Category Archives: Hospitals

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Why I’m Not a Numbers Girl

“You have a 75 percent chance of not being able to have children on your own,” the fertility specialist told me matter-of-factly, barely looking up from the computer screen where she was clicking through research studies on the topic.

Instantly, I disliked her. Usually, I appreciate a no-frills approach to medical information. I know enough about terminology and facts to converse with the most technical of physicians by now, and prefer cutting through translations. But this terrain was unfamiliar to me. Suddenly I wasn’t confident, unflappable me; I was reduced to a number, and it wasn’t even a number either of us could quantify one way or another.

I barely heard the “on your own” portion of her assessment, so taken aback by the odds. I’d known women with my condition (primary ciliary dyskinesia, or PCD) have trouble with fertility, but I hadn’t realized exactly what “trouble” translated to mathematically.

The specialist launched into an overview of my options should I fall into that 75 percent—surrogacy, IVF, and medications, as well as their prices—but I wasn’t ready to hear my options yet, never mind process them. I wasn’t willing to abandon the chance I could be in that fortunate 25 percent.

The shock of that particular doctor’s appointment reinforced how much I hate numbers. I always have. I slogged grudgingly through geometry and calculus in high school, doing well enough but spending more time on math class than I did on my other eight classes combined. In between journalism internships, working on the school paper, and writing papers for English class in college, I took computer science and marine biology courses just to escape math class. When I entered a graduate program for writing, I figured the verbal part of my brain that had carried me for so long would finally be allowed complete domination.

But if I wanted them to, numbers could define my daily life in all sorts of ways:

1,000 is the number of documented cases of PCD in the United States (though up to 25,000 people are thought to have it but have not been diagnosed). 20+ is the number of surgeries I’ve had, though we stopped counting so I cannot be sure. My medications now number 8 a day, a two-year low, but with winter coming I expect those to increase. I have 7 different medical conditions, a number that fluctuates when temporary problems flare.

I get chest PT 1 time a day, 7 days a week, 52 weeks a year, but my insurance will only cover 3 visits from my physical therapist per week so I need to improvise. 5 is the number of health insurance plans I have switched to in the past 12 months, and 3 is the number of said companies that have denied coverage of the very preventative care that allows me to stay out of the hospital. 4 is the average number of days per week where I have notable difficulty breathing. 26 is the number of years I have been sick.

There are certainly a lot of statistics, but little that jumps out and describes my life, my motivations, or, in the case of my 75 percent odds, my possibilities.

When I look at such a sampling of numbers, I am reminded why I am not and never will be a numbers girl. I cannot add all those parts up and get a whole me.

And on rough days when all the English degrees in the world cannot help me find the words I need, it’s important to remember that I cannot start speaking the language of numbers–they will always fail to capture what is both intangible and essential: hope.

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Body Confidence: How Mutinous Bodies Influence Our Instincts

To be fair, I had warned the nurse trying to insert an IV into my arm that I was a “bad stick.” While that is the understatement of the year, I hoped it would let her know that the problem wasn’t her, it was me. Or, as I liked to say, my wily, conniving veins. I needed an ACTH stimulation test to check my adrenal glands. It should have been a simple procedure—draw blood, insert medicine via IV infusion, re-test blood one hour later.

Looks like I may have jinxed all of us that day.

One hour and 45 minutes, 14 sticks, eight blown veins, several hematomas, multiple heating packs, a couple of additional phlebotomists, and much teeth-gritting later, the nurse wouldn’t even come back into the room and I still didn’t have an IV line started. At first, I tried to crack jokes and smile a lot so the nurse—I’ll call her Tammy—wouldn’t think she was hurting me. I have a pretty high pain tolerance (I get my cavities filled without Novocain), but even I will admit that it did hurt.

“No really, it’s okay, you can keep going,” I told her when the needle went into yet another vein and no blood came back out. She’d push and prod until the vein blew or else swelled up to the size of a golfball. After a few tries, she called in the phlebotomist, and an interesting turf battle transpired in terms of tactical approaches. After awhile, Tammy got even more rattled watching over her colleague’s shoulder, and she left the room altogether.

“I don’t understand. I do these all the time, but now I’ve lost my confidence. I don’t want to go near you, and I don’t want to hurt you,” she said as she left. She was practically in tears.

I never got my IV. They had to push the medication in all at once with a syringe and then re-stick me for the second blood draw an hour later. I left with 15 band-aids, several very sore and swollen patches on my arms, and a few instant heat packs to tape around my arms later in the day.

