Tag Archives: diagnosis

When is your health like a plugin? – On diagnosis, technical difficulties, and Band-Aids

Is there anything more annoying than technical difficulties? Technology is meant to quietly smooth the course of our daily existence; it’s a fact of life that we take for granted—even ignore entirely—until it starts to go wrong.

Well, maybe one thing: health problems. A healthy body is similar to working technology: it’s a neutral backdrop to our activities, a nonintrusive vessel for our thoughts and cares and aspirations. No one rejoices in their eyesight till they start to lose it. No one revels in their ability to sleep until insomnia strikes. No one praises their guts for breaking down food until the guts themselves break down. I certainly never realized how healthy I was until, one day, I wasn’t.

Once difficulties begin—with our technology or our health—we realize how essential its function was to our former happiness. And so begins the search for solutions. Step one? Diagnosis.

laptop keyboard and stethoscope

What seems to be the problem?
Photo © jfcherry | Flickr

The first definition of diagnosis, according to good ole Merriam & Webster, is “the art or act of identifying a disease from its signs and symptoms” (and for a good read on the “art” of diagnosis, I highly recommend Every Patient Tells a Story, by Lisa Sanders). But the third definition, “investigation or analysis of the cause or nature of a condition, situation, or problem,” is applicable to technology. That’s why you’ll hear IT people toss around the terrifying phrase “running diagnostics.”

Over the Christmas break, I moved my little baby gluten blog from WordPress.com to a self-hosted site, with some pro bono help from my computer-programming big brother. Although I like the freedom that gives me to, oh, throw affiliate links at you (not that I have, yet), there’ve been growing pains: I’ve had to diagnose and fix several technical issues since the transition.

With a self-hosted blog, you’re the one responsible when problems strike. You’re the patient and the primary care physician. Unfortunately, in my case, you’re a rather bumbling one who looks everything up on Google. The most you can hope for is to pinpoint the general source of the problem and refer yourself to the right specialists.

My latest “symptom,” as some of you are aware, arose this week. Several of my old posts—from June, September, and October 2013—were resent to my subscribers. Everyone who said anything about it was very nice—thank you!—but I felt bad about the spam.

Putting on my doctor hat (is that a thing?), I determined the problem was with Jetpack, the plugin that brought all my old subscribers to my new site without their having to resubscribe, which has been overall handy. A “Happiness Engineer” from their support team let me know they were looking into the problem. In the meantime, I could stop the emails by deactivating the plugin.

band-aid on finger, laptop trackpad

I’m also familiar with real Band-aids on my real fingers. I should not be allowed near sharp kitchen implements.
Photo © Tony Kwintera | Flickr

This type of solution—“We don’t know what’s wrong, but here’s a Band-Aid to get you by”—is depressingly familiar to me from my years with a diagnosis of IBS and, unfortunately, continues to be familiar. “Issues that haven’t gone away after nearly a year gluten-free could be connected with celiac disease; they don’t seem to be connected with anything else; and it might help if I try . . .,” etc.

I obediently applied my blog Band-Aid and emailed subscribers that the problem was fixed. Almost immediately, of course, the “deactivated” plugin emailed out yet another post (the robots really are coming for us). That’s familiar, too. Band-Aid remedies don’t work when there’s a deeper, undiagnosed problem.

Eventually, I received another email from Jetpack: “We’ve now fixed the issue. . . . Sorry again for the inconvenience.” Why it’s fixed, or what went wrong in the first place, I can’t say. My blog doctor clearly subscribes to Sigmund Freud’s belief that “The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

(Note: the word diagnosis derives from diagnoskein, meaning “to know thoroughly.” Generally it’s not just the doctor who gets to know. But Freud’s been wrong before.)

Lego doctor with laptop

The blog doctor will see you now (but you won’t see him).
Photo © Jay Reed | Flickr

Opacity aside, a diagnosis was apparently made, because the fix is in. Subscribers should—fingers crossed—be able to expect no more unwanted emails from my blog (which is why you should subscribe now, if you haven’t yet!).

Granted, if we sustain the health analogy, this is a bit like saying, “The doctors say I won’t keep projectile vomiting at random times without any warning, so you should be able to sit with me at lunch,” but once we’re discussing vomit I’d say it’s time to drop the metaphor, wouldn’t you?

Tell me—which do you find more frustrating: diagnosing health problems, or diagnosing technical problems? Do you find people take their good health for granted? And what’s all this about doctors being mirrors?

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Do you wear your snake-eating-a-unicorn tattoo on your sleeve? (Or, do you call yourself a “celiac”?)

Does illness define you? I’ve joked about this before, but it’s worth serious consideration. How much of a part of you is your health? And how much should it be?

Plenty of people identify with their illness enough to name themselves after it: diabetics, celiacs, Crohnies, Lymiesspoonies. The use of these names is vehemently opposed by others who consider them dehumanizing. “You wouldn’t call yourself ‘a cancer,’ would you?,” they prod. 

