Seven things I’ve learned from chronic, undiagnosed illness

During the years I was figuring out the celiac-nutritional deficiencies-liver damage thang, I had a few revelations that probably otherwise wouldn’t have been visited unto me until later in life. Several of these were a result of aphasia episodes, wherein my speech became slow and halting and would occasionally just stop mid-sentence.

People listen to the pattern of your voice before they listen to what you say. When the aforementioned speech weirdness caused me to break off in mid-sentence, coworkers and friends would laugh as if I’d said something funny, even though I hadn’t and even though I clearly had not finished my sentence. Maybe they just thought I was making a half-assed attempt at comic timing. Several years later I discovered with a certain acquaintance that when I, like, ended my statements on a questioning “up” note?, she was pleasant and cheerful, but when I used a more professional speaking voice, with confident final notes, she would invariably contradict me.

Nice friends are not always good friends. For some people, “nice” means “let’s avoid all unpleasantness, shall we?” Others confuse their passivity with niceness. They won’t be the ones to tell you that you can’t seem to follow conversations anymore, or that you’re starting to smell weird.

Long-term insomnia is inconceivable to most people. Even when they want to believe you, they can’t. Both civilians and GPs will assume you’re misestimating the time you’re awake or that you’re doing something wrong. (Sleep experts are a lot better about this than they used to be, although their tools are still pretty useless.)

A huge section of American culture does not work as advertised and cannot be relied on to solve long-term problems. If nothing else, knowing how useless our healthcare system is mentally prepared me for when all those other big institutions broke. Or were revealed to be broken.

People like you more when you ask them questions. For introverts, asking questions about things that don’t genuinely interest them feels fake and forced, but extroverts understand that it’s all about demonstrating interest in the other person’s interest in the subject. You don’t have to give a hoot about the topic itself. The strategy has another advantage, as a well-liked coworker of mine pointed out: “When someone gets really boring I just ask them a question.”

Much of what you say is to reinforce an image you have of yourself. Another aphasia revelation, best expressed by a woman who wrote an account of her month-long vow of silence, which I have to paraphrase because I can’t find her article now. She discovered that almost all of what she would have said was not about sharing information or an experience, but creating a picture of herself for the person she was talking to. I did find another person’s vow-of-silence story here.

Not working because you feel like shit is inconceivable and even morally wrong to a lot of people. As long as you can still walk and remember your multiplication tables, you are expected to continue working, even if 80 percent of your energy goes into getting dressed in the morning. Presumably you are expected to wait until retirement to figure out your health problems. I guess a lot of this is due to fear and denial, since few people can afford not to work. No one wants to imagine that it could happen to them. Another reason is profound ignorance about what medicine can accomplish, leading to assumptions such as: any prescription drug is better than no drug; there’s a prescription drug for every malady that exists in the world; if you refuse to use prescription drugs then your illness is your own fault; and if doctors can’t find anything amiss with a person who continues to insist that something is wrong, said person has mental issues.

Twenty links for April 2013

A selection of articles I’ve recently bruited to the world on Twitter, Google+, and Facebook.

  1. Autoimmunity and the worm (Nutri-Link Clinical Education)
  2. Naturopathic treatments for anxiety (Nutri-Link Clinical Education)
  3. Number of drugs that react dangerously with grapefruit is increasing (Nutri-Link Clinical Education)
  4. Lies the stress-addicted tell themselves (Whole 9 Life)
  5. Withdrawal symptoms from psych meds might earn you another psychiatric diagnosis (Beyond Meds)
  6. Human stool treatment upends race to treat colon germ (Chicago Tribune)
  7. Blogger’s self-experiment with his salt intake and blood pressure (Seth’s Blog)
  8. Poop: the cure of the future? (Chris Kesser)
  9. Sugar consumption declined 12% between 1974 and 1976, so the sugar industry hired a PR firm (Mother Jones)
  10. Vitamin D promotes fat loss, muscle gain in women (Dr. Briffa)
  11. Gluten sensitivity in the absence of celiac disease exists (Dr. Briffa)
  12. “Open labs” bring academic, govt, pharma researchers together to work on new antibiotics (NYT)
  13. UK institution on diet and health is partly funded by the food industry (Independent UK)
  14. Ray of light in the right location boosts motivation (New Scientist)
  15. Calculator for UV exposure and vitamin D production, given location, time, sky condition, etc.
  16. How antibiotics make you fat (Mark’s Daily Apple)
  17. 7 foods you don’t need to buy organic (Mark’s Daily Apple)
  18. Top 9 most important foods to buy organic (Mark’s Daily Apple)
  19. Review of vitamin D deficiency and how to correct it (Times UK)
  20. Incontrovertible evidence that smile intensity predicts lifespan (Paleo for Women)

 

 

Sorbitol: evil? Discuss.