I looked like a disaster, but I honestly think Tammy came out of the experience more troubled by it. “I just don’t have any more confidence in my ability to put in an IV,” she said as she gave me my parting instructions. I was struck by how the balance of power had been disrupted by some tiny, stubborn, and scarred veins. I tried to comfort her with assurances that everyone struggles with my veins, but it didn’t help.

Being the patient trying to console and bolster my healthcare provider was an odd role reversal, but one I’d experienced before. Whenever my body doesn’t act the way it needs to, I feel responsible to remedy the discomfort it causes, like it’s somehow my fault that people lost confidence in their skills when left alone in an exam room with my complicated medical history and my uncooperative body.

But I could relate much more to Tammy than I’d have guessed. I am used to temporarily losing confidence in my own body and in my own skills as a result of my various conditions. It’s the worst when I am returning back to a more “normal” schedule after a prolonged absence or exacerbation. I begin to doubt what I can do, question my stamina level, and hesitate in making plans or commitments because I am not sure I can trust my body the way I once did. Eventually I get there, but while it happens, it is a terrible feeling to question my own instincts, the same instincts that have proved so wise in the past.

I see now why that IV scenario was so precarious for both us. Tammy and I each have our expertise—hers as a nurse, mine as a patient—and yet my body managed to make our knowledge backfire for both us that day. Goes to show that no matter how much you think you know, illness is always an equalizer.

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It’s All Relative: Gaining Perspective in Maintenance Mode

After twenty-odd years of respiratory emergencies, bizarre infections, and multiple body systems going haywire at the same time, I am used to crisis mode. I studied for finals and wrote newspaper articles from the ICU in college, backpacked through Europe with a broken ankle and torn ligaments, and taught undergraduate writing classes so fresh from the hospital that I still had an IV in one arm and a hospital bracelet on the other.

My attitude matched my actions. During ambulance transport, I cracked jokes through an oxygen mask. I referred to spells where I was too run down to even leave the house as my “Boo Radley” days, and when innocent phlebotomists entered my hospital room to draw blood, I serenely offered them my ankles since they’d be hard-pressed to find a vein anywhere else.

And then something happened.

I got better diagnoses, more targeted treatment plans, and doctors who managed to unravel the thorny mess known as my medical history. I entered a hitherto foreign place known as maintenance mode. I wasn’t healthy in maintenance mode, but I was stable. Instead of the cycle of crisis-recovery, crisis-recovery that had shaped most of my life, I had series of so-so days punctuated by the occasional really good or really bad day. The difference was that the really bad days were not nearly and difficult as they had been, and the really good days were markedly better.

Sounds great, right? And it was. But it was also hard. I simply didn’t know how to exist without a constant barrage of setbacks and calamities, and I’d never had the downtime to evaluate how my baseline health status had changed over the years. While it was wonderful to not be in and out of the hospital as often, it was almost as tough to see for the first time what “everyday” health meant for me. Most days, I did have a hard time breathing, and that was never going to change.My energy level was still pretty low, but I began to see that the more carefully I planned my activities, the more successful they were. I stopped looking at life in terms of “getting back to normal” and realized that this new reality was my normal. There was no drama to eclipse the hard facts anymore.

It took awhile for me to relax enough to start making weekend plans with my friends again and be confident I’d feel well enough to attend. Slowly, I went through “re-entry” into the world of the healthy, and found my position within that world. While the wheezing and congestion had worsened over the years, they now fit in around teaching, writing, and getting to the gym. My daily chest PT visits were no longer my only contact with the outside world but were routine activities I scheduled into my busy days.

Maintenance mode, then, was largely about accepting realities that were so easy to ignore in the flurry of ER visits, CT scans, and IV lines. It was also the first time I’d really seen how skewed my understanding of “crisis” was. If I wasn’t turning blue from lack of oxygen or having some sort of cardiac episode, then that meant there was nothing really wrong, which I now see is a dangerous lack of a middle ground.

Luckily, I have an exceptionally healthy husband who helps in the ongoing process of defining things for me. Things like bronchitis, pneumonia, or kidney problems don’t faze me, but they certainly faze him. Somewhere in between my laissez-faire attitude towards anything short of near-death and his usual interaction with sickness—a seasonal cold or allergies—is the common ground I need to survive as well in maintenance mode as I do in crisis mode. The choices I make for my health no longer completely usurp the choices I want to make for my spirit and because of that, I no longer resent them.