It’s a fair point, although many do call themselves “cancer survivors”—another way of identifying themselves by their disease. (Also, according to Wikipedia, some folks with terminal cancer reject this name in favor of cancer “diers.” I was unable to independently verify the name is used by anybody outside of Wikipedia. Have you heard of this?)

Look at just about any medical condition and I’m willing to bet you’ll find a subculture and nomenclature to go with it. You’ll find people affected by the condition who don’t participate in the subculture (or who don’t even realize it exists), and you’ll find people who have thrown themselves body and spirit into it. You’ll find people who hate that the subculture exists, and people who can’t imagine existing without it.

And in between you’ll find lots and lots of people totally confused about how much to participate, what to call themselves, and how much to allow their condition to matter in their lives.

Diagnosis identifies the disease, but we have to decide, afterwards, how to identify ourselves.

Author Hilary T. Smith, in her book Welcome to the Jungle, suggests diagnosis is like waking up one morning to find “a big old snake-eating-a-unicorn tattoo” on your bicep.

Seeing the tattoo, she writes, you might react in several ways:

tattoo of badger fighting snake

I was unable to find an image of a snake-eating-a-unicorn tattoo, but I did turn up this snake-fighting-a-badger tattoo that I am thinking about getting sometime.
Photo © BreadnBadger | Flickr

Underidentification: “Ho ho ho! This is surely but an amusing temporary tattoo placed on me as a prank. It will certainly wash off in the shower.”

Medium-Low: “This tat is real, but I am going to wear long-sleeved shirts for the rest of my life to cover it up.”

Middle: “Living with this tattoo is going to be a b**** and a half, but it’s also kind of dope.”

Medium-High: “Short sleeves for me, baby.”

Overidentification: “This tattoo defines me, man. I’m going to tattoo the rest of my body with snakeskin and have a horn surgically implanted on my head.”

(Smith, Welcome to the Jungle. Conari Press, 2010)

The book is about bipolar disorder, which I myself don’t have (and no, I’m not just underidentifying). Still, especially as I got to the end of the list, I knew this applied to me.

Although I prefer not to call myself “a celiac,” I do give celiac disease, and being gluten-free, a lot of space in my life and identity. Sometimes, I wonder whether I’ve given it too much.

For example, when I renamed my Twitter handle @spruestory, I wondered if that was taking it too far. I mean, that’s my only Twitter handle, and it’s now named after my celiac disease blog. Was this really how I wanted to “brand” myself? Would I look back one day and wish I hadn’t?

Clearly, I decided it was worth it to change the handle (and that Twitter isn’t worth so much existential angst). After all, I’ll have this disease for life, so I doubt I’ll be looking back five, ten, fifty years from now and thinking, “Gee, I wish I hadn’t told everyone I had celiac disease.” Unless the whole world goes gluten-free or they discover a cure, five, ten, or fifty years from now I’ll still need to be upfront about my disease. I’ll still need to announce it on dates, to new friends in response to dinner invites, to strangers at restaurants before I order, to bosses and colleagues at work. It may not be the first thing I’ll talk about, but it will come up.

But will I one day wish I hadn’t talked so much about celiac disease? Will I wish I had identified with it less? Maybe. I wish it already, sometimes. But, as I said, this disease is for life, so I’ve got plenty of time to figure it out. Until I do, I think I’ll stay far away from tattoo parlors. No snakes, unicorns, badgers, or Xed-out sheaves of wheat for my bicep, thank you very much.

What about you? What do you refer to yourself as? Where do you fall on the snake-eating-a-unicorn identification spectrum? Has that changed over time? Are you happy with where you’re at now?

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Don’t know much about chemical sensitivity?

Have you seen the movie Safe?

It’s about a woman (Carol, played by Julianne Moore) who develops a mysterious and steadily worsening illness—most likely multiple chemical sensitivity.

I watched it in college. Though it was a great film, it encouraged me to dwell on my own mysterious illness, which had begun earlier that year. The film set up questions like, “Is her illness even real? Will she ever get better?” Watching it, I couldn’t help but wonder the same things about me.

Later, of course, I found out I have celiac disease, and that it could get better. I just have to not eat some things (okay, a lot of things). Except for avoiding crumbs, I don’t have to worry too much about my environment. I won’t find gluten in the air anywhere besides a bakery, and the worst chemical I contend with is natural flavorings.

cover of Allergic to Life by Kathryn Treat

But I remained curious about chemical sensitivity, which I didn’t know much about beyond its portrayal in the film.

Now, I’ve learned about it from Kathryn Chastain Treat, one of my earliest readers and strongest supporters. She blogs about her extreme chemical sensitivity, and she’s just finished a book: Allergic to Life.

To celebrate her book’s release, I asked her a few questions about what is still a misunderstood and mysterious disease.

Readers, we’d love to hear your answers to these questions, too!

What do you feel your experience has in common with the experience of people with celiac disease, gluten intolerance, or food allergies? What’s most different?

Kathryn: I feel that in some ways we are very similar. We can’t just go and eat anywhere or anything. I have food allergies, which causes issues similar to those that someone with celiac disease encounters when dining out or with family and friends.