I should’ve learned this long ago — just because you’re okay with a tiny amount of something every once in a while doesn’t mean you’ll be okay with larger doses every day for a year. That was my thinking with sublingual supplements containing mannitol and sorbitol. It didn’t even occur to me to worry about it because I’d never taken them more than once every few weeks. (Aspartame is another story — that is scary #$@!.)

The miserable mouth symptoms, which I’d assumed was just another stop on my path to decrepitude, got so bad it woke me up at night. It matched descriptions of a candida infection gone ballistic, and everything I’ve ever seen about candida says it is close to impossible to get rid of. This grossed me out so much that I threw out all my toothbrushes, lipsticks, and lip balms, and started soaking the new toothbrushes in hydrogen peroxide between uses. I scrubbed all the sinks and poured boiling water down the drains, followed (after a decent lag) with a hydrogen peroxide chaser. I started brushing my entire mouth so thoroughly with an electric toothbrush — much better for this sort of thing — that I’m pretty sure I now qualify for a union card for the San Fernando Valley film industry.

After a few days it dawned on me that the discomfort got worse after taking the GABA and vitamin B12 sublinguals I’d been taking daily for a year. Both contain mannitol, and the GABA Calm, which was definitely a bigger problem, contains sorbitol. I quit ‘em both and two days later was much better.

Never again will you hear me sing the praises of GABA Calm, which until it started with the putrefying-tongue business worked quite well to slow my brain down at night. I now curse it. I will not dignify rumors about the company’s monthly sacrifices of virgin employees in the processing vats, but I do have it on good authority that the CEO eats kittens for breakfast.

Six months using a sea sponge tampon alternative

W A R N I N G: Graphic lady-parts talk follows!

Please, Lord, don’t let me accidentally post this on my writing client’s WordPress account, or 5,000 muscle car owners in Texas will get a nasty shock.

In addition to the Niagarrhagia I documented last year, I’ve also been plagued by steadily increasing pain during my periods that started to get distracting a few years ago. It originally started a decade ago, but once I switched to organic tampons it went away for several years.

This isn’t the usual cramping pain, but a something-has-gone-very-wrong inflammation kind of pain. And of course a series of exams and fancy-ass tests with beeping, blinking machines revealed nothing.

For a while the pain would start several days into the period. Then it started at the beginning. Then it got to the point where just thinking about my period made my teeth grind. Another weird development was this spasm thing where I’d have a strong urge to bear down hard with the muscles traditionally used to expel progeny (or belly dance), as if my body was attempting to get rid of the tampon.

Finally it got so dreadful I started looking at tampon alternatives. (Pads are not even remotely an option). The first I found was the Diva menstrual cup, but it seemed too difficult to insert and remove. So I started with a sea sponge — natural sponges from Australia and Thailand (I think) that you can size with scissors. The company that sells most of them calls them sea pearls.

I was intrigued by accounts of women whose heavy periods became much lighter and shorter after several months on the sponge. Some believe that the chemicals used in commercial tampons and pads, designed to make them more absorbent, actually go overboard and start drawing too much fluid from your body.

The difference in comfort was noticeable immediately. It was a huge relief. I actually couldn’t feel it at all. The spasms stopped, too. The sponges are much more absorbent than tampons, depending on how you size them. No odor attaches to the sponge after it’s rinsed; it just smells like a wet sponge.

Other changes I noticed over the next months:

  • The last two days of the cycle became much, much lighter.
  • Horrifically heavy days went down from 2.5 days (and 2 nights) to 1.25 days, but those hours are still pretty heavy.
  • Clots disappeared, but then reappeared a few months later. Not sure what that’s about.
  • The weird odor that started a few years ago appeared later and later in the cycle, then stopped altogether.
  • The lack of accumulated trash in the waste bin is a nice change.

