Five Years On

Tags

Affordable Care Act, exercise, fibroids, health, mental-health, personal, women's health

POSSIBLY TMI ALERT, but I want to say it.

On Sunday I took a nearly four-mile hike by myself – it was a lovely, responsibility-free day, after a lot of rainy, busy weekends, and I suddenly found myself thinking of the Dish Trail in the foothills by Stanford University. It’s got some steep ups and downs, enough to get the breath panting and the sweat flowing, but not enough to be utterly miserable. Normally I kind of hate hiking, so I really can’t say why this suddenly jumped into my head as a good idea.

But I did it. I took my ipod and had my phone and my car keys in my pocket, and set my own pace. I rested when I wanted to and didn’t care how often other people passed me. It took me an hour and a half, and on some of those final downhill stretches, I felt the shakiness that comes from tired legs on steep downhills. My step count for the day was over 13,000.

Today I did half an hour of biking AND walked nearly 11,000 steps. I’m still sore and stiff from Sunday’s hike, and I know I’ll be stiff and sore tomorrow with today’s exertion on top of it. My normal daily step count these days tends to fall between 6 and 7 thousand, so these two days have been unusual for me.

You might be wondering why I’m bothering to post about this. One of my coworkers asked why I was still marveling over being sore today when the hike was two days ago.

I’ve been thinking about that. And you see, it’s because at some level I’m astonished that I’m able to do this.

Almost exactly five years ago, the pain and blood loss resulting from uterine fibroids smacked into me like a ton of bricks. I’d stuck to a diet for a month at that point. I’d lost twelve pounds. And suddenly even standing long enough to cook a simple meal started the bleeding and the pain again. Forget exercise. I was afraid to move.

Pain led to fear. Fear led to avoidance. Avoidance became habit. It’s been five years, and I’ve had two surgeries to remove fibroids in that time. I don’t think I ever believed that I wouldn’t get past them, but when I was in the middle of it, it was so hard to see when it would end. I got caught up in the final months of the pre-ACA health care system, when even having had a fibroid removed within the past year was grounds for automatic rejection when applying for coverage. I couldn’t figure out how to get the surgery I needed without going several thousands of dollars in debt. I stopped dancing. I started avoiding social events because I was embarrassed about my frequent need for the bathroom and the fact that I had to carry several pads with me whenever I left the house even for a couple hours. I grew lonelier and sank further into depression because of pain, fear, and isolation.

And now here I am. Heavier than I was before this started, yes. As out of shape as I was before, and possibly more so. Still trying to reconstruct a social life. But I’m employed. I’m deeply worried about the ACA, but for now I have health insurance. I’m in therapy and on an antidepressant. Hormonal birth control and regular checkups have stabilized things. I have faith it will never again get as bad as it was in 2012 and 2013.

And this week, on each of two of the heaviest days of this month’s period, I walked over 10,000 steps.

I talk about it because I’m grateful, and because it’s a fact in which I can finally see how far I’ve come.

Why the ACA Is My Lifeline

Tags

Affordable Care Act, health, in the news, News, Obamacare, personal, rant, surgery, women's health

There’s a lot of talk about the Affordable Care Act right now.  The ACA, colloquially referred to as “Obamacare,” is a major overhaul of the American health insurance system.

Normally I keep my personal life out of this blog.  Normally I prefer to keep my politics out of social media entirely, as I do not find the medium conducive for such discussions.  This, however, is an exception to my rule.  I don’t pretend to be an expert, nor can I answer questions about the ACA.  But I want to tell you something personal about myself to explain why the prospect of the ACA coming into effect in January is a source of relief for me.

Those of you with Y-chromosomes should be warned – what follows has to do with women-problems, and while I’ll try not to get into too much graphic detail, I’ve found that you man-creatures get a little squicked out by stories of gynecological issues.

In October 2011, my cycle progressed as normal, until I found myself suddenly overwhelmed by severe abdominal cramps, worse than any I’d had before.  I chalked it up to the stress of moving to a new country and starting a new graduate school program.  I’ve sometimes found that stress and anxiety can exacerbate the symptoms associated with menstruation.  When things went back to normal for a few months, I didn’t obsess, but set it aside as a one-time aberration.