What makes me different is that I have not only food allergies, but also sensitivities to chemicals (perfumes, colognes, fabric softeners) and mold. I do a lot of dining at outdoor cafes if they can tolerate my food allergies (which include foods that may contain mold, like vinegar and soy sauce) and if I can manage to find seating far enough away from someone who is very scented.

What misconceptions do people have about your illness? Which get you mad? Which do you think are just funny? How do you respond?

Kathryn: I believe people, including many in the medical profession, feel that my sensitivities to chemicals and mold are not that serious. They believe that if I can manage a short time in a store (with my mask) that I should be able to go anywhere anytime I want. I also feel that people believe because I do not work and stay at home that I just sit and watch television and eat bon bons in my fluffy slippers.

What makes me the maddest is not taking my symptoms seriously. I think the perception that I have all the time in the world because I don’t work is probably the funniest. They have no idea how much work it takes to stay as well as I have managed to get and how long it takes to clean my house.

I have responded that my total load of what my body tolerates varies from day to day. If I am having a good day, then I can make a trip to the store. I can’t do this every day or spend all day doing this because despite my mask, my body gets too overloaded with chemicals and I end up sick. Sometimes I just ignore it all together because it is hard to convince someone once they have their own preconceived ideas.

What’s the funniest thing that has ever happened to you as a result of being ill?

Kathryn: My younger daughter was here for a visit and we were scheduled to visit my older daughter. My younger daughter had her hair done earlier in the day. Not thinking (I blame my off and on again companion—brainfog), we just jumped in my car. Of course she put on one of my required tyvek suits to avoid bringing any fragrances or chemicals into my car. We started down the road, and about ten miles into our trip I was having difficulty. I was getting a headache, congested, and my voice was slowly getting more of a crackle in it. Suddenly it dawned on both of us that her hair was making me ill.

As soon as possible I pulled to the side of the road and we both jumped out. How were we going to make it safe for us to continue on our journey? We couldn’t go on the way things were and I couldn’t call anyone to come help us. We searched the back seat and then the trunk to find something we could put over her hair.

Aha! There it was, a white plastic garbage bag in my trunk. I always keep some in the car for emergencies or having to put someone’s belongings in it before they can ride with me.

We got the bag out of the trunk and tried to put it over her hair. The wind was blowing and gusts of air would get under the bag and fill it like a balloon. We fought and fought the wind and the air in the bag. Here we are on the side of the road, she is already wearing the white tyvek suit, and we are now trying to put a bag over her head.

Enter the highway patrol cruiser. Just as I thought things couldn’t be worse or crazier than they were, the officer gets out to see if we need assistance. I have to explain as simply as I can without appearing to be a lunatic that I have sensitivities to chemicals and my daughter has just gotten her hair done, making me ill. I also explained that we were trying to cover her hair up with the bag but the air kept getting inside the bag. I purposely tried to ignore the fact that she was dressed in this white suit. The officer, however, noticed and made some funny comment about her tyvek suit and Ghostbusters and then calmly walked over and helped us get the bag on her hair. I was then asked to move aside so that he could write down my license plate number, which was required because he had stopped to check our status. As he walked away, he said it bothered him too when his wife got her hair done.

The story doesn’t end there. A few weeks later our tenant came to pay rent. He was talking about having coffee with his highway patrol officer friends. One had commented about these two women on the side of the road and how he had to help one put a bag over the other one’s head. I immediately started laughing and told him that I was one of the women he rescued that day. Our tenant knows all about my sensitivities and about my story. He started laughing and said he couldn’t wait to tell this particular officer that he knows the women.

I knew the officer would most likely go back and tell the story to all his buddies. I mean, how often does this kind of thing happen?

Okay, now what’s the least funny?

Kathryn: The least funny thing was when I made a quick trip with my daughter into Target. We were getting what she and I needed when we ran into a woman pushing her shopping cart with a little girl trailing alongside her. She saw me with my mask and made the fastest turnaround I had ever seen someone make with a shopping cart. I am sure she thought that I was contagious, and what she never knew was that I was more likely to get sick being around her than her from being around me.

What book or movie character would you nominate as the mascot for chemical sensitivity?

Molly: This was my final question, but we’ve both been wracking our brains and haven’t come up with anyone yet (there’s gotta be a Harry Potter reference in here somewhere). I don’t want to nominate Carol, because Kathryn and Carol don’t seem too similar (watch the film and you’ll agree).

Can you think of one? Let us know if so! Also, be sure to share your own funny and unfunny health stories. And, of course, check out Kathryn’s book.

She is offering a giveaway of three autographed copies through Rafflecopter, and her book is available at Barnes and Noble and Amazon (prices vary). Autographed copies (US Only) will be available on her website.

This is stop #7 on her book blog tour, and you can find the rest on her blog.

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Help me write a letter to my doctor

Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”

Photo © Ben Weston | Flickr

Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)

So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.

But she didn’t.

I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.

The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.

Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.

What I want to accomplish here is:

1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.

What I don’t want to do is:

1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.

Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!

Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?

Is it better to do this in writing or over the phone (in your opinion or experience)?

Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?

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