Here are the drawbacks:

  • For me they don’t last as long as advertised — three to six months — but it may be because when I disinfect them in hydrogen peroxide I tend to wander off and leave them soaking for too long.
  • I have yet to change a sponge in public, and I’m not looking forward to it. You sure as heck don’t want to be rinsing that thing in public, so a spare is needed and the used one goes in a plastic bag. (Preferably a firmly-sealed opaque one, to minimize the potential for traumatizing innocent civilians should you end up tripping and tossing your handbag’s contents all over the floor. I worry about these things.) The logistics of all this in an office bathroom freaks me out — keeping your hands and clothes clean during the switch, etc.
  • Figuring out the right size takes some doing. It took me five months of experimenting to get two sizes to work for different flow levels. The instructions that indicate how to shape them were not helpful.
  • Rinsing the sponge when your sink isn’t smack-dab next to your toilet might be tricky.
  • And then there’s the noise factor. I don’t understand why this happens — maybe because the thing is full of holes, and when you cough you become a sort of twisted wind instrument? The only time that happened with a tampon was with much-too-small tampons on very heavy days, when sneezing or during a, uh, sudden flood. It doesn’t happen all the time, and even less when I switched to a larger size, but it only takes one incident during a business presentation and you’ve got PTSD for the rest of your life.
  • Fishing around in your coochie for errant feminine products can induce grunting and swearing, which might have negative effects on your reputation at work.

At this time I’m inclined to say that whatever causes the heavy flow and inflammation is still unidentified, but the sponge lessens the irritation a great deal.

Side note: The Period Store carries all sorts of traditional and alternative feminine products that you can arrange to have mailed to you on a regular schedule. I don’t know if there are other similar services out there and I have no experience with this one whatsoever — I just saw a post about it elsewhere (one of the owners has a hairstyling blog) and checked it out. They carry two brands of menstrual cup and two brands of sea sponge, plus washable cloth napkins and even something from FRANCE! Ohmigosh. Each monthly package also comes with chocolate.

 

Nutritional therapy-based alcohol treatment center

A staffperson at Julia Ross’ Recovery Systems Clinic directed my attention to an alcohol treatment center in Minneapolis run by a woman with a “philosophy similar to Dr. Ross’.” The Health Recovery Center, run by Joan Mathews-Larson, addresses the nutritional deficiencies behind conditions that tend to drive people to self-medicate — depression, anxiety, ADHD, ADD, etc.

 

10 more blogging tips

See my first list of blogging tips.

An editor at Mashable once said that you shouldn’t take blogging tips from anyone whose blog gets fewer than 10,000 visitors a day. Or maybe it was 100,000. She can bite my squirrel. So what if my blog is so niche that even spam bots sneer at it. So what if I’m still not entirely sure what a spam bot is. I’ve been from one end of the blogosphere to the other, have posted regularly on two blogs for 2.5 years now, and have commenters from all over the world — at least a dozen of ‘em.

1. Don’t start a blog assuming that your friends’ interest will be the impetus to keep posting. It rarely happens that way. Any community you build will probably be from outside your social circle and will take many months to acquire.

2. That’s not necessarily a bad thing. We spend a lot of energy reinforcing the image of ourselves we think other people have. Writing for an audience of strangers who have no preconceived ideas about you can be freeing.

3. Resist the urge to make unflattering comments about the author photos of any books or websites you refer to. Those authors might actually visit your site.

4.  Consider that five posts a month seem to generate significantly more traffic than four. IME, anyway. Something to keep in mind If you can’t post as often as is recommended by experts (at least several times a week, they say).

5. Remember: more traffic means more asshole commenters. My experience guest posting on sites with more than 10,000 visitors per day told me that I cannot handle petty, ignorant snarkiness on a regular basis.

6. Use a responsive (mobile-device friendly) blog design especially if you’re using your blog as a work sample for potential employers or have a younger audience. You can check out what your blog looks like in various mobile devices here.

7. Don’t feel you have to publish every comment. Rude or aggressive comments will turn off many readers and will encourage other rude @#$!ers to visit.

8. Then again, some commenters just need a little bit more understanding. Especially on health-related sites, some people are struggling with issues that make smooth communication difficult.

9. Look out for a pervasive, subtle pressure to write in a sunny, optimistic voice. It’s especially common in women’s lifestyle websites. If that’s not how you feel, it can cause a build-up of resentment about blogging. Or maybe I’m just imagining it.

10. Don’t be afraid to say, “I don’t know.” Or I forgot or I changed my mind or I made a mistake or I’m no longer sure. You’re writing a blog, not coding for NASA. Readers might also be more inclined to contribute if they think you’re open to suggestions.