakout, loss of hair, pale, circles under eyes, low appetite due to nausea or excessive appetite due to three or four other possible causes---but these are all normal in and of themselves, and often get a, "Oh everyone has that happen..."

You begin thinking of yourself in total contradiction to your usual self-image, using words like lazy, weak, lame, disorganized, and dull sometimes, the times you feel frustrated and down---you know this is a bad way of thinking and so you tell yourself to buck up. As with knowledge and education, sometimes thinking can be too much of a good thing.

The rest of the time, you either feel better so it is easier to keep proper perspective or you find a well inside that is full enough.

On days you have energy and feel okay, you are maniacal in your diving at tasks. You organize your life around the times of day you are most likely to have energy and try to cram everything in that period. Sometimes this means when things go off course, you feel them more keenly than you ought just because you know how limited your resources are.

A lot of the time you feel impatient. Impatient for the cure to work. Impatient to get back to your old self. Impatient because you don't feel as capable as you expect yourself to be.

This ebb and flow of sympathy and impatience is evident in other people, too. We all have such a limited attention span, such a limited patience for things out of the ordinary, good and bad. But especially for bad, because it makes us uncomfortable. We're wary of bad, never trusting that it's not catching.

I've left out a lot of this story, because sometimes information can be too much of a good thing. I've strung symptoms together for curious friends and had them say, "Oh but I have a lot of that! And I'm fine!" or "Oh...but I have a lot of did you know that it meant something was wrong?"

Whenever something extraordinary happens to you, it instantly provides a mirror for other people to view themselves in. There is a wealth of reactions people have to this self reflection. Some get caught, narcissus-like, in the gazing at themselves and forget the point was elsewhere a minute ago. Others get angry, not liking what they see, and direct their ire to you for forcing them to look. The very special ones gaze, find something meaningful, or nothing worth pondering too much, and look past it back at you and the world around.

In the same way you often find yourself at a loss so too do the people around you. Everyone keeps waiting for the end, one way or another, so things can get back to normal. You look and sound so much like your same self. And although sometimes you are opacity 35%, other times you seem perfectly normal, opacity 100%. This must mean it's all getting better, and soon you will be fine, back to normal. This provides a light at the end of the tunnel for everyone, so we can see the end point of necessary tolerance, which also fades in and out in opacity.

The ones who Do It All For You, especially behind your back, piss you off but you bite your tongue because they Mean Well. You remind yourself this a thousand times despite the rude presumptiveness of it, and its patronizing implications, plus the judgmental conclusion of your incompetence, which you haven't been able to decide for yourself.

Loss of choice is just one more symptom of chronic disease.

The ones who wait for you to ask, direct, and guide can also be frustrating, especially if they don't tell you they are waiting.

In short, you see either the problem lies with you or everyone else in the world. You know which is more likely.

Therefore, you bite your tongue more, swallow often, and fight through the haze to the Good Perspective, which at times you distrust since you worry you overcompensate on understanding.

So here I sit, with this thing, this unnamed thing that has affected an entire system of my body, has affected my entire life---mind, body, spirit, self-esteem and image---and the lives of those around me who depend upon me. This thing that challenges me, my loved ones, and everything I've ever thought. It challenges my ability to forgive---for example, all the doctors who dismissed or misdiagnosed me---and let go. It challenges my belief that although sometimes we will never know why, or understand the plan, sometimes we have to have faith, and do what we can to cling to making something good.

Every time I try to talk about this, I feel like it sounds like so much melodramatic tripe. Which, by the way, is the same cause for concern that had me accepting the medical dismissals and misdiagnoses.

This is the favored diagnosis of women by male doctors, I think: hysterical. Only these days they call it by its modern incarnations: stress, depressed, eat healthier lose weight exercise more and all will be well because the rule is that you get out what you put in, right.

My doctor has warned me that this is a long journey, this trying to salvage and recover these tiny but very significant parts of the body. How often do you think about the importance of your endocrine system? I imagine like me you take it for granted. He has warned me that he hopes I'll begin to feel a little better in a few months, but there is still a long road ahead of that, how long or where it leads, he doesn't know yet. It all depends on what we can recover, how well, how I respond to medication and so forth.

But, now we finally know why I had infertility. This is both wonderful and dreadful all at once. Fulfilled wishes can sometimes be too much of a good thing. We also now know I still have infertility, and the doctor told me, kindly, yet firmly, that my baby-making days, due to this disorder and my advanced maternal age, are behind me.

One more loss of control and choice. Believing that we have control and choice can sometimes be too much of a good thing. My body and I---once in lovely harmony together---have been discordant for a while, worse currently. It is something, this loss of trust of self via physical body.