In February 2012, however, the pain was back, and it was even worse.  One day I was out running an errand, pretty much as far from campus as I could get and still be in the main part of Vancouver’s downtown area.  I was suddenly overwhelmed by waves of pain.  I managed to get to the store’s restroom, at which point I collapsed on the floor, breathing rapidly and shallowly.  The only thought that made it through the haze of pain was a faint wondering if that’s what being in labor feels like.  I managed to get up off the floor and out of the store, the only thought in my mind being to get back to my apartment as soon as possible.  It was as though I couldn’t keep still.  Even as I walked, my hands fisted and unfisted, and my toes did much the same inside my shoes.  I don’t know if there was any logic to it.  It just seemed like if I stopped moving, the pain might get worse.

I managed to find a cab and get back to my dorm.

Every month thereafter was like that.  Eventually the student health center referred me off-campus for an ultrasound, which showed a small mass in the uterine wall.

It’s estimated by some sources that as much as 80% of the female population have at least one uterine fibroid.  In most cases, they experience no symptoms and it may never be diagnosed.  One in four, however, experience symptoms severe enough to require treatment.  Symptoms include dysmenorrhea (unusually painful periods), menorrhagia (unusually heavy periods), painful intercourse, and even infertility.  In pregnant women, fibroids can cause miscarriage, bleeding, premature labor, or problems with the position of the fetus.

Fibroids are considered benign smooth muscle tumors.  They are benign in the sense that they are non-cancerous, but that word implies they are harmless.  For me and the 25% I fall into, they are not harmless.

The pain is excruciating.  Several months I found myself spending hours curled up on the floor of my shower, hoping the hot water would help.  The blood loss is frightening to see, and can lead to serious iron deficiency.  At this point last year, my hemoglobin levels were scraping the bottom edge of the normal range, and ferritin was at 9% of where it should have been.  Most women don’t seem to get enough iron with normal periods – when the blood loss is two or three times what it was supposed to be, how can we possibly keep up?  Iron deficiency means you’re always cold and always exhausted and always short of breath.  When even walking around the block can trigger bleeding, you become afraid to exercise.  Not to mention the body’s natural anticoagulants produced for menstruation can’t keep up, so you start passing massive blood clots – painful, again, and frightening.

My natural cycle inverted itself.  Instead of one week of period to every three-four weeks off from it, I had periods lasting as much as 16 days, with only a week off between them.  I’ve been unable to plan ahead, since I never know if I’ll be able to go more than 30 seconds from a bathroom.  I can’t exercise, or even take gentle walks. Sometimes just standing long enough to cook a meal has started the bleeding again.

There is a procedure to the treatment of fibroids.  First you try hormones – you go on the pill.  It regulates your cycle, and for many women, this is enough.  The pill didn’t really work for me.  It didn’t stop the breakthrough bleeding, but it did help a little.  Not enough, though.  Then we tried a shot of something called Lupron, which is supposed to drop the patient into three months of temporary, reversible menopause.  Again, didn’t really work – while it wasn’t the heavy bleeding, it was a steady, slow trickle for three months straight.  Better, but insufficient.  And it’s only a temporary stopgap anyways – it screws with your hormones and it can have adverse effects on bone density.

The next step is surgery.  Sometimes an entire hysterectomy is necessary.  In my case, it looks like a procedure called a hysteroscopic myomectomy will work to remove the fibroid in pieces without needing to make an incision.  I won’t go into details here – if you’re interested, try Google.

The procedure I’m looking at is a simple one-hour procedure.  However, this fibroid, this condition that affects up to 80% of the female population, is a reason for automatic denial by health insurance companies under the current system.  They don’t ask you how big the fibroid is, or whether it’s controlled with the pill.  They see that you have one, and you’re automatically denied. Without insurance, the pill I take is about $200 for a three-month packet.  Without insurance, a hysteroscopic myomectomy costs some $12,000.  That’s about twice what I have in total, since I have as yet been unable to find a job.

With the ACA, the health insurance companies can’t deny me coverage because I have an easily-fixed pre-existing condition.  They can’t charge me more for the pre-existing condition of being female.  If the ACA coverage had gone into effect this year, I’d have had the surgery months ago and be well into reversing the physical problems that have cropped up as a result of inactivity, pain, and blood loss.

With the ACA, I hope for more preventive care, so fewer women have to face hysterectomies to deal with fibroids.  I hope that more can find the tumors early and get the less-invasive procedures.  I hope that more feel they can go to the doctor when their body starts putting them through monthly hell.