I have created a careful balance that doesn't leave much room outside my home and the important things within it. It is hard for me to grasp and hard for others to grasp. Some days it feels a bit like a prison sentence. Like the doctor, I play it by ear and fly by the seat of my pants. When I plan things in advance, I do so cautiously with caveats in case I have to cancel. Right now, I grudgingly accept that I have to take care, which might mean myself at the expense of something or someone else.

And such is life at times.

This too shall pass.

There are many morals to this story.

1. Trust your gut, not some chart. If you feel sick, it doesn't matter what a mean, median or mode says. Something is wrong.

2. If you can't advocate for yourself, get someone close to you to do it for you. It was easier for everyone in my life to pretend this was just some little thing I just needed to get over, apparently including the doctors. I felt so alone, already run down, and unable to fight on my own. I needed to ask for help. Ask for help.

3. Tell the doctor you will respect an "I don't know" as long as it accompanies validation that he or she respects your diagnosis that something isn't right. Tell the doctor you kick the ass of anyone who is arrogant enough to believe a piece of paper over a person.

4. If I wasn't a mom, I might have fought earlier and harder. But too easily we focus on our kids, not ourselves. Airlines always tell us to put our own oxygen masks on first. We rarely do, though, because that instinct to protect, even sacrifice ourselves for our children is so strong. But the truth is that our kids don't benefit from us throwing ourselves under a bus. Sometimes love can be too much of a good thing.

5. If I wasn't a mom, I might not have pursued this. I knew I wasn't able to keep up with parenting like I needed to. Also, it's possible that pregnancy---likely even---exacerbated this, finally making it visible.

6. Things don't always pay out according to effort.

7. We don't always get what we deserve.

8. Nothing is black and white. Even if someone is unable to be there as a friend in one way, it doesn't make the person a bad friend or person. We have to play to strengths and understand gulfs of gray.

And so many more. So many.

The bottom line here is that balance is crucial. When one part of a system is overdoing it, it weakens the entire system. Anything can be too much of a good thing is it is out of balance, proportion, perspective and so forth.

I'll post the links to other participants in today's Hump Hmm as they come along, so be sure to keep checking back over the course of the day.

copyright 2007 Julie Pippert


slouching mom said...

WOW, Julie. I had no idea it was this bad. I am so sorry for not paying attention to more subtle cues.

(This is total assvice, so please take as such -- but has anyone talked about lupus?)

Sending you all the x's and o's I can.

Snoskred said...

Wow. That's all I've got after reading this post. Just wow.

I had a doctor once who was like a dog with a bone. He wouldn't let stuff go. I wish he'd been your doctor 20 years ago.

I'm hopeful he's right and you will start to feel better soon.


Cathy said...

This is so perfectly articulated.

First, I am so sorry you have had to suffer through the many horrid elements of a chronic disease or condition.

But wow — you put all of this together so well, so coherently.

I hope your doctors are able to find a treatment that addresses all of the problems.

Thanks for sharing this. You've made a lot of women feel less crazy. We DO know when something is wrong. And we DO know to trust our instincts.

Even when doctors — or our friends — don't get it.

kim said...

You amaze me.

"This ebb and flow of sympathy and impatience is evident in other people, too. We all have such a limited attention span, such a limited patience for things out of the ordinary, good and bad. But especially for bad, because it makes us uncomfortable. We're wary of bad, never trusting that it's not catching."

I so relate to this, so I know that I can offer you this promise, unlimited patience and sympathy. You are in my thoughts and prayers.

mayberry said...

Oh wow. I struggled with chronic pain for years (in my teens & early 20s) and I remember the terrible frustration of not being understood and believed. I'm sorry you've been on that brink for so long.

atypical said...

Okay, let me say first that I so understand accepting the wrong diagnosis through worry over my own melodrama. It wasn't until I finally got referred to a rheumatologist that I breathed the sigh of, "Someone is actually taking this seriously" relief. Mind you, they still don't really KNOW what is wrong with me, and my google happy brain and worry-wart tendancies still often get the best of me.

I did try the advocate thing once, years ago, when I took my dear husband along. Usually this is a good course of action, but I didn't realize at the time that he sort of viewed it as being mostly in my head as well.

May your balancing act be successful! You know you are in my prayers.

-t (who is of the curious sort and would love more details, but respects the fact that you don't want to give them)

Mary-LUE said...

Cripes! I don't know what to say. I'm saddened that it took you so long to get the proper attention. I hope your new treatment works and that this doctor is right in that you will begin feeling better soon(ish).