With the ACA, you have coverage for mental health as well as physical health.  You have help paying for maternity care.  Your child can’t be denied coverage because he has asthma, or because she went to therapy in high school.

I’m lucky to have found a doctor that listens to me and goes to bat for me.  Because of her advocacy on my behalf, I have a probable surgery date for November 13, and admission to a financial aid program from a local clinic that will cover most, if not all, of the cost.  But there are lots of women out there who don’t have that kind of help.  Many don’t think they can afford to go to the doctor to find out why the pain and blood have increased so suddenly.

The ACA is not perfect.  There are lots of issues still to be resolved, both with the law itself and with the websites set up to implement it. But it’s better than what we have now.  We might one day be a healthier nation because of it.

Information Anxiety

Tags

anxiety, grad school, health, information studies, library, LIS, mental-health

In one of my classes last week, the lecture and discussion focused on the concepts of information anxiety and information avoidance.  The scholars who study these concepts argue that people will avoid information that conflicts with the individual’s world view or that will force changes.   This makes it sound trivial and petty, but it’s not. A lot of the literature on this topic uses medical examples – people refusing to get tested for genetic disorders or STDs, because the potential results will require drastic changes and important decisions the people are unwilling to face.  There are of course less traumatic examples.  One article we read used the example of a pretend study of physical attractiveness – do the participants want to know what the other (imaginary) participants said about their attractiveness?

Personally, I’d say no, but that gets into discussions of a favorite concept in social sciences and humanities scholarship: context.  We learn from experience, and if experience shows that similar interactions went a certain way in the past, we use that information to make our decisions.

I’m an anxious person.  I’m just wired that way.  It’s hard for me to avoid worrying.  I’m not talking the top ten phobias kind of worrying.  I don’t LIKE spiders, but I don’t spend my day obsessing about whether there’s one behind the fridge.  If I notice one in my apartment and I’m unable to catch-and-remove before it scuttles out of reach, then I get a little jumpy.

The thing about anxiety is it doesn’t feel rational.  It may have logical reasons behind it, but the feeling itself, not to mention the state of mind it creates, relies on illogical emotions.  Let’s face it: Anxiety is a kind of fear.  When I’m anxious, the feeling can be as minor as a gnawing feeling in my gut, or as major as a full-blown anxiety attack, including nausea, uncontrollable shaking, and inability to focus or relax.

I do avoid some kinds of information, not so much because I think it will force change, but because I know it will trigger anxiety.  One of the coping mechanisms for living as an anxious person is to learn what to avoid.  I don’t read any newspaper articles that mention the word “pandemic.”  I avoid announcements of what the newest OMGDEATHFLU is each year – I just go get the flu shot and hope fervently that it works.

Mostly, however, I prefer to rip the band-aid off, information-wise.  Most of the time, I’d much rather know.  When I’m anticipating information, the anxious part of my brain goes into catastrophe mode and starts imagining all kinds of terrible outcomes.  Information avoidance, to me, is generally way worse than having the information.  Yes, getting the diagnosis or hearing the news can create new things to worry about.  Yes, it can be hard.  But at least when I know, I can do something about it. I can create a plan and start working to solve the problem.  I hate the articles on the West Coast that come out every year or two that talk about how the “Big One” (earthquake) could happen any time, that we’re overdue for a massive shake on the Hayward Fault, and look how things will fall apart when it happens.  Those articles regularly give me a stomachache (not exaggerating).  On the other hand, it makes me paranoid about checking my first aid kits, which is arguably a good thing.

I’m struggling with anxiety a lot right now, in large part because so many areas of my life are stuck in holding patterns.  Finding a job, figuring out the health issues that plague me, dealing with social life, and so forth – it feels like a lot of things that are on hold until I figure out what happens after graduation.  Obviously the job thing needs to happen, like, yesterday, but everything else seems to rely on that.  Getting a job means getting health insurance (I hope), income, and hopefully a new social circle.  It means moving to a new place and navigating this whole grown-up life thing.

On the one hand, anxiety is making me attack this, do something about it.  I know I won’t feel better till I know what to expect from the next few months, and the rest of the year.

On the other hand, I kind of want to go back to bed and never leave that nice warm safe place.