You are so right about balance, especially in the body. It's like the Three Bears' porridge. Too hot and too cold doesn't cut it. It needs to be just right.

liv said...

Wow. That was a lot to wrap my head around--but to write?!

Anyway, come visit me for my Hump Day Hmmm... now that I'm playing along.

(I emailed you for proper form on this, but didn't hear back...)

thailandchani said...

I so completely understand this post, more intimately than you might realize.

My approach is a bit more metaphysical.. believing that the out of balance and toxic life I was living is what brought me to the diagnosis that finally took me out of commission.

I still believe it's metaphysical... all about balance, lifestyle, priorities.. all those things ~ and sometimes it means making changes we don't want to make ~ just so we can live in our own skins.

I am hoping, truly... this is not a platitude.. that you are able to find your balance, your comfort and your healing.

The only bit of assvice, as SM says, I'd offer is to always trust your own intuition. You know the truth. Deep inside of you, it's there.




liv said...

And, now that I have re-read, I do think I agree with you. Luck requires a speedy payment. That is definitely a theme in my own life. I am wishing and hoping good health for you--the balance, the peace, all of it. xoxo

Emily said...


I am really, really glad you found a doctor who is listening. A doctor who is not an idiot.

And that you finally put on your own oxygen mask.

mcewen said...

Great post, one that we can all benefit from.

Kyla said...

Great post. Valuable on so many levels. I've experienced much of this (the fallouts and repercussions) as we walked through things with KayTar, although the situations are very different, the reactions seem to be the same.

A good doctor, a doctor who LISTENS and VALUES your information, is an invaluable resource. I am incessantly thanking our pediatrician, and she replies, "I am just doing my job." but there are so many who do not do the job justice.

MadMad said...

I don't know you, so I feel awkward commenting about something so personal, but I wanted to say I don't think it sounds like "melodramtic tripe." I can't imagine how hard this must have been to go through - knowing you're sick but not getting any answers or help, while still trying to parent and lead your life. I also agree that people/friends don't always know the right thing to do or say... and you're right, you have to forgive them for it. Good luck!

Gina Pintar said...

I did not read the whole thing yet but I will tell about what I am learning to help my son.

OXIDATIVE STRESS. It manifests itself in one or more of the 7 major system of the body. (reproductive, pituitary, etc) correct and balance the stress and your body will follow.

This is how I am healing and helping my son. I have seen it with my own eyes. I am amazed at what I am learning. Have I said how I never liked biology? Yes? LOL.

Ok. going to read the whole thing now.

Gina Pintar said...

PS. You know I don't believe in luck. ;)

Lawyer Mama said...

Ah, so many things you've said in the past make so much sense now.

I understand, sister, oh, do I understand. You *know* if something is wrong. You know. But still, you begin to doubt yourself when doctors tell you there is nothing wrong. I'm glad you persisted. So glad.

It's funny, I discovered the reason for my infertility after the fact too. And sometimes it makes me angry. So I understand.

Funny story (or not really so funny). A dear friend of mine was exhausted, completely exhausted & losing weight, etc... For 3 months the doctors tested her & tested her & sent her to specialists & sent her to shrinks. Because, if they couldn't find something it must be in her head. Finally, she went back to her primary care doctor who started over & discovered with a simple blood test that she had mono. Which was now much more serious because it had gone untreated for so long. So, I'm a big believer in trusting your own instincts.

Karen said...

like SM, so sorry I didn't quite get it before now, but I'm glad to know and thinking of you and hoping for healing, balance and all that you need.

Anonymous said...

Its NEVER too late!

Bobita~ said...

Wow. This was an amazing, deeply moving post. I haven't anything much to say except that the amount of wisdom that you articulate at the end of this post is truly magnificent.

Christine said...

oh julie! i had no idea. . .

there isn't much to say that won't sound like pity or empty answers when you need none of those things. what i can say is that we all here love you and so hope that things get better--soon.

don't ever be afraid to talk about this here or privately in an email if you need to.

Magpie said...

Wow, Julie. That is a beautiful and painful post. I hope things turn around and get back in balance. Thank you, once again, for making me think.

Queen of the Mayhem said...

I had a dear friend who suffered from Chronic Fatigue Syndrome (Epstein Bar) and she discussed many of the same frustrations. She battled feeling guilty over not just getting up and making herself do things.

As women, and especially as mothers, we put entirely too much pressure on ourselves to be there for everyone in our lives. I am so glad to hear that you are finally taking some time for is so important...if only for your children! (Though we both know that is NOT the only reason it is important!)

Please keep us posted...and my prayers will be with you as you begin this journey!